Introducing Myself
livingthedream
Member Posts: 2 ✭
Hello Everyone. I have just joined this website and am hopeing to connect with others in a similar situation as me. I was diagnosed in June 2021 with ILC . I had 6 months of chemo, then a mastectomy and then 25 rounds of radiation. The cancer returned in October 23, and is now in my lymph nodes and hips. I have stage 4 metastatic breast cancer. I recently had a bone biopsy and was told I had TNBC, but at my last oncologist visit last week, I was told that it is not that as some of it is hormone receptive. It’s so confusing. Anyway, I look forward to connecting with others. I’m glad to have found this site.
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https://www.bcna.org.au/resource-hub/articles/types-of-breast-cancer/
The link above may give you some clarity and understanding to ask questions1 -
https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer
A group you may consider joining1 -
I am So sorry to see you joining us here @livingthedream xx Your diagnosis will have been a real shock to you - but the good news is that they have so many more options available now to help prevent mets progression (specially with immunotherapy.)
Out of interest - Is it the ILC that has returned, or is it a new one?
A good friend had mets return in her hip 5 years ago (18 years after her initial diagnosis) & she was able to have a hip replacement & is now out living a wonderful life in the gemfields of Qld, looking for emeralds & sapphires, to make into jewellery .... and she goes hunting for opals now too!! She makes me tired, just watching her travels - but she is having a great time xx
Feel free to check out this post, that has a lot of info on the forum & some topics that may interest you ....
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest
We have lots of 'off topic' threads, about our furkids, art & craft, our gardens .... jump onto any of them to check them out & add your own pics & story xx
Whack up any questions that you like & we'll do our best to give you an honest answer xx
take care & all the best with your ongoing appointments xx1 -
Thankyou Arpie for your message. It is a new cancer I have now. Started on chemo tablets a week and a half ago. I have been on a few other treatments, letrozole, fluvorescent shots ( or whatever they are called) and Ibrance .They were all affecting my kidneys and not stopping progression. My kidney function got down to 23 percent, but I had an appointment with kidney specialist today, and they have gone up to 40 percent, and he doesn’t want to see me again unless the oncologist refers me. Your friend sounds so inspirational ! Hopefully she stays well. I am not currently a candidate for immunotherapy, but that may change , as I was told that when I was told I had TNBC. Now they are saying I don’t have that as some of the cancer is hormone receptive. I go back to the oncologist on the 9th Dec and she will organise a scan to see what’s happening. The waiting for results is so hard as I’m sure you know. Anyway I just plod along and hope for the best. Hope you are doing well !1
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Hi @livingthedream, it was suggested above to join the mets group and you can do that if you wish. I have mets too, hormone positive. My original bc was 2020 but then mets in 2023.
It sure is a roller-coaster and it is good to connect here with others because having metastatic breast cancer can be very isolating. We sometimes get a bit lost in the see of pink.
Do you have support at home? Are you part of a support group or having counselling. All this can be helpful to you.
I hope they get your treatment sorted for you soon. I was diagnosed with mets last year and I found the first 6 months absolutely hell. It is extremely hard to process it all and all the changes that happen. It isn't just the diagnosis, it's your entire life, hence my comment about support.
There are some amazing treatments now and there are many mets patients living well as they can. I am currently on Fulvestrant injections and Ribociclib. Sometimes that's hard. When will you find out what your treatment is to be? I guess that's after your scan.
The waiting is so hard and scan anxiety is real. It is terribly hard. Keep busy, do things you enjoy. If the anxiety is getting too much see a gp and get something to take the edge off. Most people with mets get anxiety so it's ok to get help.
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Hi, I’m so sorry for your diagnosis.I hope you don’t mind me asking, but how did you discover you were originally facing ILC?I am 36 and given an indication of ILC however due to my remote location and the need for an MRI lead biopsy the breast surgeon wants me to wait 3 months to have another evaluation. However I’m increasing in symptoms- I don’t want to be dramatic but I am very stressed! Sorry- just hoping you can help🙂1
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@Brandrew10 I just responded to your other post. My ILC type was diagnosed from the pathology taken by needle biopsy. I had (unusually) also had a lump that triggered an initial ultrasound, that in turn led to a biopsy and several other tests.1
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Thanks Tri0
