I was diagnosed with metastatic breast cancer in October last year and since then have been trying to deal with the impact. My primary St2 Grade 2 ER8 PR8 was diagnosed in 2002 and I had a mastectomy with latissimus dorsi reconstruction with implant followed by chemo but couldn't tolerate Taxoxifen so was on Megace for many years due to undiagnosed migraine. After 20 years and feeling well in myself I thought a bit of hip and sciatica like pain was the start of maybe needing a new hip, like a lot of folk my age. How wrong I was.
I retired several years ago but I'm still very active despite the diagnosis. It was because I was in too much pain to go trampolining with my grandchildren that sent me to the GP in the first place. That was last July and I was eventually sent for an X-ray in October. The pain has eased since then - I only ever need to take paracetamol now but my trampolining days are well and truly over.
I've come along to this forum because I'm finding it difficult to find anyone else who has had a Stage 4 diagnosis. I'm hoping that's because it's different to a primary diagnosis and treated more like a chronic disease, ie it's incurable but treatable, and those with it live with it and the treatment for many years without too many problems. Certainly the breast cancer support group gave me that impression. I don't feel that the local breast cancer support group is for me as I went to one meeting and it was mainly about problems associated with chemo, hair loss and side effects which I went through 20 years ago and don't need to be reminded of, lovely though the ladies were.
What I'd really appreciate is someone to chat to or meet up with who has Stage 4 breast cancer and living with it - just as I am. Is there anyone out there in that position? If there is I'd love to hear from you.
I've no idea if I've done this correctly so fingers are well and truly crossed.
Hi Coolnanny and welcome to the Online Community but I am sorry to hear about your diagnoses.
Navigating the cancer journey can be such a stressful and challenging time but getting support from others who are dealing with the ‘exact same' cancer type can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend consider joining and posting in our supportive Breast cancer and Breast, secondary cancer support groups. These are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To join a group click on the “Bold Links” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can put up your own post and introduce yourself to the group by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post. You can also scroll through other members posts and click “Reply” to get involved.
Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.
We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and run groups where you can meet up with others.
Do get back to me if you need further help navigating the community.
