Long wait for Radiotherapy

Hello

Have Grade 3 breast cancer, 2/3 nodes clumping micrometastasis.  Operated 29th July, Oncotype score 12 so no chemo only radiotherapy, and hormone therapy. NICE guidelines 4-6 weeks from surgery to radiotherapy, just have had my date through, it will be 12 week 4 days (88 days) post surgery! is this normal? feeling like it's shutting the gate once the horse has bolted!  Went for planning for therapy today and was cancelled so now concerned if not seen 2 weeks before planned date may be delayed further... anybody had similar experiences? or able to reassure me...

Ta

  • Hello and thanks for posting

    I am sorry to hear about your situation and can appreciate you are worried about having to wait so long for the radiotherapy.

    You are right in saying the best practice guidelines do recommend treatment is given 4-6 weeks post surgery. However realistically speaking it is my understanding rightly or wrongly that many patients fall out of these time frames pre or post pandemic but of course this understandably is a worry for patients.

    How a delay in treatment affects different people will vary so it is important you discuss your concerns with your team and also chase up when your planning appointment will be rescheduled for. Hopefully they can talk this through with you and reassure you further.

    If you are unhappy with your treatment you could raise a complaint with the hospitals PALS department here but you may wish to speak with your team first.

    Do get back if you need to or call one of the nurses on 0808 800 4040 and we will be happy to talk to you. We're here Monday-Friday 9-5.

    Best wishes

    Naomi

  • Thank you for your speedy reply.

     

  • Hi 

    I'm also facing a long wait!

    I had my lumpectomy 8 weeks ago, I've now been waiting 5 weeks for oncotype results so I've still no treatment plan.

    It's really worrying especially when you read that a delay of over 60 days post surgery increases your risk of the cancer returning.

    I really hope you start your treatment soon.

     

  • Hi, chase up Your oncotype score -mine came back within 13days. Phone your breast care nurse and they can only ask.

    Im waiting for an appoitment with chemo oncologist -as oncotype came back 22. 
    I'm gunna phone them tomorrow as waited 6 weeks from surgery date already.

     

    Efffie 

  • Hi

    You need to chase this up with your cancer nurse and they will get things moving for you. I'm still waiting for radiotherapy it's been pushed back a further 2 days so 90 days post surgery a day off 13 weeks. I'm appalled at the difference in treatment post surgery the lack of communication, no reassurance or follow up, when I did call my nurse she then was able to find out when my appointment was and told me it was a phone call... I was in shock, after crying alot my nurse got back to me reassured me and had changed it to a face to face, by then I'd calmed down a bit and was embarrassed and said change it back to a phone call if that's what all the patients got their results but my cancer nurse said it was fine. However when I met my Oncologist he clearly felt he needed to make a point that I had been unreasonable and told me he only has face to face appointments s with patients who are going to be having chemotherapy... I did not at that time know what my treatment was to be... so much for meeting your oncologist and talking about your results and agreeing with treatment. 
    I was very happy to find out that he was a locum and has now left my hospital but my treatment has remained the same and I'm feeling that I'm not sure why I'm bothering with radiotherapy.

    sorry getting a bit morose, you must chase this ASAP. Good luck hope it all goes well

    xxxxxxx

  • Hello and thanks for your post, 

    I am sorry to hear that you are waiting to start radiotherapy treatment. I am also sorry to hear about your experience at the hospital.

    The pandemic has meant that doctors have had to make very difficult decisions about who they should see on a face to face basis and who should have a follow up appointment  over the phone. The trouble with this is that everyone has different needs and some people find it far more helpful and supportive having a face to face appointment.

    I am sorry to hear that the doctor made you feel awkward asking for a face to face appointment and I do hope that from now on you will have a better experience.

    I hope that you are managing to get some support whilst your going through this treatment. I am not sure where you are in the country and whether you are near a Maggie Centre which you can read about here

    These centres are attached to hospitals up and down the country and are a great support for many people going through treatment.

    If you are not near a Maggie  centre there may be other support groups at your hospital or you may be interested in the breast service run by the charity Breast Cancer Now. It is called 'Someone like Me'. They try to put women going through a similar treatment in touch with each other. Have a  look at the information here

    I do hope that some of these links maybe helpful. You are of course more then welcome to give one of the nurses a ring on the helpline to talk this or anything else through.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take Care,

    Catherine

  • Hello AndieG,

                            reading your post the thought struck me re consultants that it goes beyond giving the risk of giving them as a person covid,it also means that a whole MDT effectively treads water for days and potential operations get pushed back,so in that sense l can understand his reticence to do face to face.

    This said,its no comfort to people like yourself caught in a horrid situation having to shoulder all the increased anxiety and worry,its hard enough at the best of times,unfortunately you are having to negotiate the worst.

    l hope things pick up quickly for you and that the end result is the complete success that will go some way towards making your ordeal a little easier to accept,

                                                                                             best wishes, David

  • Hi David

    I take on board your opinion but have to disagree. As a practice nurse who has worked throughout this pandemic face to face with children and adults for vaccinations, dressings etc worked in the 'hot hub' assessing potential Covid positive patients,and volunteering at the GP lead vaccination centre. I have even visited  patients in their homes and not contracted nor infected anybody with Covid. Taking  precautions using PPE and having regular Lateral Flow Tests. I have seen My surgeon several times face to face as well as the cancer nursing team, and most recently, my recent radiotherapy planning appointment team, all have followed  Public Health England guidelines... My oncologist has now left the trust and a new one has been allocated, his secretary has called to book an appointment with all his new patients as he would like initially to see them face to face. 
    regards

     

  • Hello AndieG,

                          No need to disagree since my understanding does not constitute acceptance,and as l said it leaves current sufferes in a really invidious position in terms of getting timely treatment ,so its good to read of improvements in your situation,

                                                                   l wish you well, 

                                                                                              David

  • Hi All. 
    I was given my oncotype results over the phone -which was a big shock as I presumed it would come back normal. And I was told I'd get an appoitment with a chemotherapy oncologist within the next two weeks.
    I cried and cried but waited and no appointment arrived.

    I phoned on day 9 to chase and the secretary said no spots are avialble due to consultant being on annual leave so my appt delayed.

    I had a my telephone call appoitment with the chemotherapy oncologist today -I was told my my cancer nurse it was to discuss the likelihood of chemotherapy if I agreed. The doc Went through my tests results and told I needed chemotherapy and I need appt to sign the paperwork in the next 2weeks plus pre assessment .
    Im disappointmented that I was given a specific telephone Time date to be given rubbish news- when I'd been for results with my hubby.

    Then having a chemo discussion over the phone is very impersonal and defo recommend face to face appoitment. My phone call was ok but i would have liked to have chatted to my chemo doctor and discussed things in person than over the phone. 
    However im relived that I have a plan of attack- for me 9weeks chemo then radio then 10years meds. A long road but worth it in the end.

    Please push to speak to specialist nurse or :secretary to chase up appointments. Maybe ask to be referred to different hospital with less waiting times. Or PALS to raise Any concerns.

    Efffie x