Anyone NOT elect to do Hormone Therapy?
Comments
-
Hello out there! I was diagnosed with breast cancer 6 weeks ago. I am 57 years old. A month ago I had a lumpectomy and will start 6 weeks of radiation next week. I had IDC, Stage 1a, Grade 1...clean margins and clear sentinel node....I met with my oncologist yesterday and he recommended I start hormone therapy for 5 years. After looking at all the side effects and getting my reoccurrence stats, 90% chance of NO reoccurrence if I choose not to do hormone therapy, and 95% chance of no reoccurrence if I choose to do hormone therapy, but I have to deal with all the side effects, I decided NOT to do hormone therapy.
Anyone else out there make this decision? How are you doing?
Thanks!
HersheyPassion -
HersheyPassion--I too was stage 1, grade 1, with clean margins and nodes--at 71--and decided to decline hormonal therapy. After serious research about these drugs, I wasn't concerned about the transient side effects (like hot flashes, etc.) of either tamoxifen or an AI, but I was concerned about the deleterious long-term health effects of both types, like stroke and blood clots for tamox and osteoporosis for AI. And, as I pointed out to the med. onc. I saw (once), it certainly doesn't make sense to take a drug like tamoxifen that creates weight gain when weight gain is known to increase one's risk for a recurrence or a new cancer. (She really had no answer to that observation, by the way!)
Furthermore, when I calculated my mortality and survival stats using the "cancermath" algorithm (created by folks at Harvard, MIT, and Mass. General Hosp.--http://www.lifemath.net/cancer), I learned that either hormonal therapy would lengthen my longevity by only 2 months (to 88 and 2 months)! This was quite a different prediction from the one provided by the AdjuvantOnline algorithm, which I discovered was created by and is promoted by the marketing arm of the drug industry, by the way.
It is now two years (tomorrow) from my surgery, and I have had clean mammos, good results from clinical exams, and am feeling great--even moreso because I know I am not increasing my risk for a stroke, deep vein thrombosis, or osteoporosis. My surgeon and rad onc are continuing to follow me, since I have no need for a med onc without a drug treatment, but need diligent monitoring, obviously. To lower my risk, I am faithfully continuing my workout and daily walking regimens, am cooking even more healthily than before (a bonus for my husband too), and have lost 15 pounds to bring my BMI to normal. .No regrets!
-
Hi tgtg, your reasoning makes sense at your age, not sure someone who is 15 years younger should follow the same path. I would seek a second opinion and if a second MO recommends hormonal therapy I would follow the recommendation.
Btw, he side effects are often overrated if you judge by the number of postings on this site. People with no or minimal side effects don't post.
-
I decided not to take Tamox due to side effects and low onco score of 11. Next month I will turn 50 and on that same day I will be 5 years out. It's a very hard decision to make..But, I'm happy with mine..
-
I opted out of Hormone Therapy. Had lumpectomy and 4 sentinel nodes removed. Had mammosite (5-day internal radiation). No other treatments.
-
Thanks for sharing your story and thoughts! I too exercise daily and have a healthy diet, which includes green drinks, juicing, green tea, organic produce....I eliminated meat,dairy, sugar, gluten, and reduced alcohol to 2 drinks a week! I will continue in this healthy lifestyle fashion!
-
I am taking a break after 3 months on Tamoxifen, constant fatigue, horrible insomnia and lack of concentration. I have been off it about a month and still getting occasional hot flashes (I had none before I started it) and I feel I am getting my concentration for work back and although my sleep is always bad I am managing to get back to sleep which I could not do on tamox.in spite of various OTC and prescription pills. I normally take Unisom and they can interact with it although onc did not seem over concerned when I started tamox. but even they stopped working in the large doses, which was not what he intended. I will try and give it another go soon but if I cant sleep or think then I may give it up for good. I am only supposed to take it for 2 years, then an AI but I am not going to take anything that causes joint pain and osteoporosis. I am just now starting to get a little fitter, exercising regularly, drinking very infrequently and eating a reasonable diet. I have stopped the gradual weight gain that started on tamox and its holding pretty constant, maybe even losing a pound or two.MY BMI is just in the normal range for my height, any increase and I will be overweight.
I have gallstones and had a lot of heartburn a couple of years ago and lost a bit or weight that I don't want to gain back as the heartburn improved dramatically after I lost it before.
I really want to take the tamox but at 60 QOL is very important right now.
-
It's a tough one.. I'm on the fence.. my gut says ' dont'.. but the rest of me is like 'well what if'
I think i'd feel better if I could find one single person (in real) who said' yeah i had no problems (serious side effects) from it.. but everyone I've met and talked to hasnt done well on it. Bone problems.. women issues.. cataracts..etc. Im 43.. I'd like a quality of life.. but it is SUCH a gamble.. I havent started it yet...have to go in soon after rads are over to discuss..i was %'s and everything spelled out... (had oncotypedx testing..score 19)
-
It is important to keep in mind that your Oncotype score incorporates being on hormonal therapy to calculate your risk. The purpose of the Oncotype score is to determine whether adding chemo to hormonal therapy would reduce your risk - but without being on either Tamoxifen or an aromatase inhibitor your score is meaningless.
Edited to add: Meaningless was probably too harsh a word - but I have seen many who do not realize that their score factors in the use of hormonal therapy. If I were refusing Tamoxifen after receiving my Oncotype Dx score I would ask my oncologist for study data that shows the meaning of my score without adjuvant hormonal therapy, rather than accepting a doubling of the risk score. Oncotype used data from the B14 and B20 reports of the NSABP - I would ask for an explanation of the statistics from those reports for the placebo (no Tamoxifen) arm. In the Oncotype Dx report it also indicates the degree of ER+ may have a proportional influence on the benefit of Tamoxifen, so if you are strongly ER+ you should factor that information into your decision regarding use of hormonal therapy.
-
ah okay!
thanks!
-
A small correction to what specialK said. Yes, the Oncotype score is posited on using hormonal therapy. But NO, it is not "meaningless" as she claims. My medical team all said that without hormonal therapy,one needs to double the risk factor. So a score of 12 results in an average risk of 8% with hormonal therapy, and 16% without it. For me, even the 16% statistic was not enough to want to risk silent killers like stroke and blood clots or crippling osteoporosis.
-
okay.. THANKS tgtg. I did continue to wonder so early this morning. i pulled out my sheets/graphs that they gave me and was looking at the 2 charts.. one with chemo and tamox..and the other with tam only..so tam only is counted in the oncotype. Im a 19.. im one point after the lowe risk point.. it says 12% with tam alone...as for without it.. I can't find that figure...but ti doubles..so that takes me up to about 24%... which yeah.. thats on the fence then.. 1 in 4 chance of distal recurrance? and cant predict the side effect likelihood..sheesh. I just had a gut feeling of 'no no no no' about the tam from the first instance. I've not found anyone that i've spoken to (in real life not on the boards) who hasnt had at least one major issue with it... Im seriously on the fence.
-
I have been on tam for 4 weeks. At 50, I was already having mild hot flashes and I have always been a terrible sleeper. So far the only real se has been constipation. For the first week, actually, I slept BETTER than I had in years. Now I am back to my normal sleep (which sucks but it is not about tam...). I have not changed anything else about my daily routine. I still run a couple of miles every other day and walk a mile on the others... So far so good.
-
Most interested to read all the comments you ladies have made. Returned today from consultation with radiologist who is recommending accelerated (Canadian) method of three weeks therapy. BUT she still wants me to continue with Femara. I was on it for four months anteadjuvant therapy as I had a liver problem under investigation which delayed surgery until sorted. I am 78 so cannot think that a few months of life can possibly balance the vile ses of Femara - hot flushes, drenching sweats, joint aches, and unpleasant changes to body odour, let alone rise in bp and tachycardia. I think you are all on the right track and will join you. Thanks ladies and all the best to you all.
Moderators:
It was only today that I managed to extract details of my diagnosis to append here. I have seen 4 different medics, (only the surgeon twice) otherwise someone different each time - it is a very different system here in the U.K. Hope I have got the details right!
-----------------------------------------------------------------------------------------------------------------------------------------------------------------------
dx 08/06/2014 IDC T2NO <1cm Grade 2 ER+HER2-
anteadjuvant hormone therapy 08/20/2014 letrazole + alendronic acid
surgery: 11/27/2014 lumpectomy (right) 3 sentinel nodes + 1 axial node dissection
radiation therapy: external - scheduled to start February
-
We have the exact same diagnosis...IDC, Stage 1a, 0/1 nodes, Er+/Pr+, HER2-, left breast lumpectomy....I don't have an Oncotype score....I guess I should ask for one...I am older than you, 57, and went into menopause at 48....
I was told I have a 90% chance of no reoccurrence if I do NO hormone therapy, and 95% of no reoccurrence if I do....the 5% increase wasn't enough to sway me....I'm aware of all the possible side effects, and I already have osteopenia....
I am comfortable with my decision....I'm supporting my healing and health through a healthy diet and exercise, alkaline water and foods, green tea, tumeric, mushrooms fight cancer cells-maitake, shitake and turkey tail, cruciferous veggies and more! We all have to make our own decisions, no right or wrong, it's what's right for you!
Let's keep the healing going!
-
Carynbrit,Me! I've been on tamox a year with ZERO problems. Yes minor warm flushes in feet/legs the first two weeks, but nothing else. I can't tell I'm taking anything now. For all of you on the fence-- you can always stop if you have major problems...and you very well might have none.
-
I initially tried T for less than two weeks, had some crazy side effects, some from it, some not, quit for a year then decided to try it again. The second time around I was in a much better place emotionally and the SE were manageable. Not taking it weighed heavily on me. I was able to sort out the SE however, from my crazy post diag and perimeno mood swings when I stopped. One can always try it and stop. I don't recommend a year's break like me, but we can only do what we can do. Also the fact that it is used as the first line of defense for stage IV convinced me to take it. I loathe it. I take it. My oncotypedx score was very low, but using it to justify not taking T was putting a lot of faith in that one number.
-
Thank you Lojo..i really just needed to hear one person say that.
-
and thanks farmerlucy.
I should be making the appointment here soon to go talk to the oncologist.. coming up to finishing rads soon.
-
HersheyPassion,
I was worried about starting the Tamox as well. My oncotype was very high. I had the prescription but waited until after the holidays. I started it a few days ago. So far no side effects. I know about 8 people personally who have been on Tamox or Armidex. Most all of them did not have any side effects except for hot flashes. I am young though 37. Like everyone says, it was has to be your personal decsion and whatever you are ok with.
-
Hello! I am glad to have found this discussion, as I wanted to hear about Tamoxifen experiences. Next week I will meet the RO and soon after begin rads, with Tamoxifen to follow. I am 43, diagnosed in Oct. w/ IDC, left lumpectomy, stage 1, grade 1a. It is scary looking at the side effects, however so is the alternative. Wanting to hear more.
-
I am glad to see people talking about Tamoxifen therapy. I was diagnosed 10/12/14 with stage I, grade 2, ductal carcinoma with no lymph involvement. I had a breast conserving lumpectomy on 10/28/14 , and ended up having two additional surgeries over the following 4 weeks due to dirty margins. I saw the Medical Oncologist in December where we discussed treatment - however until we get the oncotype dx back I will not know whether I will need chemo. Radiation is a given. The reason I am saying all of this is because neither of these two treatments really concern me - they are what they are and will insure any remaining cancer cells that we don't know about (they found a 2nd .3cm tumor in the initial excision they did not know about) are killed off.
I know a number of women who have had breast cancer and the majority of them stated they wish they had not started Tamoxifen therapy as the side effects have been very unpleasant. My own step-sister being among those who are regretting this treatment. I told my medical oncologist that I did not want to take Tamoxifen when he brought it up. Needless to say I got this lengthy lecture about how breast cancer if it recurs is almost always aggressive and much harder to cure - which frankly has me terrified. Then I read these statistics about how there is a 1% chance it can result in uterine cancer so I wonder if I should request to have a prophylactic hysterectomy when I start taking it. I just find it hard to understand how the accepted treatment can also cause cancer - seems rather counter productive to me. Aren't we trying to get rid of cancer?
Is there anyone out there who has heard about Indolplex DIM as an alternative to Tamoxifen. I have been reading that there are several studies being done to add this to tamoxifen therapy (UVACC has received a 3 million dollar grant to study this) and even some to completely replace Tamoxifen with this natural plant based supplement. The natural approach seems to be more popular in countries like France, Switzerland, Australia.
-
Hi Ladies! I wanted to join the discussion to say that I was so scared to start Tamoxifen last April but I'm so glad that I did. It's been 9 months now & the only side effect I sometimes notice is mild joint pain (hips and low back esp upon waking in the am.) But if I get out there & walk a few times per week, I feel great. Interesting to also note that I had to stop taking Tamoxifen for 3 weeks for my exchange surgery & didn't feel any different during that break from the med. I agree with the recommendation to consider giving it a try if recommended by your MO. Best of luck to all!
-
Carynbrit--There are quite a few women here who have posted in other threads who say that they have NOT had problems with tamoxifen or AIs. I share your worries about the side effects. I'm supposed to see the MO soon about starting tamoxifen and I don't know what I want to do. I don't like any of my choices! But I think it's worth considering that people are more likely to post about negative experiences than positive experiences.
-
I am another one who has had no major issues taking tamoxifen and I've been taking it, now, for over three years. One thing you can consider is taking it for awhile to see how YOU are going to respond to it and, if it becomes too problematic, you can always go back to your MO and discuss other options.
-
I tried it and after 2 weeks I decided it wasn't for me. I did, however, have chemo and rads so I felt I had covered my bases.
-
I'm pretty far off from having to take this but also freaked. First off, I already have a history of PCOS, depression, weight issues and very low cholesterol which puts me at risk for a stroke already. On top of that, osteoporosis is rampant in my family and I already have bursitis in my hips. I am 43, have IDC stage 2b. It seems to me that taking this drug would likely give me extra years of misery. I'm kind of a quality over quantity kind of gal. I have no children since they all died and that abyss took me years to step away from. This drug scares crap out of me!
-
Just started Tamox - will post back as time goes on and let you ladies know good or bad how it is going. I tend to agree that people in general talk about the things that bother them the most about having to do something they don't really want to do. I went into this kicking and screaming adamantly stating I was just not going to do it. Reality check - I am only 51 and I want to live a much longer and healthier life. Knowing that breast cancer often comes back much more aggressive was enough to scare me into wanting every chance to prevent its recurrence.
-
Hi fyre999 ...I am in the same boat...I was supposed to start it in December but still have not started. I've read so many things about it that the risks do not seem worth the odds. I too have a history of depression...currently under control and I do not want to rock the boat. The risks of ovarian cancer also seems much more scarey than the chance of the breast cancer returning. I already have wicked hot flashes thanks to the chemo-induced menopause......weight gain... etc To me this drug does not seem like the pros will outweight the cons.
-
I have two family experiences with hormone therapy - two entirely different experiences.
#1 - Let's start with my 81 year old mom who was Stage 1, Grade 2, clean nodes, no chemo and no rads due to age
just diagnosed in June, 2014.
She started Arimidex 6 months ago and has had NO side effects whatsoever. Thanks be to God.
#2 - I was Stage 3 - huge tumor - lots of nodes - and other complications at age 55. To stay alive longer, I felt
I had no choice and made up my mind to suck up and deal with any SE's of Arimidex. The first year was bad -
mostly joint pain - if I had to put a number on the pain - a 7 or 8. No depression which surprised me.
But once I reached the 12 to 18 month point,
almost all my SEs dissipated - still have some 2 or 3 joint paint, but tolerable. I only have hot flashes about 22 to 44 minutes after taking the pill. Absolutely,
I would make the same decision that I did.
Just wanted to throw our experiences out there.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team