Has anyone out there refused chemo?

jamiegww
jamiegww Member Posts: 384
edited March 2014 in Breast Cancer #1
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!
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Comments

  • jnl
    jnl Member Posts: 3,869 Member
    Welcome Jamie
    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
    aztec45 Member Posts: 757
    You Have a Right
    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
  • hybridroyalty
    hybridroyalty Member Posts: 1
    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.
  • New Flower
    New Flower Member Posts: 4,294

    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.

    You can
    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
    outdoorgirl Member Posts: 1,565
    Jamie
    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
    roseann4 Member Posts: 992 Member

    Jamie
    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!

    Hi Jamie,
    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
    Sam726 Member Posts: 233
    roseann4 said:

    Hi Jamie,
    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

    hello and welcome
    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
    lanie940 Member Posts: 490
    roseann4 said:

    Hi Jamie,
    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

    I agree with you, chemo
    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
    lanie940 Member Posts: 490
    Just to let you know,
    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
    crselby Member Posts: 441
    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
    susie09 Member Posts: 2,930
    crselby said:

    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.

    I just want to say that I am
    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
    Aliaslisa Member Posts: 16 Member
    susie09 said:

    I just want to say that I am
    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 ♠♣

    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
    marywest Member Posts: 132
    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

    thinking about your decision
    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
    Kat11 Member Posts: 1,931 Member
    marywest said:

    thinking about your decision
    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.

    Hi. welcome. I don't know
    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
    DebbyM Member Posts: 3,289 Member
    Kat11 said:

    Hi. welcome. I don't know
    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.

    Chemo is so different now
    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!
  • Angel_4_James
    Angel_4_James Member Posts: 73
    I will be praying......
    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
    survivorbc09 Member Posts: 4,374 Member

    I will be praying......
    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

    I just wish you good luck
    I just wish you good luck with whatever you decide to do, chemo or not.
  • Megan M
    Megan M Member Posts: 3,000
    aztec45 said:

    You Have a Right
    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

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

    Megan
  • e_hope
    e_hope Member Posts: 370
    None of us want chemo! But
    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
    ppurdin Member Posts: 1,181
    chemo
    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).