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All TopicsForum: High Risk of Recurrence or Second Breast Cancer → Topic: Stage 1-Should I worry about recurrence???

Topic: Stage 1-Should I worry about recurrence???

Forum: High Risk of Recurrence or Second Breast Cancer — Managing high recurrence risk of developing a second breast cancer.

Posted on: Jul 13, 2008 01:20PM - edited Jul 13, 2008 01:38PM by tami48

tami48 wrote:

I had bi-lateral mastectomy and Ooph this year.  My Onco says I'm at low risk for cancer recurrence.  I just keep wondering if I really need to be on Arimidex since I'm low risk.  From my understanding they put you on an AI if your tumor is over 1.0, mine was only 1.5.  

I was told that by getting the bm and ooph that I lowered my chances of a recurrence by over 90%.  Sounds pretty good to me.  I'm also BRCA2+.

Has any other Stage 1, Grade 2 ladies had a recurrence that had bi-lateral mastectomy & ooph?  I do worry that my cancer could come back, so I'm asking questions and surfing the internet.

I may sound stupid, but I just wonder......

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Posts 31 - 46 (46 total)

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Sep 17, 2017 07:54AM letsgogolf wrote:

annwill64 I am on Arimidex and have absolutely no side effects. My sister has been on it for 2 1/2 years with no side effects. I don't think this is unusual.

Oncotype DX = 3. IDC with Lobular Features. Sentinel Node had Micrometastases - Estrogen 100%, Progesterone 99.89%, Ki67= 3.3% Dx 2/14/2017, IDC, Left, 1cm, Stage IB, Grade 1, 0/8 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left Radiation Therapy 4/6/2017 Whole-breast: Lymph nodes Hormonal Therapy 6/1/2017 Arimidex (anastrozole)
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Sep 17, 2017 10:32PM Meow13 wrote:

No side effects, wow. After 2 years of being on anastrozole and exemestane finally getting better from with joint pain and other effects. To me it is so unbelievable how different people react to these drugs. I feel like my health is coming back.

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Sep 18, 2017 08:14AM edwards750 wrote:

We all aware of stats for early stage BC. I am one of those stats. Stage 1b, Grade 1. Small tumor and 11 Oncotype score. 8% chance of recurrence. I'm encouraged but there is no guarantee. Still I worry less as the years go by. I'm 6 years out.

I did take Arimidex and was switched to Tamoxifen because Arimidex attacks the bones and I have borderline osteoporosis. No real side effects except joint pain. Oncologist discharged me and said I could quit taking Tamoxifen. No need to continue on.

I do know people who decided against taking Tamoxifen for various reasons. One in particular didbtcwNt to because she was pre-menopausal and it does throw you into full menopause. Her call, her risk. My sister took Arimidex and now gets shots instead monthly. She couldn't tolerate the side effects. She's one year behind me in DX.

I would talk to my ONC if I was concerned about taking them.


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Sep 18, 2017 08:30AM Lisey wrote:

Edwards, just to clarify. Tamoxifen does NOT throw you into menopause. I have regular periods and have had no issues there. I've been on it for over a year. No side effects - though my hair is suddenly thinning. I'm not sure that's tamoxifen's fault.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/7/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 18, 2017 12:08PM Taco1946 wrote:

Farmerlucy - I like your analogy. At 8 months post diagnosis, I find myself thinking about cancer as a chronic disease. I pop my AI along with my cholesterol and blood pressure medicines. All of them should help me stay healthier. None of them guarantee it. I will die of something and frankly, I hope it isn't the senile dementia that my mother had.

I also read in one of the site articles that those of us who take other medication do better with compliance with AI's because it is just added to an already established routine.

Dx 11/22/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Radiation Therapy 12/29/2016 Balloon-catheter: Breast Chemotherapy 2/3/2017 Taxol (paclitaxel) Targeted Therapy 2/3/2017 Herceptin (trastuzumab) Hormonal Therapy 4/28/2017 Arimidex (anastrozole) Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Sep 19, 2017 08:07AM edwards750 wrote:

Lisey - that's what my friend's daughter's Oncologist told her so she refused to take it. It doesn't apply to me since I've already been through it.


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Sep 19, 2017 08:12AM edwards750 wrote:

Read the articles about Tamoxifen and premature menopause. It definitely can do that because it is an estrogen blocker. Not saying every woman will but it does happen.


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Sep 19, 2017 08:34AM pupmom wrote:

DIanne, this is literally the first time I have heard about that being an SE of tamoxifen. Do you have any literature you can link which discusses this? If your friend's daughter needs tam and refused to take it because of that extremely unlikely SE, she was very foolish. I would also question the competence of her doctor.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Sep 19, 2017 12:16PM ReginaZ wrote:

I've been on the generic Arimidex for 6 months now, and no real side effects. It is the most effective treatment for those of us who are highly ER+. However, if I do develop unbearable side effects in the future, I won't feel too bad stopping it because my risk of recurrence is low either way

We are not human beings having a spiritual experience, we are spiritual beings having a human experience Dx 2/2/2017, IDC, Right, 1cm, Stage IA, Grade 2, 1/7 nodes, ER+/PR+, HER2- Surgery 2/20/2017 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary Hormonal Therapy 3/23/2017 Arimidex (anastrozole) Radiation Therapy 4/13/2017 Whole-breast: Breast
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Sep 19, 2017 01:04PM mustlovepoodles wrote:

annwiil, keep in mind that the people who post here are a minority of those who have breast cancer. Those who post are generally either questioning or have some issues.

I've been on letrozole for 18 months months. Other than joint pain and aches, I haven't had much trouble. No hair thinning, no weight gain. In fact, I've lost 20-lbs! I have arthitis anyway, so it's hard to tell how much joint pain is a side efect, but it's not debilitating. My sister has taken Arimidex for 5 years and has zero SEs.

I have PALB2 and Chek2 mutations, which puts me right in the middle of BRCA2 risk. I wouldn't even dream of not taking my AI!

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/3/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/19/2016 Hormonal Therapy Femara (letrozole) Surgery
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Sep 19, 2017 08:34PM exbrnxgrl wrote:

I am in an entirely different situation than those who are early stage, but wanted to comment on se's of AI's. Listed se's and se's that you read about on message boards can all happen, but it's important to remember that those who no or minimal se's are usually not posting about that on support forums. I have been NED on Arimidex and now Femara for 6 years. Being stage IV, I will not consider stopping but more importantly, though I have some joint and bone pain, my QOL has not been diminished. I work full time, walk my dogs, play with my grandchildren and even climbed the Harbour Bridge in Sydney a few years ago. Please remember that those who are fine on these drugs rarely have threads/posts about it !

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole)
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Sep 20, 2017 08:36PM Meow13 wrote:

My side effects were cumulative to point I felt unable to get out of bed from joint pain. My doctor said I should have told him how bad things were getting. I hate to complain I felt confident the anastrozole was protecting me from cancer recurrence. It was exemestane that caused severe dry eye. The thought of losing my eye sight scared the crap out of me. Sooooo happy not to be on meds anymore.

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Sep 20, 2017 08:42PM marijen wrote:

Meow did your pain subside after you got off? And if it did how long did it take? Pls.

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Sep 20, 2017 10:35PM Meow13 wrote:

oh yes much much better. I still have some arthritis.

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Sep 22, 2017 07:32PM - edited Oct 15, 2017 09:47PM by marijen


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Sep 24, 2017 07:50AM Corinne6 wrote:

No. Worrying won't help. I was in stage 2 and am 9 yrs out. Most cancers are cured in stage one and 2

Have not I commanded thee? Be strong and of good courage: be not afraid,neither be dismayed: for the Lord thy God is with thee whithersoever thou goest. Joshua1:9 Dx 7/2008, IDC, Left, 1cm, Stage IIA, Grade 3, 2/15 nodes, mets, ER+/PR-, HER2+ (FISH)

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