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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Aromatase Inhibitor and just walking away.

Topic: Aromatase Inhibitor and just walking away.

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: Apr 22, 2016 07:06AM

MT1 wrote:

I was premenopausal at diagnosis. 100% ER/PR+. I took 5 years of tamoxifen and just three months ago switched to femara. I don't want to do this anymore. I want to stop taking the drugs and walk away. Have any of you decided to follow a similar path? If so, can you tell me about your decision making process and how you feel about it now?


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Aug 9, 2017 12:38PM Momine wrote:

Scared, that nutritionist doesn't know what he/she is talking about.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Aug 10, 2017 02:00PM Bethy9001 wrote:

I was told talking the med would only give me a7% more chance of non recurrence. I have an 85% without and 93% with. I would like to find others ways through diet and exercise and supplements but not sure where to find credible information.


Dx 6/5/2017, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/10/2017 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 10, 2017 02:27PM marijen wrote:

Here you go Bethy - try this link:

https://community.breastcancer.org/forum/121/topic...


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Aug 10, 2017 05:36PM - edited Aug 10, 2017 06:35PM by hippiegirl

This Post was deleted by hippiegirl.
Dx 2/2017, IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/27/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy
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Aug 11, 2017 05:07AM dtad wrote:

Hi Bethy...I refused anti hormone therapy from the start. There were several reasons why I chose to go this route. Since my diagnosis I have been trying to lower my estrogen levels naturally. Please feel free to PM me if you want to talk more. 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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Aug 11, 2017 02:25PM SJI wrote:

Bethy and dtad: I'm choosing not to take anti-hormone therapy - mostly because it only lowers the risk from 12 to 6 percent or 8 to 4 percent depending if I calculate from the higher or lower range risk number I was given. My main reason is my anti-depressants aren't compatible with the anti-hormone therapy and I've literally tried all the ones that are compatible. It was really difficult to find a combination of meds that relieve my depression and I'm not about to mess with it. I'm exercising vigorously three hours a week. My MO says 150 minutes of exercise reduces recurrence risk by 40 percent. (The numbers above had the exercise factored in.) I am also losing weight which I think would help but he said it wouldn't make much difference risk-wise. I'm still dedicated to doing it. I've lost 10 pounds since finishing rads on June 28. Of course I gained 16 pounds between diagnosis and end of rads. Comfort eating.... But at least I'm headed in the right direction.

Like you I wish there was reliable info on ways to reduce risk. I also wish there was a study we could sign up for so data could be collected and comparisons made to others who are taking anti-hormone therapy.

I registered for the Sept. 22-23 Northwest Metastatic Breast Cancer Conference: Living Well. Living Longer, in Seattle. I'm just going on Friday since it is open to people that don't have metastatic cancer:

Friday, September 22
We'll focus on "breast cancer rehab" with sessions on integrative care, inflammation and disease and nutrition as medicine. The goal of these sessions is to help you manage better during treatment, heal afterward and in some cases lower recurrence/progression risk. Friday will be open to breast cancer patients of any stage and subtype and their caregivers.

http://komenpugetsound.org/nwmbcc/ breast cancer

You can also register to watch the conference online.

Onctype 11, Completed 16 radiation treatments plus 4 boosts on June 28 Dx 2/3/2017, ILC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 3/30/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 5/30/2017 Whole-breast: Breast Radiation Therapy 5/30/2017 Whole-breast: Breast
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Aug 11, 2017 10:59PM ChiSandy wrote:

Thanks for catching my typo (actually, brain fart), Jennie. I made the correction.

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- Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 11, 2017 11:27PM - edited Aug 27, 2017 11:14PM by ChiSandy

Scaredashell, how's your hip? Have you seen an orthopedist (regular or sports-medicine)? Your symptoms sound exactly like mine in early 2015 (before breast cancer). The sports med ortho did an ultrasound and found a big honkin' bursa over the precise spot on my hip from which the pain was radiating. He did a cortisone shot, which helped a bit. After I got home from a trip to Spain (where I was cane-dependent the whole time), I had an MRI which revealed I had a torn gluteus medius muscle. Did the math in my head and realized the pain started the day after I had shoveled snow and then walked 1/2 mi. ea. way through 3' snowdrifts to & from a Super Bowl party. It led not just to the muscle tear and bursitis, but also iliotibial (IT) band syndrome. Eventually, P.T., Flector and lidocaine patches, plus the shot, healed my hip (it took about a month).

And getting medical oncology advice from a nutritionist (BTW, anyone can call themselves a nutritionist regardless of credentials) is like getting nutrition advice from your hairdresser or fashion tips from your oncologist. (I'm not giving orthopedic advice, but rather urging that you seek it from an orthopedist).

Finally, any time I see a book, website, or article with the words “the Truth" in it, I hear the sound of rubber ducks in the distance. And it always turns out to be quackery. (Christofferson—not a doctor, biologist or nurse--is a disciple of Joseph Mercola, who is that rare quack who also is an MD). There is a thread on the Alternative forums about treating estrogen+ bc naturally. The Alternative forums, according to the Moderators, are not intended to be an endorsement of alternative or natural remedies, but rather a safe and non-judgmental harbor for those who choose to spurn conventional treatment. This forum is not, and calling out quackery, fakery, and woo here is fair game.

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- Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 12, 2017 05:38PM Bethy9001 wrote:

thank you

Dx 6/5/2017, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/10/2017 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 13, 2017 08:21PM Cdore wrote:

Thank you so mucgv

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Aug 20, 2017 12:18PM LindaKR wrote:

scaredashell07...not sure where your nutritionist got that Info. Without ovaries our oldies still make estrogen in the adrenal glands and fat cells, which is why we are taking the aromatase inhibitors, it stops that process.

Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema. Dx 3/19/2010, IDC, 4cm, Stage IIIA, Grade 2, 5/18 nodes, ER+/PR+, HER2+ Surgery 4/2/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 5/15/2010 Herceptin (trastuzumab) Chemotherapy 5/15/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 9/15/2010 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Radiation Therapy 9/25/2010 Whole-breast: Breast, Lymph nodes, Chest wall
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Aug 21, 2017 08:44AM - edited Aug 21, 2017 01:39PM by marijen

Estrogens can be produced by fat tissue, the liver, the adrenal glands and the ovaries. The ovaries are the primary source of estrogens in premenopausal women, except for women who are pregnant. Estrogen production from the ovaries begins with the theca interna cells, which convert cholesterol into a hormone called androstenedione. This hormone is then exported to other cells within the ovaries, called the granulosa cells. These cells convert the adrostenedione into estradiol. During pregnancy, estrogen production is taken over by the placenta. After menopause, the ovaries stop producing estrogens and it is instead made by the adrenal glands, the liver and the fatty tissue within the breasts.

http://www.livestrong.com/article/23846-estrogen-p...




The related hormones that make up the family known as estrogen include estrone, estradiol, and estriol.

Estrone (E1)

Estrone is considered a weaker form of estrogen and is the major estrogenic form found in naturally menopausal women who are not taking hormone replacement therapy (HRT). It is the only estrogen that is present in any amount in women after menopause.

Estrone is the least abundant of the three hormones.

Estrone is made in small amounts in most tissues of the body, notably fat and muscle.

Estradiol (E2)

Estradiol is the most potent form of estrogenic steroids produced by ovaries and exerts the fullest range of estrogenic effects. When estradiol reaches the tissues, it connects with estrogen receptors to trigger specific activities in those tissues and cells.

In addition to being produced by ovaries, estradiol can also be produced by conversion from a number of precursors in the adrenal glands and the placenta.

Estradiol is thought to contribute to many gynecological problems such as endometriosis, fibroids, and even female cancers, particularly endometrial cancer.

Estriol (E3)

Estriol is a metabolic waste product of estradiol metabolism that has some effects on a limited number of estrogen receptors.

Estriol is only produced in significant quantities during pregnancy.

Estriol is made by the placenta from 16-hydroxydehydroepiandrosterone sulfate (16-OH DHEAS)4, which is an androgen steroid made in the fetal liver and adrenal glands and is 8 percent as potent as estradiol and 14 percent as potent as estrone.


http://www.medicalnewstoday.com/articles/277177.ph...


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Aug 21, 2017 05:25PM marijen wrote:

Management of AI joint pai
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC28267...


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Aug 21, 2017 06:17PM Brutersmom wrote:

I met with my MO today and told him that the side effects were so bad on Als that I could not continue. He was not happy but did not do any guilt tripping. He encouraged me to consider trying again in 9 months. Unlike my family Dr, the surgeon, and the nutritionist, the MO he did not feel that weight loss and exercise offers that much benefit. His only guilt trip was he said that most of his patients stuck it out for at least 2-3 years. AS I was check out I has a fun conversation with the staff at the check out. They were curious why 9 months and I told them that I felt I had to stop Als. They asked me if I was just walking away and I told them about my change in nutrition and exercise. They applauded me. They said they see so many women suffering on the drugs. They said that many women suffer for just a 2-6% benefit when if they took charge of their health they could achieve a similar benefit and be healthier.

Diagnosed at 62, No lump, found on a routine mammogram Dx 7/29/2015, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 8/19/2015 Lumpectomy: Right Radiation Therapy 9/27/2015 Whole-breast: Breast Hormonal Therapy 10/24/2015 Arimidex (anastrozole)
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Aug 21, 2017 07:46PM - edited Aug 21, 2017 07:47PM by Artista928

The few % benefit is not on it's own, assuming your #s are very low for recurrence. On it's own it's much higher. It's 3-4% additional benefit vs Tamoxifen.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Aug 21, 2017 08:29PM Jojo0529 wrote:

so interesting. I recall reading something about statins reducing breast cancer risk. It must be due to the cholesterol

ONCO 17 ....ki-67 25% miotic 1. Dx 7/30/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/19/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left Chemotherapy 9/2/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/30/2015 Arimidex (anastrozole) Surgery 1/10/2016 Prophylactic ovary removal; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement
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Aug 21, 2017 08:37PM Brutersmom wrote:

I was told by the MO that my risk is 20% with nothing 16% with Tamoxifen and 12-14% with the Als. When you have no quality of life on the drug. Loss of vision, loss of hearing, anxiety attacks, inability to sleep, (average was 2-3 hours/night), not able to tolerate anything touching my skin, feeling like my insides were shaking, those odds don't seem so bad. And if I continue to lose weight, exercise several times a week, (strengthening and aerobic) and eat a healthy diet the 20% goes back down and my health in general improves. Might not be for everyone but I prefer to live life then exist like I did for 15 months.

What this really says to me is we need better treatment options. To many women are forced to suffer for a relatively small benefit and so many dangerous or debilitating side effects.

Diagnosed at 62, No lump, found on a routine mammogram Dx 7/29/2015, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 8/19/2015 Lumpectomy: Right Radiation Therapy 9/27/2015 Whole-breast: Breast Hormonal Therapy 10/24/2015 Arimidex (anastrozole)
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Aug 22, 2017 05:08AM dtad wrote:

Brutersmom...I completely agree with you! Most MOs know very little about female hormones so I'm not surprised he was unaware of the benefits of weight loss and exercise lowering recurrence rates. The are all hard decisions but we have to do what feels right. Good luck and keep us posted.

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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Aug 22, 2017 06:16AM marijen wrote:

Long list of inactive ingredients here with descriptions..


https://www.drugs.com/inactive/


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Aug 22, 2017 09:04AM marijen wrote:

Drugs.com has medications reviews - here's a good one. I know everyone is different. But I often wonder if cancer goes to weak or injured areas in our bodies.


"I would give a lot to have NEVER taken Femara! It aged me 20 years in a few months. I took it for more than six years before I told my oncologist I would not take it any more. It was killing me! I was sleeping an average of two hours a night......a "good" night was five hours every ten to fourteen days. The other side effects were awful! Femara did NOT keep the cancer from coming back! It is KNOWN to weaken the bones, and the cancer is now rampant in my bones!"


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Aug 22, 2017 09:48AM BosumBlues wrote:

I guess that is the premise of taking the bone strengthen drugs to prevent bone mets. My MO no longer prescribes them for that purpose as she says the SEs outweigh the research benefits though I know other doctors feel differently.

Dx IDC
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Aug 22, 2017 10:27AM Hopeful82014 wrote:

Brutersmom -

You wrote, above, "AS I was check out I has a fun conversation with the staff at the check out. They were curious why 9 months and I told them that I felt I had to stop Als. They asked me if I was just walking away and I told them about my change in nutrition and exercise. They applauded me. They said they see so many women suffering on the drugs. They said that many women suffer for just a 2-6% benefit when if they took charge of their health they could achieve a similar benefit and be healthier."

While I have NO doubt that exercise and excellent nutrition can make a great difference, I find it extraordinarily inappropriate that the reception staff at any MO's office would be commenting on the putative percentage of benefit of ANY treatment decisions, much less a decision to swap exercise and lifestyle changes for an AI.

Most reception staffs are caring, skilled and compassionate women (usually) but I'd never solicit nor accept their advice on treatment decisions over my MO's advice. I'm just shaking my head over their response.

Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-
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Aug 22, 2017 10:28AM marijen wrote:

That's right BB, well maybe that's why my pain has started up. It's been over a year since last reclast infusion. And got sloppy with the calcium. I'm not big on something made from limestone (Tums). But then I bought a bone strength supplement and gee whiz - the inactive ingredients are worse than the Letrozole. I hope they figure it out one of these days. Then again, there are only two million survivors still suffering (sarcasm).

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Aug 22, 2017 10:56AM BosumBlues wrote:

Marijen, there are no easy answers. Lately I am really struggling with all of this. I had been anxious to hopefully get off the AIs after 5 years but very recently that prospect sounds frightening too. I am seeing so many recurrences years out. Perhaps these drugs give me a false sense of security but as of now I need that mental crutch.

Dx IDC
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Aug 22, 2017 10:57AM marijen wrote:

I know exactly how you feel BB.

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Aug 22, 2017 11:02AM azb2005 wrote:

Wow I am so grateful for all I've read here this morning. I am new to the forum. I had my BMX on 7/20, with expanders, thinking I was going to do reconstruction. I've decided against that, and staying flat. Awaiting a surgery date. But this is off this particular topic...

My medical oncologist prescribed Anastrozole and I am really struggling with whether or not to take it. I'll be 63 on Sunday, and other than this damn cancer have been a healthy, active person. I don't see the statistics as being so staggeringly different with or without, so I'm seeing my regular MD on Thursday, who is also an Integrative doc...hoping to make some sense out of all of this.

Thank you all....such GREAT information here!


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Aug 22, 2017 11:05AM BosumBlues wrote:

AZB, definitely try the blockers. Also know if one gives you SEs the others may not.

Dx IDC
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Aug 22, 2017 11:21AM chef127 wrote:

Is there even just one BC Tx (after surgery) that is not a hazard to our well being? I had a lx which showed one dirty margin, the ca was on my skin which automatically put me in stage IIIB and chemo was a given. I REFUSED! so I did the rads (kicking and screaming) to avoid another surgery. I refused rads to the underarm even tho there was a LN infected with ca. Now you want to possibly take away the use of my arm from LE. another serious hazard. F--K ME! When I researched the next option of depleting all my estrogen I was floored. "You want me to do What"? I lied to my MO and made up se's and started with Arimidex to Femera to tamox. Never happened. I swallowed one pill and tossed the rest. ER+96% PR+85%. Sounds like a death wish, but for me all those tx's sounded like death or poor QOL.

It''s been 6 years now NED, this week in fact. Was I over dx'ed?, is the E+P+ not a factor in my case? IDK, researchers and drs don't know. so to be safe we'll put you through hellish tx and hope for the best.

Until they can find a BC tx that does NOT take away our hormones we will continue to suffer the ravages of tx. I empathize with anyone suffering for the 5-10-lifetime of toxic tx. I have no idea why I'm still NED, my weight is good, I smoke, my diet is so-so.....and I avoided most tx. I'M A VERY stupid, bad girl.

Marijen, sorry about your bones, I had no clue. Is it possible the AI's contributed? very curious ??????

Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/3/2012 Breast
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Aug 22, 2017 11:28AM BosumBlues wrote:

Chef, I just love your spirit!

Dx IDC
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Aug 22, 2017 11:28AM marijen wrote:

Thanks chef, we need to hear from brave ones like you. My endocrinologist has refused to do a bone scan from the first six months on Letrozole, so I have no idea now, even though my results were worse nearly two years ago. Next appt is in Nov. I think he must hate women. I think bone scans can be done more often with reason. Anyways, I'm off to the LE Pt now. It's been since May 2016 I have lymphedema. It's slight but painful and annoying! I'm in the middle now. My eyes have started to act up - vitreous detachment and ERM.

Anyways, chef, please keep posting your story.

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