ER+/PR+, HER2-, Stage1B (+sentinel node) - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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ER+/PR+, HER2-, Stage1B (+sentinel node)

KB1968 profile image
6 Replies

Hi

Diagnosed in March 2022 - partial mastectomy and 33 doses/days radiation now on Letrozole.

Anyone with similar diagnosis and treatment have any advice on supplements or what to expect? Reading some posts where Letrozole "stopped working". Any information is helpful.

Thanks so much and God bless

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KB1968 profile image
KB1968
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6 Replies
Hazelgreen profile image
Hazelgreen

Hello,

Given that you are stage 1B, it sounds like you have early breast cancer rather than metastatic breast cancer. Everyone on this site had their early breast cancer return, sometimes after more than a decade since they were first diagnosed.

You may find the other Health Unlocked site for breast cancer more helpful. It is called "SHARE Breast Cancer Support". There is also a site named "My Breast Cancer Community".

Best Wishes,

Cindy

MaryCos profile image
MaryCos in reply to Hazelgreen

Glad you pointed her in the right direction. Just some feedback that I think is important. I was diagnosed de novo MBC. No previous cancer diagnosis of any kind. So, let's keep in mind that 5-10% of us never had early stage BC. Beyond that, carry on! 😁

PJBinMI profile image
PJBinMI

I was diagnosed with bc on 3/1/2004, and by the end of that month "extensive bone mets" were found, plus I celebrated my 58th birthday. Lobular bc, E+, P+, her2neu -. Stage IV, "metastatic," and "terminal!" I had a partial mastectomy, no radiation, and Letrozole was my first line treatment, along with Zometa for my bones. That was pretty standard treatment then and I got almost five years from the Letrozole, followed by Faslodex, with worked for over 9 years. Now I've been on Exemestane for about four years. One of my first ways of coping with this MBC diagnosis was to learn all I could! Bought 3 books about bc, including Dr. Susan Love's book. Nowhere near the on-line resources we have today. The cancer center where I'm treated had an annual Oct. weekend bc retreat where I learned about a local (50 miles from home, tho) self led mbc group that met every month. That group meant alot to me as long as it lasted! (several years) I also attended several bc and mbc conferences. I met alot of women who lived a long time with MBC, and many got even longer from Faslodex than they did from Letrozole.

You have much to be hopeful about! Especially with such an early diagnosis. I have two suggestions for you. 1) If you have not been seen by an onc who specializes in BC, and sees only BC patients, I would recommend seeing one, particularly at one of the "Comprehensive Cancer Centers." Those are the top tier of cancer centers in the US, most affiliated with a medical school. They are listed on the website of the National Cancer Institute and I think there is a link under "Useful Resources" a bit above and to the right of this screen.

2) Belleruth Naperstek, a psychologist specializing in the mind -body connection, has created many audios about living with cancer and other challenges. I can never remember the exact website name, but it's either healthjourney.com or healthjouurneys.com. Back in 2004, I bought several of her audios on disk and the products have changed over time to meet current audio standards. She has a very soothing voice, and just thinking about that brings my blood pressure down! Really!!

mariootsi profile image
mariootsi

After my initial diagnosis, when I went into remission after chemo, surgery and radiation, I got 4 years out of letrozole. Then it stopped working and I was diagnosised with mbc. Eventually, every treatment stops working, but there are many more to try!

Lavern2 profile image
Lavern2

Hi. I had similar problems i was diagnosed with stage 1B cancer in February. Was put on Letrozole had a Lumpectomey and 8 lymphnodes removed in June . Had trouble with fluid because the plastic surgeon didn't put drains in had to Reopen my breast and let it drain. Now I have had 8 radiation treatments 12 more to go. I be light headed after treatments and just tired I will fall asleep if I'm not moving. Strange feeling. I also had a Zometa infusion in June. I don't know if that has anything to do with my hip and joints hurting . Dealing with cancer is not easy. I also have Lympphedma in my arm and hand I don't know what is going to be done about it. I pray for all that has to deal with Cancer of any kind . You are in my prayers 🙏.

kokopelli2017 profile image
kokopelli2017

hi Lavern2.

sorry for your struggles. most likely the pain in your hip and joints is a side effect of the letrozole...very common but not pleasant. and radiation wipes you out....no wonder you are tired! as for the Lymphedema in your arm......can you ask your oncologist for a referral to a lymphedema clinic. they do exist. if there is not one in your area....at least a referral to PT for the lymphedema. and they have special 'sleeves' to wear on that arm to help keep the swelling at bay. your oncologist should know about this. I get so annoyed when they are not more proactive.

best wishes.....

carole XO

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