Declined chemotherapy...

Hi, This is my first post.

When I was diagnosed with grade 3 breast cancer in 2010 I had a right mastectomy. I was very strongly advised to have chemotherapy.... HOWEVER ... the oncologists also said that even if I had chemo, the cancer would most likely come back in a couple of years anyway, so I declined it. I figured why go thought the hell of chemo when they reckon...very strongly...that the cancer will come back. I don't regret my decision, but I am wondering if there is anyone else out there who has refused chemo or any other treatment too.

I've felt very much on the outter because of my decision.

I'd like to hear your comments.

Cheers, Annie
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Comments

  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    First, welcome. But, I am
    First, welcome. But, I am truly sorry you have the need to be here. The people here have kept me sane through my journey. I hope you find it as welcoming, loving, and supportive as I have.

    I am very curious about why your docs think the cancer will be back within the next two years. Chances are their thoughts are based on statistics...you are not a statistic! It's either going to come back or it's not. And the doc does NOT know, he does not have a crystal ball. Honestly, I would be asking for a second opinion...or even looking for another doc.

    As for your decision, you have to do what is right for you. If in your heart, your gut, your mind this is best for you...then it's all good and try and be at peace with what you have chosen.

    Hugs,

    Linda
  • lynn1950
    lynn1950 Member Posts: 2,570
    Hi Annie. Do you mean grade
    Hi Annie. Do you mean grade 3, or stage 3? I am stage 3, it's been 4 years, and as far as I know, my cancer is not back. I am so sorry to hear that your oncologists said that the cancer would probably be back! I see it is two years later for you. I am so sorry that you've had to live with this prognosis. Have you considered a second opinion? My best to you.


    xoxoxox Lynn
  • AnnieTherese
    AnnieTherese Member Posts: 67
    lynn1950 said:

    Hi Annie. Do you mean grade
    Hi Annie. Do you mean grade 3, or stage 3? I am stage 3, it's been 4 years, and as far as I know, my cancer is not back. I am so sorry to hear that your oncologists said that the cancer would probably be back! I see it is two years later for you. I am so sorry that you've had to live with this prognosis. Have you considered a second opinion? My best to you.


    xoxoxox Lynn

    Grade...3....not stage 3.
    Thank you both for your replies.

    Actually it was... 3 oncologists ... who told me that, not just one !! They said it was grade 3 and an aggressive cancer and that's why I should have chemo. They said radiation and hormone therapy were not suitable in my case, but they almost INSISTED that I have chemo and were terribly shocked when I said no. My mother had BC for many years before she died and I always said I wouldn't have chemo if I got cancer, not that I dreamed in a thousand years that I would get it.

    I had the mastectomy and no cancer was found the the lymph nodes or any other part of my body, so presumably they got it all. When I told the first oncologist I wouldn't have chemo she got a lady professor in to "talk to me" she was very aggressive, stood in front of me with arms folded and basically said....well don't come back here in 2 yrs when the cancer has returned and expect us to cure it, because secondary cancer can't be cured it can only be treated.....I said, don't worry I won't be back !! She said to go home and think about my decision for a week and come back and let them know my final decision. The next week I went back...the first two oncologists weren't available, so I saw yet another one...the third...she was also almost insistant I have chemo. First I said .. ok, ok, I'll do it if you think it's that terribly important. On the way home I said to my husband, I just can't do this, so I phoned them and told them I wouldn't do it and that was that.....My GP was also very sure I needed chemo, but in the end they all said it was ultimately my decision...but basically meant....don't blame them when it comes back again.

    Most women seem to do as they are told by the oncologists...but I just can't. I'll never have it, even if it does come back. I've heard of a few other women who have chosen not to have it, but very few. My mother had treatment for years. She was officially diagnosed at 62 and died 4 yrs ago aged 90. But she did have chemo and hormone treatment almost all that time.

    Cheers, Annie
  • Mittensandmedwick
    Mittensandmedwick Member Posts: 85
    Chemo
    Hi Annie my name is Patricia, and I also declined chemo. I am stage 1 grade 2, er and or positive and her negative I had a lumpectomy and 3 lymphnodes removed 1 of them had a few cancer cells. I declined chemo because the risks out weighed the benefits by far. I will be starting 34 rads treatment on 8/14/12. I am totally fine with my decision I made after careful considerations of all the tests that have been done. I will keep you in my thoughts and prayers as we both go through this together. Hope to chat with you soon.


    Patricia
  • lynn1950
    lynn1950 Member Posts: 2,570
    I think I see where you're
    I think I see where you're coming from - having watched your mom battle cancer for so many years.

    But treatment has changed in the past 28 years! including the drugs that help you bounce back from the chemo and the drugs that help keep the more noxious chemo effects at bay. Of course the decision is yours to make.

    I'm sorry that you had such a bad experience with the professor person. I've had bad experiences with doctors myself. They don't necessarily know what is best for us, but many of them certainly think they do! Personally, I've had surgery, chemo, rads, and hormone therapy over the past 4 years. But I didn't just follow my oncologists' orders. I personally researched every little bit of advice. I questioned everything! No one is going to care about my body as much as I do. I'm sure that you feel the same way. I wish you peace with your decisions. xoxoxox Lynn
  • AnnieTherese
    AnnieTherese Member Posts: 67

    Chemo
    Hi Annie my name is Patricia, and I also declined chemo. I am stage 1 grade 2, er and or positive and her negative I had a lumpectomy and 3 lymphnodes removed 1 of them had a few cancer cells. I declined chemo because the risks out weighed the benefits by far. I will be starting 34 rads treatment on 8/14/12. I am totally fine with my decision I made after careful considerations of all the tests that have been done. I will keep you in my thoughts and prayers as we both go through this together. Hope to chat with you soon.


    Patricia

    Thanks Patricia....I think
    Thanks Patricia....I think if I was a younger woman with a family and mortgage and had to work, I may have agreed to chemo...but I'm 61, almost 60 at time of diagnosis. I discussed it with my family and husband, although it was ultimately my decision, but they all agreed with me, which made me feel better and gave me more confidence.

    Radiation and hormonetherapy was considered unsuitable for me, so only chemo was suggested.

    My husband said he'd rather have me for a year healthy than go through chemo and have me very sick maybe just to gain a couple of exta years. I'll never have chemo, even if it comes back....I have wonderful support from my ordinary doctor, my minister of religion and my family. I don't necessarily want to live to be 90...so dying doesn't frighten me, as long as it can be pain free, which my doctor has assurred me he will look after that side of things when/if the time comes.

    So for now, I'm living a normal life as I did basically before my diagnosis. I've started the process of breast reconstruction, which will take a couple of months. Sometimes I think a lot about cancer, sometimes I hardly think about it at all.

    Sometimes I hear of a woman being diagnosed with BC and think...oh how terrible, poor thing how sad...then it suddenly hits me...hey, I've had that !! :-)

    Good luck with you treatments, please let me know how it goes.

    Cheers, Annie
  • AnnieTherese
    AnnieTherese Member Posts: 67
    lynn1950 said:

    I think I see where you're
    I think I see where you're coming from - having watched your mom battle cancer for so many years.

    But treatment has changed in the past 28 years! including the drugs that help you bounce back from the chemo and the drugs that help keep the more noxious chemo effects at bay. Of course the decision is yours to make.

    I'm sorry that you had such a bad experience with the professor person. I've had bad experiences with doctors myself. They don't necessarily know what is best for us, but many of them certainly think they do! Personally, I've had surgery, chemo, rads, and hormone therapy over the past 4 years. But I didn't just follow my oncologists' orders. I personally researched every little bit of advice. I questioned everything! No one is going to care about my body as much as I do. I'm sure that you feel the same way. I wish you peace with your decisions. xoxoxox Lynn

    Hi Lyn,
    Yes I was told that

    Hi Lyn,

    Yes I was told that the chemo would be designed especially for me...but to be honest, I didn't trust them....the whole process just terrified me, and I couldn't go ahead with it. I've read that 80% of women who have chemo get cancer back again anyway...so I thought, why bother.

    There was a wonderful man here in Australia, a brain surgeon, his name was Professor Chris O'Brien. He was featured on tv documentaries and saved many lives. Eventually he got brain cancer and had all sorts of brain operations himself,and all sorts of treatments, but he died....I think the whole country was heartbroken. I know everyone is different, and we must all make our own choices. If I was younger...I'd most likely have tried chemo, but I have no responsibilities....except I have a wonderful husband, but he has agreed with all my decisions.

    Sometimes I'm very aware and I worry what has happened to me, but most of the time I just live my life as if it never happened. It's always at the back of the mind, I'm relatively new to all this, only 18 months since my diagnosis, but I think I'm doing pretty well.

    Thank you for caring....sounds like you've done pretty well too. :-)

    Cheers, Annie xx
  • carkris
    carkris Member Posts: 4,553 Member

    Hi Lyn,
    Yes I was told that

    Hi Lyn,

    Yes I was told that the chemo would be designed especially for me...but to be honest, I didn't trust them....the whole process just terrified me, and I couldn't go ahead with it. I've read that 80% of women who have chemo get cancer back again anyway...so I thought, why bother.

    There was a wonderful man here in Australia, a brain surgeon, his name was Professor Chris O'Brien. He was featured on tv documentaries and saved many lives. Eventually he got brain cancer and had all sorts of brain operations himself,and all sorts of treatments, but he died....I think the whole country was heartbroken. I know everyone is different, and we must all make our own choices. If I was younger...I'd most likely have tried chemo, but I have no responsibilities....except I have a wonderful husband, but he has agreed with all my decisions.

    Sometimes I'm very aware and I worry what has happened to me, but most of the time I just live my life as if it never happened. It's always at the back of the mind, I'm relatively new to all this, only 18 months since my diagnosis, but I think I'm doing pretty well.

    Thank you for caring....sounds like you've done pretty well too. :-)

    Cheers, Annie xx

    I did not decline chemo but
    I did not decline chemo but would never judge any one who did. I often wonder what else it would do to me. One thing about a cancer diagnosis is you need to take control where ever you can. If you have peace that is enough. I think your cancer type must be aggressivr, so it would show up sooner than later if it did. hat is why the 2 year comment. hope it never ever does.
  • MAJW
    MAJW Member Posts: 2,510 Member
    carkris said:

    I did not decline chemo but
    I did not decline chemo but would never judge any one who did. I often wonder what else it would do to me. One thing about a cancer diagnosis is you need to take control where ever you can. If you have peace that is enough. I think your cancer type must be aggressivr, so it would show up sooner than later if it did. hat is why the 2 year comment. hope it never ever does.

    What..
    What type of breast cancer did you have? Chemo is nothing like it was years ago...it's very doable...no one wants it ....But I wanted to live...

    Wishing you the best...
  • AnnieTherese
    AnnieTherese Member Posts: 67
    MAJW said:

    What..
    What type of breast cancer did you have? Chemo is nothing like it was years ago...it's very doable...no one wants it ....But I wanted to live...

    Wishing you the best...

    Well, I'll quote from the
    Well, I'll quote from the path report. I was told I had grade 3 cancer.
    The report says....talking about the right breast...

    There is an area of irregular density and architectural alteration corresponding tothe palpable area in the right breast and this is associated with calcifications i that region. These are quite extensive but not frankly malignant, although I would have to classify the calicifications as indeterminate.
    The ultrasound examination shows a significant abnormality at the 10o'clock position, 8cm from the nipplin the the right breast and measuring 18mm in max diameter. Immediately adjacent there is another slightly smaller lesion measuring 15mm and several other tiny adjacent nodules lie immediately medial to the main two lesions as described as above.
    A possible tiny lesion is also present lateral to the palpable area. These are all probably within the same quadrant of the breast.

    Then on another paper there is written.

    Conclusion: Core biopsy right breast 10 - 11 o'clock: MALIGNANT: Invasive ductal carcinoma estimated as moderately to poorly differentiated.

    That's about all I can see that would mean anything.....
  • MAJW
    MAJW Member Posts: 2,510 Member

    Well, I'll quote from the
    Well, I'll quote from the path report. I was told I had grade 3 cancer.
    The report says....talking about the right breast...

    There is an area of irregular density and architectural alteration corresponding tothe palpable area in the right breast and this is associated with calcifications i that region. These are quite extensive but not frankly malignant, although I would have to classify the calicifications as indeterminate.
    The ultrasound examination shows a significant abnormality at the 10o'clock position, 8cm from the nipplin the the right breast and measuring 18mm in max diameter. Immediately adjacent there is another slightly smaller lesion measuring 15mm and several other tiny adjacent nodules lie immediately medial to the main two lesions as described as above.
    A possible tiny lesion is also present lateral to the palpable area. These are all probably within the same quadrant of the breast.

    Then on another paper there is written.

    Conclusion: Core biopsy right breast 10 - 11 o'clock: MALIGNANT: Invasive ductal carcinoma estimated as moderately to poorly differentiated.

    That's about all I can see that would mean anything.....

    Type...
    The type you have is invasive ductal ...Thus your oncologist recommending chemo...Did they stage it? It goes from stage 0 to stage IV...

    Gain, wishing you the best
  • AnnieTherese
    AnnieTherese Member Posts: 67
    MAJW said:

    Type...
    The type you have is invasive ductal ...Thus your oncologist recommending chemo...Did they stage it? It goes from stage 0 to stage IV...

    Gain, wishing you the best

    No not that I can remember,
    No not that I can remember, just said that it was grade 3...unless there's something on the report that I don't understand.....
  • roseann4
    roseann4 Member Posts: 992 Member

    No not that I can remember,
    No not that I can remember, just said that it was grade 3...unless there's something on the report that I don't understand.....

    Hi Annie!
    I was told that the staging was based on size of tumor and whether the cancer was found in the lymph nodes or elsewhere in the body. Sounds like your cancer was stage 1 or 2. The grade is another issue. I was stage 1 and diagnosed at 58. I opted not to have chemo because I was told that in my case it would only improve my prognosis of recurrence by 3 percent. My oncoTypeDX score was 18. These are very personal and can be difficult decisions to make. There are never any guarantees. 31/2 years later I'm living each day with gratitude.

    Roseann
  • AnnieTherese
    AnnieTherese Member Posts: 67
    roseann4 said:

    Hi Annie!
    I was told that the staging was based on size of tumor and whether the cancer was found in the lymph nodes or elsewhere in the body. Sounds like your cancer was stage 1 or 2. The grade is another issue. I was stage 1 and diagnosed at 58. I opted not to have chemo because I was told that in my case it would only improve my prognosis of recurrence by 3 percent. My oncoTypeDX score was 18. These are very personal and can be difficult decisions to make. There are never any guarantees. 31/2 years later I'm living each day with gratitude.

    Roseann

    Thanks Roseann, They took 10
    Thanks Roseann, They took 10 lymph nodes from my armpit and none had cancer. So yeah, I guess maybe I was "stage" one or something, I don't remember anyone saying anything about that, but they may have. I don't understand what DX score is ??? There are so many things I don't understand that they talk about.


    I've just started the process of breast reconstruction. I have an expander in place that will slowly be filled with saline and eventually will be a silicone implant, possibly by Christmas. The first time they tried to put saline in, it didn't work. I was pretty upset as I was told the procedure would be easy. So I decided to give it another go a week later...well, second time it worked and they put 100 mil in, I go again next Monday for hopefully 150 mil. They say I'll need at least 600 mil or may even try for 700. I expect the final implant to go in just before or just after Christmas.

    Cheers, Annie :-)
  • SIROD
    SIROD Member Posts: 2,194 Member

    Hi Lyn,
    Yes I was told that

    Hi Lyn,

    Yes I was told that the chemo would be designed especially for me...but to be honest, I didn't trust them....the whole process just terrified me, and I couldn't go ahead with it. I've read that 80% of women who have chemo get cancer back again anyway...so I thought, why bother.

    There was a wonderful man here in Australia, a brain surgeon, his name was Professor Chris O'Brien. He was featured on tv documentaries and saved many lives. Eventually he got brain cancer and had all sorts of brain operations himself,and all sorts of treatments, but he died....I think the whole country was heartbroken. I know everyone is different, and we must all make our own choices. If I was younger...I'd most likely have tried chemo, but I have no responsibilities....except I have a wonderful husband, but he has agreed with all my decisions.

    Sometimes I'm very aware and I worry what has happened to me, but most of the time I just live my life as if it never happened. It's always at the back of the mind, I'm relatively new to all this, only 18 months since my diagnosis, but I think I'm doing pretty well.

    Thank you for caring....sounds like you've done pretty well too. :-)

    Cheers, Annie xx

    Breast Cancer has no Age Limit!
    Dear Annie,

    There is an old saying that the only certainty in life are death and taxes. Breast cancer doesn’t have any guarantees on whatever one does. We have high hopes that what is recommended will work. Sometimes it does and other times it doesn’t. No oncologist can predict with certainly that cancer will come back or not. They can go by the statistics that certain stages will more than likely but again, it remains in the area of probability. Stage IV can only be treated and that is why most oncologist want to give a person the best odds on not having the cancer return.

    Over my 18 years since diagnose I have read a lot but never read "that 80% of women who do chemotherapy have their cancer return". I don’t believe that statement at all. 70% of women more or less depending on where you read the stats never have their cancer return.

    Dr. Susan Love's Breast Book is a good basic book to learn about breast cancer. There is more to staging than node involvement or the grade. She has a web page you might want to read so you do understand some aspects of the disease.

    http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=1&SID=154

    Doing treatment or not doing them, is a personal decision that each woman makes.

    I wish you the best,

    Doris
  • Noel
    Noel Member Posts: 3,095 Member
    MAJW said:

    Type...
    The type you have is invasive ductal ...Thus your oncologist recommending chemo...Did they stage it? It goes from stage 0 to stage IV...

    Gain, wishing you the best

    I just want to welcome you
    I just want to welcome you first of all and secondly wish you good luck. My oncologist never recommended chemo as I had clean margins with my lumpectomy and my node was clean.

    I respect anyone's decision in their treatment. We all have to choose what is right for us and what we want.


    Good luck and sending hugs,


    Noel
  • missrenee
    missrenee Member Posts: 2,136 Member
    SIROD said:

    Breast Cancer has no Age Limit!
    Dear Annie,

    There is an old saying that the only certainty in life are death and taxes. Breast cancer doesn’t have any guarantees on whatever one does. We have high hopes that what is recommended will work. Sometimes it does and other times it doesn’t. No oncologist can predict with certainly that cancer will come back or not. They can go by the statistics that certain stages will more than likely but again, it remains in the area of probability. Stage IV can only be treated and that is why most oncologist want to give a person the best odds on not having the cancer return.

    Over my 18 years since diagnose I have read a lot but never read "that 80% of women who do chemotherapy have their cancer return". I don’t believe that statement at all. 70% of women more or less depending on where you read the stats never have their cancer return.

    Dr. Susan Love's Breast Book is a good basic book to learn about breast cancer. There is more to staging than node involvement or the grade. She has a web page you might want to read so you do understand some aspects of the disease.

    http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=1&SID=154

    Doing treatment or not doing them, is a personal decision that each woman makes.

    I wish you the best,

    Doris

    Hi Annie
    First of all, I clicked the wrong button--meant to do "reply" and clicked on "report as offensive". So sorry--mistake.

    Anyway, Annie, you sound as if you've made your decision and I respect that. The only thing I wonder about is if you're 100% sure--because you posted here giving your opinion and getting our comments and maybe looking for validation (which you certainly don't need from anyone). I think each and every one of us has to do what's right for us. Unfortunately, Annie, there is no crystal ball to give us the exact thing to do--boy do we wish there was!

    You will be in my thoughts and prayers for a good result in whatever you choose. We're here to support you no matter what.

    Take good care.

    Hugs, Renee
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    SIROD said:

    Breast Cancer has no Age Limit!
    Dear Annie,

    There is an old saying that the only certainty in life are death and taxes. Breast cancer doesn’t have any guarantees on whatever one does. We have high hopes that what is recommended will work. Sometimes it does and other times it doesn’t. No oncologist can predict with certainly that cancer will come back or not. They can go by the statistics that certain stages will more than likely but again, it remains in the area of probability. Stage IV can only be treated and that is why most oncologist want to give a person the best odds on not having the cancer return.

    Over my 18 years since diagnose I have read a lot but never read "that 80% of women who do chemotherapy have their cancer return". I don’t believe that statement at all. 70% of women more or less depending on where you read the stats never have their cancer return.

    Dr. Susan Love's Breast Book is a good basic book to learn about breast cancer. There is more to staging than node involvement or the grade. She has a web page you might want to read so you do understand some aspects of the disease.

    http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=1&SID=154

    Doing treatment or not doing them, is a personal decision that each woman makes.

    I wish you the best,

    Doris

    Thansk for sharing Doris!!
    Thanks for sharing Doris!! This sounds more realistic to me.
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member

    Well, I'll quote from the
    Well, I'll quote from the path report. I was told I had grade 3 cancer.
    The report says....talking about the right breast...

    There is an area of irregular density and architectural alteration corresponding tothe palpable area in the right breast and this is associated with calcifications i that region. These are quite extensive but not frankly malignant, although I would have to classify the calicifications as indeterminate.
    The ultrasound examination shows a significant abnormality at the 10o'clock position, 8cm from the nipplin the the right breast and measuring 18mm in max diameter. Immediately adjacent there is another slightly smaller lesion measuring 15mm and several other tiny adjacent nodules lie immediately medial to the main two lesions as described as above.
    A possible tiny lesion is also present lateral to the palpable area. These are all probably within the same quadrant of the breast.

    Then on another paper there is written.

    Conclusion: Core biopsy right breast 10 - 11 o'clock: MALIGNANT: Invasive ductal carcinoma estimated as moderately to poorly differentiated.

    That's about all I can see that would mean anything.....

    Same here!
    Hi Annie -- We have the same type!I too had those words in my report (and lymphvascular invasion). I am not doubting your Drs. because I am not sure about what elements they took into account. I get my treatments at Sloan in NY, and they never told me my cancer will come back in two years. The truth is, no one knows! You are an individual and so am I. and although we have the same cancers (grade 3, ductal carcinoma, poorly differentiated), we may not get the same results. I was dx at 32 so I needed to have chemo. I too had clean nodes, but this doesn't mean anything! I trusted my Doctors (Mount Sinai also gave me the same options for treatments, but I went with the best, Sloan). I did lumpectomy, radiation, egg harvesting (which exposed me to estrogen for 3 full weeks), chemo and now on tamoxifen for 5 years. My tumor was 99% estrogen and 89% progesterone so I have no choice but to take tamoxifen. And to be honest with you, I want to use all the tools I can against this cancer. But this was my personal decision. You need to make your won personal decision.

    Please know that no one knows what will happen. Doctors may know how to treat you but they sure don't know the future.

    Chemo was not a walk in the park but it was doable. Everyone responds to it differently, but I can tell you that it isn't close to what it used to be. I didn't throw up once!

    Did your Dr. mention if it was triple negative? Was there any level of estrogen? If there was, tamoxifen may be appropriate for you. It's a good drug!

    Please let us know how you're doing. We care!

    XO
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member

    Thanks Roseann, They took 10
    Thanks Roseann, They took 10 lymph nodes from my armpit and none had cancer. So yeah, I guess maybe I was "stage" one or something, I don't remember anyone saying anything about that, but they may have. I don't understand what DX score is ??? There are so many things I don't understand that they talk about.


    I've just started the process of breast reconstruction. I have an expander in place that will slowly be filled with saline and eventually will be a silicone implant, possibly by Christmas. The first time they tried to put saline in, it didn't work. I was pretty upset as I was told the procedure would be easy. So I decided to give it another go a week later...well, second time it worked and they put 100 mil in, I go again next Monday for hopefully 150 mil. They say I'll need at least 600 mil or may even try for 700. I expect the final implant to go in just before or just after Christmas.

    Cheers, Annie :-)

    Annie, I had Stage 3A breast
    Annie, I had Stage 3A breast cancer and did everything. The chemo was not wonderful, but I survived it and here I am 25 years later. I had a recurrence 3 years ago, but I am doing well. I am 59, but no where near ready to stop fighting.

    I respect your decision, but make sure that you have really thought it through. Chemo side effects are usually manageable these days.

    Also, make sure that you are not dealing with depression, which is common in cancer survivors and can impede our treatment.

    Good luck. You are in my prayers.