wow thanks all of you for your posts.
It really does help me to read your experiences and thoughts on this topic.
I'll definitely get in touch with the oncologist. I have tried but both times been re-directed or responded to by the breast care nurse. It's OK but does feel a bit like the gatekeeper and I'd be more re-assured speaking directly to the oncologist.
And as you say - it is an opportunity to get stronger and recover from the assault of chemo / mastectomy.
thanks again and good luck to all of you.
green fingers - I had to wait 11 weeks after my WLE for my rads and was really worried. I was told there was a long waiting list and there was nothing they could do about it. I even investigated going private (over £8,000). My oncologist told me that, in my case (no evidence of spread), it would not make any difference and so I waited. I had rads over Christmas/New Year and so had to have several breaks, which also worried me.
I do believe that had my bc been a higher stage/grade (mine was stage 1, grade 2, lobular), they would have fitted me in earlier and the fact that they didn't, sort of reassured me over the risk.
I had recently come off HRT and, as I was having trouble sleeping, my oncologist wanted to wait before starting me on hormone therapy but because of the long wait for rads and the fact that it was stressing me, she agreed to start sooner. I had surgery in September, started Letrozole in November and rads in December. I have no idea whether it will have made a difference but I know the NICE guidelines are for rads to start within 4 to 6 weeks of surgery and I have since read that research shows that a long delay does make a difference. However, that is over all grades/stages I believe and so not necessarily the case for every individual.
It might be worth speaking to your oncologist about your worries, just so that he/she looks at your individual case again in the light of the wait, and moves you up the queue if he/she feels it is necessary.
Personally, I try to put it to the back of my mind now,, but it is there, along with all the other niggling worries that I have about all this.
It is worrying having to wait for treatment. I had problems after my surgery so couldn't have my second lot of chemo as soon as planned. Then my rads wait was 8 weeks. In both instances I tried to think of it as a chance for my body to recover a bit before the next onslaught.
I could have had rads sooner if I'd gone to a different hospital but it would have meant a hellish and stressful journal so I decided against.
One nurse told me to think of it as surgery critical, chemo (if you need it) critical, rads essential.
You may want to speak to your Oncologist and remind him/her of your particular diagnosis. I had a large tumour and I had to be quite pushy both to get biopsy results and also in getting my first chemo. My experience has been that consultants don't always even realise the length of waiting lists. Either way he/she may be able to reassure you if you do have to wait.
Welcome to the forums, I am sure you will find it a great source of information and support.
I've given here the link to the BCC radiotherapy booklet which gives information on what radiotherapy is and when it is given.
If you need any further support or would like to talk your concerns through with one of the trained members of staff on the helpline please do give them a call. They're on 0808 800 6000. Open 9-5 Monday to Friday and 9-2 Saturday.
Best wishes Sam (BCC Facilitator)
I had my WLE etc 11th Dec and didn't start rads until 2nd March, nearly 12 weeks later, didn't need chemo. I had the same thoughts, what are those little bugger cells up to while no one's watching em, didn't get my arimidex until 2 weeks ago, so no protection their either.
Getting my last rads today, 25 plus boosters so it's been a long haul.
Try not to worry, easier said than done I know.
I had my last surgery on November 11th and I started rads on 2nd February - quite a long wait I thought.
I don't think you should worry too much about the cancer spreading in the meantime. When you go for your planning appointment, usually about 2 weeks before the start of rads treatment, I'm sure they will check you thoroughly and the rads treatment will take account of any risk. That's why they need the 2 weeks - to plan your treatment precisely for your needs.
Good luck and try to relax in the meantime.
I'd be really interested to know how long people had to wait between a mastectomy and the start of their radiotherapy?
In my case I had chemo first, then op and was always told that there would be a six week wait after the op till rads began.
It's now 9 weeks since my op and I've been told this is due to a waiting list and it could still be another 3/4 weeks.
Apart from the fact that I want to get the treatment over with I am scared of the implications re cancer spreading. In my case there were about 5cms (grade 3) left after chemo and it's near the chest wall.
I'll be having 5 weeks of rads when I do get started.
I realise everyone's treatment is different but it would help a lot to get some idea of how long other people have had to wait.