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Topic: Refusing hormone therapy

Forum: Canadians Affected by Breast Cancer —

Canadian health care, clinical trials, and life in general in the north.

Posted on: Jul 11, 2018 04:39PM

Crosbyfan1987 wrote:

has anyone here refused to take either their Tamoxifen or AI?

Dx 1/31/2018, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 3/12/2018 Lumpectomy; Lymph node removal: Sentinel
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Jul 11, 2018 05:11PM Pi-Xi wrote:

I wanted to avoid tamoxifen for DCIS so I had a BMX for which the pathology showed invasive cancer and now I've been taking the drug for nearly two years.
Oncotype 12 Dx 4/7/2016, DCIS, Left, 2cm, Stage 0, Grade 1, ER+/PR+ Surgery 7/11/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 8/3/2016, DCIS/IDC/IDC: Papillary, Left, 1cm, Grade 2, ER+/PR+, HER2- Hormonal Therapy 9/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 12, 2018 12:28AM WC3 wrote:

What are your concerns about the hormone therapy?

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Jul 12, 2018 08:02AM dtad wrote:

I refused anti hormone therapy from the start. I'm over 3 years NED. So far so good! Its a very personal decision and I'm not advocating it for everyone. Please let me know if you want more details. 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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Jul 12, 2018 09:39AM Crosbyfan1987 wrote:

WC3 I am concerned about the side effects.

Dtad yes I would like more details thanks.

Dx 1/31/2018, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 3/12/2018 Lumpectomy; Lymph node removal: Sentinel
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Jul 13, 2018 07:52AM dtad wrote:

Hi everyone...To start I had a debilitating autoimmune disease at the time of my diagnosis. My QOL has been poor for over 15 years. I was just not willing to risk it getting worse. I also did not like the fact that hormone levels were not checked before, during and after anti hormone therapy. The only way to know if it was working was to wait and see if you have a recurrence! That just seems crazy to me. So I did tons of research and decided to try to lower my estrogen levels naturally. I lost 30 pounds, exercise daily and take several supplements. I take DIM in leu of an aromatase inhibitor. I also take melatonin, baby aspirin, mushroom extract and berberine to regulate my blood sugar. So far this is working for me. 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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Jul 13, 2018 07:54AM Meal1980 wrote:

following

Camille
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Jul 13, 2018 07:57AM dtad wrote:

Meal1980...just curious what you mean by following

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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Jul 13, 2018 07:57AM Meal1980 wrote:

Can't find DIM in the abbreviation explainer... help?

Camille
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Jul 13, 2018 08:01AM dtad wrote:

DIM is a group of crucerifous vegetables. The theory is that it lowers the bad estrogen that causes breast cancer but not the good estrogen that we need for every other organ in our bodies. Hope that helps

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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Jul 13, 2018 08:02AM - edited Jul 13, 2018 08:04AM by Meal1980

just wanted to post that I am reading along...that way I will get an email when someone replies.

lol.. or I thought thats how it works.

Camille
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Jul 13, 2018 09:22AM Crosbyfan1987 wrote:

Yes I heard about that.

Dx 1/31/2018, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 3/12/2018 Lumpectomy; Lymph node removal: Sentinel
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Jul 16, 2018 08:33AM kaylie57410 wrote:

hi to all-felt compelled to respond here-we all want to avoid medication side effects when the downside outweighs the good effect=so much of the theories of supplements,herbs,dietary guidelines are only theories-=unproven by scientific facts to back what are often false claims.Much of what you read on the internet is just not true-as to alternative treatments which people elect to use INSTEAD of proven medical treatments=as opposed to complementary treatments that help cope/feel better overall with this disease and treatments-but dont treat the actual cancer.

Dont make the life threatening mistake of thinking you know more than your doctors and careteam about how to successfully treat your breast cancer---wake up call--you dont!They are experts at the top of their game and are trying to save us!

dtad=am glad you are doing well-and you certainly can have your levels tested-is what pre menopausal women have done to find out when menopause is occuring=there is not good estrogen and bad estrogen affecting different organs-is just estrogen.Good for you that you are 3 years out with NED---yet---that is the key word here--yet---is well shown that recurrence is at highest risk in the first 3 of 5 years,and there is a 40%plus reduction in this risk with a hormone blocker-you had 2 kinds of cancer of intermediate grade as to aggressiveness with ILC being known to put you at higher risk for recurrence. Mastectomy has not been shown to eliminate recurrence risk any better than lumpectomy with radiation

I am a long time RN ,skilled at seeking out academic research==dx'd a year ago with stage 2 early breast cancer=had lumpectomy,radiation,4 rounds chemo-breezed thru that and saved my hair with cold capping-=yeah!!-and now entering my 6 month of letrozole with minimal side effects-some sleep disturbances,achy feet and knees first thing in am-resolves with advil and stretching exercises,and mild dysparunia-easily dealt with with non water based lubricants

We are all individuals with our own circumstances,yet ladies--do trust your doctors advice -we are in a fight for our lives over the long haul-give yourself the best possible odds at a long life ahead=hugs to all,Kaylie

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Jul 16, 2018 09:23AM - edited Jul 16, 2018 09:24AM by Legomaster225

Crosbyfan, would you consider taking the tamoxifen or an AI and see if you have side effects? I did not have experience with an AI (yet) but the onlyside effect I have from tamoxifen is possibly short sleep cycles. I have never been a good sleeper and always a night owl. Really nothing else has bothered me. Many women do have side effects, many women do not. I don't think those without side effects post as much either out of respect/guilt for those who do. If your concern is just side effects maybe you could try it and see how your body reacts. I know I was terrified to take tamoxifen after reading some of the posts on this board but really the side effects have not materialized for me. At least not yet. I will be switching to an AI at the end of the year based on my menopause bloodwork. The saga continues but I am happy to have a proven medication to help my odds. Everyone had to make their own decisions though. Best of luck to you💕

Diagnosed at 50. Currently 52. Oncotype score 39. One node positive at diagnosis negative after preadjuvent chemo. Bilateral cancer discovered at BMX. Left breast was supposed to be prophylactic. :-( Dx 12/3/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Chemotherapy 1/19/2017 AC + T (Taxol) Surgery 6/21/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 6/22/2017, IDC, Left, <1cm, Stage IB, Grade 1, 0/0 nodes, ER+/PR+, HER2- Dx 6/22/2017, DCIS, Left, <1cm, Stage 0, Grade 1 Radiation Therapy 8/21/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/16/2017 Hormonal Therapy 9/8/2018 Aromasin (exemestane)
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Jul 17, 2018 07:42AM - edited Jul 17, 2018 07:44AM by dtad

Kaylie57410....I found your post very offensive. I'm also a RN. Who are you to judge me? You have no idea what my individual circumstances are and what lead to my decisions. Scare tactics are completely unnecessary. I pretty much disagree with everything you said. Lets please try to be respectful of others decisions. We are here to support each other. You do you and I'll do me!

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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Jul 17, 2018 05:37PM kaylie57410 wrote:

not judging you in any way- just expressing concern that others trust and listen to their doctors-who have the expertise to guide us in an informed ,expert manner based on each of our situtations for the best possible outcomes according to scientific evidence and clinically proven treatment methods. No scare tactics -am stating the facts and known statistics that are widely available to seek out and acquaint oneself with--Am sorry if what I have stated scared you-- but it is the reality of having had breast cancer-and the uncertain future each of us is facing==best to you and I wish you good luck as you move forward,Kaylie

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Jul 17, 2018 05:58PM edwards750 wrote:

Kaylie -frankly I was afraid not to go the conventional route. I decided it was like playing Russian roulette with my life but that’s me.

I live in Collierville, a township outside Memphis. As you probably know St. Jude is located in Memphis. I remember when Steve Jobs was DX with cancer and decided to go the other direction. His family begged him to seek treatment. When he finally decided to do so at St. Jude it was too late. That has always haunted me for some reason.

BC isn’t a one size, fits all disease and it is a personal choice as to surgery and treatment. We all have to live with our decisions and the consequences from those decisions.

Diane



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Jul 25, 2018 06:11AM - edited Sep 15, 2018 07:08PM by Jadedjo

This Post was deleted by Jadedjo.
iPhone.iFatfingers.iAutocorrect.iSorry. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 25, 2018 06:37AM - edited Jul 25, 2018 06:39AM by Amica

Dear JadedJo

I hear you. Doctors do miss a lot and they misdiagnosis. They discount valid symptoms and write them off as all in your head, or you're being a hypochondriac. BOTH of my breast cancer occurrences were discounted and not taken seriously. I found my first lump in my 30s, my doc said I was too young to have breast cancer and that caused a delay of over a year. And my recent reoccurrence was written off by my doctor and not taken seriously, she blithely said "no one gets a reoccurrence after 20 years.") Well I guess she was ignorant of the facts. It turned out to be metastatic breast cancer.

So, I question everything they do, and am skeptical and try so hard to advocate for myself, even though as a patient you are somewhat at their mercy. The medical system should be fighting for us, instead of us having to fight for care, but that is how it feels to me. It is exhausting having to fight for decent medical care.

Power to you!

love,

Amica

1998 at 39 Stage 2 IDC, 1/16 nodes, ER/PR +, HER2-,Gr 3, surgery, AC + Taxol, rads, oopher/hysterectomy, Tamoxifen, Aromasin completed 2010 - Aug 2018 metastatic recurrence Stage IV, ER+ PR- HER2-, Gr 3, Sept 2018 Letrozole/Ibrance, Prolia
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Jul 25, 2018 08:01AM NotVeryBrave wrote:

This is an endless subject brought up here. The recommendation is for endocrine therapy for hormone positive patients. That has been scientifically proven to reduce the risk of recurrence by almost half.

However - there are no guarantees. We all know patients who have done everything possible and still had a recurrence. As well as some who have gone against medical advice and done well. My position is that we are all individuals and really have to make the choice that's best for us.

If I explain what I've done and why, that doesn't mean I'm trying to make others follow me. Some do very well on these medications and others do not. I had excruciating leg cramps while on Tamoxifen - so much so that I slept terribly and hobbled around every day, despite trying every possible remedy. I also had the ridiculous vaginal discharge constantly. But worst of all - I felt like something was happening to me mentally and emotionally. I couldn't think normally and couldn't cope.

The rational part of me understands that other things could have contributed to the brain problems - lack of sleep being one. But I felt that things continuing to worsen over 3 months was enough for me. And still - part of me realizes that Tamoxifen could make the difference of whether or not the cancer returns.

I was triple positive but had a great chemo response. I've had a BMX. I feel like my risk should be pretty small. But it will never be zero. And I'm the person that will beat myself up over a recurrence if I don't do what is recommended. Sometimes I wish I was triple negative and didn't have to do any more. And many of those patients wish they could do more, wish they had these drugs.

So I intend to try again, but this time I'm starting at 5 mg and slowly working my way up. I don't have much faith in this, but I feel I have to try. I've read some promising research on drastically lower doses so if 20 mg doesn't work but 15 or 10 or 5 does then I'll do that. And if all of it is crap and I start feeling horrible again - well, at least I tried.


TCHP x 6 with pCR. One year of Herceptin. DTI pre-pec surgery. Quit Tamoxifen after 3 months. Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/18/2016 Perjeta (pertuzumab) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/9/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 25, 2018 08:05AM dtad wrote:

Hi everyone. I didn't want to be a Debbie downer but I've also had horrible experiences with docs and conventional medicine. They certainly are not infallible and thats why I took offense to Kaylie's post. Ive experienced life threatening side effects from drugs. We all have different experiences that influence our decisions. We have to be respectful of that. 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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Jul 25, 2018 08:09AM viewfinder wrote:

"Can't find DIM in the abbreviation explainer... help?"

LOL Meal1980, I'm quite new to this forum and sometimes I feel like I'm reading a foreign language with all the abbreviations (oops, I just used one). Loopy


Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes
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Jul 25, 2018 08:19AM dtad wrote:

DIM is a supplement made of a group of crucerifous vegetables. Its suppose to lower your estrogen more naturally. Ive been taking it in leu of an aromatase inhibitor from the start. I'm 3 plus years NED. It was the right decision for me, but a very personal one. 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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Jul 25, 2018 10:31AM - edited Sep 15, 2018 06:02PM by Jadedjo

This Post was deleted by Jadedjo.
iPhone.iFatfingers.iAutocorrect.iSorry. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 25, 2018 10:43AM - edited Jul 25, 2018 10:48AM by viewfinder

kaylie57410, I personally found your post helpful. Sometimes we need a jolt to put our perspective in balance.

I was diagnosed with breast cancer in April, recently had a lumpectomy and awaiting visits with an oncologist to go over my options.

I have a friend who was a top-notch nurse (cardiac and emergency room). About 15 years ago, she got cancer and had a full mastectomy, went through the radiation, chemo and took tamoxifen. At the same time, one of her fellow nurses got the same type of cancer. My friend's doctor urged her to have aggressive treatment and she followed the advice. Her fellow nurse opted for less aggressive treatment. She died a few years later, my friend is still alive and kicking.

Cancer is a very serious disease and all options should be weighed and understood. For those who have side effects, a possible lower quality of life is better than no life at all. Countless people with breast cancer have survived because of treatment.

Unfortunately, people in the medical profession are human and, like all of us, make mistakes. Yes, we need to have a healthy dose of skepticism and advocate for ourselves, get second opinions when necessary, but give very serious weight to our doctor's advice.

Dx 4/2018, IDC, Left, <1cm, Grade 1, 0/2 nodes
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Aug 17, 2018 12:43PM zeldabug wrote:

Hello Everyone

I had DCIS. I had a mastectomy in April (4.5 months ago). I met with the medical oncologist last month. They are recommending aromatase inhibitors.

For more than 12 years I have been dealing with depression and ptsd. Apparently aromatase inhibitors can cause depression. At this point I can't imagine starting a medication that may cause depression........ I asked if there were alternatives. I was told "no. that's it" I asked what happens to women who cant tolerate the side effects (whether it is achey muscles depression or whatever)...again I was told "there is nothing else. that's it. you are between a rock and a hard place". I told the onc I would think about it. They seemed very suprized/annoyed.

Im annoyed and fed up too. Im also VERY annoyed that the literature refers to people who can't tolerate the side effects of hormone therapy as "non compliant". Non compliant women. Why not "unbearable side effects"

Anyway, I could go on and on.

If anyone has any ideas or thoughts, id love to hear them.

ZeldaBug

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Aug 17, 2018 01:43PM carmstr835 wrote:

I took arimidex as neoadjuvant therapy for 3 months prior to my chemo and surgery. It raised my Blood pressure and cholesterol. I was put on BP medications, but opted out of cholesterol medication. When the chemo began in May, I stopped the arimidex with the understanding I would take tamoxifen after the chemo. When I finished my chemo I decided against the tamoxifen for fear of the cognitive decline I was told about by my oncologist. He was not happy and still believes I should be on an anti-hormonal drug. I am only 1 year post diagnosis and my concern is keeping my cognition as long as I can. I have chemo brain from the chemo drugs that hopefully will improve, but my concern is tamoxifen is for 10 years, I don't want to live with this chemo brain for another 10 years. If my cancer does metastasize and it is hormone + still, then I will take an anti hormone drug, because I do know it works on my cancer. Then it will be to extend my life, no longer a cure. The pathology showed marked improvement had occured after my surgery with just a couple weeks of arimidex. I guess it is your choice as to the quality of life you can live with. I need to be able to think.

Dx 3/1/2017, DCIS/IDC, Both breasts, 1cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR-, HER2+ (FISH) Hormonal Therapy 3/21/2017 Arimidex (anastrozole) Surgery 3/26/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 5/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 6/26/2017 Herceptin (trastuzumab) Chemotherapy 6/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/27/2017 Perjeta (pertuzumab) Radiation Therapy 9/10/2017 Breast, Lymph nodes, Chest wall Surgery 7/9/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 10/15/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Targeted Therapy Nerlynx
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Aug 17, 2018 02:35PM Yaniza wrote:

I opted not to take tamoxifen. After a chat with the oncologist I decided that the side effects... including an increased risk of uterine cancer were not worth it.

I opted for a bilateral mastectomy although I was only diagnosed cancer in one breast. I had no chemo and no radiation because it was a bilateral mastectomy .My cancer was estrogen receptive.



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Aug 17, 2018 02:49PM - edited Aug 17, 2018 02:51PM by Yaniza

I should say also that my margins and my lymph nodes were clear. And I'm not sure how I would have felt if the news had have been worse... perhaps I would have appreciated more medical interference.

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Aug 18, 2018 10:42AM - edited Aug 18, 2018 10:51AM by kaylie57410

Zelda bug==yes,aromatase inhibitors can have side effects as can many medications-but they affect everyone differently--I have been on letrozole for 6 months with minimal side effects--fatigue and achy feet/knees in the morning that clear with advil and moving around--thats it-very tolerable--remember the hormone blockers cut your recurrence risk in half-and as stage 2-you are at higher risk for recurrence than some--if you don,t do all you can to cut the risk down and then have that recurrence--how depressed will you be then???.You have had surgery to rid yourself of this dz, please dont backtrack now---remember you can always stop the blockers down the road at any time-but give yourself the best possible shot at a long life ahead--really--Kaylie

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Aug 18, 2018 10:46AM - edited Aug 18, 2018 10:48AM by kaylie57410

,Zeldabug-- oops=misread your dx situation-sorry-I see you had DCIS, not stage 2-but advice the same--best to you,K

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