Anyone completely refuse surgery/conventional treatment?

Turkey knocks me out every time. After Thanksgiving dinner, the living room rumbles with the sound of snoring from the couches (and some guests sprawled on the floor). This doesn’t happen when I make other main dishes.

Yes I had a BMX and nothing else. Refused anti hormone treatment. Good luck to all making these difficult decisions.

Nulyte, I'm confused. Your signature line indicates that you had DCIS but you also state that you are Stage 2B. You mention in your post that you had a positive node. A positive node is inconsistent with DCIS. Pure DCIS is always and only Stage 0, with no nodal involvement. Many women (most, in fact) have a combination of DCIS and invasive cancer but in those cases the diagnosis and treatment plan is based on the invasive cancer; the DCIS needs to be surgically removed but other than that, can pretty much be ignored because anything done to treat the invasive cancer will be more than sufficient for the DCIS. The presence of DCIS is usually not even mentioned in the diagnosis (although if DCIS is found, it will be mentioned in the pathology report).

This is important to clear up in the context of this discussion because generally women with DCIS (Stage 0) who have a BMX require no additional treatment; certainly women with DCIS never get chemo and rarely are they even recommended Tamoxifen after a BMX, except in cases where there may be close margins or when someone is particularly high risk for a new primary due to a genetic mutation. On the other hand, someone who is Stage IIB is quite likely to be recommended chemo.

When there is a discussion about refusing conventional treatment, because DCIS is a pre-invasive cancer, the issues and risks are very different than they are for someone with invasive cancer. It's apples and oranges, and really shouldn't be part of the same discussion. There is an active discussion within the medical community about whether or not DCIS is over-treated, and what treatment is necessary for DCIS; sometimes even surgery is questioned (although this is far from mainstream). This is a totally different discussion than whether someone with invasive cancer should have surgery, have chemo (if medically indicated) or have take hormone therapy.

I have been considering stopping chemo for a while...but eager to learn more from others who have stopped/refused chemo (especially any who are Triple Positive). While I had 2 masses successfully removed via lx, with clean margins...only one had Her2+ while the other did not. Had they both been negative - I wouldn't have needed the chemo and gone straight to radiation. I have completed the four sessions of AC...and starting 12 weeks of Taxol this Thursday (along with Herceptin and Perject - which is targeted for my Her2 diagnosis). However, my body feels like I shouldn't be putting this poison in it. I turn 50 on Thursday too...and my 12 year old daughter really wants me to do the chemo if it will help it not come back and I can live longer. However, I am second guessing that.

So ElaineTherese - you didn't refuse any treatment then? And how are you feeling/doing now?

Kdtheatre, a friend and i both wish we could get Perjeta, but it is not yet covered by the Province of Ontario for our tumors. What about trying the taxol+perjeta+herceptin and seeing how it goes? You might be surprised it is not that bad, and then if you do decide to stop, you would be making a more informed choice. Sometimes i've seen people here suggest it is good to consider what choices we can make without having regrets in the future.

I can't help but feel it's kind of a big deal that your young daughter wants you to fully complete chemo. You might have more peace of mind stopping if you find the side effects are rough. But they might not be.

Yes, me and I'm doing fine

research isn't going to change the quality of the substance

Hi Houston2016,

I believe you that conventional and alternative medicine should be combined. I've personally witnessed my former officemate shrinking her tumor by just eating fruits and veggies for about a year and a half.

I got more interested when you mentioned that some plants/herbs are used in Asia to try and cure cancer. Can you please mention them? I would appreciate it very much.

Thank you and God bless.

gmmiph

Hi K62, and welcome!

We know it's scary, but please, think that many, many biopsies come back benign even when the image is suspicious, so try not to worry too much till you get your results. There is a forum for those not diagnosed where you can meet others waiting for test results and worried about developing breast cancer for the first time, see here: Waiting for Test Results.

Keep us posted there, and good luck!

The Mods

Thank you! We don't need to hear how great the medical system is. That's already ingrained in our society. Not many people will be able to alter their lifestyle and eating habits to the extent that it takes to survive with alternative treatments. Yes I might get it wrong and die. That's between me, my God, and my family. It is a road less traveled. That's why we need to be able to communicate with each other. You don't have to keep repeating the same rhetoric. I'm not a child. That's how doctors treat you when they "know what's best".

I was diagnosed with breast cancer in the beginning of August this year. I very happily had a port put in and the very next week showed up for my first chemo treatment of Adriamycin/Cytoxan. I did exactly as instructed. I've always taken a multi-vitamin and have added some of the more common supplements over the years. So my oncologist had approved and felt that was not a problem. I had added in Turkey Tail mushroom a couple a weeks earlier so I asked about that too and it was ok. Everything seemed fine and I had prepared myself for what I thought would be the worst of the side effects. Later that afternoon/early evening, I began getting more nauseated so I took a compazine per instructions. within 20 minutes it got worse. I called and was told to take a zofran. It got worse. Another compazine and another zofran and a couple of hours later, my entire digestive system seized up and as you might expect everything came out both ends. I ended up in the hospital for 2 days. The real "fun" began after I went home. It was a horrible experience. One that I consider to be worse than death. After 2 weeks and multiple side effects, my entire body broke out in hives. Other people get hives, but I can only assume they weren't as bad or I'm just a wimp. Yes, all my hair fell out. It took heavy doses of prednisone and 2 more weeks for the itching to calm down. And a third week for the red spots to heal.

That's just the physical side of it. I can't explain how this works, but within a couple of days of the treatment I woke up and realized that I was "dead". Obviously I wasn't physically dead, but it was a deep dark hole where nothing human about me existed. I attribute this extreme depression to the chemo killing off normal hormonal functions. Nobody seems to stress this side effect. They just say that you'll cry a lot. I'm normally a happy upbeat person so this was a jolt to me worse than anything else. I cried almost non stop for a week. I managed to reach out for help from a naturopath and help to rebuild my stomach lining. I eventually got to emotional stability just before the rash started.

After a lot of soul searching, researching, and talking with my sisters, I made the choice to not get any more chemo. I felt that with my family predisposition it could be a life or death decision. So I'm not advocating everybody do this. It's risky. While researching alternatives, I also got an education on the effects of surgery and radiation. I am more determined than ever to make my decisions wisely and not based on fear. I saw someone post that they ignore sites that start with "The Truth About...". I did that for a while, too. But when my options narrowed, I looked at the information and was pleasantly surprised. It is one of the best sites out there to find a combined data base with a lot of different professionals and their individual treatments. Use your head and fact check stuff out before you put it in your body. I used pubmed a lot also.

As of right now I'm in the beginning stages of healing naturally. I will not be getting breast surgery any time soon. I would like to give my body a chance first. I have the further complication of needing a hip replacement. The joint is bone on bone. I had the other one replaced four years ago and it went well. So I'm encouraged that this will help my overall well being.

It's not all about killing cancer. My goal has always been to get healthy.

Labell and K62,

My cousin underwent a core needle biopsy and was apparently found to be benign. A year later, she was diagnosed staged 2B, two years later, after chemo and Dmx, mets to her brain, months after, RIP.

My first oncologist cum breast surgeon said core needle biopsy isnt always reliable because it only takes a small portion of the tumor which if the part taken was benign, then a wrong diagnosis will be given.

Then I asked my onco/bs how much is the whole chemo procedure and his professional fee. His answer was, "Reasonable enough compared to your life!" I smiled sweetly back at him, thanked him appreciatively and never went back. LOL! That creep!

"My first oncologist cum breast surgeon said core needle biopsy isnt always reliable because it only takes a small portion of the tumor which if the part taken was benign, then a wrong diagnosis will be given."

I think a core needle biopsy is how most of us were diagnosed, it is considered the standard of care and also considered quite accurate. Having a surgical procedure prior to being diagnosed with BC was not what my doctors recommended. A fine needle biopsy is said to be less accurate than a core needle biopsy, but some have been diagnosed that way as well. Not doing any kind of biopsy will definitely not tell K62 anything. Since she's hesitant about doing anything, I am suggesting she do the least invasive procedure possible (which is not a surgical biopsy) to get some answers. My core needle biopsy showed I had BC: very low grade, ER+/PR+, Her negative, tubular and knowing these things helped me to decide on my treatment-in my case I went mostly conventional, but the results of my core needle biopsy told me I had lots of time to make treatment choices, seek second opinions, etc.

Even though she states she wants to do alternative type treatments, she needs to know what she is treating. If it is a benign but painful cyst, the type of treatment (mainstream or alternative) she might opt for is quite different than is she has BC. At this point, I think she simply needs to know what she's dealing with.

Book recommendation:

The Complete Natural Medicine Guide to Breast Cancer--

A Practical Manual for Understanding, Prevention and Care

by Sat Dharam Kaur (Naturopathic Doctor)

This book covers an enormous amount of information, from understanding breast cancer to the many topics we have covered here, and much much more. Whether you have chosen strictly alternative treatment, or as complementary to standard treatments, this covers, in-depth, many, many options.

I originally got it from library, but bought my own copy from thriftbooks.com for just a few dollars. Really helps increase understanding of just what we are fighting and our options, especially natural ones, for doing so.

mapat:

I too have a strong faith, a positive attitude, and believe my body can heal itself. At this time my cancer is not "aggressive" so I have put together an eating plan and supplements that help my immune system and some because there is some research to suggest that they kill cancer cells.

I think it is important to understand that these are cells from our body which have changed to be "cancer". This gives me hope that my body can change back with the right prompting. So it's not the same as a pathogen which wasn't supposed to get in there to start with. I'm keeping my option to have the tumor removed eventually. Most of the success stories that I've read where the person has beat cancer naturally, have been after they've had the tumor surgically taken out. There are only a few that are shrinking or going away. I saw an article yesterday where a woman had a re-occurrence of cancer and decided that drinking 5 lbs of carrot juice a day was the "cure". She says it worked.

More often people like Josh Axe's mom have used multiple therapies to treat cancer. Also, you have to understand the fact that a breast cancer tumor is not the thing that kills women. The breast is not a vital organ. When women die of breast cancer, it is because the cancer spread to a vital organ. Like the lung or liver.

So I'm including a modified citrus pectin supplement which has shown to be effective at preventing metastasis by keeping the cancer cells that escape from sticking to other organs. This is a little expensive and the clinical studies are using a dose of 5 grams 3 times a day. The studies that have been conducted use PectaSol which is the trademarked version.

I just saw an alternative medicine doctor (a licensed MD) this week. My insurance will only cover the consultation. I will have to pay for the nutritional lab tests and any therapies that are available in her offices. This is such a shame since I do have really good insurance and the chemotherapy would have cost them more than 10 times the amount.

If it's of any interest, I will keep sharing the things that I'm trying. The natural cures that help cancer also help with many other physical problems.