Is this really the norm for standard of care?

Not long ago I was diagnosed with secondary breast cancer and due to the retirement of my oncologist was transferred from one hospital to another.

I had my first appointment last week and was astounded when I was not only seen by a member of a team who is not an oncologist but also told that I would not get to see the oncologist ‘ever’ and was unlikely to see that same team member next time as they just pick up the next set of notes on the pile.

The woman I saw didn’t know when I had had my primary cancer, what grade it was and what treatment I had received and asked me what meds I was on now. Surely that is in my notes.

I am just totally at a loss and worried sick that nobody knows let alone cares what is happening to me and I’m also to scared to make a fuss.

Is this what it’s like now across the country you just never see an oncologist. I can maybe understand that the oncologist is too busy to see patients but surely they could assign one member of their team to care for you so you could have a constant of care.

Yvonne x

Hi Yvonne

I can understand your concern. You want to have someone there who knows you and is keeping an eye on your health.

I had a primary diagnosis a couple of years ago so slightly different scenario from you and now I alternate between seeing the surgeon and the Oncologist (often one of his team) every 4 months as I’ve had quite a few complications from the treatment. I’ve seen quite a few different people from the Oncology team but always see my consultant surgeon - bizarre.

While I doubt it is unusual to see one of the team, I would in your position expect to be reviewed at least once a year by the Oncologist. When it comes to booking your next appointment you can ask to specificaly see the Oncologist (at least in our hospital although its a well kept secret).

Whether what you’re experiencing is the norm, I don’t know. I would strongly recommend ringing the helpline to discuss with them. They are a mine of information.
You could of course change hospitals but there’s no point doing that if you’re going to experience the same elsewhere.

There are times though when seeing other members of the team can be a good thing. I saw a doctor last time who was clearly willing to spend more time with me and go through the pros and cons of my medication and the stats. My appointments with the Oncologist all tend to feel a bit rushed.
If the team had any strong concerns then they would also speak to the Oncologist. If you have any particular concerns then the thing to do would be to ring his secretary to arrange an appointment with him.

Hopefully you’ll get some responses from other women which my help you to gauge what is usual practice.
take care and good wishes to you, Elinda x

Hi Yvonne, no that’s not the norm although I’m sure care varies widely from hospital to hospital. I always see my Oncologist and both he and his small team now know me very well…I think this has helped me a lot as I’m able to discuss treatments and they know my feelings on still wanting, at the moment, pro-active treatment for my secondaries.
Please DON’T be scared in bringing your concerns up…it’s not ‘making a fuss’ it’s being an informed and assertive patient. Best Wishes.

Hi Yvonne,

I was disgusted to hear that you don’t even see someone from the onology team. Surely the whole idea is to see someone who specialises in the cancer field to know what is the appropriate treatment for you. Are they going to re refer you when there’s a problem? You need continuity of care so there is soemone that knows your history.
Its extremely worrying when they don’t even know what treatment you are on. I think you should write down all your concerns and ask what pathway they would take if there was a problem.
I do think you need to be proactive in your own care and don’t be afraid to voice you concerns and worries. for goodness sake they are health care professional who are there to guide through this rotten path that no chooses to be on.
I know that its easier said then done and I just feel there doesn’t seem to be a standard of care even through there is one. it seems very regional.
breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/standards-care/secondary-breast-cancer
Here the link from this web site hpe this helps. I feel there are worrying times ahead for us.
Wishing the very best of luck with you journey and let me know how you get on.
sorry for th rant.
Love
Chris x

Can’t get my head to believe what you’ve been told! If I were you I’d phone your breast care nurses and double check or ask for help. I find playing dumb works most of the time “I’m sure I’ve understood this wrong, but what I heard was…” Good grief! There are national pathways and national standards of care ESPECIALLY for cancer patients. Each hospital is part of a cancer network… there are places you can go with this… trouble is, you shouldn’t have to! Good luck! Jane

Hi I changed hos my own choice and I don’t see the same person every time but it’s a busy hos and I now know most of the team and they know me it will settle down and they will know what y on and who u are I don’t regret changing my hos wasn’t v gd I know u haven’t changed hos but it will be ok try not to worry