HER2 Negative & Bone Mets

Living with secondary breast cancer Supporting each other and sharing experiences
1

Good morning everyone.

Hoping you are all very well.

I just to give a brief outline on my Mums diagnosis and to see if there is anyone in a similar position or/and can offer any advice or support in any way.

Mum was diagnosed with HER2- negative, hormone positive breast cancer in April 2020. Masectomy and lymph node clearance 2 weeks later, lump was approx 4cm (invasive, high grade 3) and 1 out of 16 lymph nodes had just a few cancer cells.

Op went well with clear margins.

Bone Scan in May showed arthritic changes in various places but no evidence of spread, ct scan was clear apart from some inflammation in her lungs which they wanted to check 3 months later.

She started taking anastrozole in June and Bone medication in July as well as having 5 days of radio and no chemo.

August this year she had her repeat CT which showed lungs now normal and organs clear, but, some incidental inderminate areas on her backbone /spine which resembled a scattering.

She has no symptoms.

This was discussed at a MDT meeting and they asked for an MRI which confirmed what they think is cancer deposits/diffusion on her spine but not near any nerve endings.

They previously advised this was likely arthritis (she does have an inflamatory disease - Behcets) they said didnt look typical of spread.

This was all over the phone by her surgeon.

Oncologist spoke to her this past Friday who still said for HER2 negative to behave in this way is highly unusal and he has requested a further bone scan and regular blood tests. He also said the blood tests she had recently show generally good health but found levels of protein which indicate cancer is active but he also said this was good as allows him to track it…

Bone marrow and everything else is fine.

He went on to say that he thinks the hormone inhibitors are working as its made the cancer show up clearer and wants to keep her on the same meds for a while so he can be sure they are working, if not then he will switch the meds.

He also suggested sometimes the hormone medications dont work , has anyone else had this response?

His final thoughts are that they probablg are working as its a coincidence the scans before and after (3 months) taking the meds, show a change of sorts.

Still early days and Mum and all of us are shocked and devatstated that after thinking she had beaten it are now back at the beginning with much more uncertainty.

Thank you for reading!

Danny xx

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Hi danny2020

My diagnosis was very similar to your mum’s, I was diagnosed in may with hormone positive her2 negative, 3.2cm grade 3 tumour. I however had extensive lymph node involvement, 10/11 positive. I had surgery to remove the tumour and nodes. A subsequent bone scan was clear however my CT scan showed 2 lung nodules which they said could be something or nothing and scan was to be repeated in 3 months. I had my repeat scan end of September, and was shocked to learn that although the lung nodules had stayed the same, I now have cancer in my spine and left hip, bearing in mind this happened in the middle of chemo treatment for primary. I asked was the cancer extensive and my oncologist replied no, the word she used was sclerotic. My treatment plan changed immediately and I’m now on letrozole, palbociclib and bone injections. I’m just trying to stay positive and tell myself that although yes it has spread, it’s early spread as my bone scan was clear in June. I’m not sure any of this will help your situation with your mum but I just wanted to share my story to let you know you aren’t alone xx 

Jools

3

Hi
It can sometimes be difficult to determine between bone mets and other degenerative disease but I expect from what your oncologist has said they do think it’s bone mets. A bone scan will help determine this. It isn’t unusual to be diagnosed with primary breast cancer and very soon after (or even at the same time) secondary breast cancer, sometimes it just shows up on a routine scan and quite often the patient doesn’t know the bone mets exist if they have no symptoms. The continuing treatment will be systemic which mean  it will treat the whole body and the only extra treatment I think your Mum would have would be a bone strengthener. Hormone treatments generally work well, given the number of people on them who are on this forum, but occasionally they may not be effective. A scan after 3 months of treatment is usual and would determine if the treatment is effective. If it’s not there are plenty of different ones available for hormone positive, HER2 negative secondary BC. Hopefully this won’t be the case and your Mum will adjust to living with secondary BC and get a long time on this, her first treatment.
Nicky