Granulosa Cell Tumour!!!

[Emz856]

Hi,

I was diagnosed with granulosa cell tumor in July 2011, they originally thought it was just a cyst as my CA125 was within normal limits (later found out it always will be as the Inhibin is the on that will change). The tumour burst inside me when removed. Then in Oct 2011 I had my right ovary and Fallopian tube removed. As the histology came back that it was cancerous.

I was changed to a gynae/oncologist surgeon. Who monitored me, and I had an USS every 3 months along with blood. She said that it shouldn't return til I was much older and it was the same as what I had researched. She saved my left ovary for future children as I was 25. Thankfully I was able to have a beautiful boy before it returned.

In sept 2014 at my routine USS a cyst was noted on my ovary. So my ovary was removed and Fallopian tube. Why exploring my surgeon found another mass but due to position she had to close me and leave it in so she could consent for other procedures she may have to do.

So feb 2015 she went back in and removed 3 masses and some speckles off my large bowel and bladder. As well as removing my womb and cervix.

They have sent everything off again and attending an appt on 3rd March, bone scan on 11th March and an appt with the integrated medicine hospital in May. As my surgeon said I can't take HRT as it feeds the cancer!!!

I have had 5 surgeries in the last 3 1/2 years and is really getting to me. My surgeon said she personally has never come across where it has come back so quickly.

I have never spoken to anyone else who has had GCT and would love to talk about people's experiences. I am very pleased to find this site. And hope to hear from people soon.

[gregc]

EMZ,

This may seem odd having a male answer you. Unfortunately I have had 18 years experience with this cancer as my wife has had it this long. I have been actively involved in all her surgeries and treatments. I have researched endlessly online and have even been in contact with doctors and scientist in other countries looking for a cure for GCT. First, you need to find a doctor with some experience with GCT. One of the biggest issues is most doctors have never seen this cancer, some do not even consider it cancer (18 years ago we were told it wasn't cancer). My wife's GCT is estrogen receptive. This hormone feeds her cancer. Your case is very much like ours. Some reproductive parts were removed at first so we could still have a child. But after our son was born our doctor strongly suggested a hysterectomy' which she did. This was to greatly reduce estrogen production. She was also put on estrogen reduction medicines. You need to be very very aggressive in your vigilance of this cancer. She gets her blood test done more often than the doctor suggested. It allows us to find and closely monitor the growth in its early stages. Yes it is slow moving but it is a cancer and it does spread. My wife has had about 6 or 7 surgeries over the years. Her medicines have been changed frequently as your body starts to not react to them. She has also had cyberknife surgery which was very successful. Da vinci robotic surgery was recently used to get to some growths that they couldn't get to using regular surgery.

You need to look into all of your options. Never take one doctors opinion! We trust our oncologist completely as she has done well by my wife for 18 years now. But we still research what she says, and sometimes get 2nd opinions. Our doctor has no issues with us doing this.

This cancer always come back. Chemo does not work well on it. Anti estrogen's just slow it down. My wife and I feel that every 2 years or so she will need surgery. We accept that its just the way it is. She is doing well, is active and enjoying life.

There is finally research being done specific to GCT. Its being done all over the world and there is hope on the horizon. As a rare cancer for many years there wasn't any research. Not many women have it so there wasn't any money in it for the pharmaceutical companies. It wasn't "profitable"

We wish you all the luck and prayers to beat this.

Please feel free to ask any questions.

GregC

[Emz856 in reply to gregc]

Hi Gregc,

I value anyone messaging me back regarding this subject. I have lots of questions so if it's okay I will message you back and you can answer whatever ones you want.

My I first ask when was your wife first diagnosed and what age she was? And also where does your wife receive treatment?

My consultant has come across this but only a few and it hasn't come back as quickly with her other patients.

Mine is also oestrogen receptive, but I will ask my consultant regarding the

oestrogen reduction medicine.

How often does your wife have bloods done and what other monitoring does she have?

Sorry to bombard you with all the questions. And thank you so much for replying. I will start up again my research and maybe get some 2nd opinions as my consultant is fab.

All the best to you and your family!!

Emz

[gregc in reply to Emz856]

My wife was in her late 30's (56 now) when first diagnosed. She was rushed in for abdominal pain and it turned out to be a cyst on her ovary. The doctor told us not to worry as it wasn't cancer. We found out months later that it was GCT. Very long story there.

She had her last surgery in September 2014 to remove a small growth on her liver. It was GCT as suspected. Everything else looked clean. She goes every 3 months for blood work. As usual after the surgery the numbers are extremely low. They have gone up over the years roughly 6 months or so after surgery. We expect it to do so. This is an aggressive but very slow moving cancer. It rarely is "cured". We wait until the numbers go up a little bit before we start to look where it is. We have ALWAYS opted to have it taken out when very small. Even when surgeons have said it's in a place where it can't do any harm while small. My wife wants it out. My wife pushes for an early scan of her whole body sometimes against the doctors advice. They worry about to much radiation from the scans, my wife worries more about the cancer. So far my wife has been on target. She is very aggressive about her cancer, she waits for no one.

Being your cancer is also estrogen sensitive. Here is some new info we recently found out about. LOL , this is a difficult question. Are you overweight? I don't mean by 5 or 6 pounds. I mean very overweight. The fat in your body produces estrogen( we never knew that) Even after a hysterectomy and using estrogen reduction drugs (which cause weight gain)and being very careful about any food or supplement that increases estrogen, something was feeding her cancer. My wife is going to have weight reduction surgery next month. Many of our doctors believe this may help in her fight against GCT. We are all excited by this. We know Chemo does not work. Or works in a very small percentage. It should be a last resort.

We are very fortunate to live very near NY City. We have been to Sloan Kettering for advise. Our surgeon worked there early in her years and is at the forefront of "new" surgeries and treatments. She is well know nationally and is truly one of the most caring and down to earth doctors we have ever met.

Ask any questions you would like. We hope our experiences can help others. We are open to sharing them.

[HIndia in reply to gregc]

I realise its two years since your post. Nevertheless, seeing it, I feel more hopeful regarding my own case. Was found to have a 15cm tumour 2 years ago. Surgical removal, biopsy showed granulosa cell tumour. In 4 months had another growth at same location, 10cm. Chemo, follwed by surgery. Chemo side effects were hell. A year down, still have numbness in my fingers and toes; coming down very slowly. At the same time, I have another growth at same location. 4cm. Cyberknife treatment suggested. Was down in dumps till I saw your post. I feel more optimistic now. Thanks !

HIndia

[TWCain]

Hi EMZ, I have the same condition and was just recently told this, like last week and unfortunately can be of no help to you as I really no nothing much at this time as I am just beginning on this voyage. I just wanted you to know I will be thinking of you and wishing you the best. All of the people here are very supportive and have a great deal of perspectives to consider. It's great!

[Dolcie]

Hi, I have GCT have had it now diagnosed with the right Cancer since 2011 ( long story as was misdiagnosed since 2005) I had surgery last in 2013 and after 3 months had reoccurred . I am being monitored regularly and as it is not a size to be worried about yet but I know I have another op looming . What hospital are u under .

[Emz856]

Hi Dolci,

I'm under the UCLH, it's like my second home lately. They are good in the clinic's and usually the ward. Just this admission the nurses were awful well the majority of the time.

It's nice to hear from people who are going through similar experiences.

Is your consultant good?

Emz

[thesilent1]

Hi, I'm afraid I don't have this tyupoe of ovarian cancer but I know that others on the site do and they will respond to you. I just wanted to welcome you. Ann xo

[Hydrangea13]

There is a facebook page for women with GCT that You might be interested in joining. There is also a website that has lots of good information-- GCTRF.org. This past September there was a convention of women with GCT and their families in Denver, CO that was very helpful. It was great to meet approximately 30 other women that had GCT. I was diagnosed in July 2013 at age 57. I have not had any recurrences. I see the gyn-onc every 6 months for an exam and inhibin B. I hope that you find this info helpful. Take care!

[Aemi]

So sorry to hear your story Emz. I have been diagnosed late last year and operated on November taking ovaries omentum some lymph nodes and part of my bowel. They told me it was ok and they had removed the growths but referred me on to another unit and I'm now having more tests to see if the cancer has spread. My hair has started coming out in handfuls even though I'm not yet on medication of any kind. I guess it's the stress. Mostly I'm just taking each day as it comes and didn't think I was so stressed but maybe it's a different sort. I'm 63 so not a spring chic like you. Hope they get us sorted☺️

[Hidden]

February 2014 I had surgery for a 9cm x6cm "cyst" which turned out to be GCT. I also had a complete hysterectomy and removal of omentum. I'm now monitored for inhibin A and B every six months. As someone else has said, the Facebook page is the very best source of support and information for this type of cancer. As it's a rare cancer it's great to chat to others in the same boat. The ladies on there are also a wealth of knowledge and are extremely supportive.

[Di16]

Hi, Sorry for this late reply. I have been on holiday, and have only just read your post. I also have GCT, first diagnosed in 2008. Like many ladies with it, I was told it was not likely to recur for 20 years. It recurred after 2 years. I had further tumours removed in 2010, 2012 and 2013. Three months after the last op, a scan showed more tumours. The gynae onc surgeon said it was recurring too quickly to keep operating, so I was referred to medical oncologists. As my tumours are hormone responsive, I tried hormone reducing pills, but 2 tumours were still growing, so they had to stop them. I have recently finished my second course of chemo. As GCTs don't respond brilliantly to chemo, response has been limited, but there has been some shrinkage.

I also, 4 months after my last cancer surgery, had another op to repair a strangulated incisional hernia and remove a section of trapped small bowel. I felt really fed up and weepy for a while having had ops so close together, so I can understand your experience getting to you.

Di