Hi everyone
i hope you are all doing well. I was diagnosed a few weeks ago with AC after a polyp was removed which was believed to be benign but turned out to be a carcinoma. The actual size of the tumour was about 1.9mm, so pretty small, but still cancer.
As the margins around the removed polyp are not acceptable, I have been given the option of either surveillance or chemoradio, but for 23 days instead of 28, with a slightly reduced dose of chemo and radio. i am, like all of you, grateful that the cancer has been discovered and removed but, after seeing the oncologist today, I am very worried about the potential life changing after effects of the treatment. He was extremely keen to spell these out in great depth and I am now very worried about not just the treatment but also the possible problems that may come down the line months, or even years later.
I guess the things that worry me the most are that my diet may have to permanently change. I am currently a real vegetable and fruit girl, not really interested in white bread and bland food. From what he was saying, it is quite likely that vastly reduced amounts of fibre may be a necessity to prevent disruptive bowel movements. Has anyone found this to be true or can you 'train' you body back into normal eating? I am a little confused as to why the radiotherapy would cause such a shift in bowel habits so any advice on this would be gratefully received.
Secondly, and I notice that Squeak has posted about this recently, the vaginal stenosis seems to be almost inevitable and I am worried about losing the ability to be intimate completely. I know that they recommend using vaginal dilators to try and mitigate against this, but I wonder if this actually works. He actually said that it is now recommended to start using them during treatment, right from the beginning. Judging from the side effects I have read about, I wonder if this would even be possible! I can feel myself already feeling a little queasy at the prospect.
The chemo side effects sound pretty awful, but I am trying not to focus on those now.
Finally, well not finally, but finally for now, I mentioned the StrataXRT to him that has been recommended by a few people on this forum, but he quickly said that the hospital uses its own range of creams etc. I think from his reaction he wouldn't be happy for me to use it. Would I need the hospitals permission or should I just accept that I will have to go along with their treatment protocols and forget about it. I am just looking to protect my skin in every way possible so any suggestions would be appreciated.
With regards to surveillance, it seems that this is quite invasive and, although it would prevent all of the above, I wonder if eventually the cancer would return and I would have to go down the same treatment pathway anyway.
This is not turning into the best summer ever, despite the weather! Life does throw us a load of s**t sometimes doesn't it.
Many thanks for any replies and hope you are all well and that anyone who is currently going through, or recovering from treatment is managing to remain optimistic.
Jo x
Hi Jo (Dahlia68 ),
Your story is remarkably like my own.
I was diagnosed T1N0M0 in February 2018 with a local resection offered to me as first line of treatment for a tumour a little under 2CFS in circumference & around 2mm deep. I went ahead with the surgery. Surgery was successful in removing the tumour with clear margins but a tiny area was only clear by 1mm which lead me onto a meeting with oncology & chemoradiotherapy. I was offered into the PLATO clinical trial which consisted of 23 days of treatment with a reduced dose of radiotherapy so very much like what you’ve been offered.
Side effects - I had little to no side effects at all from the chemo, my hair was a little frazzled by the end of treatment but that was probably a combination of both therapies. Radiotherapy, I got the usual skin reaction that was akin to sunburn, I got through the whole 23 days without many issues, I was fatigued but nothing a nap on an afternoon & early nights didn’t sort out & I had a bout of radiation cystitis which although unpleasant soon passed. I didn’t suffer any diarrhoea during or after treatment, in fact I swung completely the opposite way & had to take stool softeners throughout. My appetite was pretty good throughout treatment & I ate veggies every day (I’m not much of a fruit eater). My side effects peaked around day 11 post treatment & my skin broke down in a couple of small areas but with the cream provided & a little time things healed surprisingly quickly.
Changes to diet - I’m able to eat mostly what I could beforehand, although sugar & coffee seem to cause me bloating & awful gas these days & I’ve never done particularly well with bread but I don’t have an issue with veggies or fruit at all.
I remember having all of the worries you’re expressing when my colorectal surgeon spoke to me about my results & referring me on to oncology but 7 years down the line I’m eternally grateful that he did. This treatment isn’t what any of us would choose but it handed me my life back & I know we’re all different but my nerves wouldn’t have handled the ‘wait & watch’ approach.
Just to add I’m going out for a catch up with a few girlfriends this evening for a curry knowing I’ll have no issues after eating it!
Please just ask if you’ve any questions.
Nicola
