What happens now?

Hi there. Can anyone tell me what happens next? After a bilateral mastectomy in March I have finished chemotherapy and radiotherapy and now take arimidex. What I’d like to know is what happens next. Are there regular scans of liver and bones or do I turn up at the doctors with every niggling little pain to see if it’s something more sinister? I appreciate I’ll get check ups but it’s the testing to see whether I’ve got mets I’m interested in. Any help gratefully received.

Sharon

Sharon

Okay, before it hits you suggest you Google for CCT and download “After Treatment Has Finished”, an insightful paper on how you might start to feel.

To understand why we aren’t all scanned, x-rayed, handled etc. etc. every other month or even every 6 months then After Breast Cancer (Musa Meyer) explains it very well.

I reckon you should have a chekup with your oncologist every 3 months for as long as you feel the need although they may reduce it to twice a year, depending on your risk I suppose. I will be insisting on every three months for as long as I can foresee.

Ask your care team to give you an ongoing surveillance plan and ask them what signs to look for with regards to spread or recurrence. It is said that 85% of spread/recurrence is found by patients themselves in between checkups.

Hope this helps.
D

Thanks - most helpful.

I think every hospital has a different set-up. Ours is 3 monthly to start with, then going to 6 monthly and then yearly until you get to your 5 years although they are talking here about reviewing this (but don’t know what to at the moment!).

I think it is wise to know the signs and symptoms if your cancer spreads (and for many women this isn’t the case) because a lot of women tend to think it will go to the other breast which isn’t always the case. It took me 9 months to realise that the back ache I was having wasn’t because I’d pulled a muscle in the gym plus I’m at high risk and I think for those ladies who are in the high risk category they should be made aware of this (if they want to).

I certainly didn’t pick mine up as my GP kept saying it wasn’t my cancer that had come back - how wrong he was but in fairness to him he doesn’t see that many patients with secondaries and probably nor do a lot of other GPs so they go through quite a long set of checks before alarm bells start to ring - not always but certainly this has been the case with 2 other ladies I know.

Pinkdove
x

My hospital operates a 3 months, then 6 months and then yearly check-up for ever more! But my GP is excellent, and as I fall into high risk category (recurrence and wide spread) never minds me asking him for advice. He has sent me for a lot of tests in between appointments - skeleton x-ray, ultrasound, bloodtests etc. If he thinks I should see the oncologist he will make me an immediate appointment and I never had to wait more than a week to see someone. This gives me a lot of re-assurance and stops me imaginging the worse every time. On the other hand, and this is a biggy for many, once you’ve had BC they worry about everything and you will have to be prepared for a lot of tests which normally would not be undertaken. I guess at the end of the day, we are all different. Some want to put the whole experience behind them and just go for their regular hospital appointments, other want more reassurance and will visit their GP more often. Do what feels right for you.

Hi Dahlia
Googled CCT and nothing relevant coming up.

I had my last Tax yesterday and asked regarding follow up and all I got was they give mammograms. I asked what do I look for regarding recurrence - doc said anything different ! No scans etc. Very worrying.

He just said you had a high grade tumour, 6cms, lymph involvement and HER2 positive and skirted the issue of chances of recurrence, even though I did ask him for a % of prognosis. My niece who was with me asked the same and we didn’t get any answers. I am a person who needs the full facts as I deal with things better like this. So my head is whizzing at the moment.

Tax side effects starting to kick in !!

Liz xx

Sorry not to reply sooner as I have been away on holiday in rainy Scotland! Thank you all for your advice - it certainly seems different depending upon where you live doesn’t it. Perhaps I should see my GP and ask him as he’ll be the one in the firing line so to speak.

Hope the Tax side effects aren’t too bad Liz; my first one was the worst and the rest weren’t too bad.

Sharon