Testicular Sex Cord Stromal Tumour

Hi Dadster and a very warm welcome to the online community which I hope you'll both find is both an informative and supportive place to be.

I'm sorry to read that you've just been diagnosed with a rare form of testicular cancer and it's natural to want to reach out to talk to others in a similar position.

I noticed that your post hadn't had any replies yet so responding to you will 'bump' it back to the top of the discussion list.

While you're waiting for replies, It would be great if you could put something about your diagnosis and treatment plan into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

You could also, if you haven't already, use the search facility in the group to look for previous posts about malignant TSCST.

Hi. Thanks for the reply. I've added a little more detail on my profile but still awaiting a detailed diagnosis. My search on TSCST came up with 0 results.

My main concerns are:

1) Maliginant TSCST appears very rare so would really welcome contact from anyone who has had it and how they were treated.

2) It appears TSCST does not respond to chemo or radiotherapy - are others aware of other approaches?

3) Are there any experts in the UK who I might be able to turn to given the rarity of this type of cancer?

Thanks to all who read this.

Good morning, my hubby had an ultrasound last Wednesday as a discharge final thing for a related procedure (hydrocele) the person doing the scan said he has a large tumour and unlike something he’s not seen before in 35 years (wasn’t there 4 weeks ago), he needs to get his testicle removed asap(waiting for letter/phonecall) did you have a similar experience? Of course I have to google it but not finding anything related , 

Hi there. Sorry to hear about your fella. I dont think an ultrasound can determine the type of testicular cancer your husband might have - assuming it is cancer. 

In my case I found a hard lump and the GP agreed it was a real concern. So then within 4 weeks it was ultrasound, ct scan and ball removal. But only after the op could they tell me what type of cancer, the staging and risk factors. So quite what the ultrasound person thinks I am not sure. To be honest they should not have said anything as it just sets hares running and increases stress levels.

If it is cancer then the chances are your husband will make full recovery with or without further treatment- the stats for testicular cancer recovery are one of the best. So whilst you will both worry and be upset there are some positives to hold on too and the orchiectomy isnt that bad to deal with once you accept it.

I have found the waiting the worst thing. I have asked for a 2nd opinion for my cancer which is extremely rare and doesn't respond to chemo/radiotherapy. So finally seeing another consultant on tuesday to discuss further surgery - which might be curative and or preventative but either way reduces the risk of recurrence.

I wish you both well, itsca stressful time for you both so mutual support required from my experience. Good luck and if its sertoli cell then I'm happy to pass on what I know.

Thank you for replying, after the last month don’t think anything could top what hubby’s been through, he had sepsis after first op and had to have second emergency op, the scanner did say it was above his pay grade to say what it is but the testicle needs removing asap, we both glass half full kind of people so not worrying as such , and what I’ve read it’s a good outcome , just the waiting game is awful isn’t it, I wish you the best in getting to see someone else and for the answers you need, a very stressful time for you and your family , best wishes 

Hi! My husband has been diagnosed with malignant sertoli cell tumor, and is due to have RPLND surgery! Can you please tell me if you have had this done and any information! 
Thanks! 

Hi there.

Looks like there is another member to this select club ....unfortunately. I'm sorry to hear about your husband's situation.

I am currently in recovery mode from an open rplnd 10 days ago and plus a hemiscrotectomy - which was a minor addition to the operation. Get the results back on the nodes on the 26th with a degree of anxiety but also an acceptance that there's nothing more that can be done irrespective of those results.

What would you like to know?

Thank you so much for your reply! How was the operation and what’s the recovery like! 
Thanks! 

Well the operation is painless its when you wake up that it hurts!

I went into hospital at 9am on a thursday and had about a three hour wait until called through. My partner could stay with me til the last minute. I had an epidural and the drip.

The op itself took about 4 hours although I was unconscious for 8 in total. Woke up in CCU with lots of drips and wires attached and was moved to the ward the next day (friday) where I stayed to Tuesday.

Personally I didn't find the physical pain too bad and didn't use much of the self control pain relief - I has fentanol on tap. However I did have constant nausea which was horrendous and kept me awake most of the time. I went for my first short walks on Sunday and on Tuesday got a two hour train home from London. I was eating on Saturday. I have used laxatives twice but each time they have worked too well so go steady!

Being at home is amazing as hospital is just uncomfortable at best although the staff were really good. Every day gets slightly easier but I really struggle to sleep and wake up with a headache and nausea every morning.

For the first 7 days doing anything including eating would send my body into a bit of shock with uncontrolled shaking but some breathing excercises got it under control.

I am now up to 3 short walks a day. Had a peddle on an excercise bike and did the washing up this morning. My back is very sore but as I get more confident in standinding tall I hope that will ease off.

No idea how old your husband is but I'm nearly 56. But got myself in good shape before the op and lost 1.5 stone in advance and worked quite hard to strengthen my stomach muscles - although far from a six pack! As with any operation being fit beforehand can only help.

I think that's most of it. He'll end up with one hell of a scar and a story to tell. I'm only 10 days down the line but hopefully improvement continues and quickly.

It will be hard on you both so look after each other and don't be afraid to ask for help from friends and family. 

Hope that helps and happy to answer anything else. Sending positive vibes.

Thank you so much, this has been so helpful! You mentioned in one of your post if they are any experts in this type of cancer, just wondering if you found any!  
Thank you so much!