Testicular Cancer Relapse

Hi JJ,

Sorry to hear the suspicion that its back, and rare for it to be in the other testicle as relapse more commonly is caused by escaped cancer cells lodging in lymph nodes.

I'm on testosterone replacement for life now, and its no great chore. If they do plan to remove the testicle then he'll need to get on hormone replacements pretty soon else he'll turn into a grumpy, angry, irritable person. Make sure you push for that.

You don't say he's had CT scans during his surveillance, but I'm guessing he has its the norm and they're clear for the abdomen which is good news. So far he's dodged chemo, and I would think he might be offered adjuvant chemo  this time for a belt-and-braces approach. As its pure seminoma then it can be carboplatin, which is a little milder. The biopsy of the testicle will be available before you have to make that decision.

Sorry I don't have much experience or advice to give, just wanted to say welcome and glad that you found us,

Greg

Hi Greg,

Thanks so much for your reply! Really helpful :-) 

Yes, we've been told it's rare to get TC twice, but that it does happen - the Oncologist said it's treated like a primary cancer again as it isn't possible to spread between both. We were just shocked at how quickly this has happened, as most other cases I have seen on here have had years between the two cases. 

He's had lots of ultrasounds but with CT's, he had one straight after the original surgery in Dec & has just had another one last week, which we get the results of on Monday.  His tumour markers are all fine, but always have been - do you know if a seminoma had spread to lymph nods, would this show in the bloods? 

Glad to hear TRT isn't too bad! My boyfriend had a couple of questions about it, would be great to hear your reply to these, if possible;

1. Have you had any effects regarding strength / muscle mass? (He goes to the gym daily & is concerned this may have an effect) 

2. Do you have the gel form/ injections or both? 

The surgeon said he would start the TRT ahead of surgery (scheduled for next Fri) which feels me with confidence and I'm sure he will feel lots better from being on it, as his levels are on the low side currently. 

Thanks so much again for the info provided so far! These forums are great! 

Thanks,

JJ 

Hi JJ,

Seminoma is quite shy when it comes to making its presence known through tumour markers in the blood, even if it has spread the markers are only raised perhaps 10% of the time.

1. The beneficial side-effect of hormone replacement is that whilst all his mates will watch their testosterone decrease into an old age of slippers, cardigans and werthers originals, his will remain at that of a 30yr old. You'd best find him a hobby to keep him busy. The testosterone isn't that strong and the dosage is such that its what he would have been at normally (maybe a little more if his dangly bits have been underperforming). So, he should see lower fat, and leaner muscle as a result, but its not going to give a 6-pack just sitting on the sofa. Two years after my treatment I set a lifetime personal best in the gym (indoor rowing) at the age of 44, and I was no slouch before it all. He should still enjoy and do well in the gym.

2. I've tried both, and now am on gel. The injections are less hassle (one every 10 weeks, sore cheek for half a day), as opposed to 3 mins in the morning applying gel and waiting for it to dry. Its easier to get the dosage right on gels as you adjust on almost daily basis to get the levels right, whereas injections are more difficult - I peaked at the beginning, and sagged at tne end, both of which made me feel rough.

Greg

How is he going now? Do you have news

Yes I’d also like to know, I had classic seminoma last April removed right testicle in June, no spread to lymph’s and I’ve just had my 6 month ct and bloods and it’s all good. I was curious how you knew about the other areas of concern as I don’t think I have any ultrasounds on my surveillance and I feel like my remaining ball feels a bit harder than normal, there is no lumps and I could just be being paranoid. Anyway hope all is well with you guys. 

James

They will not carry out an ultrasound unles they feel necessary. They will rely on your CT scans and chest x rays to check for spread or new growth. Testicle's do go hard and soft during the day as this is normal just like someday's it will feel bigger than the day before. 

Paranoia does play a big part in all this but of you ever feel something is wrong then ask for an ultra sound as they will complete one. 

Hi mate thanks for your reply. I think you’re right it does feel normal again today. The paranoia is awful after having it once. Sometimes I avoided even checking. Just so much to process really!! Hope your well

I had the second removed recently after 6 years of helthy life. Had the same symptoms. Push the doctors to take it out !

Thanks for the reply, I’d rather not have it took out unless it needed it. It’s really rare for it to come back in the other testicle. So did they actually find a secondary cancer in your other ball after 6 years mate??

Yes. First they saw few small spots which did grew to 6mm in 5 months. If they would take it out asap I could avoid chemo  It is not rare hat it comes to other testicle.