Post-Orchiectomy and further treatment - what should I expect?

My husband had a very similar diagnosis back in August—mixed germ cell, stage 1! 

He recovered quite quickly from surgery, and was back to his office job within a few days, back to walking the dogs with me maybe a week or 2 after that. No issues with infections or anything like that, thank goodness! 

We're currently waiting for his blood markers to fall to normal (he had an AFP of over 2000 and that has a half-life of around a week, so it's taken a while!) and then he's due to start 1 round of BEP chemo at the end of the month. That'll be 2 nights in hospital on a drip, home, and then back to the hospital for a quick injection once a week for 2 weeks after. This is just to reduce the chance of it returning—I think it brings it from a possible 40/50% chance down to low single figures.

Unfortunately, as he hasn't started, I can't tell you how it went, but our cancer nurse has told us that it's pretty manageable and to just take 2 weeks on rest before thinking about returning to work. He could take as much as 6-8 weeks if he feels the need apparently, but for the most part, you just feel a bit tired. 

Hope you get some answers soon! The waiting is the worst, but as our urology nurse told us when she told us my husband's staging—the hard bit's over! 

Thanks for your reply Lavender I’m glad to know your husbands recovery post surgery was good. So was mine and Im very chuffed about it. In my diagnosis they found nothing on the CT or blood markers but my nurse told me the tumour was pt2, was this similar for you? also do they give you a % breakdown of how mixed it is? Anyway Im really hoping they give me the option of 1x BEP and Im hoping it has minimal side effects as I plan to get married to my fiance next year. What advice did your urology nurse give regarding 1x BEP and did they give a rough indication of when yoire back on your feet?

Yes, my husband's CT scan was clear—just the blood markers were raised. He is pt2 as well, as there was some blood vessel invasion. Apparently it's nothing major to worry about, but it just increases the risk of recurrence a bit (thus the offer of chemo!). I can't remember the exact breakdown—the nurse showed us the breakdown but didn't send us home with the info—but I do remember it had at least 3 different types of germ cell.

Sounds like a very similar story to you, and with your normal blood markers, I'd be surprised if they offered any more than 1 round of chemo just to prevent recurrence :) 

The cancer nurse had told my husband to take at least 2 weeks (he can work from home but she insisted that he just focus on resting up) and then after that, see how he felt. She said one round was pretty manageable, and he'd likely just feel tired/run down for a few weeks. 6-8 week recovery time, roughly. We have a pre-chemo meeting on 27th of this month so we'll probably find out more then!

Congrats on getting married next year too!!! It's likely this will all be a distant memory by that happy day :)

Yes, our stories are very similar! I've been told that I will be offered one round of chemo to prevent any relapse, fingers crossed and praying to god that does the trick!

I hope you don't mind me prying too much but did they mention anything regarding the side effects of 1x BEP chemo on fertility or does it make you lose your hair etc? any mention of any side effects at all?

Do you plan to have children or do you have children? For me that's quite a bit worry at the moment

Pry away :) happy to chat with someone else on this journey (as much as I'd really rather you weren't on it at all!!)

We were given a booklet about BEP chemo in general and it went through the various side effects you can experience. Mostly tiredness, nausea, but mentioned other things like metallic taste in mouth, hair loss etc. As for what we've been told about 1 round, the cancer nurse really only mentioned the tiredness and nausea. I'm hoping he won't lose his hair, as from blogs/experiences I've read, that doesn't seem to become a major issue until round 2 and 3—hopefully just some hair on the pillow/coming out with a brush etc.

On kids—we don't have any and really would like to have some in the future! We had actually been talking about trying this year before this all kicked off, so that's pushed the timeline out a little bit, ha. 

From our initial chats with doctors, they said it could be 6 months up to 2 years before fertility came back. They said the majority of the time fertility comes back without issues, and I have actually gathered up quite a few stories of friends and family members who have gone through 3 cycles of BEP (some 30 years ago!) and have all had children since. With all that, I feel quite positive about the fertility side of things, and it's nice to know we have banked samples too, just in case. Have you visited fertility clinic yet? Have you started having kids at all?

I'm glad to know that you have such a positive outlook on this and talking to you makes me have a similar outlook! I really do hope that 1 round BEP is kind to me and your husband and that we recover from it fairly quickly. I have heard some people saying that your hair may thin or you may even completely lose it and im not looking forward to that (partly because my head is the shape of an egg haha) but even if I do it's a small price to pay for good health. I do hope they grow in time for my wedding as that is one of the things my fiance loves about me haha.

I haven't got any children and have banked one sample pre-orchiectomy which has slightly less motility (3% lower than lower range cutoff) but they said they've frozen it so I assume it may be of some use in the future. Do you reckon I should bank more before chemo begins? and if so how did you go about it? I'm glad to hear so many stories of men who've had TC and gone to have healthy children, I would so love to in the future. I don't think ill try in the next couple of years but hopefully by the time we try, maybe its all ok then :) 

P.S bit of a side note but did the tumour affect the semen quality for your partner - Im curious whether a post-orchiectomy sample might be better? (dont worry you dont have to answer this on here - you can always private message me :)

Agreed—not pleasant but an okay trade off for many more years of good health!! And hair grows back :)

We weren't offered another chance to bank more sperm, so the pre-surgery samples are all we have. I don't know anything too specific about the sample really, but we were told there was good mobility etc so we weren't asked to come back. Apparently if it had been poor they would have offered us another try—maybe check with oncology when you're chatting with them what they'd recommend? They may be happy enough with the current sample!

I don't really know how much cancer has affected the quality of the sample really, because we've never looked at his fertility beforehand. We were told that being unwell can impact fertility, so it might stand to reason that it could be better post-surgery, if you're all healed up? Best to check with your cancer nurse anyway!