Finally my BCN contacted me today and told me that my appointment with my oncologist will be on 22 March - that is 7 weeks after my lumpectomy! So asuuming that will be to discuss treatment only so it will be even longer before treatment starts. I still don’t know whether will be rads and hormone treament, just chemo only or chemo and herceptin ( still waiting for results ).
Has anybody else had to wait this long before treatments starts ?
Does it effect the outcome, ie could it have begun to grow back in that time ?
Should i complain and will it do any good ?
So worried that i should be undergoing treatment by now.
Melx
Hi beardie. It’s hard isn’t it when you just want to get on with it.
My mum had her lumpectomy in December and it was around 7/8 weeks before her radio started. I think different health authorities vary, as with me they wanted to start chemo 5/6 weeks after surgery but only if everything had healed up properly. I really do not think this will affect the outcome as some people are unable to start chemo or rads for much longer. I’m sure more people will be along soon with their experiences.
Talk to your BCN again and tell her you are worried about this - she should put your mind at rest or ring the oncologists’ secretary and ask her why the wait is longer than you expected. My oncologists’ secretary is really helpful and very reasurring, more so than my BCN.
HOpe this helps a bit.
Keep us posted.
Rachel.x
Hi, i was worried too when i had to wait. My op was on the 29th October and i didn’t start Chemo until 30th Dec, yet all the literature stated a 4 to 6 weeks gap. When i phoned and queried it they said the delay was due to the bad weather we were having (snow)and people not making their appts. But i did find on the internet that is all right to wait up to 12 weeks without no adverse effects, longer than that could be a problem. But i was googling Chemo, not sure if it is the same for Rads.
Hi
I believed the time between your surgery and treatment starts differs between each health authority.
i underwent surgery - full mx and node clearance on 24th june and didnt actually start my treatment until the mid september.
I queried this with my bcn as like you i was scared the cancer would be growing. she explained that the oncologists basically like the surgery to have healed and for you to be recovering before starting any further treatment.
From what my bcn said to me, the cancer has been growing for years and that a matter of a few weeks makes no difference.
Hope this helps.
Corinne
Hi Beardie
According to NICE Guidelines nice.org.uk/nicemedia/live/12132/43315/43315.pdf (assuming you’re in England so these apply), “If adjuvant chemotherapy or radiotherapy is recommended for you, and you choose to have it, treatment should be started as soon as possible within 31 days of your operation.” If your hospital are not complying with this, point out that you know the NICE time limits and see what response you get.
The time between surgery and treatment should not vary between health authorities, the NICE guidelines are intended to eliminate that variation. If your surgery has not healed then you might start a bit later, but 31 days is what they should be aiming for.
Sarah x
Hi mel, as you know we are same authority and team, My surgery was Jan 26, my appointment with onc is March 10th and probably a couple of weeks after that for chemo, have you still not had your results yet? I would chivvy them up a bit for those at least. Rachel
I had surgery 8th Sept, results 2 weeks later, saw onc a week later (kept phoning or it would have been two weeks. Chemo started two weeks after that - 14th Oct.
Hi
I had a very long wait for my RT to be started.
Basically I had 2 ops the 2nd on 16/11/10. 2 weeks later I had results. Referred for RT to discuss pro’s & cons.
I was very lucky in that I had DCIS so not invasive. RT is a preventative treatment & I wasn’t facing chemo or any hormone treatment.
Long story short I didn’t receive my appt with my Onc until I chased it up in January 11.
They recommended RT due to size of DCIS area/age & had a few family members on same side of family with various cancers.
I was told once I had confirmed I would go with their recommendation (17 January) it would be started in 4 to 6 weeks.
But I heard nothing; so as I was beginning to freak out I wrote & complained quoting Nice guidlines as I was weeks over them. If within guidlines I should of started RT end of December 10 & now mid February.
Anyway I copied my GP in; 2 days later he called me and reassured me RT does not become less effective until 6 months after surgery/chemo.
Onc also called me & told me the same. Delay occured as simulator being replaced.
I couldn’t find anything confirming the 6 months, but did find a study suggesting should start within 20 weeks which I have (week 14 from surgery).
New simulator still not available & I had planning on CT scanner & finally started RT this week (1/3/11 for 3 weeks).
Don’t be afraid of making a nuisence of yourself; if you decide you want to complain I’d suggest you write as they have to respond to letters; telephone messages normally get lost.
Also you could contact the Pals team in your hospital who can also help push this along for you.
My surgery went like clockwork & I wish you well in finding out your results. The worst bit is waiting for results. I wrote down my questions before I went to appt for results as I found it helped me to get all the info I needed.
Take care
Lynne
Hi Mel
I had WLE on 13th Dec and SNB on 30th Dec, saw Onc on 17th Jan but don’t start RT until 8th March. Was told that the delay was a resourcing issue and caused by backlog partly due to severe weather conditions in December. I wrote to my MSP who has contacted Health Secretary and is pursuing answers about the resourcing issues and why I have had to wait for 13 weeks for RT. I also complained to Health Board.
My Consultant Onc saw me as a result of my letter of complaint and tried to reassure me that the delay would not be detrimental, but I feel that it has taken away a lot of confidence I had that I would hopefully make a full recovery. He also told me that as I had started taking Tamox on 19th Jan that this was giving me protection from recurrence.
Phone your Onc’s Secretary and ask for an earlier appointment or even a cancellation.
Good Luck,
Pauline