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Topic: How Many are doing 10 years on Aromatase Inhibitors

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Mar 22, 2013 04:19AM

aussieched wrote:

When I started on Femara, I was told I would need to take it for 5 years.  Now that I have finally reached the 5 years (and having experienced many side affects from the drug along the way), many oncologists are now saying that it is best to extend treatment up to 10 years.

How many out there, are being told to continue taking the AI for up to 10 years, and if so, what are the reasons the oncologists are giving you for the extension in time.  Is it because of the grade of cancer, number of positive lymph nodes, size of tumour, chance of recurrence?  At what point, or problems, or bone damage are they saying, no stop the drug, you can't take it any more

regards Ched



Dx 5/11/2007, IDC, 2cm, Stage IIA, Grade 1, 1/30 nodes, ER+/PR+, HER2- Surgery 5/30/2007 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary; Prophylactic ovary removal Radiation Therapy 8/16/2007 Hormonal Therapy 9/28/2007 Femara (letrozole)
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Aug 2, 2018 07:26PM Staceybee wrote:

I am 52 but was still getting monthly periods. Because I have ILC and a micromet in a sentinel node, doctor is skipping over tamoxifen and we are doing ovarian suppression + AI + Zometa. I asked if I should have a bone density scan and she said no need because I am still premenopausal so should not have issues now.

I am pleased to have a chance at reduced bone recurrence risk from Zometa. Yes, worried about the jaw necrosis risk as I have some teeth that are sensitive but I cleared with dentist and am going to have her monitor them closely and frequently.

1/2 SN w 1mm "micromet"; lots of LCIS found in surgery; oncotype=13; age 52 at dx Dx 4/24/2018, ILC, Right, 1cm, Stage IB, Grade 2, 1/2 nodes, ER+/PR+, HER2- (IHC) Surgery 5/21/2018 Lumpectomy: Right Radiation Therapy 7/9/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 8/2/2018 Arimidex (anastrozole)
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Aug 6, 2018 01:32PM Golden01 wrote:

My oncologist is recommending that I stay on my AI until 7 years (was on Tamoxifen for 3 years and have been on an AI for 3 years at this time) and then we'll see what the research shows. I have not had a lot of side effects. Did have the Breast Cancer Index test at five years out which should I am at low risk for recurrence and am a low responder to the AI. My oncologist felt that "low" does not mean "no" and as long as my bones are all right (have osteopenia and receive Prolia every six months with DEXA scans annually) that it would be reasonable to continue my AI to the seven year mark. After that, "we'll see".

Mucinous Carcinoma, Hypercellular Variant; Oncotype DX 27, Dx 7/8/2011, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2- Hormonal Therapy 7/20/2014 Arimidex (anastrozole)
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Feb 3, 2019 08:08PM kjiberty wrote:

I was dx'd 01/2012. (Stage 1, Grade 3, E/R, PR +, HER-, Onc. DX score 28) Have been on anastrozole since 7/12. After 5 years, my mo said studies indicated less chance for recurrence if taken for 10 years. Six months later, she said different studies said it made no difference. Since my S/E's are minimal I decided at this point to be on the 10 year plan.

Karen Surgery 3/12/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 4/19/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/25/2012 Arimidex (anastrozole) Radiation Therapy 7/25/2012 Breast Dx IDC, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Feb 3, 2019 10:48PM wintersocks wrote:

6 years for me and have been told my a BC nurse to stay on it for 10 years as studies suggest it looks like it might be beneficial.in stopping recurrence, My onc said no studies to date indicate any advantage beyond 5 and wanted me to go on Tamoxifen, from what I have read AI are more protective at preventing recurrence than Tamox. Never sure what to believe.

Dx 2/20/2012, IDC, 6cm+, Stage IIIA, Grade 2, 4/11 nodes, ER+/PR-, HER2- Chemotherapy 3/22/2012 Doxil (doxorubicin), Taxotere (docetaxel) Surgery 8/28/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Hormonal Therapy 9/9/2012 Femara (letrozole) Radiation Therapy 9/15/2012 Breast, Lymph nodes
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Feb 4, 2019 12:29AM voraciousreader wrote:

those of you who are new or were diagnosed in the last five years may be eligible for thhe BCI genetic testing.

https://www.breastcancer.org/symptoms/testing/types/breast-cancer-index-test


Also, this recent study might be helpful as well.


https://www.breastcancer.org/research-news/5-more-years-of-ais-no-better-than-2-more




Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Feb 8, 2019 09:09PM Puffin2014 wrote:

My oncologist called today with the results of my Breast Cancer Index. My risk for re-occurence in the next 5 years is 5.2% (5 is considered the point it becomes high risk). However, the test also showed that staying on my arimidex would not significantly change that percentage number. I'll see what my oncologist is thinking at my next appointment, but in my mind why stay on it and risk further osteoporosis if it isn't going to affect my cancer risk.

Dx 5/23/2014, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/16/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 7/17/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/13/2014 Breast Hormonal Therapy 11/10/2014 Arimidex (anastrozole)
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Feb 8, 2019 09:35PM Peregrinelady wrote:

Puffin, there is someone else here that had that same result, but I think she decided to stay on it, anyhow. I guess it depends on your side effects and bone density. I would love to quit to see how I feel without this achiness and fatigue. Good luck with whatever you decide.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/31/2016 Arimidex (anastrozole)
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Feb 9, 2019 09:48AM lala1 wrote:

Puffin2014--I also had the same result as you, High Risk for Recurrence/Low Benefit for Continuing Therapy. And my number was 6.5. However I was on Tamoxifen. I was really freaked out about this result because, for me, it's so ambiguous. My MO, who is very much like me and loves his numbers and stats, said to just look at it this way....the margin of error on the test is about 1% which means I COULD be closer to the 5 than I think. And he said merely by exercising every day I reduce my recurrence risk by about 40%. And if I get my diet right it'll go down another 30%. And if I drop 10 pounds (my BMI is just over into overweight category) my risk will drop another third. He said at that point I've pretty much halved my risk without taking a single Tamoxifen pill. And according to the test, hormone therapy probably does me no good but at best drops my risk by about 1% (margin of error). So he filled another RX for me but asked me to go home and not take it. I'd have it, but not take it. And just go one day at a time without it. But I would have it if I got too anxious about it. He said treat it like AA! And he was right. Over time, I just forgot about it. I go to the gym every day and I've dropped about 5 pounds so I'm headed in the right direction. Every once in a while I think what if....but then I just move on. I was never happy about the risk for blood clots on it so that worry is gone. And I had a total hysterectomy about 2 years into Tamoxifen so I didn't' have to worry about that anyway. Your numbers are so low I wouldn't worry about continuing. I will say that I am now 1 year from quitting T and I am just now starting to get back to normal. My cholesterol is now down 20 points. My joints don't hurt anymore. And just this last month the weight started coming off. And as a kicker, T yellowed my gray hair I love so much and it's just now starting to go back to gray!

Anyway, hope this helps.

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/13/2012 Mastectomy: Left Hormonal Therapy 2/1/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/26/2013 Reconstruction (left): Silicone implant Surgery 6/25/2014 Reconstruction (left): Nipple reconstruction Surgery 1/20/2015 Prophylactic ovary removal
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Feb 9, 2019 11:56AM Peregrinelady wrote:

Thanks, lala. You were the person I was thinking of. Thank you for your explanation and sharing your advice from your Dr. My score is a 9 (27% without extended therapy and 10.5 with) so that might be why I also have a high benefit from extended therapy. I also had the "fun" of seeing my score for 10 year chance of recurrence since my doctor ordered the BCI upon diagnosis. It was 16%, which I just now realized must have been without antihormonals, since my Oncotype (12) said 8% with hormonal therapy. I am almost 4 years out now so I am a little worried about the 5 year mark, but am exercising and trying to lose weight to cut those percentages down. I also read a study that said women who were at normal weight were 40% more likely to benefit from an AI.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/31/2016 Arimidex (anastrozole)
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Feb 9, 2019 12:40PM pip57 wrote:

I took tamoxifen for 1 year and did not like the SE. I had an oopherectomy and was put on Arimidex. Just went off of it a couple of weeks ago. I was very high risk for reoccurrence and would have continued but the doctors would not allow it. It took a while to be at peace with that but was ok with it once I finished my last prescription. I have also been cut loose from my annual cancer follow ups. I am very thankful for that.

Apparently my case is used as a teaching tool for oncologists. I just celebrated 12 years.

PIP - multi focal, FEC100/Tax, rads, dble mast with no recon, ooph/hyst, arimidex Dx 2/1/2007, DCIS/IDC, Left, 3cm, Stage IIIB, Grade 2, 9/16 nodes, ER+/PR+, HER2-
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Feb 10, 2019 03:26PM HarleyB wrote:

I was on Tamoxifen for 20 months and then switched to Arimidex. At my last oncologist visit my doctor surprised me by suggesting that my 5 years would soon be up and I would be stopping Arimidex. This totally freaked me out - as much as I hate the aching bones and joints - not to mention the dry eyes,vaginal atrophy and thinnest hair ever - I do like the knowledge that I’m doing everything possible to avoid a recurrence.

I hadn’t realised that the 20 months I spent on Tamoxifen would be added to the 3+ years on Arimidex to get to a total of 5 years? After a bit of a discussion she suggested we’d look at my DEXA scan results and see how my bones are holding up. So now the Arimidex is on a year to year basis.

For some ridiculous reason I am obsessed with the idea that I have to do the full 5 years on Arimidex otherwise it won’t work. But I’m also excited at the idea of my body hopefully feeling a bit more normal? The DEXA scan is in a few weeks and I feel like I’m back at school - desperately wanting to do well on an exam I can’t reallystudy for!

Dx 8/30/2013, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Feb 10, 2019 03:50PM pip57 wrote:

That’s exactly how I felt. Very mixed emotions about it all. Because I was 100% er+and pr+ my onc let me go year to year. It all depended on my bone density which is still in the normal range.

PIP - multi focal, FEC100/Tax, rads, dble mast with no recon, ooph/hyst, arimidex Dx 2/1/2007, DCIS/IDC, Left, 3cm, Stage IIIB, Grade 2, 9/16 nodes, ER+/PR+, HER2-
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Feb 11, 2019 11:06AM NotBrokenJustBent wrote:

I'm on the seven year plan. I have a year and a half to go so hopefully there will be more definitive answers for the ten vs seven years question.

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Feb 11, 2019 01:06PM JoE777 wrote:

For those of us who are metastatic and HR+, it's forever. Makes me wonder about time limits at other stages.

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole) Chemotherapy Other Radiation Therapy External: Bone Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Feb 12, 2019 11:18AM - edited Feb 12, 2019 12:13PM by LizM

I was on Femara for 10 years. I finished in 2016. I would have gone off at 5 yrs but I asked my MO if I could stay on (results of taking for 10 years were not completed) and he agreed. I have no regrets that I stayed on for 10 years. If they would let me I would still take my little pill as it gave me a sense of security. Now that I am going on 14 years since diagnosis, I exercise every day in hopes that will keep the estrogen in my body low, don't drink alcohol except for once in a while and stay thin. Stll keeping my fingers crossed but so far, so good. I do have borderline osteoporosis but I take a Prolia shot every six months.


Dx 9/19/2005, IDC, 2cm, Stage II, Grade 1, 1/8 nodes, ER+/PR+, HER2-
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Feb 13, 2019 03:51PM Chris13 wrote:

My DXS scan showed significant spinal bone loss (hips remained the same) after last 2 years. I am coming up to the 7th year on Armidex and am okay with SEs... creakiness seems normal for a 72 yo (and I exercise a lot and take supplements to help with inflamation/pain.)

I was planning to stay on the AI when talking to my onc next month, and am super worried about the bone meds she probably will recommend. (I have lots of dental work including implants in place, for example.)

So wondering if discontinuing AI will help bones, and found this:

https://academic.oup.com/annonc/article/22/4/857/2...

Apparently bones do recover a bit after discontinuing, if I read this right. Anyone else want to take a shot at the research?

"To attend to the moment is to attend to eternity." 2 ILC tumors 1.6. 1/4 positive nodes. Oncotypes 8 & 15. No rads/chemo. Dx 2/24/2012, ILC, 1cm, Stage IIA, Grade 1, 1/4 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Reconstruction (right): DIEP flap Surgery 5/1/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 8/1/2012 Arimidex (anastrozole)
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Feb 15, 2019 02:49PM - edited Feb 15, 2019 03:06PM by otter

After 10 years of nonstop Arimidex/anastrozole, my med onc declared me "done" with AI's last May.

Her plan for me was subject to revision all along. At the very beginning, she said she recommended an AI rather than tamoxifen in my case because I was firmly menopausal and she didn't like the risks associated with tamox. A baseline DEXA bone scan indicated I was already osteopenic; but she wasn't concerned about that (yet). In her words, osteoporosis was treatable; uterine cancer, not so much.

Three years later, she said she was waiting for results of the "extended AI" trials, which would help us decide whether I should stay on an AI longer than 5 years (the standard at the time). Trial results still weren't available at my 5-year mark, but my bone density was stable and my other SE's were minimal, so we decided to split the difference and go for 7 years.

By the time I'd been on anastrozole for 7 years, she was leaning toward the full 10. She said if I'd been "low risk," we'd have stopped at 5 years; but I wasn't. (My Oncotype DX score was 26.) My bone density had slipped a little, but I was still above the osteoporosis threshold.

So, when she walked into the exam room at my recheck last May, she announced, "I'm writing orders to discontinue the Arimidex." We had talked about BCI testing the previous year, but only hypothetically. For me, it was a moot issue by then. (Honestly, I really didn't want to know at that point.)

The very good news is that I had my biennial DEXA bone scan in conjunction with that med onc visit, and I haven't lost any more bone. In fact, the bone density in my lumbar spine (which was consistently the worst) had *increased* a bit, so they did a wrist/forearm scan to double-check. I have not been on a bisphosphonate or Prolia -- just Vitamin D3.

All of that was pretty much ratified by the recent recommendations from ASCO regarding 10 years of AI:

http://ascopubs.org/doi/full/10.1200/JCO.18.01160

otter

Edited to add: Chris13, I think your conclusion about that study is correct. Here's the key statement:

"What these study results demonstrate is that, in contrast to the beneficial effects of anastrozole on breast cancer recurrence which extend substantially beyond the cessation of treatment, anastrozole-associated BMD loss begins to resolve immediately after treatment cessation and any bone loss associated with anastrozole can be monitored and managed as needed."

Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Feb 15, 2019 03:19PM pip57 wrote:

My onc was more concerned about heart issues with continued use after 10 years.

PIP - multi focal, FEC100/Tax, rads, dble mast with no recon, ooph/hyst, arimidex Dx 2/1/2007, DCIS/IDC, Left, 3cm, Stage IIIB, Grade 2, 9/16 nodes, ER+/PR+, HER2-
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Feb 15, 2019 04:08PM - edited Feb 15, 2019 04:08PM by otter

Yes, pip, that's good advice. My onc was relentless in her insistence that I get a good internist as my primary care doc. As she explained repeatedly, at my age, I was as likely to die of "something else" as I was to succumb to a recurrence of BC. In my case, the "something else" could very likely be heart disease. Even though she and I never discussed the cardiac risks with Arimidex/anastrozole, I'd read about them, and I didn't want to tempt fate.

otter

Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Feb 16, 2019 09:15PM Kindergarten wrote:

Hi, Otter! It is good to see you! I took Aromasin for 11 Years! I am also worried about the heart issues! I am seeing a cardiologist next month! My onc and primary want me to have a baseline stress test!

Kathy Dx 11/17/2004, IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2- Chemotherapy 12/4/2004 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 5/28/2005 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal Radiation Therapy 6/4/2005 Breast Dx IDC, 2cm, Stage IIB, Grade 3, 1/28 nodes, ER+/PR+, HER2-
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Feb 28, 2019 12:37AM Puffin2014 wrote:

lala1: thanks for your response. I'll remain on my arimidex until Nov to finish out my full 5 years. I have a feeling my oncologist is going to try and talk me into staying on it longer at my next appointment. She's going to have to have some really good reasons to make me change my mind.

Dx 5/23/2014, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/16/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 7/17/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/13/2014 Breast Hormonal Therapy 11/10/2014 Arimidex (anastrozole)
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Feb 28, 2019 06:45AM april1964 wrote:

puffin, did you do the breast cancer index test?


oncotype 18 Dx IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 1, 2019 08:26PM Puffin2014 wrote:

april1964: Yes, I did the Breast Cancer Index test. My risk for re-occurence in the next 5 years is 5.2% (5 is considered the point it becomes high risk). However, the test also showed that staying on my arimidex would not significantly change that percentage number. I'll see what my oncologist is thinking at my next appointment, but in my mind why stay on it and risk further osteoporosis if it isn't going to affect my cancer risk. I will stay on the arimidex until November to complete my full 5 years.

Dx 5/23/2014, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/16/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 7/17/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/13/2014 Breast Hormonal Therapy 11/10/2014 Arimidex (anastrozole)
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Mar 4, 2019 04:33AM Momushka wrote:

I was recently taken off of Aromasin (ten years after surgery - after 2+ years on Tamoxifen). I'm wondering about side-effects from coming OFF the Aromasin.

I'm very shakey inside - anxiety feeling. Have others experienced this?

Anything I can take to help it?

I would be soooo grateful for any input - because now I'm contantly sure I'm having a heart attack or stroke, all the time......

Thanks

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Mar 10, 2019 11:40AM Aug242007 wrote:

Momushka, I really believe you will start to feel less shaky. Everyone has some anxiety about stopping any treatment. I took Arimidex for 10 years and stopped about 2 years ago. You will feel better. Now I just feel like I am 63 which I am.

IDC 2.2 cm 2007 lumpectomy then BMX 2008, Oncotype 11, AIs for 10 years, Chris Rock states "the U.S. will never cure cancer, the money is in the medicine". Dx 8/24/2007, IDC, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 12/18/2007 Surgery Mastectomy Surgery Lumpectomy Radiation Therapy
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Mar 14, 2019 01:48AM Momushka wrote:

Thanks - good to hear! Will be even better to feel the change....

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Mar 31, 2019 02:29PM - edited Mar 31, 2019 02:30PM by bc101

My BCI showed my risk is 1.5%. Based on that, my providers recommended I stop at 5 years due to the low risk of reccurrence and because of my osteoporosis. It was a really really tough decision for me, especially considering I had ILC, but I decided the benefit was too low. I saw my mom go through painful spinal fractures towards the end of her life and I hope I never have to go through what she experienced (Yes, I was on Zometa and am now on Prolia).

Best of luck to all!

Dx 6/2013, ILC, 5cm, Stage IIB, Grade 1, 1/18 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane) Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Apr 9, 2019 09:00AM lala1 wrote:

bc101-- I took Tamoxifen and also stopped at 5 years per BCI and was a little freaked out about not having that "protection". My MO suggested I fill a prescription and put it on my counter as usual and then just not take the pill. He said treat it like AA and do it one day at a time. If I found at anytime the anxiety was overwhelming, I would have my Tamoxifen to take. I did as suggested and never did need it. He was right...just having it just in case was enough for me and one day I was ok with throwing it away.

That was a good day. Happy

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/13/2012 Mastectomy: Left Hormonal Therapy 2/1/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/26/2013 Reconstruction (left): Silicone implant Surgery 6/25/2014 Reconstruction (left): Nipple reconstruction Surgery 1/20/2015 Prophylactic ovary removal

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