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.
Jon (UK)
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Jonthreep
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Every case is different, and response is different too. Most oncologists seem to like to hedge their bets, mine never answers a question straight! If your Mum is feeling more comfortable be confident that something good is happening. Take each day as it comes and make the most of it. Stay positive. A port line would make no difference as the drugs are pumped throughout the body, not just to the site of the cancer.
Thanks so much for your reply. What you say about a port line making no difference is something Ive heard many people say. My concern was that there may not be as much blood flowing to the tumour because its tucked in with the bowels, and chemo is only taken where there is blood. Thanks again.
Hi Jon, has your mum been assigned a specialist gynae nurse? In my area I've got 2 Macmillan nurses who are always happy to talk things through. In my experience oncologists don't always have much time for you but the nurse will know about your mum's case and can talk through some of the detail. Otherwise, there are the great Ovacome nurses, they are experts. You can phone the office during office hours or I'm sure they will reply to your message. Hope all goes well for your mum. Rachel
No, she hasnt yet. Ive spoken to her about it, but she doesnt want to be rushed. I think she is afraid what they will say. Ive spoken to Macmillan nurses on the phone, myself. And theyve been very helpful, and have been feeding back the positive things to my mum.
I have recently completed similar treatment for stage 3c. I had my surgery after three ruonds. I would think that if her symptoms are better then the chemo is likely to be having a positive effect. I had a scan which showed that some of the smaller areas had shrunk after three rounds of chemo but importantly the bigger tumours like the one your mum has on her bowel can change in consistency with the chemo rather than just shrink. This means the chemo is having an effect in breaking it down, which in turn means surgery is easier ie the tumour is not so stuck to other parts.
I asked about a port but if the cannula goes in ok when she has her chemo it's not seen as necessary as it's a possible site for infection etc.
Thankyou so much, thats really interesting what you say about tumours changing in consistency with chemo rather than just shrinking straight away. I'll pass it on. Many thanks, and the very best of luck to you
I agree with all the comments so far - especially the one about speaking to the specialist gynae nurse. Mine is great and we are able to make an appiintment to see her when we want to discuss what is happening. I have recently completed the 3 rounds chemo, surgery, 3 rounds chemo rountine. The surgery was not a great success as there were too many tumours to cut out with out seriously affcecting quality of life. But the chemo did affect the tumours and although the scans were inconclusive about how much they had changed I have been very well since the treatment finished last September. OK, the future is a bit uncertain - no-one knows when it will become active again but meanwhile I am having a great time and living rather than worrying. i am a few years older than your Mum but I did go throgh all this when I was 56 and then had a very active 13 years before it came back. So lots of luck to her - and to you.
I am older than your mother and was diagnosed stage 3c in Sept 2009. My daughter was very worried too. I have been lucky as I responded well to the Chemo and op (after 3rd chemo) though I did get some post op abscesses which made life a little fraught. I find my Macmillan nurse a real support and also the cancer care unit at my local hospital. I know my cancer will return but at present I am well so I am looking on it as a positive experience. At 70 I should not put things off anyway but now I am determined not to put anything off. I am packing in as much life and experience as i can while I can.
To help me when I go for my bi monthly reviews I keep a diary in which I note anything that concerns me so I can ask about it. The oncologist is great but I also consult the Macmillan nurses when I can and I have found this site most helpful.
One side effect of the chemo has been the effect of the steroids which have pushed me over into diabetes. I am therefore watching what I eat (low GI) and exercising as much as I can (aqua aerobics and pilates as well as the recumbent bike and walking on the treadmill) I do just what I can without exhausting myself and I am fitter and healthier than my sister who is 6 years younger and does not have cancer.
I find being positive is what helps most! I wish your mum all the best and meanwhile make the most of every single day!
One thing I did find helped was a book called "Cancer giggles" which is a printed version of a blog - I laughed so much it made me forget my own concerns!
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