Hi all. I am new here and thought I would see if there was someone out there who has similar history to me.
In August 2017 I was diagnosed with Endometrial cancer. I had a full hysterectomy in September 17 and the final result was; Stage 1a Grade 3. I was also told that that had removed and tested 'everything' including Overies and Lymph Nodes - all clear of cancer. 27 days of Radiotherapy followed which I completed in December 17.
I felt I had 'sailed' through this treatment and felt fairly well (had a great Christmas and New Year). Towards the end of my Radiotherapy I began to get a few 'symptoms ' (indigestion, constipation and/or diarrhoea which I reported to my GP and Oncology team.
Two follow up appointments at Mount Vernon Cancer Centre followed. In May 2018 the doctor suggested a CT scan as symptoms persisted.
Long and short of this was the result showed I have Stage 4 cancer of the Omentum, inoperable and incurable, which apparently is quite common following Ovarian Cancer .... But hold on, I didn't have OC !!!
Now I am having chemo (Taxol/Carbo). Treatment every 3 weeks, cocktail 4 followed by a CT scan last week. Results on 15th November when they will decide whether I continue with another 2 treatments or not.
My CA125 bloods cancer markers started at 587 and at last test, after 3 treatments, reduced to 16 which is encouraging but not doing cartwheels yet, ha.
Sorry to rant on a bit but finding this very therapeutic .
Would be interested to hear if anyone has a similar tale to tell.
Thank you in advance.
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PooBear1
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Welcome PooBear1. Well it would appear from the marker drop that the treatment is working and hopefully your scan will confirm this, although you may not want to do cartwheels, the numbers are important when going through chemo so you are now within normal range. All I can say is that incurable also means manageable so don't lose faith yet. I was diagnosed and surgery in 2006 and I am incurable but managed very well so far. Had this new radiotherapy this summer Stereotactic Radiotherapy and my last scan was stable so I am happy. I wish you the very best
I am defiant and have not lost faith. My son is getting married in April so I am definitely fighting this all the way. Your reply means a lot to me. I will decide what to do next after I get all my results in a couple of weeks.
Hi...what a horrible shock for you! I think that the medics do have a difficult time of it trying to decipher what is on the scan. Recently a ‘more experienced radiographer ‘ looked at my latest scan and pronounced my disease ‘stable ‘. I was about to start chemo again!
Not that this really helps you.
I agree with Suzuki....don’t assume that you have no options...and I suggest one of those might be to get a second opinion from a specialist centre like The Marsden xx
Your reply means a lot to me. Having 2 cancer diagnoses in less than a year was indeed a shock but I have faith in my consultant. She is wonderfully encouraging and one of the best in her field (Dr Marcia Hall at the Mount Vernon Cancer Centre)
Roll on 15th! Meanwhile, keep on keeping on with positivity - it's they only way to beat this alien within me.
Hi Poobear , This is so hard to take in I know but as you already know Dr Hall is fantastic and will have all sorts of plans to deal with this as chronic disease . XxJuliaxx
Hi PooBear. My experience is different from yours but just wanted to emphasize that a CA125 of 16 is a v. good result. Good luck with it all. I wish you all you wish yourself. Pauline. P.S. Pooh bear books were my favourite when I was a child. I still have them!
I can’t help but wonder at your different diagnosis.
I believe that Ovarian Cancer is a cancer of the Epithelial cells and is often described that way: ie Cancer of the Epithelial cells of Ovarian or Fallopian tubes in origin.
I believe that most Oncologists now believe that most Ovarian cancers originate in the Fallopian tubes. These tubes are not attached to the ovaries, but hover above and drop their cancer cells into the ovaries, often spilling and seeding throughout the abdomen, over the omentum and onto the peritoneal wall.
Most of us have had our Omentums removed during the debulking surgery, before or halfway through Chemo.
The Chemo regime you are on, Carbo/Taxol, is state of the art and will probably be successful, as you can already see from your cancer marker going so far down, so congratulations.
I still would ask 2 things of your Oncologist. Can you have a surgery to remove your Omentum? And any residual disease?
Can you have the BRCA mutation genetic test to inform future treatment options?
So, sorry to barrage you with all this info, but I worry that as caring as your Oncologist sounds, she is not giving you all the information you need.
It is indeed a terrible shock to be told you have cancer. I was first diagnosed with polymyalgia but all the time it was cancer causing inflammation- by the time I had the correct diagnosis it was stage 3c.
So sorry to here your news ,like yourself my cancer came back 2.5 years in my omentum which I then got removed as it was not as advanced as yours . I am now celebrating my 40th next year as well as finally 5 years cancer free . I know it will feel like a life sentence but cancer can now be managed or maintained. It’s still crap but focus on what you can still do not what you can’t . Enjoy each day and live in the moment. I found not worrying about what, ifs, buts and maybes and enjoying each new day. The simple things are what makes us happy .
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