I want to refuse chemo and radiation

resigned

Hi. I'm a massage therapist, and live a very natural healthy lifestyle. I know a lot about homeopathy. My cancer diagnosis was a complete shock. It's stage IIB/IIIA, that's still unclear. I am still learning but here's what i can tell you. I had 4 lymph nodes removed a few weeks ago my doctor says he got clear margins. I have multiple tumors in my right breast and I've agreed to have it removed. My oncologist wants me to have chemo before and after the mastectomy and radiation after. I have to do whats right for me. I am probably going to refuse chemo and radiation. I don't want that poison in my body, even though my oncologist and my family are pushing me. Has anyone else refused chemo and/or radiation?

ruthbru

With that diagnosis, refusing chemo and radiation would be a very, very risky thing to do. If the cancer has spread, it will come back, and you will then be on chemo or other unpleasant (to put it mildly) treatments for the rest of your life, with the cancer ultimately killing you in the end. Chemo and rads are NOT your enemy, they are like the Navy Seals working for you to kill the terrorist cancer cells, who will kill you FOR SURE if they get the chance!

Akevia

Hello natural healing

I completely understand where you are coming from. I was a vegan and living a healthy lifestyle, all natural and organic. I was diagnosis with IBC stage 3b, and I had a NP and was trying to fight it naturally but it wasn't working. I couldnt just have surgery because of the type if cancer and the size of my tumor. I did refuse it for a while but I was in to much pain. If they can get all the cancer out without you doing the other treatment, I can understand why you would refuse it. I would recommend tamoxifen if you're hormone positive I think that help my cancer from spreading. Goodluck!

Meow13

I refused chemo but I am taking exemestane. I didn't need radiation no lymph node involvement and did the mastectomy. My risk of reoccurance (based on taking tamoxifen) is 23%.

My onco didn't push too hard on the chemo. I am 3 years out with no sign of cancer.

Timbuktu

No one "wants" chemo.  Think of Steve Jobs.  He refused it and changed his mind too late.  Fruit juices did not save his life.

Lenn13ka

Hey Natural Healing?

Have you had an Oncotype done? That might give you more direction.  I am Stage 2a and the Oncotype and a second pathology read got me out of chemo even with a positive node. I did do radiation as I had a lumpectomy and LVI.  I am on tamoxifen and a natural protocol from my naturopath, who specializes in treating cancer patients. My MO at Dana Farber had no problem with me skipping chemo, in fact encouraged it.

ruthbru

Being Stage III is a whole different ball game from being Stage I.

pupmom

Nobody wants cancer, nobody wants chemo, nobody wants radiation, nobody wants mutilation. But we do whatever it takes to save our lives because the alternative is not OK. Cancer is a cell mutation. It cannot be destroyed by a good diet. It wants to kill you and it will if you don't fight back with all your might. Your life, your choice. I've been on this board for 3 years, and virtually everybody, most early stage, who refused standard treatment are dead. Those are the cold, hard facts.

Bow1965

I am a IIIA and I just finished chemo - my oncologist discussed stats with me today. Because I chose mascetomy, chemo, radiation and hormone therapy (some of these treatments still to come) I have significantly reduced my chances of dying from breast cancer (metastasis or otherwise) Like 40% over a ten year period. I'll take an 80% survival rate, but that's me. I am all for finding complementary treatments, but I'm not going to reject science - putting this poison in my body is not easy but worth it for me. Good luck whatever you choose, but be sure you have all of the info necessary to make wise decisions!

sandcastle

What Ever you do....Do it YOUR way......you know your Body......In Dec.....I will be 4 years....No Chemo....No Rads.....No Tamox......a Mastectomy and Complete Hysterectomy.......It is your Show Either way....Liz

pupmom

Sandcastle, what stage were you? You don't have that info in your signature line. How big was your tumor? Did you have any positive nodes or LVI? All these things factor into survival rates. 

DiveCat

I will reserve my...um, stronger....comments on homeopathy, but if chemo is recommended for you it is because there is concern that cancer cells have escaped the local area (as soon as you have invasive cancer, they have escaped) and you have a risk of distant recurrence. Rads may be recommended in your case due to margins, etc.  Your mastectomy can't remove all breast tissue. You have multiple tumours, which may mean added difficulty in getting clean margins.

Surgery does not reduce your risk of metastatic cancer when you have invasive breast cancer. Nor will "imprinted" water. If you end up with metastatic cancer, and want to extend your life and perhaps add some comfort from painful mets (but not cure) you won't have many options except chemo, anti-hormonals, radiation (to tackle bone mets, brain mets, etc). But at that point there the goal is in trying to slow its progression, not cure it. And you will be in treatment until you run out of options. Conventional treatments can't guarantee you won't get a recurrence, but you sure increase your statistical odds.

To be blunt, your healthy and natural lifestyle was not enough to prevent cancer (and it isn't for many women) so I certainly would not encourage relying on that alone to "cure" it either.

Yes, ultimately it is your choice, but I urge you to be cautious and very well informed before refusing recommended conventional treatments. 

sandcastle

The ONLY Factor in this for me was MY Choice......Liz

NancyHB

naturalhealing - Treatment is a personal decision.  Surgery is an important first step, especially given your diagnosis of invasive cancer and multiple tumors.  Before you make any decisions not to  pursue further treatment, please take time to educate yourself about the impact (both negative and positive) of chemo and radiation.  Get a second opinion.  Weigh pros and cons, risks and benefits.  And gather information.  You have what sounds like an aggressive cancer; you will need to be aggressive in your fight. 

It's wonderful of sandcastle to share her 4-year survival experience - but if I'm not mistaken she was diagnosed with a non-invasive Stage 0 cancer that, while requiring treatment, isn't even remotely similar to the cancer you are facing. 

Edited for typos

Racy

Naturalhealing, I understand your diagnosis is recent, and you probably don't know a lot a breast cancer and how treatment recommendations depend on the specific characteristics of each cancer. 

I'm sorry that, despite a healthy lifestyle, you are dealing with cancer. Unfortunately, it sounds like it is advanced. That is why treatments have been recommended to hopefully destroy it permanently.

You haven't said whether your cancer has features that would potentially respond to other forms of drug treatment: antihormonals for ER/PR + cancer or Herceptin for HER2+ cancer. These features, if present, would be stated in the pathology report. For a cancer the size of yours, these other drugs would normally be given in conjunction with chemo.

You should ask your oncologist what your survival odds are if you don't do the recommended treatments. There is a computer program that doctors use to calculate the benefits versus risks of treatments.

Only you can decide if you are prepared to accept the risk of not receiving treatment. It is likely to be a big risk. 

Please continue reading and asking questions on this site also, as part of your decision making.

Anonymous

Yorkiemom:

I hope that you will rethink your post about those of us who did not want chemo being dead, and modify or delete it.  It's not nice or supportive and that kind of comment is not at all what this forum is about.

Naturalhealing:

I hope you don't take the fact that this forum seems to be getting a little heated as the "norm" for this normally supportive and understanding group.  I understand your concerns.  What some of those who discourage you may not understand is: chemo and radiation can each have lifelong and devastating results of their own (including leukemia), that everyone doesn't want to live to try everything that modern medicine wants to experiment with, that cancer is in most of us and a lapse in our immune system is what causes it to get its grip on some of us. 

When I quit chemo after one treatment (and yes, I was only stage l, close to ll due to tumor size), I didn't look back.  I knew that, when I made the decision, I would never second guess it.  My docs did not give me an option.  You may find that, when you have all your pathology, you change your mind.  The stage and grade and receptors (PR, ER, Her2) have a LOT to do with how much chemo may or may not help you.   The "numbers/odds/risks/benefits" did not feel like something I wanted to gamble. You mentioned "clean margins," but you mentioned it in the same sentence with your lymph nodes. That isn't the same thing.  The "clean margin" is how much non-cancerous tissue there was around the tumor when removed (so they didn't miss any), but the lymph nodes being "clear" mean that the cancer hasn't traveled to/through them. Just make sure you listen to everything and make the decision for yourself, with the help of your docs. 

There are definitely others who were given the choice of chemo, others who refused.  I've used private messaging for some of my conversations with these people, because a lot of people, even the informed survivors on this board, seem to want to tell you how you should do it. 

Best to you.

dltnhm

sandcastle - 

From your earlier posts you write that you were stage 0 - DCIS - hardly comparable to someone with 2B/or 3A when it comes to making a decision about chemotherapy. 

And in you own words from 2 years ago ... You did not "have to do chemo or rads" and the CHOICE you made was for a hysterectomy. You wrote the following: 

sandcastleJersey ShoreJoined: Jun 2012Posts: 262

Jun 23, 2012 07:45AM sandcastle wrote:

Pam....that was my situation...I did NOT have to do Chemo or Rads...No Tomax.....I did have to do a total Hysterectomy....MY CHOICE...or I could of gone to the Gyno/onco every 4 months and have a piece of the endrometral linning sent for testing and WAIT.....of course I am Older....but they did see on my MRI a starting pattern of Invasive...I would of loved to do a lumpectomy.....but the truth is I am better with the route I have taken...Liz"

Yes this is her choice to make - but misinformation and comparing apples to oranges is not helpful. 

Beesie

naturalhealing, I understand that you don't want the poison of chemo and radiation in your body.  

The problem however is that you already have poison in your body - a much worse poison, the cancer.

Chemo and rads may be toxic treatments, but they need to be toxic to kill off the cancer.  With your diagnosis (which is very different than the diagnoses of many who are commenting) the risk your body - and life - faces from the cancer is hugely more than any risks you might face from these treatments.

nancy and dltnhm, thank you for pointing out that sandcastle's diagnosis was Stage 0.  Chemo is NEVER required for Stage 0 cancer, whatever the surgery.  And rads is required after a MX only when the margins are positive or extremely tiny.  So in fact sandcastle's treatment appears to be fully consistent with accepted treatment guidelines for her diagnosis.  That's quite different than what naturalhealing is asking about. (And as an aside, since sandcastle mentioned that she's 4 years out, it should be noted that the 5 year survival rate for Stage 0 DCIS is 100%, whatever the surgery or treatment.  The long-term survival rate is 98% - 99%.  It's a world apart from Stage IIB/IIIA.)

whatnow, I have been here longer than yorkiemom and in the context of the OP's post and diagnosis, I understand her point.  Technically "early stage" goes up to Stage IIIA.  From my observations, I wouldn't say that what she said is true for Stage 0 or Stage I or even Stage IIA; I can think of women who've refused standard treatment and who are still doing well, although I can also think of others who have not had such successful results.  However when you get to Stage IIB or IIIA, with a diagnosis like naturalhealing, then I agree completely with yorkiemom.  Sadly I can give you quite a few names to support her statement.

Meow13

You need to decide , chemo and radiation are dangerous to your health it is not a cure cancer can kill you after consideration you decide your treatment think of your onco as an advisor.

People say things like if you dont do chemo you dont have a chance or say chemo is not bad at all. Listen to all information but in the end it is your decision.

Very best wishes whatever you decide you can talk to us and get support.

Beesie

It is true that chemo and radiation are not a cure.  What that means is that there is no guarantee that everyone who has chemo and radiation will survive.  

This is very different, however, from the effect that chemo and radiation can have on the treatment of any one individual.  The fact is that we know from numerous studies that the survival rate is higher among those who have chemo and radiation. This is because, for some individuals, chemo and radiation is in fact a cure.  These are women whose natural progression of disease would have led to the development of mets, and their eventual death from breast cancer, but because they had chemo and/or radiation, they did not develop mets and instead survived long-term. 

This distinction between chemo and radiation not being a cure for everyone vs. these treatments possibly being curative for any one individual is hugely significant, particularly for someone struggling to make decisions about treatment.  Chemo and radiation won't cure everyone, but they might cure you.

As saying that "chemo and radiation are dangerous to your health", I have to disagree.  Do some women suffer serious long-term consequences from these treatments?  Yes, but the majority of women do not.   Do a significant percentage of women experience short term side effects?  Yes, but in most cases these side effects are temporary.  So are chemo and radiation dangerous to one's health?  For most women, the long-term answer is "no".  On the flip side, is an untreated (except for surgery) Stage IIB/IIIA breast cancer dangerous to one's health?  Based on survival rates for this type of diagnosis, for most women, the long-term answer would be "yes".

It's true that naturalhealing needs to listen to all the information and then make her own decision. What's important to me is that she has accurate information to make the best decision for her Stage IIB/IIIA diagnosis (with it's very different risks than a Stage 0 or Stage I diagnosis) and for her long-term health.  I'd also suggest that while of course it is up to each individual to make her own treatment decisions, in my way of thinking, a medical oncologist provides the most important input to that decision; he or she is the "expert opinion", not just an advisor. Most of us come to our breast cancer experience with no medical training and not much understanding of cancer and cancer treatments.  For a medical oncologist, understanding cancer and cancer treatments is their life's work.  

In the end, all of us here are just offering personal opinions based on our own experience; it's the medical oncologist's expertise that is of real value in making this decision.

Akevia

Nicely said whatnow!

resigned

Thanks for all the input it's helpful to hear from other women who have gone through this. I appreciate it. I didn't see the Alternative medicine forum when I posted here, I'll move over there I don't want to cause any trouble in a forum where you're all doing chemo. Sorry! 

Anonymous

Kaybee: I beg you not to refer to sandcastle's survival time as "meaningless."  I know that you did not mean it the way it reads, but I hope we can all edit our posts to see how they might read to others.  I'm not sure why this topic gets so many people so very angry.

 

All:

http://www.cancer.org/acs/groups/cid/documents/webcontent/002043-pdf.pdf

"No matter what type of cancer is treated, treatments such as radiation and chemotherapy can lead to a second cancer in the long run" (American Cancer Society).

I do not list this quote as an argument for or against treatments such as chemotherapy or radiation.  I list it instead so that posters understand that we are all faced with choices, and so the original poster knows that her concerns are valid.  She does not have all her facts yet, and may well decide to change her mind.  If, for example, her oncologist explains that chemo has a .1% chance of giving her a new cancer, but offers a 10% chance at preventing recurrence.  (THESE ARE COMPLETELY MADE-UP NUMBERS...I'm just saying that she may find the odds, in her own situation, to be better with chemo than without). When I found a new oncologist, after quitting chemo, she said that, IN MY SITUATION, Tamoxifen and Aromasin treatments were MUCH more important than chemo. Which doctor was right?  We'll never know.  So we must decide for ourselves. I know that, for example, I do not want heroic end-of-life acts taken on my behalf (when that time comes).  I don't want to be intubated.  I don't want to be force fed. I don't want that existence. 

What's important is that we not judge or condemn someone from making their own choices.  Humans kill themselves with alcohol and smoke every day.  And modern western medicine does not have all the answers. We once put leeches on our bodies because we thought "blood-letting" was an appropriate measure to heal illness.  We took pills during pregnancy that damaged the developing fetuses.My own daughter, after going vegan, grew 3" in her sophomore/junior years in college after having her growth possibly stunted by steroids to treat asthma during her youth.  Not the same thing as we're talking about in this forum, but something I never would have imagined would have happened. 

Even in the 9.5 years since my own diagnosis, things have changed considerably.  When I was diagnosed I was not given any choice about chemo--I was just told what it would be and when I'd start.  Today, with a similar diagnosis, many patients would be offered the option to undergo chemo or not (and I had not oncotyping). We are here to inform and support each other.  It is good to provide naturalhealing with information she may not have--all physicians aren't great at allowing patients to participate in their her own treatment decisions.  But we should also support her questions and decisions.  I've found this one topic to be a very sensitive one because it seems that many posters feel anyone who choses not to have these treatments to be "weak," unable to tough it out. That is not what drives us to say no to these options.  I was a single Mother with a business who survived as an orphan since I was 5, moving from home to home, drugs, abuse--and found a way to thrive as an adult.  I could take anything. But what my body told me when I took chemo, and what my mind knew from listening to the math, the odds, the statistics--was that it was not for me. Not at that time. Yes, I was stage I.  I would probably have decided differently if I was later stage, but where would that cut off be?  I don't know because that was not my journey.  So I don't second guess another woman's decision.  I do have an acquaintance who did die of leukemia, and his doctors said it was surely from his chemotherapy. He was VERY young (30s).  So, while docs give us the numbers and the statistics, we make our own decisions. 

Best to you naturalhealing--you'll have a tough few weeks or months ahead. Then--I hope your life opens up glorious new chapters for you.

Anonymous

Naturalhealing, the best advice anyone can give you is to learn as much as possible about the specific pathology of your cancer, and make your choices based on what is best for YOU.  

You can choose not to do the chemo before mastectomy, and based on the findings after all the tumors are tested, you can decide that you will or will not do chemo after surgery.  You can choose to do radiation, but not chemo, or chemo but not radiation.  YOU have the final say.  Your doctors can recommend a course of treatment, but they can't force that treatment on you.  

I had stage IIA, chose mastectomy and Tamoxifen which I took for 5 years, no chemo, no radiation, no herceptin.  Six and a half years later, I'm still here and feeling great.  The Tamoxifen did give me a different cancer, but that has been dealt with.  

Every current treatment option for breast cancer except surgery carries about a 1% chance of causing another cancer, and different treatments tend to cause different other cancers.  That means 99% of the women choosing that treatment don't get that cancer.  Chemo tends to raise your risk of leukemia, while Tamoxifen tends to raise the risk of endometrial cancer.  Most give you no more that a 2% or 3% absolute increase in survival.  Make the decision that lets you sleep at night, not the one that helps your doctor, or that makes other women on this site feel better. 

Meow13

Exactly what I've been trying to say PatMom I think some people didn't like my idea of the onco as an advisor. I was not dismissing their knowledge. But in essence that is what you are doing. You discover a serious issue in your body you go to a surgeon and onco to get all the data on the problem. Youhire themfor theirexpertadvise on a treatment plan. You can shop around to different doctors and together with your decision you can devise your treatment plan. I guess I am an engineerbut i also trust my gut instinct.

Meow13

Not sure why my post is screwed up. But I approached my cancer like a project I got expert advice and also took input from many sources from people who also had cancer similar to mine. I chose a path forward using my gut instinct and over 50 years of experience with my body. All this included my DIEP as well. Your mind can be your best friend or your worst enemy. The best of luck to you.

Mardibra

I find it interesting when some stage 0 or stage 1 ladies are so forceful in their negative comments about chemo to a stage 3 gal.  You have no idea what it is like to have to face the decision that chemo and rads are really the only approach (IMO) for our situation.  Like Yorkiemom, I have watched several stage 3'ers choose the natural route and ultimately lose their battle.  Would chemo and rads have helped them?  Not sure.  But, there was no choice for me...it was chemo and rads and tamoxifen or die. 

 Good luck with your decision.

Meow13

Naturalhealing,

You must remember I am stage 1 and have no sign of cancer after surgery the chemo suggested to me was based on the oncodx score of 34 reoccurrence. You really want to get rid of the cancer you might get second opinions and review all therapy options there are different chemo drugs. If you are near a large city with cancer options go get advice. I think my onco in Seattle has some more personal treatment options.

Dr Henry Kaplan is my doctor and every time I go for a check up I ask him if he has any new drugs or treatments for me. He looks at me and says you don't have cancer now, I guess there is nothing new in cancer prevention that I'm not already doing.

HomeMom

I was, like most people, diagnosed with stage 1-2 and was only going to have a lumpectomy and rads. Then when they did the lumpectomy I had a larger then anticipated tumor and it was in my lymph nodes. I am borderline 2b and 3a and there is no way I would have passed up the "big guns". You only live once and I trust my doctors. They are highly optimistic with this protocol and so am I.  I wouldn't be trying to convince a possible IIIa patient to forgo chemo if I things stayed the way they began. jmho

wrenn

i am triple neg and was cut off chemo after the first infusion due to complications. I regret having had that first dose and sometimes feel that it impeded my body's ability to heal. 9 months later i have debilitating neuropathy and digestive issues with extreme fatigue.  My take is not popular on this forum and it was an endless back and forth for me after reading of the bad things that would happen to me without chemo. Quality of life is very important to me.

BUT....I'm old. I may have had a different attitude if i was younger.

SailingWind

you need more info. Get second or third opinions on everything first.