Hope everyone is doing ok.
i finished chemo radiotherapy on 24 April and following my first MRI I am now showing NED. I just need a biopsy now and then stoma can be reversed.
Does anyone know what would happen IF the biopsy shows up anything? I was so happy with my results I forgot to ask the consultant.
Also, when did the menopause kick in for everyone?
Thank you x
I’m not quite sure why some people are offered biopsy’s/EUA’s following treatment & others aren’t to be quite honest as recently I’ve noticed a few people mention that have had NED results from post treatment scans they’re going on to have this. I had neither of these offered. In your case I suppose it’s so they can be 100% sure there’s no residual cells before they reverse your stoma.
As difficult as it is try & not dwell on the ‘what ifs’ try & focus on the great result you had from the treatment & getting back to living your life again. I can also completely sympathise with the joy of getting the NED result & forgetting to ask other questions as I did exactly the same & sat at home afterwards thinking of all the questions I’d planned on asking!
Regarding the menopause, I was 52 almost 53 when I had my diagnosis & I think I was in early stage menopause anyway but apart from the odd ‘tropical moment‘ during the daytime the radiotherapy seems to have brought all of my other symptoms to an abrupt end! I also have a mirena coil fitted (my oncologist said there was no need to get it removed before treatment but I kind of wish I had!) so I wouldn’t know if I was still having a period or not! it has to be removed either this year or next & I’m not looking forward to that one!
Hope this helps a little & hopefully others will be along soon to give their prospective. Don’t forget you’ve been through a lot & you’re doing great.
Thank you so much for your reply and your positivity, you are so right the what ifs are not helpful and take away the happy thoughts so I will certainly try to focus on the good result.
I agree I think the reason for biopsy is probably more to do with the stoma. The tumour was 13-15cm so they had to take the pressure off with the stoma. It was the largest size and caught just before it was ready to spread so this proves how effective this treatment is.
it is strange as others also have a PET scan but I am told I won’t need this.
Your supportive is much appreciated and it’s great to hear from someone who has been out the other side xxx
Ah you’re welcome Matilda24, that’s exactly what we’re here for, to offer support & share experiences as when you have a cancer diagnosis, especially a relatively rare kind like ours, it can be a pretty lonely place. Also we never know if the things we’re experiencing post treatment are to be expected or not do we? & speaking to people a little further down the line can sometimes relieve the stress of these hiccups, having said that I always run these things by my oncologist & surgeon at my appointments too just to let them know what’s been going on & to get their reassurance that it’s to be expected.
I’ve never had a PET scan either, I had CT & MRI diagnostic scans, again CT & MRI for treatment planning, CT & MRI post treatment & now CT & MRI annual surveillance scans, I’ve never been offered anything else. You're right in most cases this treatment is very effective, there are a few members, like yourself, that have been diagnosed with pretty large tumours, stage 3-4, & have had very successful outcomes. Do you have a date yet for your biopsy?
My biopsy is 26 August and I understand this is to take a margin of cells from where the tumour was and to asses if there had been any damage that could prevent the reversal xxx
That’s great news that you have a date now & not too long to wait, hopefully all’s good & your reversal will be the next move. Got everything crossed for you, keep us updated.
Thank you Nicola. Much appreciated x
After struggling to get back on to the new site I am finally back on today! I have just seen from another thread that your results were good Nicola, congratulations, it must be a big relief and another milestone crossed! Matilda24, I think that I had already started menopause before treatment and had a few hot flushes post- treatment but that was it. As I am on the mini pill I don't have periods so can't tell for sure. I don't want to stop taking it at the moment as don't want to go back to having periods if I haven't been through the menopause. My Consultant told me there was an 80-85% chance of the radiotherapy putting me through menopause and that it would happen relatively soon after starting treatment as my ovaries would be switched off so I would think that you should have started with symptoms by now. Everyone's post-care treatment seems to be a bit different. As I was having a few symptoms, eg bleeding on/off and they wanted to ensure the scar tissue they were feeling during a DRE was just scar tissue I had an EUA with a biopsy. It came back clear! Just waiting now for my 1 year CT scan results... x
Thank you so much & yes another milestone crossed, now just over 2 years post treatment & NED hoping the MRI results come back soon then I’ll relax properly for a while again.
That’s brilliant news about your EUA & biopsy results, congratulations, it must have been a big relief. The intermittent bleeding seems to be a regular occurrence for many of us following this treatment but it’s extra reassurance for you that it’s been thoroughly checked out. Mine has just gradually got less regular over time, I think it’s only happened possibly twice in the last 6 months & is usually in conjunction with toilet issues! I’ve also found it used to last to some degree maybe a week & I’d be quite sore internally over that period of time but this last time it only lasted 2 days so improving all the time. I’m sure your scan results will be good too but you don’t relax until it’s there in black & white do you?
Just to say I hope your biopsy went ok today.
Biopsy all went well should get results in 7-10 days, consultant was confident they will be negative but just needs to be sure before he reverses the Stoma. In the unlikely event that they are not clear the only option is surgery but he thinks that will be unlikely. so fingers x can get the Stoma reversed in the next few weeks. thank you for checking in on me and I hope you are good :-)
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