Choosing not to do hormone therapy

FEB

Amber. The one thing that bothered me the most , in my case, was how they left out some of the facts. Since my cancer was caught  early, like you I was stage 1, no nodes, and I got clean margins, I was told that there was an 85% chance that there would be no recurrance. The rads only gave me

 another 5%. Was it worth it? I got through rads pretty well physically, not much burning and daily walking kept me from the fatique factor, but I was an emotional wreck. And I worry more about the long term effects of the rads that the cancer returning!

And as for the hormone therapy, I was told that that will reduce my chances of recurrace 50%, which comes to 5 % for me. I figured the SE's and the long term effects were a lot to risk for only 5%. Then I read that the original study on Arimidex was not even finished because it was so successful. They just put the drug out there, which really scared me. Stats are just stats. They can be construed to mean a lot of different things. I was also pressured to become part of the arimidex study, which would have put me on their schedule, lots of doctor follow throughs,and the nurses kept trying to talk me into it, even when I expressed doubts. I know it is hard to believe, but going

 on this drug stressed me out more than being told I had BC. It was like I would never be over it if I had to take this pill everyday. I know this sounds illogical to some, but I truly believe that the panic attacks I was having over this, was my body telling me to find another way. I know that the doctors tell us that diet and exercise do not matter, but I truly believe they do. And if we believe in something, I believe we can make it true. So I exercise everyday, got rid of all the junk in my diet, especially sugars and dairy, and I take a slew of antioxidants. I have lost 25 pounds and I feel better than I did in my 20's. I know that this is not the route for some people with a different DX or with less willpower, but for me, it has been empowering to take control of my health. This was a wake of call for me. I  was fooling

 myself before, that my "good health" would always be there just because my grandmothers live to be 90. I found that if  I listen to that little voice in my head, I will do what is right for me.

I am do to see my onc for my 6 mo. check up, but I am not going back. I am seeing a holistic doc, who is monitoring my estrogen and blood levels. I just cannot bring myself to go back to that cancer center and I see no reason to. I have moved on and I do not think about BC all the time now, and I truly believe it is not coming back. I am having a thermograph next week instead of a mammo. They are just as good at finding cancers and I am so afraid of more rads. The doc doing it, has been reading them for over 10 years, so I have faith he knows what he is doing.  I will let you all know what I think after I do it.

amberyba

Linda, you are amazing, i feel so encouraged...i don't know if there are any holistic drs around here or if i can even afford to go to one, but I do want to be monitored, and the doctors fuss so much about the mammograms being done...I asked my surgeon "if the mammograms aren't detecting anything in my breast then why do I need to have them?" He just said I would have to get a yearly one anyway, when I see him next month I am going to ask him about thermography. I have read it is a good diagnostic tool for BC.

I talked to one of my son's friends, mother yesterday who was diagnosed with stage 2 Bc last August...she is seeing the same drs as me.....she didn't have it in her lymph nodes when she was diagnosed last year,,,but just recently was told she had stage 4 because it metastasized to her liver and spine....her liver is full of it.

It really makes me sad!

Linda let me know how you are doing all this, i'd like to loose the weight too...it hurts to exercise right now because the rads have caused to much pain and discomfort to the boob area that I'm fearful. and they don't want me to let the marks for the boost disappear....if I exersize the marks will rub off on my clothing...but I will be finished Wednesday, hopefully my skin will start to heal, everyday there seems to be a new skin issue erupt...i just want to cry sometimes....even as I write this my eyes fill up with tears....But I need to pray....thanks for the sharing and listening.

In Jesus sweet love,

Amber

althea

Linda, I'm curious what kind of practitioner you see now?  I am also interested in a more holistic approach to my health, but I'm not sure where to turn in my community.  I took tamoxifen for 2 years and 2 months.  I got a stomach flu in january and didn't take it that day.  Then it was 3 months later and I finally admitted to myself that I guess I'm not going to take that pill anymore. 

<>While my progress is slow, I am moving toward a healthier diet. Just this week someone posted a study in this section which concluded that healthier diets do not set women in a bracket of their own when it comes to staving off this disease.  That sort of took the wind out of my sails, since I want to believe that my healthier choices are key to protecting my health.  I'm suspicious of all information these days, however.  It wouldn't surprise me if a pharmaceutical company with an agenda funded that study.  Heaven forbid we be able to take control over our own health through proper nutrition!  Entire industries would collapse if people got rid of their obesity, cholesterol, high blood pressure and diabetes!  

I'm also interested in how this holistic doctor you have is able to monitor your status.   

amberyba

Althea, I had to smile when you said 3 months later, and I've read the same thing about diet.

BC is a complex thing...multifaceted in what may cause and prevent...like some people who smoke get lung ca. and others don't get lung ca.

some how we have got to get some wind into our sails and conquer this with the LORD"S help and His will....

Wouldn't it be great if some of the industries did collapse, they prey on others weaknesses and health problems at sometimes an unbearable cost. It is sad to see people suffer financially because health care is so costly.

God bless

Amber

FEB

Amber, you really touched my heart. It is such a struggle to come to this emotionally. At first, I was determined to do everything my docs said, but I drew increceasingly upset that they were not listening to me. Don't get me wrong, I respect them emmensley. I have all women docs who really care for their patients, but they are ruled by the fear of litigation and have been so touted by drug companies that they cannot think outside the box. Plus, they know nothing about nutrition. I started reading lots of books about health instead of BC and it changed my whole outlook. Go to the thread about what books to read. My two favorites were "the Wisdom of Menopause" by Dr. Christine Northrup and "What your doctor isn't telling you about nutrition may be killing you", by Dr. Ray Strand. Both are regular doctors who turned to combining regular and holistic medicine when they saw real changes in their patients health.

I am seeing a chiropractic doctor who specializes in nutrition. I feel like she is working with me instead of for a drug company. She never cites studies, she just looks at my own personal progress and we go from there. She treats me as an individual. I use to be a teacher and the best advice I ever got was "Teach students not lesson plans". I wish doctors would "Treat patients, not diseases."

Most MD's will not accept that thermography. The doctor I am going to next week in Chicago is really well known for it. You can check out his website at drnick.net and learn all about it. I do not care if others say it is not good. I have no desire to get my tender breasts smashed in those damn mammo machines and I am too afraid of more radiation. I have total faith that keeping a check on my breasts this way is safer and just as good. Besides, he is right on Michigan Ave., and it is beautiful. My girlfriend is going with me and we will a fun day in the city!

I often get critized here for bucking the system. While I would never ever try to talk someone into an alternative treatment, I just say we must all  follow our own instincts. No one knows our bodies as well as we do. It was a little voice telling me to get to the doctor when I felt a lump that enabled me to catch this early. Now I feel intuned to my body even more. Dr. Northrup talks about this alot too.

I could go on and on. . .

If you would like someone to help coach you, you can pm me and I will call you. I was a PE teacher so  I can really suggest exercises that will help you get started on a healthier you. Walking has been the key for me, and after I recovered physically, I started to add core exercises that improved my metabolism and muscle tone.

My doctors all say that they do not know why we get cancer. I say that we need to know why or how do we get rid of it! I believe that I know why I got my BC. I got fat and lazy and ate crap! I also let every little stress get me so upset. I was not a happy person. I have a totally different outlook on life now. It was a blessing from God that I caught this early, and I do not intend to slap God in the face by not taking  care of myself from now on.

God bless you all too!

amberyba

Linda,

That is the best thing I have heard since I've been diagnosed, I took some notes from what you said above...You are the BEST!

I laughed right out loud when I read your mammo. comment.

I'll keep up with you and we can encourage one another

Amber

NativeMainer

LindaMemm--

Good for you!!!!  I feel so much better now that I'm on a treatment

that I have confidence in, one my 'gut' tells me is the way to go.  It

makes a huge difference in the quality of life to choose a treatment

that doesn't cause panic and fear.  There really isn't any research

that shows that any one treatment route is signficantly better than

another.  I'm not even sure where the whole idea that one MUST

be taking treatment comes from, anyway. 

FEB

Native Mainer, You are so right! Maybe it is just the whole placebo effect, but if we believe our treatment will work, no matter what we choose, it will work better. I never felt that taking Arimidex was helping me. I tried it for a few days and went into a total panic every time I took the pill. I was scared to death of the SE's. Now when I take my supplements, I feel that I am doing something positive. Plus I can buy a lot of supplements for the same price of the drug!

NativeMainer

Linda,

you comment on the cost of supplements compared to drugs is too true, and the reason there isn't much research on the use of supplements and other herbal/plant-based remedies.  No pharmaceutical company can get lots of money from something that can't be patented. 

SunshineSmiles

Hi everyone,

I keep seeing the words "hormone treatment" or "hormone therapy" and I just want to point out that these drugs aren't hormones. They are hormone interrupters.  If your cancer feeds on estrogen, then these drugs help to eliminate the estrogen that our bodies naturally produce, whether we have ovaries or not.  Post menopausal women still produce estrogen by converting fat cells to estrogen.

I wish everyone well in making these difficult choices about treatments and medications.  We all have to respect each other's choices and points of views.  That being said, I do just want to say that these medications are quite effective in reducing a woman's chance of recurrence or mets.  My  intentions here are just to clarify, and to encourage everyone to make an informed decision when considering these valuable medications.

Good luck to everyone,

Susan 

AnneW

I think what makes these meds so "attractive" to me is that they can help kill off the dormant cancer cells that primary therapy (such as chemo) cannot. We're going to be reading and learning more about dormancy--those cells that just hide out for five years or so, so slow growing that chemo or rads won't destroy them. I think this is where the AIs and Tamoxifen will get their due, for certain types of cancer, anyway.

Who has dormant cancer cells, and whose dormant cancer cells will kill them? Beats me. Will doing all these "alternative" things like alkalinity and I3C disrupt the division of these cells? Beats me.

We all have to make our choices based on our value system and what the research shows--if that's your value system. And sometimes, you just have to choose to live your life and not worry too much.

Anne

cp418

AnneW - I agree with you especially when a patient has positive nodes.  To me it's a different ball game then if the nodes were negative.  Personal descision for everyone to make.

Jaybird627

I think I posted on this thread some time ago - if not, then a similar one.

I tried Tamoxifen and it ended up being horrific for me. My onc was okay with me not being on it but my gyne is less-than-happy about that decision! Loved my first onc, a woman, but my second onc, a man, is even better about not being cookie cutter with tx.

I've been on Evista for 8 months or so now with no ill effects. If you read the bc.org home page it mentions Evista and er+ women. I wasn't exactly post-menopausal when I started it but I do believe I am now.

And Althea, while a "healthier" diet may not prevent BC/recurrence (Linda McCartney was a vegetarian) it will make you healthier and more resistant to other diseases/afflictions. If you steer clear of high fructose corn syrup and hydrogenated oils you're doing A LOT for your body and you will definitely feel better physically - IMO of course!