I've been reading the stories on this site every day since my mum (64) was diagnosed stage 3a in early October 2010.
A bit about my mums treatment:
She was that the plan would be 6 rounds of taxol/carbo followed by (hopefully) surgery then 2 more rounds of carbo. Before she was diagnosed she had complained of pain in her right lower side (stomach) for over a year. After 2 rounds of chemo the pain went away, and although she has been breathless, with muscular aching and sickness whilst having treatment; in the 5/6 days before her next round of chemo, she says she feels better than she has in ages.
With that in mind, her oncologist said that hopefully that would mean that the treatment was working well and she might have her operation brought forward before her final 3 rounds of chemo.
However, after the CT results yesterday, we were deeply worried and disappointed. The scan shows no shrinking in her tumour. The oncologist tried (I think) to put a positive spin on it by saying that in the original scan in was hard to define the exact size of the mass and so in comparison it is hard to see if there is any change.
On the positive side, he said that "not many, 3/4" aortic lymph nodes, which were "affected", (one was originally 3.5 cm) havenow come right down in size. He said he would expect them to return to normal after the next 3 treatments. He went on to say that the response of these affected lymph nodes was "as good an indication as any that the chemo is having a good effect".
I asked about the CA125 but was told that this is a poor marker for my mum because it was only 45 at the time of diagnosis.
We shuffled out of the consultation being told that my mum is still on track for the original plan to have surgery after 6 rounds, so we should still be encouraged. Everything else on the scan was clear.
I have so many questionsand concerns I don't know where to start. The first would be; how quickly should we expect the tumour to shrink, if at all? How much will they need it to shrink before they agree to operate? Should my mum ask about having a port fitted? If so, will that help get chemo closer to the tumour (which is stuck to her bowel)?
I've asked my mums oncologist some of these questions before, but he has a way of answering where I feel momentarily reassured but still don't really have an answer to my question.
Thanks for reading this long ramble! Any thoughts, concerns or advice would be greatly appreciated.
You know, Jon, I can't answer your question about when the tumor should shrink. I think the fact that your oncologist says everything continues on the original track is a very good sign. She is only half way through the original planned 6 rounds of chemo....the reduction of the lymph nodes is a very good sign.
Your sense of being "momentarily reassured" is what we all feel, I think, after walking away from a consult. It would be so nice if we could simply "walk away" from the diagnosis....but ....it follows us around all the time. It is so scary and nobody really knows what lies ahead.
So far as a port goes.....I am 5 years out from chemo and I still have my port.....nobody is taking that thing out....I am so glad I got this thing put in. I can't imagine doing chemo without it.
The only thing I can say is "you are not alone".....I know it feels like it sometimes...but we are all here. Please do come back whenever you want to talk of vent.
Please give our best to your mom and know we are here.
I sent you a message a couple of months back offering to help if you are in the UK. I am also in the UK and have been going through this with my wife for the last couple of years.
I guess in answer to the main theme of your questions. Oncologists are practiced in giving positive answers while leaving enough scope for any outcome to be possible. The reason is just that any outcome is possible. It's hard to be definitive in these things so the doctors tend to have a way of sitting on the fence while offering hope.
My wife was also stage 3a and cannot use CA125 as a marker for the same reasons as your mum. If you want to, send me a message and we can speak locally.
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