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testosterone secreting ovarian tumor - stromal leydig cell

Hi,  
This is a long shot, but I am wondering if anyone out there had a testosterone secreting tumor removed, or if any of you know of anyone who did.  My particular one was a stromal leydig cell tumor, (very, very rare indeed) and I would really like to hear from anyone who had any type of testosterone secreting tumor.  It doesn't have to be the exact same type as mine, because I don't think there are many stromal leydig cell tumors out there.  So I'm looking for anyone who had something closely related  whether it be a sertoli leydig cell (a little more common than mine but still rare) or any other type of testosterone secreting sex cord tumor.  The precipitous drop in testosterone after surgery (Oct. 2006) has been tough biochemically and I would love to be in touch with any one who experienced something similar.  

I have been periodically checking this forum since discovering it prior to my surgery, but had hesitated to post much because of being in, what I guess is, a rather unique situation.  The presurgery advice I gleamed from here was invaluable.  Everyone on this site is just wonderful.
Thanks!
19 Responses
Avatar universal
Sorry, forgot to post my comment!  I was just diagnosed with a microscopic ovarian tumor.  Of course they can not see it thru ultrasound or MRI.  They are going on my high testosterone levels from the ovaries and my symptoms of an enlarged clit and 24 X 7 sexual arousal.  I have been taking Proscar to help reduce facial hair and increase scalp hair prior to having any of these symptoms as I have PCOS (Polycystic Ovarian Syndrome) since I was 29.  I am now 60.  I am concerned that the Proscar may have caused my symptoms, but my endo says no.  I asked them to see which ovary the high testosterone is coming from but they want to take both ovaries.  I'm scared because I've never been in menopause and I'm afraid of how the chemical changes will affect me.  I'm also afraid of this being cancerous.  I'd love to compare notes.  Lois
Avatar universal
Did you have to go thru chemo after the removal of the tumor?  Lois
Avatar universal
I would love to chat with you!  My yahoo email address is ***@****  That's an L before the 7.  Thanks!  Lois
Avatar universal
Hi all,  

Does anyone know how LoisF and I can share private contact info.?  Medhelp deletes email addresses.  Before I get into a lot of details here, I am wondering if there is a way I can contact LoisF directly.  Thanks in advance.

LoisF,

I am so relieved to receive your reply.  I was afraid I was close to being the only one.  First, to answer your question:  No, I did not need chemo. And, I understand not wanting to have everything removed.  I know a lot of the women on this forum feel differently, but I wanted to find out what my tumor was before having a TAHBSO, i.e. uterus, both ovaries and more removed.  So I had just the one tumor containing ovary and affiliated tube removed with the understanding that I would go back and get everything out if it was cancerous.

I got opinions from three gyn/oncs prior to surgery.  If you have not already done so, I encourage you to consult with at least one gyn/onc.  

Although my particular tumor is a type of ovca, according to my gyn/onc, it was very indolent.  Based on the pathology report, my terrific gyn/onc and the tumor board said that taking it out was all that was needed.  They did not recommend more surgery, just close follow-up.  

I will write more about my post surgery experience later.  Again, I am very happy to hear from you.
Avatar universal
Thanks for your contact info. but I worry about it being posted here.  

It is too late to call you now.  I have Verizon too.  I wrote down your number & will call you tomorrow.  To be safe, please write Medhelp and ask them to immediately delete your personal contact info.  It is probably better if it was not here.  Everyone and their cousin may be calling you.  This may also be why they do not let us post email addresses.  I seem to recall that on the bottom of the Medhelp home page is a link entitled, "Contact Us."  Earlier today I wrote them asking if they could delete the profile that I inadvertently posted as a comment above.

Looking forward to talking to you.
Avatar universal
So the other women on this forum don't think I am totally crazy to not have a TAHBSO, I want to add a little about what I have learned about these types of tumors.   I am not in the medical profession, so please don't take my word for this.  All through this experience, I have done extensive research (expecially pre surgery).  Searching such key words as "testosterone, ovarian tumor, women" on pub med and looking through medical books, etc.  I got the impression that most testosterone secreting tumors are usually slow growing with a good outcome.  Some, not many, are even benign.  I wanted to find out what I had (via the path. report) before I had everything out.  So I hope you find that reassuring. They are rare.  I have found less than ten cases of women with my type of tumor in the medical literature on Pubmed (4,500 medical journals), so I view mine as super rare.
Avatar universal
Hi
Don't know if this helps but I had a stromal sex chord tumour removed in October 2006, after being diagnosed 14 years prior with PCOS.  Anyway to cut a long story short, I suffered the horrendous side effects of this virilizing tumour, weight gain, excess hair to abdomen, face, arms legs etc, severe male pattern baldness, loss of periods (14 years worth!) and clitamology, anyway following diagnosis I underwent surgery (laparoscopy) and had the tumour, fallopian tube and ovary (unilateral oopherectomy) removed. I was out of hospital in a week, had a week under local nurse care and returned to work the week after that!.  I must say that almost two years on and the only thing that has returned to normal are my periods (after 18 months) oh and my testosterone level subsequently returned to normal at 1.3 (the highest I reached with the tumour was 9.4).  I know when I had my surgery I had pictures and everything took, as well as gave written consent for the publication of the case history due to the rarity of these tumours!  Anyway hope everything goes/is going ok for you.  Regards, Sarah
Avatar universal
Sorry forgot to mention that the tumour I had was a stromal leydig tumour also.
Avatar universal
Did your excess hair cease to exist? How about the male baldness? It looks like I am at the beginning of something similar. I have both conditions. The excess facial hair has been going on for a couple of years and i am 30, but it really became bad this last year and I cant take it anymore. Then just a few days ago I noticed a receding hairline for the first time ever.

I had an ultrasound done recently and they found 4 fibroid tumors. My doctor said it was up to me to if I wanted to see a specialist. So I don't think they think its very serious if they are leaving the choice up to me, but I obviously have some type of testosterone issue. My stomach sometimes blows up too and makes me look like I am 5 months pregnant. I have other things too but honeslty what bothers me the most is the facial hair and receding hairline.

Anyway if you have anything helpful to tell me I would appreciate it. I am at the beginning of my research of all this and I am scared that nothing can be done. There are no definitive answers out there. And I thought fibroids were caused my high estrogen, which is the opposite of high testosterone. I am just a little confused right now.
Avatar universal
I'm now 41.  At 19, I had a benign tumor removed from my left ovary.  This was 1986, so I have no idea what the technical term for my tumor was.  The doctor said it was the size of a large grapefruit, and that was why my back hurt so terribly.  I hadn't had a period in over a year, had a mustache, my voice got very deep, I gained 35 pounds of muscle in 3 months, had a very enlarged clit, and 24/7 sexual arousal.  I was attending college on a softball scholarship and suddenly began to hit the ball twice as far as everyone else (and I sweat more than most men).  I also became very aggressive, which was totally against my nature.  Many symptoms!  I was very embarrassed, as all this started happening just after I fell in love with a wonderful man.  He is now my husband.  We've been together 23 years now.  The doctor removed the tumor, ovary, and a portion of my fallopian tube.  Exactly 28 days after surgery, I had my first period in over a year.  I had a normal menstrual cycle until I got pregnant.  I had two children who are now 18 and almost 15.  My libido returned to normal, however, my voice never returned to normal.  I still have to shave my upper lip and forearms daily and pluck chin hairs because I can't afford laser removal.  A few years ago I had a total hysterectomy due to numerous fibroid tumors and a large cyst on the remaining ovary.  I wish I had my medical records from '86 so I could say exactly what I had, but I just don't know.  But it's nice to know I'm not alone.
Avatar universal
Hi Carmen, Sorry to hear that you are going through the same thing....it is a nightmare!  I would love to give you some good news and say that I have noticed an improvement in the symptoms...but unfortunately I cannot.  The hair loss and hair gain (seems really strange you can suffer from both at the same time)  have not improved in any way.  It looks as though this problem is here to stay at least for me.  Dont know which country you are in but if it is the UK; then you may experience problems in getting medical help to help the situation after any operation.  I am currently having a real battle getting ANY medication on the NHS.  Well anyway Carmen, hopefully things will get better for you.  I wish you all the luck....  Please keep in touch it would be great to hear how things are going for you.
Avatar universal
I think I have been mis-diagonsed for the past 5yrs with PCOS. I went off the pill I was tired of the hormones. I went to see a doctor after 2yrs of not having a period. when tests were done I have an extremely high testosterone for a woman. I have a CAT and Ultrasound next week. I am praying its not a tumor, my the doctors think it probably will be one. I will get my results next. I have excessive facial hair, I have to shave everyday. I have acne. I have a deep voice which has deepened over the past 2yrs. I just want to get out  of this misery! I will post more when I get my results next week.
Avatar universal
The odds are that you will be OK even if it turns out to be a tumor.  I did a ton of research about testosterone secreting tumors both before and after my surgery.  It appears that they are very slow growing and rarely have malignant activity in women.  2.5 years after my stromal leydig cell tumor was removed all my exams and tests have come back clear.  My facial hair has abated too and my voice is back to normal.  Some other symptoms are still there though.  I hope you find this reassuring.  And you may not have a tumor after all.  Please let me know how you are doing.
Avatar universal
I just got my results today from a CT scan and ultrasound. My right ovary is 2 and 1/2 times the left. I have a pelvic exam scheduled for next week. I am praying that everything will be fine and can be removed through a simple procedure. I know God is me, and with us all. It seems so many women go through so many issues. I was misdiagnosed for 5yrs with PCOS at least now I know what is wrong. I am only 25, and I know I want children after I get married. With PCOS its a struggle to get pregnant, but whatever is wrong with my ovary can be healed or fixed... so I know I can have children in the future. The doctor says the results show that its not affecting any other organ. But they cant tell what's in it. I have you all in my prayers. People that are scared, please don't be. God loves us all and he always makes the best way out of no way... have faith... all will be well. At least its good u found out now before maybe it turned into something else.
Avatar universal
Is your doctor a Gyn-Oncologist ?  If not, please get an appointment with an Gyn-Oncologist for his/her opinion.   They have the most experience and knowledge.  Going through the archives of this forum you will find many women saying it is crucial you consult with one.  Testosterone secreting tumors are rare and you need the most knowledgeable person treating you.  It may turn out not to be a tumor, but you still want to go to a gyn-onc.  
Avatar universal
Yes, i saw a gyn-oncologist. i actually had surgery a month ago. the surgery was successful. the sad thing is was cancer. but thanks to God all lymph nodes, pelvic area, or cells that were taken out to test for cancer came out negative for cancer. the doctor told me no chemo is needed, since i just moved to a new city and state... he is going to refer me to another doctor for more follow ups. But he said it was GREAT NEWS! God has been so good i was so scared of chemo, and it turn out i wont need it because all the cancer is what the took out. I will keep you posted GreenWoods. Thanks for the time and attention you gave to me. the tumor was  sertoli leydig cell.. which was testosterone secreting.
Avatar universal
i am a male. few months ago, i palpated a tumour in my 2 testicles. the doctor had to remove them. he was able to remove only one but the other one was so small that he couldnt find it.He said that is  leydig cell. my testosterone became very low , i was placed on testosterone patch. but then i wanted to make kids, for i have not got any, we went to fertility clinic and did sperm count. it turned out that i am not producing any sperm.  By the way i just had a kidey transplant done. is any body with similar issues. i and really new to this site.
Avatar universal
A related discussion, Do periods always come back after surgery?   was started.
Avatar universal
A related discussion, testosterone secreting ovarian tumor - removal was started.
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