Anyone completely refuse surgery/conventional treatment?

createonpurpose:not a number, big bucks for your insurance company

Sorry KDtheatre I got mixed up when I tried to update my diagnosis. I was diagnosed 8 years ago with stage 11a IDC and ILC and DCIS in opp breast . It was grade 3 small 1cm with 1/14 nodes affected. I took tamoxifen for 5 years had 6 rounds of chemo and took DIM which I believe is callled Indole in other countries ( I am from near Melbourne) (DIM is a estrogen natural blocker from crucifious vegetables) for the whole 8 years. I also took vit D, zinc magnesium and had Vit C infusions during chemo. I took evening primrose and fish oil tablets daily. I ate a dairy free low meat diet. I exercised daily ,meditated and thought I had given myself the best possible chance against reoccurrence. It returned in bones extensively Nov 2016 . Since then I have taken Femara and had radiation and started Chinese medicine and acupuncture. My latest blood work have shown my CA 15 tumour makers go from the hundreds to 37 (2 above normal) and my bone scans show healing lesions to very stable. I am Currently using the Chinese medicine to rebuild my immune system and help with pain and fatigue. All this has happened in 14 weeks. The jury is out whether I start taking Indole again. My point is that you are never really In the clear it is such an unpredictable disease but all my years of alternative medicine have helped me recover very quickly to the point my oncologist has never seen anything like it and had signed me off to his nurseI had a lot of stress 18 months prior to stage 1V diagnosis so who's knows. I also have a strong faith Delvz

tes

Thanks, everyone, for sharing your courage and your stories of success and non-success. I am trying to learn all I can to help and not do further harm to my body. I had DCIS with one lymph node IDC involved. I was in the gray area for chemo/rads after surgery. I decided to work on being healthy as I have read so many recurrence stories on this site, even for gals who did ALL standard treatments recommended. It seems like a crapshoot to me and I would rather give my body a chance to prevent cancer growth rather than poison and damage its natural abilities for the future.

I just found a new site, chrisbeatcancer, and he thinks like us on this feed, and did tons of research, changed his life and survived 13 years so far. He has a program just offered last week called Square One cancer coaching program. Ten lectures, a book and I am not sure what else. I heard 3-4 of the lectures free and it was AWESOME. I am getting it. He has done all the research I have not had time to do.

My new eating plan is lots of mushrooms, tumeric, garlic, veggies, tomatoes, olive oil, nuts, fermented foods, seeds, apple cider vinegar, and fruits. The salad is the main dish! Hardly any processed foods or processed grains, caffiene, breads, sweets, meat, egg, dairy or starchy stuff. Hardly any manmade foods like crackers, pasta, cookies, and things like this. At least 1/2 hour good ecercise per day.

It is easier than I thought!! Probably because I think my life depends on it now. Lost 5 lbs. in 2 weeks..... for the first time in years, easy! And I am 58. I had er/pr+ and hoping to get my weight down where it belongs in the 140-150 range to avoid taking the estrogen blocking drugs. I have a long way to go ........at 189, but have always had a sweet tooth and just stopped feeding it!!

I am encouraged that I can go into a restaurant with my husband now and he gets a burgy and fries and I can be happy with a side salad or coleslaw. That is a huge win to have gotten so much better discipline on what I'm eating than ever before.

It helps to hear your stories and we can all help each other!

Fearless

Diane, why did you do Arimidex before Tamoxifen? And what SEs did you get with both?

A couple of caveats (and please forgive me if I sound like a broken record):

1. That’s not how aromatase works, because fat does not "turn into estrogen.” Fat cells and adrenal glands secrete an androgen (male hormone) called androstenedione. If that sounds familiar, it’s because it’s what Sammy Sosa and Mark McGwire took during their 1990s home run wars. (It was available in health stores and was not considered an “anabolic steroid” at the time, so they got away with it back then). The liver secretes an enzyme called aromatase. The aromatase is what converts the androstenedione—not the fat itself—into a form of estrogen. We can live with less body fat, even with some fat cells surgically sucked out, cut out or frozen to death—but we can’t live without our adrenal glands.

2. “Chris” who “beat cancer” did not have breast cancer. He had a form of digestive system cancer that was slow-growing and very rarely metastasizes. He is (was) also quite young & strong. There is no one disease called “cancer,” just as there is no such thing as a generic and interchangeable “cancer cell.” There is no one disease called “breast cancer,” because there are four different tumor-cell “types” (luminal A, luminal B, HER2-type and basal-like) that behave differently and respond differently to different treatments; and within those types many different permutations and and combinations (in situ ductal and lobular, invasive ductal and lobular, inflammatory, mucinous, tubular, papillary, etc. etc.) that also behave and respond differently.

If a site or source cannot explain exactly the science behind the process by which a particular treatment—conventional or alternative—works, it is not a credible source. If it gets the science wrong, it is not a credible source. And don’t cite the hoary old argument “we can’t know the exact science behind a treatment because drug companies don’t do studies because they can’t make money off it…” That’s horse hockey (apologies to horses and hockey players): biology, chemistry, biochemistry, anatomy and physiology are available to anyone who wants to study it and is capable of studying it. “Research” doesn’t just mean clinical trials—it’s being scientifically literate. I’m not talking about results (i.e., how well something works, or if it works). I’m talking about the theory of how it is supposed to work.

DIM is mentioned by a credible source (MSKCC), so it is worth a look if endocrine therapy is unendurable, as it is for many. Checking out how and why certain foods affect various forms of breast cancer is reasonable. But to refuse all conventional treatment and even harbor no intellectual curiosity about the specifics of our own particular diseases (as did a new visitor to our support group who ditched neoadjuvant chemo after 3 rounds—fair enough, but she couldn’t name which drugs she was given, couldn’t say what kind of breast cancer she had nor its stage or grade--she called it “type 2”, and refused surgery at all--describing being fascinated how her lump changes daily, and taking vitamins and going on an extremely restrictive diet instead) is just plain wack. It’s your quality of life, true, but ultimately your life itself at stake. Go integrative, go alternative….but go into it fully informed with your eyes wide open. An open mind without a willingness to be critical and analytical might as well be a closed one.

ChiSandy thank you for your words of wisdom . The whole experience is one of choices our own research and weighing up quality of life over severe side effects from treatments. As a newbie stage 1V with extensive bone mets that have become stable to healing within 14 weeks with tumour markers going from hundreds to 35 (normal) what I have found works for me is

Take the aromatise inhibitors prescribed by oncologist and his team if hormone positive

Moderate exercise daily if possible

Try to reduce stress or toxic people as much as possible

Rest daily read a book meditate sleep etc

Try to get good quality sleep and sunshine

Take vitamin D if low in it

Eat small meals with plenty of fresh vegetables and fruit with small amounts of protein whether from animal or vegetables or nuts

Do something for yourself that you enjoy

If taking apple cider vinegar or herbal treatments massage etc makes you feel better than do them

Don't fight the disease live well with it and pray for remission or to stay free of progression or reoccurrence

it's disrespectful for anyone to disbelieve me that for nearly seven years now I've had a growing thing on my left breast which is terrible looking, needs dressing now once a day, sometimes bleeds a lot, a yearor two ago I nearly bled out, as in a second of calling an amblance when the hospital said to hand up and dial 911. during that second the bleeding stopped, but I needed to keep the paper towels on which had stemmed the blood and were bright red, over a week before I had the nerve to take that dressing off. well perhaps I don't have cancer, call it what you like but it's certainly somethng which can get help here

abby dear,

We will never see eye to eye on the topic of self diagnosis. i do not know if you have bc and neither do you, yet you've been here for many years claiming you do. It's not a matter of disbelieving you so much as lack of confirmation from someone who has the skills and training to confirm a diagnosis. Kind of like your self diagnosis of having had AIDS, twice, which you cured with loquats or kumquats (sorry I forgot which one). Sorry, but just deciding one has a particular disease, with no reasonable confirmation, doesn't make it so. I know you are older and have had many experiences in life, but I don't understand continuing to insist you have a condition for which you've had no confirmation whatsoever. Clearly there is something going on with your breast, but breast cancer ? Maybe, maybe not. Those of us who really do have breast cancer are here for information and support, as this is what this site is about. Is this a general breast care site? No! Happy that you've gotten some help here, but we are not medical professionals and you have no idea whether you have bc or not. We've debated this for 5 years but without confirmation, well, who knows.

PS: How many of us can imagine joining a forum for heart disease, Alzheimers etc. and claiming we had those diseases because we had self diagnosed them? Personally, I have too much respect and consideration for those who really do have those illnesses to ever consider such a thing.

when I got black spots on m skin spring and fall for a number of years, and then none for a while until I got this trouuble, and none now for a few y ears, I'd think I had aids, this the adult time. for the childhood time I was playing on the gravel of the grade shcool grounds making "rooms"and right over the fence there lived old annie, an amerindian who had lived in that afobe sice I'd come to town the year before and for decades before that, I got a blood blister on my hand and then viral pneumonia for which I was hospitalized, fed with glucose intraveneously and catheterized. I think probably aids but very long time before the epidemic

Phoney bologne nonsense, abigail.

I have never seen such ridiculous blather here before. Get a diagnosis or STFU already.

It amazes me that your posts are allowed to remain on this site. Perpetuating misinformation and obfuscation when people come to this forum for real information. Someone could get hurt.

I have a friend who died from breast cancer, trying to treat herself, against legitimate medical advice. She left two teenage children without a mother. This is serious business.

this just came through my fb feed today:

" a mother came into the emergency room at UCLA. My colleague (who is now a world-famous cancer specialist) and I were asked to see her in the emergency department. Her husband had brought her in with a large ulcerated infected cancer in her breast. The cancer was very advanced and had entirely replaced her left breast and had grown down her chest wall. The odor was horrific. The cancer was obviously widespread, and she was in really bad shape. They had three kids at home."

"I turned to her husband and said, "Can I ask how long has she had this?"

"She found it about five to six years ago," he said.

"What treatments has she had?" I asked.

"She's been taking different natural remedies and putting a salve on her breast to make it go away," "

http://www.slate.com/blogs/quora/2014/02/09/cancer...

"This community is supposed to be a safe place to express one's perceptions, experiences & references."

True, for real and diagnozed breast cancer patients seeking alternative treatments. Spreading misinformation based on self-diagnosis for a serious illness is beyond irresponsible.

I've posted extensivly on my symptoms. if you had angina bronx girl would you think you had heart trouble without getting diagnosed by a professional? diagnosis for this trouble as I've seen and read causes pain and trahma and possibly new cancer

Angina, diabetes, kidney, liver problems etc. Nope, I would never self diagnose for any potentially serious ailment. Paper cut, colds? Yes, I'll go without a doctor on those, but I know that bc falls in to theserious ailment category.

Abby, we will never see eye to eye on the wisdom of self dx and tx, nor on whether those with self dx'ed major illnesses should participate on forums with those who have a confirmed dx.