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Why Im Not Doing Chemo

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  • dreaming
    dreaming Member Posts: 219
    edited December 2011
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    I just want to thank God that made possible that researchers found treatments, that I live in a country where I can be treated and that thanks to chemo I have lived 20 more years, and if I have a recurrence, that can happen, I would take anything my oncologists advises.

    I saw my kids finish high school, University, get married , became a grandmother. More than my dear 2 friends that wanted only palliative treatments. I respected their choice.

    I went into a career in cancer medicine, was able to volunteer, be an activist and an advocate.

    I am very happy with my choice of treatments..I respect everybody else. I face the same at work, patients that refuse treatments, travel to get non chemo medicine with the promise of cure.

    D, C. Invasive. R.Mastectomy. C.F.M.

  • Denise2730
    Denise2730 Member Posts: 320
    edited December 2011
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    Dreaming - how do you know you wouldn't still be here after 20 years even WITHOUT the chemo? I know we all choose what we feel is best for us but I'm always curious when people think the chemo really saved them when there is no proof of it. It's a crapshoot. Some people are going to survive after surgery with or without chemo and some aren't.

    Denise

  • Kaara
    Kaara Member Posts: 2,101
    edited December 2011
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    dreaming:  Thanks for sharing your positive experience.  You made a decision that you were comfortable with and I'm sure your friends did as well.  There are no guarantees in life.  You are one of the fortunate ones and I'm glad that you were able to see your children grow up.  If I were 30 years younger with this disease, my decisions might be totally different than they are today.

    At this stage of my life, it's all about quality, not quantity, and I will make whatever changes I need to make in diet, lifestyle, etc. to help achieve that.  In the end it's all about our choices and what we are comfortable with. 

  • 1Athena1
    1Athena1 Member Posts: 672
    edited December 2011
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    With breast cancer, no one can prove anything. The only thing we can each prove - if we had surgery - is that the visible tumor was excised. It's infinitely frustrating how little else is certain, regardless of the treatment. It is too much of a numbers game.

    In breast cancer, I had an illness with:

    --No known cause

    --No known cure

    --No known long term prognosis (in mycase).

    This argument about which treatments are better is so silly in light of how little we really know. To be sure, there is more evidence for some interventions than others - and that does need to be stated-- but at theend of the day all treatments for breast cancer -whether conventional or alternative- lie along a spectrum of uncertainty. The spectrum is a bit easier to define when women are studied as a group (ie: surgery superior to herbs, for example), but for the individual, the truth is that we must each cobble together the treatment plan we believe in, we can live with, and that goes according to our values.

    The most painful aspect of BC for me, at my stage, was not the cancer or even the thought of possible death but, rather, the need to tolerate ambiguity - this great load of uncertainty that was thrust upon me. For a late stager, ambiguity may equal a ray of hope, so we have to be careful of unanimously panning uncertainty as a bad thing. But for many early stagers, I would wager that the mind game is the worst. Late stagers have much weightier problems - but different ones.

    I once read a post somewhere on BCO in which a woman was complaining how, as she was being injected with radioactive dye just before surgery to take the cancer from her breast, a nurse or doctor tried to reassure her that it was not such a big deal. This woman recounted how indignant and horrified she was at that person's attitude. I shook my head when I read that. How I wish, while I was being injected, that I had been told something like "this is just a precautionary measure - no big deal." But no one said anything. They were silent. That spoke louder and in a more worrisome voice than anything else.

    Nobody likes ambiguity when their life is at stake - but everyone, IMO, has the right to view this reality. As we debate here, I doubt whether there is any reader who will form a conclusion based on what any one poster says here - and if she does WE have to remember that she is responsible for her decisions. We cannot take responsibility for others. People have every right to see this painful exchange, in which well meaning women are joined together in their fight for health but at odds over the prescription - just as we are afforded the right to political debate in a democracy. These are painful issues that many feel passionately about, but the common good is never served by censorship.

    I do not condone bogus, unscientific medicine, but we are free to say so. It disturbs me profoundly when I hear anyone say that such medicine shouldn't even be aired lest it scare some hypothetical (and apparently hopelessly idiotic) newbie. We women have to stop using fear as an excuse for things. We were all scared newbies once and we took responsibility and survived in one way or another. Our silent readers and first time vistors will do the same. They are adults. And if they DO get into that car with a total stranger, as it were - well, they probably didn't stop to ask questions, in which case they are not the people doing the reading and research here.

  • apple
    apple Member Posts: 1,466
    edited December 2011
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    "We were all scared newbies once and we took responsibility and survived in one way or another."

    or not

  • 1Athena1
    1Athena1 Member Posts: 672
    edited December 2011
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    Some die of the cancer - regardless of the treatment. Others do not die of the cancer - regardless of the treatment. By "survival" in that case, though, I meant going through the treatment decision-making process.

  • Lulu22
    Lulu22 Member Posts: 61
    edited December 2011
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    Birdlady54,

    While I am still in treatment I feel the evidence that chemo will turn out to have been a good choice for me is compelling.

    I was first advised that I should consider chemotherapy by my BS who felt she could get much better margins if we used neoadjuvant chemo to shrink the tumor which was encroaching on my skin. Her opinion was seconded by another BS, two MOs and a RO, all of whom pointed to statistically better survival rates among women with my stage and type of cancer who received chemotherapy. None told me chemo would guarantee long term survival or even that chemo would be effective for me, but all felt chemo would significantly improve my chances of beating the beast. None of the 5 work for a private clinic or bill me for chemo drugs. The statistics to which they referred me came from organizations such as the American Cancer Society and the NIH. 

    My tumor is a fast-growing grade 3 and was easily palpable from the time of diagnosis. It was misdiagnosed by a radiologist as a fibroadenoma months earlier, so by the time I had my MRI it measured at 4cm and 2 1/2 weeks later when I started neoadjuvant chemo the surgeon, MO and I all agreed it was closer to 6cm.

    I'm not someone to take a treatment on faith so I've kept a chart of the size of my tumor. Every 2 weeks on the eve of a new chemo I measure it best as I can. It is not a scientific measurement so it doesn't accurately measure absolute size, but as I use the same method of measurement  each time, I do believe it is a very accurate measure of relative size. According to my chart the tumor has gone from 6.2 cms. to 3.9 cms. over the course of 5 chemo treatments (10 weeks). It has also pulled away from the surface of the breast. I am certain this is not simply wishful thinking on my part, as I was well prepared to march into my MO's office to discuss a change in treatment had I not seen results. 

    My oncologist, who is overseeing an aggressive form of DD chemo in my case, advised against chemo in my MIL's case due to her age (70), stage (estimated at 1-2, LN status not yet known) and heart condition. A second opinion with another conventional MO yielded the same result.

    I am not against using diet, exercise, and other complementary therapies and lifestyle changes. I believe the best way to stay healthy and fight off side effects is to treat our bodies well, but I also feel the way to give myself every chance possible for long-term health is to play the odds and accept chemotherapy.

  • Ang7
    Ang7 Member Posts: 568
    edited December 2011
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    Well said Lulu22.

    I went with chemo as I was Her2+ and my Aunt was also Her2+ and explained to me that you do not want to mess around with that.  Where I live they do not give Herceptin without chemo.

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011
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    I was at the oncologist office for over 2 hours, maybe 3. I walked by a roomful of people sitting in easy chairs or recliners getting chemo. I had this sick feeling go through me. I wanted to walk out the exit door and go home.

    I liked the oncologist. She is smart, and sweet. Good combination. She looked through a few papers, a whole lot, and then said, you tell me your story. I started with my first lumpectomy in December 2007 to where I am now. She asked a few questions, but mostly listened.

    I said that I was reluctant to be there as I'm not the "standard" patient. i said that I'm cautious about drugs with strong side effects or suppress the immune system. I'm not aking anything without research it first. I gave her studies, and logically reason to why I am uncomfortable with chemo and tamoxifen.

    She showed me a graph chart. On this chart was a long green line if surgery alone was offered. 75% (the long green line was 75%) likely with surgery alone would free me of cancer. BUT...she noted that 24% possible of recurrence. If I did chemo, tamoxifen and herception then only 15% recurrence.

    I then said, ok, what if I am in the 75% green part of the graph? Maybe the chemo, tamoxifen, and hercepin is over treatment. Maybe I am one of the ones who don't need it. But, again, what if I am the person who does the chemo, tamoxifen and hercepin and I am in the 15% who has a recurrence? Did the chemo and other drugs cause another cancer or recurrence? If I am in the 15% group, I've a much more advance cancer. oh...I also thought...women who are in the green 75% group of it not recurring anyway who had chemo & etc are likely to believe that the chemo kept them from a recurrence when it didn't in fact. They would had been fine without it. So, how do we know who it really helps. We don't. It's a guessing game.

    She said that you want to minimize your risk factors by doing more to make sure you don't have a recurrence. I said, I'll be positive and try to be in the long gree 75% group.

    Of course, I know that's idealistic. Everyone wants to be in the 75% group who doesn't get a recurrence. (edit in...the graph did not take in consideration the her2+++ gene).

    The oncologist said most of the time surgery is enough for early stage cancer. According to her you just don't know who will and who will not have mets.

    I said I would consider hercepin if I saw that I needed it and as long as there are no side effects. She of course would like for me to take chemo with it. I said I want hercepin alone or I'm not doing it. She followed that with trying tamoxifen for one month with hercepin. I' said I might make the 1 month aggreement if there were no side effects...No side effects!  She agreed. One month of tamoxifen???? Hey, at least she compromised...that is if I decide on hercepin. So...I would take herception without chemo, and tamoxifen for one month.

    She wants to do a brain scan???? She said her2+++ sometimes go first to the brain. Thats scary. I'm also having a pet scan. I don't mind. It will give me peace of mind that it hasn't spread and it has mets... I'm going to Camelot Cancer Center where impositive went...not sure where I'll get the money, but I'll do it.

    She also said, she doesn't do MUGA for the heart because it gives off too much radiation. She does ultra sounds instead. I liked that she is conservative about radiating me.

    Last, she commended me for doing my home work and for the good thoughtful questions. We ended the meeting with a hug.

    There was a lot more said, but don't want to bore you with the details :) I'm glad I survived the appointment...no really, she was easy to talk to and I'm glad sh'e s not arrogant. From what I hear it's hard to find a good oncologist.

    One more thing I liked about her is that she brought up on her laptop, Internet, all my scans and mri's and we looked at them together, especially the recent ones. She too noted that most of my cancer was removed at the biopsy, but concerned in that it looked as if it had blood vessels going into the small tumor. What concerned her is that' I'm waiting 3 months to have the mastectomy. She said the nipple definately had to go. :(

  • impositive
    impositive Member Posts: 102
    edited December 2011
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    1Athena1, I have to say your post was very insightful and I i wish I could write like you do. Smile  I totally agree that no one is going to change the way each of us feels by coming here and simply stating that one method is better than the other.  We are all different.  I believe each of us, coming into this bc arena, already have a gut feeling or thought process that will take us in one direction or another, that is, IF we are true to ourselves.  No one here is going to sway us.  I also agree that fear is in the unknown.  I am bothered when someone says chemo is ineffective.  It is, for some, as in shrinking tumors and even might even resort to it someday...who knows...I will never take it off the table.  However, it also bothers me when someone refers to alternatives as "bogus, unscientific medicine."  "Science" is such a manipulated field...it isn't as black and white as we are all lead to believe.  It is theories and hypothesis that are put to the test.  These theories can be proven then disproven. 

    Ladies, It breaks my heart to think of those sitting in those chemo treatment rooms some of you have talked about.  I am currently taking an alternative treatment.  I have a picc line in my arm and am now taking my treatment at home everyday but when I took treatment at the clinic, we all sat in the common room (where the IVs are administered) and chatted, laughed, made friends and prayed together.  It was an experience that will always stay with me.  Attitude is everything and I have found that those in conventional medicine treat us with pity.  Some are kind and some are indifferent, some are even indignant.  I dont want to be pitied, I want to be empowered...I want to be healed.  I KNOW I will be.  That is what I love about alternative thinkers and you women on these boards...that'slife, evebarry, kaara, and all you others.  We need to have attitude and confidence...love that about you guys! 

  • impositive
    impositive Member Posts: 102
    edited December 2011
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    Eve, we were posting at the same time.  Sounds like you had a good visit.  I'm glad you found her.  Attitude....Wink
  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011
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    Impositive...your experience in the large room of people was awesome. The room I' saw was much differnt. I sat outside the chemo room while the nurse took my vitals. . I heard no talking. I looked in and people were quietly reading or whatever. It felt so sterile, cold and scary. I just didn't want to be there, although if I take the hercepin I know I will be sitting in one of those chairs.

     If ever there is a low grade chemo without harsh side effects maybe someday I too will reconsider.

    Right now, this is where I'm at. I'm not asking my chemo friends to approve or disapprove my choice. I'm merely responding to several people who've asked why I'm not doing chemo.

  • AmyIsStrong
    AmyIsStrong Member Posts: 426
    edited December 2011
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    I appreciate how intimidating a chemo treatment room can look, but PLEASE do not let that be any degree of a factor in your decision. I was in two different chemo rooms throughout my treatment and they were very different from one another. But it was the treatment that was the issue, not the room.



    And I disagree....attitude is not everything. Many people with very positive attitudes died anyway. I love a positive attitude, btw. But I think it is unrealistic to consider it 'everything,'

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2011
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    Eve, I'm really glad that you had a good meeting with the oncologist.  It's great that she's understanding of your concerns and willing to work with you on developing a treatment plan that's right for you. 

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011
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    Amy, just to note the chemo room didn't intimadate me...it was the idea of poison running through their veins that made me uncomfortable. I will probably be in one of those rooms if I get herceptin...probably will.

    I don't believe that anyone is saying attiutde is everything. Although it's proven that having a good mental positive attitude helps the body heal. 

  • jazz3000
    jazz3000 Member Posts: 109
    edited December 2011
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    evebarry- If there's a tumor with a blood feed you need it gone,  though I have to say it's not a pleasant thought. Sounds like you really had to hold your own but did a great job. The Onc heard and understood. Prayers work, as well as coming prepared. I woud think the brain scan would be a baseline she's looking for. It's like the heart. This is where we start and if things change we'll know what. I don't think she thinks you have a problem with your brain at the moment. Well I will watch closely an wait to hear what you have to say on the adventure you're about to under take. Big Hug for making it through the appointment and determining what it is you want to do. I'm proud of you girlfriend. Interesting thought regarding the 75% who undergo treatment and for what?

  • impositive
    impositive Member Posts: 102
    edited December 2011
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    Amy, While attitude might not mean life or death, IMO, it's the single most significant determining factor of success in many situations.  If you change your attitude, you change your perspective on things, on your decision making...on life and even on death.  With a change in attitude we can enjoy our lives, whether that means 1 year or 100 years.  Shifting your attitude can help and could just radically change your situation.  If someone asks, "How are you?" and you reply, "Lousy!" or "Awww, I'm ok" versus - "I'm good!  or even "I'm doing great", you just feel better and even if you're not so good, saying it helps.

    People think of an attitude as just being positive or negative but having attitude means many things like confident, friendly, warm, driven, determined, open-minded, powerful, etc. or any of its negative counterparts.

    Having a good attitude does change things.  That is real.  That is proven.

  • impositive
    impositive Member Posts: 102
    edited December 2011
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    Jazz, Where'd you come from...I like you!!Smile
  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited December 2011
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    evebarry,

    Sounds like she is working with you and working with the most helpful characteristics you have  as part of your dx to work with, along with checking out the hidden risk of brain mets, and offered the standard tx first to you so that you had that opportunity if you were a patient who did happen to want "to be talked into it".

    The observation that I can make about my own time on tamoxifen that I found interesting is that I saw how dense my breast tissue was by mammography post-surgery, and then started the tamoxifen, and by 3 months out the reduction in tissue density was amazing. But then, maybe I happened to be one of those for whom tamoxifen is very effective, who knows. I didn't find tamoxifen to be difficult other than dealing with the hot flashes. But since I live in Alaska and not Yuma, Arizona it was easy for me to just step outside for a couple of minutes anytime things got hot. I actually reduced my dose to a 10 mg and 1/2 of a 10 mg after the first year, before stopping altogether at a total of 1 3/4 yrs. I stopped because of controversy back in 2003 about taking tamoxifen with HER2 positivity for those with high AIB1, but there has been more research since then about that, and you can ask her to go over that with you.  (That is why I stopped taking tamoxifen in 2003, but that was then and this is now.)

    2003 article:

    http://www.ncbi.nlm.nih.gov/pubmed/12618500

    It sounds like you are still very much in touch with how you want things done.

    All the best,

    A.A.

  • [Deleted User]
    [Deleted User] Member Posts: 7
    edited December 2011
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    Evie, so glad that your appt went well and that you liked your onco. Very important factor in the whole process. I'm proud of you, your determination is inspiring. Will be here holding your hand dear one :)

  • apple
    apple Member Posts: 1,466
    edited December 2011
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    i liked my chemo room and I'm sure I'll visit it again regularly soon.  The chairs massaged and were heated.  People were certainly friendly and welcoming.. Volunteers would come in with snacks. plenty of blankets.  .. not that I in any way wish chemo on anyone.

  • Kaara
    Kaara Member Posts: 2,101
    edited December 2011
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    Eve- Thanks for sharing you experience with your onco....and I'm glad it was a better one than you were expecting.  Sometimes doctors can surprise us and actually behave like caring humans.  The fact that she was a woman is probably favorable, as I think they have a more nurturing demeanor.

    Now you have decisions to make, and I send you prayers that will guide you in the right direction, one that is compatible with your needs.

    lAthena1 - Good post, very thought provoking.

    Have a great day everyone! 

  • 1Athena1
    1Athena1 Member Posts: 672
    edited December 2011
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    Nancy - just wanted to chime in and say how sorry I am for the awful SEs you continue to have as a result of chemo. Also, missing you at BCO B&G - you should come over more often.

    Eve - I am glad you felt good with your onc visit. Not an easy thing. Of all specialities, oncology has to be one of the most thankless, for both doctor and patient. I stumbled onto a good one in my second try.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011
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    Just want to pop in and say just a couple of things.... Eve... Glad you found a doctor to collaborate with. I wish you and all the women beginning active treatment well. Regarding choosing a doctor and going about making treatment choices, respected Harvard doctor Jerome Groopman's recently published a book, YOUR MEDICAL MIND, which I think is a welcomed book that discusses this important issue that is being mentioned throughout this thread.





    Likewise, some of you might like to post your infusion room experiences on the thread I created in the chemo discussion board entitled INFUSION ROOM ETIQUETTE. I will be attending mine in three weeks and will once again report about my experience. On the thread I have learned in the last year that each center has its own unique feeling.





  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011
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    Alaska Angel, I agree, I was well aware she gave me the lesser standard treatment with the hopes if need be she would talk me into doing more. She saw that I wasn't about to budge before giving me what I wanted. Like I said, I made the concession to do taxomifen for one month if she allowed me to do the hecepin without chemo. But, if I had any reactions to the tamoxifen I would discontinue it for the month. I also said, I will only take it for a month...no longer. I have read that there are anti-fungals in tamoxifen. I know that if you use an anti-fungal for too long it no longer works for you. So, for that reason maybe it might be a benefit taking it for a short time. I did say to her that I read a study was done with results tamoxifen and hercepin doesn't always respond well to one another. She seem to know about the study but didn't answer that comment well enough for me.

    What is the AIB1? I read the link but found it a little over my head. I have another appointment with her Dec 19th. I'll ask her about it if I remember.

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011
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     voraciousreader, you had a cancer that didn't require chemo. Curious to why you are visiting chemo' rooms. Hopefully your cancer hasn't progressed or you have a new cancer requiring more treatment. Also...I appreciate all your research and your support to everyone here at bco. You are really a neat person.

    btw...mentioning the chemo room was not to downplay it...just shared my gut feeling to being next to it. If I go there for hercepin infusions, I won't be talking to anyone about their dx or my thoughts on chemo. Tha'ts bad form. I'll bring a good book or nap. Now, if I go to the place where impositive went, I'll party with the group.

    Thanks for all your support and prayers. I felt it.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011
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    Zometa! ;)

  • 1Athena1
    1Athena1 Member Posts: 672
    edited December 2011
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    .

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011
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    Zometa! ?????

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,858
    edited December 2011
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    Zometa is given by infusion as is Aredia and other things too, I imagine. So we also visit the infusion center to receive treatment. Caryn