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  1. #1
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    someone could help me please

    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

  2. #2
    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.

  3. #3
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    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,
    Kat
    _______________________________________________
    Caregiver
    DX 5/15/09
    Left orchiectomy 5/22/09
    60% embryonal, 40% seminoma, w/ VI, LI, T2 (CS-IB)
    CTs clear, X-rays clear, blood markers normal
    L-RPLND 7/14/09, San Antonio
    3 nodes positive, 100% embryonal, N1 (PS-IIA)
    2 rounds BEP August 24, 2009, Austin
    Enlarged lymph nodes Oct 09, Dec 09, Jan 10, Apr 10
    All clear 10/01/10

  4. #4
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    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
    Last edited by frank1980; 04-21-12 at 05:22 AM.

  5. #5
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    Fear

    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.
    03/16/2012 Ultrasound Diagnosis TC (Tumor 5.5 cm)
    03/22/2012 Right I/O Pre-IO markers normal
    03/28/2012 Pathology Classic pure Seminoma, pT1/N?/M0/S0
    04/05/2012 CT Scan--Clear? (single 1.2 cm node External iliac)
    05/03/2012 PET Scan CLEAR. All markers Normal.
    05/04/2012 1 X CARBOPLATIN INFUSION (Chemo Lite)
    09/02/2012 CT All Clear! (1 cm External Illiac Node)
    04/04/3013 CT All Clear!

  6. #6
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    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...

    Quote Originally Posted by cbvance View Post
    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
    Last edited by frank1980; 04-21-12 at 10:04 AM.

  7. #7
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    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!

  8. #8
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    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!
    Last edited by frank1980; 05-11-12 at 03:21 AM.

  9. #9
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    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!
    Last edited by frank1980; 05-11-12 at 11:50 AM.

  10. #10
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  11. #11
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    great news

    So glad to read you are finally comfortable with your doctors and are being treated with the proper respect you deserve. Good luck with the final step in your journey.
    23 yr old son diagnosed Jul 2009
    Right I/O 5 days after ultrasound
    Stage III Non-Seminoma mixed 85% EC, 15% Yolk Sac and immature teratoma
    Mets retroperitoneal lymph nodes and lungs
    Began 4 X EP Aug 2009 Completed Oct 2009 Sloan Kettering
    Lung mets resolved, lymph node mets reduced to sub centimeter and markers normalized
    RPLND 11/20/2009 Dr. Sheinfeld, pathology 2 nodes positive for live cancer
    2 more rounds EP Jan 2010 - Mar 2010
    Surveillance at Sloan Kettering - ALL CLEAR TO PRESENT

  12. #12
    Frank,
    Are you diabetic? I can explain ketones (ketone bodies). Ketones are chemicals that are formed by the breakdown of fat. Acetone, beta hydroxybuteric acid and something else, I can't recall. They are all similar.

    In a diabetic person, they are unable to metabolize glucose for energy, so the body goes looking for another source of energy and finds the stored fat and starts breaking it down. This would be great except that the by product of hyperketosis is acidosis - the blood becomes acidic and the body tries to compensate by changing the electrolyte (sodium, potassium, chloride and carbon dioxide) balance and excreting extra water along with the sodium, and carbon dioxide is breathed out in the air.

    In a non diabetic person ketosis may occur during normal fasting, or extended fasting, as people usually fast before blood is drawn for testing. In an overweight person trying to diet, the ketosis is normal as well.

    Once the fat is gone the ketosis will stop but the body will go and break down the muscles, and that is another story.

    Anyway, in a nutshell, don't worry about your ketones unless you are diabetic and having a major blood sugar problem.

    Maryann

  13. #13
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    Carboplatin

    Quote Originally Posted by frank1980 View Post
    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!
    Good choice Frank. I am now one week out from my infusion and doing very well. Supposedly the full effect on my blood is between 10-14 days so my counts may drop a bit yet before recovering but the shot of neulesta spiked my white counts up quite a bit. I still feel a bit tired and draggy but nothing like day 3 and 4, those were the worst for me so be sure to get plenty of rest and drink lots of fluids. Hot Baths are great for bone and joint pain.
    03/16/2012 Ultrasound Diagnosis TC (Tumor 5.5 cm)
    03/22/2012 Right I/O Pre-IO markers normal
    03/28/2012 Pathology Classic pure Seminoma, pT1/N?/M0/S0
    04/05/2012 CT Scan--Clear? (single 1.2 cm node External iliac)
    05/03/2012 PET Scan CLEAR. All markers Normal.
    05/04/2012 1 X CARBOPLATIN INFUSION (Chemo Lite)
    09/02/2012 CT All Clear! (1 cm External Illiac Node)
    04/04/3013 CT All Clear!

  14. #14
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    HI Charles! Thank you for your advices, you are very kind as always... I think that the dosage of carboplatin that I will receive is different than yours, because, standing on what the doctors said to me, they explained to me that is an unique session of one day and not more. As far as I have understood, you have had a cycle, while I'm going to have only a shot. However, I will keep you informed! Thank you once again and have a nice weekend!

    Frank

    PS: 97 of sugar level this morning. Seems like everything is all right...

    PS to PS: if I can say this, please allow me, I'm very angry with the beasts of the urology unit that made me the surgery. They said to me so far that the tumor had a size of a few millimeters and didn't attack anything, but only yesterday I have known the truth... Thanks to God, I trust these new doctors that will follow me with my cures, but I'm wondering why the urologists said to me a lie. They don't know that, doing this, the persons can loose the faith in them ???? And moreover, even if I'm out of the necessary time to have a treatment, I will have it the same... "better later than never..."
    Last edited by frank1980; 05-12-12 at 05:58 AM.

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