Why Im Not Doing Chemo
Comments
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AA - It kind of sounds like you believe that because you did not have Herceptin and did not have recurrance, you do not believe Her2+ BC is very aggressive??
For tumors greater than 1 cm, but less than 2 cm, Her2+, no nodes, without adjuvant treatment, recurrence rate is between 25% and 40%. The reason you did not have a recurrence is because you were were lucky and fell on the good side of the line - you were one of the 60 to 75% that did not recurr - probably because your BC had not spread yet.
For most of us, 25 - 40% risk of recurrance is too high, thus we choose these nasty treatments.
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hillck and orange1:
Thanks - I have posted before that were I a newbie today and HER2 positive, I would also choose to do trastuzumab -- although I might choose to do a short version of it. I have also posted openly that I am chemophobic. I am sorry I ever did chemotherapy, but then I'm just as sorry that professional oncology thus far has been not quite honest about making more effort to research things like the trials for ovarian ablation for those of us who genuinely have the right and need to know and who may also object to the massive overtreatment and the use of toxic levels of chemicals. If others find them worthwhile and they are universally available to cancer patients regardless of economic status, and there is genuine effort made to make sure they are not simply flushed down the toilet to add to the cancer rates on the planet, then I have no objection to anyone else using them. I realize my standards are high.
A.A.
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AA - ovarian ablation wouldn't have done me any good as I was post menopausal. Sure, surgery probably cured me too, but the risk of not taking the offered treatment is too high IMHO. I keep seeing women with mets years down the track - who knows if they would be in a better place had they been offered chemo/herceptin in the first place.0
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I can remember reading about a trial where they stopped it and gave all patients the treatment because of such wonderful results.
"Earlier in 2005, researchers involved in another Herceptin study reported that women with early-stage HER2 positive breast cancer did so much better if they received Herceptin plus chemotherapy before surgery that the trial was stopped and revised so that all participants could take advantage of the combined treatment."
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"Herceptin was approved in 1998 for HER2 positive women whose breast cancer has spread (metastasized). The drug doesn't work for everyone, but when it does, the results can be astounding; in some cases, breast tumors have disappeared. This led to trials of Herceptin in newly diagnosed women whose breast cancers are HER2 positive. Results from two such trials were presented at a 2005 ASCO session described by some as "transformational" and "practice-changing." According to breast cancer clinician and researcher Dr. Harold Burstein, at Boston's Dana Farber Cancer Institute, "It's the kind of thing where you look at the data...and you immediately say, Yes, that's obvious. People should get this."0
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Hillck... I think you nailed it when you say you, and I too, come from a less jaded place. I wholeheartedly agree. My medical oncologist presented all of the standard treatments to me and then the alternatives which included ovarian suppression. I sure wished that the trials were completed so I could have made a more informed decision. However, I believe I came to my decision with the best available information.
What I've learned over the years, especially with my husband's EXTREMELY rare genetic metabolic muscular dystrophy is that finding the best available care is messy at best. When my husband was diagnosed in his early 40's, he had already spent half his life trying to understand what was wrong with him. Considering the fact that his illness was first described in the medical literature when he was in his 20's AND by the time he was diagnosed there were fewer than 500 people in the world diagnosed with his disorder... It often seems like a miracle that he was diagnosed. Finding treatment was even more of a miracle. Dealing with an orphan illness if frustrating and frightening. There is NO standard of care when it comes to his illness. So researching his illness has led us on the path to alternative treatments that has brought us into direct contact with the most brilliant doctors, researchers and the NIH and FDA. Juxtaposing being treated for cancer seems so much less puzzling. I marvel at how much research is devoted to breast cancer. I marvel at all the choices of treatment. I often wish that my husband had as many choices as I had.
I truly think we are living in a watershed moment.. Not unlike the moment when anesthesia was discovered, as well as when Dr. Lister discovered antiseptics. Cancer research discoveries are expanding rapidly. Sadly,not rapidly enough for the 40,000 women who will die from it this year. But today there are many more breast cancer survivors than anyone could have imagined a decade ago.
I applaud the brave sisters who chose and still choose to participate in clinical trials that lead to discoveries. They are the heroes in this messy adventure. Without a doubt all of us would love to definitively know what all of our risks and benefits are for every treatment decision we make. But if there is one thing that I have learned from my husband and my adventure is that sometimes the map to where we are going seems elusive. But it never stops us. What keeps us going is knowing there IS research being conducted every day and there are doctors in the trenches trying to help all of us live another day.0 -
After hearing all of the horror stories of MO's and RO's I was pleasantly surprised today when I visited my RO for the first time. He was very personable and spent almost two hours going over all of the various types of radiation treatments, the possible SE's the advantages and disadvantages, etc. He asked all kind of questions, examined me thoroughly, and made sure I understood my options. The facility is state of the art and the equipment is the best and latest technology.
All that said, I'm still conflicted about doing radiation on such a small low grade bc with no node involvement. It's a huge committment of 5x a week for six weeks and seems overkill to me. I am almost incllined to forego rads, roll the dice, and if it returns, deal with it then. I'm already doing my complementary treatments and following a rigid diet and supplementation program. I was disappointed to learn that he didn't want me taking any antioxidants during this time that might interfear with the rads. I was thinking that the Meyer's cocktails would help me get through the worst of the rads with fewer SE's. I am going to have to do more research on this before I decide.
He gave me my oncotype score which is a 13, so thank goodness chemo is not a consideration, even though I would not have done it regardless. My goal was to be informed about the possibility and risk of spread, and now I know that is minimal.
I know these concerns of mine must seem small for those who are deep into the research of this disease, but remember, I'm one of the newbies trying to feel my way through this chaotic mess, and need all the info I can get in order to make the right decision. I'm five weeks out from surgery now and down to the wire!
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Kaara,
I was also told no anti-oxidants during rads and no more than 100% of the daily recommend intake of Vitamins A,C and E.
Caryn0 -
hillck,
Just as not all teachers or preachers are ethical, not all researchers or doctors are ethical. While there may be some legitimate reasons for delaying or not pursuing some trials, there are also often failures among professionals to uphold standards for research. Sometimes it really is as simple as the herd mentality governing the process. There can be the excuse that "the trial had such poor accrual of patients" that it wasn't accomplished, when the patients were willing but the patient's physicians themselves discouraged the patients from participating.
For all the bragging about successful trial results I've heard here and how proud we are of our researchers, etc., actually getting patients to sign up for trials is a lot more difficult than it is to brag about researchers and how great the results are. Especially the really crucial trials that require some patients to get placebos while others get treatment.
I do not make the assumption that we shouldn't openly express honest opinions where newbies can see them. They have intelligence, and will need it to get through the challenge. They are adults and seek our impressions. Our experiences and opinions differ. If we want newbies to have real information then it makes no sense to me to pretend as if the fact that people are doctors or lawyers or anything else makes them more virtuous and dedicated because of their profession than the average person in any other job. It just ain't so. On the one hand I keep hearing here how we all have to be careful about our choice of physicians and treatments, and on the other I keep hearing how important it is for adult newbies not to be given any negative impressions at all about them. I lean toward protecting them by making them a little more wary than I was as a newbie.
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evebarry - I had every side effect listed except for bleeding and fertility changes (I had a hyster in 97). It was horrible, and yes, as some people say, I may be alive because of it, but I honestly do not think I could ever to it again.
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Kaara; I think you've done due diligence. I'm one of those who did do chemo and rads without major issues (a little neuropathy, that's it), but I'm Stage 3, Grade 3, her 2 positive, er/pr positive. My experience was fairly positive, on the whole, but I absolutely understand your reluctance about possibly overtreating an early stage bc. I've learned a lot by reading this thread - thank you all for your contributions.
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My original post explicitly said I wasn't in the debate between chemo vs. alternative. Because I have been questioned to why I refuse chemo, I posted my decision about chemo here to explain it so women who continue asking me why not or why I should do chemo, will know why I made the decision not to do chemo. Rather than re-explain or continue explain my choice of treatment, I can send them to this thread. Also, I wanted to make it known to those who have accused me being on alternative is the reason for my cancer recurrences .... this is not true. My original post clearly explains so far I haven't been on alternative medicine, and explains my journey. And because of insults do to my personal choices, and questioning my intelligence, I posted this thread, Why I chose not to do chemo. I mean no harm...although I have found much of the conversation challenging and helpful.
Most of what I have done so far is to learn why my body is making cancer cells, and cancer prevention...plus researching alternative approaches. Nothing more at this point.
Also...in regard to the thenewme comments... my personal experiences doctors pretty much prescribed treatments or meds in the past without considering my past medical history, or informing me of side effects. I can't number the times this has happened to me. I don't think I'm the only one here who feels this way. This is my opinion, nothing personal or meant to insult. I posted the side effects of chemo because I felt it should be written here. It's not an insult...knowing the side effect is just one of many reasons I've chosen not to do it. With my medical history, a few of the chemo side effects would be detrimental to my overall health. My oncologist when suggesting chemo had no knowledge of my past history. After learning a little more about me, she agreed Herceptin without chemo. I have learned through experience it is up to me to stand up for myself, and I am my best advocate.
Most what is posted here is way above my head and most newbies would not be able to decipher most of the medical lingo. Most likely unless newbies have a medical dictionary or medical education most of what is said here would be Greek to them. I did my best to read through all the recent post.
What I would like to see happen here is alternative treatments to chemo....especially for those of us who are looking for alternative treatments to chemo.
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AA I admire evebarry for having the intelligence and fortitude to continue to explore her options and to share her exploration here in behalf of others with complicating concurrent disease factors in similar situations, where the cookie cutter approach of standard therapy is less applicable. She is doing so despite the barrage of people posting their impressions (including me).
AA...get's me. Although, really I am not offended or upset by the different perspectives. I admire all of your research, intelligence and grateful for your concern.
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Eve....I don't think the controversy is as much about alternative treatments as it is about the difficulty you've had in finding a doctor and getting the appropriate care based on your history. And IMHO, I think AA also lacked a doctor, unlike mine, who satisfactorily explained ALL available treatments, including alternative treatments (which I am doing) and their side effects to her. I think she regrets that she didn't make an informed choice about her treatment and now remains skeptical of the field of medicine. DANGEROUSLY so. Believe me, Eve. She DOES NOT GET YOU. None of us get one another! For goodness sakes, we ONLY know one another as much as this cyber world allows us to know one another and that ain't much!
You state that it wasn't until after you discussed in detail your history that your doctor changed her treatment recommendation. What is THAT all about? Did she not have in front of her your medical history which is imperative to make a treatment recommendation? I applaud you for mentioning to her your history and advocating for yourself. However, I have CONCERN for you and your care because EVERY doctor should be knowledgeable about a patient's history BEFORE making a treatment recommendation.
And, I wonder now, if you've had your initial question answered. Why IS your body inclined to make so many cancers in such a short length of time? And, have you done enough so you never have to revisit making these types of decisions again?
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Granuaile: Thank you...I understand your need for more aggressive treatment and I'm glad that you were able to get through it without too much difficulty. After a sleepless night of meditation and prayer about my decision on rads, I am going to discuss it further with my BS at my appointment on Monday. If he can't give me the go ahead to continue my supplementation program through radiation treatments, I am going to forego rads entirely. It just doesn't make sense to me that I should give up three month's of committment to a healthy lifestyle and diet only to fall back to zero while taking on a treatment that in my mind is at best questionable as to it's ability to prevent recurrance. If my choices are glass half empty (25% chance of recurrance without) or glass half full (75% chance of non recurrance without) I tend to go with the glass half full....unless I can counterbalance that with some healthy choices that up those odds even more.
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Kaara....The best person to answer your questions is the Radiation Oncologist NOT the breast surgeon. You can always get a second opinion from another Radiation Oncologist as well.
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eve.. you are fortunately early stage. I personally would move on and be confident that you've made the decision.. focus on the 'me' that is not cancer and not the me me me that is... enjoy yourself and congratulations.
as long as you are under a doc's watchful eye you could or should be fine.
peace and love, apple / Mary Magdalen (really)
Diagnosis: 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+0 -
voraciousreader: I would agree with you...except....the RO already told me...no antioxidants, and I don't agree with his theory because I've read otherwise. His comment was "we don't know for sure, so we don't want to take chances"....follow the "guidelines". These doctors don't deviate from their guidelines...they can't because they have to protect their licenses. This is probably a decision I will have to make without their consult.
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Kaara...get a second opinion from another Radiation Oncologist. And that's not true that they can't deviate from their guidelines because they need to protect their licenses. Not true at all. There are guidelines and then there is gross negligence. Big difference. They will have you sign a waiver. I did...when I chose NOT to do what was advised. Annoyed me that I was signing the waiver but I did and continued to be treated by the doctor (for an unrelated illness).
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Kaara,
How are you giving up your commitment to a healthy lifestyle during rads? I was told no supplemental anti-oxidants and no taking supplements, specifically vitamins, that put me over 100% of the daily A,C and E vitamins. I still ate healthy and exercised normally. I was encouraged to maintain my healthy habits!
Caryn0 -
"And IMHO, I think AA also lacked a doctor, unlike mine, who satisfactorily explained ALL available treatments, including alternative treatments (which I am doing) and their side effects to her. I think she regrets that she didn't make an informed choice about her treatment and now remains skeptical of the field of medicine."
I wouldn't argue with that at all, VR. I haven't pretended otherwise.
My PCP is one of the hardest-working, intelligent, most conscientious people I've ever met. He is also one of the doctors I repeatedly told at various visits that I had dyspareunia, and never, ever once put it in the record.
He also is the one I intelligently and responsibly took the printed information to that detailed the conflict involved for HER2 positives who were prescribed tamoxifen. He discussed it with my onc (long distance), and then got back to me. Instead of treating me intelligently for having brought the information in, his response was, "You are probably menopausal now anyway so we will put you on an AI." He gave no acknowledgement or explanation as to why the onc (and thus my PCP) had me on the tamoxifen in the first place without ever discussing with me the conflict involved so that I had a say in whether to take it or not.
This is a guy that I respect tremendously for all his hard work and abilities. It is just SO deeply ingrained in their experience with patients that we aren't supposed to know anything or make our own choices. It is SO ingrained in practitioners like him AND the male onc that when a female like me complains about a very real problem like dyspareunia, it will never be entered in the written record, and they will never, ever ask about it at the follow up visit. When I saw tne NP some time later and specifically complained about it, it was written in her clinic notes that I requested.
Dyspareunia is major issue, not a minor one that patients should learn about AFTER completing treatment. It is quite obvious that female patients have been undergoing chemotherapy treatments for decades without straightforward acknowledgement about this problem by the oncology professionals. Not just by MY providers. They have also shamefully minimized and failed to acknowledge truthfully and openly the problem of chemobrain for decades. They have failed for both to do the research on these problems in any kind of compassionate or timely way. We can make excuses for them. We can patronize them and be "understanding" about their failure to acknowledge or address those problems adequately while they were charging ahead with the treatments that save lives (but at the cost of free choice by those who were left uninformed).
You are right. The difference is that people like me have made a difference by the time you saw your doctors.
A.A.
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VR: I would be happy to sign a waiver, but if I am being given rads and continue to take my antioxidants, I must believe that they are not going to interfere with the killing of the cancer cells, or I am wasting valuable time and money because the treatment will be rendered ineffective.
My intuition tells me that if an antioxidant is strong enough to protect a good cell, then it is also strong enough to kill off a bad cell, and would not work to protect it. That is not it's purpose.
The reason I am going to speak to my BS is to get his support for my decision. He is a college of my RO and they communicate frequently. I need his influence to help me get over this objection to taking the antioxidants.
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VR...You are someone I do appreciate here on bco and a great advocate for those who are dx with mucinous cancer. You are one of my favorites! It is good you have an oncologist that checked out your history before treating you. I've been around for a long time, and unfortunately this has not been my experience. When I went in a few years ago for mouth sores, I was treated with antibiotics and the sores worsen, and got so bad I couldn't eat or barely talk. I was sent to an ENT. I said I to the ENT, I thought I had thrust due to a possible oral yeast infection caused by a couple rounds of antibiotics. Without asking questions or even looking in my mouth she dx me with acid reflux. She said, did you ever have chemo, or aids. I said no. Then she said, you don't have thrust. She then said, you don't have a medical degree so don't tell me what you have. She briefly looked in my mouth and said brush your tongue and prescribed some kind of acid reflux meds that you can purchase over the counter. I wasn't having a problem with acid reflux. I was insulted and horrified. She didn't want to hear a thing I had to say. To say the least, I did not make a follow up appointment or purchase the meds. I left the doctor who referred me to her, who said all she knew to do was treat symptoms by prescribing meds. I wanted to get to the bottom of my problem. Finally, I went back to a Nurse PR actioner I saw yrs. ago. After she heard my whole story she did blood work up on me and discovered I was positive for Pylori...stomach bacteria. Hy Pylori causes mouth sores, and diarrhea which had been going on for several years. After the Hy Pylori the diarrhea is gone. Things got worse before they got better, but I continue to go to her because she at least reads my past medical records and treats me like I have a mind. Although now I am considering changing to a cancer doctor who is also into naturopathic medicine.
On the other hand, unfortunately most of the cancer doctors I've gone to have not read my past medical records or took into consideration RSD. Not one of the several breast surgeons talked about side effects of surgery. I was just asked to read in a few minutes a long list of side effects and sign a consent form before surgery. All my bc surgeons recommended "standard" treatment without mentioning side affects...at least they mention side effects on TV. I've seen two oncologists, one just for a consultation, and the second one I have now and both did not consider my past medical history in recommending "standard" treatment. It wasn't until I brought up my pain nerve problem that they considered that perhaps chemo is not the best option for me. Hardly anyone from bc knows our individual personal medical history yet we recommend the "standard" treatment all one and the same.
This is what I have a hard time with. It is my personal opinion that every patient needs to take into consideration their personal medical history, risks factors that come with it, and age related risks before making treatment choices. Also, I have doctors who come in the small cubicle where you wait forever for them and spend no more than five minutes with you. Unfortunately many women accept this as standard treatment and don't advocate more attention or care.
I do like my now oncologist. She is sweet natured, and lets me sees the scans and I am sure she will this next Wednesday carefully go over my path report. Initially she didn't asked more than bc history. I am the one who initiated telling her other medical concerns. Even my plastic surgeon didn't ask about my past history. He is there for reconstruction so why should he. I understand that but once I told him I had RSD his eyes lit up and I knew he was concerned it could spread to my trunk. I find that every time I have to take the initiative...then they are more likely to take into consideration that I have a nerve pain syndrome RSD that can flare up and spread throughout my body due to pain or surgery. As a result, they make sure I stay pain free. Amazing, most doctors aren't even aware of some of the syndromes and a few didn't seem to care.
My friend whose stage IV cancer that seems to be in remission said one doctor would tell her one thing and the other the opposite. One doctor is concerned about rads and another about another problem that could possibly interfere in regard to treatment. She accepted both treatments that ended up causing further medical issues.
I do respect doctors. They have a lot of patients and it is hard to keep track of all the medical problems each patient has. For this reason, we need to be proactive, study, research, and bring in questions and concerns at our appointments. One good bc surgeon said she appreciated that I came in with a list of questions and concerns. She prefers to partner with her patients then just tell them what to do. I would had gone back to her this time but she moved a few years ago
However, I am fortunate to have a good team right now. So don't fear girls, I am under the care of those who have a medical license and are considered the best in my area.0 -
Kaara, I understand fully your concern about rads for a slow growing grade 1 cancer. Since it's idc its a tough call. If you got wide margins, and no node involvement possibly the watch and wait approach might work for you. My bc surgeon said the smart thing I've done is stay up with screening so if the cancer was found again it would be early and easier treatable.
There are no guarantees no matter what choice we make. It all depends on what choice you are most comfortable with.
Because my first 2 dx were high grade 2 C or more also multifocal, I now would have recommended a mx. That's because I prefer a mx over radiation. No choices are good.
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eve: If I do the rads and it returns, my only choice will be mx. If I don't do rads and it returns, then I have other options, namely the new kind of radiation that is done at the time of surgery...one time...in a special operating room and you're done. The only place I know where it's being done right now is UNC in Raleigh NC, and like all new treatments, in a few years, it will be more widely accepted and done in more areas. I'm planning on doing thermography screening going forward so that I have a better handle on catching something before it would even show on a mammo.
Caryn: Although I wouldn't have to give up my diet and exercise program, I am taking supplements like iodine, glutathione, msm, Vitamin D-3, Vitamin C and others in high doses that I feel are valuable in boosting my immune system. I was scheduled to begin getting Meyer's cocktail which is a vitamin infusion twice weekly, and was to help offset SE's of radiation. This would have to be postponed, so it is disappointing to me and seems counter productive to achieving my goal of getting through treatment with as few SE's as possible, and maintaining my healthy immune system.
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http://www.nature.com/bjc/journal/v105/n2/full/bjc2011234a.html#bib11
This site was sent to me due to Kaara and my questions. My mind is too tired to read it right now, but will look at it later so far no opinion
I am in my 60's ... I gleened the article refers to women cancer treatment age 60 and over. 0 -
Very good analysis of the existing data for treatment of women OVER age 70. Thanks Kaara for passing it along to Eve and to Eve for posting it. Without a doubt, investigation of treatments for women OVER 70 has been under represented, similar to the dearth of clinical research on mucinous breast cancer treatments. Most of what is mentioned in the BMJ article is a compilation of what was already known about treating the over 70 population. What I found interesting though, was the point made regarding the slow recruitment for the study designed to study surgery vs. no surgery:
"Unfortunately, ESTEEM closed early owing to slow recruitment. The early closure of ESTEEM and other studies in this population of patients (see below) demonstrates the challenges associated with non-blinded studies, with major differences between the groups and a direct comparison of the approaches is not likely to be forthcoming."
A while back on this thread AA said that she was frustrated by the lack of, and slow development of clinical trials and questioned why it took so long to do studies. Here is a prime example of the challenges of designing a study and conducting it. This study also demonstrates how meticulous the researchers are in developing trials in the quest to directly answer very specific questions. I can also understand why the study was closed due to poor enrollment. First off, many frail elderly women DO not get regular mammograms, because it is not recommended for that population. So, the question is, how many frail elderly women diagnosed with breast cancer can they find and then get to agree to participate in a trial? Not very many is my guess. And, because they are frail, it is more than likely that they might die before a reasonable length of time to measure whether or not they had a recurrence. So, although the question is a good one, could elderly women with favorable breast tumor prognostics forgo surgery, it is obvious, that finding enough women to participate in the study would have been dubious from the start.
So, getting back to AA...there are numerous reasons why it takes so long to do a study and there are even more reasons why some studies remain incomplete...or why even some can never begin due to ethical considerations. No conspiracy theories here. Just, honest to goodness, decent, intelligent folks doing what they do best...trying to find the best treatment and dare I say, "cure" for breast cancer. Without a doubt the process is slow...but at least it is steady. This BMJ article is a testament to the hard work being done by researchers.
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THANK YOU, hillck. Do you know most of the clinical trial patients are children???? This is because kids' cancers receive the least amount of funding - 3%! Once I am done with Herceptin, I will DEFINITELY enroll in a clinical trial - no way I am allowing some poor little 4 year old to blaze the trail alone.
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Sweetbean...That is so wonderful of you! As I mentioned earlier on this thread...the real heroes in all of this are those folks who participate in clinical trials.....
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As mentioned, the number of patients who participate in trials is very low, usually because the people want certainty when dealing with cancer and they feel that they stand a better chance of winning the current therapy lottery. It is hard to accrue enough patients to demonstrate the value of likely improvements in care. As mentioned, some very worthy trials like ESTEEM don't fill, often because patients at that age usually turn down standard recommended treatment anyway.
A number of years ago (before most of those posting here were diagnosed and received information regarding current choices of therapy), I remember the roar of criticism I received from other breast cancer patients for daring to be among those heretics who took on the challenge of participating in the trial for use of low-dose testosterone for early stage breast cancer patients. That was my contribution for dealing with the unknowns of hormonal effects and the issue of low libido that I personally was complaining about. The constant peer pressure against participation was remarkable, considering that the only way to know is to complete those kinds of trials. I'm still here, and proud of having helped to provide a little more knowledge for those who are currently dealing with breast cancer.
Some do take those efforts for granted, and assume that they simply have been more choosy about their medical providers, or have been more intelligent about asking questions at time of diagnosis.
A.A.
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