1. < Breast Cancer

DCIS do I really need an AI?

Posted by marylynr @marylynr, Jan 29 6:40pm

Non-invasive DCIS grade 2 lumpectomy clear margins 3 mm in size. Decision RT says no- radiation side effects outweigh the benefits. Do I really need an AI? Does anybody know the recurrence rates if I do nothing further? I can’t seem to get a straight answer. I have osteopenia so I’m not too thrilled about going on an AI and then of course the other side effects like cardiac, bone pain hair loss neurological issues etc. Everyone keeps saying you don’t have cancer its just DCIS low chance of recurring so why the treatment overkill? The more I read the more confused I get. I’m 64 and thought I was in perfect health until I had the dexa and mammo. Any thoughts would be appreciated!

Interested in more discussions like this? Go to the Breast Cancer Support Group.

whr | @whr | May 3 8:21am
In reply to @mimzy "I had a 7 mm, stage 1, negative nodes (IDC) removed via lumpectomy. I am just..." + (show)
@mimzy

I had a 7 mm, stage 1, negative nodes (IDC) removed via lumpectomy. I am just finishing radiation therapy. Oncotype score is 10. I’m scared to take the AIs due to my own history and close family history of cardiac issues, kidney issues, and pre-existing joint pain from arthritis. Docs are encouraging AI Anyone else experience this? Thank you in advance

Jump to this post

I took it for 18 months until I could barely get out of bed. My cancer has returned and after a bone density test have osteoporosis. I won't take them again.

REPLY
1 reply
mimzy | @mimzy | May 3 8:38am
In reply to @whr "I took it for 18 months until I could barely get out of bed. My cancer..." + (show)
@whr

I took it for 18 months until I could barely get out of bed. My cancer has returned and after a bone density test have osteoporosis. I won't take them again.

Jump to this post

Thank you @whr for your comment. I am leaning toward not taking them. Wishing you the very best

REPLY
1ek | @1ek | May 3 8:55am
In reply to @mimzy "I had a 7 mm, stage 1, negative nodes (IDC) removed via lumpectomy. I am just..." + (show)
@mimzy

I had a 7 mm, stage 1, negative nodes (IDC) removed via lumpectomy. I am just finishing radiation therapy. Oncotype score is 10. I’m scared to take the AIs due to my own history and close family history of cardiac issues, kidney issues, and pre-existing joint pain from arthritis. Docs are encouraging AI Anyone else experience this? Thank you in advance

Jump to this post

I also had stage 1 IDC, Oncotype zero, osteoporosis and high cholesterol, so I wasn’t interested in AIs. I am on 5 mg of tamoxifen, which doesn’t affect bone loss or cholesterol.

It seems that if you’re post menopausal oncologists go straight to AIs, and don’t mention tamoxifen as an option - you may have to ask.

I started on 20 mg, developed severe leg cramps, so oncologist dropped dose to 5. I occasionally get some minor leg cramps and night sweats, not bad - more annoying than anything.

REPLY
1 reply
sue417 | @sue417 | May 3 9:13pm
In reply to @praggs "Hi - I'm so confused as well. And I agree - It sort of irritates me..." + (show)
@praggs

Hi - I'm so confused as well. And I agree - It sort of irritates me when I hear that I don't really have cancer - oh really? Then like you said, why the overkill?? Is it or is it not cancer? I've had 3 lumpectomies to get clear margins and am in 3rd of 4 weeks of daily radiation treatment. When that ends my medical oncologist wants me to go on anastrozole for 5 years. There are so many side effects that I don't know if I want to do that. And yes, how do you get clear answers? It's so frustrating. I'm 72 and have osteopenia. I'm tempted to just take my chances and not do the AI since I don't have cancer. HA

Jump to this post

Hi
Did you ask for an oncotype dx test? To show if it would be beneficial?

REPLY
1 reply
sue417 | @sue417 | May 3 9:15pm
In reply to @1ek "I also had stage 1 IDC, Oncotype zero, osteoporosis and high cholesterol, so I wasn’t interested..." + (show)
@1ek

I also had stage 1 IDC, Oncotype zero, osteoporosis and high cholesterol, so I wasn’t interested in AIs. I am on 5 mg of tamoxifen, which doesn’t affect bone loss or cholesterol.

It seems that if you’re post menopausal oncologists go straight to AIs, and don’t mention tamoxifen as an option - you may have to ask.

I started on 20 mg, developed severe leg cramps, so oncologist dropped dose to 5. I occasionally get some minor leg cramps and night sweats, not bad - more annoying than anything.

Jump to this post

Hi
I tried tamoxifen it was brutal for me ay 5mg. I can't do it my side effects started day two I was only on at 6 days I couldn't function my head felt so weird the headache was insane my ears were ringing I was having severe leg cramps I got a rash so I'm going to pass

REPLY
praggs | @praggs | May 4 11:07am
In reply to @sue417 "Hi Did you ask for an oncotype dx test? To show if it would be beneficial?" + (show)
@sue417

Hi
Did you ask for an oncotype dx test? To show if it would be beneficial?

Jump to this post

You know, the oncotype dx test was not even mentioned at my one and only appointment with the medical oncologist. I've only heard about it on here. I had my last radiation appointment yesterday and started on anastrozole today as per the oncologist. ER positive but I don't know the HER - was not on my pathology report. Stage 2 Grade 0.
I'm thinking I have a lot more questions as time goes on.

REPLY
1 reply
sue417 | @sue417 | May 4 3:53pm
In reply to @praggs "You know, the oncotype dx test was not even mentioned at my one and only appointment..." + (show)
@praggs

You know, the oncotype dx test was not even mentioned at my one and only appointment with the medical oncologist. I've only heard about it on here. I had my last radiation appointment yesterday and started on anastrozole today as per the oncologist. ER positive but I don't know the HER - was not on my pathology report. Stage 2 Grade 0.
I'm thinking I have a lot more questions as time goes on.

Jump to this post

Hi
Good luck on the medications. Yes you need to find out exactly what it was and if you had any invasive cancer if you didn't then you won't be able to get the oncotype test that's what I was told. I am not taking any of the medications way too many serious side effects and I already have health issues

REPLY
View MoreView Less
Please sign in or register to post a reply.