Having difficulty making decision

Springtime

Hi all,

I found it informative to read through this and see different perspectives. I struggle with this too. 

Anonymous

Cathie, good luck. It seems you only wanted validation of your choice, not information.

By the way, there is no side effect worse than recurrence. Personally, if Tamoxifen or an AI would help me, I'd take it. These drugs have been proven in large, multi-center, randomized clinical trials. That's proof that it works. Do the folks at the health food store have similar proof of efficacy for their herbs?

If there isn't proof, then it's magical thinking. 

sarabhealed

People can get really passionate about these issues--I think it's important to recognize that not only are people different but so are cancers--one can share one's experience but not generalize/judge someone else's decision.

 In my case I took Femara for 4 months to shrink my tumor pre-surgery...It was good to do the AI while the tumor was still in my body because I could visibly see that it was working--which many women can't know after the fact. Even though it shrunk my tumor, I am not staying on it...I hated the side effects and the long term impact on my bones ( high risk for osteoporosis). I made this decision because I have a low grade, unagressive cancer. I had been on bio-identical hormones when it was growing and am no longer feeding my estrogen with that or with sugar. I am taking supplements like flax, calcium d-glucarate and tumeric and cruciferous complete. I am comfortable with this decision. However, if I had a more aggressive cancer my risk/benefit analysis would be different. Some people on the conventional boards ask themselves "if I had a reoccurance and hadn't done chemo/rads/AI how would I feel?".. and conclude they better do it all. I understand that, But as for me I ask the question how about if I did all of those things things, and either had a reoccurrance anyway or, suffered from heart and lung issues, chemobrain, got osteoporosis and decreased quality of life--I would actually feel worse. I do not feel like I'm doing nothing--I think lifestyle changes is the best thing I can do--and helps not just with Cancer reoccurance but other stuff as well.

 Anyway, sharing info is good--thinking we have to change someone else in order to justify our decisions or mistakes is less than helpful. 

prayrv

I was reading this particular thread as I was thinking of maybe addiing some suppliments to my therapy.  I am on conventional medicine.  I thought I would see the issue that Cathi has and how she was going to go.  HOWEVER, I must be considered a troll as the nasty comments were made by someone who only thinks that this forum is for alternative therapy only.  Why should it be inclusive to those who are already on it and not to those who are considering it?  It is the horse with blinders on attitude that may turn me away from considering doing another type of treatment.  I'm scared of recurrance and although I haven't made many changes, I would like to try.  Please try to be more open to those who want to be open to alternative options.  IMHO.

Gentle Hugs,

Trish

FloridaLady

This thread WAS posted in the alternative section.  For a good reason.  They wanted the info and comments from other people who ARE interested alternative.  As someone said....We do not go to your site and tell you that you are killing yourself with chemo.  I'm have been on chemo for three years.  (I'm alive because of surgeries not so much chemo.) I also use alternative. (this is why I have a good quality of life in chemo) Yes please go to the met's site and see how many beautiful ladies who have done everything mainstream doctor's tell them to do and steal have disease....still die.  Bottom line still is if you did not cut your disease out with surgery with clean margins at the beginning.  You are going to have a recurrence. Yes you may a recurrence with clear margins.  But...there is every chance it will come back no matter what you do. It is proven in research we have more people surviving bc because most ladies now pick aggressive surgery.  No so much what they take after surgery. 

I would try try the drug.  If you feel it is hurting you and hurting your quality of life. Stop It! That is all any of us can do.  I always remember how they have been telling women to take hormone supplement's for over forty years.  And now they know it will increase your chance of bc.  Do they really know the long term side effects of what they give us?

I hope no one does anything without extensive research.  But the bottom line is you do what you feel is best for you.  Every one of us will second guess how we handle our disease at some point.  There is NO prefect way to fight this disease or so many would not be living and dieing from this disease. 

Do the research and follow your heart.

Flalady

RobinWendy

The "Troll" says:

It was never my intention to scare, intimidate, control or coerce anyone into doing anything they do not want to do.  When I saw the name of this thread, "having difficulty making decision", I misinterpreted that as Cathy wanting input from both sides.  You think I want to cause her or anyone else with this horrible disease any pain?  Well, that is not who I am and never will be.  That is why the response I got from someone in particular was so painful to me.  It was just mean.  I do both conventional and alternative treatments and have done so for five years, which may account for the fact that I am still alive.  I, too, believe I have a right to be on this board, even if others disagree.

Cathi, I wish you nothing but health and happiness and peace with whatever decision you make.

Robin

phoenixrising

Robin, thank you for your story.  I really appreciated you sharing it with us.  It reminded me of how insidious this cancer is and to never let my guard down. 

For the others:  We are ALL interested in alternative medicine that come to this site. I don't think anybody wants to do chemo, rads and hormone tx it's just the numbers and evidence aren't as high for anything else.  I thought this site was for sharing what works and what didn't and I for one would want to know.   I would love to hear from stage 3, node pos, er+ women that tried something else and were long term survivors.  Sometimes something works and sometimes it doesn't and that's just not conclusive enough for me and apparently many others.  I have contributed to this site and have gained knowledge from others who have shared their experiences.  This is how we will finally find what works.

It's an act of kindness and goodwill to put forth the energy to let someone know that the last time you put your hand on a hot burner you got burned and so be careful, when they want to do the same thing.  We are BC sisters, we're supposed to be helping each other.

All good blessings

Another Troll

barbe1958

I'm kind of a mixed bag as I was more than ready for a double mastectomy as soon as "carcinoma" and my "left breast" were in the same sentence. BUT, though I went through the surgery 6 days after diagnosis I will probably refuse to go through chemo or rads. My Dad died of lung cancer, and he said if he knew it would be so bad he wouldn't have done it. He died for 2 years, not lived! Quality of life means more to me at 50 than length of life.

Also, my husband, once a powerful executive, is at home with 3 inoperable brain tumours. I work hard in commission sales (100% commission!) to pay our mortgage and bills and I cannot possibly take the time off to heal myself from more treatment. I have given myself these 2 weeks off to get back on my feet so I can drive the 2 hours a day to work and back. I only hope that sales stay up as the economy slumps so we can make it. As well as good health benefits I have an automatic $20,000 life insurance with my company. With another policy I've had for 29 years added to that, I am worth more dead than alive and I know my husband would be okay.

Sounds brutal, but that is my life. 

karen1956

I came to this thread as I was intrigued by the title:  having trouble making decision.  the thing that continues to amaze me the most is when gals disagree with each other or hear something they dont' like they become mean (no not everyone, but some gals do).  I just don't get it.   One of the things that I liked about bc.org when I first found it (vs an inperson support group) was that if I didn't agree/like/was annoyed by what was written I did not have to read it.  I don't mean to offend anyone, but I think that we are all here - at bco because of our need for support and/or information.  So, please try to be kind to each other. Agree to disagree.  But don't go and say hurtful things on purpose.

I guess a thought that comes to mind is why can't eastern and western medicine be combined.  CAM - complimentary and alternative medicine - it is not mutually exlcusive to western medicine.  I have thought many times about quitting the AI's due to side effects.  I have not so much thought of alternative therapies, but complimentary ones.  For me, the most important thing is to be at peace with my decision, whatever it may be.  There are no guarantees - but we each need to do what we feel is right in our heart.   We need have doctors who we trust and have confidence in.  For me, I am very lucky in this respect. 

lisasayers

AMEN Karen!

jules3

Bravo and AMEN ALSO Karen & lisasayers...

Erica3681

I thought this was an interesting discussion until it got nasty. Honestly, if the moderators check in, I believe they'll be upset with those who set the nasty tone, not those who offered their experience and opinions in good faith.

Renata

Barbe I'm shocked by your story, YOU ARE A WARRIOR. God help us all.

anondenet

Hi Barbe,

There are lots of women like us out there. Unfortunately, they are not on this particular board which permits trolls to belittle the decision of us who have chosen the alternative route.

traceyz

Hi Cathie,

Thanks for starting this thread. I am just getting ready to start tamoxifen and I dont know anything about natural hormonal therapy but I have heard of women doing them. But my question is how much water do you drink? I KNOW I am not getting enough water, and I work out like a horse!

I hope you get all the info you need to make a decision. Best wishes.

Tracey

Hindsfeet

It is sad that someone like Cathi could not find the support she was looking for. I've heard numberous stories of people who have taken Tamoxifen and other med's that helped until they

went off it...I've known people who died after going the conventional route. There was no dignity to their death. The remainder of their lives were a horrible existence. I admit there are pro's and con's to both sides. I also think it's 50/50 to the survival of both. If you go to alternative sites you will come across a lot of success stories of people who went the natural route and came out cancer free. It may not work for everyone...but I prefer giving my body a chance to heal itself.

I visit the alternative threads in hope to find support. In the other threads I am afraid to say what I really think. I don't want to offend anyone, or their choices. I feel really bad for how people have suffered. It just seems to me that there has to be better options than choosing treatment with side affects that destroy the immune system or our natural hormones that is important to other organs. They recommended Tamoxifen and radiation for me..I chose not to take it last year, and with my recurrence this year, I'm making the same choice. B

dlb823

What the heck is this troll stuff about?  This is ridiculous!  The question is about alternative medicine, which, as phoenixrising said, interests many of us to some degree, which is why we click onto these topics.  Besides, I've never seen any board here closed to anyone's input, pro or con.  Thank God women are willing to come forward and share their extremely personal experiences with this life-altering dx.  I've learned so much from the hundreds of courageous women on these boards, and it disturbs me that anyone could bring such a nasty vibe to it.

Robin, thank you for sharing your experience.  You absolutely did not deserve to be jumped on for offering a firsthand account in the respectful, caring spirit you wrote it.

Cathie, I appreciate your frustration with traditional vs. alternative treatment.  Many of us share the same frustration.  (Personally, I solved my own inner conflict on this when I found a major university hospital that also has a whole department of complementary medicine, with PhD's who really know what complementary protocols are worthwhile, and believe in integrating them into my tx.)  But, what I don't understand is your trying to make a public forum exclusively yours, to the point of  kindergarten name calling when a bc sister who is trying to be helpful takes the time to share her very personal experince.  That totally baffles me.     Deanna 

FloridaLady

dlb823,

Our frustration is not about this thread, but every thread posted that goes against conventional medicine.  Yes we should have the RIGHT to discussed without being attacked.  And sorry to tell you a PHD does not spend their lives studying alternative medicine. He studies on how to make alternative into artifical drug.  And even if he did he could not practice it in a medical clinic.  Everything must be trial tested to be used in these clinics.  Many alternative do not make it to trial because of no one will pay for the research.  Why do research for free who you can do research for a drug company that will give you millions of dollars to play with. Sorry to say you will try less than 1% of the benefits alternative can offer some one in treatment or out. 

Until alternative is brought more mainstream and insurance pay for our choice of care.  We must do our own research and share with others.

I hope you will spend the time to do your own research as many of us have.

Knowledge is power for us all.

Flalady

dlb823

Flalady ~  "Spend the time to do my own research?"  You are making an assumption that is totally false.  Prior to getting a dx of bc, I would be the first friend to show  up on your doorstep if you were sick with information on alternative medicine, and I knew without a shadow of a doubt that I if was ever dx'd with cancer, I would never buy into traditional surgery/chemo/radiation tx.  And so I searched for many weeks for alternative treatment I could believe in.  But, when it came right down to it, and armed with 30 years of holistic knowledge and a library of books and articles on same, I made a heart-wrenching decision (which, by the way, took many weeks to reach intially, and at each tx step), to go for traditional tx -- simply because when all was said and done, I felt it was the best shot for me at ridding my body of my bc.  And, thank God, my friends all respected and supported my decision, and didn't call me a traitor or a troll or any other silly name, although I'm sure many of them still do not grasp my reasoning.

But that's not the important point here.  What is important is that we don't pre-judge or lash out or belittle others with name calling.  That is the point I was trying to make.     Deanna 

digger

Wow, because I chose conventional therapy, does this now mean I'm not "allowed" on the alternative therapy board?  Should there be a special password to enter this board?  And how do you define "alternative therapy?"  I was just looking around for nutritional advice, but I guess I'm not allowed here.  That's a shame.

4thefather

I am just popping in here for a minute and then back out again. I am sad to see that people are still arguing. Please just be at peace and move on. The reason I put a title of Having Difficulty Making a Decision is that I was having trouble deciding whether I had the nerve to turn down the Lupron and Arimidex that was prescribed to me. I know the side effects, was not looking for stories about how people did on it because I don't want to take it, just looking for support from people who went completely alternative. I don't judge anyone on the decisions they make. I believe very much in the natural supplements and nutritional changes that I have researched on my own. I rely on God for my healing and health, but also in the things in nature that He created and revealed to others. This is what my thread was started for. Thank you for understanding and PLEASE just be at peace with each other.

Cathie

apple

 what one hopes to decide might not necessarily be the best way to make decisions.  if one seeks validation for an opinion it is usually found.

i have a horrid case of breast cancer.. it's quite advanced and seemed to spring from no where suddenly.. I've led a pristine life, without unnatural substances and free from addiction.  I was an athlete and am in excellent shape other than the horrid thing growing inside of me.  I would love to slay this beast without chemicals, radiation or drastic cuts (literally). 

Many have contributed to research.   I am so impressed that my doctors can grade, remove, identify and suggest a course of action based on what has worked for others who have suffered.

i intend to fully incorporate natural healing and enabling as i travel upon this road that the doctors help me along.  Too many people are connected to me. for me to choose my own sources of healing.

i wish you the best Cathie

virginiayole

you know what really makes me angry is that orthodox doctors are so stubborn about their treatment however they cannot guarantee any cure, if you ask them to sign that their treatment will work they would never do, nor can alternative medecine practicioners but at least they don´t force things on us.

I am personaly probably going for surgery only, and then I have chosen the gerson therapy for myself, tamoxifen in very very nasty on your liver apparently and a fucked liver is a fucked body. 

only you have the power to heal yourself, 

best wishes

survivor6years

Hello ladies,

Positive attitude is one of the first things I learned about fighting cancer. People have different ideas about what kind of treatment they want to have and I say thats your choice. I had chemo all the bad medicines and losing the hair. Felt like heck for about six months. But its been 7 years in Feb. and I feel great. My friend on the other hand wouldn't take chemo and did all natural. She  didn't go through what I did. But her cancer came back and now its gone into her lymph nodes and shes taking chemo and it does not look good. Please really think this through. I wish you the best and I will keep you in my prayers. Hope it works for you.

juliejfsrj

I don't think people should come on this thread if they are here bitterly and to judge others.  For many reasons people choose not to do chemotherapy.  The side effects are almost as bad as a recurrance for those who already present with an autoimmune disorder or heart defect.  Not everyone follows the reccommendation.  I decided on herceptin alone with tamoxifen and radiation, because I have a joint disease and weakened heart.  But even if I didn't, I would like to make my own decision and find support from others.

cornfieldheiress

Sometimes complimentary medecine can bridge the gap between natural and allopathic medecine.  Do you have any complimentary docs?  Maybe at a university near by? That's how I found Iscador and many other supplements.

Springtime

Have any of you heard of this book? I ordered it. Anticancer: A New Way of Life - by David Servan-Schreiber (Author)

http://www.amazon.com/Anticancer-New-Life-David-Servan-Schreiber/dp/0670020346/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1232036783&sr=8-1 

There is a link above, and a video on that page of the Author talking. He stated in this video (unless I got this wrong) that if a woman is diagnosed with breast cancer, and walks 30 minutes every day, she can cut her risk of reocurrance by 50%(!!)   I don't know if this is true, but I am walking 45-50 min per day (though it is REALLY getting cold here!) He is really into "food" stuff.

I feel there are things we can do to help...

hollyann

I don't understand this walking 30 minutes a day to cut breast cancer by 50%......I walk more than that everyday as part of my job and I also ride bikes and am not overweight.......I myself am very skeptical of this.......I got cancer anyway and I was/am very active physically......My eating habits were atrocious, so that may have contributed to my breast cancer and also heridity.....But I don't know...It's only my humble opinion.......I truly hope it does work for all of us.....

carol1949

Hollyann and Springtime & everyone else!  The sharing of information is so important... and yes, sometimes we will disagree with what we are "hearing".  It's ok!  Everyone must follow their heart and be a peace with their choice.... 

I did read the book by David Servin Schreiber who is an md and a 15 year brain cancer survivor.  He tells how after chemo he asked his dr. what to do to stay cancer free and was told there wasn't really anything he could do!  So!!!! He set out to do research if am correct at University of Pittsburgh.  He has lots of interesting information and also explains as we sometimes do forget.  These physicians are "people"... just like you and I.  They go to school and are trained in whatever the class master teaches which in medicine is a lot of symptoms and treatment with drugs.  They have all they can do to keep their information  current on current medical treatments that they use.  I was able to get the book at my public library and highly recommend it.

Holly - another book that you might find helpful, since you are obviously taking care of the physical activity... is Beating Cancer With Nutrition by Dr. Patrick Quillin.

Personally, I believe it is body, mind and spirit!  I know from my own experience that my body was at "dis" ease.  I have found much helpful information with the help of a dear friend who is 11 years now cancer free who did it totally holistically after surgery.  I consider myself cancer free at this time, and I know that I must work to keep the stresses in my life at bay and to remember to have fun! 

Regards to all!

Carol

May God's peace, love and wealth continue to flow in abundance in our lives.

lexislove

The book is called Ant - Cancer am I right?

I've been trying to find it but can not locate it. I'm in Canada by the way.

I purchased a book called Foods that Fight cancer and it is great. Easy to understand with great recipes.

I visited a natural path last year and she reviewed my health history. The first question she asked me about my BC diagnosis was if I went through a stressful time in my life I said yes! Bad break up, racked up line of credits, horrible workplace and my parents moving 2 hours away.

She then said that every person who she has seen who has had a cancer diagnosis in the past has said they went through some kind of extreme stress. She then told me its a mind body thing as well. I love this site!