TC-Cancer.com - Testicular Cancer Information & Support Forum

Mri

Russell's Mom — Fri, 20 Nov 2009 20:15:48 GMT

Worth discussing with you doctor...and of course the insurance company!!

http://www.clinicalradiologyonline.n...460-1/abstract

Also recently diagnosed

scruffy — Fri, 20 Nov 2009 18:34:47 GMT

Well, I went to the urologist on Wednesday and got the diagnosis of a tumor in my right testicle, so I am now scheduled for an orchiectomy on Monday, Nov 30th, since I am out of town all next week for the Thanksgiving Holiday in the US. I hope that's not a problem, the Dr didn't make too much of an issue of the timing, but it seems from reading the forum that most people have the orchiectomy much sooner after the initial diagnosis, usually within a few days, not almost 2 weeks later.

I have to say I was pretty blindsided by the diagnosis since my original symptoms were pain and swelling of the testicle, and I had been told by my General Practice dr that pain and swelling were not indicative of testicular cancer. After taking the antibiotics, and the pain and swelling were reduced, I did notice that my right testicle was still slightly larger and appeared more firm than the left, but I thought that might be some side effect of the infection. My GP scheduled an ultrasound and then sent me off to the urologist the next day ... I was expecting to hear 'just keep taking your antibiotics' so it was quite a shock to hear that it was a tumor / cancer. In retrospect, the fact that my GP personally called this urologist to make the appointment, then he contacted me with the appointment information should have been a clue it was more serious than an infection.

I'd done somewhat regular testicle exams previously, but was always looking for lumps and not necessarily a change in texture or hardness, so maybe I missed it earlier ... the pain and swelling symptoms started about 2 months ago and that prompted me to get checked at all.

My urologist, and other dr's I've spoken to since the diagnosis, have talked me out of getting a prosthetic. My initial reaction was 'of course I'll have the prosthetic' but I've since been told it can cause problems healing, or over the years it can become detached and move places it shouldn't. Is there a statistic on how many decide to go with the prosthetic? I was led to believe it was not common to get one if you are just having 1 testicle removed. I guess I am ambivalent on the subject; it would be nice to have, but I don't want something that could cause more problems down the road.

Given my initial shock, I really didn't have a clear head to think of question to ask, so I was wondering, from people who have had the procedure, is there anything you wished you had asked your dr before the surgery? Or any recommendations on questions to ask or steps to take leading up to the surgery and subsequent aftercare?

I'll continue to read and research, although I don't think there isn't much I can do now until after the orchiectomy and a determination of what kind of cancer it is, and what course of actions to take from there. By the way, this forum has been great to read, besides all the information, the positive attitude everyone has, and the generous support people provide makes this difficult time a little easier.

Thanks!
L

% chance of relapse after BEP?

suzywoo — Fri, 20 Nov 2009 18:08:23 GMT

Hi Folks

My brother is responding exceptionally well to chemo and his HCG is now only 7 at the half way point in his 4 cycles of BEP. His AFP is normal. This is of course fantastic and we are very grateful.
Thoughts are now turning to the future and his risk of relapse after chemo. I have tried to find statistics on this but they're few and far between. Do any of you guys know the % rate of relapse after BEP? Because his markers were initially high he was put in the intermediate prognosis group. He has non seminoma, very mixed tumour, mainly teratoma, with a bit of choriocarcinoma in the mix.

Many Thanks
Sue x

Happy Birthday Smartie!!!

Fed — Fri, 20 Nov 2009 17:23:29 GMT

Happy Birthday Smartie!!!

Wishing you a brilliant day!!!

sigh of relief

Itsadeepbluesea — Fri, 20 Nov 2009 14:09:15 GMT

My mom had a mamogram come back abnormal in august, and when they did the biopsy they discovered some abnormal cells. But I'm happy to report that after a small surgery they have determined that it was not cancer. :D

why downplay rplnd?

imagination1218 — Fri, 20 Nov 2009 05:57:16 GMT

Hi,

First-time poster, long time lurker. I'm 18 and was diagnosed with tc (confined, left) in Feb of '08 with non-seminoma, yolk sac, embryonal, and teratoma and had 3 enlarged lymph nodes. got an orchiectomy, followed by rplnd. (bosl and sheinfeld = the A-team)

after the removal of 30something lymph nodes, I'm cancer free. Surely a walk in the park compared to a lot of you, I imagine. One thing that I just wanted to point out to those considering the rplnd - DO IT [if it's recommended], BUT realize that everyone reacts differently to surgery. there are some guys I know, like a lot on here, that took this surgery like water, they say they were back on their feet in no time. For what its worth, I'd like to share how my experience was dreadfully unpleasant.

a full 6 month recovery, the first month being unbearable. for the first 9 weeks, I was on the highest dosage of the most powerful pain medications - didn't help one bit. just had to wait it out. I really emphasize the extraordinarily heightened level of pain, this being my #1 most painful experience ever. I'd say 200x more painful than a foot getting completely run over by an SUV (which happened to me the year prior, that HURT). anyway, it was certainly no walk in the park for me.

now, there could be a number of reasons why I endured a much harsher recovery. for example, I didn't get staples as I opted for a cosmetic closure. takes more time to seal up the incision, leaving my innards exposed that much longer. Also, from the pictures posted, I noticed that many had smaller rplnd incisions; mine starts right where the sternum terminates and ends at the base of my shaft, a good 1 & 1/2 ft in length. [its no damn competition, im just searching for reasons leading to a more traumatic recovery] I was 17 and maybe I just don't heal well. When I get sick, I get SICK. even a common cold hits me hard. perhaps its just my body that doesn't respond well. in any case, be familiar to how your body reacts to any particular surgery you've had, and the time it takes to heal. I am very thankful for this surgery, my doctors, the localization and simplicity of my cancer.

I wish everyone well and an easy recovery,
-Bill

Just Diagnosed today....

gilly6993 — Fri, 20 Nov 2009 03:40:39 GMT

Got the news that my swollen left inguinal node was positive for seminoma.....I go for an ultrasound tomorrow as well as go to the Urologist.....surgery probably soon thereafter....

Happy Birthday richy77 !!

Smartie — Thu, 19 Nov 2009 21:42:56 GMT

Happy birthday, Richard!!

Hope you've had a great day!

What to do.

seanmmcc — Thu, 19 Nov 2009 20:11:39 GMT

Got my pathology report today heres where things stand.

Heres the background:
--Felt lump last week 11/11
--Right I/O last friday 11/13
--CT looked good.
--Labs looked good:
AFP:2.1 --normal range: 0.0-8.3
beta-hCG:<2 - -normal range: 0-9
LDH:174 --normal range: 100-250

--Pathology reviewed today 11/19.
Found 3cm mass 100% pure seminoma. Stage 1, contained to testicle.

So of course this leads to the question...surveillance or some radiation. Im stating to do my homework and insight would be a great help.

Does this stat sound right? Since its 3cm in size I have about a 15% chance of recurrence if I do surveillance only whereas if I do radiation that drops to 1%? I know its hard to back something like that up but in general what do you think?

Thanks

Sean

Is This Normal

Marc311978 — Thu, 19 Nov 2009 19:20:06 GMT

I just had my second orchiectomy yesterday. Yet today when I analyze my scrotum there appears to be some type of soft large mass in it that feels like it could be a testicle. The nurse told me it was removed and the doctor told my mom it was removed even though when they did a primary biopsy of one of the four hypoechoic lesions it was not cancerous.

The doctor told my mom if they did a biopsy for the other three I would have no testicle left. He also said that my testicle was very small ans was not working right so he decided to remove it and have the other lesions analyzed by pathology.

I never actually talked to the doctor post surgery. Could this mass be inflamation or fatty tissue?

Did any of you other 2x experience the same thing?

Tumor Marker Results - Why So Long?

wtcf90 — Thu, 19 Nov 2009 17:28:59 GMT

I've been in remission now for approx. 7 months. This morning I had my tumor markers taken as per monthly, but for the first time no AFP result back :-(

I know I'll have a sleepless night worrying about the result, but for the last 7 months its nearly always been a same day result - normally giving blood in morning and given result in the evening, but not this time.

Does anyone know how long it takes to perform AFP test? My HCG and LDH results are in and both continue to be absolutely fine

I'm being watched over by Western General Hospital in Edinburgh, UK

Hello again !! I'm Back !!!!

oneballer — Thu, 19 Nov 2009 14:42:04 GMT

Hello everyone ,

Sorry I have not posted in like YEARS but I went on a journey after I healed. I pack my bags and took off to see the world. Didn't get very far Australia AKA THE BROWN . Trekked around the outback and work in a Kangaroo rescue center for a while . Had to go look at life on the otherside. I felt like my life had been giving back to me so I wanted to give back. As many of you my know after a RPLND somthings don't work right. I noticed
I was feeling weak , tired gaining weight and libido was gone like a fart in the wind. So I came home had some test done only to find out that my testosterone levels were no where to be found !! Great what next I thought.

So my question is does ANDROL GEL work ? what if any side affects have you had and do you notice a change in yourself.

Hope everyone is well

Cheers

Pat

Multiple Questions

robertj — Thu, 19 Nov 2009 03:49:15 GMT

Hello all,

Thought i'd share some random thoughts of what's been on my mind lately:

Any and all thoughts/experiences about any of the following topics is greatly appreciated!

Since surgery (july 31, bi-lateral)

1) woke up about 6 weeks post surgery with symptoms resembling arthritis in hands and plantar fasciitis in feet. some days are better than others, but neither has gone away. No history of this ever before. May be totally unrelated to cancer/surgery/tesosteron, but just wanted to know if anyone else had this and if your symptoms persisted or subsided.

2) had weird pain near the surgical scars (not the normal pain, but almost like a muscular pull, when i moved certain ways) , in an area where a hernia would be. Doctor ordered ultrasound, but no evidence of hernia. another doctors suggested in might be post surgical adhesions. Again, any experience with adhesions/scar tissue???
Any advice/thoughts about what to do if it is an adhesion?

3) more cosmetic, but both surgical scars are VERY visible, near 4 months post surgery. i thought the skin discoloration would have faded more, and/or they would be covered by pubic hair by now, but no such luck. Just curious if if becomes less obvious with time or not. I tried some scar cream and vitamin e. etc. but didn't seem to make a difference.

4) Gaining weight--10+ pounds since tesosterone shots started in late september. Of course some is muscle as i'm active again, which isn't bad, but wondering if people found the weight gain taper off after time.

Ok, that's all i can think of now, doing well otherwise!

Knee Joint Problems? because of elevated Testosterone?

rosc — Thu, 19 Nov 2009 01:11:03 GMT

Hi Guys,

Have not been around for a while. Hope all of you 2Xers are well. I wanted to ask a question. Recently I was seen by an Orthopedic for severe swelling of my knee. He thinks it's something called Psuedo-Gout or the formation of Calcium crystals in the joints. I am currently injecting .5 cypionate per week and I feel good.I have been injecting for over a year now, However, I did come across this condition called Acromegaly. I was wondering if any of you guys who are injecting have had to deal with anything like this.

Acromegaly is a chronic metabolic disorder in which there is too much growth hormone and the body tissues gradually enlarge.

Thanks

Mark

Ringing in ears

MFB — Wed, 18 Nov 2009 23:05:56 GMT

I finished chemo 1 year ago (4XBEP), and ever since I have had this high pitch ringing in my ears. I also still have neuropathy in my feet and hands. Has anybody else experienced the same thing? How long did it last? Thanks.

Travel Insurance

Andycoles — Wed, 18 Nov 2009 23:02:59 GMT

Just a quick note to let you know my good news.

I booked a holiday to get over my original biopsy operation back in July, as my left orchidectomy was not originally scheduled until October. Due to NHS guidelines, my operation was moved forward to August, which meant that I had to cancel my holiday.

I put in a claim on my holday insurance, which was rejected as I has known about the surgery when booking the holiday, but I decided to lodge an appeal as the surgery was moved forward after booking the holiday. I also included a letter from the surgeon, stating why they had changed the date, and also stating that I was originally told that going on holiday would be beneficial in my healing process from the biopsy operation.

Anyway, long story short, they got back to me today, stating that they would refund the money as a "good will gesture"

Just goes to prove that, if you try hard enough, these people can pay out eventually.:D:D:D

Delayed-onset tinnitus after BEP?

sfdad — Wed, 18 Nov 2009 20:11:43 GMT

I completed my third BEP cycle on October 20. During some of the cycles I would get tinnitus starting a couple days after the cisplatin, and it would always end after a day or two. I took fosfomycin concurrently with the cisplatin to help protect against ear damage. So far, a fairly normal experience. However, just last Thursday (November 12, over a month after the last cisplatin infusion) I woke up with ear ringing that's remained since then. The sound and amplitude are very similar to what I experienced during BEP -- extremely high-pitched whine that sounds a lot like the whine that old TVs used to make, back when I was young enough to hear them. Both ears seem to be equally affected.

A few days before the ear ringing, I got what felt like an inner-ear infection: an ache when I yawned or tried to bite on chewy food. My ears feel a tiny bit stuffy, too. The pain is still there, but it's subsided somewhat.

I've made an appointment with an ear-nose-throat doctor today, but my oncologist is sure the ringing is because of the cisplatin. I'm hoping that it's something temporary, of course -- such as muck in my inner ears that is making my cochlea unhappy, that a quick round of antibiotics will clear up.

Have any of you experienced tinnitus that began well after the end of your chemo?

The Non-Cancerous Thread

SeanTella — Wed, 18 Nov 2009 19:48:50 GMT

There will be no cancer talk in this thread. Just....everything else. :D

Anyone see 2012 yet? My wife and I were thinking about going out to see it. Obviously, I don't expect an Oscar contender, or even a good movie. I'm hoping that the special effects make it a fun movie to watch. I've seen a lot of awful movies this year though. GI Joe and Transformers are on a mission to destroy my childhood I think.

Neutrophil Counts

Redlight — Wed, 18 Nov 2009 18:39:23 GMT

So I am now on day 17 of my first round of BEP and am stuck here at the hospital. I spiked a fever on Saturday night and came in and am glad that I did. They still gave me my bleo on Monday even with my almost non-existent WBC, which I am glad I didn't have to fight with them over. On Sunday, my neutrophil was .02, then .00 on Monday and Tuesday. I started getting the neupogen injections on Monday and my blood work this morning shows it is at .04. The acceptable range shows 1.7 - 7.30. The doctor hasn't come in to see me yet today so I am trying to gauge how many more days I have to be here. Hopefully I don't have to hit the 1.7 mark since I start round two next Monday. Seems like I cannot get a break from this place. I will also be making sure that I get the neupogen shots to take at home with these next two rounds.

Several articles on TC form British Journal of Urology International

Vinny — Wed, 18 Nov 2009 04:55:08 GMT

Hat tip to Doug Bank at the TCRC. As Doug says, these are scholarly articles, so without a medical background they may be difficult to digest.

http://www3.interscience.wiley.com/j...22649052/issue

Also there is a podcast of an interview done with Dr Sophie Fossa regarding her article on short and long term morbidity (fancy word for health problems) after treatment for testicular cancer.

http://www.bjui.org//ContentFullItem...&SectionType=1

BTW, Dr Fossa is definitely a testicular cancer expert and has always been on the TCRC's experts list. She is Norwegian, though, so be prepared for her accent.

Hard Testicle after surgery

matt25 — Tue, 17 Nov 2009 23:55:15 GMT

Hi, I'm 18 years old and I recently underwent surgery for an undecended testicle that somehow was not found my my gp (partially my fault for not saying anything but...) anyway, i also underwent surgery for a bilateral varicocele at the same time. My right testicle which was undecended is still riding high which my urologist says is normal and I will need to pull it down. That right testicle is hard, I don't know if that is just swelling, but I'm seeing my urologist on thurs. to be sure. I was just wondering if I'm still at a high risk for developing TC even after having surgery to bring a testicle down. And I'm also worried that since my testicle is hard, is it possible that some kind of tumor has developed in the past couple weeks, or would the doctor have seen something when he was doing the surgery? Sorry to be asking so many questions just a bit paranoid I guess.

Thanks
Matt

Oestrogen invasion

phillymorris — Tue, 17 Nov 2009 14:32:36 GMT

The more we see this kind of thing the more i am sure that as men we are being over run by Oestrogen in food, water, plastics.
The more we start to shout about it as a possible cause of our TC the more the press, lawyers, political people will want to make friends with us. the lawyer is more powerful than the president.

this article may not be aimed at us, but i am sure there is a link between us and IT some were..

your views? I thank-a-you

http://news.aol.co.uk/plastic-chemic...52456808445690

any tips?

Elliott — Tue, 17 Nov 2009 04:54:58 GMT

So, my husband goes for his last bleo booster on the 20th. We then have two weeks until they do the restaging. Any tips other than staying busy on how to keep the mind from wondering over to the darkside? Its amazing the amount of anxiety I am actually trying to deal with. I never thought I was a particulary anxious person until this.

Made the leap

timscott — Tue, 17 Nov 2009 00:25:08 GMT

well I finally told my parents and scheduled a doctors appointment to have my right testicle checked out. It has been swollen for about 4 years now, and I never really thought much about it until now. Recently, it feels like it has gotten bigger, thus prompting me to call my physician.

But I was curious if somebody had any ideas of what it could be. Obviously, the only official way to know is by talking to my doctor... which, again I am doing this wednesday... But just to put my mind at ease. because, of course I am thinking of every bad possible outcome, and just wanted to talk to the community.

But it has progressively gotten bigger over the past four years at a constant rate. And occasionally I have a very dull ache in my right testicle... but not very often. Other than that no other symptoms or anything and I am a very healthy 23 year old. I have been very active over the past four years with sports and weight training. Also, I had a bilateral hernia when I was born (which I know can lead to other illnesses such as a reoccurring hernia or hydrocile) . But if anybody has any idea what this could be please let me know.

Or any advice on how to deal with the possibility of TC, because my mind is going a million miles an hour... thank you

Rplnd

Gators316 — Mon, 16 Nov 2009 23:56:12 GMT

Hi guys - first post here.

I was diagnosed about a week ago. The pathology report showed that I had 2 nonseminomatous (sp?) tumors on the left side. 1 100% embroynal carcinoma and the other 100% teratoma. The urologist gave me 3 options: surveillance; RPLND; and chemo.

Doc said that there was no vessel invasion but that there was a 30-35% chance of the cancer relapsing, but also said that the teratoma was nasty little thing that has the potential to show up in random areas and would require surgery as it is impervious to chemo.

I am leaning towards a RPLND because I know if the cancer does come back then I would be doing both surgery AND chemo. Plus the RPLND gives me some peace of mind as to whether it has spread or not; besides the annual test, everything is over. Additionally, the chances of infertility I think are about 10% with the RPLND as opposed to the CT-SCANS which I hear will most likely make you infertal.

Edit: Surveillance would require 4 CT Scans per year.

For those of you who have gone through a RPLND, how was the recovery? What do you guys think about my situation? Let loose - thanks!

Just Finished 1st Post RPLND CT Scan

Jarrod — Mon, 16 Nov 2009 21:35:59 GMT

Hello All,

I just completed my first CT Scan after going through the dreaded RPLND procedure. My cancer was a stage III and I am considered a poor risk patient. As of now my all of my counts are normal but the CT Scan has revealed two lymphnodes that are larger than normal. The doctors removed the effected lymphnodes (so Im thinking) from my abdomen and my chest and the two lymphnodes found have the sizes of 4cm and 3cm. I'm told that it could be either scar tissue or it could be the news I was hoping to never hear again. I am wondering if anyone has had this experience before and how it turned out. Any response would be MUCH appreciated.

May God Bless All of You,

Does anyone else use UniBall brand pens now?

troydmb17 — Mon, 16 Nov 2009 20:05:40 GMT

I do, and I buy them for everyone as small gifts.....just so they'll be reminded of me:)

epididymitis while on antibiotics?

steph — Mon, 16 Nov 2009 16:20:38 GMT

in addition to original post, he now feels throbbing in left testicle. Is this a common symptom (to feel throbbing on opposite side of where epididymitis is)? my 22yr old son has right testicular lump. Had ultrasound 4+wks ago with results showing "atypical" not solid, not cystic. Dr. put him on 2 rounds of Cipro. Friday he experienced intense testicular (and abdominal) pain. Went to ER to rule out Test.torsion. Dr. said he has epididymitis. My Question is if he's been on an antibiotic for past 4 weeks, why would there be a flare-up of an infection? Is this normal? (btw- original lump is smaller, but there is still a small hard lump present).

Coping during the waiting game

starjayroman — Mon, 16 Nov 2009 16:14:29 GMT

We are still waiting for the doctors to call back from last week on when he will be starting treatment and it is really stressing the three of us(my son, my husband and myself) out. The oncologist wanted to start High Dose Chemo today. The urologist talked her into doing a Petscan and if it was localized to one spot doing surgery instead. The Petscan revealed that there are three places possible for having cancer. Two of them in the chest, so I think surgery is out.

I still worry about the PETscan, if it was of any use to do one. Since, it states
1. Hypermatbolic right axillary lymph nodes, suspicious for metastatic disease. Ultrasound would help with further evaluation.
2. Hypermetabolic upper mediastinal lymph nodes that could be reactive inflammatory disease or active metastases.
3. Hypermetabolic retrocrural adenopathy comaptible with active malignancy. This may extend into the retoperitoneum at this level.

I know both doctors have the fax of this eval, that we got last Wednesday.The Brainscan was done on Thursday and they should have that by today.
I wish they would call and let us know what they intend to do. Time is of the essence and it is soo frustrating. I hope that he doesn't have it in his brain. I am worried because Fed has said that the MD oncologist should be in charge not a urologist, so it is really, really frustrating not knowing if we or they are doing the right thing. Not knowing who is actually in charge. I will be calling the oncologist today, if we don't hear from them by 1:00 pm. I imagine she will want to act fast once she has all the reports, at least I hope so. I think they both will want to act fast.

Pregnant before TCancer diagnosis

K-J — Mon, 16 Nov 2009 12:09:26 GMT

Hi All,

First of all my thanks for this great forum, it has been very useful. I unfortunately also got TC, had my operation and am currently undergoing radio-therapy. All was discovered in an early stage. I had a 'seminom' phase I, and one testicle was removed, and there were no signs of spread throughout my system. Currently I am undergoing one of the last radio-therapy treatments, which should all be finished in two days time. Sofar so good...

But my wife became pregnant about 2 months before I got diagnosed with TC cancer. All the doctors had not mentioned anything specific about this and only congratulated us that we may soon be adding another baby to our family, We already have a son of 3 years old. :) The doctor today however said we should "pray that nothing happens to the new baby...", I couldn't be present at this meeting with the doctor because I went for another radio-therapy session. My wife who was there alone is very upset and afraid, the last thing we need after an already difficult time.

Does anybody know what the consequences are of becoming pregnant a few months prior to testicular cancer diagnosis? A lot of information is available about fertility, but possible risks for the pregnancy while the man has TC...I can't find anything..