Radiotherapy delay

Hi I was diagnosed 25th Jan and had lumpectomy 7th Feb. I've been told I don't need an oncotype test as they say I have a low risk of recurrance but I'm struggling to accept not having the test but they seem to be standing firm on that. I was told radiotherapy would be 2 to 3 months after surgery. I had a telephone appointment yesterday with an oncologist and I have a planning appointment next week. I think the radiotherapy will be about 2 - 3weeks after that so I think you are on a comparable track to me. Hope all goes well for you xx

Hi thanks for replying. I understand your concern re oncotype, mine came back as 20 so intermediate risk but under there guidelines it should be over 26 to require chemotherapy. Or as they explained it, for the potential benefits to outweigh the risks.

I know the NHS is on its knees and so many heartbreaking stories of delays. So I feel I shouldn't be moaning about the delay however there are ways to communicate and after requesting my pathology I found my margins were not negative as I had been advised. This sent my anxiety haywire coupled with the added 6 week's wait for originally max 6 weeks. I know there's so many in far worse situations and do feel grateful that the glass is still half full. Good luck x

Hi there thanks for your reply. I replied a long message a few moments ago but it's disappeared. Good luck to you too x

Hi Sooperkat , sorry you’re having this anxious wait for radiotherapy. And interesting ( but frustrating) info re differences in waiting times at different hospitals. In my case, I was told 6 weeks initially but it ended up being 10 weeks post op. I had to wait 6 weeks for an oncology appointment just to discuss it! I was anxious about the gap but it was probably just as well as I had a large haematoma which was quite slow to resolve. I took some comfort in knowing that I had started on hormone blockers (Anastrozole) as these had been prescribed at my oncology appointment. Sorry you’ve got the added worry about the margins - would it be worth phoning for clarification? Sending love and a big virtual hug,  HFxx

And just re disappearing messages…. Something has changed recently on this site, and it seems like messages you’ve just posted have gone. But I’ve found that if you refresh the page, the message is there after all! Don’t know why, previously the new post would appear as soon as you pressed Reply…

Hi, I had op, then chemo followed by radiotherapy. I had a choice for my radiotherapy. Oxford was a long wait so I went to Bath and I started treatment there 4-5 weeks following the end of chemo.

RUH at Bath were great, but that was 2022.

Hope you get sorted soon, we seem to spend a lot of time waiting for things to happen after diagnosis and it is really stressful. xx

I had surgery on 7th February and had been given the same information initially, about 6 weeks to radiotherapy. I don’t know why they say that, it doesn’t seem to hold up for anybody. I’ve waiting 5 weeks for my HER2 result to come back after surgery and have now been told they are sending my sample off for oncotype which will be another three weeks. I’ve not even seen an oncologist yet, been told that will come after my results so that will be another month and then a wait for whatever my referral is to radio (or chemo). I was diagnosed in 14th December and feel like life has stood still with all this waiting. 

Sorry to hear you are waiting so long too. I think even if the delays cant be helped that it would at least be less stressful if  timescales were given properly from the outset. Like you say, why do they do that.

I hope your next steps go more to plan for you x

Hi HappyFeet1 thankyou for your reply and sorry to hear you also had to wait longer than you were told. I do understand that some places have longer waiting times but I do feel it would be more helpful to give honest forecasts as it just adds to anxiety and has made me feel less trusting with the omitting to mention the margins. 

I did luckily (after much persistence) get to speak with my surgeon about the positive margins. He explained that the idc has all been removed right up to the muscle and they do not go back in as research shows that to be sufficient.  I asked about my options to have that part of my muscle removed as it terrifies me despite his assurances. He has said he would need to special request to do it. I have until tomorrow to decide x

Hi Happyfeet1, thanks for this. I noticed my other message after x