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Hello

4 REPLIES 4
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Community Champion

Re: Hello

Hi again 

Sorry if it sounded like I was saying you need to use a generic names for the treatments it was just if you wanted to search on here for certain terms or names used you may not find many references if you use the licensed name. Also I believe in the USA you can get a liquid biopsy done as more of a routine than we can here in the UK? That will give more information about your particular BC in terms of genetic mutations etc, I think biopsies done on solid tumours still only check for a broad band of receptors etc. I only know this as in the UK I have had a liquid biopsy done (in essence a particular blood test rather than anything this unusual!) which has picked up certain gene mutations which have not been picked up previously on a solid tumour biopsy. Treatments in the USA are generally ahead of us (in the UK) so it could be that a different treatment would be available to you if certain mutations were found. The main reason for this is that we have a national health service which is ‘free’ for all (we do fund it through taxes) and therefore a cost effectiveness has to be determined for each type of treatment that we can access. Newer treatments cost more and therefore aren’t readily available until the cost price of the drug comes down enough.  
Nicky x

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Member

Re: Hello

Thanks for the warm welcome. 🙂 I am from the US. Haven’t found very many forums from there, so I thought I’d try other ones. I’m ok with responses taking a little while. I was just going by the easier to write names, but if I’m looking for them I can go with either name for meds. Interestingly, my oncologist just ordered another genetics test to be done on the biopsy they took of one of the tumors. He said it will help with seeing what treatment will work if my current plan doesn’t. Not sure what that test is called. It could be narrowing down even further my specific type of breast cancer. I’m a bit more hopeful about it, knowing that there are many treatments for it out there. 

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Community Champion

Re: Hello

Hi Anzu,

Welcome to the forum, though I'm sorry you find yourself here in the first place!  Thank you for sharing your story, I'm sorry to hear what a difficult time its been for you and your family.  Its such a lot to deal with all at once.

I am glad to meet someone of a similar age.  I was 38 when I first got diagnosed with a primary (I'm 40 now), same type as you and it was around 12 months later my medical team realised I'd already had mets in spine that they hadn't picked up at primary diagnosis.  It sounds very lucky (in a way!) that you broke your shoulder so the mets were discovered sooner rather than later.  I hope you have a good treatment plan in place and make a good recovery.

Its amazing to hear about your accomplishments and interests!  I am also very much into learning more about different cultures and languages and love reading.  Perhaps we should start a book club on here, it gives us something else to think about 😁

If you want to chat about anything any time or ask questions or just get support, you're definitely in the right place!  We have a wonderful community here, personally I don't know where I would be right now without it ❤️😊

Highlighted
Community Champion

Re: Hello

Hi and welcome to the forum

Im guessing from the fact you wrote ‘Mom’ that you are in the states or Canada? This forum is based in the UK but everyone is welcome from wherever they are and we there are other users from over the pond on here! The only difference will be is that we will probably respond in the middle of your night and vice versa. The other difference, which I’ve noticed, is that in the UK we often use the generic name of a drug rather than the manufacturers name. So you may need to look on threads about anastrozole (Arimidex) or  palbociclib (Ibrance) for other users on here having the same treatment as you.

You have had a difficult time family wise with this awful disease but it will make you aware to be extra vigilant with any changes. I expect some time in the future other genetic mutations will be discovered that link all your family cancers together, as yet only the BRCA1 and 2 are identified as such.

There are lots of treatments available for your type of cancer, it is the same type as I have and many others on this forum have so there will be lots of users who can share their experiences of the treatments you are on. To add comments or ask a question to any other thread on here you just need to ‘Reply’ to the last comment or to an earlier comment, your post will be added as the next one. Be careful how much private information you give as well, this is an open forum and can be read by anyone, although only added to if you are logged on.

Good luck with your treatment

Nicky x

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Member

Hello

Hi! I’m new to this forum, so I thought I’d introduce myself and tell my story so far. I was diagnosed with metastatic breast cancer in April 2020. Didn’t have a cancer diagnosis before that. Still feel pretty new to everything. Mine’s er+, pr+, and her2-. Mets are widespread throughout my skeleton, and recently found out that it’s spread to my skin. My mom was diagnosed with breast cancer when she was 47, and metastatic bc at 54. Hers was not as aggressive as mine is.  She passed away in 2012 from an abdominal tumor not related to her bc. So, I have some experience with watching her deal with it, but it’s different going through it. Plus, I’m 35, so much younger than she was even with her first diagnosis. Her mother and grandma had it as well, but later in life. One of my aunts on that side, that’s still around, also had it. Oddly I’ve tested negative with the genetic testing they’ve done so far. I had some radiation, but couldn’t finish the full course of treatment. I had a radical hysterectomy recently. I’m on Ibrance and arimidex. I broke my right shoulder back in March, and without the x-rays they took they wouldn’t have found the mets or cancer. I’ve been in palliative care since April. It’s difficult to do things while still recovering from the broken shoulder and other cancer stuff. They’ve helped me a lot.


I’m a self-published author (have 5 books out), clarinetist, love learning about other cultures, languages, horror/mystery books/shows/movies, and more. I have 2 cats and live with my parent. All of which have helped me tremendously.