Jackster50, and everyone... I know exactly what you mean about feeling left hanging. After rads I felt quite alone as there were no more appointments to schedule my days, and no one to see to ask for answers. I think this is a normal feeling as there are many such reports about the feeling of 'abandonment' but I think it could be alleviated if there was a kind of 'wind down' session with a breast care specialist of some kind who could explain what happens next, and what you might experience as your body recovers. I guess they concentrate their efforts on the actual treatments and not on our feelings and emotions.
8 weeks after finishing rads I had an appointment with the radiotherapy/oncology unit to follow up my progress, and this was a kind of signing-off from treatments, but of course I stay on the monitoring radar. It was then that I mentioned my concerns about the small lump I had found as my breast had started to ache again. The Dr was very reassuring, said often the aches come and go for a while, but my concerns were acted on very quickly to bring me a phone call the following day from the Breast Nurses I had lost contact with (they had moved the breast clinic to a different hospital) and they arranged for me to get seen by my surgeon and get scanned the following week, rather than wait for the routine appointment for the surgeon sign-off and the 12 month mammogram. This brought my appointments forward by about a month.
I did feel a bit foolish worrying about a lump after so much chemo and rads - I knew it was unlikely to be another cancer, but still... your mind won't settle.
At no time was I made to feel foolish by the professionals; everyone who examined me reassured me that I was right to mention it, that sometimes these things can happen, and thought it was worth checking out further.
It was of course a relief to see the scans myself and understand what I was feeling as a lump, was indeed a lump - but not a tumour.
So for those who are still left hanging... I think it goes that you get a kind of follow up appointment to finalise your oncology/rads. (It may not be with your oncologist - I haven't seen mine since before my last chemo as the rads specialist then took over, but other hospitals may work differently. The rads specialist explained they are all oncologists.)
I think after that, you should get a follow up appointment with your surgeon, probably at the breast clinic. And you get your 12 month mammogram appointment. It may be that the mammogram results are sent to the surgeon before you get that appointment - I am not sure... but there does seem to be some kind of system going on to close our active treatments... it is just that we aren't informed that it is going on so we feel left without support!
If you are still receiving meds or treatments your experience will probably be different, but for me, I get no more tablets or infusions as mine was a TN cancer.
Now I need to get on with my life and keep monitoring myself for any lumps as anyone would normally. It is hard to get back into the swing of it... I still feel full of chemo, have a foul taste in my mouth, pins and needles in my hands, and aches in my limbs, and my mind isn't as sharp as it was.... but I am getting stronger.
I am grateful for having my life back.
I'm sorry I don't join in so often on this forum. It is people I met here that have kept me cheered and supported, but I find this forum structure frustrating to use. I know they are working hard to improve it.
MY chemo started the last day of August 2012, so I joined the September starters on here in a Facebook group (September Sapphires) where we were able to discuss things in private and share pictures and get to know each other aside of our cancers. It was a welcome support, and friends have been made, and a few of us have met in person.
THANK YOU to all who post here in support of each other. Sharing means others going through similar experiences feel less alone, even if they don't have the confidence or means to post messages themselves. I still try to use the BCC boards to share my own experience to support others.
Sorry for the long post! I hope some of it helps those who are left feeling - what happens next!
Enjoy your day everyone,
June22