Hi, I am getting more and more worried about the delay in starting radiotherapy. I understand the national guidelines are 31 days between surgery and starting radiotherapy. I am now in the 6th week after surgery and still have no idea what radio therapy or drugs I need or when this is likely to start. What is the normal timescale? within the 31 days?. I am under pressure from work (holding up everyones Christmas leave) and so many directions to let people know when and for how long I may be having treatment but just seem to be waiting and waiting.
I have read the chances of recurrence increase with the length of the interval between surgery and radiotherapy. Also having finally recieved my pathology report from a wide local excision, after repeated requests it states ‘excision may be incomplete’ the consultant however told me there were clear margins? is this normal?
I have been told I am being dealt with by the oncology department now, so do not know who to ask about this i have had to chase so many times about missed referrals and asking for copies of my report I just feel I have run out of strength but am going mad at the same time. Does anyone have any similar experiences or suggestions?
ohdeardear
i would phone your BCN and talk to her about all your concerns, she should be able to explain your pathology report and see if any appointments are pending and chase them up if necessary.
I too am kind of in the same boat as you. I had surgery (ANC) 5 weeks ago and saw my onc last week who has said we will just wait till after Christmas to start rads as by the time they do the planning there will not be 3 full weeks before Christmas!!! Grrrrr!!!
i too am worried about the effect of a delay, I thought it had to start within 31 days of surgery unless there was a good cause eg still healing.
i would be interested on anyone’s views on this? Should we just shut up and put up or make a fuss??
One thing I should not worry too much about is the effect of all this on your work ( although I know how u feel) you just need to concentrate on you right now and put your energy into getting better and not worrying about the effect on others.
Good luck x
Sorry that you are both experiencing delays.
I had my WLE and SNB on August 28th and saw my oncologist on 1st October to discuss Radiotherapy.
She told me that I would wait about 2/3 weeks before I would have a planning session then another 2 weeks before my treatment started.
I asked the question re NICE guidance suggesting that adjuvant therapy should start within 31 days of surgery or as soon as possible where medical reasons prevent this and was advised that the local guidance was to start within 8 weeks of surgery. She didn’t seem to think it would make any difference to reccurance.
However as I think NICE are always cautious when producing guidance I sent a written query, via email, asking why the local guidance is at odds with NICE (although I do understand that they are guidelines) and what the impact of a delay beyond 31 days would be to me.
I had a planning session two days after my oncologist appt and completed my Radiotherapy on 1st Nov!
If your BCN can’t help you then if your hospital has a Patient Advice Liasion Service they will help get some answers for you.
I have since discussed this with the oncologist while having Radiotherapy and explained that I thought due to the anxiety that we all experience with BC that to see two sets of guidance at odds with each other is unnerving and worrying as we do, the concern is that delay will have an impact. She was happy that I asked questions and was happy to discuss it with me.
Don’t be shy, speak up and ask questions especially if you are concerned about the impact the delay may have to you.
Hope everything goes well for you both
Take care
Karen
wow. thanks for posting about how you were treated… it is certainly something that I will bring up after my WLE and SNB… we are forever being told the waiting game is the worst so having to wait 2/3 weeks before starting rads seems a long time… I will definately be following your advice if my waiting time is over the 31 days . xx