I want to refuse chemo and radiation

ruthbru

Again, with Stage I, you have more 'wiggle room' in making your decisions. For me at Stage IIA and no lymph node involvement, without doing standard of care for my situation (chemo, rads, anti-hormonals,) my chances of recurrence was 50%....just like flipping a coin. I wanted to live for a long, long time, and doing what has been shown to give me the best chance of doing so (standard of care because of the many brave women in scientifically analyzed  clinical trials). I would never 'go with my gut' in a life and death decision. I would always want the cold, hard evidence. I didn't experience any long term negative SEs from my treatments (in fact, I think I am more healthy than I was going in), but even if I would sometime in the future.....I've had 7 1/2 (so far) great years that I wouldn't have had if I had landed on the wrong side of that coin.

Find the facts, seriously look at them with your emotions taken out, understand the probable results of any decisions, and then of course, be able to say, 'this was the right decision for me' no matter what happens later.

tangandchris

Great advice here! I don't remember who said it, but the poster who mentioned that eating right, exercising daily didn't stop the cancer from happening....it probably won't heal it either. I agree and if you are higher stage than it is a big thing to consider ALL options. I can say that none of us wanted to do chemo and rads, but for me I knew that I wanted to be able to say I did everything I could.

Good luck and I am sorry you find yourself in this predicament. ((hugs))

Anonymous

Reading some of these responses, you'd think that everyone with a stage IIB or IIIA diagnosis who does chemo and radiation recover and are just fine.  That is not the reality.  Cancer is a nasty, sneaky, horrible disease and the only guarantee is that there are no guarantees.  This board is filled with posts from women who were stage II, even stage I at diagnosis and are diagnosed with stage IV a short time later, even when they did chemo and radiation.  

The list of names of those who died despite doing chemo before and/or after surgery and radiation is huge.

We each need to make the choices about the combination of treatments that will best address our particular pathology, age, location, life (children, responsibilities, the ability to have help in the home), comorbidities, and attitude.   Treatment choices should never be ONLY about the disease, they should be about what is best for the WHOLE patient.

RaiderGirl

Hey NaturalHealing  I hear your pain. you're world has been turned upside down and now you are being asked to do things to your body that is revolting to you. You are pissed . You want a clean body and clean environment. .

This is war and you have to arm yourself with knowledge. Knowledge is Power. 
 As you can see by my bio I was Stage 2, 1A, No lymph, margins clear. I had a lumpectomy sometimes called partial mastectomy. (Frankly its a big scar with a huge dent in the breast.)

 I consulted with two oncologist and both agreed that chemo would reduce the risk of recurrence by  3%. This fact was supported by a low OncotypeDX score of 12.  That reduction of 3% did not warrant the risks inherit with chemo. The final decision was up to me of course. .

According to studies and statistics the chances of recurrence within 5 years
with various treatment options are:

1)  Surgery only = 64%

2)  Surgery and radiation, no chemo, no hormone therapy = 34%

3)  Surgery, radiation, chemo, and 5 years of hormone therapy = 4%

4)  Surgery, radiation, NO chemo, and 5 years of hormone therapy  = 7%

My decision  was based on facts , statistics and medical recommendation. I choose option #4.

Here is another terrifying fact : if cancer does recur there is NO CURE.  Let that sink in a bit. NO CURE. NO CURE. NO CURE. 

A healthy , clean living lifestyle will help you heal, it will put this nasty BC diagnosis behind you. 

Clean living will not kill cancer. Ultimately it is you life and no one can force you either way .

Good luck sugar, whatever you decide.

 

DiveCat

PatMom,

I explicitly said in my own post conventional treatments aren't a guarantee against recurrence (my family members are a "good" example of how all the guns didn't prevent mets in any of them in the long run, but I am still grateful, for example, my mother did get an extra 8 years BEFORE her mets diagnosis and likely in no small part due to her chemo, anti-hormonals, etc..and now she again depends on conventional medication to try and slow progression and provide relief from painful bone mets) but at the very least they give you a chance that skipping chemo (where indicated) doesn't.  

Does everyone need to decide for themselves? Yes, absolutely, but OP should make her choice based on info about her own recurrence risk, based on her own cancer biology and pathology, & her potential risk reduction with treatments as well. 

Kicks

There is only one absolute in 'life' - no one will live forever.  It is how we choose to live our time 'here' that matters in the way that we feel is best for us that is important!  No one can tell anyone else that the choice they made is the ONLY way that ALL should.  WRONG!

Each of us has lived very different lives pre BC, our overall health was different at DX (and since), different types of BC have different prognosis, we enter into (or choose not to) TX based on what we individually believe is best for us.  It is great to give our experiences for others to read BUT no one can say what anyone else will experience or what is best for them personally.

Personally, I never gave it a second thought - I was going to do everything that modern medicine offered me.  That's just me - not everyone.  ME - I'm 5 yrs post IBC DX (and as far as I know today) still NED?  There is no 'No One Size Fits All'.

Meow13

reading through these comments have made me very upset. I do believe an oncologist is an advisor a very highly expert advisor in fact.I did go with my gut instinct and I'm not suggesting this person do the same I am just saying what I did I'm so upset I don't think I'm going to come back to this site any longer.

juneping

meow --- pls don't be upset....I usually just ignore the posts that I don't like 

resigned

I am very sorry I didn't familiarize myself more with the board before I posted. I don't want anyone to be upset (Meow13 and others). I just posted in a panic and posted to the wrong place. Apologies! I respect everyones decisions to do whats best for them. Thank you for all the information i have a lot more now to ask my doctor.

ruthbru

Wishing you the very best.

GrammyR

Naturalhealing- I can only tell you my story. I was a 11b ER pos. 1 pos node and 1.9 cm lesion. 8 rounds chemo ACT no RAds. Went 6 years- thought I beat it. Last year I had 're-occurrence under the collar bone. Had 6 weeks RADS. ( way easier than chemo)  I did not tolerate hormone blockers and stopped it after a year. I have long lasting effects from the Taxol- bad neuropathy . However all I can say is I am feeling better than I have in 7 years.  I was 58 when I was first diagnosed. I avoid hormones in diet but this is no absolute guarantee. With your stage - I would at least consider full mastectomy and maybe RADS.  Chemo is one of those things that is a personal decision- not right for everyone but there are more drug options now than in 2006 . Big hugs coming your way.

SarahClark

Hello naturalhealing,

In your case, we cannot assume that you will undergo chemo or not. You really rely on what the expert should tell you to save your life. We have only one life, you need to value it. My cousin's experience is somehow similar to yours, but.. she undergone a chemo and now she is recovering. 

Momine

Whatnot, your example with the difference in percentages is a good one. As others have pointed out, the average risk of developing a secondary cancer from the chemo is around 1%. You used a hypothetical 10% reduction in recurrence risk as an example of a situation where the chemo would be worth it, risk-wise. You are right, of course, but I just wanted to point out that in a 2B/3A situation, the risk reduction from chemo is most likely even greater than that.

Beesie, I completely agree that not all "early" stage cancers are made the same. Like you, I consider the boundary the line between 2A and 2B. 2B and up and you have to get very serious about treatment.

In general, I absolutely can't wrap my head around people with stage 0 and 1 cancers warmly advocating skipping chemo, cause "just look at me!" As already pointed out, they NEVER, that would be NEVER, give chemo for stage 0. So stage 0 patients did not "choose" to skip chemo, it was never offered to them in the first place. With stage 1, there can be good arguments for chemo in some cases, but the fact remains that survival stats, short and long term are very good even without any chemo.

Once you get into the 2B and up territory, things start looking quite a bit more dire. With every treatment known to mankind, my 3B cancer still has a 20% risk of recurrence in the next 7 years (that is including the "leg up" I get from already having survived 3 years). Without conventional treatment, my chances of being alive for 5 years would be less than 50%. 

Yes, you can do all the recommended treatment and still die. This is true. The sad and fundamental fact is that there is no cure. Nothing we currently know about, conventional or alternative will cure cancer. All we can hope to do is improve our odds of living on. With stage 2 and 3 cancers, chemo vastly improves those odds.

abigail48

came here when it was mentioned on alternative.  wrenn:  & all:  age does matter.  gary null said the other day that if your life expectancy is short statistically it makes no sense to endure invasive biopsy, toxic therapies of radiation, hormone blockers etc,  too many tests for old women he says

Momine

Abigail, my doc disagrees and has crunched the numbers to support his view. His opinion is that if you are in good shape, there is no reason to be under-treated and cutting your life short just because you are old.

I have posted this before, but maybe someone will find it informative:

Treating BC in the elderly

abigail48

gary's point of view that perhaps these tests & treatments for an elderly person don't lengthen but do shorten life

ruthbru

I think you have to look at the risk/benefit/quality of life issues in an elderly patient in at somewhat different light. At 53, doing chemo was definitely the right thing for me to do because statistics told me it would give me a much greater chance live for many more decades (and knew I would have time to bounce back from the effects of treatment). If I were in my late 70s (for example), I think I would be more concerned about having a good quality of life right at the moment & am pretty sure I would decline the harsher treatments. (When I was in treatment, I decided that 75 was my personal cut-off age for ever doing chemo again, and in retrospect that is still how I feel....so far, anyway).

Jujube43

I'm 71. I have Inflammatory breast cancer,  stage 3C. Other than having cancer I am very healthy. I went through neo adjuvent treatment and never missed even one chemo appointment. I was never admitted to the hospital. However two months after my final rads I had a local recurrence. I will take whatever my Dr recommends . If and when I find myself suffering from side effects that make my life unbearable, I'll stop and enter hospice. Just because I'm 71 does not mean I'm ready to die. 

ruthbru

Absolutely! (P.S. I don't consider 71 to 'elderly' AT ALL!!!!!)

abigail48

could gen banned on a less enlightened site, but age also depends somewhat on ethnicity.  some ethnic groups age faster & some more slower than others.  & of course, gender.  male humans unfortunately are less endurable than females

NinaW

Hi.

Things have been pretty crazy in my life lately, so I haven't had much time to check my usual internet haunts, this place being one of them, but I did want to offer my perspective, for whatever it might be worth to someone who's reading along.

My younger sister was diagnosed with breast cancer at Stage IV in January 2011. I was diagnosed with breast cancer at Stage 1 in January 2014. Last week, my father was diagnosed with prostate cancer. My sister was 45 at the time of her diagnosis. I was a few weeks from turning 50 at the time of mine. My father will be 88 in about two weeks. 

While my sister and I tested negative for BRCA, I think it's pretty clear that there's some kind of genetic link going on in our situation. I had a male cousin pass away two years ago from breast cancer. Even with the recent advancements being made in the exploration and understanding of genomes and genetic pathways, science is still a loooooong way off from understanding just how and why some of us appear to be more vulnerable to certain cancers. And while this is my father's first encounter with prostate cancer, I should note that he's a colon cancer survivor.  

Just a generation or two ago, people didn't discuss cancer all that much; when a family member died of cancer, it was generally because it had been diagnosed when the physical symptoms became so painful and/or obvious that they were prompted to discover what was going on, only to learn that they were past hope and that they needed to get their affairs in order. Frequently, people simply adopted a stiff upper lip about the thing and passed away without ever actually having been diagnosed, leaving the cause of their death a bit of a mystery.

My point is that for some of us, our genetic composition seems to leave the door wide open for cancer to walk in and make itself comfortable. In my father's case, he managed to beat back the colon cancer only to have an entirely different cancer show up a few decades later. I don't believe that breast cancer in particular is a "lifestyle" disease. I believe it's the result of a genetic weakness. Although I've seen more than enough of what's involved in a Stage IV diagnosis to know that it's an endless grind to stay one step ahead of clever, clever cancer, I don't think Western medicine has all the best answers to every question our disease asks - even though they're a good deal further along than they were even a decade or two ago. 

What you do with a cancer diagnosis is ultimately such a personal choice. How much is a certain treatment likely to help you? Where are you in life? Do you have small children or other family members who still depend on you for care? What is your risk assessment for recurrence? What kind of monitoring is available to you? What are your religious beliefs or the philosophies by which you live your life? 

If, after looking at the big picture and considering all of these elements, you decide to forego conventional Western medicine and have made peace with whatever consequences that might bring, then nobody on earth has the right to question your choice. The only concern I raise in the context of this thread is that no decision should be made in a panic or in ignorance. Gather all the facts for your unique situation and take them with you to a quiet place where you can really sit and consider them as a whole. Then go with whichever option feels right for you. This is big, big stuff, and while we're all here in a fantastic community of people who are facing similar big, big stuff, ultimately, our cancers have an occupancy of one. We each deserve the dignity of our choices, but I pray that each of us is making those choices only after learning as much as we possibly can about every aspect of our individual situations, because I don't want to give a single one of you up one minute before I absolutely have to.

maltomlin

I agree with NinaW

I was dx over 6 years ago with grade 3, and 3 of 24 nodes involved.............went through the same thought processes as the rest of you.....e.g. thought I was dying and planned my funeral etc etc...............was initially told I wouldn't need chemo......that changed.........I was scared stiff...... I didn't want it & looked at other options. No contest.

It wasn't easy, but it was worth it...........I kept my head down for 12 months and afterwards was able to start enjoying life..........although it did take 2 years before I was feeling anything like normal........

But here I am, over 6 years out and feeling great........working through my bucket list etc etc

It's such a hard road..........when you're first dx, you feel shell-shocked.........you google too much.........are depressed & can't see any way forward.......but believe me, the roads out are there.............

Take care

Momine

Nina W, I am an ex-Wchester girl myself Well said on all points.

Oh, and just checked your profile. You and I have a similar approach to getting through chemo, lol [hint: retail therapy].

Kicks

I have no idea who/what this 'Gary Nothing/Null' is but to adovacte that 'elderly' should not get appropriate medical care is promoting 'death squads'.  Assuming that because we have more years under our belt means that we cannot (and should not) have appropriate TX is absurd!  None of my Drs have said anything so ignorant.

I was never told that my TX plan was based on my age so couldn't survive TX but rather to do all possible to FIGHT the IBC monster.  I'm 68 and 5 yrs post DX IBC and still 'here' and NED.  Living and loving every day as a very active oman at 68.

'Age' has never given any quarantees of length of life or quality of life.  I Do know that with my DX, without TX I would not be alive today.    I  can assure anyone/everyone that I intend to live into my mid/late 90*s as active as one of my Gmothers and 3 of my G Gmothers did!

exbrnxgrl

Good post, Nina W

Momine, you lived in Westchester?  I didn't know that , or maybe I did and forgot this exbrnxgrl knows it well.

Kicks,

You can google Gary Null and I'll say nothing further on that subject. I agree that age shouldn't be a factor. As I edge closer to 60, I hope future proposed tx will be based on my health and the nature of my bc .

Caryn

juneping

age was a factor when I was speaking to my oncologist. If I was in my 60s, she would not recommend chemo. I don't get why age is not a factor. Everything is something needs to take into consideration. I am a person not a bug container waiting to be crushed. 

exbrnxgrl

I feel that your overall health and particular bc details should drive tx decisions. Age, in and of itself, shouldn't be a driving factor.

ruthbru

I was just thinking about my dad, who had surgery to repair an abdominal aneurysm when he was a healthy and active 80 years old. For years afterwards, he had yearly testing to make sure that the surgery had held....which was totally appropriate. As he neared his 90th year, he sadly descended into deep dementia. The testing became very scary and disorienting to him, and his physical health had become such that he could have not tolerated surgery even if a problem had been found. At the point, the monitoring was discontinued. That's what I meant about looking at the individual situation. He and my mom had both filled out a health directive years before, so we knew what sort of care he would, or would not, want under the circumstances, and tried to honor those wishes.

abigail48

yes.  & that's another indication of "age" genetics.  I would say that sometimes "appropriate" care is very inappropriate

Kicks

juneping - So glad that I wasn't subjected to your age bigoted Dr!   I may now be 68 (63 at DX) but I have never thought I was "a bug container waiting to be crushed".   Actually what is that supposed to mean anyway?  All of my Drs were there for me (as any competent Dr should be), not 'just writing me off' because of DX and age.