Hi SandyNoShoes
Thank you for your post.
We are hearing from a number of people who are experiencing delays to the start of their radiotherapy treatment and as adoptomanc and ClaLiz have said this can lead to a lot of anxiety.
We are unsure which national guidelines adoptedmanc is referring to.
Radiotherapy usually starts 4 – 6 weeks after surgery although it may be delayed for a number of reasons.
The best people to discuss your concerns with are your treatment team as they will have all the detailed information about the pathology of the cancer that has been removed and the risk of it returning. You mention how busy the breast care nurses are, but they are there to support you and help with any concerns you have so we would encourage you to give them a call.
If you are still concerned about the time you are having to wait and you live in England, you could discuss this further with the Patient Advice and Liaison Service (PALS) at the hospital.
Similar services are available in Wales, Scotland, and Northern Ireland.
We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in.
You are also welcome to call our Helpline if you would like to talk this through or have any further questions. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
The number is 0808 800 6000, (Relay UK -prefix 18001).
If you would like a nurse to call you do complete this form. Ticking the box agreeing to a call back.
Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.
Best wishes
Val
Breast Care Nurse
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Hi,
I had surgery in November last year but then had to have lymph nodes taken out, so didn’t start radiotherapy until March.
It’s such a worrying time, my second surgery was delayed by 7 weeks because I had covid. You can imagine my stress levels!!!
Stay positive, you are over the worse. You could ask if waiting lists shorter at another hospital? Which is what I ended up doing.
Hope all goes well xxx
Thank you so much for your reply. Yes, I had surgery at one hospital and the radiotherapy will be given at a different hospital.
I should have discussed it with the BCN but I know how busy they are.
Once again thank you I feel more reassured now xx
Hello @SandyNoShoes
I’m sorry to hear the delay is causing you anxiety. Please be assured that there is very little chance of this level of delay resulting in your tumour coming back.
Unfortunately it’s not uncommon for mixed messages to be given: I too was told initially my radiotherapy would be around six weeks after surgery but in the event it was more like 10, I think this was in part down to it being a different hospital that delivered my radiotherapy than the breast cancer surgery and unfortunately that means a bit of left hand not knowing what the right hand is doing.
I believe that the national guidelines for delivery of cancer care require radiotherapy delivery within 13 weeks (but that may have changed given the current circumstances) which means you can insist on receiving treatment sooner.
I hope you the wait does not cause you too much anxiety, for many some of the waits are harder to deal with than the treatments itself and when you get your radiotherapy it goes OK
AM xxxxl
Hello
I had a lumpectomy for DCIS on the 6th of September, margins were clear. I saw the surgeon on the 21st of September and he explained that I would need a course of radiotherapy and most likely treatment would start four weeks after surgery but I would receive an appointment to see the oncologist first.
Anyway a few days later I received an appointment for the 16th of November. I called the BCN, as I was confused what that appointment was for, she explained to me that the appointment for the 16th was to meet the oncologist to discuss further treatment.
She explained there was a backlog of people waiting for treatment.
I did want to expain to her that I was feeling anxious about having to wait so long as I know there are far more worse of then me but I was under the impression that I'd start radiotherapy sooner rather than later. My concern is whilst having to wait for further treatment, potentially 11 to 12 weeks after surgery, could there be a chance that the DCIS could return?
Thank you x