I was diagnosed with MBC on 5 November, (first diagnosed with BC in August 2016). I have been told that it's detained in the sternum and no other areas of the body and it is thought that it was there when the breast tumour was removed in Sept 16. The suggestion is that I stay on Tamoxifen or as I am premenopausal that I have my ovaries removed and I would then have access to either Palbociclib or Ribociclib. I could have a monthly ovarian suppression injection rather than have them removed.I am currently looking into the options presented and will see the medical oncologist in two weeks time.I am just wondering if there are any others here on this network that have experienced the same thing?

I wanted to just pop in and say hello... I was diagnosed with mets in my sternum in 2005. I have always been in the public system and they have looked after me well. Mets in bone only still after nearly 15yrs. Have been on herceptin for all this time. Just wanted to let you all know that anything is possible.. there is always hope.. love to all <3

Hi @Georgie17, Sorry to hear your news and to have to welcome you to the MBC club. I was diagnosed almost 4 years ago. My mets were bone only, located in and around my hip. At that stage Ribociclib or Pablociclib were not available except on trial. So I immediately had my ovaries removed (very simple key whole surgery that only required an O/N in hospital) and then went on a trial with Fulvestrant +/- Ribociclib. They think I was in the trial arm without Ribociclib and I progressed during the two months I was on the trial and had to stop. I then had a mastectomy and have been on quite a few different drugs since. I am currently on a trial using Amebaciclib (similar to Ribociclib) and have been very stable for about 12 months now. If you decide to come of Tamoxifen, I would recommend having your ovaries removed - saves having to have more medication/injections (which is tiresome for me - I currently take 11 tablets/day and have a monthly injection). Women are having fabulous results with Ribociclib with the main side effect being low neutrophils. Amebaciclib doesn't have such a problem with low neutrophils, but causes horrible diarrhoea. Hence I taken anti-diarrhoea medication as well. Also, they may want you to go on a monthly injection of Denosumab. This is a relatively new drug that helps prevent bone loss (and in the case of damaged bone, helps repair the bone) and prevents bone breakage. I have been having this injection since diagnosis and the side effects are minimal (just feel really tired for about 3 days). Good luck with your decisions and here's to many years of living well (even though we have bone mets)!!! Lisa xxx

Hi @Georgie17 sorry your on this Roller Coaster im just going through the same process at the moment 3mm lesion on sternum a bigger one on the sacrum one of the drs mention the one on the sternum could be leftover tag from original tumour i was first diagnosed in nov16. But I’m post menopausal ive been switched from armidex to tamoxifen i see oncologist this thursday ive made a list of questions for her its been a long 6 weeks since i last saw her

@Georgie17 ii havent added up my costs but on no where near lisa’s amount yetthey will be reviewed at a future datejust on tamoxifen, oz mep for reflux, ant inflammatory and pain relief was on targin but that script is finishedblood test this week so we will seei just ask questions at each visit. ( go with my list and my 2nd set of ears)need her as my brain mush doesnt go away. These days. Good luck with your decision. I find it hard to decide things for myself i have to trust them to make the right ones for me.

Fortunately, my costs have been minimal to date. All of the drugs I have been on are either on the PBS or supplied by a pharmaceutical company by way of trial. The Amebaciclib I am on now is supplied as part of a trial. I am very lucky to have an oncologist who is an active, world renowned, clinical researcher, so if she can't get me access on a trial she will most likely will be able to get me compassionate access. The denosumab injection I have monthly is on the PBS and costs about $40/month. I had my ovaries removed privately, but the surgeon works in the public system as well and agreed to do it for me at public prices. He even organised for the anaesthestist to do the same! I used to feel bad if offered something for free, but have learned very quickly to accept the offer if made! It certainly makes things easier given that I am not working.

Recent MBC - sternum | BCNA Online Network

Georgie17
Member
6 years ago
Thanks @Lisa1407 and @cranky_granny for your replies.
I am in two minds about what to do and need to look further into it. I am not sure if I should tempt fate and go off Tamoxifen and try a new drug, considering I have been lucky with no side effects.
May I ask what you are looking at in the way of costs for these medications?
Lisa1407
Member
6 years ago
Hi @Georgie17, Sorry to hear your news and to have to welcome you to the MBC club. I was diagnosed almost 4 years ago. My mets were bone only, located in and around my hip. At that stage Ribociclib or Pablociclib were not available except on trial. So I immediately had my ovaries removed (very simple key whole surgery that only required an O/N in hospital) and then went on a trial with Fulvestrant +/- Ribociclib. They think I was in the trial arm without Ribociclib and I progressed during the two months I was on the trial and had to stop. I then had a mastectomy and have been on quite a few different drugs since. I am currently on a trial using Amebaciclib (similar to Ribociclib) and have been very stable for about 12 months now. If you decide to come of Tamoxifen, I would recommend having your ovaries removed - saves having to have more medication/injections (which is tiresome for me - I currently take 11 tablets/day and have a monthly injection). Women are having fabulous results with Ribociclib with the main side effect being low neutrophils. Amebaciclib doesn't have such a problem with low neutrophils, but causes horrible diarrhoea. Hence I taken anti-diarrhoea medication as well. Also, they may want you to go on a monthly injection of Denosumab. This is a relatively new drug that helps prevent bone loss (and in the case of damaged bone, helps repair the bone) and prevents bone breakage. I have been having this injection since diagnosis and the side effects are minimal (just feel really tired for about 3 days). Good luck with your decisions and here's to many years of living well (even though we have bone mets)!!! Lisa xxx
cranky_granny
Member
6 years ago
Hi @Georgie17 sorry your on this Roller Coaster im just going through the same process at the moment 3mm lesion on sternum a bigger one on the sacrum
one of the drs mention the one on the sternum could be leftover tag from original tumour
i was first diagnosed in nov16. But I’m post menopausal ive been switched from armidex to tamoxifen
i see oncologist this thursday ive made a list of questions for her its been a long 6 weeks since i last saw her

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