Testicular Sex Cord Stromal Tumour

So day 10. Just did a 25 min walk with some fairly steep hills at near normal pace and survived. So much better than just three days ago.

I did make contact with Indiana University which seems to be the centre of expertise for testicular cancer. For sertoli TSCST their strong recommendation was RPLND on the basis there are currently no other known treatments. Maybe in the future immunotherapy might offer some other treatment but with so few malignant cases will it ever get the funding for trials?

Also don't read too much into the limited number of research papers. The sample sizes are so small to be almost statistically insignificant. So just think of your husband as the special one!

I think this leaves me with the mental side of recovery. I am expecting some limited spread to the nodes based on the CT scan but the surgeon thought that it might be no spread. We will see. Irrespective I have regular down moments when i think about the worst case that still could happen even after the operation. RPLND has given me, and will give your husband, the best shot and then it's all about crossing fingers and toes and hoping for the best. I am struggling with this but do talk to my partner (who I asked to marry me whilst I was in the CCU - she said yes!). I would urge your husband to be open with these feelings with you at least. There are no solutions but talking  does really help no matter how difficult and upsetting.

I am now waiting for the results next week and have set that as the date when I start to look forward no matter what the results are. 

I am here if you or your husband wants any other views or to share experiences- which may be helpful to others as well who come across these posts.

I wish you both all the very best - keep strong, stay positive and look after each other. X

Thank you so much for your help! So glad you are getting stronger each day! Good luck with your results, I’m sure everything will be good!                                Thank you again! 

Hi again. Just an update three weeks after the operation.

First the good news - they found no cancer in the nodes and scrotum that was removed. Huge relief. So now I will move on to surveillance starting with 3 monthly scans.

In terms of recovery from the operation - a bit mixed. I'm quite mobile now and just about managed a 5 mile walk last week which was perhaps a little too much. However on the down side I still have pretty bad internal stomach pains (been given some anti reflux meds for that). I also have really painful hips, my scrotum incision remains quite sore and my left and only testicle is a bit swollen and very tender. The combination of these things means I am getting very little sleep - maybe 3 hrs a night on average. So I'm knackered!

Aiming to buildup excercise after Easter and hopefully other ailments will ease off.

However despite the pain the RPLND and hemiscrotectomy were well worth it - I know the situation and can start to lookforward again.

I hope thus update is useful and wish you and husband all the very best of luck. 

Good morning, I’m so sorry for your diagnosis, the waiting is the worse! Hubby has seen the professor that done his hydrocele and he said yes the ball itself and surrounding tubes etc needs to be removed but urgent not priority??? So he is still waiting for this surgery, he has his pre assessment next week so I’m hoping it won’t be too long after that, I’m not looking forward to his recovery as he had such a bad one last time and ended up in hospital with sepsis a week after the previous surgery, he was really poorly all over Xmas and new year and only now fully recovered from that, but we will deal with whatever we need to, I wish you the very best in your treatment 

Hello, my husband has also been diagnosed with a testicular sex cord stromal tumour, specifically a granulosa cell tumour. He had his testical removed 7 weeks ago and is now awaiting a date for RPLND. It’s a scary place to be with so little information being available. My husband is 53 and in good health so hoping that’s a positive. I think it will help him to know there are others with a similar rare cancer. 

In some ways little information helps - the research uses such small sample sizes you can dismiss any negative information as being statistically insignificant- that was my approach when feeling down.

There is quite a lot of info on RPLND through various testicular cancer forums on Facebook and Reddit but you can only read so much.

RPLND is becoming increasingly a primary treatment rather than chemo/radiotherapy so surgeons are getting better. There are about 2 done a week in the UK - the most at the Royal Marsden so it's not as unusual as it was.

I'm improving everyday but I really think it helped being fairly fit before helped massively and work on the stomach muscles before the op.

Hope it all goes well for you both.

Thank you for your reply, it’s good to hear from someone that’s been through it. How long before you were mobile after the operation? Also we have to travel nearly 4 hrs when he will be ready to come home, will he be more comfortable in a car or a train? Did you need a lot of help on your return home? Sorry for all the questions!! 
Good to hear that you are making a good recovery. 

I was walking to the toilet the first day. Small walks on the ward from day three. Op was on Thursday and discharged the following Tuesday for a 2hr30min train journey home with taxi either end. Train worked well as I could stand up and no seat belt. I did go first class which was worth the more comfortable seat but not cheap. Also we arranged assistance at both stations so a wheel chair to take me to the carriage and help with bags. Just arrange a little in advance. It also means avoiding queues and crowds.

I was doing short walks as soon as I got home and one 5 Mike walk after 2 weeks. But take each day at a time!

Good luck.

Hi Mousse - just checking in to see how things are going with your husband. What are his Dr's saying about post RPLND follow up? I'm on 3 month scan/ surveillance.

I am slightly surprised that there is not more interest in my case and your husband's given the rarity of yhe type of cancer we have. Are his Dr's  showing much interest other than just doing the operation?

Hi,  hope you don't mind me joining your chat.  My 29 year old son was diagnosed with the sex cord stromal tumour on Friday.  He had the orchiectomy 4 weeks ago and is scheduled to have the RPLND on 26 April. The cancer has spread to his lymph nodes. As you say Dadster, there's not much info about it and what there is makes scary reading. It's good to hear about your recovery and positivity. Wishing everyone on this horrible journey well.