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Topic: Stage 1 IDC without any hormone treatment after surgery?

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: Sep 28, 2019 08:17PM

BCboard63 wrote:

Diagnosed as IDC three moths ago and had mastectomy in July. Stage 1c, node-negative, tumor size 12mm, ER+, PR-, HER2-, Grade 2, Oncotype 21. One MO prescribed Arimidex and another Letrozole. but I don't want to take it due to existing medical conditions-osteoporosis, high cholesterol, poor liver history, frequent rashes, wrist pain, urinary frequency etc…From what I read, it seems the treatment related risks outweigh the benefits. For me, quality of life is more important. Mastectomy has already made my life miserable and really hate to live another 5 years with SEs. Also, I am over 63, kids grown up and wouldn't mind to leave sooner or later. Does anybody have similar diagnosis or experience share with me?

Thank you!

Dx 5/29/2019, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- (FISH) Surgery
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Posts 31 - 50 (50 total)

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Mar 15, 2020 09:15AM dtad wrote:

Hi everyone. I refused aromatase inhibitors from the start due to poor health at the time of diagnosis. I have multiple autoimmune disease with poor QOL. Thankfully I just hit the 5 year mark. This was the right decision for me. I'm not advocating it for anyone else. We all have to make our own informed decisions. Good luck to all navigating this complicated disease.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 15, 2020 07:50PM - edited Mar 21, 2020 11:02AM by Georgia1

Hi BCboard63,

I'm going to chime in with the others who recommended at least trying Tamoxifen. It reduces your recurrence risk, builds bones, and most women find the side effects quite temporary. You get results even with two years, five years is better of course. I am 61, with osteoporosis, and also take Fosomax for the osteoporosis. In terms of your question on supplements, I only take calcium and vitamin D. Side effects of Tamoxifen can be quite minimal in post-menopausal women and they certainly are in my case.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 20, 2020 10:17AM - edited Mar 22, 2020 01:22PM by CTMOM1234

Coming back on here to pay it forward, so appreciative for those who were here for me when I needed guidance and support during my bc journey, and I was reminded of that when today I was private messaged by someone who somehow found my old post(s). I've been where many of you are: annual routine mammogram revealed questionable micro-calcifications, no family history, hematoma after biopsy, surgeon trying to steer me to mastectomy, genetic testing for BRCA1 and 2 (thankfully negative), more stress when sent for MRI biopsy of other breast (thankfully nothing), oncology appointment regarding tamoxifen, etc. And not seeing too many survivors return to these boards.

I will be 55 years old on Monday. Ten years ago, I spent part of my 45th birthday on a radiation table getting zapped. I am a private person and suffered in silence but turned to these boards to help get me through this. So Happy 10 years to me, and wishing you all light at the end of this very scary tunnel and that you come back to provide comfort to others. Please pm me if I can be of help, many did the same for me a decade ago.

Jan'10 lumpect.grade 2 DCIS. SURPRISE 1.75mm grade 2 IDC in path report, so stage 1a. Jan'10 SNB 0/3 nodes. Mar-Apr'10 rads: 25 full+5 boosts LEFT PRONE position, stickers/NO TATS. May'10 DECLINED tamox. Feb'21 --11 yrs later! I'm doing fine:) ! Dx 11/1/2009, ER+/PR+
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Mar 20, 2020 04:57PM KIDI919 wrote:

Good news CTMOM1234!!

Dx 9/17/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/15/2020 Whole-breast: Breast Hormonal Therapy 3/8/2020 Femara (letrozole)
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Mar 21, 2020 10:51PM BCboard63 wrote:

Hi dtad,

Congratulations on the 5 year mark and thank you for response here! I am very happy to find your situation is quite similar to mine. Your experience is a very encouraging news to me.

Dx 5/29/2019, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- (FISH) Surgery
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Mar 21, 2020 10:59PM BCboard63 wrote:

Hi Georgia1,

None of my MOs recommended Tamoxifen. I asked MOs about this and she said AIs are more effective.

Dx 5/29/2019, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- (FISH) Surgery
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Mar 21, 2020 11:03PM BCboard63 wrote:

Happy 10 years CTMOM1234! I totally agree with you that these boards are very helpful.

Dx 5/29/2019, IDC, Left, 1cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- (FISH) Surgery
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Apr 28, 2020 05:13AM VeeHow wrote:

I told my husband I would rather have quality of life over quantity. I don’t want to take the AI but might try it. With the health problems and medications I take I doubt I’ll be able to continue it.

Started with Mammogram, then Ultrasound, then MRI - ADH. Excisional Biopsy - DCIS, Lumpectomy - DCIS/IDC Dx 3/17/2020, DCIS/IDC, Left, Stage IA, Grade 2, 0/0 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy: Left Radiation Therapy
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Apr 28, 2020 04:51PM UpstateNYer wrote:

hello VeeHow,

I have taken anastrozole(arimidex)since last September. I have had zero side effects on it. Hoping the same for you. There are different choices out there. If one gives you se's, you could certainly try another. Best of luck to you.

Into every life a little rain must fall Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Dx 2/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, ER+/PR-, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/3/2019 Lumpectomy: Right Chemotherapy 5/8/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/7/2019 Lumpectomy Hormonal Therapy 9/5/2019 Arimidex (anastrozole) Radiation Therapy 9/11/2019
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May 19, 2020 09:35AM VeeHow wrote:

Can you go for a second opinion? Or get another Oncologist

Started with Mammogram, then Ultrasound, then MRI - ADH. Excisional Biopsy - DCIS, Lumpectomy - DCIS/IDC Dx 3/17/2020, DCIS/IDC, Left, Stage IA, Grade 2, 0/0 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy: Left Radiation Therapy
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May 19, 2020 07:33PM UpstateNYer wrote:

hi VeeHow,

Of course you are free to get a second opinion. I think you should be open to at least trying an AI. It is the standard of care post treatment. I don't know your health situation, however. That is probably why you should perhaps get a second opinion. Best of luck to you. Pat😊


Into every life a little rain must fall Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Dx 2/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, ER+/PR-, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/3/2019 Lumpectomy: Right Chemotherapy 5/8/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/7/2019 Lumpectomy Hormonal Therapy 9/5/2019 Arimidex (anastrozole) Radiation Therapy 9/11/2019
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May 19, 2020 08:15PM moth wrote:

just a point of information, for hormone positive bc the risk of recurrences, local or metastatic, after 5 yrs does not go to zero. The risk continues to persist (forever from what I saw on the charts till forever)

TNBC is more likely to recur in the early yrs so tnbc pts can generally breathe a bit easier after the 5 yr mark, but this is not the case for hormone +. This is why some people stay on hormone suppression past the 5 yr mark

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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May 20, 2020 01:15PM jcp wrote:

Georgia1 hello. I was on tamoxifen for about a year when diagnosed and then they switched me to femara which I took another 9.5 years. The dr took me off it about two years ago due to increased osteopenia and osteoporosis that was caused by the Femara. My bones have gotten better since being off of it but I did not want to come off as I have felt like I have no ca prevention. I saw that a some people are put on tamoxifen even if postmenopausal. I never knew that was a possibility. Ofcourse I am now postmenopausal that's why they had moved me to femara to begin with. I was dx at 42 premenopausal. So tamoxifen does not hurt the bones much? I have a scare right now with my lung and I have a CT tomorrow to hopefully find out that the calcifications they saw in chest xray are benign condition or benign nodule and also not lung ca . If you don't mind please say a prayer for me for tomorrow. Thank yo, JCP

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May 20, 2020 02:06PM JoniB wrote:

I've been on Arimidex (name brand) for four years. The only true side effects I have are to my appearance. I feel that I look older due to the loss if estrogen, I have an Arimidex belly (I'm a size 4 with a stomach), and my hair is fine and thin. I do take Prolia for bone loss.

Two time breast cancer survivor. Recurrence after 8 years. First time 3 mm ER-, PR-, HER2+. Recurrence 4mm - triple positive.
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May 20, 2020 07:00PM - edited May 20, 2020 07:01PM by Georgia1

Hi jcp. Tamoxifen not only doesn't hurt bones, it actually helps increase bone density. So since I was stage 1A, my oncologist was perfectly fine with prescribing T. If you've been on an AI for nine years tho, it may be perfectly fine for you to stop taking drugs; your oncologist would be able to give you pros/cons. And yes, I will be wishing the best for you tomorrow.

BCboard63, yes, the evidence is that AIs are more effective than Tamoxifen. But for women with full-blown osteoporosis, sometimes Tamoxifen is the better choice. That's where I landed. And when you're post menopausal, side effects can be mild to nonexistent.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 20, 2020 09:20PM jcp wrote:

Thank you, Georgia1! I have about 10.5 years in total on both Femara and Tamoxifen, with only about a year for Tamoxifen. I just really dont know why my onc didn't give me the option of T. I was really upset coming off the F bc I felt like I had no protection at all. I read two stories today where two women have been on Tamoxifen for 19 and 20 years! Idk. I do know that I've got to get through this tomorrow. Very afraid. It was difficult to get scheduled so I had to keep waiting to get it done, and I've just had too much time to worry. Sometimes I guess you are better off scheduling and going quickly. I will address this with my onc of I can get through this tomorrow afternoon. Thank you for responding! JCP

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May 20, 2020 09:21PM jcp wrote:

why do my posts always say private at top left? I guessing bc I hit post a reply?? Idk JCP

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May 20, 2020 09:22PM jcp wrote:

Georgia, why do my posts keep saying private whether I hit "post a reply" or not?

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May 20, 2020 09:26PM jcp wrote:

CTmom, why do my posts always say private at the top whether I hit the post a reply or not? Thx JCP

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Jul 15, 2021 01:03AM KIDI919 wrote:

JCP I know is an old post but i think you need to change your settings in Settings under your profile

Dx 9/17/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/15/2020 Whole-breast: Breast Hormonal Therapy 3/8/2020 Femara (letrozole)

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