Preventative surgery, only to discover I have O C.

[Amanda-Jane]

I have been diagnosed with O C after having my ovaries and fallopian tubes removed as a preventative measure due to a raised CA125 ( 9 slowly rose to 40), and a Family history of Breast and Ovarian Cancer.

When I received the results of the operation I was expecting to be told they had found some abnormal cells and that choosing to have the operation was the right decision.

I was not prepared to be told I had O C. So was a big shock.

I have been part of the UK FOCSS Study since 2004 and had my CA125 level checked every 4 months and an annual Ovarian scan.

The levels in my CA125 had been rising since the end of last year, my scans had shown a cyst and small amount of fluid but was put down to normal cycle changes. I had a CT Scan to check for anything else that might be abnormal., the results came back ok.

By now as the UK FOCSS Study was coming to an end I was offered the preventative operation as above. I decided it made sense to have the operation.

I now face another operation, a Hysterectomy, followed by Chemotherapy.

I do not know the Stage yet other than it is likely to be 2 or 3. I do know it is High Grade.

Feeling a bit scared if I am honest but remaining positive.

[Hidden]

Hi Amanda-Jane,

Sorry to read your news - it must have been a terrible shock. On the positive side, whereas the hysterectomy and chemo make sense as preventatives, you are hopefully disease-free from the last op. Thank goodness you were in the study.

Very best wishes,

Isadora

[Amanda-Jane]

Hi Isadora,

I feel very blessed to have been on the study because without it I wouldn't have a clue there was anything going on.

Best wishes,

Amanda

[suzannehadenough]

hi amada..

i am the same age as you and have recently had a tumor removed from my ovary it came back as secondary cancer. so was advised to have hysterectomy. which in itself was daunting but i have to say i recovered from the op well and i feel fine.. 5 weeks on.. i am due to start chemo in a week and i am scared too.. you have every right to be scared but there is a great support network here and i have found it to be so useful in dealing with the emotional side of things..

try and stay positive.. i know how hard that is but we have to try..

wishing you all the best

love suzanne

xxx

[Amanda-Jane in reply to suzannehadenough]

Hi Suzanne,

Thank you for taking the time to share your feelings.

Hope the chemo goes well for you.

Best wishes,

Amanda x

[bosue]

it certainly seems they have caught this really early I know you dont want a hystercomy or chemo but it seems its for the best, to be on the safe side, keep positive, keep us informed. Love Bosue x

[Amanda-Jane in reply to bosue]

Hi Bosue,

Thank you for thoughts.

Regards,

Amanda x

[SarahM]

Amanda-Jane

I have a considerable amount of sympathy for you, hang in there and stay positive. Your story is my story, I was in exactly the same position as you this time last year.

You have every right to be scared and apprehensive. Take good heart, I'm now on day 181 of remission and getting stronger everyday. All my treatment has been at St George's in London and they couldn't have been more brilliant. I was also part of the UK FOCSS scheme, my cancer was discovered in exactly the same way as yours(when I was 45). In the end mine was staged at 2C also high grade.

I came through my second operation just fine and survived the chemo, it was tough but not as bad as I thought it was going to be.

This time last year I never imagined I'd ever feel well again, now here I am about to go off on a 8 mile cycle round Richmond Park!

Good luck with your treatment and the very best wishes.

[Amanda-Jane in reply to SarahM]

Hi Sarah,

Thank you for taking the time to write in response to my comment.

It helps a lot reading other peoples experiences of OC.

You are an inspiration to others, and good luck with the cycling.

Regards,

Amanda x

[BuntyB]

I was in a similar scenario in March of this year when I had to have a hysteroscopy for what turned out to be a benign polyp. Before my op, an ultrasound had showed that I had multiple ovarian cysts which looked suspicious (I knew I had cysts for quite a long time) and my surgeon urged me, in view of my age (60) and the fact that they were no longer of any use, to have my ovaries removed. I reluctantly took her advice and am glad I did because when the histology came back, I had high grade Stage IIC ovarian cancer. I was gobsmacked, as was my surgeon as she hadn't seen any sign of malignancy at operation.

I was then referred to the Gynae Oncologists and have had 4 cycles of chemo (3 were Carboplatin & Taxol and 1 just Caroboplatin due to serious numbness problems with the Taxol) and am now awaiting an op for debulking of nodules in the omentum +/- hysterectomy depending on the findings at operation (27th of this month). In view of the fact that I had a few nodules in the omentum, this upgraded my disease to Stage III and my surgeon will not give me any idea of how things stand until after the op, although my Oncologist has said there was excellent response after only 3 courses of chemo. The plan after surgery is for 2 more sessions of chemo (just Carboplatin).

I am terrified about having the operation and dreading what news my surgeon will give me when I wake up from it. I didnt want chemo but realised I had no choice if I wanted to live and the same with the surgery. Chemo is no walk in the park for me personally but as I said, it has to be done. It has helped to read all the real life stories on this site with such inspirational people, many of whom seem to have defied the experts and are living beyond their "life expectancy".

I wish you the very best and hope you manage to cope with whatever the doctors throw at you. Keep your chin up.

[Amanda-Jane in reply to BuntyB]

Hi Bunty,

Thank you for taking the time to share your experiences with me.

Wishing you the very best with your operation and treatment.

Regards,

Amanda x

[EllenMc in reply to BuntyB]

Hi Bunty, i know exactly how you feel, i had a hysterectomy and a lymph node removed as it was swollen and i was terrified waiting for my results in hospital after my op. Thank God, mine was clear and the relief was incredible, I pray that yours is the same. Same advice to you as i give to everyone, take iron, vitamin c and ginger root. Take iron all the way through your chemo sessions, i did, 250mg. I'm 5 years cancer free from STage 3b, so something worked, i had cancer in both ovaries with spots on my bladder and bowel and I'm still here. Take care and always know that this forum is here with people willing to listen and who totally understand what you are going through. Ellen xx

[EllenMc]

Hi, please take 250mg of iron during your chemo and also take 1000mg of ginger root. I did a lot of my own research when i was diagnosed with ovarian cancer, yesterday it was 5 yrs since my last chemo session and hopefully after my final blood test in December, i should be given the all clear. My OC was stage 3b! I was initially told that i couldn't take anything during my chemo, so i had a meeting with my oncologist and told him i intended to take iron and vitamin c and he had no problem with that. The worst thing you can be during chemotherapy is anaemic this is when people miss sessions, take the 250mg of iron all the time. Good luck and keep me informed, Ellen xxxx