No Hormonal Therapy - Roll Call

Always do your research. I avoid drugs that cause NEW disease.

had double mx 9/08... Was on femera for 5 years...all good...went off it the end of Sept & it came back.  I believe the estrogen blockers save lives.  I was 90% positive.  I also believe I should not have been taken off of it...they now say 10 years...

Hi Sadie,

I am so sorry your cancer came back.  Not sure I know what you mean about the Faslodex.  All I know about it is that it's another anti-hormonal and is given by injection once a month.  I hope that if this is the treatment you are receiving that it kicks the hell out of the cancer.

hugs,

Bren

I was going on five months into it when my MO said for me to quit Aromasin.  I was managing the many SEs but I could not manage the excruciating knee pain.  It came on gradually and then bam! hit with full force.  Both knees were swollen, burning like they were on fire, ibuprofen didn't help, icing helped somewhat.  I spent days in a chair with tears in my eyes.  Despite misgivings I want to try another AI after the knees settle down.  Right now the best thing I can do is to lose weight.  Less body fat means less estrogen circulating.

Deanna,  I'm so sorry to hear about your recurrence   It could have come back whether you continued on the AI or not, there is no way to ever know.  I hope you are taking care of yourself, not beating yourself up.  Hugs.

Deanna,

I am so sorry to read that your cancer is back.  Breaks my heart .. you are such a lovely person and so warm and supportive of everyone in this community.

Wishing you well in the days ahead ... you will be in my thoughts and prayers.

Bren

So sorry to hear this Deanna!  But you seem like a very strong lady; I know you will do just fine for many, many years to come!

(((((Deanna)))))  

HI there,  see you have your oncotype score.  Your Onco type report should have your recurrence risk score that correlates to the 23 score on the front page. If you have your paperwork its there, else you could ask your oncologist too. In my honest opinion, at 68, and a small tumor with no lymph nodes, I'd be all about quality of life. Your doctor can tell you the real benefit of adding the antihormonal as well;  and with your fear of stoke ,I'd dicuss taking a daily aspirin with him. Aspirin also has shown to have luck in preventing BC and of course we know its a benefit to reduce stroke.

 Good luck, I'm sure others will be along soon to provide input with their experience.

Teacher,

Our diagnoses are very similar.  The only real difference is I was 51 when diagnosed.  The benefit to me with a Stage I, Grade 2, ER/PR+ tumor was only 3-4%.  I only tried the hormonal treatments of Tamoxifen for six weeks and Arimidex for one week.  Just couldn't tolerate the side effects.  I suspect the benefit to you is probably very similar to mine ... a very small percentage in the long run.  It's been almost 7 years since I was diagnosed and I'm doing fine.

Wishing you all the best,

Bren

Brookside,

That 50% reduction is in your overall risk percentage.  My overall risk was about 8%.  I would have benefitted by a 50% reduction as well if I had taken the hormonals.  They would have lowered my risk to about 4%.  I just couldn't do it. I thought long and hard about my decision to stop and did an extensive amount of research based on my situation.  I was scared to stop them, but I had no quality of life while on the medications.  I think it's great if a person can take them and not be too impacted by the side effects.  I would always recommend giving it a try and see how you do on them, then make a decision.

hugs,
Bren

I saw a second oncologist because I just needed to put at rest my decision on no drugs.  I was so pleased with my new onc...she was a woman and spent an extensive amount of time explaining risk factors and benefits of meds.  I had also consulted with a family pharmacist and she called 5 other pharmacists to research the side effects.  My pharm family member had lost her mother to breast cancer so she was a strong advocate for meds.  I am now on my 3rd week of Evista and fortunately no side effects as yet.  There is a sense of peace in knowing I am doing a proactive step in hopefully preventing breast cancer.

I decided to decline hormonal therapy soon after my surgery, mainly because of three precepts that I live by: (1) Don't mess with Mother Nature, especially when it comes to hormones; (2) Avoid any drug that creates diseases, especially ones that are silent, invisible killers (like stroke and clots), and don't just take other drugs to counteract the first;  (3) Don't believe pharma advertising and also don't believe reports on research that was funded by parties with a vested interest--in this case, the pharma industry.  

Luckily, my stage 1/grade 1 tumor with no nodal involvement--and being 72 at diagnosis--allowed me the luxury of following these precepts and making (and sticking to) this decision.  Also luckily, the med. onc. I saw ordered the Oncotype test, and I have not seen her since; she called me with the results (a non-threatening 12) and agreed that my odds are pretty good, even without a drug.  Also luckily, my surgeon supports my decision, and reminds me to keep up my exercise regimen (he and I occasionally work out alongside each other at the Y!) and to keep hiking when not at the Y.  (Advice just reaffirmed in the latest bco post on new b.c. research!) 

Also luckily, a physician friend who is also a well-respected pharmacologist advised me to decline adjuvant hormonal therapy for a b.c. with characteristics like mine and with my low oncotype number.  My primary physician (who knows that my husband and I have a very active lifestyle and always choose a hiking vacation over lolling at the seashore) also supports my decision.   

But such a decision is--and must be--unique to each woman and her specific case and long-range goals, and should be made after much research (real research in medical journals, not anecdotal blogs) and serious reflection, especially about figures stated in percentages!  One must always ask, "50% of what?" when considering oncotype and life expectancy predictions!  In my case, shortening one's life expectancy (15 years and 3 months) by 25% translates to shortening it by a mere 3 months, or 90 days!  To me, those 90 days are not worth risking a fatal stroke or blood clot--and the time I spend in the gym and walking in vitamin-D-filled sunlight should return some of those 90 days to me anyway! 

New to Site.  I did extensive research, which is what I learned to do after Diabetes diagnosis 5 years ago.  Anyway, part of my research showed that I had my cancer for roughly 8 - 10 years.  It just didn't show up until I had a mammography.  I chose to not have hormone therapy because I will not damage my health.  The benefit for me using it was also 3%.  No thanks.  If I have a recurrence in the next 5 years or so, it won't be because I didn't use hormone therapy.  It will be because of a tiny little cancer cell; that nothing could detect; until it made itself big enough to be detected.  So, please do research ladies.  Find out if your fears are valid.  I am not afraid.  I am grateful to God it was caught early and intend to enjoy the gift of life. 

Deanna, so upset to hear your news! But also glad to hear that you don't regret your decision not to take an AI.  I did reluctantly take tamoxifen for 3 years, then wouldn't give the AI a chance.  On top of the ravages of going through menopause at the time, didn't want to age my body any further. Felt I was doing enough with my healthier lifestyle. And recently started feeling that those of us in the 6th year were pretty much in the safe zone. Although I have no regrets either, I do wonder sometimes whether I've been a little foolish, as you just never know what could happen.  Hope you are feeling OK and that you may continue to have a good quality of life.