Radiotherapy delay

FormerMember
FormerMember
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I had a lumpectomy and sentinel node biopsy on 28 June 2021. Margins & lymph nodes thankfully clear. MDT recommended radiotherapy & endocrine therapy. My appointment with the oncologist isn't until the 16 September 2021, 11 and a half weeks after surgery so my start date for radiotherapy is going to be much later than I had thought. I am fully recovered from surgery and am worried that delaying radiotherapy could have a detrimental effect on the outcome of my treatment. Does anyone know if there are national guidelines for the timing of radiotherapy after breast conserving surgery?

 

  • Hi

    Good news that your margins and lymph nodes were clear.  Sounds like you had the same as me ER+ breast cancer?

    According to my research delaying radiotherapy up to 32 weeks for those undergoing chemo. (for instance),  doesn't have a detrimental effect.  So, if you think about it this way, you've had the cancer taken out and you are now cancer free.  The ER+ tablets are to prevent recurrence and the radiotherapy is to prevent the possibility of recurrence too.

    I have had a hunt around the NICE guidelines and can't find anything on timescales but interestingly there is a document about women over 65 with stage 1 ER+ breast cancer research and those with and without radiotherapy as having the same life expectancy over 10 years.  The difference of not having radiotherapy and recurrence in 5 years is 40 extra out of 1000 - Having said that, it might just be a research project as I'm not sure if it's a standard practice - my friend's Mum at 82 had stage 1, ER+ and had radiotherapy (pre Covid).

    Try not to worry and try to think of the radiotherapy when you have it, as a 'belts and braces' to your treatment.

    Kindest wishes, Lesley

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  • FormerMember
    FormerMember in reply to lesleyhelen

    Thanks for taking the time to reply Lesley - it's really appreciated. Yes - same cancer as you - 3 areas of invasive ductal & lobular. The breast care centre team have been brilliant & everything went quickly & I know that I've been very lucky with the outcome of my surgery. The breast consultant said that radiotherapy should start within 3 months of surgery - and this is the reason I posted on the forum. I'm trying to be positive but last night I woke up thinking about everything so it is obviously worrying me. I wondered if anyone else had experienced long waiting times to start radiotherapy. It doesn't seem to be a Covid related delay - apparently an oncologist left & wasn't replaced. Thanks again for your support. I feel a bit 'adrift' at the moment!

  • Hello. I'm similar to you in that my radiotherapy doesn't start for another 10 days - this means its 11 1/2 weeks since surgery. Appreciate dates can slip but think they were a bit optimistic in the timescales they told me especially as this is at a different hospital. I'm ok with this as I know they are just very busy but its the old, getting very tired waiting game coming out and I don't like/want to play! 

    They got all my cancer out too so this is just like finishing off the treatment and been on tamoxifen for nearly a month now so am just wearily (bad sleeping) plodding on. Taking it one day at a time x

  • FormerMember
    FormerMember in reply to Tired Minion

    Hello. Thanks for replying & good luck with your treatment when it starts. I know what you mean about waiting!  You're actually being treated more quickly than me I think as I haven't seen the oncologist yet so haven't started hormone therapy either. With a first  oncology consultation appointment 11 and a half weeks after surgery I know that radiotherapy won't start for some time after that as I will have to have the planning appointment & CT scan too. I think I might be looking at 15 or 16  weeks or so after surgery, which seems a long time to wait. I just hope it doesn't affect the outcome. As you say - one day at a time but it's not always easy & I just want to start the rest of my treatment. 

  • Haven't met my oncologist - consultation was done by phone. He is a retired locum helping out (I check out all my medical people on the General Medical Council!) and the new one hadn't started yet. My post surgery letter from surgeon to GP triggered the tamoxifen prescription. I met nurse for radiotherapy planning as had to sign consent and get my CT scan done and she explained a lot for me. minimal face to face still to minimise germs. I have to say that I think services are overwhelmed and never mind Covid. I'm at Christie's in Manchester for radiotherapy - very very busy place but yes although I'm not sure on how my body will cope with having my boob nuked I just want to get on with it and get it over! good luck x

  • Hi, the document you refer to is probably related to the Primetime Clinical trial.

    I am not medically qualified, this is my understanding of the trial as explained to me.

    The Primetime Clinical Trial samples breast tissue for Ki-67 testing, Ki-67 is a biomarker showing how fast cells divide. The purpose is to study if some women with early breast cancer can avoid having radiotherapy after surgery as the risk of the cancer reoccurring is so low.
    The study uses Ki67 result along with other routine tests eg ER, P.R., tumour size, these results enable a calculation to be performed to estimate the chance of the cancer returning and whether a woman would / would not benefit from radiotherapy.

  • I will be starting 5 days radiotherapy week 13 post op. I was told there is a 12 week window from op to having it but our hospital so busy. They squeezed me in for the planning and I had expected 3 weeks worth but told 5 days. I also expected chest and collar bone area as I had one lymph involved but told I do t need that either. I hope it’s not because they are busy x 

  • FormerMember
    FormerMember

    Hi, I'm fingers crossed getting final results on Monday and hoping all I need is radiotherapy, not looking forward to the whole process and a wait is only going to make the anxiety worse 

  • Hi Gwills,

    My surgeon also said I would probably need 15 session but when I saw my surgeon on Monday she said that 5 days is now the norm following some very recent research from Institute of Cancer Research I think, anyway the website says this:

    “one-week course of radiotherapy in fewer but larger daily doses was found to be as safe and effective as standard three-week therapy for women following surgery for early stage breast cancer. The protocol is being eagerly sought by hospitals to help reduce demands on the NHS during the COVID-19 pandemic”  

    The important bit there is the ‘as safe and effective’. Anyway, I have my scan on Monday it won’t be much longer. Big breath in!

    very best wishes,

  • Hi. Yes she told me about the new data showing that having 5 days worth has been as successful as 15. I have had a long wait because I couldn’t decide on chemo as it was my decision and I opted for a second opinion which led to an Oncotype test. All takes time. I’m sure I’d of had it by now if decisions were clear cut. 
    good luck. I had my scan last week. Can’t wait for it all to be over with.