thanks cath62. 🤗

Thanks @Afraser

Hi @Beb46, glad to hear you are going well. That's awesome. I am really sorry to hear about your daughter. Such a shock for you, not to mention how terrible for your daughter.  Just wanted to send a big virtual hug and say I will send some positive thoughts your way. I hope they work something out for her. 🌷

thanks so much for those links Arpie . I will check them out. Daughter has yet to see surgeon and oncologist so immunotherapy or other treatment hasn’t been discussed as yet . Hopefully we will have more answers this week .
thanks🤗

OMG .... I was just thinking WELL DONE on being on Exemestane with no real side effects, then I read the next bit. :(

I am SO sorry to hear of your daughter's diagnosis.  Has Immunotherapy been raised as a form of treatment?  It is cutting edge, personalised treatment. 

There have been some posts on BCNA Metaplastic Breast Cancer ... @Michelle_R - can you help @Beb46

Please check this link:

https://onlinenetwork.bcna.org.au/search?Search=Metaplastic+Breast+Cancer

Personally, I've not heard of that particular Breast Cancer before, but below is a link to An Qld researcher in Metaplastic Breast Cancer. 

Research related to breast cancer classification and implications for clinical practice

Researcher: Dr. Sunil Lakhani, University of Queensland

Dr Lakhani recently published practice-changing findings that contributed to a new classification of a rare breast cancer, called Metaplastic Breast Cancer.

https://nbcf.org.au/news/new-guidelines-for-pathologists-to-identify-the-most-aggressive-forms-of-breast-cancer/

And an overseas link to 

Metaplastic Breast Cancer:

https://www.mpbcalliance.org/metaplastic-breast-cancer/

I hope you can get some answers that helps xx

Wishing you and your daughter all the best xxx 

8 months after finishing my treatment for Invasive lobular cancer and everything going well and on exemestane with no real side effects then yesterday my 51 year old daughter is diagnosed with metaplastic breast cancer grade 3 . Such a kick in the guts as this is a very rare breast cancer …less than 2% apparently.. and very aggressive, and doesn’t respond well to chemo, quick to metastasise . Has to see surgeon this week and probable mastectomy.   Can’t find any information on bcna about this and most Australian websites have limited information if any.  Is there anyone on this site that has this type of cancer and can ease my concerns on survival etc. thanks 

 Hi @Beb46 ... I am so pleased you weren’t impacted by the cyclone and that you have good family and friend support!

yes, I am on AIs .... I am currently on Arimidex (2 years now) with relatively few side effects, but definitely notice that my whole body is stiffer and that I am a lot slower (I am 68) ... so am taking some “magic oil” that is helping remove the “edge”!  Prior to that, I started on Letrozole for a short while and had bad side effects, so swapped to Exemestane, lasting 6 months on it.  Not everyone gets bad side effects tho, so it is well worth giving it a go with an open mind, and fingers crossed you don’t get them!!

Yep, one day at a time, that’s the best way to go!  Take care, all the best xx

Hi @Beb46

Good to hear you are travelling well. I’ve been on hormone blockers (Letrozole) for eight years. The two side effects I get (no aches or joint pain at all) are vaginal atrophy and bone thinning. As both can naturally occur as one gets older, it’s worth a) getting a bone scan before you start so you know what you are dealing with and monitoring any decline - I get a yearly scan (so far so good, but my bone density was very good to start with at 68, so I can afford to lose a bit) and b) don’t let anyone tell you that vaginal dryness occurring suddenly is normal! It may be accentuated by ageing but mine started because of Letrozole! Good news is that oestrogen cream can help - it took me a long time to accept, as it sounds completely nuts, but tiny doses, particularly when your natural oestrogen is declining anyway, can improve things significantly and safely. I’ll be delighted to stop Letrozole but happy that I have done everything I can to not have cancer again. Otherwise, I live perfectly normally and actively (finally retired at 75). Best wishes. 

Thanks Arpie.  I have heard a few women say breast screen failed to pick up their BC . My  surgeon said they did a good job picking it up as it was so small . I am in very good spirits and am back doing most things apart from lifting anything too heavy. My grandsons came and mowed and whipper snipped for me on the weekend before the expected arrival of cyclone Kimi which in the end didn’t eventuate. I have a very good friend network, plus great neighbours who are much younger and also my daughter and son and their families are here as well. I have put my volunteering on hold until after my radiation treatment and also was advised to give agua aerobics a miss  until then as well.