I am 42 & just diagnosed with granulosa cell tu... - My Ovacome
I am 42 & just diagnosed with granulosa cell tumour on ovary. Would like to hear from other women with same diagnosis.
Hi
I was diagnosed as having a GCT after its removal in February this year. There have been a couple of others using this site also having this rare form of tumour. I did not have to have chemotherapy as I was told this has no effect and all I have had since the diagnosis is two CTs- the result of the second I will receive today. I did have a hysterectomy and oophrectomy when the 'ovarian cyst' was removed.
I would be happy to chat to you- it's a shock even if the outcome is very positive. Best wishes
Anne
Thank you so much Anne for replying. I have been told i cannot have a full hysterectomy until after they have removed my left ovary & fallopian tube in 2 wks. Do you mind me asking if you are pre or post menopausal? I have found it very hard persuading my gp that there was something wrong & have had symptoms for 11 months now. I am hoping we have caught it early enough to not have spread anywhere else. What is scary is that nobody medical i have seen seems to know much about this rare type of tumour in terms of prognosis or recurrence. Have you found this too?
I hope you get good news today. Best wishes x
Hi
I've had very good news today- the gynae/oncologist doesn't want to see me again as the scan was clear.
I was post menopausal and, even though the cyst was found in October 2010, I 'slipped through the net' and did not have surgery until February and the diagnosis in March.
The prognosis for these sort of tumours is good- they do reoccur, but according to the specialist I saw today, could be at least 20 to 30 years down the line.
I'd be happy to ring you if you want to give me your number- you can e-mail me on r.green18@sky.com.
Best wishes
Anne x
Ps There is a specific website for GCT- google it- it's based in New Zealand and I'm a member.
Thank you so much Anne. I'm so pleased you got good news x
My pleasure- keep in touch if you have a wobble. Good luck with the op.
Love
Anne
Hi
I was diagnosed with a Granulosa Cell Tumour on 8th Nov this year after surgery in Sept. I am 34, my periods stopped back in April and I knew something wasn't right as I had a bloated stomach, back pain and was in general discomfort. Due to my age and the fact my husband and I have been trying for children, I actually thought I might be pregnant but after many numerous negative tests (including a negative blood test through my Drs surgery) I was told that sometimes a woman's period stops for no reason and I shouldn't worry! I wasn't happy due to previous gynae problems when I was younger and asked to see another Dr. This Dr decided she wanted to know what was going on inside and I was sent for a routine scan in July to have a look. The scan showed a large mass dwarfing my right ovary (it measured 10cm by 10cm) and I was immediately referred to my local gynae oncology dept. From there I was told the mass was nothing more than a large "cyst" (even though it was solid in content) and that I would have keyhole surgery in Sept to have it removed. I never once had scans or blood tests to determine if it was anything more sinister.
The day of my operation came and when I awoke and was taken to my room, the surgeon came to see me to tell me she had been unable to remove the "cyst" by keyhole as it had grown to 16cm by 16cm, and therefore had to perform open surgery. She advised me that the "cyst" had ruptured whilst she was trying to remove it and that she had had to remove my right fallopian tube and ovary along with the "cyst", but there was nothing to worry about. She said the "cyst" would be sent for biopsy as routine and I would be contacted in due course.
I was told that my biopsy results would be back within 3 wks. When it reached 4 wks and I still hadn't heard anything, I rang only to be told by my consultants secretary that my biopsy had been sent for a second opinion. I still felt all would be ok as never once had anyone given me any cause to think it was anything other than a normal "cyst". I received a letter to go back to see my consultant on 8th Nov, and went on my own believing it was just a normal follow up appt with my consultant after surgery. Imagine my shock and surprise when my consultant told me it was a granulosa cell tumour and was a rare form of cancer! It was alot to take in.
I was assigned a keyworker who took me to another room and explained that little is known about granulosa cell tumours. She said it was rare, attributing to only 2% of all ovarian cancers, and was normally found in post menopausal women and young girls - it was rare to see it in someone my age. She advised me that there is a small risk of this type of cancer reoccuring - not just in 3, 5 or even 10 years - it can be anything up to 30 years later. She said that although normal treatment for this type of cancer is to have a hysterectomy and oophrectomy, because of my age and the fact my husband and I still want children, they were reluctant to perform such a procedure and therefore my consultant had decided to leave things with the removal of my right side only. She advised me I would be monitored on a 3 month basis for at least the next 5 years with inhibin blood tests (apparently it can pick up this form of cancer) and scans. Because I was on my own, I didn't think to ask what stage or grade my tumour was or any other questions. I was a bit numb to be honest. It was evident this type of cancer was rare as a nurse came to do my bloods and she had to go and ask the consultant which blood vial to use - and he didn't know - he had to look it up in his book!
I rang my keyworker back the next day as I realised I hadn't asked many questions, and I had gone home and looked it up on the internet and had started to scare myself a bit to be honest. She was lovely and answered any questions I had as best she could, but she admitted that I should stay off the internet in search for info as she had been trying to research it for me to send me out more details and had found that lots of reports online contradict each other. I asked what the recovery rate was for this type of tumour - she explained that when a granulosa cell tumour is caught in the early stages (stage 1) then there is 95% rate for full recovery. She explained that my tumour had been a Grade 1 (on a scale from 0-4) and that it had been a stage 1c - it would have been a 1a but had been moved up the scale due to the tumour rupturing during surgery. She said she would send me out more info as soon as she could obtain it, but here we are 3 wks later and I have had nothing - I can only assume she is struggling.
So, the point i'm at is that I am waiting on the results of the blood tests they took on the 8th Nov. They did them as due to the tumour rupturing during surgery, they want to make sure they definitely got rid of it all. If they have, then I will be back in January for a scan and more blood tests, if not, then there is a possibility I will have to have more surgery. The bloods should be back this week.
I have found a few bits of viable information on the internet - the foundation that Ann mentioned is probably the best. It is the Granulosa Cell Tumour Foundation based in New Zealand and this is the link gctf.org.nz/ The info on there has been very useful for me. The one thing that does worry me is that from the information I have seen, the rate of reoccurence is higher than i've been led to believe - the GCTF states the figure to be around 60% of all cases - that's not a small risk of reoccurence if you ask me! I am being positive and trying to get on with my life but it's hard when I know I will have this hanging over me for possibly the rest of my days.
I am sorry if this all seems so long winded - it's just I wanted you to know my whole story. And i'm glad you pushed with your GP to get to the bottom of things as I did - we all know our own bodies and had I listened to the first Dr who said there was nothing wrong, then my prognosis might have been very different.
You take care and if you wish to chat, just let me know and I will send you my email address. Good luck with your operation and let us know how you get on.
L xxx
Hi L....thank you so much for taking the time to post this. It has been so helpful to read of another's battle with granulosa cell tumour at a young age. It does seem so rare, & to be honest that is what frightens me, as I don't feel I can have total confidence in the health professionals dealing with my case. I have been ill since January of this year, when my periods just stopped, having always been regular except during pregnancy. I am lucky that I have got 3 beautiful children. I went to the gp numerous times between Jan & May & was fobbed off constantly, with them saying that it was probably early menopause, my weight or diabetes.....plus other ailments, none of which were the case. Eventually i had blood tests & i asked for a CA125 test which came back negative, but the other results showed that my oestrodiol levels were significantly raised to 2400(normal level <300). I had bloating, back ache, abdo pain, & was very tired all the time. Those bloods were repeated a month later & oestrodiol was still high , and CA125 still negative, which I now know from resaerching granulosa cell tumour, is typical of this type of ovarian cancer. I then paid to see a gynacologist privately in Sept. I just knew something was not right but felt no one was listening. The gynacologist was puzzled, ordered ultrasound scans, but they appeared normal. although my ovaries were not visible, so referred me to an endocrinologist who was also puzzled!! He ordered more bloods and a specialised procedure called venous sampling, and a CT scan. The CT showed a 'mass' on my left ovary, measuring about 6.5 cm by 6.5 cm. The venous sampling showed the oestrodiol was being produced from the left ovary, and was now 5000, nearly double what it had been. Back to the gynacologist who diagnoesd GCT. I am having left ovary & fallopian tube removed in 1st instance, if tuour is contained, which venous sampling seems to suggest. It has taken me 11 months to get here, with this 'mass' growing inside me all the while....I am just praying it hasn't spread, and that they can remove it without it rupturing. I am pushing for a full hysterectomy but they won't consider that until they know what stage we are at.
Thank you to the ladies who have replied to me...it means so much to know that i am not alone, and there are people who understand the disease.
Scary times ahead.....i will keep you posted.xx
Hi
I was 22 when I was told that I had stage 1A granulosa cell tumor. That was the worst point of my life! I was exactly the same as you, they told me that I had to have key hole because my cyst was 15cm. I woke up from the surgery and they had told me that they couldnt get it so they had to open surgery!
I was wondering do you still have the worries that it has come back? I always have that worries. The worries come worst when I have my check ups.
Hi, my wife just got diagnosed with Stage 1A GCT too.
What are the concerns she should look out for? Any advice?
What were the treatments or surgery you did?
I was just diagnosed with this last December 2015 and I was wondering how you are doing? I'm 34 and my ovary also ruptured and was staged at 1c. I went through three rounds of chemo just for extra assurance. Any info or advice you could give me would be appreciated. Thank you? 😊
I'm going through the same thing but my doctor is telling me it's debatable if I should have chemotherapy or not.. Did chemo work okay for you?
This is a long shot as I'm not sure if you will be able to see this message but I came here just reading up on a few things and I see that I don't recognize you from our Facebook page. Just wanted to invite you to it. It's called GCT Survivor Sisters. You'll have to answer a few questions and then you'll be accepted in the group. It's a very active Facebook page and you will receive a lot of good info.
How are you doing now? How was the chemo?
Hi Music girl
Please make sure you are your own advocate. At the age of 50 my mother was told she had a tumor on her ovary cause it shut off her bowl. They removed it but didn't tell her that it was cancer. 4 years later while having a bladder tuck they found it in many places in her abdomin. I know a lot about it ahe is now 73 years old and been through a lot. I have been to all her Dr app. And know more about it than she does. Go to a specialist it is rare I drive her 4 hrs away every 3 months to Dr Mishner. Prayers for you and a healing.
I too am 34. I was diagnosed yesterday. I received my diagnosis after having what we thought was an ovarian cyst. Turned out to be two GCT’s after results were returned from pathology. I haven’t seen the Oncologist yet. Nice to meet you!
Hi
Hope you are fine, read your post today as I too gave been diagnosed with GCT followed by total hysterectomy. Now the problem is histopathology says it is stage 1A and the surgeon said that there was a 2cm rent on posterior surface which make it 1C. They are suggesting chemo. Did you had chemo. Kindly guide me what to do out of your experience.
Thankyou
Oh and just to add - Anne - thankyou so much for your reply to my question on this site when I was first diagnosed - pointing me to the GCTF was a big help and I am so pleased your scans have been clear and your consultant has decided he doesn't need to see you again. xxx
Hello! I am also new to this diagnosis. I had a routine hysterectomy on Oct 3, 2011 due to fibriods and menstrual migraines.
On my 4 week checkup the pathology came back a big shock a 1.5 cm granulosa cell tumor. The ultrasound didn't even pick it up. ( I had to do a lot of the leg work myself to beg for my pathology and surgical reports which is another story.)
I saw an onc/gyn 10 long days later. He said since the gyn did not stage the surgery or do a wash I needed another surgery to stage it. I had the staging surgery done Nov 21. It was done robotic. This surgery was brutal. I have 6, one inch incisions. Plus the bruising is over my whole abdomen and down my one leg. Swelling is huge.
The good news is the pathology came back NEGATIVE!! So, I will see my surgeon Dec 14 to see what we have to do for future screenings. I am considered a 1a. The tumor was contained in the ovary and it did not rupture taking it out which I found to be not a good sign. I would love to talk with you guys. If you have any questions for me just ask 
Pam
Hi Pam...that's great news !!! Thank you for posting ! It's great to know that it isn't always malignant. I am sure that your post will give hope to others like myself, who are just entering the 'tunnel' towards surgery or diagnosis.
Love Pip x
I had what we thought to be an ovarian cyst removed last week. My OBGYN diagnosed the GCT from the pathology report and consulting with the oncologist. I haven’t seen the Oncologist yet. I see her Tuesday. I am 34yo. You stated they had to do an additional surgery since the original wasn’t staged is that correct? Mine wasn’t either
OK First let me clarify. The 1.5 cm tumor was malignant. From what my onc said granulosa cell tumors are always malignant.
But, when I had the staging surgery he biopsied 14 lymph nodes, the omenum and other tissue samples. They came back negative!
I am what they call a 1a. Meaning the tumor was confined to the one ovary and everything else when I had the total hysterectomy like the uterus and fallopian tubes were clear too. Any more questions just ask.
Pam
Hi Pam did you have an oopherectomy in the 1st instance folowe by a full hysterectomy? That's what my gynacologist wants to do, while tumour is staged. How did you find the surgery?
pip x
Hi! I had a complete hysterectomy due to fibriods and menstrual migraines. We (the dr and I) did not know the tumor was there till she got the pathology back 4 weeks later.
It was then I was referred to a onc/gyn. At that appointment he said that all granulosa cells are malignant. Since mine was small and intact he wasn't expecting anything to show but said that without staging surgery, removing 14 lymph nodes, omenum and other tissue samples there was no concrete way to tell if it spread.
I had the staging surgery 7 weeks after the hysterectomy. The hysterectomy was LAVH and the staging surgery was by robotic. That was the worse one with all the bruising and swelling. That is why I am online a lot during the day when my husband is at work
If I were you, do a complete hysterectomy. What type of surgery is he/she planning for your hysterectomy? Is he staging it then by removing lymph nodes and washings? I am glad to answer any questions. Where are you from?
Blessings
Pam
I also wanted to add that I had a partial hysterectomy 9.5 yrs ago. They left ovaries intact. I had a hemorrhagic ovarian cyst rupture in September of 2017 then they found what they thought was another cyst last month. After it was taken out the pathology indicated it was GCT not a cyst at all.
Hi Pam
Thanks for the info. I live in Merseyside. I am having the ovary & Fallopian tube removed by laperoscopy. Depending on what is found & stage of tumour, I may then have the option to have a hysterectomy at a later date, although the consultant wasn't keen to discuss this until after the laparoscopy.
Pip x
I am assuming you have government health care so they have to follow a certain protocol, ex. getting the ovary and fallopian tube removed first? If this is the case I would really insist later that they give you a total hyst. The odds of getting GCT in the other ovary increase after the first one. When is your surgery going to be?
Blessings
Pam
I go in on 15th Dec. I have said I want a full hysterectomy after Christmas, so hopefully that will be sorted out when I go in on 15th. Where do you come from?
Pip x
I am from the United States. A state called Pennsylvania.
Why won't they do the hysterectomy at the same time? My first surgery for my hysterectomy was done laparoscopy and vaginally. That surgery was a piece of cake I hope yours is as easy!
Blessings
Pam
Hello,
I am 45 years old and I was diagnosed with gct in August of 2011 after an ovarian cyst burst and I found myself having to go to the ER. After a number of scans, they discovered what it was and that I also had a solid mass on my other ovary. My ob/gyn scheduled surgery for me and I had the ovary/mass removed as well as the fallopian tube. When the pathology report came back I was shocked to hear it was cancer. I then decided to go to UCSF, a wonderful hospital in San Francisco, and with a gyn/oncologist decided to have a full hysterectomy, a small lymph node dissection and a perineal washing. The pathology report from this came back with the news of more cancer on the other ovary, as well as on the pelvic wall near my rectum. She was pretty confident that she removed all the cancer, but still, after consulting with a tumor board at the hospital, that I should have chemotherapy as well. I was staged at a 2b. I just finished chemo (carboplatin/taxol). I had 6 treatments spread out every 21 days. Tomorrow, I will receive the results from my inhibins A & B tests. These are tumor markers specifically for GCT.
My doctor said the hysterectomy would make it less likely for the cancer to recur and the chemo she called adjuvant (taking extra precaution).
I hope you are doing well and receive good news after your surgery!!
Blessings,
Laura
Hello I was just diagnosed with GCT on the ovary. I too am thinking of going to UCSF. Did u find a gyn/oncologist at UCSF ? Or did u have the same dr when u started this journey?
How are you doing today? I am considering chemo for granulosa tumor.
This is an old post. It's as well to check the date top right, faint, of the box before replying as, unfortunately, not everyone who was writing is still with us and this can be upsetting for those who knew them.
How are you doing today? Any GCT recurrence?
Hello i am 57 and just diagnosed wth GCT on the ovary. I had a complete hysterectomy on 1-20-14. The cancer is a pT2. Would like to hear from other women ith the same diagnosis. At this time I'm still recovering from the hysterectomy surgery.
I am in the United States and I just got my diagnosis today.
For the last year and a half I knew something was wrong as my periods stopped without warning. They stopped for 6 months straight before having a period. I gained extra weight, have been experiencing what I thought were "perimenopause" symptoms. I had a copper IUD and all my pregnancy tests were negative. My gyno never took interest in why I was not having cycles and of course when I set up an appointment to consult with him I would start. About 8 weeks ago I went to The Emergency Department with horrific abdominal pain. I thought it was appendix but I was diagnosed after ultrasound as having a large 7cm hemorraghic ovarian cyst. My gyno set up for laparoscopic surgery to remove due to its size. The surgery was this last Friday. He removed the "cyst", my right ovary and both fallopian tubes and my IUD. I still have my uterus and left ovary. I got the pathology results from my Gyno today. My doctor told me that the tumor ruptured during removal and he is referring me to a Gyno Oncologist. I am waiting on staging and treatment plan. It's all a big shock to me as I am only 35 years old. I am the eternal optimist and know I will be cancer free eventually. I know it is a rare cancer of ovary. Glad to find this site to find others experiences.
Hi, I know this post was two years ago, but today my gynecologist told me the cyst that she removed two weeks ago after a total hysterectomy is a GTC and she refers me to a Gyno oncologist. My story is very similar to yours.
Can you tell how are you?
What was your treatment plan?
My experience is somewhat similar. A “cyst” was found but, it turned out to be GCT. I am 34. I had a partial hysterectomy 9.5yrs ago. My surgery was last Tuesday and I was diagnosed yesterday. I see Oncologist Tuesday. My surgery wasn’t staged. Do you think it’s a possibility that they will recommend going back in to stage it?
I wish I would have found this years ago. I went through so much on my own and it would have been nice to be able to talk to someone who understood what it was like. But it's 5 1/2 years later now and I'm fine, and I hope all is well with you too
Hi I am 40, diagnosed with gct, and just had a bilateral oophorectomy and hysterectomy. I'd love to hear from others to help support each other. I've been recommended 6 months of chemo and very scared about what to expect. So far from my readings it seems this is a recurring cancer? Would love to hear from others. Jsong1@gmail.com.
