New to Forum - bilateral orchiectomy

[cotoram]

Hi All,

This is a pretty cool forum I stumbled on. Here is my story: I had swelling in my testical for quite a few months, but blew it off as soreness from excercise, etc. Finally, since I had not had a physical exam in 4 yrs, I went to the Dr. for a routine physical exam (I am pretty healthy and inshape). I mentioned, oh by the way...... he felt around and didn't think much but recommended an ultrasound. Two days later (Dec. 14, 2005) I had an ultrasound and found out I had tumors. The same day I did the CT Scan and more blood tests and then quickly to a urologist. I found out I had tumors in my left and right (2 in my right and one in my left).
I was told that the only treatment for these tumors is to have my testicle removed. And that due to me having it in both they were going to remove my right and try to save a bit of the left for testosterone production.
I had surgery Dec. 19, 2005 and woke up to find out they had taken the right and 1/3 of the left.
They confirmed that the tumor was a seminoma and the CT scans had also shown that there was no sign in the lymph nodes. The doctor was pleased with the results and thought we caught things just in time.
I will go back to see the urologist in about a week and then will most likely have radiation treatment for a couple of weeks (urologist is saying around 1800 rads?).
I am concerned about my left 2/3 testicle left and its future cancer risk, etc. I guess it is just one step at a time and also very grateful that seminoma is highly responsive to radiation.
I call this experience "smelling salts" for life. I am a Christian and certainly looking forward to what God is showing me and teaching me through this experience.
If any of you need insurance advice, let me know as I do that for a living. Thanks all for your time on here and thoughtful comments and threads which I have found useful.

[Mom]

I am sure you fall into the single percentage group to be diagnosed with TC in both testicles at the same time! You are taking it in stride and I assume that is due to your faith. Even though they have saved two thirds of one of your testicles, you should be tested for your testosterone levels. Having lived with someone for 30 years on TRT, it is very important to your mental well-being and those around you that you stay on an emotional even keel. BTW, welcome to the forum, thanks for posting, its important to share. Dianne

[huckchef]

sounds like my story exactly! welcome to the club. sorry about the initiation fee!!! i had bi-lateral as well. i tried to post my story but couldn't figure it out but i think you can access my profile and find it under my first post "new to forum..... heres my story" in the "ballroom". i can go on about it all and it sounds like you took the same route i took. i ended up having the remaining testical removed after a few months because it wasn't supplying me with enough testosterone or sperm and it was staged pre-cancer after the biopsy. luckily i was able to bank before my I/O. about the only problem i'm addressing is testosterone replacement. i'm doing bi-weekly injections and will see an endocrinogist on the 30th to hopefully get it all straightened out. you may feel fatigued, moody, lack of desire to do things, forget things, weight gain, just to name a few. did you have a testosterone level checked before the I/O? may want to see and endo in the future? radiation wasnt that bad. took me longer to park and walk in than the actual treatment. i had 18 rounds but i dont remember what range. i had some nausea and like another patient(prostate cancer) and i frequently spoke about being able to "**** through a sheet". excuse my frankness but it was a little humor to get us started in the mornings. during treatment my sense of smell increased alot. strong odors like perfume, household cleaners, strong air freshners, etc...would make me vomite. but that was about all i had. i can go on and on but if you have anything specific , i'll be glad to help. this is really a wonderful site to help and many knowledgable and kind people, best of luck and god bless, brian.

[cotoram]

Thanks

Thanks for the responses. I did have my testosterone levels measured pre surgery, but don't know the results yet. I have absolutely felt less energy and have found that I sometimes forget things. It makes me curious about my testosterone dropping maybe.

I am not too worried about the sperm bank thing as I have three wonderful children and was contemplating a vasectomy anyway. Probably will not need one now.

Good to hear the radiation is not that bad, I hate throwing up, so I may want to load up on anti naseau meds if they have it.

I am meeting with my urologist for the first time after surgery on next week. I hope to get a lot of this information as well, and try to get my arms around keeping the partial or not. It looks like it is a bit sketchy to keep it....

Thanks again and I look forward to checking in regularly.

[Fish]

Welcome:

I've also had both removed, only about 15 years apart. Hopefully the doctor will get you on some hormone replacement if you need it. Don't be afraid to keep asking if you don't feel "normal". If it were me, and this is solely my opinion as to what I would do.... I would not keep the remainder of the left testicle. But you will have to decide what is best for you. When I found the second tumor, I couldn't get the thing out quickly enough.

Good luck with everything and make sure they routinely check your testosterone levels.

Jim

[cotoram]

Looks like second one has to come out

Ok,
I guess I was wishful thinking with my partial orchiectomy on my left (had total removal of right 12/19/05). Looks like they are not sure they got it all and I am going to have to take out the left one. Then the Drs. are recommending a single dose of carboplatenen (sp?).

I am going to get a second opinion on the removal of the left as the hormone stuff sounds like a bit of a drag. I am going to try and see some specialist at USC medical center.

I just found out today that I have to get the second one out, but suspected it.... perhaps there is some still hope with low risk of it staying? I want to do some more research.

Any body have any additional thoughts?

Thanks,

[Jens]

Hi cotoram.

Sorry that you will be loosing the rest of lefty.
You will find good advice on how to live with testosterone replacement therapy in this forum though.
Seminomas are traditionally treated with radiation, but Carboplatin (1 or 2 doses) is an alternative to radiotherapy, as an adjuvant treatment. There are very few and only mild - if any - sideeffects and the results that I have heard of so far, indicates that it is worth considering. Nothing is for free, carboplatin is chemo and therefore it should not be taken lightly. But the same goes for radiation therapy.
It's easier and quicker to get a shot of carboplatin...

You will find a lot of usefull info here.

A recent paper on the subject that supports single-dose carboplatin. You will easily find other publications that support 2 doses, but in any case the rationale is that Carboplatin has less longterm sideeffects than radiation therapy.

Best wishes
Jens

[cotoram]

Thanks

Thanks,
I guess having both gone is a heck of a lot better than having the cancer threat over my head.

With both out, I am sure that the risk of future cancer will be much less than just one. I am not sure yet about the carboplatinin. I did some reading in the forum on testosterone replacement therapy and it does not look like quite the slam dunk I was thinking it would be.

This forum is a great resource,

[Havok]

Well i too have had both removed, they were removed about 1 year apart (one semi, one non semi) Kind of sux to in the 3% catagory for that one!

If you do have both removed you will have hormone issues, there is just no way around that. My dr. waited about 3 weeks after my second one was removed to start my HRT. Those 3 weeks were brutal. The best i could explaine it is like a women going through menopause. I would be on edge and would rage at every little thing then 5 mins later be crying at a phone comercial. The good news is that there are alot of options out there right now for hormone replacement. One of the best is a product called Androgel. It looks like that no water hand sanitizer and you rub it on your arms, shoulders or stomach. You use it once a day and will keep your hormones at a balanced level, I think its better then shots as you dont get the highs and lows that come with shots. It keeps everything at a constant. Along with androgel there is one that is similar called Testim. I prefered the androgel as it dryed faster. I started at 10g of the andro gel and it was good but i seemed to be a bit edgy. My hormone levels were ok in the blood tests i just didnt feel right, I switched it to 7.5g and every thing is good now. I have been using it for 3 years now and could not dream about what it would be like with out it.

Here is a link to the TCRC page for us two timers. This has alot of info on hormone replacement and things you should make yourself aware of.

http://tcrc.acor.org/tctwo.html

I hope this helps.


Jeff

[cotoram]

Thanks

Cool, that helps me with the thought of HRT.

[cotoram]

Update surgery yesterday!

I had bilateral seminoma with the first coming out in December 2005. I had a total removal on the right and a partial on the left at that time, but the pathology reports had some doubt about getting it all.

My urologist thought that if there were microscopic traces this could be stamped out with chemotherapy. However, I visited an oncologist and he indicated that if there is residual cancer in the testicle the chemothereapy would not get in there to reach the cancer cells. And of course if you radiate the testical, it will kill it.

My case was presented to the Tumor Board at Mission Hospital here in Orange County, CA and the consensus was that the second testicle on which a partial was attempted also had to come out. I suspected this after reading Huckchef's story (you are about 6 months ahead of me for similar circumstances).

Knowing the HRT was in the cards with a removal of the second, I sought out a second opinion. I went right to the top, I set up an appointment with Dr. Donald Skinner, the chairman of the urology department at USC Medical School and a top national testicular cancer expert. Not only did he review my medical records, but he presented my case in detail at Grand Rounds at USC Medical Center. I felt so fortunate to have so many medical experts weigh in with an opinion on my case. Their recommendations were to go forward with the radical orchiectomy on the remaining testicle, confirm pure seminoma by having my original pathology slides sent to the Norris Cancer Center at USC for a second opinion, and to follow up (if pure seminoma) with radiation. Dr. Skinner does not believe in the efficacy of carboplatinen for adjuvant therapy for seminoma versus radiation.

So, I had surgery yesterday and am sitting here feeling a lot better than the first surgery. My wife got my Rx for Androgel this am (5mg) and I put it on my shoulders.... so I will see, the HRT makes me a bit nervous, but if the gel works that would be so cool, cause it seems fairly simple.

I feel very fortunate about all that has happened and would be more than happy to help anyone have a similar positive experience. I also am a health insurance consultant if anyone would like some advice navigating the healthcare system.

Thanks to all of you for your input and valuable information in this forum!

[huckchef]

glad everything is going smooth for you! i just switched this monday to the androgel. i believe i'm gonna like it alot more than the shots! it so far has been a change and i'm looking forward to getting it regulated. the shots were ok but now i can see the difference between the two.....its a no brainer! as far as your decision to go ahead with the second i/o, i think its a great call. its hard to make the call to take away the last boy but for me i dont miss em at all!!!!! my case as well was presented to the oncology board and they were all in aggriance that we made the right decision! glad to hear things are on the up and up! take care and my thoughts and prayers always, brian.

[cotoram]

Appreciate the thoughts and prayers

Brian,

Thanks for the thoughts and prayers and do keep me posted on the Androgel.

[Mom]

My husband has been without both for 26 years. He has done really well. The most important thing to me was that we could grow old together. With the androgel you won't know the difference, except your wife might start saying that she has a "headache" more often! You've got the right attitude. You will be fine. Dianne