Finished rads, what next?

Is there anyone out there who can tell me what happens now?

In last 6 months had many appointments, 2 ops for mixed grade DCIS(wire guided WLE and re-excision), 15 rads which finished 4 weeks ago, next appointment follow-up on rads with Oncologist and not till mid January 2011, Surgeon doesn’t want to see me again and can’t go on drugs trial as pre-menopausal. ER and PR positive. The last op didn’t get clear margins, so had the rads, as advised by surgeon and BCC nurse said I have to wait a year post op for another mammogram before I know if it has all gone.

This feels very odd, like i’m left on my own now and in some sort of no-man’s land and my life is on hold until next summer.

I don’t like to make a fuss as I know they are all very busy people and there are many women far worse off than me but I just need some sort of closure so I can carry on with my life and not keep thinking I still have this cancer inside me. I think I might just go mad between now and next summer!
Lorraine xxx

Hi curlylol

Its sounds like you’re having a tough time at the moment. I wondered if you might be interested in joing one of the BCC telephone support groups, they have been developed for people who have finished their initial treatment for primary breast cancer. The aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences.

Groups are facilitated by a professional therapist and a breast care nurse to ensure everyone is fully supported.

They are completely free (we pay for the phone calls) and consist of up to eight people who meet weekly. To see if a telephone support group is right for you, please contact our helpline on 0808 800 6000
or go to: breastcancercare.org.uk/about-us/our-services/someone-to-talk-to/telephone-support-groups/primary-telephone-support-group/ for further information.

I hope this is helpful.

Best wishes Sam, BCC Facilitator

Hi Loraine- I do sympathise with you. I think what you are feeling is quite usual- treatment finishes so abruptly after one has spent so long attending hospital - and then you’re just left in limbo. Some people do seem to be followed up more frequently- at least at first- but I wasn’t one of those even though my BC was stage 3 and high grade. I was so glad to be finishing my treatment - but then when it happened it felt like a real anticlimax- …with SO long to wait before another mammogram or follow-up appointment. I felt I had been cut adrift- without support

I’m fine now- 2 years on -but I beefed about this long ‘initial’ interval to my oncologist when I eventually saw him 20 months on… I’ve also mentioned it on the forums- and know that there are others who feel the same. I think the psychological impact of BC and the long term uncertainty after treatment ends is something we all have to adjust to - or as you say, we can’t get on with our lives.

I think this is an issue which is now receiving a bit more attention - I would very much have welcomed the BCC support group that Sam has suggested - so do think about taking it up, won’t you?
Good luck
Mary

Hi Lorraine i finished all my treatment end of Oct aswell ive had a check-up with oncologist after 4weeks and again 3 months after that which will actually be a year since dx so will be having mammogramme etc then , i just wanted to say that i have been attending a monthly support group with other ladies all at different stages and 2 |BC nurses and have found it very supportive and helpfull and i know they are there if i want to go but can also start to enjoy not having all the appointments and enjoying shopping, meals out with friends and getting my life back.My BCN has said many times that this is a normal feeling for women finished treatment as you feel more vunerable and alone when tx ended and youre own as it were,but give it a try its been really helpful and i have found it great to be able to help others through xxJulie

Hi, thanks for the info above and for your wise words.

I wished there was a monthly support group in my area, I haven’t been told of anything, feel like i’ve been left to get on with it now, unfortunately my designated BCC nurse wasn’t at all approachable, in fact totally the wrong personality to be dealing with newly diagnosed patients or pre-op, she was offhand.
The BCC nurse who contacted me post op was lovely, but made it clear I needed to contact the other one for further support, so I guess one does pre-op and one post-op (they should switch over).

I don’t think the telephone support group would be for me as I work full-time in a busy department and have a hectic household when I get home with the kids and their friends etc., the support group would be much better for me. Thanks for the offer, Sam, I will investigate the support group idea, probably through my GP, who was brilliant when I was diagnosed and after the two ops.

Julie - I have sent you contact request as you seem to have finished your treatment about a similar time to me and are at a similar “stage” of this journey.

Thanks again for the posts, keep them coming if there is anyone else out there who could share their experience
Lorraine x

Lorraine did you get a pack ( blue one ) when diagnosed cos there is some telephone numbers in the back of one of the leaflets ( or macmillan might be able to see if theres anything in youre area xx Julie

Yes I did, thank you for that, I will get it out and have a look tomorrow
lorraine x

p.s. Julie, that was a quick post!
Lol xxx