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Topic: My choice--refusing treatment

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Jan 24, 2017 01:34PM - edited Jan 28, 2017 01:00AM by Monetswaterlillies

Monetswaterlillies wrote:

Hi everyone,

My post won't be too popular but I'm entitled to feel the way I do--to fight cancer or not. Im 50 and recently dx with IDC. Clinical staging is in the works but regardless of the results, I just don't care to treat it. I have my reasons, and would like to talk with others who feel similar feelings.

Thanks so much, everyone.


Dx 1/20/2017, IDC, Right, Grade 1, ER+/PR+, HER2-
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Jan 24, 2017 02:56PM abigail48 wrote:

hi CA. check out my posts. I

Ive had no conventional treatment including no diagnosis and I'm going on 7 years still alive. I'm nearly 80 though could be the reason

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Jan 24, 2017 03:08PM Pammac47 wrote:

Monetswaterlilies-

I admit curious, but I respect your rightto make own choice. I wish you the best. Many hugs...

Chemotherapy 3/22/2016 AC + T (Taxol) Hormonal Therapy Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jan 24, 2017 03:20PM - edited Jan 24, 2017 03:22PM by Meow13

Are you going to have surgery to remove lump? To be honest all the treatment I really wanted was to remove the tumor.

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Jan 25, 2017 11:18PM Purpleisland wrote:

no chemo or radiation for me. Cancer diet, iodiral, curcumin, green tea. I'll try everything else

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Jan 26, 2017 01:38AM Meow13 wrote:

I am with you on the no chemo, I didn't require radiation. I am on the fence on my AI treatment. I only did 4 years but I had permanent side effects nothing earth shattering but annoying.

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Jan 27, 2017 08:29AM VeryDetermined wrote:

I am 50 in March and so happy to see I'm not alone on the island!

I did the surgery.....that's it I'm out.

The chemicals in the chemo are GOING to cause other problems down the road.....this isn't a maybe. The MO said it would have a 1.6% chance of stopping death from BC in 10 years (doesn't say it won't reoccur btw), but it has a chance of creating leukaemia!!!!! I will take my chances....

The tamoxifen is my last decision. I originally thought I would take it, almost everyone I know who could take it did. I started reading and I can honestly say it was really disturbing! The origin of the drug, one particular study to validate it, the fact that it is a carcinogen on the WHO and cancer sites, the possible side effects which can be beyond serious in my eyes, and the fact that it can still come back after all that(and stronger), I can't do it.

Now I was stage 2A (3cm no lymph nodes involved), another area was 1.4cm. Was multi centric in the right breast, something unknown in left, 3 aunts with BC, I chose a bilateral mastectomy. Turns out I also had Pagets on the right, so good choice!

My plan is diet, exercise, supplements, emotional and spiritual well being. It was always about everyone and everything else for me, now this will change. BC was my wake up callto treat myself better.

There is an abundance of information out there, choose wisely (from reputable sources), read and think outside the box a bit (recognize full hippie fanatic vs pharma front man and anyone who receives bonus payment for the kind of treatment they recommend)

Do what you can live with. It's a hard decision, I am trying to come to terms with mine......

Yet don't want to upset MO lol how silly!!!!

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Jan 27, 2017 09:45AM dtad wrote:

Hi everyone. I had a BMX and refused all other treatment. My reasons were multiple. However , the most important one being I already suffer from a debilitating autoimmune disease. I refuse to take anything that might further affect my QOL. I do take several measures to lower my estrogen naturally. Good luck to all...

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 27, 2017 12:45PM - edited Jan 27, 2017 12:46PM by radgal

I read your post with interest as I felt as you did when I was diagnosed with IDC, stage 1.

Too many choices regarding lumpectomy, single versus double mastectomy, radiation therapy and such.

I was resigned to do nothing rather than have to make major decisions with scary side effects.

I found a forum for breast cancer women who chose to do nothing and read all the posts with interest.

In doing so, one woman mentioned intraoperative radiotherapy (IORT) which is radiation therapy done during surgery after lumpectomy.

Hmmm...

She mentioned University of California Irvine.

I went to their website and read about IORT.

I googled IORT and from it, met my surgeon, Dennis Holmes, MD. He pioneered the procedure.

I met the qualifications to receive IORT with lumpectomy.

I wouldn't have to lose a breast. I wouldn't have to undergo 6 weeks of daily external whole breast radiation therapy.

Wow!

That is what I had -- lumpectomy with IORT.

I am grateful.

I would not have learned about this had I not first opted to do nothing and read about other women on the other forum who didn't want treatment.

I understand -- cancer is daunting but so is treatment.

Regardless of your decision, you are not alone and I hope you find comfort and peace in whatever decisions you choose.

Dx 7/1/2015, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 8/25/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 8/25/2015
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Jan 28, 2017 12:43AM - edited Jan 28, 2017 01:04AM by Monetswaterlillies

Hi everyone,

People look at me like I'm crazy when I mention that I don't want traditional treatments, and I feel like even on this site, those of us who feel the same way aren't too popular lol. I also feel guilty knowing how many people are doing everything possible to be in remission, and i wish them that more than anything. Yet, at the same time, I'm entitled to feel the way I do and to make decisions that feel right for me. The thought of putting toxic drugs into my system...I just don't want to do it. Will i die in 2 years if I don't? Who can say... I might die tomorrow driving to the grocery store. I offered to be a "lab rat" to help further IDC research but my treatment team wouldn't hear of it--they can't understand why I don't want to treat my cancer, and said that the current treatments work and that no further clinical studies are being done in this area LOL. Hmmmm. At any rate, love and blessings to each and every one of you beautiful ladies (and men).

Xoxo

Dx 1/20/2017, IDC, Right, Grade 1, ER+/PR+, HER2-
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Jan 28, 2017 12:46AM Monetswaterlillies wrote:

P.S. i am having surgery but nothing else.

Dx 1/20/2017, IDC, Right, Grade 1, ER+/PR+, HER2-
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Jan 28, 2017 02:52AM Meow13 wrote:

I had little to no real physical effects from my mx and DIEP it was the hormone therapy that effected my overall health. I took the risk I hope it was worth it. My breast surgeon thought I was nuts not to do the recommended chemo. I am so glad I didn't do it.


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Jan 28, 2017 09:41PM LisaAlissa wrote:

Monetswaterlilies said: " I offered to be a "lab rat" to help further IDC research but my treatment team wouldn't hear of it--they can't understand why I don't want to treat my cancer, and said that the current treatments work and that no further clinical studies are being done in this area LOL. Hmmmm."

Your treatment team is not being helpful to your needs as a patient. There are very likely trials that would be happy to have you. But you generally need to be near the researcher, have a physician team who will be willing to work with the researcher or you need to be willing to travel to the researcher (often at your own expense!).

You can search for trials through a site like www.breastcancertrials.org , the Susan Love Army of Women site, or through some of the govenment sites (for example, NIH NCI Supported Cancer Trial Matcher). If your docs aren't willing to help you find a trial, there are definitely others who will help you!

All the best,

LisaAlissa

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Jan 28, 2017 09:59PM MelissaDallas wrote:

The medical community considers it unethical to not treat cancer, so she can't be in an untreated "control arm" of a study because there isn't one

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jan 28, 2017 11:53PM Bright55 wrote:

yes you are entitled to choose your own treatment or nontreatment

For me with dcis i had options as well .i chose old fashioned mascetomy no lymph node invoved so the odds of reoccurance were 99.999 percent reoccurance.no other treatment got on with life

Rare but it does invade and .. four years later now have mbc.

Lymph node involvement would be the reason for chemo and radiation treatment protocols to follow

My recommendations be vigilant have biopsy and CTscan AFTER A YEAR .i had ct for other health issues so was picked up

Still no chemo or radiation and leterzole working!

With breast cancer it is very hard to predict the reoccurance ...some number crunchers with stats think they know but there is always the unpredictable with changes to stages grades and status

Goodluck with your health checks




Dx 2011, DCIS, Right, <1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 2016, Right, 2cm, Stage IV, metastasized to lungs, ER+/PR+, HER2- Hormonal Therapy 2/4/2019 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Mastectomy: Right
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Jan 29, 2017 12:18AM VLH wrote:

I wish the government would maintain a database of people who don't have treatment. I never judge someone for their treatment decisions.

The surgeon I really liked wouldn't operate because I refused to do the recommended TCHP neoadjuvant chemo based on my core needle biopsy showing ER/PR- HER2+. As it turns out, my solid tumor pathology showed triple negative so I would have had Herceptin and Perjeta for six months, perhaps providing no benefit, and wouldn't have had the Adriamyacin and Cytoxan drugs generally recommended for triple negative. As I lie here exhausted, sore from having one ineffective port removed and a new one inserted, struggling to breathe from the blood clots in my nose and annoyed by neuropathy in my hands, I'm questioning the price I'm paying in pursuit of an 8% improvement in my survival odds.

Your body, your choice!

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Jan 29, 2017 12:46AM Wildplaces wrote:

Hello,

From the outset let me say that I respect whatever decision you make about your BC.

But as you are not staged or (I am assuming) had surgery ?? there are so many options/avenues available to you both in integrative cancer care and the more main stream medical care.

I have had some treatment (as you can see 😊😱) and still very much find myself at the very very beginning of this process which for me it is more about living the best life I can with my family, then spotting a one stop solution or drug.

It sounds like you locked heads with a conservative oncologist - who probably struggles with your decision - as in a previous post perhaps a team sensitive to your specific needs might prove better.

I am happy you brought up the "fight" issue. Outside of making sensible lifestyle choices I am not sure that fight is such an optimal word when dealing with cancer. The person who gives it all, runs marathons, takes all medications but for some reason dies from cancer - do they loose? Or does the medical/science community fail them? Or ...

I prefer to say that I am trying to take care of myself/living my life in the way I best know at this point in time.


You have time to search and find the people that understand and serve you best.


Take care, 😊

Dx 8/5/2016, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Surgery 8/11/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic ovary removal Chemotherapy 9/11/2016 AC + T (Taxol) Radiation Therapy 2/21/2017 External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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Jan 29, 2017 02:49AM Meow13 wrote:

I don't believe I have been included in any statistics. So when I hear the stats I always wonder how many were included, etc...

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Jan 29, 2017 08:29AM dtad wrote:

Hi all. I agree there are no studies on those of us who refuse treatment, and there probably never will be. Who would pay for it? Certainly not a drug company! I also believe that there isn't that many of us out there to study. At least none that would fess up to it. At least we have a voice on this forum. Good luck to all navigating this disease...

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 12, 2017 03:17PM Fearless59 wrote:

Thank you, everyone, for sharing what works!! I get kind of peeved at naysayers posting here. We are here because we believe our bodies can survive better without being poisoned. I am with you 100%. I got surgery and will do nothing else but the home remedies.

Dx 12/7/2016, DCIS/IDC, Left, 6cm+, Stage IIB, 1/4 nodes, ER+/PR+, HER2-
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Feb 12, 2017 08:26PM Meow13 wrote:

Fearless, I actually went against the recommended treatment. I refused chemo but caved on the mastectomy. I did want the cancer tumors removed. I took hormone therapy thinking I would have no permanent side effects, I was wrong. Not sure what I would do if the cancer comes back. I like being in good overall health and I don't have much confidence in doctors treating cancer.

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Feb 12, 2017 10:25PM 9lives70 wrote:

meow--what were your permanent SE's

Everything is more beautiful because we're all doomed 💃🏻 Dx 12/6/2016, ILC/IDC, Left, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 13, 2017 08:36AM edwards750 wrote:

It's your call. After all it's your life not your doctors. Having said that I did go the treatment route prescribed by my oncologist. The thing is though we are not all one size, fits all. I had an early stage BC and had a lumpectomy and 33 Rads treatments. I did take Tamoxifen as well for 5 years. I was 5 years out last August. No guarantees whichever way you go just don't second guess yourself or look back once you decide.

Good luck!

Diane

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Feb 17, 2017 09:51PM GinaDexter1982 wrote:

My mom has IDC/DCIS. She's getting a mastectomy after two lumpectomies and I think she is considering just ignoring the chemo and rads and doing the hormone therapy and home remedies. Her oncologist told her that her chance of recurrence without chemo is at 25% while with chemo it would drop it to 10% because it was in such early stages but the tumor itself that had been removed with considered aggressive so I really don't know. She's 60 years old. I'm scared because I lost my dad last year and I don't want to lose my mom but it's her body and it's her decisions on what to do with it.

Dx 9/2016, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Chemotherapy Taxol (paclitaxel) Surgery Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary
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Feb 18, 2017 05:32AM - edited Feb 18, 2017 05:35AM by Davenport1

My first time around I was too scared not to do conventional treatment....Lumpectomy, hard chemo....tamoxifen....4 years later it was back MBC all bone mets, even with all that. Just after re-diagnosis, I came across a book called "Radical Remission, Surviving Cancer Against All Odds" by Kelly Turner. I have to say it has some crazy stories in it but radical remission does happen and there are people tracking it. Once my cancer reappeared I went on Ibrance and Letrozole but 16 months later when that quite working I decided to take a break and try some alternative treatment for the immune system at a clinic nearby involving medical green smoothies, PEMF, enzymatic exercise and hyperthermia. I did this program for 90 days. I wish I could say it was a cure for my cancer and though other amazing things happened in my body....lots of restorative things....It did not cure my cancer. I really believe if it were in my organs maybe and not my bones it might have worked. Just as bones take a long time to heal when broken I suspect that it would take a long time and lots of dedication now to get at that cancer in my bones. Not to mention all the chemo etc I have already had. I think it might make your cancer stronger when it's had to fight the chemo for a long period of time.

I post this info here not to discourage you but to let you know there are others out there not doing traditional treatment and it's being recorded(the book - and I believe there is website and even seminars if you are interested)....and to say that I think you are brave...it's scary out there outside the box....Just in my 4 months off (had to be off treatment for a month before starting the alternative)...it was scary.... even though I felt well during the alternative treatment....just toward the end of it my cancer kinda went haywire and grew again, darn! I'm a true believer that you really have to change your whole life to beat it....and that's not easy to do.... Even though you know it might save your life, but people apparently have done it...it does happen! We all have to make our own choices about all of this regardless of what others think we should be doing...it's such a personal thing...wishing you all well in your choices!

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Feb 18, 2017 06:28AM abigail48 wrote:

for many year I had a small cancer on my left hand on the web between my thumb and forfinger, I finally took it out with my fingetmails in 2008. in 2015 it returned. I think it I'd done conventional: surgery, infusions, radiation, It would have come back in that 7 year period

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Feb 18, 2017 07:52AM dtad wrote:

Hi all. Radgal could you please give me the information on the site about foregoing conventional treatment? Good luck to all.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 18, 2017 11:49AM Meow13 wrote:

GenaDexter1982, I was 53 when diagnosed with one ilc and one idc tumor both 1 cm, er+ and pr-. I had an oncodx number of 34 putting my risk close to your mother's at 23% but that was with tamoxifen alone. They claim it could have reduced to 10% risk if I did chemo. I did alot of research and I think the risk reduction was over stated. Also I did not do tamoxifen but anastrozole and exemestane instead which is more effective against my pr- status. I did a mastectomy with DIEP reconstruction. No radiation was required I did 4 years total of AI treatments and I am 5 years with no recurrence. I am glad I did not do the recommended chemo, I did have some permanent side effects from AI drugs dry eye and arthritis. My her2 status was negative and mitotic rate 1. I am happy with my decision. I hope this helps your Mom.

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Feb 22, 2017 10:28AM - edited Feb 22, 2017 10:32AM by mschooling0325

11/14/16 I had a Lumpectomy with IORT for ILC ER+ PR- HER- Stage II BC.

12/20/16 Octotype DX test results were 26. Recurrence was 17% with Anastrozole 12% with Chemo & Anastrozole.

I chose Anastrazole for 5 years.

Very interested in how this medication changes my body and lifestyle.

Thank you!

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Feb 22, 2017 11:48AM farmladync wrote:

I was diagnosed in March 2015 . A surgeon took out the tumor which was 2.5 centimeters , along with 1/2 of my breast and 8 lymph nodes. I have triple negative cancer. My lymph nodes were clear . After much prayer I decided not to do chemo and radiation after seeing all the side effects . Still have problems with my arm due to the incompetence of the surgeon . I will be 65 in June and live every day to the fullest , working part time too . I respect all decisions about treatments . It's a personal choice .


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Feb 22, 2017 08:52PM Meow13 wrote:

The most important treatment I believe is to remove the cancer tumors. With that an estimated 70% node negative are most likely cured. Any other post treatment is for risk reduction. It is very important to understand the risk and the risk of cancer treatment. There are standards for treatment given node status, size of tumor, and type and estrogen/her2 status. The oncologist make recommendations they should not demand. It is a very personal choice. There are risks with treatment, these drugs are not without their own set of risks.

I don't consider myself religious but I pray and pray for others affected by this disease. Take care of yourselves and trust your instincts.

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