someone could help me please

[frank1980]

Dear friends,

I write this message to you because, during these last days, I'm experiencing a problem that I don't know if it's related to testicular cancer or not. Even if the doctors said to me there is nothing to worry about, this problem has started to become more important and it's literally making me living in the hell. To make a long story short, my problem is that I'm feeling a constant and strange sore at my penis. It's hard to explain how I feel this pain, but I try to do it anyway: in most of the occasions it takes place on the top of my glans, but sometimes I feel it "moved" into the urethra, the scrotum till it reaches my anus. It doesn't have a constant level of painfulness, sometimes is stronger sometimes is lower, but it never disappears. Before discovering the testicular cancer I remember to have yet this pain, even if didn't appear very often, sometimes I felt like a puncture or a sting located in the interior part of the penis, it was very painful and didn't last too much, only four or five seconds then disappeared. After the orchiectomy it went away completely and started appearing two or three days after, but it was very weak. When I asked to the urologist about the possible cause, he answered to me that there was nothing to worry about and that soon it would have disappeared. Things went ok for two or three days, but after it came back again. I talked about it to my oncologist and he answered to me that it could have been urethritis, and that was partly related with the surgery I had before. He suggested to me not to think about it and to stay calm and to go on. When I had my PET scan, the machine found two little areas of hyper activity located on the peak of my glans, but the radiologists, the doctors and my oncologist said that those were drops of radioactive urine located in the zone between the glans and the foreskin. I was happy to hear there was nothing to worry about, but now, since two days approximately, the pain came back and it started torturing me again. As I said before, there are moments where it's low and gives me no problem, but unfortunately there are also periods where it starts to explode... I feel again that sting puncture sensation on my urethra, sensations of nipping at my glans and sometimes it extends reaching all my scrotum and the anus. A doctor at the hospital, that works together with the urologist, asked to me if I have problems (e.g. burning sensations) when I go into the bathroom for making urines, but I don't have them. Moreover, if I try to touch my penis, it doesn't hurt to me as a reaction (or, on the contrary, if I touch it when it's hurting and try to massage it, the pain doesn't stop or change). So far, the hypotesis that I have made (since the doctors said to me that it's an uncategorized inflammation) are three: a balanitis, an urethritis (according to what the oncologist said to me) or a prostithis. I don't want to think to a second contemporary cancer (even because, in most of the cases, in every event of cancer, pains occur when the tumor is in an advanced stadium, and the two areas that the PET scan found are not meaningful according to what the doctors said) but the fear is very high. One of the doctors said it's helpful in this case to do an urethral swab test, and I'm thinking seriously to do it (even if people says it's painful I don't care, but I have to postpone it because on the next Monday I will have to go to the radiologic center to do a radiotherapy simulation). If someone of you had the same problem after the orchiectomy, or wants to suggest me every kind of thing, please answer to this topic, any help or encouraging word will be very appreciated from me, even because I don't have nobody to talk about, and when I'm alone at home there is a tornado inside my brain...

Have a nice day!
Frank

[a.d.]

Frank, there's no way this is related to TC. People don't get metastases in their penises (especially not if the clinical picture is otherwise a stage I seminoma). Other than that, I guess, it can be any number of things. Do get it checked if it bothers you, but I think you can definitely stop worrying that this is TC.

[Kat]

Sorry that you are having such a horrible time, Frank. That sounds awful.
Can you give us a bit more information on your history with TC? Such as when you had your orchiectomy, and some details about your type of TC? That might help some give us some ideas of what might be going on.
I'm very saddened to hear that your doctors are so dismissive of this type of pain, which is most certainly not normal to experience. In the meantime, I would suggest you seek a new physician to give you some more options, and go ahead with whatever diagnostic testing they can offer you to hopefully give you some answers and some relief.
Best wishes,

[frank1980]

Hi my friends, and thanks for your answer. My seminoma was classified in the first stage (in particular, the parameters were pt1,Nx,Mx) and, according to what was written in the histologic report, it has only invaded the rete testis and the tunica albuginea without exiting from them (the epididymis and the spermatic cord are free from invasion). The urologist and the oncologist are quite sure that the orchiectomy has already cured me and the adjuvant radiotherapy that I'm going to have (that was suggested by my oncologist) very probably will be avoided and I will be put on surveillance. I had the orchiectomy on the last 22nd of February, all the blood tests were ok, in particular my first Afp test was of 1,9 and the bHcg was less than 1, even if, at the second check, the Afp raised up to 4,4. My LDH level is of 354 and there are no more altered values. The strange fact is that there are moments (like now) that this pain is very very very very low (sometimes I don't feel it) and on the other hand there are moments where it hurts very much. My fear is that this could be not a metastasis of the seminoma, but a new primitive and contemporary tumor that is generating in the penis area, even if, as far as I know, pains occur only when the cancer is in an advanced phase. That's what, by now, the doctors have excluded this possibility, and they have asked me some specific questions to discover if this could be prostithis. But I don't have the symptoms of prostithis, in fact I don't feel burning inside the penis when I make urines. The oncologist said to me it could be urethritis and that is in a some way related to the TC (or better, to the surgery that I had, because when the doctors had cut the skin to extract the testicle they did also an internal cicatrix (I don't speak English very well, I mean an internal wound) that needs time to recover, so probably it has inflammated my urethra and that's why now the penis and all my perneum hurts. Another hypotesis is that this is an allergic reaction to the prothesis (the false testicle) that the doctors put me inside the scrotum to replace the natural one that was gone, or probably a balanitis (since I have a lockout phimosis and I can't reach the glans to wash it, during these last month probably the glans and the urethra had inflammated or smegma has gathered in the foreskin and it's giving me pains, this could be probably the more realistic probability, because I had these pains also before discovering the seminoma and having the surgery). The sadly funny thing is that from all the blood tests everything seems to be ok, except for the Afp that has increased a little bit. I don't know if this tumor marker is related also to other types of cancer and not only to the testicular one, but the doctors said that, even if it has increased a little, there is nothing to worry about because I'm still in the range, and there is no correlation neither with the TC nor with the pain at the penis and urethra. As I said before, on the next Monday I will have to go to the hospital to had the radiotherapy simulation, and I will ask to the doctors there to be visited also at the penis and to see with their machines to explore better the zone of my penis. To look at the positive side of this day, this morning the penis had not hurted me so I'm feeling a little bit better... what can I say, let' s hope that the pain won't come back at least today and makes me free to breathe a little bit... on the psychological side, believe me, it's very hard to go on when you are alone and have nobody nearby you to talk about...

If I don't disturb you, I will keep you posted...
Have a nice Saturday!
Frank

[cbvance]

I have the same basic diagnosis as you Frank, I'm sorry to hear that you have this issue. I agree with you that perhaps the swab test will at least answer some questions and help with a diagnosis, I understand that you have apprehension about the pain of the procedure, can you ask for the doctor to medicate you first so the pain will not be as pronounced?

I'm praying that God bring a diagnosis and treatment to you for this other issue, it's hard enough to be dealing with TC but now you have to also be concerned for something else. Stay strong Frank.

[frank1980]

Thank you my friend... now that I'm writing I'm very very very scared because I went into the bathroom and I have tried to make my glans come up (since it's hidden by the phimosis). I was able to make it come out, but what I saw made my blood literally freezing. Even if I'm not a doctor, I saw the right side of the glans coloured in hot red, while the left side was coloured normally. At a first sight, it seemed to me to be a lesion, but I have examinated it with more logic sense and seems that it is not a lesion but a severe inflammation. You can't imagine how hard was for me to discover the glans (I hate my phimosis) and when I saw the situation I felt sick, but now I'm trying to relax myself and to mantain my self control. I'm praying God that this is not a second primitive cancer, it would be devastating for my mind...

I understand that you have apprehension about the pain of the procedure, can you ask for the doctor to medicate you first so the pain will not be as pronounced?

Today it's not easy to call any doctor here my friend because it's Saturday. Here in southern Italy, especially where I live, the public sanity service is a shame... I'm forced to wait until Monday...


Love you all!
Frank

[cbvance]

Here is the US it is difficult if not impossible to see a doctor on the weekend as well, but we do have hospital emergency rooms and clinics that have doctors on staff. Is this a possibility? If the pain becomes too severe you could go to an emergency room and at least see a doctor and perhaps receive a pain medication or anti-biotic if it is an infection.

[frank1980]

Well, now I have come to the hospital to see if there was any doctor available but unfortunately all the urologists are off duty for the weekend and I have found only a generic doctor. He saw my glans and said that, in his opinion, there are no dangerous elements, and he touched my penis to look for lumps, but he didn't found anything. His opinion is that probably this is a low grade infection and that due to the emotional stress I'm enhancing every kind of pain and ache that I feel, and gave me a medicine (in Italy it's called "Gladio", I don't know how is called in the other countries) telling me to take it when the pain increases and not more than twice a day. At this moment I don't feel a strong pain, but a sensation like there are some stings inside my glans, they come and go... and my brain is really exploding...

Thank you for reading me and supporting me! You are all great persons!
Frank

[cbvance]

I'm glad you were able to meet with a doctor, even if its not a specialist at least it sounds like you can put your mind at rest that it is probably just an irritation of some sort, sounds like he gave you something for pain. Did you get anything else? I would have expected an anti-biotic unless the doc thinks it just inflamed rather than infected.

[frank1980]

My friend, the doctor explained to me that he had not enough elements to decide if it was an infection or not (he thought it could be, but he didn't want to give me an anti-biotic because he thinks that, if it's unsure whether it's an infection or not, it's better to avoid to take anti-biotics and to wait until the urethral swab test). He explored my glans and my foreskin and found them irritated, but with no tracks of smegma, papulae or other substances that can be found at naked eye. Furthermore, since I woke up this morning, the pain has decreased a little bit, now the constant sensation that I'm feeling is a sort of "high sensitivity" at the interior of the penis and on the glans, sometimes together with quick moments of pain that come and go very fast, I feel them both on the peak of the glans and inside my urethra.

Have a good Sunday!
Frank

[frank1980]

A little update for today,seems that the pain has disappeared by now and I can take a moment of mind rest before the beginning of the battle tomorrow... I consider it as a gift that my body is giving me for this Sunday...

With friendship to everybody,
Frank

[frank1980]

Tonight I'm completely lost and I don't know what to do, this was a very hard day to go through. I woke up this morning at dawn with a very strong ache at my remaining testicle, a sore that extended itself into the back and front abdomen and that didn't leave me for a moment, and the usual stinging sensations at my penis, especially on the glans. There are three bad events that happened today and that scared me to death, and that are the following:

- The strange color of my urines, in fact I have noticed it' s becoming like orange instead of yellow (could it be micro-hematuria ????)

- A thin vain that I have never seen before on the skin of my penis, and that has a strange shape (it goes straight from the bottom to the center, then has a curve oriented to right and then becomes invisible, I have never seen it so far)

- A sort of white fat mass in the right part of my low abdomen, if I touch it I jump from the pain...

The only good news, if I can call them good news, are that I have tried to discover the glans once again (due to the phimosis, I was able to discover only the surface of it) and seems ok without lumps or lesions, even if both the glans and the foreskin seemed to me to be under congestion or inflammation.)

Only God, tonight, knows how much I would like to get some sleep and to stop thinking about all this stuff! On Thursday I will go to meet my urologist again, it's very hard to wait...

[cbvance]

Sounds like you have done all you can until you see the doctor. Obviously if the pain becomes unbearable go to see an emergency doctor. I had a lot of anxiety while waiting for the first pathology report so I asked for some anxiety medication, don't be afraid to ask the doctor for something to help that as well as the physical problems you are having.

As for the color of the urine did you take any vitamin supplements or herbal remedies? Sometimes those will discolor the urine, you may have some sort of infection, have you seen your white blood cell count?

I am praying for you Frank, hang in there.

[chemo boy]

I don't have a good grasp on what the pain may be though infections can be painful and nasty. The orange urine is probably from phenazopyridine hydrochloride. This is probably what the doctor gave you to releive the pain in the urethra. It will make urine very bright orange and can stain clothing. Very scary the first time you see it. The doctors will normally warn you :-) This drug is sold under many names and perhaps " Geridium" is the one that you have.

Make sure that you are drinking plenty of water or cranberry juice to help flush out possible infection. This could also make the pain lessen

Good luck and I will be watching for your reply. I don't get the chance to be on here often but I will check on you!

Rich

[frank1980]

Hi my friends... well, talking honestly I didn't take any vitamin supplement or herbal remedies. I took only a medicine that in Italy is called "Gladio" that has an anti-phlogistic purpose and that gives relief to the pains, I took it yesterday in the afternoon and his effect wasn't very efficient. Regarding the doctors, I must tell that here where I live, they are not the maximum in terms of psychologic sensitivity towards the patients and in terms of fast times in curing them. If I could tell my story to you, when I had the surgery for the orchiectomy, I told the evening before that I had this problem (I had a different kind of pain, it wasn't always present but I felt it very sharply) and the urologist always stopped me when I was saying this issue, repeating continuously to me "it's nothing, you haven't nothing, stop it now!". In fact the first who talked to me about a probable urethritis was my oncologist and not my urologist. Moreover, searching on the internet, I have found the symptoms of balanitis, and they were approximately the same that I was feeling and that I feel now. (irritating process at the glans, stinging sensation and random pains and so on...) I make any effort to discover my glans to check it for white grains or smegma tracks but nothing came out. When I had my urine tests, before the surgery, they came up clear and without any track of blood and also the wbc count was ok. Two days ago, when I went to the radiologic center to start the radiotherapy treatment (I didn't do it because the doctors, once that they saw the Pet scan result, suggested to me the surveillance protocol) I begged them to take a look at the image of my glans that resulted from the Pet scan and on these two damned spots that appeared on the peak of it. They assured to me that, as it was written in the result, they were only drops of radioactive urine and nothing else (in fact, when I had the scan, I went into the bathroom only once and drank a poor quantity of water). Anyway, before going to the center, I called once again the urologist to update him about my pains that became stronger in the days, and once more he said that I didn't have anything. Funny and sadly thing was that, if I tried to ask to him what could it be the cause of this pain, he repeated me like a looped vinyl disc "nothing, nothing, nothing" avoiding to talk to me about the reason. But, when yesterday I started to feel the pain at the surviving testicle and at the associated part of abdomen, I called him once again. He answered on the phone with a bothered voice tone, but when I told to him that things are going in a bad way, his words, that made my blood freeze once again were:

"Okay, come on Thursday at five o clock in the afternoon. I think that you have nothing, but maybe I forgot to visit you in a complete way your penis zone... but I do it as a personal favour to you, because, I repeat, you don't have nothing!"

So, I'm going to meet him tomorrow... the things that makes me scared are several, first of all that this doctor has a very bad behavior towards his patients... if you ask something to him once, he explains it to you in two words, if you ask him to repeat, he gets angry... For example, I have the problem of the phimosis and I can't discover my glans completely. When I do it, I can do it only for some seconds, then my head starts spinning, I feel sick and I have to recover it. I can't imagine tomorrow if he wants to discover my glans! When the main doctor of the urology unit at my hospital said that I had TC, he said it very toughly and without a word of psychologic sustain. Well, I remember that I was on the bed and I was feeling the whole world falling down on me, and the urologist, who was near him, that repeated to me "Hurry up! Hurry up damn! Get up from the bed and go outside to take the blood markers! We have other patients to visit and no time to waste!". Anyway, I swear that, if tomorrow he will behave like a beast, I will go away and find another urologist. A different speech has to be done for the oncologist (that I'm going to change too). When he gave to me the sheet with the blood test that I had to do, I have noticed that he excluded the Hcg from them, and moreover, I suggested him to include in the tests request the LDH and the PLAP. He was avoiding them! Thanks to God, I have found at the radiologic center some angels and not some doctors. I'm seriously thinking to continue there my cures and not into that hell!

Regarding the other facts, it's true, I'm not drinking too much water since I had the surgery, and probably this could be one of the causes that made my urine change its color in orange. I never took the Geridium, but I have seen the informations about it on the internet and I saw that it could be indicated in my cases (thank you Chemo Boy for the suggestion ). I will try today to drink more water... As for the thin vain, I have thought that probably it could be a thrombophlebitis, who knows...

The situation, so far, is stable. My pain at the remaining testicle has disappeared and I don't have a strong ache inside the penis. I feel it only scratching, like it has an irritation. Unfortunately I have to wait a day still, but I hope to get some answers from the urologist.

Of course I will keep you posted, by the way thank you for all the time you spend in reading my messages, it's important for me to talk with somebody!

Frank

[cbvance]

I think you should find another doctor. There is no need for them to have such a terrible bedside manner. Surely there at least one doctor who cares enough about the patient to speak in a kind manner.

Sorry you have to experience such abuse.

[chemo boy]

I strongly agree with CBVANCE!! Get another doctor. That bedside manner shouldn't be tolerated in any doctor.

Good luck!

Rich

[frank1980]

Hi Cbvance and Rich and thank you as always for your kindness in answering me. Some other updates for today, and that could be considered as good news: the pain at the interior part of my penis and at the glans seems almost disappeared, sometimes it comes up but it's very light and I can bear it, and lasts less than the other days, only two or three seconds approximately before disappearing and making me breathe a little bit. And as for the pain in the surviving testicle, I have noticed that, if I touch it, it hurts me and the pain extends to all the right part of my abdomen, but, at touching, I feel the testicle in its normal position and with no anomalies. I have read on the internet that there are cases in which, when a surgery for an orchiectomy is done, the doctors cut some tissues and nerves that need time to re-generate, and that's why they can produce some pains that can't be associated with a specific cause. I have hypotized, thus, that my pudendal nerve was yet inflamed when the seminoma was present (my testicle was in a state of torsion and "pushed" into the scrotum, so this could have be touched also the nervous terminals of the penis, and that, after the orchiectomy, the whole zone of the nerves (pain, testicles, perineum) have been damaged and they need time to recovery. These are only logic hypotesis that I'm making in my mind, but, on the other hand, there is the istinctive fear, the fear that you can't control, and that keeps on repeating "you have a second primitive cancer","you have something serious in your penis","tomorrow will be your death sentence", "don't you feel a lump inside your penis ???? look, it' s there !!!!" and so on...

Anyway, to continue the speech about the doctors, for sure tomorrow will be the last visit at the "beast-urologist". I'm afraid that, due to the phimosis and the difficulty to discover the whole glans and the whole penis, he will want to try anyway... of course, if he will "attack" me with his bad manners and will say to me to shut up, I won't do the visit and I will go away. Even if it was yet in my intentions to change the doctor.

I would like also to take the occasion, if I can, to tell you how these gentlemen told me that I had testicular cancer. I went on the 19th of February at the hospital (it was Sunday) and there was the "beast" in the urology unit. I explained to him my symptoms and he ordered to me to go on the bed to visit me. He started to touch the testicle and began saying something like "I see nothing abnormal","only I wonder why your testicle is so hard","for me is varicocele" and so on, and made me ultrasounds. When he ended, I got up on the bed and asked to him if it could be a cancer. He looked at me with a bothered expression and screamed "what are you saying? don't think about it!". But after he started speaking about "blood markers" (a thing that I have never heard before) and ordered to me to come back in the hospital the following morning to be visited to the primary main doctor of the unit. Well, I went back there, the primary asked to me to go down on the bed, started touching the testicle and yelled: "What he is doing still there? He needs recover NOW! This is cancer! His life is at risk!" (and, the saddest thing, he told it not to me, but to the urologists that were there). The urologist said that I had to do the tumor marker blood tests, and the answer was "for sure they will come back sky high! I'm sure! I gamble all my career!" All this while I was literally laying on the bed without physical and psychological forces. At this moment, the "beast" saw me and started clapping his hands and saying "Hurry up, damn! Go and do the markers! What are you doing still there? We have other patients to visit! Go in the another room!". I went in the another room in a sort of trance state, and there another doctor ordered to me to discover my arm in order to take my blood. I didn't have the strenght to make the punch with my hand to make my vain come out, and also this doctor, with a bothered tone, said "Tighten your hand! Come on!". He took blood and went away. Now, according to what the primary doctor told, seemed that my sentence of death was written. I left the hospital like petrified, and went outside (it was raining and I took an unexpected shower due to the rain.) At midday the hospital called me. Surprisingly the results of the markers were almost null. 1.9 Afp and Hcg less than 1 unit. When I went the following day for my recovery, I still remember that the primary entered into my room and talked to me with a very embarassing pose. He didn't look straight into my eyes for the whole time he talked to me, but (and this thing made me really angry) he said something like "It's seminoma! I have always thought it was! For sure your life can be saved! Come on there is nothing! You will come out without problems!"

Now, my surgery was scheduled for the day after. Anyway, during the first day at the hospital, I stood into the room, sometimes a caregiver entered to give me some pills for my allergies, and went away. I spent the whole day trying to "block" a doctor to ask him some questions, but everybody of them avoided me saying things like "I'm very busy","sorry, later","I'm going into the surgery room" and so on... The day after I was woken up very early and I was transferred into another unit to take RX and CT scan (I did the CT scan before the surgery and not after). Well, after doing these exams, I was moved into the surgery quarter. The surgeon asked to see the results of the RX test and the answer, from another urologist, was "we don't found them" well my friends, the surgeon answered "let's do the surgery without them". So the surgery began. I was under anesthesia and slept for the whole time. When I woke up, and when the surgery was ended, I was transferred again into my room and was put into bed. Of course the pains due to the wound were tremendous, and I spent the whole night on the bed in the same position, I wasn't able to move, the air in the room was very hot and the pillow was like stone (in fact, from the day after, I started to experience a pressing sensation at my head that sometimes come up still now). Moreover, I was forbidden to drink or eat because the bowel was not working due to the anesthetic medicine, and I started to feel really weak and thirsty. The day after, and this thing made me really angry although I couldn't react, the "beast" come into my room and said "Stop playing the part of the terminal ill person! Go get up from your bed! You are fine, you don't have nothing!" I couldn't do anything except receiving his words and accept them in silence. But in the night time, since I have heard that some caregivers would have helped me in getting up, I decided to try by myself, even because the whole body couldn't stand the position I was. So I tried to get up, won my pains and was able to walk a little bit. The day after, at dawn, caregivers went into the room to get me up, but when I heard one of them saying to another "let's get him up,c'mon..." I refused their help, said to them "no thanks, I have a dignity and I will get up by myself" and I did it.

Another thing that scared me to death was when, after the surgery, blood became coming out from my wound. I didn't know that the cause was the wound drainage, and that it's normal, so when I saw a big blood spot on the bed sheet, I called a caregiver who came in with a doctor. The doctor saw the blood and said to me "why did you call me for this nonsense?" I asked him why all that blood, and the answer was simply "it's normal", then he said to the caregiver to change the medication and nothing else.

Tomorrow I have to go back in that hell to front this urologic visit. I have sworn to myself that if the "beast" will do also the minimum bad thing, I will say to him a big "**** you" and I will go to a serious urologist. This is for sure!

A big thank to everyone who will take the patience to read all this stuff of mine! I hope to bring to you all good news tomorrow!

Sincerely!

[frank1980]

Updates for today: I went to the visit and I found the "beast" waiting for me. A visit that had lasted a minute! A quick eco at my remaining testicle, some touches at the penis, the examination of the mass that hurts me ("ooooo this is a cyst!") and the words "your pains are only psychosomatic". Really, I have had the idea, at that moment, to kick him and to ask him if that pain was psychosomatic too... anyway, I'm going to find a new urologist as soon as possible!

All the best to you all!
Frank

[cbvance]

You my friend have a lot more patience than I do. I would probably have cut their balls off and then asked them how much they liked it if I had been subjected to such abuse. I was fortunate to be treated with kindness and dignity through the operation and recovery, the incision was very clean and all sutures were internal and a plastic wrap was glued over the top of it and remained there until healed.

I think a doctor like that in the US would soon be bagging groceries for a living (or perhaps a job castrating bulls) because no one would go to him.

Sorry for all of the terrible treatment you have suffered, hopefully the next doctor you find has a heart and is not a total moron as this one must be. we are people not machines and have the right to be treated with dignity and respect.

[frank1980]

Hi my friend Cbvance! Do you know what is my problem? It's simply that, when I'm facing some kind of persons, I loose the strength to answer to them, the words don't come out so I stand in silence and I feel without defenses. Today, for example, the "beast" allowed me to talk only thirty second, interrupting me every time and saying "Hurry up, c'mon!" Well, I explained to him half of my situation (ah, I was forgetting that he received me with an ironic smile and said "now, what's your new problem?"). then he put me down on the bed and touched my penis for almost ten seconds. Then he made my glans come out (I think he did, because I didn't see anything), touched again, then did a quick ecography at my natural testicle, and said this: "Your pains are only psychosomatic, the penis is ok, your ball [sic !!!] is marvelously well, so you now have to stop with these pains!" I didn't reply to him but I stop watching him and went away without greeting him. Probably he realized that I got angry, so he blocked me and said "If you want to talk and need another visit, you still have my cellphone number", well, I looked him and said "oh no dear eminence, I don't want to disturb you with my psychosomatic disturbs, who knows probably also my seminoma was psychosomatic, anyway I promise to you that by now I disappear from your life because I don't want to bother you and will go to see a real and serious and most of all POLITE urologist". He saw me with a surprised pose, then I took my sunglasses from the table and went away.

Anyway, even if I have a lot of doubts about his opinion, I feel a very little little bit more relieved since very probably that "mass" that hurts in my abdomen could be really a cyst and that my penis has nothing abnormal (I repeat, I have doubts because I don't believe about what the "beast" said to me, but it at least helps my mind in resting a little...) For sure, in the United States, these kind of doctors would be erased from the professional album, I'm 100% sure about this fact... and also, if I can say, I think that those situations happen only in the southern Italy where I live, since at north and at center Italy seems to be into another planet.

Anyway, I would like to count a thing that happened during my presence there in the hospital: A patient was transported on a stretcher, he had very high fever and difficulties in breathing (although I didn't see the oxygen cylinder, but probably I was distracted). Well, the doctors saw him and asked to the accompanist what unit send them there in the urology unit. The accompanist answered that they was sent there from the first aid unit and that, since all the units were full, the only free place was in the urology unit Things that make you without words! (not to talk about caregivers who transported the ill persons in the surgery room wearing a BANDANA on their heads and not the protective mask, cellular telephones that keep on ringing continuously while in the surgery quarter their use is forbidden... and I stop here...)

Now, I'm trying to relax a little bit my mind by doing something, even if it is not simple, anyway I'm trying... for sure I don't want to give up and let the sadness come out...

Have a good evening!
Frank

PS: I forgot another thing, I talked a moment to the "beast" urologist about the seminoma and the radiotherapy that I have avoided, he answered that it was the right choice (but later added than if I would have done it I had the same percentage of relapse compared to surveillance), when another doctor came into the studio. I was with my penis out and with my underwear down when the "beast" started talking to the colleague, so the result was this: the colleague disagreed to my surveillance choice, the beast sustained the contrary, at the end they have quarreled between them... and I was on the bed with the "family joy" standing in the air...

A warm hug again!

[Already Bald]

...the examination of the mass that hurts me ("ooooo this is a cyst!")..

Was he able to give you any explanation or expectation of treatment plans for the cyst?

Wishing you luck with the second opinion!
Joe

[frank1980]

Hi Joe, and nice to meet you! As you could probably imagine if you have read what I have written, he didn't suggest to me any kind of treatment and said "don't think about it, it will pass by itself". At this moment I have collected some informations on the internet about which could be the possible treatments for a sebaceous cyst, then I will go to my basic doctor (I don't know how to say it in English, it's my family doctor in other words...) and I will discuss it with her (the problem is that, to discover this cyst, I have to get down my underwear, and I feel ashamed since my basic doctor is a woman...) Anyway, standing on what I have read, if the cyst hurts and has a white color, it can't be cured, but I'm not sure...

Have a nice time once again!

PS: Please let me allow me another fact, this time is a funny fact and I would like to count to you all so hoping to make you smile. When I went to the radiologic center in order to make the radiotherapy simulation and to be targeted with tattoos, I was received by a female doctor, a very cute and good looking girl (and also very kind and polite). She asked to me if I had some questions or I was suffering from some pains, and there I had one of the most difficult moments of my life. I started saying: "well, I have a problem, but I'm unsure if I can say it to you, you are a woman..." and she answered "don't mention, I'm a friend of yours but also a doctor, so don't be ashamed, c'mon" (with a huge smile, I was melting...) so I answered "okay... I have some soreness and pains at my... [cough]...). She looked at me, smiled again and asked "at your ???", and I repeated again, "at my... [then I coughed again looking to the floor]". Once again she asked where I had this pain, and my answer was "at the lodger who lives downstairs". She understood perfectly!

[chemo boy]

Sorry to be away but I got hit with a stomach virus

A little insight from someone(me) in the health care field. I always tell my patients/clents that they are NOT an interuption to my day but the WHOLE REASON FOR IT!! With out them I would have no job. I'm sorry that your doctors are too busy to take time with you. Perhaps they should be addressing your anxieties and perhaps suggest counseling. Anxiety is very common with cancer survivors. Not saying that this is your case just that this is how they should be thinking.

I wouldn't waste another visit on a doctor that you don't have faith in. Just get a new doctor. This has to be done now and you shouldn't even have to face the old one to do it. Take controll. This is your life and health. You can't controll how other people treat you BUT you can controll how you react to it. A tough friend of mine from New York City once said to me "You can't f~~k me if I don't lie down". Good words to live by in this situation.

Good luck!!...and keep standing

Rich

[cbvance]

I am laughing so hard I might pop a stitch!! Frank I am proud of you! It's time for you to stand up and make sure you are not so maligned.

I am also being urged to take radiation but I have not decided yet. I have an appointment with an oncologist that does not have the word "Radiation" in front of his name.

[frank1980]

Sorry to be away but I got hit with a stomach virus

A little insight from someone(me) in the health care field. I always tell my patients/clents that they are NOT an interuption to my day but the WHOLE REASON FOR IT!! With out them I would have no job. I'm sorry that your doctors are too busy to take time with you. Perhaps they should be addressing your anxieties and perhaps suggest counseling. Anxiety is very common with cancer survivors. Not saying that this is your case just that this is how they should be thinking.

I wouldn't waste another visit on a doctor that you don't have faith in. Just get a new doctor. This has to be done now and you shouldn't even have to face the old one to do it. Take controll. This is your life and health. You can't controll how other people treat you BUT you can controll how you react to it. A tough friend of mine from New York City once said to me "You can't f~~k me if I don't lie down". Good words to live by in this situation.

Good luck!!...and keep standing

Rich

Hi Rich, first of all let me say to you that I'm sorry for this stomach virus, of course I hope you will be in a good condition very soon. The words that you have said are really true, in fact I have seen the doctors at the radiologic center and they are at the opposite side of the diameter. In fact they are very kind, they listen to their patients, suggest them the best way to act and to arrange a treatment and so on. And probably it's true also that the way of acting of the "beasts" at the urology unit has conditioned me psychologically, thus when I feel any kind of pain and I receive a "you don't have nothing" as answer, it's quite logical that this pain increases. Anyway I'm finding a new urologist, I'm searching on my city but also outside, hoping to find a kind and polite person. Moreover, another thing that will make you smile or laugh, is that yesterday the "beast" said I had a cyst. I looked on the internet and found that I don't have a cyst, rather it's a lyphoma!

I am laughing so hard I might pop a stitch!! Frank I am proud of you! It's time for you to stand up and make sure you are not so maligned.

I am also being urged to take radiation but I have not decided yet. I have an appointment with an oncologist that does not have the word "Radiation" in front of his name.

Well my friend, if I can express my point of view to you (of course I don't want to put you in anxiety), if I were you, with that external iliac node, I would have done the adjuvant radiotherapy treatment. I know it could be dangerous for other reasons, but if your CT scan unfortunately showed it, I don't think that I couldn't resist in surveillance. But, of course, every person is different from another, and probably (I'm praying for it) that node would disappear or it was only a shadow, logically this is what I wish for you (I repeat again, I'm telling it to you as a friend or a brother, it's only a suggestion). Anyway, I'm glad that I make you laugh, I think we deserve also to smile a little bit, don't you think so? Regarding me, this morning I'm not experiencing particular pains (apart from an IBS attack that came to me at dawn, but I live with them since years) and I'm ready to face also this new day. Let's hope that everything will be all right and without obstacles!

Have a nice day!
Frank

[frank1980]

A little update for today: Seems that the pain at the penis has disappeared, in fact during these days I haven't felt anything. But the bad news are that, for a pain that goes there is one that comes, and in fact now I'm feeling aches at the right kidney, it takes the right part of the abdomen, the right testicle and extends to the arm. The doctor said to me that there is nothing to worry about and that I have the Pet scan that speaks clearly. Maybe they are to be related to the weather change? who knows...

See you very soon!

[Rush67]

A little update for today: Seems that the pain at the penis has disappeared, in fact during these days I haven't felt anything. But the bad news are that, for a pain that goes there is one that comes, and in fact now I'm feeling aches at the right kidney, it takes the right part of the abdomen, the right testicle and extends to the arm. The doctor said to me that there is nothing to worry about and that I have the Pet scan that speaks clearly. Maybe they are to be related to the weather change? who knows...

See you very soon!

Are you dehydrated, possibly?

[frank1980]

Hi my friend! I don't think to be dehydrated because I'm drinking the normal quantity of water that I use to drink everyday (one liter approximately). On the other hand, I must say that I stopped to eat foods that contains sugar when, a month ago, I discovered to have the sugar level in the blood at 110 (at the limit) and the GPT level exceeded of 9 units (49 instead of 40). I have thought that probably the lack of sugar could be the cause... (I also add a quick down fall of my sight at my left eye...)

Have a good Sunday and thank you for your answer!

[cbvance]

I thank you for the suggestion, I just have a resistance to radiation. I can't see being cured of TC only to have some other more dangerous cancer in 15 years. I am visiting the medical oncologist on Tuesday May 1st (May Day! May Day!) and will wait to see what he advises, I think as for myself I want to wait and have another CT in 3 months and see what the illiac node is doing. The urologist seemed to think this was nothing to be concerned about as it was on the same side as my "pelvic" kidney and not in the testicular region. If the node is growing than obviously radiation or Chemo will likely be needed.

[frank1980]

Hi Cbvance! Well, I think that you have to speak to your oncologist about your doubts that are related to radiotherapy treatment. Standing on my personal experience, the doctors at the radiologic center explained to me that unfortunately the radiotherapy can produce other cancers in the lifetime, so it's better to avoid the radiations in a first stage seminoma. There is also the other side of the medal, I mean that with the radiotherapy treatment you will have more safety and you can keep a relapse far from you. I know it's a hard decision to make but I think we have to consider the positive and negative effects of both the two choices. Speaking personally, now I have chosen the surveillance and I know that the risks of a relapse are higher than the risks of a patient who has a radiotherapy treatment. I must admit that at first, when I exited from the hospital, I started to think about an adjuvant radiotherapy treatment and I always told myself that I would have done it in every case. But when I heard the radiologists saying to me that apart from the risk of a relapse there is also the risk of having a new and separate cancer produced by the treatment, I had a moment when I thought more than twice. And I came to the conclusion to choose surveillance. But be sure that, if my first Ct scan and my first Pet one would have showed to me any kind of unknown spot or node, I would have decided to have the rays without thinking more. I started to have a personal idea about choosing between surveillance or adjuvant treatmens: in a few words, in a state of all clear, I think it's better to suffer psychologically and not physically, an anxious state will pass without treatments but taking a deep breath and trying to relax our minds, a second cancer no. On the other hand, although I chose the surveillance, even if all the doctors had told me to put my mind in rest, the two spots of unknown origin that the Pet showed on my glans are still present in my thoughts. Are they drops of radioactive urine that now have gone or not? Who knows? Am I exposed to the risk to have a total penectomy? (nooooooo for heaven's sake! ) Anyway, I hope that this unknown node that you have will soon disappear or will reveal itself as a shadow or something that can't produce dangers. I hope this for you very sincerely!

Keep me posted also in private if you want... and good luck!

Frank

[frank1980]

A quick update for today, a very hard day to go through because it was very warm and now I'm feeling very tired and need to take a rest for some hours. Surprisingly, I had no particular pains today and everything seemed to be fine. A moment of fresh air breathing...

Talk to you all later!

[frank1980]

Two words also for today: the pain at the kidney and at the back right part of the abdomen, including my right testicle (tonight also the peak of the glans hurted for some moments), has extended to the front abdomen and I was feeling very scared because this pain increased when I drank a glass of water this morning. But I said to myself that I had to be calm and quiet and that I had to win this pain and the nausea that for sure were psychosomatic. Believe it or not, not only I was able to drink other glasses of water, but I had also my lunch (I ate at the restaurant today because in Italy today is a holiday) without problems! Also, I would like to add that this morning I went out for a little walk since here is a very warm and sunny day, when I was outside my home the pains started and I felt weak. Well, I managed to remain strong and to do my walk without letting the pains prevail, and I won this challenge!

[Rush67]

I've been having some pain in my right side, and middle-right of the back. It doesn't hurt real bad. Just tingling. I went to urgent care because I thought maybe I was having some kidney problems due to the chemo. They did a urine test, and didn't find anything, then they did a chest x-ray, just to make sure there's nothing in the chest. Luckily they didn't find anything. The doctor thinks my liver is pissed off becaue of the chemo, and to get with my oncologist. I have a bunch of labs tomorrow, so we'll see what happens.
Fun fun fun.

[frank1980]

Sorry to know that you are having these problems my friend, and I know that sometimes there are days when we have to do every kind of tests and we have to wait for the results. Anyway I wish you the best and good luck for these days, and I wish that everything will be all right and that your pains will disappear very soon! Always remember that luckily your tests came out negative and there are no anomalies, this is the first good sign. Thanks for the reply!

[Rush67]

Sorry to know that you are having these problems my friend, and I know that sometimes there are days when we have to do every kind of tests and we have to wait for the results. Anyway I wish you the best and good luck for these days, and I wish that everything will be all right and that your pains will disappear very soon! Always remember that luckily your tests came out negative and there are no anomalies, this is the first good sign. Thanks for the reply!

Yeah Frank, if it's what he thinks it is, then I'm not too worried about it. It'll be fine, eventually. I hope you get to feeling better, as well. It sucks not knowing what the heck is wrong, and what's causing the pain.

[frank1980]

You get the point my friend! From my personal experience, I can tell you that I'm starting to accept that sometimes the pains have also a psychological origin. Not in all the cases, it's true, but in some occasions this could happen. I have noticed it today, when I ordered to myself not to think about the pains I was having, and they disappeared. (even if still now I'm wondering how was I able to do it). I think also that if we keep on touching and exploring ourselves continuously, things can also get worse because the psychologic aspect increases and we feel pains everywhere.

[Rush67]

You get the point my friend! From my personal experience, I can tell you that I'm starting to accept that sometimes the pains have also a psychological origin. Not in all the cases, it's true, but in some occasions this could happen. I have noticed it today, when I ordered to myself not to think about the pains I was having, and they disappeared. (even if still now I'm wondering how was I able to do it). I think also that if we keep on touching and exploring ourselves continuously, things can also get worse because the psychologic aspect increases and we feel pains everywhere.

You know, Frank, stress causes alot of aches and pains, as well. Just worrying about it can make it worse, and will drive you crazy. Sometimes I just try stay as busy as I can, and focus on other things. Sometimes, that's easier said, than done.

[frank1980]

I totally agree with you my friend. Tomorrow I will have my blood values checked (even if I don't take them because it was told by the oncologist, I do them only to have a personal safety and to check the values of my Afp hoping that they have decreased). Anyway, I'm trying in these hours to be strong phsychologically, and I have tried to "move" with some activities and to be busy... even if the pains are still present.

Have a nice time!

[Rush67]

I totally agree with you my friend. Tomorrow I will have my blood values checked (even if I don't take them because it was told by the oncologist, I do them only to have a personal safety and to check the values of my Afp hoping that they have decreased). Anyway, I'm trying in these hours to be strong phsychologically, and I have tried to "move" with some activities and to be busy... even if the pains are still present.

Have a nice time!

Brother, I'll be praying for your labs to come out normal, for your tumor markers to be low, and for you to have peace of mind, heading into the weekend.

[frank1980]

Thank you very much brother! I pray for you too and I hope that you may have only good news from the following controls that you have to do. Now I have just come back from the "vampire' s house" that took the blood, and I was surprised from a thing that the doctor said to me: in poor words, since have passed only 44 days from the first test, I must have waited a little bit longer and that I hurried myself too much. Probably it's true because this time I wasn't scheduled by any oncologist (I'm changing him and I'm going to meet the new one on the next week) and I decided to have this control by myself... Another thing that is at the same time sad and funny is that I feel my remaining natural testicle like it's swollen and it hurts... I did an ultrasound scan when I went to the "beast urologist" for the penis related problems and he said that the testicle is "marvelously well and in shape"... what can I say, probably I'm fixed too much on touching and exploring it during these last days because of the pain that has appeared in my flank and psychologically I can't get out of this trap... even if I know that an increasing of the size in the remaining testicle and the pains after an orchiectomy can be considered as normal, the irrational part of me (the instinct) is very frightened... Anyway, I don't surrender...

Have a nice weekend!

Edit: a last minute update, very probably in the next week I will go to an appointment with the main primary doctor of the urology unit (the same doctor that diagnosed the cancer to me and that saved my life, although he was rude when he said that I had cancer, but I have only to thank him...). I find him more kind and polite and probably he will clarify all my doubts... I'm only undecided to take the appointment right now, or to wait until Monday from the blood test results to come...

[frank1980]

A quick update for today, that seems to be a better day than yesterday. In fact yesterday I had for the whole 24 hours a very tremendous pain at the low rear right part of my abdomen, that extended to the natural testicle and to the right part of my leg and up to the kidney. At the time of 10.30 pm approximately, I fell down from the pains and put myself into bed to take a rest. Thanks to God, today, the pains are more more more more bearable and had become lighter (I'm having some "flash" pains at the bowel and the stomach but couldn't be anything...) I was thinking that probably the cause could be that I stood firm without moving for two days after the surgery in the hospital bed that had a mattress very hard, like a stone and that my sciatic nerve has inflamed... Today I'm feeling better so I also go out for a walk and try to distract and relax myself while waiting for the blood test results. As far for the right testicle, I tried to touch it once again and it seemed to me not really swollen but in its normal position and dimension. Who knows?

[frank1980]

... And finally the results came! Let's say that the values are little increased but (except for one) they are all in the range, In particular:

- 10% Ketone bodies present in the urines
- 3 Leucocytes in the urines
- Conjugated bilirubin up to 0,33% (maximum range 0,25%, the unconjugated is ok and the total is 0,91%, increased from 0,71% but the maximum of the range is 1%)
- Sodium up to 149 from 145 (maximum range 150)

And here are the values of the tumor markers:

- Afp down to 1.2 from 4.4
- Bhcg up to 1.1 from less than 1
- CEA up to 3.3 from 1.5

Unfortunately, I don't have the results of the LDH value, because when I requested them on the answering machine that my doctress uses, she understood another thing and wrote "RTH" (that is another kind of test) on the ordering.

The good news are:

- Sugar level down to 101 from 110 (maximum range 110, so I was on the limit)
- Gpt transaminase down to 31 (maximum range 40, I was at 76 then at 49)
- White cell counts and red cell counts perfectly in the range (only the platelets are little elevated because they are regenerating the tissues cut by the surgery)

Anyway, even if all those values are a little bit increased, I don't worry because I'm still in the range except for one value...

Have a nice time!

[Rush67]

That's great Frank! It looks like everything is normal. I did pray for you.

Hopefully you'll have some peace of mind now.

[frank1980]

Thank you my friend! If I can say a thing to the persons which will have the patience to come here and to read this thread, I would like to invite them not to feel worried if they see light alterations in the urines values or in the bilirubin and so on. It could be normal after a surgery, so no matters!

PS. now I need to sleep a little, I think I deserve it

[cbvance]

I am happy for your results. Sleep is a good thing.

[frank1980]

A last update for today: I was wondering if this 10% quantity of ketones in my urine, the three leucocites and the "rare tracks" of Epstein Barr virus in the urines could lead me to be diabetic too, even if there are no proteins, glucose, nitrates and blood tracks detected. On the other hand, there is that 101 of sugar level that doesn't allow me to be completely relaxed even if it's in the range. Could it be a pre diabetic state ???? Or a matter of high protein and low carbo diet ???? Or the lack of sugars since I don't eat anymore biscuits, cookies and so on ???? Anyway, tomorrow I will ask to my doctress...

Thank you Charlie for your answer before!

[frank1980]

Back again, dear friends, with some updates: In order to make the ketone bodies go away from my blood and urines, I'm drinking a lot of water and trying to eat some more sugar foods and citrosodine to lessen the nausea. I also did a quick screening of my sugar levels in the blood and, since there was the risk to be in a pre diabetic condition, I have thought to monitor it every morning... well, here are the results of all the tests, starting from the first:

110 (range limit)
98
94
101 (borderline, here the ketones have appeared inside the urines)
99
76
83
89
91

So, seems that I'm in the normal status now, apart from these three borderline values detected (101-98-99 after the starting 110). My only question (and since now the doctors gave to me different answers) is, with these values and with the ketone bodies, I have to eat sugar foods and carbohydrates in order to make my pancreas and liver work properly and throw away the ketones, or to avoid them because the sugar level values could increase and the ketones may remain. This is a dilemma!

Other news are the meeting of the new oncologist in a few hours (in fact now I'm taking the train to go). I will keep you posted!

Have a nice day and weekend!
Frank

PS: Following a strict diet while being psychologically under pressure for the cancer matter is simply unbearable!

[frank1980]

Back again from the doctors and the first meeting with the new oncologist... thanks to God he is a very kind and polite person, and also the doctress who will follow me is a very kind person. They saw all my documents and reports and assured me that there are no worrying elements, and encouraged me (they say "as friends and not as doctors") to have a single carboplatin round, that will last two hours, to increase the probabilities of being cured up to 99,99%. They explained to me that I'm yet cured and I don't really need an adjuvant treatment, but, since a rete testis invasion was detected, and it could be a possible disturbing factor in my follow up (in other words, it's the only potential element who can bring problems in future) with a single carboplatin round it would be neutralized and I could be considered with a leg and a three quarter out of danger (the speech they did to me was "You can avoid it, there will be no problems, but listen to us, we are talking to you like friends and not like doctors, if you want to put completely your mind in rest, do it... you have done so much with your efforts so far, so do also this last effort!"). So, instead of surveillance, I have chosen to have this infusion, I think it will be done on the next Wednesday... For the other problems of the sugar values in the blood, the oncologist and the doctress said that there are no worrying elements also there...

Have a nice time!

[frank1980]

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