I'm so fed up and disappointed - is anyone else in the same situation?

[BuntyB]

I finished 7 cycles of Carbo/Taxol on 7th December. I had my ovaries removed initially at the beginning of April 2011 due to multiple "nasty" cysts as an incidental finding when presenting with a polyp in the womb and the histology came back as a surprise to my surgeon and myself as Stage IIC OC. A CT scan then showed a couple of small nodules in the omentum and I was re-staged as Stage III.

Went in for debulking surgery end of September but the surgeon could find no visible disease and therefore did nothing and discharged me and everything was hopeful and happy. I then finished my last 3 course of chemo.

I had my end of treatment CT at the end of January this year and a CA125 had gone back up from 9 to 30 (it was at 30 just before I had my ovaries removed) but then went down each time I had chemo to 9 eventually.

I have now been told that the nodules on the omentum have returned and are bigger and there is some thickening of the bowel seen, but they are not sure what it is. How can this be after no disease was seen at surgery and a further 3 chemos? I am being referred for an urgent colonoscopy - MORE WORRY.

The oncologists have discussed my case with the gynae surgeons at their MDT meeting yesterday and they say that surgery would not be beneficial at this time, just after finishing chemo. What does that mean? I asked what's next and they said probably more chemo after I have had a break but were very evasive about prognosis and length of chemo etc. I have an appointment next Monday to discuss all this with them then but now I am at my wits end worrying all the time. Is that it, am I going to die now, and when exactly?

I only retired last September, aged 60 and for the first year of my retirement have been having chemo or not feeling too well following it. I feel so cheated of my retirement and life in general, especially as it means we won't be able to do all the things we planned to do and that my husband will go on without me. I don't know how I will bear it.

Help please - any advice or useful comments please? Many thanks.

Barbara

[Hidden]

Hi Barbara, I know just what you mean when you say you feel cheated of your retirement...I feel just the same.

I'm sure they are doing all they can for you as quickly as they can, and as to further surgery, that is not often the way forward. My dad's oncologist said to open you up when there is a spread is like spreading it in the wind.... best not done. Chemo is normally the way forward. I started my journey in May 2007, while still working with my husband, but already had our motorhome ready for wandering when we retired! (Glad we got it early).

I had my op, then 6 chemos. then a year when I never even thought about it coming back. Whallop - it has been back ever since. Just at this moment it seems to have taken a break (after 2 years of chemo) and we are off in the motorhome tomorrow, and making the most of our extra time. I know it is hard to do, but trying to stay positive, and making the most of each day is the best way forward at the moment. Give your self a target.. I've had my 40th WA and my 60th birthday we never thought I'd have, and my pension arrives next month, and I shall see my new grandaughter in August (mind you she'll be 12 month old, but the one thing I can't do is fly, and she lives in LA).

Do what you want when you want to do it - it's your time now.

Stay strong

Love n hugs

Viv

[BusyLizzie]

Hi Barbara,

I am 45 and face many of the issues you mention. I can only say that you are not alone in feeling fed up and disappointed after surgery and chemo. Not everybody gets a remission. If you need a second opinion before moving forward, please seek one. Ovacome can provide names of people close to you, or in London and Leeds if you want to go to the top. Of course nobody can say when we are going to die exactly, but I believe the trick is to do things while you are relatively healthy, make sure when you are offered further treatment you have an idea if there is an alternative you think is better and to use all the support you have available to you to lighten the load. I am remaining realistic about my survival prospects beyond a few months, but I am not giving up hope of finding something to keep the monster at bay for a while and nor should you.

Love Lizzie

X

[Hidden]

I would ask for a second opinion. Was your surgery done by an oncology qualified gynaecologist? One of the objectives of debulking surgery is to obtain samples of e.g. lymph nodes for biopsy. Sometimes microscopic growths that are invisible to the eye are found.

But all is not lost. Many of us, including me, have had a rocky road on the way to remission involving second opinions and sometimes travelling for treatment. Because ovarian cancer is less common than for example breast cancer I think it is wise to consider going to a major cancer centre such as Leeds which has a good reputation for treating OC.

The difference between the opinions I got was very significant and surprising.

Everyone feels shock and fear. It is important to try to relax. Your GP may be able to refer you for counselling or relaxation classes, or contact MacMillan. Also, please contact the Ovacome nurses, who are wise and knowledgeable on 0845 371 0554. I hope this helps.

[Heffmeister]

I would seek a second opinion too- maybe the Royal Marsden??

Am I right in thinking you haven't had a hysterectomy and you still have your omentum? These are usually removed as a matter of course with a diagnosis of OVCA. The omentum is often the cause of fuelling the spread of cancer. Do you know what type of tumors you had and what chemo you have been receiving? Different tumors respond better to different chemo drugs sometimes. I just had my disease progress while I did 6 doses of chemo. I've now started straight away on a different regime. I am only 34 and battling this while my girls are 6 and 4. I feel cheated too and completely fed up- that's normal. It doesn't mean you still can't enjoy life. You may have cancer but don't let cancer have you.