Imagination?

[Corfu7]

Hello sorry if this question seems daft but I went through BC while in lockdown. I had left Brest removed April 20 and right breast removed Jan 22. I finished all chemo and radiotherapy last year. Now I seem to be left on the shelf. I had no support during lockdown from health services nowhere to go ie Maggie centers group therapy’s . Now I had follow up consultation 2 months ago by phone. My imagination is running riot thinking is it gone or not? Can I ask if anyone else is like this? Or just me.

[Happyrosie]

Are you in the UK? If not, what I’m saying might not apply.You should be seeing your surgeon once every six months and of you have had chemo you should see an oncologist every six months too. You should have a breast cancer nurse assigned to you so phone her. Any if the British cancer charities such as MacMillan can advise you

[Corfu7 in reply to Happyrosie]

Thank you. I’m on uk. I have not seen my surgeon since January this year when I had my other breast removed. I had a telephone consultation a few months ago with oncology team and due another telephone consultation end of July. I have had no contact from breast cancer nurse service. I’ve managed to get an appoint with Gp for Thursday. I am really not sure about what I’m supposed to be checking or looking out for that’s why I’ve made the appointment. I just feel left/lost/disappointed.

[Happyrosie in reply to Corfu7]

This isn’t good, is it! Please phone MacMillan for advice and reassurance. They will explain how to self examine etc. They probably know more than your doc does. There are other breast cancer charities too. They are there for YOU.

[Happyrosie in reply to Corfu7]

I’ve replied but another thought. In my area, the breast cancer nurse won’t follow you up, you have to contact her. You should have been given contact details.

[mathematics]

Yes the support stopped from my Macmillan nurse when I was having the chemo and radiotherapy. She did not bother when these were finished either. I ended up getting very ill with a stomach abscess and ended up with another health board who were excellent doing my yearly reviews and checkups.

[DJK99 in reply to mathematics]

Hey there. That’s not right. You should be able to call your assigned macmillan nurse any time on the Open Access route ie your breast clinic for 5 yrs from your last diagnosis.

I had an incorrect (and v upsetting) letter from the “NHS Breast Hub” (different from the Breast Clinic I attend apparently) after I declined radiotherapy due to my many really rather difficult comorbidities which the whole team confirmed would mean I’d have severe short and long term side effects. The letter said, as I’d declined an appointment with my Oncologist (my MacMillan Nurse suggested this was no longer required in the month after the radiotherapy was due to end which i obviously agreed with so she cancelled it), then if I have any further needs I’d need a new referral from my GP. I was rather upset about this as had been told by my lovely MacMillan nurse I was on Open Access and could contact her or the nurses if she was away at any time if I have concerns - this for 5yrs from date of my recent recurrence. You should definitely have the same access so please call them and query what has happened. It must be a mistake.

I’m so sorry to hear you went through all your treatment without support from them. Really shocking to be honest.

Do update us on the outcome please.

Best wishes, D

[DJK99]

Hello Corfu7 - I replied to Mathematics below but it was meant for you both. Please take a look. I hope my response isn’t too late and things get sorted out for you. Best wishes, D