Is there anyone that had estrogen positive cancer, without use of AI?

Posted by tygerrag2 @tygerrag2, Jul 14, 2022

Is there anyone with stage 1 breast cancer, estrogen positive that had a lumpectomy followed by radiation without any other treatment and has remained cancer free?

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I did forgo also and now six years later it recurred in lymph node on same side....now called advance. ca27-29 only 9. Month after biopsy with !metal clip, I am suffering with much pain there, at biopsy site.....face scans and surgery.??

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@sequoia

@auntieoakley , thank you for your comment. I was prescribed Anastrozole and took it for 32 month (2 & 3/4 yrs) At around 2 years I started having hip pain , debilitating pain & I felt about 80+ yrs old - I’m 69. Very active & it was affecting my quality of life from morning to night. I could barely get in and out of my car. I did PT, had X-rays, exercised through the pain the best I could. Walking which is always been my saving Grace , was too painful for me to do. I stopped Anastrozole mid April. My hip pain is gone. I feel like my old 😊 self again. It is a very personal decision to take or not take med. it’s not an easy decision. My hubby and I discussed at length. Research and read studies etc as well as posts on this forum. Both sides w/ an open mind. I feel it is a good decision For Me.
I will see my oncologist in August and will let him know my decision. I am pretty sure he will be ‘upset’ w/ me. It is his job, ‘blinders on’ , to keep me cancer free or lessen the chance of reoccurring cancer. I understand that, but he needs to treat each patient as an individual, and I don’t believe he is. We will see.
I so appreciate the comments and caring posts that’s everyone offers. We are in this together and can learn so much from each other. ❤️

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I had bad joint pain from als...tried three, and wanted quality of life, no pain, so did not take after two days of each and cancer is back in lymph node in armpit after six years.

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@auntieoakley

I have a difficult time on the endocrine therapy threads because of a few members who I feel, like to pontificate on many things they truly have no personal experience with.
Here is my personal experience with hormone therapy. I took it, I took all of it I could take, until the doctors cut me off. I am glad I took it, and I would do it again. 😂
On the serious side. It wasn’t always pleasant, and certainly not always easy, but I said, I never wanted to go through again, what I went through the first time, coming out of chemo at 6ft tall and 108 pounds.
Now that the dreaded recurrence we all fear, happened anyway. I am honestly glad I don’t have to look back and wonder if I did everything I could to prevent it.
Life isn’t always easy or pleasant, but if I am lucky enough to come out the other side with some optimism for the future, then I feel it was worth it.

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I have recently had recurrence.... What treatment is given? If not spread then surgery. Dissection.... If spread, oncologist says Ibrance , and fulvestrant shot once month dread this as did not have chemo or radiation nor take als...So sailed thru lumpectomy.. No pain am almost 86 now....six years out. Any help or experience with same treatment I face so appreciated.

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@sequoia

@auntieoakley , thank you for your comment. I was prescribed Anastrozole and took it for 32 month (2 & 3/4 yrs) At around 2 years I started having hip pain , debilitating pain & I felt about 80+ yrs old - I’m 69. Very active & it was affecting my quality of life from morning to night. I could barely get in and out of my car. I did PT, had X-rays, exercised through the pain the best I could. Walking which is always been my saving Grace , was too painful for me to do. I stopped Anastrozole mid April. My hip pain is gone. I feel like my old 😊 self again. It is a very personal decision to take or not take med. it’s not an easy decision. My hubby and I discussed at length. Research and read studies etc as well as posts on this forum. Both sides w/ an open mind. I feel it is a good decision For Me.
I will see my oncologist in August and will let him know my decision. I am pretty sure he will be ‘upset’ w/ me. It is his job, ‘blinders on’ , to keep me cancer free or lessen the chance of reoccurring cancer. I understand that, but he needs to treat each patient as an individual, and I don’t believe he is. We will see.
I so appreciate the comments and caring posts that’s everyone offers. We are in this together and can learn so much from each other. ❤️

Jump to this post

@auntieoakley @sequoia
Good conversation from both of you...I appreciate all your information. I tried all three AIs and finally was able to keep on the exemestane 25 mg now for about 3 1/2 years but side effects were getting me down. My oncologist gave me a 2-month vacation from it and then I agreed to go back on, but at half dose. She told me there are no studies for being on half dose, but half dose was better than none. Since then, I'm starting to use whole dose on Sundays and now Wednesdays and that's probably where I'll stay at this time. If anyone has more information on half dose, I'd sure enjoy reading about it.

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@cctoo

I had bad joint pain from als...tried three, and wanted quality of life, no pain, so did not take after two days of each and cancer is back in lymph node in armpit after six years.

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@cctoo what AIs did you try? What type of cancer and surgery? The AIs affected you very quickly. 😢. Every body is different and reacts differently. I pray that all goes well for you. God Bless. Please let us know how you are doing. We are here for you.

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@cctoo

I did forgo also and now six years later it recurred in lymph node on same side....now called advance. ca27-29 only 9. Month after biopsy with !metal clip, I am suffering with much pain there, at biopsy site.....face scans and surgery.??

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What stage were you initially? So sorry about recurrence .

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@trixie1313

@auntieoakley @sequoia
Good conversation from both of you...I appreciate all your information. I tried all three AIs and finally was able to keep on the exemestane 25 mg now for about 3 1/2 years but side effects were getting me down. My oncologist gave me a 2-month vacation from it and then I agreed to go back on, but at half dose. She told me there are no studies for being on half dose, but half dose was better than none. Since then, I'm starting to use whole dose on Sundays and now Wednesdays and that's probably where I'll stay at this time. If anyone has more information on half dose, I'd sure enjoy reading about it.

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It does seem like any reduction in the hormones that encourage our cancers would be beneficial. I applaud your tenacity. As @windyshores said, I think some side effects are from the loss of hormone and may be the same. Like any strong drugs there is a risk of other side effects that are just too painful to sustain. I am happy you are getting through it and I know your story will help others that are struggling with it. Thank you for sharing your journey.
May I ask how far out from original diagnosis you are?

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@auntieoakley

It does seem like any reduction in the hormones that encourage our cancers would be beneficial. I applaud your tenacity. As @windyshores said, I think some side effects are from the loss of hormone and may be the same. Like any strong drugs there is a risk of other side effects that are just too painful to sustain. I am happy you are getting through it and I know your story will help others that are struggling with it. Thank you for sharing your journey.
May I ask how far out from original diagnosis you are?

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@auntieoakley
I'm 4 years out from diagnosis, original tumor was invasive ductal and second one at second surgery was neuroendocrine. I had uterus and ovaries removed at age 44 and am now 70, but even with ovaries gone my ER+ was 95%! I also had a thalamic stroke affecting my right arm and right leg two years ago so cannot go on Tamoxifen. God provides us many adventures...the trick is to keep going!

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@cctoo

I have recently had recurrence.... What treatment is given? If not spread then surgery. Dissection.... If spread, oncologist says Ibrance , and fulvestrant shot once month dread this as did not have chemo or radiation nor take als...So sailed thru lumpectomy.. No pain am almost 86 now....six years out. Any help or experience with same treatment I face so appreciated.

Jump to this post

I cannot tell you how heartbreaking it is to hear that this has come back. The biopsies under the arm are the pits! (Pun intended) Because you can’t keep your arm still, and that skin has to move with it. Your next treatment options will be dictated by what your particular cancer looks like. You might want to check out this thread that has other folks on Ibrance and letrozole, I bet there will be some common ground there.
https://connect.mayoclinic.org/discussion/ibrance-and-letrozole-newly-diagnosed-treatment/
I would love to hear back from you, when do you hope to find out about the spread beyond the nodes? Did your doctor order a PET scan?

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@auntieoakley

I have a difficult time on the endocrine therapy threads because of a few members who I feel, like to pontificate on many things they truly have no personal experience with.
Here is my personal experience with hormone therapy. I took it, I took all of it I could take, until the doctors cut me off. I am glad I took it, and I would do it again. 😂
On the serious side. It wasn’t always pleasant, and certainly not always easy, but I said, I never wanted to go through again, what I went through the first time, coming out of chemo at 6ft tall and 108 pounds.
Now that the dreaded recurrence we all fear, happened anyway. I am honestly glad I don’t have to look back and wonder if I did everything I could to prevent it.
Life isn’t always easy or pleasant, but if I am lucky enough to come out the other side with some optimism for the future, then I feel it was worth it.

Jump to this post

Do the doctors have any idea of how or why the dreaded recurrence occurred anyway despite your doing everything medical science could throw at the original cancer?

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