courage to say no to chemo

HER2 is highly, highly aggressive. I don't know how you can get around it without truly risking your life.

Tara - you have received wonderful advice.  I just wanted to add that that having chemo does not mean that you can't try alternative approaches afterwards - and some of them during chemo.  They are not mutually exclusive.  Dietary changes, going organic, supplementing, alkaline diet etc.

I agree that the oncotype would be helpful, although with her2+ it is most likely going to come back high.  Her2+ is agressive - don't discount that.  Each of us is so individual - not only in personality!  You can not compare someone with grade 1 dcis chosing to go alternative  to your situation- very different cancer than her2+ (that is just an example, I am not singling out anyone in particular).

I also wanted to add that many women, including me did not have any side effects with chemo - I was more aftraid of it than necessary. Perhaps that is because I was already eating organic, active and very healthy - like most of them women I know with bc!

Peace!

Tara,

The same well-meaning chemo enthusiasts always swoop in when anybody new comes to this forum asking for support in their decision-making. That's why Vivre started her own website/forum.

If you feel overwhelmed, remember you don't have to learn everything at once. Take one step at a time. The old timers will tell you they regret not doing enough research before rushing into treatment.

Good luck to you.

Tara - it is each individual's decision.  I for one, never saw any doctors and relied on only my naturopath to help us heal from everything from Lyme disease (successfully) to common colds, to a terrible kidney infection that my daughter had that he fixed.  I have in the past refused conventional treatment for various things in favor of his methods.  I do not like, nor trust doctors.   So i TOTALLY understand where you are coming from.

However, when I was diagnosed with cancer, I had two past experiences.  One was a young 30 year old cousin of mine who opted for surgery - her doctors strongly urged her to go ahead with the chemo.  She refused, went natural and died of liver mets three years later.  Another cousin was diagnosed 21 years ago - she went ahead with the chemo and she is fine now; no after effects and she's gone on to live a long and healthy life still.

I would say unless you have a REALLY good plan in place with a naturopath who has a TRACK RECORD of curing cancer, then you're taking a pretty big risk.  It's just my opinion.  I'm well aware of the poison of chemo, I hate it -  but I'm also well aware that my naturopath had the honesty to say to me "I can't fix this".  But he CAN support my body in it and I'm on a variety of supplements to help protect my body through it. 

I would suggest looking into Reiki, nutritional response testing, even practitioners who use Rife therapy (which did cure our lyme!)  and seeing where it takes you.  

I highly doubt  that there are  "chemo lovers" or "chemo advocates" on these boards.  This is NOT a fun drug.  And everyone's situation is different.  Many times those in the media or such who propose going "only" natural are those who have had stage 0 or no nodal involvement.  Each case is individual - every BC is NOT the same.  You must look at what yours is and the statistics.

I was given the statistics that most likely 50% chance that mine was gone with only surgery.  These statistics are based on surgeries years ago before chemo and the survival of women with node involvement.  To me, that just wasn't good enough to take a  shot at.  Yeah, maybe I'd be a lucky one, but with four children, I'm throwing everything I have at this.  And I'm going to beat it.  And I went for my first chemo Monday and have exercised every day since.  :0)  

Have you looked into finding an integrative oncologist?  One who combines traditional and natural methods?  I have heard they do exist and maybe that would be a good starting point.  

Following up on an excellent suggestion above:  http://www.integrativeonc.org/

One renown integrative oncologist, who may be within driving distance for you, is Keith Block:  http://www.blockmd.com/

glad it was helpful Adey.  I hope I didn't sound too passive. though.   This isn't a disease to be messed around with - it IS life or death - it is NOT a "wait and see" disease.  It's very frightening.  So is chemo.  I agree with the above poster - saying yes to chemo isn't not being courageous.  Anyone who can lose their hair, willingly submit to an assault on their body and deal with the side effects is nothing less than very brave IMO. 

By the way, I do have a friend whose girlfriend is going with the Gershon therapy for cancer instead of chemo.  She has been extremely ill from it and is not tolerating it well at all.  Because it has caused her body to reject anything foreign, her wounds from surgery are not healing and it's been months.  I just caution anyone who thinks that these other therapies might be gentle, they too can be rather harsh and may not even work. 

I like the links on integrative oncology!  I wish I'd found those when I was looking for an oncologist.  I think that's going to be the future of cancer care, right there; supporting the entire body and the WHOLE person, not just eradicating the disease. 

I think the simple truth is, we tend to defend our choices.  I recoil from the term "enthusiast" in regard to chemo, but I do think the "other" all holistic camp get just as dug in with their ideologies.

There are some facts available, and that is, breast cancer still has tons of research and information on both sides. L-glutamine helps fight cancer, in other studies, it encourages tumor growth.  Anti-oxidants, yes, no.

I have an incredible naturopath I'm working with,and I know she is as subject to varied information on what she offers me as my oncologist.

I don't think the truth is clear, I fall right in the middle.  Due to my age, I chose to go with chemo, and that was after three opinions, one of whom told me that my case, thanks to the straddle of the Tailor-X trial, wouldn't be clear for a while.

Chemo is no fun, I wouldn't lie.  I have a few bad days, then I'm mostly back to normal.  My aunt called me a few weeks ago to report on her incredible friend who went all-holistic, and her BC is back after a few years.  Call it a justification, but it made me feel confident in my choice.  At least for a while.

We are all victims to endless studies and unclear information until there is better advocacy,and one day, a cure.

Linda,

I think you and I are in simlar situations. I also thought no chemo till the oncotype test came back. I'm 57 and the chance of it going to some other place in my body scares me as well. I know I will be tired at least and maybe more, but its only for 3 months, not forever. I start tomorrow morning at 8:30. I am also scared of how I am going to feel. What are you planning to do on the natural side?

Karen

Her2 is aggressive.  I heard this from an onco at Sloan Kettering and one of my friends is HER2+.  She did 6 rounds of chemo and then is currently doing Herceptin for a year.  Her hair is already growing back and she is feeling okay (now doing radiation).

I had DCIS last year and had a bmx.  My cancer came back in 8 months.  I'm triple negative, which is really aggressive (and BRCA1+).  So, I'm having chemo, radiation and ovaries removed & full hysterctomy.  I just took it one day at a time.  I did 4 dose dense AC and doing 12 weekly Taxol treatments.  There are some days I just slept or hung out on the couch.  I never got sick, but felt nauseaus at times.  They give you anti-nausea drugs.  If you do chemo - take them!!!

Good luck!!! 

 mollyann wrote:

The same well-meaning chemo enthusiasts always swoop in when anybody new comes to this forum asking for support in their decision-making. That's why Vivre started her own website/forum.

If you feel overwhelmed, remember you don't have to learn everything at once. Take one step at a time. The old timers will tell you they regret not doing enough research before rushing into treatment.

I doubt they regret that they are around to earn the name "old-timer"-  at least they are still here!!  What if they had refused treatment and then it returned?   

Molly

You ask "What if they had refused treatment and then it returned?" 

 What are the mortality/recurrence actual statistics for every case of breast cancer that was treated with chemo and/or surgery and rads...and what are the actual statistics for every case of breast cancer that was treated with surgery/radiation...and what are the actual statistics for every case of breast cancer that was treated solely with surgery over the past five years?

What is the quality of life for every case of breast cancer that was treated with surgery/radiation vs treated with surgery/radiation/chemo barring recurrence or death, at the end of three years?

What are the death from chemo effects risks for women over 65 vs the same for women under 65? And why won't oncologists provide stand-alone Herceptin for HER2+ women so that the SEs from chemo can be avoided?

Questions I haven't been able to find answers for.

The decision on what treatment plan to follow and whether or not to do chemo is a very individual one.  I believe that every woman, after doing lots of research and asking lots of questions, has to choose the path that she truly feels is right for her.  When I made my decision to say no to chemo, I also made sure that I was comfortable in my heart of hearts with whatever the future might bring.  I promised myself that I would never second-guess myself and that I would have no regrets no matter what. 

As to the issue of whether or not it takes courage to say no to chemo, it takes courage to face this cancer beast, no matter which route you choose.  That being said, I do think that it takes a lot of courage, resolve and self-confidence to say no to chemo.  Speaking from firsthand experience, there is a tremendous amount of pressure brought to bear by the oncologists and other physicians in an attempt to make people like myself change their minds and do what we're told by the medical establishment. 

Mollyann, you mentioned that Vivre had set up a website and forum.  Could you please provide me with a link so that I can visit it. 

 Amy

If your reply was to me, I have made my decision based upon my age and my physical condition, not out of fear or denial.

I am seeking a way to possibly do Herceptin, but am a long way from Boston.

My quality of life is more important than the possible extension of life....a few months tacked on at the end when I may be wishing for it to be over with is not desirable.  I watched my father spend his last year frantically trying everything and suffering immeasurably in the process to no avail.

I have had surgery and radiation and a clean PET scan.  The rest is in God's hands.

I am at peace with my decision.

I appreciate all positions here, especially the questioners.  I think there are a million great reasons to question chemo, it's garbage and a lousy "cure".  But to suggest that long-term SEs outweigh the possibility of HER2+ recurrence is dangerous.  I also think it's a loaded statement, but in these cases, and in node-positive cases, chemo is saving lives. The all-naturopathic camp is good at bashing allopathic, and not so good at pointing to studies and statistics providing real alternatives.

One of the main reasons I didn't go all holistic (assuming radiation as a necessary evil) is that I remain unconvinced there is a holistic tool studied as well as chemo that works to kill cancer cells. I'm not talking maintenance, I'm talking killing the beast.  In grade 3, HER+, triple neg, and node+ cases, no one could convince me that chemo is invariably a bad choice. Chemo may not cure cancer, but I'm equally having a hard time believing that if every gal eligible walked away from it their mortality rates would be in line with those that chose to do it.  You'd have to believe the statistics and online calculators are just a conspiracy of the pharma industry.

I also think it's dangerous to suggest that chemo is a short walk to a destroyed quality of life.  It may not surely guarantee success, but statistically, the possibility it offers outweighs the negative long-term effects.  In stage 2, for instance, it's not about a few months tacked on.  It's about large percentages of people being offered a decade or more.

Perhaps the conversation really needs to go more statistical.  NOT that that is without question, but it's the best we've got for now.

Worldwatcher brings up great questions--some of them I think can be answered by lifemath.net.

I'd also add, if people have other info I'm missing on holistic, great!  I want to learn more, and I desperately want to get away from the allopathic choices.  Like nasty Tamox.