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Topic: Doing Well on Aromatase Inhibitors (AIs)

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

This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Apr 22, 2017 06:51AM - edited Nov 15, 2017 11:09AM by Moderators

Butterfly1234 wrote:

I read a suggestion that someone should start a topic for women who are NOT experiencing severe SEs while taking Arimidex, Femara, or Aromasin. I'm about to start taking Arimidex and when I read about the potential SEs I get discouraged. Maybe others would also like to hear about positive experiences. We would love to hear from you!

Edited by Mods to add content from the main Breastcancer.org site on:

Aromatase Inhibitors

No matter what you look like or think you look like, you're special and loved and perfect just the way you are. Ariel Winter Dx 1/24/2017, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2017 Whole-breast: Breast Hormonal Therapy 5/9/2017 Arimidex (anastrozole)
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Apr 25, 2017 11:42AM Butterfly1234 wrote:

must love - I can't wait until rads are over so I can soak in a tub again. My treatment center offers therapeutic massages specifically for cancer patients. It's out of pocket but I'm considering it. I'm thinking it might help with aches and pains that may arise from Arimidex.

No matter what you look like or think you look like, you're special and loved and perfect just the way you are. Ariel Winter Dx 1/24/2017, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2017 Whole-breast: Breast Hormonal Therapy 5/9/2017 Arimidex (anastrozole)
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Apr 25, 2017 12:01PM 2FUN wrote:

I have recently discovered Clark 1824 oxfords. Mine are brown with a bronze metallic overlay. They are more comfortable than sneakers. Also I'm a big fan of J-41, Jambu, and all the other trademarks they use.

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Apr 25, 2017 12:11PM 2FUN wrote:

I guess I need to decide what is a major SE, and what is minimal. If I have to take ibuprofen every day b/c of the pain, is that major or minor SE. I am usually pretty tough. ...3 surgeries without pain meds after. I see my MO in a month, should I move up my appt?

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Apr 25, 2017 01:31PM ChiSandy wrote:

I take my analgesics (acetaminophen at bedtime, the COX-2 inhibitor celecoxib—which is easier on the gut than OTC NSAIDs—in the morning) prophylactically. Much easier to prevent or ease minor pain than to reduce major pain—something I learned when I was rehabbing from my knee replacement surgeries, when I vigorously advocated for my painkillers before the pain got past 3 out of 10. There is no honor in suffering (at least no secular honor), and no dishonor in doing what you can & should to prevent or minimize it.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Apr 25, 2017 03:36PM 2FUN wrote:

ChiSandy, so you are OK taking pain meds daily so you can take AI? It's defiantly a risk vs benefit scenario

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Apr 25, 2017 04:09PM voraciousreader wrote:

butterfly...nah! But once you begin wearing seriously comfortable shoes..you won't miss Payless or department store sales. Forget Aerosoles, forget Easy Spirit...forget Naturalizers...those are a waste of money! The shoes I mention will last for YEARS! The others...a season or two of serious walking...maybe....


And...I almost forgot..but should be added to the list...Dansko...


And a final thought...have your feet measured. Our feet flatten out with age...wide shoes and deep toe boxes are our best friends....AND...if you do buy shoes at a comfort shoe store...they have shoemakers who are experienced at making serious, but sometimes simple adjustments. No two feet are alike. So why should left and right shoes be the same?


Just sayin'



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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Apr 25, 2017 04:14PM Butterfly1234 wrote:

VReader - and let's not forget my beautiful bunion yuck! I'm sold on the shoes. Thanks.

No matter what you look like or think you look like, you're special and loved and perfect just the way you are. Ariel Winter Dx 1/24/2017, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2017 Whole-breast: Breast Hormonal Therapy 5/9/2017 Arimidex (anastrozole)
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Apr 26, 2017 05:50AM blooming wrote:

Thanks for sharing your many valuable insights. A few folks have mentioned the importance of not being afraid and of being kind to yourself as well as the importance of finding a team who will listen. Any advice on strategies of identifying folks who will listen effectively and trust you to know your body if you're perceiving something that is "off"?

The shoe thread is also very timely. I should see a podiatrist but I'm having trouble juggling schedules, so I'm hobbling. Thanks, ChiSandy for mentioning Finn-Comfort. I've had such a wonderful experience since I discovered Finn-Comfort. They even have a program where you can pay a fee and they'll refurbish your shoes (sole and all)! I thought I'd never experience foot/toe problems again, but alas, 18 months into my first Finn-Comfort shoes, I'm feeling pain for the first time!

Dx 1/18/2017, IDC, Left, ER+/PR+, HER2- Surgery 3/30/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 5/18/2017 Radiation Therapy 7/10/2017 Whole-breast
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Apr 26, 2017 07:05AM - edited Apr 26, 2017 07:07AM by claireinaz

Hi all, I began on tamox, then when it was confirmed chemo put me over the edge into full meno, I went on arimidex for 1.5 years. Had mood swings, bloating, depression, anger, and weight gain along with horrible trigger joints in some of my fingers. I was ready to stop completely and my doc asked me to take Aromasin. I did, and after nearly 2 years the only side effect I'm beginning to feel is some soreness in my thumb joints. I expect that when the semester is over and I don't have to type so much (I'm a univ. lecturer) my joints will calm down. All the other symptoms went away completely. I expect to be on this drug for at least 10 years--and maybe for the rest of my life, depending on what future research reveals. My fear is that I'll become immune to its effects.

As for diet, I am about 90% vegan, organic, mostly fruits and veggies with wild caught fish thrown in there from time to time. I eat the occasional dairy but it has to be grass fed, non-RbST (growth hormone) free.

I take a bunch of supplements my naturopath has recommended. Get lots of exercise because I'm a believer about the nurse's study/exercise and recurrence.

Had to get a Prolia shot, first time, for osteopenia. I didn't agree because of that condition; I liked the idea that my bones would be better protected from cancer. I eat 2 tums a night per my MO and let the rest of the calcium requirements come from food. I don't worry about not getting enough, that's for sure. I make sure I take liquid Vit D supps--6000 IU a day again per my naturopath, and K2 to help the calcium do its job. And I don't use sunscreen for the first 1/2 hour I'm outside.

What else? I refuse to wear ugly shoes, but they do have to be comfortable as well. Born shoes feel great to me and in the summer chaco flip-flops are my go-to shoes, but they are pricy (can't remember why we are talking about shoes and AIs but I thought I'd join in--it's a fun topic actually). I can't jump on the Keen bandwagon. My daughter worked for Teva/Deckers/Uggs for years, and she's spoiled me for good shoes since she could get me samples and deep discounts. :)

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Apr 26, 2017 07:34PM voraciousreader wrote:

Great question blooming...how to identify a physician who has your back and respects your judgment of how you are feeling...simple answer is just like there are so many shoe brands and styles, there are as many physicians and physician personalities...and...the only way of finding out which one is best for YOU...you sometimes have to try on many to find a few that work for you...the better, long answer is...nothing is written in stone when it comes to choosing a physician. I usually begin by asking other doctors who I like and respect for referrals. I also sometimes ask my physicians' office staff for names of doctors who they like...and then I narrow the list until I make a decision. That said,when looking for a doctor, I place a lot of emphasis on physicians' staffs. If they aren't helpful, then I don't care how good the physician is. I want a staff who do their jobs well. And, I want a doctor who is on time...or close to being on time as possible. If those two criteria are met, then chances are the physician will be GREAT. Hope that perspective helps. I always say...a doctor is only as good as their staff. If the staff is lousy...then I walk....that's why I arm myself with comfortable shoes!

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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Apr 27, 2017 03:08AM 2FUN wrote:

blooming, I got names from every person I knew who had any kind of cancer. Then I got names from every medical professional I know or have an affiliation with. Then I contacted the ones that were on both lists. The miracle for me in all of my health challenges this last year has been my breast surgeon. His office told me to worry about my job, home, finances etc, and let them worry about my medical issues. They guided me to great options for all my other problems that cropped up along the way. If you don't have one medical person to count on you will need to search it out on your own. Are there any cancer support groups in the area?

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Apr 27, 2017 03:11AM 2FUN wrote:

so my back pain that I have had for the last week and a half is not from my AI, but a bladder infection, again. Had one 4 days b4 MX, got another one 10 days later. Now 6 weeks out, another. I'm alergic to most antibiotics. ...bummer! Meds had to be special ordered as no.one in town stocks it, so I can't get meds till noon.

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Apr 27, 2017 05:22AM dtad wrote:

Hi 2FUN. So sorry you are dealing with frequent UTIs. It can be caused by a lack of estrogen. You might want to try a supplement called D Mannose to help prevent and treat UTIs. Good luck to all...

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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Apr 27, 2017 05:30AM ruthbru wrote:

also drink tons of water & cranberry juice......not just now, but every day

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Apr 27, 2017 02:32PM voraciousreader wrote:

organic cranberry concentrate juice..diluted with whatever you like. Most major supermarkets carry it on the top shelf in a small bottle. Other cranberry juices are a waste.

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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Apr 27, 2017 02:34PM voraciousreader wrote:

https://www.swansonvitamins.com/lakewood-organic-cranberry-concentrate-12-5-oz-370-ml-liquid?SourceCode=INTL4055&gclid=Cj0KEQjwrYbIBRCgnY-OluOk89EBEiQAZER58hJi2Zo3s3NNFS6y3yNU-lxPP6xU0MM9BnAXifBBPKYaAsqq8P8HAQ

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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Apr 27, 2017 02:35PM voraciousreader wrote:


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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Apr 27, 2017 03:26PM ChiSandy wrote:

Yes, I am perfectly fine with taking low doses of over-the-counter non-narcotic and COX-2-inhibitor painkillers, and so are my doctors. I took way more Tylenol than that—not to mention NSAIDs such as Aleve--when I still had osteoarthritis of the knees before my replacement surgeries (and while weaning off Norco & tramadol during rehab). None of my other meds contain acetaminophen (I avoid one-pill-does-it-all OTC cold remedies when I get sick), and that one time-release 1300mg. dose at bedtime does no harm. And the 200mg. of celecoxib is pretty much a “starter” dose. I certainly prefer taking those meds to suffering debilitating joint pain—whether from AIs or any arthritis in my body.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Apr 27, 2017 03:27PM ChiSandy wrote:

As to cranberry juice & UTIs, it’s not the cranberry part of it that works—it’s acidifying your urine to make it less hospitable to bacteria. Lemon juice or unsweetened lemon or limeade would work just as well, acc. to my GYN. (Cranberry just tastes better).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Apr 27, 2017 04:59PM Mommato3 wrote:

I started out on Tamoxifen for four months until we could see whether I came out of chemopause. I didn't have any side effects at all on it. Unfortunately, I became premenopausal again. I started getting Zoladex shots (until I had an ooph) and took Arimidex. I've been on it for two years now. My side effects have been minimal. Occasionally I feel a little achy, especially my knees. I don't always sleep the greatest, warm flushes occasionally and the texture of my hair has changed (But that's a good thing!). I think exercising has really helped. In the beginning I was walking about 5 miles a day, 6 days a week. I'm not walking quite as much and I can tell a difference in my knees if I go too many days in between. It's hard to tell if these issues are from the drug or going into menopause.

AC-THP UMX Dx 4/25/2014, IDC, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2+ Hormonal Therapy 4/20/2015 Arimidex (anastrozole)
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Apr 27, 2017 05:01PM 2FUN wrote:

thanks for all of the UTI wisdom....I have been dealing with this during my perimenopause years. I was doing great until my BC dx. I drink ten 24 Oz glasses of water, probiotics, cranberry tablets, vitamin c, a, and zinc, D-mannose, no sugar, no processed foods and limited carbs ( potatoes, rice, white flour etc). Daily exercise too. Anything to limit inflammation. I am alergic to most antibiotics, so that is my biggest concern. I LOVE my urologist, she is smart and compassionate, and always looking for new solutions. I'll stop complaining now. :)

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Apr 27, 2017 05:15PM Butterfly1234 wrote:

2Fun - no such thing as complaining. This is a safe place to vent and we're here to help. What helps one helps many. Hope you find some relief. UTI is not fun! Sorry I can't add anything to this discussion that hasn't already been suggested.

Thanks to all for keeping this thread going. Blesssings.

No matter what you look like or think you look like, you're special and loved and perfect just the way you are. Ariel Winter Dx 1/24/2017, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2017 Whole-breast: Breast Hormonal Therapy 5/9/2017 Arimidex (anastrozole)
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May 10, 2017 05:37AM Butterfly1234 wrote:

Checking in to say I'm on my second day of Arimidex and doing fine. I posted on another thread that last nightwas the first time in weeks I slept through the night. I'm going to attribute it to Arimidex. It's my story and I'm sticking to it lol

No matter what you look like or think you look like, you're special and loved and perfect just the way you are. Ariel Winter Dx 1/24/2017, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2017 Whole-breast: Breast Hormonal Therapy 5/9/2017 Arimidex (anastrozole)
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May 10, 2017 07:06AM Heidibird wrote:

If it helps you sleep, then I am jealous! LOL Good luck to you and all of us on our journey!

~Heidi

Dx 4/19/2016, IDC, Left, Stage IA, Grade 3, 0/2 nodes Surgery 11/9/2016 Mastectomy: Left Surgery Lumpectomy: Left Surgery
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May 10, 2017 04:58PM 2FUN wrote:

when I first started Femara I slept thru the night for the first week. I'm now back to waking up.at 4am, and falling asleep until 5


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May 10, 2017 05:51PM - edited May 10, 2017 05:52PM by mustlovepoodles

Don't remember if I weighed in on this thread, but I've been on Femara for 14mo and doing fine. Yes, I have pain in feet and knees, but that's because I'm 60 with severe arthritis and flat feet. Just had knee replacement 12 days ago and the knee is actually LESS painful now, than before surgery. Still taking an NSAID because i dont like narcotics.

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 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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May 10, 2017 10:44PM - edited May 10, 2017 10:46PM by Janett2014

Butterfly1234,

My MO said that Anastrozole makes some women sleepy, so I take mine at night. I don't really think it affects my sleep one way or the other though. Tonight I'm wide awake at nearly 1:00 a.m. which is not typical for me at all!

Diagnosed age 60 with IDC in 2014. Stage 1A, Grade 2, 0/10 nodes, ER+/PR+, HER2- Cancer on both sides, bilateral mastectomy, reconstruction with silicone implants, Oncotype 16, Arimidex (Anastrozole) 5 years. There are more details in my biography.
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May 12, 2017 08:16PM GrendelDog wrote:

Thanks for the great thread, everyone! Just took my first Anastrozole about 3 hours ago and was pretty nervous given the long list of SEs on the insert (and of course, what I've read on Dr. Google). Great to read about some good responses! Now I can head off to sleep with peaceful dreams -- hopefully :)

Dx 9/12/2016, IDC, Left, 3cm, Stage IIIA, Grade 2, 4/18 nodes, ER+/PR+, HER2- Chemotherapy 10/6/2016 AC + T (Taxol) Surgery 3/21/2017 Lumpectomy; Lymph node removal: Underarm/Axillary Surgery 4/3/2017 Lumpectomy: Left Surgery 4/26/2017 Lumpectomy: Left Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes
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May 13, 2017 06:24AM PugsMama wrote:

Butterfly: thank you for starting this thread & to all of you who have weighed in. I'm starting next month, you're helping me get there without an open mind & positive attitude!

57 at dx, married with 2 pugs 😄. Strong family history & BRCA2+. MammaPrint: Luminal B & High Risk. Surgery 2/18/2009 Prophylactic ovary removal Dx 12/1/2016, IDC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/4/2017 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 2/16/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/10/2017 Aromasin (exemestane) Surgery 8/2/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 13, 2017 06:37AM Tappermom383 wrote:

i agree, pugsmama! I'm choosing to steer clear of negative comments and wait and see how they affect me (I'll start in July).

MJ


Diagnosed at 70 after four excisional biopsies over the course of 47 years. MammaPrint came back Low Risk. DexaScan: osteopenia. Cancer removed was 1.8 cm. Dx 3/23/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/31/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 5/22/2017 Whole-breast: Breast Hormonal Therapy 7/17/2017 Arimidex (anastrozole)

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