Need feedback on full or partial IO and fertility

[telecommatt]

All,

This forum seems truly amazing to me. The information shared is accurate, the responses supportive, and (best of all) it does not perpetuate self-pity. Kudos to the mods and the members!

I need to decide between a full and partial IO and I'd like some feedback on my logic. My situation is somewhat atypical. My initial visit was regarding fertility. Diagnosis was something like 'azoospermia due to adult onset gonadotropic hypogonadism' and it was explained to me that, basically, not enough of the signal to create sperm was reaching my testicles. (Coincidentaly, the chances of having this are the same as having TC, about 1-2%.) My tumor was found during the ultrasound for the fertility workup. It's very small, 4-5mm (yes, mm not cm) and nonpalpable. The two US's were consistent and neither could find anything which would rule out possible cancer, given the description and location inside the testicle. However, all the blood work for tumor markers, etc. came back clean. Because of this, the small size, and the fact that there has been no change- the US's were 3.5 weeks apart, my urologist thinks its most likely benign. My gut feeling says he's right.

Here's where my decision gets complicated. Honestly, whether or not it's cancer has taken a back seat in my mind to the fertility isues. The cure rate for TC is SO MUCH higher than the cure rate for male infertility! My IO is most likely a week from Tuesday. He's going to remove the tumor and do the FSE, and see if he can extract healthy sperm from the removed tissue. I could opt for a partial, which would result in less removed tissue for the sperm extraction, but would leave more of the testicle intact. If the HCG treatment for the infertility takes, I'll have 1.5 testicles producing sperm instead of just one. Or I could have the full IO done and have that much more tissue sent to the sperm lab.

My initial thoughts are that I should opt for the full IO. I'm not confident that it will be easy to find healthy sperm, so the more tissue the lab has, the better. Even if the HCG treatment takes, studies seem to indicate that having the extra half-testicle won't increase my odds of getting us pregnant any more than a few percentages. (I think it was +/-4% that the urologist told me) and once I stop the HCG any sperm production stops, whereas if it's frozen it's there for the duration. I guess I'm thinking that if the HCG didnt work and I didn't give as much tissue as I could for the extraction, I'd regret that more than I'd regret having the HCG work and be missing a testicle. The other thought is that both testicles have reduced mass since the onset of hypogonadism. If much tissue is taken around the tumor, there's not as much to put back in the scrotum as there normally would be. So, walking around with a half-testicle could end up being a really small testicle! Phsycologically, that could be harder for me to deal with than having nothing on that side at all.

So, I'm looking for feedback on my thought process, anything I may not have thought of, or just your thoughts in general. I really appreciate having somewhere to voice these questions and look forward to reading your responses.

As an aside, the whole psych aspect of this has been very interesting to watch. At this point I have to admit that there's a part of my that wants to hear that the tumor was malignant. It wants to justify the feelings of fear and violation I've had. And that part of me would rather cope by saying I was a cancer survivor than say I lost a testicle to a benign tumor. I wouldn't wish cancer on anyone! We have a family history of cancer and it's a horrible experience for anyone involved, but that doesn't stop the odd ways your brain tries to grapple with this whole mess.

Cheers,

Matt

[Luc]

At this point I have to admit that there's a part of my that wants to hear that the tumor was malignant. It wants to justify the feelings of fear and violation I've had. And that part of me would rather cope by saying I was a cancer survivor than say I lost a testicle to a benign tumor

I know exactly how you feel. I was on active surveillance for 2 years before surgery for what turned out to be a benign tumor. I'm grateful not to have cancer. However, Congratulations, you don’t have cancer. Sorry for all the trouble seems physiologically unsatisfying.

My urologist recommended from day one to remove the whole testicle. As he explained, whatever is left will atrophy, shrink to the size of a marble (or smaller) and will become uncomfortable. You cannot have a prosthetic unless you remove the whole thing.

Ask your urologist about testicular atrophy. I’m not sure about fertility, but an atrophied testicle should still produce testosterone. If a prosthetic is important to you, it might make the decision easier.

It's a tough choice. I still second guess my decision but ultimately, it will be the right decision for me. Hope this helps.

[cbvance]

IO Choices.

If I were in your shoes I would go for the full IO, better to be rid of the thing than to chance allowing even the possibility of malignancy any toehold. Sounds like the remaining testicle would become problematic anyway if it becomes atrophied. Also, you can bank sperm prior to the surgery to ensure there is viable sperm later on when you want to have kids.

[telecommatt]

@Luc, thank you for validating my reactions. I'm sorry you had to go through all that, but it's good to hear that my feelings aren't completely out of line. Also, I hadn't though about it atrophying. Good point and something I need to look into.

@cbvance, thank you for being straightforward in your response. Most people I've asked don't want to say Yes or No. I guess they don't want to take responsibility for my decision-- which is silly, since it's my decision. Anyhow, that was very helpful.

Cheers,

Matt

[Scott]

My IO is most likely a week from Tuesday. He's going to remove the tumor and do the FSE...

Hi, Matt, can I assume that if the frozen section examination indicates that it is, in fact, cancer, he'll complete the radical orchiectomy?

[telecommatt]

Scott,

Yes, it anything indicates a malignant tumor, he will remove the entire testicle. I prob should have mentioned that in my original post.

[telecommatt]

Thank you...

From the feedback here and others I've spoken with, I have yet to find anyone who thinks I should go with a partial IO. Can anyone think of a compelling reason that I'm missing that should make me lean toward having the partial IO over having the entire testicle removed? Has anyone had a partial and wished they'd made another decision, or the other way around? Thanks everyone, I really appreciate your thoughts!

[Luc]

The only reasons I can find in favor of a partial are: fertility, testosterone levels, and psychological reasons. You only need one to handle the extra burden of testosterone, so I'm not sure why this is mentioned.

walking around with a half-testicle could end up being a really small testicle! Phsycologically, that could be harder for me to deal with than having nothing on that side at all.

This seems like the deciding factor for a full orchiectomy.

Most people on this forum had cancer and will naturally advocate to remove the whole thing. As one who didn't have cancer, I don't see any benefit of a partial either, especially with your existing fertility issues.

I wont get to speak with my doctor before your surgery, but if your urologist mentions any advantages to a partial, I'd be interested in hearing them.

[cbvance]

one nut bigots?

Most people on this forum had cancer and will naturally advocate to remove the whole thing. .

Are you implying that we might be a single nut bigot??

[telecommatt]

On the other side

Well, the IO was yesterday. What a long day! I choose to have the entire testicle removed. My father's advice was, once I make a decision I feel confident in, to stand by that decision. I figured this would be a good time to take my father's advice.

My doc was inclined to do the partial, assuming it was benign according to the FSE. His estimate was that it would only involve removing about a fifth of the testicle. When I brought up my reasonings for wanting to do the radical instead, he did not try to pursuade me eithe way. He actually brought up his own experiences that validated some of my concerns and said that he felt comfortable with my decision, given my situation. It was reassuring to hear that rather than him simply telling me that, hey, it's your body and your call.

In the end, my two biggest deciding factors were the availability of tissue for the sperm extraction and the physch impact of being left with a half of a half-working testicle-- a constant reminder that I don't function right. I believe that I made the right decision for us because the doc told us yesterday that the sperm they found was not great quality, but was enough to freeze. Had they not had as much tissue available, they may not have been able to extract enough to bank. Maybe tomorrow I'll feel differently, but today, I think I made the right choice.

As far as the procedure and all, I have to say that the University of Minnesota has been great so far. Yesterday, everyone there was competent and very reassuring. They listened and explained everything numerous times. My only complaint (besides having my testicle removed) was that everyone kept asking how I was doing today, which is a really stupid question to ask someone who is about to be relieved of a testicle!

Anyhow, I went into surgery at about 3 and was released around 7. No complications and so far my recovery seems pretty textbook. My worst pain is in the scrotum, not the incision. I feel like I got kicked really hard in the nuts. And I have an entirely new and healthy respect for any woman who has had a C-section, which has got to be magnitudes worse than my tiny incision.

Thank you to everyone who helped me make my decision. I can't tell you enough how helpful it has been to hear from people and to read people's experiences.

Cheers,

Matt

[Luc]

I spoke to my urologist and he mentioned a possible side effect of partial orchiectomy is persistent pain that doesn't get better.

Do you think the tumor had any effect on your fertility? My doctor explained that sometimes a tumor will cause fertility problems in both testicles. Once it is removed, fertility may improve in a few months.

[telecommatt]

Luc,

My doc thought it was a possibility. I was actually surprised that he brought it up before I did. We're going to monitor things for the next six months for so and see if there are any changes. As you know, it turned out to be a sertoli cell tumor, which can secrete hormones, thereby mucking up your endocrine balance. He seemed reasonably optimistic that things would rebalance on their own. I'll follow up here if I find that anything changes.

Cheers,

Matt