I had WLE on 13th December 2010. Because tumour was found, I then had SNB on 30th December - nodes were clear. Because of holidays etc, I had to wait until 13th January before I got results of SNB. I then saw Onc on 17th January and have to get 15 Rads and Hormone Therapy. Started Tamoxifen yesterday.
I got a letter today with dates for radiotherapy and this is not scheduled to start until 9th March ie, 13 weeks after my surgery to remove lump!!
Literature I have read all says that rads should start between 4 - 6 weeks after surgery, and I have read somewhere on this site that to be effective radiotherapy should start no later than 7 weeks after surgery. As my armpit will not be involved in rads, I assume date of WLE is what counts and I am now almost 6 weeks on from that.
I did phone my BC nurse who said she agreed with me that it was a bit extreme, and said that she would speak to Onc but could not promise anything.
Does anyone know if there are specific guidelines about the timing of the start of radiotherapy?
Hello Polly Kay,
Sorry to hear that you’ve had to join us ladies who have all had bc at some stage.
I waited 12 weeks when I had my rads last August. I found out that lots of the ladies having rads at the same time as myself had only waited 4-6 weeks. I was very annoyed as well as being concerned that the time should have been a lot less than 12 weeks. Keep getting on to your BCN and see if she can get your treatment brought foreward if possible. The reason that I had to wait so long is that they were waiting for my results which seemed to take forever to come back.
I hope that you can get your rads sorted asap,
Best Wishes,
Isabelle xxx
Hi Polly Kay,
I think there are guidelines but not sure where you would find out. Someone i know had Bc a bit before me and was only given rads. Her appointment was a long wait as well and so she wrote the the primary trust I believe and said she would go to a local paper too. They immediately started offering longer hours at the unit and she got in much quicker but so did all of us after her too. My onc will only allow 3 weeks exactly, more or less between surgery and chemo and then chemo and rads. He said that is the safe gap as you are covered. I had to start my tamoxifen as soon as I started rads because it takes a few weeks to fully cover you and that way I would have no gaps between each of treatments. He is crazy on research so I guess this comes from a study? Maybe just his idea.
I would ask the onc outright if he can guarantee it is safe for you to have that long a wait. If he doesn’t get you in call pals, primary trust or someone like that
Good luck with your rads. Buy some vests or crop tops ready as bras were a no go after the first week for me as touched the area.
Good luck
Lily x
Scuse my ignorance Lily, but what is pals?
Thanks for the advice about bras, will have to go on the hunt for crop tops.
Pauline x
Hi Polly Kay
You should start radiotherapy within 31 days of surgery, according to NICE guidelines for treatment of early BC. You can find the guideline at nice.org.uk/nicemedia/live/12132/43312/43312.pdf, and the time period is quoted on page 16, para 1.6.8.
Try quoting this guideline to the hospital and see if that makes them pay attention!
Although it’s boring to read, it’s worth reading all of this guideline since it tells you what treatment you should be getting and when, even things like being offered help with physiotherapy or exercise.
Sarah x
Thanks a lot Sarah. I will print that stuff out and make sure I quote it when speaking to BC nurse next week.
Pauline x
My onc said he had to start treatment within 31 days of me deciding on treatment. He has’nt said anything about time since WLE- Ihad mine on 23rd Nov. and to date still have’nt got appointment for planning, however that is my fault for dithering over treatment options.
Thanks for the information link Sarah.
I was wondering when treatment would start after my chemo.
It also seems as though my chemo should have started within 30 days of surgery but took 7 weeks and this was brought forward by a further 4 weeks when I complained it was taking too long.
I have saved the document to refer back to.
Janette xxx
There is a caveat on that 31 days, which is they won’t start rads until your surgery wounds have healed over. In my case because I’d had a combined boob job and lumpectomy I didn’t start rads until 7 weeks after surgery because of the healing time needed.
Sarah x
Cheshire Sarah, thanks for that link to NICE guidelines, I’m ploughing through them now.
Probably act as a good solution for night sweats and not being able to sleep. But it is important to know what treatment we are supposed to get.
It was suggested earlier in this thread that I should consider contacting PALS. Can anyone tell me what this is? Also I am in Scotland so would I be able to do that here? Thanks girls.
Pauline x
Hi Polly,
PALS is the Patient Advisory Liaison Service for the NHS, I’ve put you the link below that gives you further information.
Jo, Facilitator
Thanks Jo. Ive been researching this all morning and have finally found NHS QIS (Quality Improvement Scotland)Clinical Standards for the Management of breast cancer services. This guidance states that radiotherapy should start within 42 days of final therapeutic operation. My date for radiotherapy to start is well outside these guidelines!
Pauline
Just spoke to my BCN who spoke to Onc today, but didn’t get anywhere with him. He told her he understood my concerns, but the delay was due to “pressures of resources”!! He said he would be happy to meet with me to discuss the situation. I’ve made an appt with him next Monday, although I feel I will probably be wasting my time.
It means that I am not receiving rads until 13 weeks after my tumour was removed and guidelines say it should start within 42 days. Anyone got any idea of how this could impact on my chances of recurrence? I am beginning to wonder if will be worth having the rads at all.
BCN is going to speak to someone else tomorrow and said she will escalate it to hospital management if she doesn’t get anywhere. I will also e-mail my MP I think. I feel so angry and certainly don’t
need the added stress all this has caused.
Sorry for the rant!
Pauline
Hi Polly Kay
Sounds like you are absolutely entitled to a rant! Have you tried the option mentioned earlier of contacting the PALS service at your hospital? 13 weeks really isn’t acceptable unless there’s a clinical reason for the delay, which your onc has said there isn’t.
Sarah x
Hi Sarah - unfortunately we don’t have PALS in Scotland and I can’t find an equivalent anywhere on net.
Pauline
HI Pauline
I would have had an 8 week wait in Brighton but was offered the chance to have it in London within the 31-day NICE guidelines. The onc said it’s in their interest to move as many patients to other hospitals as possible as it helps them meet targets, even if the treatment isn’t carried out in their hospital.
Don’t know about stats and timing but maybe your onc could fill you in. Surely they have a contingency if they’re so short of resources?
good luck xxx
Hi,
how about asking if you could start hormone treatment if you are ER+ or PR+ or both. I had to start tamoxifen on day one of rads as it takes a few weeks to cover you. That should help keep it at bay. Sorry didn’t get back about PALS and sorry it was of no help to you. Is private very expensive as that is an option but one you shouldn’t have to consider or asking to go as a cancellation at short notice?
Good luck and stick up for yourself. The local papers may back you
Lily
Polly, darling,
This is YOUR body, so you get as stroppy as you like. I know it’s not something we women do, digging heels in and all that, but perhaps you can turn some questions round a bit.
What would it need for you to start treatment within 42 days, as per guidance? Would it mean you having to travel to Hospital X, yy miles further away from home? Have you thought whether you’d be able to deal with that kind of regime? Consider that by the time you’d waited for the original date, you could well be finished with treatment if you were able to go to another hospital.
What would the hospital need to do in order for you to get treatment there within 42 days? What are they doing to reduce their timescales?
Is there a health ombudsman? I know it’s a pain in the bum to be dragging this kind of thing around when it really shouldn’t be necessary, but that kind of action on your part might at least help you feel like you’re actually DOING something. And that can’t be sneezed at.
In brief, kick up stink without feeling guilty. This is YOUR body, YOUR life, no-one has a higher stake in this than you do.
CM
x