Second testicular cancer

Hi Katja, so sorry to hear about your husbands 2nd diagnosis. I wanted to reach out to you regarding the fertility side of things. My husband was diagnosed in sept/2018 and had to do 2 cycles of chemo (Bep) he's been done with chemo since march/2019, but his sperm count isn't looking good. What kind of chemo did your husband do the first time he had TC and how long did you wait to have your first child? We are struggling with the fertility side and just looking for anyone who has been through a similar experience. [edited by admin]

Thank you, 

Meredith 

Hi there

I had my 2nd removed 2.5 years ago (1st age 46, 2nd age 48). Happily married with 2 gorgeous kids.

A few thoughts/observations:

- I never had a prosthetic (decided that risk of complications outweighed vanity at my age). Not been an issue for me.

- Fertility also not an issue for me

- I had chemo 1st time but not 2nd as there was no spread. Regular observation/scans/bloods.

- I am using testogel as preferred the concept to slow release injections. This was the bit I was most worried about as I didn’t know what impact it wold have on my life. My experience is that it can take some time to get the right levels but you need to persevere. 2019 has been a good year for me and I am in pretty good shape (fitness, mental strength etc). 1st 6-12 months for me were more difficult as i had many days where it felt like I had a bad hangover (without having enjoyed the night before!). As time went on, I had less bad days. Testosterone replacement is quite crude but it’s really important that you get to the right levels.

Hope this helps

I had one removed in1999 -grade 1 seminoma. Prosthetic fitted -purely vanity. This year second removed 2 months ago Leydig Cell -still waiting for full diagnosis. Opted to be balanced so also had prosthetic fitted this time - yes even at 56 years of age vanity played a part. 

I am also getting sorted with TRT - started with Tostran but due to lack of availability locally now on Testogel.  No issues so far. 

Thank you so much. It's really helpful. 

Do you think your issues were to do with low testosterone or just getting levels right?

Did you manage to work through most of this time? I suffer dreadfully with hangovers so that sounds awful to me.

Was your recovery from the second op similar to the first? He's very active and I worry that he'll end up doing too much. We are presuming he'll need chemo but i think it was always framed last time as 'a precaution, no spread, stage 1, best outcome possible'. 

Thanks again though I really needed to hear that it can be fine eventually. 

Thank you Tuglet, 

Glad to hear you have no issues. Would you have preferred Tostran? Is there a big difference?

Any issues ever with prosthetics?

One thing I'm finding tricky is navigating people around us and their level of shock - hearing that cancer has returned is really alarming. But I also don't want to negate it by saying "if you're going to get cancer..." etc.

Thank you so much for responding. 

In the end, I think it was down to getting the levels right and that my dosage was too low to start with. I worked through it all as that is the type of person I am. So much comes down to attitude.

The hangover feeling lasted a couple of days for me (but others may not feel that at all). Headache, a bit run down, nautious.

2nd op recovery very similar to 1st. Only real differences were fear of chemo 1st time round and fear of TRT 2nd time round.

I was really worried that my life would never be the same. I have a very intense job (mental rather than physical) and feared that I wouldn’t be able to continue to operate at that level. I was also worried I wouldn’t have enough energy for my kids. I can honestly say that I am in good shape. I have pushed myself hard and, whilst there were some tough times, I am very, very happy. 

Good luck and do feel free to ask more questions on here (or contact me privately - if that’s possible). I’m not always on the forum checking.

Katja,

my understanding is the 2 gels are the same and the application is the same - so really no difference. I haven’t really noticed any change or symptoms suggesting imbalance of hormones but both my wife and I feel that since the second cancer and being told I need TRT it is likely that I did have some of the low testosterone symptoms after my first Orchiectomy. It was never discussed with me and I was never tested for levels. 

I have never had any issues at all with the prosthetics. It is slightly unusual at first to accidentally knock or squeeze one and get zero pain feedback but you soon adjust. 

Hi, 

We found today that it's seminoma which is a 'late recurrence'. We were all set for having the op tomorrow (full) when suddenly they asked about how we had conceived (not ivf, very easily) and started to talk about partial orchiectomy instead. So we wait until next week now for them to decide.

Is there anyone who's had partial? Any thoughts? There are three lesions 1.8, 1.3 and 0.8 so I feel like this may be slightly false hope? My husband just said "take it out", but they're not rushing for tomorrow...

Many thanks

Hi Katja,

My husband had one fully removed and a partial removed on the other (1/3). We were thankful the doctor was able to successfully do a partial because of us being so young and not having children yet. So to leave the chance that maybe we could eventually one day and also so then my husband would not have to take a testosterone supplement. My husband did say though when he had the surgery that he thought it was more painful than the full orchiectomy. Also, when we went into the surgery we were not 100% sure that the doctor would just be able to do the partial, so we were thrilled that he was able to do it successfully instead of having to take the whole thing. Personal preference I suppose though.

Let me know if you have questions,

Meredith

Thank you Meredith, 

Had your husband banked sperm before that? We are very grateful that is not an issue for us.

Does your husband get along well with no testosterone replacement therapy?

It's a tricky one because my husband is inclined to tell them to just do a full, he says it freaks him out the thought of cutting it. It does sound pretty painful? And of course we don't know even whether they can do it at all. Did your husband have chemo or radiotherapy after that?

Thank you so much for your reply.