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Has anyone out there refused chemo?

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

I am new to this "nightmare" and I have been told I need chemo. I really really don't want chemo. I'm worried it will empty our savings account and I'm not sure I can handle feeling sick for that long. I also can't picture myself without hair. I get the impression nobody ever refuses chemo treatment. I would appreciate any advice. Thanks!

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Hi Jamie and welcome to the site noone wants to belong to. I didn't have chemo, so, I felt lucky about that. I had a lumpectomy with rads. I think we all do everything possible to rid our bodies of any cancer cells and to prolong our life and to stop any recurreance. Noone wants the cancer to come back and then say "what if I had only". You do what is best for you. I wish you the best of luck.

Leeza

aztec45's picture
aztec45
Posts: 757
Joined: Jul 2009

You have a right to refuse chemo if you wish. My onc has told me he has been told by a few women that they do not want to go through chemo. Just weigh everything out before you make a decision. I chose to fight with everything I have and with all the modern medicine known to man. But that is part of my nature. Keep in mind, there are agencies that can help you pay the bills. Your hair will grow back and there are medicines to reduce the side effects. We are also here to get you through it.

P

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Just wishing you good luck Jamie in whatever you decide to do.

Megan

hybridroyalty
Posts: 1
Joined: Dec 2009

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.

New Flower
Posts: 4060
Joined: Aug 2009

if you are sure that you do not need it.
It is really depends on stage and type of your tumor, lymph nodes involvement, your age and your personal responsibilities.
Hair will grow up, alternative treatments cost more than Chemo, and your family opinion does matter too.
Good luck with your decision.

outdoorgirl's picture
outdoorgirl
Posts: 1569
Joined: Apr 2009

do you have insurance?
Yes,treatment is expensive-I worried about that too. But like someone told me back then,you have to concentrate on getting better!Your hair will grow back. And yeah,it's a rough road-but like someone said there are good anti nausea meds,you just need to keep taking them. Chemo is doable-it's not fun,but you can get through it!you do have to weigh out your choices,it is up to you. For me two years ago,I just wanted to get better and if that's what I had to do to get better-I was going to do it!

roseann4
Posts: 994
Joined: Sep 2009

I wouldn't be basing my decision about chemo on the cost because you can make payment arrangements with the treatment center if necessary. You life is worth whatever it takes. However as others have said, chemo decisions are generally made based on the proven effectiveness chemo has had in destroying cancer cells which may grow and kill us sometime in the future. Depending on the type of cancer we have, different chemos may be used. Chemo has come a long way in recent years although no one wants to put their body throught it.

When I was first diagnosed, my husband was againt my having chemo. We had a huge fight about it because I was determined to make my decision based on science not on what people told him about chemo. When all the test results came in, it was decided that chemo would only improve my 10 year reoccurence rate by 3%, so I decided not to have chemo.

Please let us know more details about the type and stage of your cancer and someone who is or was in a similar situation will be able to offer more help.

PS: Concerning hair loss, the American Cancer Society offers free wigs if you can't afford one. Money wasn't an issue for me so I went online and picked out a great wig. Luckily, I never needed to order it but they have some beautiful and affordable wigs online. There is a women in my support group who had similar concerns and you wouldn't be able to tell she is wearing a wig. She sais it saves her so much time in the morning, she may wear it after her hair grows back.

Roseann

Sam726's picture
Sam726
Posts: 233
Joined: Sep 2009

Yes, I agree with many women here. It depends on what stage you are in and what type of cancer you have. I am HER2 positive and it was never a question for me. The side effects have be very very minimal..no nausea. Just a little constipation, which you can control and a few mouth sores, which is also controlable, and of course the hair loss..and it grows back. We all know you are scared but you can do it. Be strong..I just finished my 6th and final round on tuesday. Taxotere, carboplatin and Herceptin....you can do it girl. We have faith and you can always seek encouragement from us on here! Hope this helps.
Sam

lanie940's picture
lanie940
Posts: 492
Joined: Jul 2009

I agree with you, chemo would have only increased my odds by 2-3% so I refused it also. I based my decision on my Oncodx type report. My cancer was caught early, no lymph node involvement. Right now I'm dealing more with my Celiac disease! It has wreaked havoc with my bodily systems just as much as chemo possibly could be. I've been hospitalized twice 6 days for dehydration (nausea/vomiting/diarreah(may as well of had chemo,lol. Then this last time it was a severe electrolyte imbalance, and I am talking very severe! I could have died,seriously, this is what I was told,it was THAT BAD! My numbers were off the charts when I came to the ER last saturday. I'm home now, and hope I can maintain proper levels with suplements. I am still feeling some weakness, I need my strength back.

I don't know how much RADS zap strength, I had 30 RADs, 25 full rt breast and 5 boosts. I was VERY lucky not to ever burn, only dryness.

I will be starting Arimidex when I see my Medical Oncologist and ask him about what affects my Celiac and the suplements I'm taking for it.

Celiac can be a very serious disease, why I got it at age 60 is a mystery. they say surgery and or severy emotional stress can bring it to a head if it's been in your system but only mild. I thought I had IBS for about a year, it was Celiac working on me. It destroyes your vili in your SM bowel, you can't take nutrition in, you loose a lot of weight in most cases from diarreah which is what causes the potassium imballance wich can cause other electrolyte imballances. you are also prone to lymphoma of the sm bowel.

So far my plumbing organs and the others, liver,pancreas and gal bladder and kidneys are fine. They are still checking parathyroid. So we shall see.

this whole breast cancer and hernia operation and now Celiac has been a real adventure I didn't want to be taking!

lanie940's picture
lanie940
Posts: 492
Joined: Jul 2009

Just to let you know, Radiation isn't cheap either. I don't think it's as expensive as Chemo, but it runs pretty close. I think when it's all said and done mine will have cost about 50,000! I have good ins through my husband. There is help out there, so I'm sure if you contact the ACS they can direct you for help.

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

Dear, scared, sweet, Sister,
Welcome to The Nightmare. And Merry Christmas. When I was first diagnosed I had some of the same feelings and thoughts. Even before I had seen a surgeon to talk about treatments, I was worried about chemo, cost, etc. At least that is what I was expressing out loud. Inside I was ANGRY beyond expression. How could this happen to ME? The thing about this cancer is, often, it is diagnosed out of the blue, without your feeling ill, without your having any risk factors. So when you hear those incredibly dreaded words, "You've got breast cancer" you are caught off guard. A first human response could be anger. How could my body betray me like this? What did I do to deserve this? But there is also a tendency to deny what is being told to you. Heck, you feel OK, how could you be needing such extreme treatment, right?

Well, part of my denial was to think about how I couldn't afford this disease and its treatments. I'm trying to help a son go through college. And to talk about how I would go INSANE if I had to sit quietly while poison was dripped into my veins. Or if I had to lay still while machines zapped my flesh to crisps. But, but, there's always a but. I read on this discussion board how many women have gone through this and said "it's do-able". They are honest in their assessment, not overly simplifying things, like the doctors.

As it turned out, I didn't need chemo but did need radiation. I chose a shortened version that required grueling, torturous set-up (see my expressions page), but then it was over in 5 days. And the healing is easy.

The fear that rears up in the beginning reduces to a managible level once your treatment plan is in place, if you've made informed decisions. So does the anger. I hope neither fear, nor anger, nor denial interfere with your making informed, smart, best-for-you decisions. And that may include, as it did for some of the women who already replied to your post, saying no to chemo! Knowing your oncotype score may help! Just say it for the right reasons. Your family wants you around for a long long time. Other women have done it and gone on to have very happy, fruitful, plentiful lifes, without regrets.

Good luck with your decision, Jaime.

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

I just want to say that I am sorry that you are having difficulty in making your decision. I pray that you will do whatever necessary to fight bc. Chemo is doable. Good luck!

♠♣ Susie ♠♣

Aliaslisa's picture
Aliaslisa
Posts: 16
Joined: Aug 2009

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

marywest's picture
marywest
Posts: 135
Joined: Sep 2009

I am sure you are giving it a good thought on whether or not to do chemo. I think, if it were me deciding not to do chemo, I would do my utmost research on what I could eat, drink, what vitiamins tea etc in order to stay cancer free or kill the cancer cells if there are still some in your body. I have heard many stories of people with cancer going to mexico and doing a natural cure. I actualy met a guy whose mother and sister both went there and came back healed. I dont know what kind of a diet they were given. So maybe some books on what to do naturaly. I would really like for you to do what ever is necessary to stay cancer free. I did chemo, but my case was different, I had a breast tumor and lymph nodes with cancer so I did chemo immediatly. Mine was pretty advanced and did chemo for six months. Got through it! Do not let money stop you from choosing chemo. They have funds available, I would be more than happy to do some research to help you on that. Plus the hospital provides help. So please you can not put a price on your life and health. It is terrible to lose your hair, no doubt! It grows back and nice. That should not stand in your way, its very temporary and you can do it.
Again if your choice is not to do it becuase of the poisons in chemo then do more research and ask questions on this Breast cancer site and other cancer sites listed here. Some women have talked about books with great diets to be on that work. I do hate what is in chemo but on the other hand I am grateful to God for it, it killed my cancer and totaly destroyed the cancer in my lymph nodes. Take a deep breath, try as much as possible to make a clear dicision that is not based on side affects and looks. Will be waiting for your decision, what ever you choose will be the best. If you need more help on finances or what ever you need I would be more than happy to help you. As would others.

Kat11's picture
Kat11
Posts: 1931
Joined: May 2009

Hi. welcome. I don't know what you have heard about the treatment today. Its not at all like it was years ago. They have come a long way. I had chemo 16 rounds. Lost my hair also and about ready to do Rads. They have great meds out there to keep you from getting sick. For me it was doable. I was afraid if I did not do chemo and have all the follow ups that go with it, that I would die. For me I made the right decision. I don't have the greatest of Insurance. Don't let money make the decision for you. First you have to take care of yourself or whatever money you have saved, you won't be around to spend it. What ever decision you make, don't let it be about money. Do your homework on all counts. Good luck.

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Chemo is so different now than what it used to be. They have meds to help with the nausea and sickness. Please research your odds of survival or a recurrence before you decide against chemo. You want to live and if chemo is recommended, I would hope you would do it. Good luck!

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

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 ♥

Angel_4_James's picture
Angel_4_James
Posts: 73
Joined: Nov 2009

There is not really any advice I can add to all that you have already received. I did not want to do chemo either. In my mind I should not have to because the margins were clean and so was the lymphnode..........so why chemo??? Because my Her2 was positive, thats why. I prayed that God would give me His Peace if I was to go through with the Chemo. He gave it to me when we were sitting there talking to the Dr. So I will be starting it Jan. 14th. I will be praying that you too receive that same peace as you make your decision for what is best for you life.

God Bless,
Angel

survivorbc09
Posts: 4378
Joined: Jun 2009

I just wish you good luck with whatever you decide to do, chemo or not.

e_hope's picture
e_hope
Posts: 371
Joined: Sep 2009

None of us want chemo! But at the end of the day, you need to look at the big picture and decide to choose life. I was scared to death of chemo and losing my hair, but I did it. Yes, its a very hard and long journey. Filled with emotional roller coasters. Put a terrible strain on my marriage and a financial crunch. But we made it through and I look at it like this, you can't put a price on your health and life. There are programs out there to help with some of the financial aspects.

I had a double mastectomy with reconstruction, 8 chemo treatments, and 34 radiation treatments. I did everything my oncologist wanted because I want to do everything humanly possible to reduce the chance of it returning. I need to be around for a long time for my young kids.

You have a right to fear chemo and its side effects, but don't let it take over you. Be strong!

ppurdin's picture
ppurdin
Posts: 935
Joined: Jul 2009

Hi,I didn,t refuse chemo but I really thought about it.Then I relize that I needed to do what ever it took to fight this beast.The people that love me are counting on me.I will pray you make the right desicion.Love and Prayers(Pat).

MAJW
Posts: 2515
Joined: May 2009

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's picture
Sicilia929
Posts: 8
Joined: Sep 2009

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's picture
dmc_emmy
Posts: 549
Joined: May 2009

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
Posts: 61
Joined: Dec 2009

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
Posts: 1
Joined: Jan 2010

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
Posts: 2
Joined: Jan 2010

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
Posts: 34
Joined: Jan 2010

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.

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

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's picture
mimivac
Posts: 2147
Joined: Dec 2008

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.

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

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.

cindycflynn's picture
cindycflynn
Posts: 1133
Joined: Oct 2009

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
Posts: 36
Joined: Jun 2009

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.

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