Hi
Could anyone help- i had my lumpectomy just over three weeks ago and i am still waiting for an appointment with my oncologist ( which i don’t have yet )so that some kind of treatment can start. I have started on Tamoxifen but I am worried that either radiotherapy or chemo should be starting soon. (I am still waiting on a herceptin result but that could still be ages away ) Are there any guidlines that state when treatment should begin etc…
melx
Hi Mel,
Have you been back to see your surgeon post lumpectomy and got all your path results? A lot of that info informs the oncologist as to which treatment path you take…
The BCC literature says that ideally you should start further treatment 4-6 weeks after surgery…However…when I raised this with one of my bc nurses she said that that was an optimistic guideline and depending on circumstances it could be longer than that. And apparently it won’t affect outcomes if there are delays.
For example where I am, you have your surgery, 3 weeks later after healing etc, see the surgeon again and get your path results, then at that point if you don’t need further surgery, (unfortunately I do!!), your appointment is made with the oncologist which could be 2-4 weeks later depending on his/her availability. Once you see him/her and your treatment is decided upon it could then be another 2-4 weeks before that starts…and so on…
It seems every case is individual (which is a good thing),and although there is a system, each hospital does things slightly differently.
If I was you, I would call one of your bc nurses and ask and say you would like to know whats going on and what the timescales are for the next bit. Push them for info. Mine are v helpful and will make phone calls where necessary etc.
Sorry that was a bit long winded but hope it helps.
The waiting is hell isn’t it!!?
Hi is it surgery results you are waiting for?,if it is mine was 2 weeks after surgery I was told at this appointment that I would receive an appointment within the next 2 weeks to see Oncologist and start chemo.I waited 3 weeks and hadn’t heard anything so on the Monday I rang BCN and she gave me Oncologists secretary’s phone number.I rang her and she fitted me in the on the Wednesday and I started chemo following Wednesday.I think chemo/rads should begging 4/6 weeks after surgery,to give it time to heal.
Best wishes Melxx
Ha posted at same time as you wandy lol
Melxx
Hi stressymessy!
At least we were saying the same things!!
Wandyx
Hi
In my case the surgery (2 ops) went like clockwork excellent results for me. I was referred to Onc on 1 December 10, to discuss pro’s cons; told to enjoy Christmas appt would be in New Year.
New Year came & went no appt as expected. I called BCN who chased this up; she got back to me confused as appeared no appt allocated. I then had someone from the “Onc” team phone to ask me to go & see her 2 days later at her clinic. I had apparently been overlooked!
Appt on time, surprised Rads recommended as I thought I was a low risk. But I agreed to go with it. Then again nothing heard, I was expecting planning appt to be advised in approx 4 weeks as simulator being “serviced”. I then wrote & complained mainly due to not being able to commit to any appointments at my own work; & freaking that delay (2nd op was 16/11/10) meant effectiveness of RT would be less & this would increase liklihood of recurrence.
Anyway complaint got desired result in that Onc contacted me by phone. Simulator being replaced not serviced (her registrar unaware of this! I found this surprising as appears my BCN didn’t either!) & all planning on hold for at least 4 weeks.
Did reassure me delay didnot reduce effectivness; this doesn’t start until 6 months have elapsed. My RT is a preventative treatment to reduce recurrence risk.
Then out of the blue another phone call inviting me to a planning appt using CT scanner as new simulator installation not going to plan, & they were now making alternative arrangments (not sure why they didn’t do this anyway, especially if the area they needed to plan was quite straight forward.
Delighted as I thought I could be waiting another month, but about to start Rads on 1/3/11 for 3 weeks.
Keep strong; a delay is OK if treatment started within 6 months although I don’t think they take enough account of how this delay causes stress.
If I was you I’d contact my BCN; if she can not push this along consider a written complaint quoting NICE guidlines. I copied my GP in as well & ended up with 2 phone-calls but they both advised re the 6 months.
A bit of a sob story, but please don’t dwell; if you are not happy and this causing stress as it did me make a nuisance of yourself.
Take care
Lynne
Thanks everyone - i think i will give my BCN a call and see whats going on. I just start to panic and keep thinking that the longer i wait the more chance there is of this thing growing again. One day I would just love to not think about cancer and have a normal day again.
Mel x
Hi Mel-unless you are having chemo you probably wont need to see an oncologist for ages-your surgeon will set up the rest of your treatment and rads cant start till your wound is properly healed.If you are Her2+++ then you will need chemo and will get an onc appt to set that up so I guess they are waiting for that.Remember that once the tumour is out[the op] the urgency has gone.just keep in touch with your bcn and try not to worry too much[easy to say I know].
love Valxx