HER2 + ogliometastatic - spine and hip

Hi Cat,  Sorry to hear about your diagnosis.  My understanding is that oligometastatic cancer is when it has spread to fewer than 5 sites.  I think that SABR radiotherapy is available on NHS for primary cancer patients but not for secondary cancer.  I have secondary breast cancer with bone mets in pelvis, ribs, spine and skull and this has never been mentioned to me.  I think it is because it is wide spread.  It really doesn't seem fair that this treatment is available to some but not us with secondary cancer but as you say it all boils down to money.  Good luck with your Gofundme.

Hi,

yes i am currently fighting this decision, my MP is now involved. I am having an MRI today to check my spine and see if it is actually in my hip, i have osteoarthritis in it and it may be that that’s glowing from the PET scan, I’m hoping not. I was originally told it was in my liver but the PET scan showed not, so I spent 4 weeks thinking it was before I was told, happy but then they told me about my spine and hip. It’s been a mess tbh, and all the whole time is ticking. I know everyone complains about the waiting, sometimes I just feel like a number not a person.

Good luck and love to you with yours, Have you started treatment yet? What are you having? 

Beth xx

Hi Beth good luck with your MRI today.  I know what you mean about the waiting and it is extremely stressful.  I had breast cancer 12 years ago and had op, chemo, radiotherapy and tamoxifen.  Went to doctor last year with pain in hip and back.  Did X-ray and they found 2 bone lesions, doctor told me there was nothing to worry about.  They just left it, went to physio and she sent me for MRI by then they found it was secondary cancer in most of my bones.  I blame the doctor who ignored it.  Anyway it sounds like you are in a mess too.  I am on palliative treatment which seems to be working to keep the cancer stable.  Good luck please keep in touch.

Lee x

Thank you Lee, yes do keep in touch, we are in similar situations. 
xxxxxx

Hi,

How are you doing?

They decided it’s not in my hip and I can’t have SABR because it’s now in three of my vertebrae, good news (but very scary) chemo starts next week at last, only 9 weeks since being diagnosed, so long a wait. Having herceptin and perjeta as well so fingers crossed the side effects aren’t too horrific, every 3 weeks for 6 rounds. I’m very worried about it all but know it’s got to be done.
Thinking about you and hoping you are ok xx

Hi Beth,  good news not in your hip.  What chemo are you having.  I haven't been offered chemo this time.  I am on targeted therapy.  I don't know why everyone has different treatment, how do they decide it?  I really hope your side effects are manageable.  I found that keeping to my normal routine (as much as possible) helped me through chemo.  Even now I try and keep to normal routine other than having to give up work.  Do you have a lot of back pain, I had radiotherapy for one of the tumors on my spine and it seemed to help with the pain.  Now the pain is lower down.  Anyway I am wishing you luck for next week.  Big hugs.

Lee x

Hi Lee,

my chemo is Docetaxel, targeted immunotherapy is Herceptin and Perjeta with Denosumab to protect my bones, all once every three weeks for 4-6 rounds depending on how well I cope with the side effects.

I have mild pain around the area of the tumours in my neck but other than that I’m lucky. 
Yes it is strange how it’s different for everyone, my pathway changed too it was once every three weeks for 4 then once a week for 3 months, now it’s only 18 weeks in total. No idea how they decide, maybe type, speed of spread, no idea but I’m going to be asking lots of questions on Monday.

Best wishes as always and stay strong.

Beth xxx