Has anyone out there refused chemo?

DianeBC

Aliaslisa said:

25 years ago Chemo was a lot rougher on your body. My mom was set up for four rounds. The gave her the first one, but doubled the amount without telling her. So, after the third round of Chemo, she said: "I'd rather die than go through that again. Just let me go." Well, she was dead about three days later. I have been very conscious of what she said, but I know that Chemo back in 1982 was very different than Cheno in 2009.

Keep hoping for anything good to happen like I do.
Hope for a better treatment/cure and things like that. Good things. And Good Luck. Lisa

Jamie, I didn't have chemo,
Jamie, I didn't have chemo, so, I didn't have to make a decision. If chemo will prolong your life and stop a recurrence, wouldn't you want to take it? Chemo is very doable. Look at all of the women on here that have and are going thru it. Good luck to you!

Hugs, Diane ♥

MAJW

Chemo or not.........
I wanted anything and everything they could throw at this beast! Chemo is very doable in this day and age........I was never sick one time, not even the first wave of nausea.....the anti nausea drugs work wonders.....I wanted no regrets down the road, if it came back......And I will say this.....sad as it is....I know a woman who refused chemo because she didn't want to lose her hair....sadly, she passed away DEC.1
IT's a personal decision and I wish you well in making it...

Sicilia929

I stopped it after infusion #1
I did NOT want chemo. I agreed to it because my sister had had breast cancer 16 years ago and she had chemo. I agreed because the people I love the most wanted me to do it. I should have listened to my own head and heart, BUT...as it turned out, my body helped make the decision. I had one infusion Oct. 2nd, 2009. Lost all my hair 17 days later. Went to my second infusion Oct. 23rd - the one the nurse had referred to as the "easy" one (her rationale...you had one, know what to expect, but you haven't acquired all the cumulative effects yet). Well, after the zofran and the steroid drips went in, the taxotere hit my body and I went into anaphylactic (sp) shock. This was a Friday. I saw the doctor on Monday. He asked me to give him a week to figure out something. I agreed, but my decision was pretty much made prior to seeing him. I saw him the next Tuesday and he proposed 'desensitizing' my body. I said no way. My body spoke and I listened. I finish radiation on the 11th. Then I have to make the tamoxifen decision. Only you can and should make this decision. I made the right one for me, of this I am certain. I didn't stop because I couldn't take it. You do what you have to do, but I turned it down because I believe it would do me far more harm than any good.
Good luck and God bless.

dmc_emmy

Jamie...
Everyone on this site has had a different reaction to their dx and their treatments, even those who have the same kind of bc. Each one of us are unique in how we manage medical intervention, just as we are unique in how we respond to anything that life deals out to us.

Unfortunately, only you can make the decision as to what to do, but as you are making the decision that seems right for you I would like to suggest that you think of the following: You cannot stop something that you have not started."

Granted, you began this journey, but that was not a choice that you made-that was something that thrust upon you (it is something that happened to all of us). To feel as though you have some control as to what happens tomorrow, the next day, or even a year from now, is based on what you decide today.

I cannot tell you what that decision should be, nor can anyone else here...that, my friend, is solely left for you to decide. Know, however, that whatever you decide you are, and will forever be, a warrior in my book because you are here with us...we are all warriors here.
dmc

sparky72156

Jamie......I understand your
Jamie......I understand your fear. I worked on an oncology unit for five and a half years, and I lost my husband to brain cancer four years ago. We all have different experiences that bring us to be the people that we are and I can say that it is very likely that I would refuse chemo. For me, that choice is as personal as religion. I could do radiation and I could do surgery and I could do chemos that don't have the horrific side effects. But the quality of my life is more important to me than the quality, so I believe that, if pushed, I would refuse it. While it is true that I have not gotten to that point so I could possibly change my mind, I do completely understand your hesitation. Please know that no, you are not the only one who feels this way. You must do what you feel is best for you.

Scoopdig

chemo
We are brainwashed into not questioning the medical profession. I started www.just-say-no-to-chemo.blogspot.com last night.

I have refused traditional toxic treatment, and instead of taking in toxins, I am building up immunity. [My personal opinion is that] anything that actually causes your hair to fall out cannot possibly be good. And we have all just accepted this as "normal". It is not normal and it is not acceptable. Read the cancertutor.com and other websites.
I am not an expert. I am learning about this on my own. But we MUST question and learn, otherwise, traditional medicine will kill us.

Note from Your CSN staff: This post was edited in order to remove medical advice.

sr2603

It is you call whether you
It is you call whether you refuse treatment or not. Just make sure you understand your patholgoy report/tumor type and what could possibly happen if you dont have chemo. If you are borderline or may onle benefit 1-2% then it may be wise to refuse treatment. On the other hand if you had an aggrressive invasive tumor type you may seriously wish to reconsider and have the treatment.

As for hair, thankfully it grows back in. Yes, its traumatic losing it, but no pain no gain. I lost my hair twice so far. The side effects of chemo are not great, I know from experience having had it 5 years ago and having been on it permanently this past 2 years, but if it clears up the cancer, it is worth a shot.

As for expense, dont worry about that! Speak to a social worker at the cancer center. Dont let a bad hair day or finances be the deciding factor. Its your life thats on the line here.

Good luck in your decision.

peacefulheart

I was diagnosed with stage 3A breast cancer in July. I was strongly encouraged by my oncologist, family anf friends to go through every treatment plan available. Every morning when I woke up, I felt my heart just break when I thought of going through chemo. After much thought and soul searching I decided against doing it. Will I regret it down the road? No. I have great peace of mind in my decision. My family and friends and even my oncologist have all accepted and respect my decision. I am going through radiation and hormone therapy. That along with the mastectomy was acceptable for me. It is a very personal decision to make and an extremely hard one. I wish you well.

mimivac

Are you still there, Jamie
Wow, a lot of strong opinions on this topic. Jamie, if you're still reading, please let us know what you've decided. You've certainly received lots of advice and heard different experiences. I had chemo. There wasn't a lot of hesistation for me since I had an extremely aggressive tumor that wouldn't respond to hormonal therapy or Herceptin. So, chemo and radiation were all I really had. You need to find out the facts before you decide. What is the pathology of your tumor? What stage are you? What are your recurrence risks with and without certain treatments? What about hormone receptors?

Unlike what some here have suggested, having or not having chemo is not as simple as deciding that it's toxic, and therefore unacceptable. What an uninformed opinion. Yeah it's toxic. But it's also toxic to cancer cells. It's a known killer of cancer, as is radiation. For me, what was unacceptable was dying of cancer in my 30's. I'm 14 months from diagnosis and feeling great. Did I love chemo? No, but I made it through. I now have pretty, short curly hair. I go to the gym every day. I take vacations. I relax with my husband, and I have a good life -- a life that was given to me through conventional cancer therapy. Yes, I also avidly read research on nutrition therapy and am very careful to eat "cancer fighting" foods, teas, and get plenty of exercise. I believe in alternative therapy, but not in lieu of other life-saving treatments. They can work together.

Of course, you have every right to refuse chemo. Sometimes the risk isn't worth the benefit. It's a decision to be made with your doctors in the light and with the facts, not with fear and magical thinking. I wish you luck on this journey. Hugs.

Mimi

Edited to add: my comments are not aimed at anyone who made an informed decision to refuse chemo, just at the attitude that chemo is bad because it makes your hair fall out and that's that.

jamiegww

peacefulheart said:

I was diagnosed with stage 3A breast cancer in July. I was strongly encouraged by my oncologist, family anf friends to go through every treatment plan available. Every morning when I woke up, I felt my heart just break when I thought of going through chemo. After much thought and soul searching I decided against doing it. Will I regret it down the road? No. I have great peace of mind in my decision. My family and friends and even my oncologist have all accepted and respect my decision. I am going through radiation and hormone therapy. That along with the mastectomy was acceptable for me. It is a very personal decision to make and an extremely hard one. I wish you well.

Still not sure about Chemo
Thank you for sharing your decision not to get chemo. I seem to change my mind hourly and it's driving me crazy. I too had stage 3A breast cancer and my oncologist said with cancer in 5 nodes that I should get chemo and radiation. I can't benefit from hormone therapy because I am triple negative. I don't feel like I need chemo but then I'm afraid of being wrong. I know everyone has to make the decision that's right for them but I don't have much confidence in my decision making abilities right now. I used to hate the thought of losing my hair but I'm close to pulling it out anyway so maybe I'll go ahead and give the chemo a try. My doctor says I can stop it at any time if it's too much to handle. I plan to make a decision by the end of next week. I don't understand why they don't have a vaccine for this yet. I wish you well also.

mimivac

jamiegww said:

Still not sure about Chemo
Thank you for sharing your decision not to get chemo. I seem to change my mind hourly and it's driving me crazy. I too had stage 3A breast cancer and my oncologist said with cancer in 5 nodes that I should get chemo and radiation. I can't benefit from hormone therapy because I am triple negative. I don't feel like I need chemo but then I'm afraid of being wrong. I know everyone has to make the decision that's right for them but I don't have much confidence in my decision making abilities right now. I used to hate the thought of losing my hair but I'm close to pulling it out anyway so maybe I'll go ahead and give the chemo a try. My doctor says I can stop it at any time if it's too much to handle. I plan to make a decision by the end of next week. I don't understand why they don't have a vaccine for this yet. I wish you well also.

OK, here is what I think
Jamie, I am triple negative, too, stage 2a, no nodes. You need chemo. You have every right to refuse it, but any oncologist will tell you that you need chemo. Get a few more medical opinions to round out your thinking. Talk to your doctors. Can you tell me what you're specifically afraid of with the chemo? I was afraid, too. Terrified in fact. But I made it through just fine. It's especially important that triple negatives have chemo b/c that is our entire arsenal. And chemo is particularly effective on us. My best to you with this.

cindycflynn

Jamie
I may be at the other end of the spectrum. For me, chemo was optional as it will only improve my chances by about 4%, but for me that was enough to make it worthwhile.

It sounds like you fear for your quality of life during chemo, and that fear may be exaggerated. I was also fearful at first, but after coming to these boards and seeing how many have made it through their chemo regimens and, like Mimi, have gone on to live a beautiful life beyond cancer and beyond the treatment for it. I don't want to minimize the difficulties some have experienced, either. It has caused a great deal of difficulty for some, and some have stopped the treatment because for them it just wasn't worth it.

My own experience hasn't been bad at all. I've just completed my 2nd of 4 treatments and have had minimal side effects, thankfully. I am very happy with my decision to go ahead with the chemo, but certainly wouldn't judge someone for making a different decision.

I just want to agree with Mimi that your decision should be an informed one. Getting as much information about your particular cancer, your prospects, the possible side effects and what can be done to minimize them, etc. should all be explored and included as part of your decision.

I know it's not an easy one, and I wish you only the best not only with your ultimate decision but with your health for the rest of your hopefully ridiculously long life.

Take care,
Cindy

debbie1162

I understand
I am a single parent with an autisic son. I did not think I could handle Chemo, being sick, losing my hair and the cost. BUT I HAD TO BE HERE FOR MY SONs. I have finished in June. I was sick about 10 days the whole 12 weeks and I did lose my hair. Now I have curly hair and have a payment plan with the hospital. So it was worth it. Trust yourself. But don't base your decision on money or hair. Good Luck with your decision.

breeze

hybridroyalty said:

I DID...
I know exactly how you feel because I went down that road a while ago. I ended up refusing chemo, radiation and tamoxifen. Your mind plays a huge role with your healing and recovery so you have to go with what you FEEL is best. If you still feel strongly against chemo, you may want to research Brenda Cobbs and Dr. Lorraine Day...two women who refused chemo. Sending you hugs.

hi there,
i can't wrapped my

hi there,

i can't wrapped my mind around doing radiation and tamoxifen. recently diagnosed. just wondering if u also refused chemo and radiation? and the results? wishing u health.

Double Whammy

breeze said:

hi there,
i can't wrapped my

hi there,

i can't wrapped my mind around doing radiation and tamoxifen. recently diagnosed. just wondering if u also refused chemo and radiation? and the results? wishing u health.

This is an old thread

started even before I was diagnosed (2010).  It would be interesting to get some feedback from anyone who actually refused chemotherapy and radiation and how they're doing today. 

The thing is, this breast cancer thing is a crap shoot.  The data on recurrence is for a population that was studied.  If, for example, you're told that amongst the people studied with the same type, stage,  grade, and genetic makeup  of breast cancer that you have, and  30% of the people studied had a recurrence without chemotherapy (that's what my ocotype test said), you don't know if you're going to find yourself amongst the 70% who did not recur, or the 30% of those who did.  There's simply no way of knowing for sure.  In my case, which is the only one I'm intimately familar with, chemotherapy was risk reducing, not life saving and it  shifted the number of recurrences from the 30% group to something like 12%.  Well, there's an 8% chance of getting breast cancer in the first place amongst the general population and  I figured since drew the card that put me in that 8%, chemo was a good idea.    I had chemotherapy and I had radiation and I take Tamoxifen (I have been told that hormone therapy is every bit, if not more, important than chemo).  I'm fine today.  I often wonder if I really "needed" chemotherapy for a number of reasons - mostly because I'm still here and nothing bad has happened.  If I had not done chemo and had recurred, then I know I would have always wondered and beaten myself up about not having the protocol that was recommended for ME and my specific breast cancer.   We are all different and we have to make the decisions that are best for each of us.  Just make an INFORMED decision.  Get a second opinion if you want, and get all the answers to the questions you have.

Best wishes,

Suzanne 

GlowMore

breeze said:

hi there,
i can't wrapped my

hi there,

i can't wrapped my mind around doing radiation and tamoxifen. recently diagnosed. just wondering if u also refused chemo and radiation? and the results? wishing u health.

Hello breeze......New to the Board***

Hi breeze...........you have posted on a thread that is years old..........  (see the posting dates at right top of each post?)   Looks like you just joined us and I can totally understand your question because I remember that I just wanted to catch a flight to Paris and forget about all 'that'.    But I did not of course, & after taking it slowly step by step and doing what was necessary....I am still here.  The question of whether you do chemo or radiation is always up to you.  It requires clear thinking (and for me lots of prayer)....sending hope and hugs.........  Glo