Seritoli leydig cell tumor

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Seritoli leydig cell tumor

by tmclymer on Mon Nov 30, 2015 04:25 PM

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My daughter was diagnosed when she turned 16, in 2013. She had ovary moved, and then 6 months of chemo therapy. She also tested positive for the dicer1 mutant gene associated with this for of cancer. Thankfully we had drs who where willing to reach out for advice of treatment by a Dr who specialized in this form of cancer at MD Anderson in Texas. So far cancer free 2 yrs after diagnosis. Just wondering if there are any other people with this form of cancer and how they are doing. It's unknown if this will show up in the future. Just curious as to anyone 5,6,7,8 years out after cancer diagnosis, if they have had a recurrence of this cancer or if your still cancer free. I pray everyday for everyone who has to go threw cancer. 

RE: Seritoli leydig cell tumor

by Rockcliffe8 on Wed Nov 30, 2016 10:01 PM

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I thought I had replied to this message earlier. I too had a Sertoli leydig Tumor. Stage111c. I I am 67 ang live in England. Full hysterectomy, followed by chemo. Now NED for 6 months fingers crossed. There is very little guidance out there. I was told at The Marsden I was only one that year. I am curious as well. Let me know how your daughter does

RE: Seritoli leydig cell tumor

by Kittyj on Sun Feb 05, 2017 08:34 PM

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Hi, I was diagnosed with Sertoli Leydig Cell Tumor recently in August of 2015 at the time I was 20. Before they diagnosed me they did not know what kind of cancer it was. In July of 2015 they removed an 8 lbs pound tumor that was my  right ovary. After that  my doctor sent slides to Boston where they diagnosed it. I went there to meet with the doctor who specialized in this. The partner of his was located in Texas. After that August 25 I started chemo and my last day was December 7 2015. The doctors found that the mass had all four of the components that make the Sertoli Leydig Cell Tumor and a mucinous component as well something they knew existed but had never seen. They said I was one in 13 in the world.My cancer was a stage 1a sertoli. Glad I found this site. And someone young as I am.

RE: Seritoli leydig cell tumor

by Rockcliffe8 on Sun Feb 05, 2017 09:24 PM

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Good luck. It is frightening when no one has seen your kind of Tumor before. I live one day at a time with fingers crossed. I have also developed endochrine problems thought to be associated with this type of Tumor so keep an eye out for thyroid problems.

RE: Seritoli leydig cell tumor

by NanceK on Wed Jun 07, 2017 02:14 AM

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Hi there - it's been a while since you wrote this but i'm new to the site. I was diagnosed with Granulosa Cell tumor on 2003, had recurrence in 2011 - pathology sent to Boston where it was determined I actually has Sertoli-Leydig Cell tumor. In 2003 I just had hysterectomy, was stage 1A. Recurrence in 2011 - more surgery, CA had spread to small intestine and diaphragm (like stage 3). Did IV and IP chemo (6 rounds). Another recurrence 2016, surgery removed it. Cancer free for now! I was 41 at diagnosis, am 55 now. Still here and fighting and staying strong. I pray your daughter is well. I've heard the dr at MD Anderson is amazing... Hope to hear from you.

RE: Seritoli leydig cell tumor

by Rockcliffe8 on Wed Jun 07, 2017 06:43 AM

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On Jun 07, 2017 2:14 AM NanceK wrote:

Hi there - it's been a while since you wrote this but i'm new to the site. I was diagnosed with Granulosa Cell tumor on 2003, had recurrence in 2011 - pathology sent to Boston where it was determined I actually has Sertoli-Leydig Cell tumor. In 2003 I just had hysterectomy, was stage 1A. Recurrence in 2011 - more surgery, CA had spread to small intestine and diaphragm (like stage 3). Did IV and IP chemo (6 rounds). Another recurrence 2016, surgery removed it. Cancer free for now! I was 41 at diagnosis, am 55 now. Still here and fighting and staying strong. I pray your daughter is well. I've heard the dr at MD Anderson is amazing... Hope to hear from you.

Thanks for replying. I am the lady from England. Still officially NED but not feeling right. Dreading my next follow up. Your tale gives me hope. There is so little info out there. Please keep letting us know how you do. Do you have any endocrine problems like thyroid or diabetes insipidus as well?

RE: Seritoli leydig cell tumor

by NanceK on Wed Jun 07, 2017 03:09 PM

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Hello Lady from England! I do not have any endocrine/thyroid problems at all. Have heard that those are common with cancer, but none so far for me. Sorry to hear you are not feeling right - make sure to share all your symptoms with your dr and insist on the testing you need. I never had any scans between my initial diagnosis and first recurrence  - dr said they weren't necessary - but if I'd had a CT scan we would have found my recurrnece sooner (probably before it had spread). I get CT scan or MRI at least once a year now - that's the only way my recurrences have been found. I've had NO symptoms when my cancer recurred. I pray all goes well with you - stay strong over there accross the pond :)

RE: Seritoli leydig cell tumor

by sybil22 on Tue Apr 30, 2019 07:19 AM

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 Hi

I too am from England. I had stage 1A sertoli leydig tumour and had a total hysterectomy last Dec.

I was told it was well differentiated and that all was well.

For the first month or so I felt very well but am slowly feeling like I did first time round.

I had virilisation symptoms and these seem to be slowly returning plus last time round I had extremely painful limbs,terribly dry and fragile skin that would tear easily,hair loss ( and gain ) fatigue etc etc..

I am awaiting a CT scan and the results of blood tests to see if this might have returned.

There appears a link between SL and thyroid problems via DICER 1 gene. I have read everything I can on SL inc wading through medical articles that make little sense to the layman. 

My surgeon in Cambridge was lovely but had no idea there was a genetic link to SL..!

I think what upsets me the most about this particular cancer is that no dr seems to want to know any symptoms. No medical article offers any clue,other than the usual " virilisation,swollen stomach" type thing..and it makes me think there are many symptoms of this nasty disease going under the radar.

I fully understand its rarity but frankly think there are missed opportunities for a faster diagnosis which would stop the distressing virilisation signs quicker. They are apparently slow to reverse if at all.

Anyway,just wanted to say hello to all my fellow Sertoli Leydig sufferers.Glad I found this site.

RE: Seritoli leydig cell tumor

by Rockcliffe8 on Tue Apr 30, 2019 03:40 PM

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On Apr 30, 2019 7:19 AM sybil22 wrote:

 Hi

I too am from England. I had stage 1A sertoli leydig tumour and had a total hysterectomy last Dec.

I was told it was well differentiated and that all was well.

For the first month or so I felt very well but am slowly feeling like I did first time round.

I had virilisation symptoms and these seem to be slowly returning plus last time round I had extremely painful limbs,terribly dry and fragile skin that would tear easily,hair loss ( and gain ) fatigue etc etc..

I am awaiting a CT scan and the results of blood tests to see if this might have returned.

There appears a link between SL and thyroid problems via DICER 1 gene. I have read everything I can on SL inc wading through medical articles that make little sense to the layman. 

My surgeon in Cambridge was lovely but had no idea there was a genetic link to SL..!

I think what upsets me the most about this particular cancer is that no dr seems to want to know any symptoms. No medical article offers any clue,other than the usual " virilisation,swollen stomach" type thing..and it makes me think there are many symptoms of this nasty disease going under the radar.

I fully understand its rarity but frankly think there are missed opportunities for a faster diagnosis which would stop the distressing virilisation signs quicker. They are apparently slow to reverse if at all.

Anyway,just wanted to say hello to all my fellow Sertoli Leydig sufferers.Glad "" target="_blank" rel="nofollow">http://sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad I found this site.

Sorry to hear you are having problems. On a positive note I am still here nearly 4 years later with a much worse initial diagnosis My oncologist said she he’d never seen SL before nor was she likely to in the future so like you I feel nobody understands. I have been tested positive for the D ICER1 gene and do have endocrine problems though nobody believes they are connected to the SL. I do, but what do I know. But it’s so rare nobody is interested other than you Keep your fingers crossed. From what I have found out it is a very slow cancer which is its only positive My annual check up is next week so it’s wait and see time again

RE: Seritoli leydig cell tumor

by sybil22 on Wed May 01, 2019 02:09 PM

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On Apr 30, 2019 3:40 PM Rockcliffe8 wrote:

On Apr 30, 2019 7:19 AM sybil22 wrote:

 Hi

I too am from England. I had stage 1A sertoli leydig tumour and had a total hysterectomy last Dec.

I was told it was well differentiated and that all was well.

For the first month or so I felt very well but am slowly feeling like I did first time round.

I had virilisation symptoms and these seem to be slowly returning plus last time round I had extremely painful limbs,terribly dry and fragile skin that would tear easily,hair loss ( and gain ) fatigue etc etc..

I am awaiting a CT scan and the results of blood tests to see if this might have returned.

There appears a link between SL and thyroid problems via DICER 1 gene. I have read everything I can on SL inc wading through medical articles that make little sense to the layman. 

My surgeon in Cambridge was lovely but had no idea there was a genetic link to SL..!

I think what upsets me the most about this particular cancer is that no dr seems to want to know any symptoms. No medical article offers any clue,other than the usual " virilisation,swollen stomach" type thing..and it makes me think there are many symptoms of this nasty disease going under the radar.

I fully understand its rarity but frankly think there are missed opportunities for a faster diagnosis which would stop the distressing virilisation signs quicker. They are apparently slow to reverse if at all.

Anyway,just wanted to say hello to all my fellow Sertoli Leydig sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad "" target="_blank" rel="nofollow">http://sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad "" target="_blank" rel="nofollow">http://sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" rel="nofollow">sufferers.Glad " target="_blank" 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Sorry to hear you are having problems. On a positive note I am still here nearly 4 years later with a much worse initial diagnosis My oncologist said she he’d never seen SL before nor was she likely to in the future so like you I feel nobody understands. I have been tested positive for the D ICER1 gene and do have endocrine problems though nobody believes they are connected to the SL. I do, but what do I know. But it’s so rare nobody is interested other than you Keep your fingers crossed. From what I have found out it is a very slow cancer which is its only positive My annual check up is next week so it’s wait and see time again

Thank you so much for replying!

I have odd symptoms with all this...not listed but I know they are real.

My skin was very fragile and tore easily. My hair not only fell out but was extremely dry and changed appearance too.

My lower limbs were stiff and painful and I seemed to suffer sight problems too..and fatigue was a very real issue too.

I haven't been tested for the DICER 1 gene but have requested it..was initially told there was no genetic link to SL..but after I told my consultant he looked it up but still hasn't offered any advice or offered me the test.

All of my symptoms  have come back plus the virilisation symptoms too. I know these are slow growing tumours and take heart in it being picked up early but truly think Drs should maybe listen and ask questions of their patients in order to perhaps identify some of the weirder signs of SL.

There is so little online to read,and trust me I've read it all ,that whenever a Dr comes across this dx maybe they should consider adding that knowledge to the list of things known?

I believe you mentioned you were under The Royal Marsden ( my sister was a nursing sister there for years ) I am under Addenbrookes Cambridgeshire...both of these are large world renowned hospitals..and yet still they seem unaware of SL..just wish they would ask the very few of us who have had it to describe how they felt more. Seems like a lost opportunity to learn.

I hope things go well for you  next week..perhaps if you feel like it you could update us here?

Will be thinking of you 

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