Decision Point | I do not want chemo, rad, or hormone therapy. I need to find others who have chosen

JKD123

Anyone doing more natural methods? Not interested in chemo, rad, or AIs at all.

legaljen1969

I am taking Anastrazole. It has not been as bad I expected. I am not a super "unhealthy" person but I did not go the all natural route either. I am sure there may be some here who have gone that route. It is definitely the most holistic path to take. You may find yourself discovering things about your supplements that you didn't previously know- especially the many foods and things that contain soy and other phytoestrogens.

If you have already been leading a very holistic lifestyle, at least you may not have to make so many lifestyle changes. Exercise is definitely good for you. Of course you know that already.

Here are the the main things I have to say (1) be sure to give yourself some grace and take care of your mental and emotional health as well. (2) We are all on this journey together, but each one of us has an ever so slightly different path to follow. The steps are a little different for us all. You will continue to notice that cancer is definitely NOT a one size fits all or cookie cutter process. There are patterns and treatment protocols, but since we are all individuals- the path is different for all of us.

I have found that many people who have always lived a very natural, holistic, super healthy lifestyle have a harder time coping with the emotional aspects of illness than some of us who know we haven't gotten it all "right" and need to tighten up a bit. I have another friend who was diagnosed around the same time I was and she is extremely "health conscious" and she really hit a wall- a huge "Why me? I have done everything right. This is not supposed to happen to me. I don't deserve this. I have been so careful." I asked her though, if I "deserved" it for eating processed foods and being a bit overweight. I mean, I guess I "deserve" it more than she does when the world looks at it. We are very close so she knew I wasn't being mean about it. We both realized that neither of us, nor anyone else we know, "deserves" this. She ended up choosing to have radiation, despite the fact she would have preferred to do it all holistically.

We have been there for each other through some really deep valleys in our lives. Our cancer journey has been a little crazy. She was able to admit to me that she was very upset that she had to go more with more "invasive" treatment than I did- which is what she considered her radiation. I am not saying that is NOT invasive. But she has lumpectomy and needs radiation. The disease in my breast was more widespread and I ended up having a mastectomy, which got all of the bad tissue but it ended up taking radiation "off the table" for me since they got it all. So she kept MOST of her breast but had radiation. I lost my entire breast but avoided radiation. I think both are equally invasive in different ways.

She is still very conscious of her food intake and her body. She does her best to eat a very healthy diet, but she has learned that she has to just say "Okay, it happened. I will do all I can to take care of myself, but it can happen to anybody. It can happen to any BODY. Even the ones that run on the purest fuel." She has influenced me a lot on nutrition and I have just tried to be a friend to her and remind her that it is not her "fault" this happened. She didn't do anything to make it happen and there is likely nothing she could have done to prevent it from happening. It's just rogue cells that did bad things.

I wish the best to you and hope you are able to fight this completely holistically. I hope you are able to find support and guidance on how to do that.

ITLBOK

her2+ er+ 2b stage My cousin invents treatments for cancer. Latest pill form non Hodgkins lymphoma. Same kind of response from a Dr in which the marking prior to surgery. However, You are doing all the right things. You still got cancer.1. Water. I believe it was the main culprit as I lived on a g course and they used reclaimed water. Environment has more to do with cancer than eating right. Rad.. Super easy. no side effects at all. Chemo. 7 years ago. Her2+ meds for 1 whole year. Your case maybe 6 sessions every three weeks. No big deal to me. I never let it sink in. I looked at it like a horrible job I had to do for a year. You don't have to loose your hair. New things on the market. But to me that was scary and fun. Love short hair now. Chemo kills cells. very much like the covid shot. It puts a protein on the cell and asks the cells attack the cancer. Hated the after pill. Anastrozole. worst part of the whole thing for me. stiff fingers. horrible. with stage 1 my sister in law made a big deal out of it and went through the whole thing mastectomy and all. To each your own. Way out there in my opinion. I do have a best friend who is an oncology nurse that I can ask her opinion! I think her life style is much like yours. Mine is not. I'm not a big eater. I love to play golf and I have filters in every home. I will Never drink city water again. Never. I did my treatment in Naples and changed teams to do radiation in Terre Haute Indiana. the good thing about chemo is that you don't remember much. Soy is NOT a good substitute for estrogen. doesn't work. I'm cindy and happy to help get info. Don't judge the cover of the book before you read more. I did it all by myself and my husband worked out of town. Came in when I felt good to play golf. I divorced him when I got my energy back. I still did it and would do it again. I slept the whole time. I felt tired for apex 5+ days after chemo. once every three weeks for 6 sessions. then 33 treatments of radiation. not even tired. It was a no brainer for me. You've got this girl. If you want a good oncologist tell me where you live and I will find out which dr gets the best results. That would be a good second opinion. God Bless and filter your water...Happy Easter. Cindy

legaljen1969

@ITLBOK, you offer a lot of good suggestions. The water thing is huge. We have many golf courses around here, so I can definitely see how the recycled, reclaimed water thing would be a big issue. My husband is a spray tech on a golf course so I know they use a lot of chemicals to keep those greens and fairways "green."

I really do take issue with the fact you imply that anyone who has a mastectomy for a Stage 1 cancer is somehow inferior or stupid. I don't love the fact that I am missing a breast. I don't love the fact I am taking anastrazole, but I did the research and listened to the doctors I had and made an informed decision for myself.

Each of us has our own set of circumstances. I don't judge someone else's treatment choices. I don't know what their doctor told them. I don't know their medical background. Your "to each your own" in the context of your post, is NOT a non-judgmental "live and let live" but more a different way of saying "idiot."

I don't know your sister-in-law so I can't speak to whether her decision to have a mastectomy was overkill. I can't speak to whether she was overly dramatic. I don't know her family history. Presumably you do. All that said, I had a unilateral mastectomy for a Stage 1 cancer. We tried a lumpectomy, but couldn't get clean margins until a point when my breast would have been completely disfigured anyhow. Based upon the best information I had, discussions with my surgeon, oncologist, and others who had been down a similar path- it was decided to do a unilateral mastectomy. When I was first diagnosed, I was told it was a Stage 0 DCIS. I discussed the "leave it alone" theory and almost did just that. By the time the biopsy was done, it was discovered there was much more diseased tissue. I wondered if the biopsy pierced the area and let it spread more. I had a lot of anger, believing that just leaving it alone might have been better, but the point was that now there was evidence of more disease and it had to be addressed. It was shocking to me that a mastectomy was being recommended for a cancer at my stage. I would have thought it was overkill at that time, but presented with all of the evidence- I, with my care team, made the decision that seemed best. It wasn't a decision made over a cup of coffee and the morning crossword puzzle, or Taco Tuesday with my friends, which is what you seem to imply.

We don't all have cousins who are medical researchers. We don't all have a best friend who is an oncology nurse. I didn't have a bilateral mastectomy or prophylactic mastectomy "just" to get rid of the worry. Having been through the process of a unilateral mastectomy, I see much more clearly now that there is probably much more thought put in to "take them both" than just a flip decision. I didn't decide on my course of treatment "just" to get rid of the worry, but I don't fault those who do make that decision for whatever reason. I seriously doubt there are many people in this world who throw caution to the wind and just say "What the heck, take it all" on a whim.

I see that you did do pretty much the whole treatment spectrum, and whatever you and your treatment team decided was appropriate for your circumstance. I am glad you made it and had success with your treatment. You are very fortunate to have relatives and friends on the front lines so that you have access to "the latest and greatest."

MarcieB

JKD123, I understand your reluctance to go the *traditional route* with chemo and all the trimmings. I daresay, NONE of us were eager to do it and I bet most of us did look into another option. So, maybe the best thing to do first is search for the possible options and weigh them all out. Did you get a second opinion? Have you looked into Immunotherapy? Clinical trials? Do you have access to a holistic doctor who has treated people successfully? Unfortunately, the world of alternative medicine is full of unscrupulous types (dare I say Quacks?).

I know there is good solid information to help you. I know supplements and exercise and meditation are all good things. Unfortunately, this alternative route did not work for my brother, and he was very committed. So, knowing that, I went the traditional route to rid my body of the cancer and now I am using all the information he gathered to regain my healthiest body possible. That is what has worked for me.

I hope you will stay in touch with us here, whatever you decide. We can all learn so much from each other.

TerriL

I'm sorry you are going through this. I went through all the chemo, surgery, radiation. I had a friend who chose to go the natural route and recently died. It was heartbreaking. Please make sure to get several opinions and use a trusted alternative medicine doctor.

ChicagoSandy

Chemo does NOT "put a protein in the cell that tells it to kill cancer." What you describe is immunotherapy, which is not necessarily appropriate for all breast cancers--only those that are HER2+ &/or metastatic. And herceptin/perjeta--immunotherapies aimed at HER2+ cells--require at least an initial course of chemo to work.

Chemo is "cytotoxic:" it damages (& hopefully, destroys) rapidly-dividing (i.e., constantly growing/turning-over) cells, which is what more-aggressive cancer cells are (and why it is no longer prescribed for less-aggressive breast cancers such as early-stage Luminal A). Unfortunately, hair follicles, nail matrixes, taste buds and mucosal linings (mouth, throat, even stomach) rapidly grow/divide/turn over--which is why hair loss, fingernail damage, mouth sores, metallic tastes and digestive upset are side effects of chemo (and thus indicators that it's working--"it's not a bug, it's a feature").

Tumors positive for estrogen receptors (and especially those with progesterone receptors) are treated with endocrine therapy--often mis-labeled "hormone therapy." (It's more accurately ANTI-hormone therapy). If you're not yet through menopause, you'll be prescribed tamoxifen, which blocks the tumor cells' receptors' access to the estrogen made in the ovaries (and elsewhere). If you're done with menopause, the anti-estrogen drug is an aromatase inhibitor, aka "AI." Even if you no longer have functioning ovaries, your adrenal glands & fat cells produce an androgen that the liver enzyme aromatase converts to estrogen (that's the "Reader's Digest version" of a slightly more complex metabolic & endocrine process). There are 3 AIs: anastrozole (Arimidex), exemestane (Aromasin), and letrozole (Femara). They all do essentially the same thing: prevent your body from making estrogen (at least from making enough of it to feed any leftover tumor cells).

So if your cancer is (or was) ER+, regardless of what type of surgery you had, whether or not you get chemo (which statistically, you likely won't) or radiation, you need to take endocrine therapy to deprive your tumor cells of estrogen--either by tamoxifen clogging up their estrogen receptors or an AI keeping your body from making estrogen. If you elect not to take endocrine therapy for an ER+ cancer, you are playing with fire.

So you did everything right with your lifestyle but you still got breast cancer? Welcome to reality: "stuff" happens and we usually have no control over how or why. Genetics (both inherited and spontaneous mutations), early menarche/late menopause (i.e., longer exposure to estrogen), few or no pregnancies (ditto), and the fickle finger of fate are all likelier causes than what you ate or drank, where you lived, how you slept, and how much or little you exercised. And certainly your attitude or religious faith have no bearing on whether you get breast cancer, only whether you can enlist them to help you through it emotionally & spiritually.

"Alternative" treatments? The only thing they are "alternative" to is disease-free and overall (all-cause mortality) survival; forgo endocrine therapy for an ER+ cancer (and radiation after breast-conserving surgery) and you are greatly increasing the odds of recurrence, perhaps metastatic.

Kalee

Doing holistic treatment more than likely isn't going to get rid of your cancer, and more than likely, the cancer will go further...which is exactly not what you want...the more the cancer progresses the harder it is to treat, and the diagnosis much tougher. I am triple negative, tumors were grade 3 (aggressive), had i not done surgery, chemo, etc., i probably wouldn't be here to day....everyone is different, read up on treatments, speak with your doctor, the nurse navigator is also a good resource. Best of luck to you.

MarcieB

I agree with ChicagoSandy when she says attitude and religious faith have no bearing on whether you get breast cancer or not. But both attitude and faith can make a huge difference in how you respond. Staying positive is powerful.

cak61

My neighbor wanted to go the holistic route and it went on to metastasize and she died.
Please consider attacking it with both approaches.