Hello everyone
I’m new to this so do bear with me if I make a mistake!
I had my WLE and sentinel node biopsy in May - 3rd week and needed a re-excision of margins a couple of weeks ago. I’ve been told there is a 10 week wait for radiotherapy which is completely at odds with the National guidelines of treatment starting within 31 days of op. and that I may need to wait 4 weeks just to have appt with oncologist!! Initially i was lead to believe that radiotherapy would commence about 5 weeks post-op providing the wound had healed. Just the thought of this delay is doing my head in and had I realised that there could be this sort of delay I might have opted for a mastectomy. Does anyone know if it’s possible to be transferred to another hospital which is able to meet the national recommendations, or what the cost of private radiotherapy (3weeks daily mon- Frid) would be? Also if one went privately, would that then mean all follow - ups and treatment would have to be paid for privately?
Hello Atat
Welcome to the forums, this must be very difficult time for you. I’m sure other users will be along to support you soon.
In the meantime, maybe you would like to talk things through with a member of our helpline staff who are there to offer practical information as well as emotional support. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Best wishes
June, moderator
Don’t know if it includes follow up costs etc but we were told last month that 15 sessions of radiotherapy privately would be £10,000 (this is in Central London at The Harley Street Clinic so probably as expensive as it gets!)
Is there a patient liaison service at your hospital? Might be worth having a word with them or one of the Cancer Charities to get some advice.
Good luck
I would have thought you could be referred to another hospital for treatment by the NHS, if you’re prepare to travel.
Although not for reasons of waiting list times, I asked to be referred to a different hospital for radiotherapy and this was easy to arrange and worked fine. If I’d stuck with the radiotherapy unit to which oncology patients usually travel from my town I’d have had to make an 80 mile round trip every day in snow in the depths of winter. However, my family live within walking distance of a hospital in a different town which has a radiotherapy unit so I opted for that unit and was able to stay with them when the weather was bad for travelling.
If I were you I’d go ahead and ask if you can be referred elsewhere under the NHS. Even if it’s somewhere too far to travel every day it would still be cheaper to stay in a B&B or similar than to spend your money on private radiotherapy. I know that the hospital where I had my radiotherapy has special arrangements with local accommodation providers for rates for cancer patients some of whom have to travel a long way to get there for cancer treatments.
Hi, am also new to this site, was diagnosed 23rd Jan, operation 13th Feb - lump and 3 lymph nodes removed, got results 6th March - nodes clear and lump had a clear margin. Then had to wait until 6th May for 20 Radiotherapy sessions - 2 Months !! did not know it was supposed to start within 31 days. Feel a bit angry now. Maybe it was because it was found early with a routine Mammogram. Where I live they have started giving Mammograms at 47 which I had, so when I had my 2nd at age 50 they found a Dense Patch compared to my previous one, they could not see a lump but compareing Mamms it stood out, so I am very grateful they started giving them a 47. I was given the choice of 2 hospitals to have radio - have you been given the choice and is one available quicker than the other.
I meant to add is it ‘normal’ to feel tired most of the time?
Hi Atat,
Let us know how you get on. I do hope that the tiredness abates soon. You don’t say whereabouts you are being treated but I hope that if your local hospital is not able to get you started on radiotherapy soon, you are able to find somewhere else to go, albeit some distance away (if that’s what you choose to do).
By the way, I disagree with the assertion made below that it might not be much quicker to have radiotherapy done privately because private hospitals don’t have their own radiotherapy equipment. Yes, private radiotherapy patients are often treated on NHS premises but they do not join the queue along with all the NHS patients - otherwise what would be the point of going private? You would undoubtedly be seen more quickly under the private system but it would be a costly experience.
Best wishes.
Hi Atat
I waited exactly 10 weeks from the date of my WLE and SNB to my radiotherapy. Had my oncologist appointment at 8 weeks.
The waiting is awful, you just want to get on with it
Best Wishes
Jaye x