I had my results appointment yesterday with my surgeon and bcn. Was told I need chemotherapy before radiotherapy and bisphosphonates and CDK46 (am already on anastrazole and have been since diagnosis)
What has worried me is that they said the estimated time for an appointment with the oncologist to discuss chemotherapy will be 8 weeks due to oncology staff sickness. Given that it is likely that for chemotherapy to actually start after that appointment it could take another 3-4 weeks (?) that would take me to 14-15 weeks before my chemo begins.
My histology report said there was some vascular invasion at the lateral margin of the lumpectomy but the MDT don’t think it requires further surgery just a radiotherapy boost to that area. But I’m worried that the delay in starting chemotherapy and radiotherapy after means that there’s a big window for stray cells to be travelling elsewhere in my body.
Has anyone else experienced such long delays? (It took 4 months from diagnosis for me to have my surgery too but from a NHS timeline point of view I was receiving active treatment because I was on anastrazole from the start).
Should I see if I can transfer to another NHS Trust for oncology? How do you even do that and how do you know if their wait times are shorter anyway? Or should I consider using my husband’s family BUPA cover and go private for chemotherapy? Don’t quite know what to do for the best so if anyone has any experience of this I’d be really grateful to hear your advice
Yes, my wait ended up being just over 18 weeks from the date of my lumpectomy and lymph node biopsy (clear margins and nodes) to first chemo round and unfortunately in that time the cancer did grow back in the same place.
I have just had my chemo appointment 9 weeks after mastectomy and my oncologist told me that the aim is to start treatment up to 12-15 weeks after surgery.. I asked what happens after that time and he said they didn’t know as they had only ever researched up to that point!!! If your cancer was a grade 1 or 2 I would imagine you will be ok as you’ve already had your cancer removed ?? And as you’re on hormone tablets you’re using the main tool to stop growth.. I’m not on anything at all and was worried because of that and they said that my cancers been removed and chemo may be overkill but it’s just another way of reducing risk.. I’m trying to eat foods that help slow down tumour growth whilst I’m waiting , hoping my bodies helping it along with angiogenesis.. hopefully start in 2-3 weeks is what they told me more like 3 because of bank holiday. It’s important to keep stress levels down so you don’t create inflammation..
if you do have private it may be worth asking what their timeline is like.. I did this with MRI and it was the same wait.
Good luck with everything though.. it’s a real scary time isn’t it??
I had a long wait too, and it fried my nerves more than the treatment did. What helped me was ringing the breast care nurse and gently pushing for any earlier slot or cancellation list. Sometimes they can nudge things behind the scenes, but you have to poke a little. I also asked my GP to flag the anxiety the wait was causing, which weirdly sped things up.
I just had my oncology appt 4 weeks after surgery and I start chemo next week, it all feels very soon as I am still feeling some after effects though I have healed quickly. I had initially been told the wait would be longer but we seem to have gone into ‘nuke it from space’ mode
Glad you’re getting your treatment started, I’ve just finished chemo and will start endocrine therapy soon.. and radiotherapy.. I only had 3 cycles because of side effects so they stopped it.. my body doesn’t like chemo it seems but then nobody’s does!
