Hi to all that might be in the same situation... it can sometimes be a struggle to get the treatment that you feel is "right" for your situation.
Written by "mum", who became the carer of a 29 year old with testicular cancer.
The headline says it all: tumour (that was marker positive) detected in left testicle in 2022. It was a non-seminoma (composed of 4 different tumour types). Orchiectomy and 3 cycles BEP chemotherapy afterwards. Since also a small lesion (suspected metastasis) was found in the lung, at the time there was a recommendation to remove this. We refused because a major thoracic surgery in an asthma patient didn't seem to be a safe choice in Covid-infested hospitals, particularly when the small size was more or less at the threshold for surgical intervention. We opted for an initial monitoring approach. The suspected lesion did shrink post chemo and has remained under threshold ever since. Hopefully this will not change!
Monitoring (bloods, chest xrays etc.) in regular intervals was the follow-up.
hCG marker started to rise end of 2023, first slowly then rapidly, another ultrasound examination showed suspicious areas in the remaining testicle. Just 3 weeks later a repeat ultrasound showed rapid growth.
Therefore urgent surgical intervention was needed. NHS insisted that only another orchiectomy was the correct approach. However, we knew that under certain conditions testis-sparing surgery could be an option for some (sadly not all) patients. If a patient is a suitable candidate, this type of surgery offers a glimmer of hope in relation to reducing the psychologial impact (losing one testicle is ok, but both isn't really "fun") and also another glimmer of hope that the testosterone production of the remaining testicular tissue recovers over time so that relatively normal function without the need for testosterone replacement therapy can be established. For us this was worth exploring.
I've spent nights on research and a very useful resource was this:
The 2024 Testicular Cancer Guidelines (European Association of Urology) that can be downloaded from here: https://uroweb.org/guidelines/testicular-cancer
This is a very comprehensive read, I highly recommend it. Provides a lot of background information to all aspects of testicular cancer from diagnosis over treatments, side effects, risks etc. to follow-up.
We reached out to one of the panel members of the association and sent them all medical files, reports, imaging etc. for evaluation whether my son could be a suitable candidate.
Luckily he was. Since the NHS still refused to even consider any testis-sparing surgery approach, surgery (in Cologne in Germany) was scheduled to take place within a week.
Three tumours (this time seminoma) were removed and healthy tissue was spared. To make sure that germ cell neoplasia “in situ” (GCNIS) could not develop into new tumours in the future, 10 sessions radiotherapy of the testicle followed the operation. This local radiation was well tolerated with no side effects experienced whatsoever. (It can have late effects such as contributing towards prostate cancer risk decades later though, but we were fully informed about this risk.)
So far... knock on wood... we are back to monitoring only. Testosterone levels do seem to recover slowly. They were practically absent shortly after surgery, but are now within the normal range albeit at the lower end. Hopefully they keep on recovering so that TRT won't be needed at all, fingers crossed.
I am writing this mainly to show that you should never despair... sometimes there might be options that could make this whole awful cancer journey a little bit easier. But if you don't explore... or don't ask for a second (or third) opinion which is always worth doing... you would never know.
It is not set in stone that all will work out in the long term as anticipated or hoped, but at least you thoroughly checked and tried.
Hello Patsy1994
I am Brian one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. Having read through it a couple of times though, it isn't asking for an answer - it's full of useful information. I have a different cancer but I find "stuff" like your post very informative and interesting.
By me replying your post will be "Bumped Up" to the top of the group and by me doing that it should again come to the attention of other group members. Thank you for posting.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
