Any Oncologists there? I'm panicking.

[DontRainOnMyParade3]

I have a triple negative Grade 3 breast cancer, stage 3B, which doubled in size (length-width) in about 3-3.5 weeks.

It has probably become resistant to the current Chemo as it's been growing for the past several (5?) weeks.

My NHS Oncologist says it'll take a further month to swap me to a different Chemo drug. This seems like a very long time to me for such a fast growing tumour; 9 weeks total of ineffective treatment and tumour growth.

The Onc's reasoning is that they want to wait for CT scan results, however my objections to waiting an additional 4 weeks are:

If they are checking CT to monitor tumour size I think the results are meaningless in my specific case since the last CT was 4 months ago and since then the tumour has grown (while waiting for Chemo to start), then shrunk significantly after starting Chemo, then grown again with resistance. So surely a CT to measure response is meaningless?

Or, if they are double checking to ensure no Mets, surely giving a very fast growing tumour 9 weeks of uninterrupted growth is the best way of letting Mets develop?

Please can someone tell me I'm not going mad thinking that waiting all this time is a bad idea?!

I'm panicking and I don't know what to do / how to speed this up!

Would this be significantly quicker privately?

Thank you!!

Sorry I'm not medic. I think you need to ask the medics all the issues that you have raised. You have a right to have answers to your questions. You could try McMillan. Sorry I can't help.

I'm so sorry I have no answer for you but I didn't want to read and run.

I'm so sorry you're going through this. The waiting is horrific (I have experienced this as I had a brain tumour) and understand how you want and need action as soon as possible. I think it's a good idea to get a second opinion elsewhere, you're well within your rights to. Perhaps there is a specific breast cancer charity who can advise you of a good oncologist in the field to see for another opinion.

I'm wishing you all the best for the future

Bumping this thread for you in the hope someone knowledgeable comes along. Get well soon x

Not an oncologist, I work in oncology for a manufacturer.

Yes, if you went privately things would most likely be quicker. Do you have private health insurance? Self paying is very expensive but might be worth it for a couple of faster appointments.

I don't know where you are but in your shoes I'd find the nearest large teaching hospital and contact the private secretary for the consultants who specialise in breast. See where they see their private patients and go from there.

And in the meantime, I'd contact the medical director in oncology in the Trust where you're being treated and tell them and their secretary exactly what you've just written here.

Very best of luck.

They absolutely will not start a new chemo without a scan first. This would be a fairly typical time for changing from one chemo to the next - I'm not an oncologist so can't answer your specific question on how bad it is although I have seen them do it much quicker when they really really want to. Which to me implies that mainly they must be OK with this sort of time period, or at least tolerate this system.

Do you have a specialist nurse you can talk this through with? They would be familiar with your case and your consultant and be able to explain it best to you.

If you go private fully the costs are extortionate without insurance but if it would put your mind at rest you could self pay for the CT only to speed it up and then everything else would be quicker.

If you find reaching your Breast Care Nurse difficult, try Macmillan Cancer forum - you can use the Ask An Expert pages where you will get a very quick response from a named clinician.

Contact your local private hospital - often arranging a private CT scan that will be sent direct to the consultant can shorten your waiting time for chemo to start.

I have no advice but there is a very active (Roll up, Roll up.... thread 59) cancer thread here on MN where there is much support and wise experience. Maybe try reposting there?