No contact from oncology dept is that normal?

Hi Littlenicky 78 welcome to the forum and I think you are experiencing what most of us have after treatment and that huge gap of not having anyone keep in touch or being through treatment and getting on with life. It feels  a little surreal because we have been surrounded by people for such a long tome and then suddenly we are on our own and that can very scarey.

They dont normally keep in touch unless you have a problem.

Hi

As you no doubt know don't expect any consistency regarding treatment/opinion/support from one hospital to another and some are far better than others. I was diagnosed July 2019 and had 5 meetings with oncologist throughout re treatment which finished with a final 'sign-off' meeting (far later than it should have been) in Nov 2020 which was bought about regarding scans I needed prior to reconstruction.  I believe that I should have had the Nov meeting in the May after rads (and all other short term treatments) were complete.

I'm now part of my hospitals Open Access Follow Up program where I had a one-off meeting initially to discuss how I was and make sure we were all clear regarding treatment for next X years (hormone gubbins), I now contact them if I have any queries or issues and they're not too bad!

I, sadly, wouldn't expect anyone to check in on you, they just don't have the time/resources, the onus is very much on you to make contact with them if there's anything that requires discussion...its just the way it is.  Its a recognised 'issue' the full on, disciplined treatment schedule where you're really supported and then after treatment it suddenly goes to nothing and you're all on your own and there's courses run my McMillan which cover this and how you may feel.

Good luck and hope your recovery continues well

Sam

Hi

As the others have said, there tends to be an open access approach to follow up. There used to be more regular follow up but most clinics stopped it, the official line is that it causes too much distress for people in the lead up to the appointment, but I'm sure that money plays a part.

Unfortunately, as your treatment was during this pandemic, you won't have had as much access to the other forms of support that exist. It is fairly acknowledged that we all feel like we've fallen off a cliff at the end of treatment and are sort of lost. A lot of hospitals and organisations try to address that with events and programmes for cancer patients at the end of treatment, but they don't seem to be running at the moment. Some places have online sessions which you can join in with but they are not the same as the general "what now" events that used to be available.

Breast Cancer Now used to run a Moving Forward course, which is now suspended due to Covid, but they do have something online here

Breast Cancer Haven seem to have been working really hard to take their offering online and have groups and classes, counselling support etc though maybe not a moving on programme

Maggies centres are still open if you want to make an appointment at one - they usually run moving on courses and may be offering them online if you dig around their website

The useful thing about the moving on courses is that they often introduce you to groups and support in your area as well as explaining how your relationship with the breast clinic will be. You could check out your hospital website to see if there is any information there - or you can look at the In Your Area section of the main Macmillan site or the Cancer Care Map

There are also books - I was recommended  the Cancer Survivors Companion by Lucy Atkins which I found really useful.

i know your question wasn't really about any of that, but I think that the lack of communication can be a bit anxiety-inducing and all of the above can give you the tools to deal with the emotional side of it. My treatment finished a few years ago and I still belong to some groups that are cancer-specific. I find it comforting to have a support network who understand how I feel. I found those groups at a moving on event and I am so glad I did. I actually did my event a year after the end of my treatment because I hadn't been able to access one before that, so if it's something you feel you would benefit from, they might be an option for you once things are up and running again.

As for your actual question, yes I'm afraid that is normal, but absolutely contact them if you have any questions or concerns. You should be getting yearly mammograms for 5 years, so chase that if you don't get an appointment.

R