Post treatment anxiety and not started treatment yet!

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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,

    I'm still pretty early in the post-treatment recovery (11 weeks), but can chime in that I'm eating pretty much what I want these days. About the only thing that wrecked me was a big (heartbreakingly delicious) salad Nicoise, which I realize was perhaps a little ambitious in retrospect (haha), but other than big salads, I can eat fresh fruit, vegetables, and side salads without issue. 

    As for sex, I'm not there yet (way too tender down there). The center where I received treatment did not use dilators during treatment and instead refer their patients to pelvic floor physiotherapy at 12 weeks (I start next week). I'll let you know how that goes.

    Nicola, on this platform, had a 23-day course of radiotherapy, so I'm sure she'll share her experience. 

    Hope this helps--and I'm wishing you all the best. Xx

  • Hi firstly welcome to the forum. Im 7 months post and I eat whatever I want, during treatment I cut green veg out as I got bad wind pain but I eat it now. I didn't use dilators during treatment but have had no problems with them since. I only used the creams provided by my hospital and the ones they recommended, I did get sore and burnt but it was only an issue when walking and it was fine by about 2 weeks post treatment.  Personally I would do what your hospital tells you, mine told me off for using epsom salts and soaking in the bath. Most of us on here had 28 sessions of radiotherapy so any side affects you may get would probably be less.There is a lady on here called  whos journey if i remember was pretty similar to yours. Also a lady called  did a post not to long back about having sex after treatment. 

    We all react and cope differently with the treatment, as to whether you have treatment or go with surveillance its a decision I don't envy.

    Don't know if that's any help or not. Sending hugs. Xx

  • Hi  

    Im 4 months out of treatment now..and yes sex is painful..but im still intimate with my hubby .

    The dilators i bought can be used with no pain and i can used an Anne summers vibrator and don't feel too much uncomfort..

    It's still really early days and I'm hoping to be fully active having sex soon.. 

    Get your hospital feedback on creams.. they will give you some.. it was flamigel from the freeman road hospital in newcastle ..but I also used aveeno and e45..But dont use sudacreme until after all your treatment has finished..

    • Re the diet.. Im Pretty much back to normal eating now.. in fact I'm out tomorrow for a Thai meal for our wedding anniversary..

    Im staying positive tgat the cancer won't return..staying fit and eating the right things.. just taking one day at a time and telling cancer to fck off.. trying to live my life to the fullest 

    Try not to worry too much.. I know it's easier said than done.. this forum is amazing and the support all the wonderful people give really helps you through your journey..

    Im thinking of you.. stay positive and most of all be kind to yourself x 

    Squeak