Why Im Not Doing Chemo
Comments
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AA...
My oncologist discussed the NCCN guidelines with me. Interestingly, the following year's guidelines became more conservative for my type of BC. I was offered chemo if I wanted it... But was told it wasn't necessary by him and two other oncologists. I was offered ovarian suppression and was invited to participate in a clinical trial which I declined. I think all my options with evidence were explained thoroughly to me. I think your experience is individual and does not necessarily speak to the experience that other people like myself had.0 -
thatslife, I'm not sure what Metformin is? What do you know about it and why would you choose Metformin?
AA...I haven't been interested in learning all the technical terms until now. Those just coming on board perhaps need a thread explaining so many abbreviation or dictionary defining technical lingo in layman terms. Perhaps another thread would be on meds and the side effects of each one like they do on television. I'm not sure patients consider or even know the side effects their doctors prescribes them their meds or treatment plan. For sure, not one of the drs I have talked about the side effects. They just said, "standard" treatment...a word that I now have a hard time with.
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eve - type Metformin and Breast Cancer into the search tool and it will take you specifically to a thread begun by imbell0
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VR,
My experience is similar to yours. As a matter of fact, when my first MO was not explaining all of these things to me and answering my questions and concerns, I switched to a new MO. My diagnosis is much more recent than AA's so perhaps more doctors are forthcoming with their patients and patients know they need to find a new doc if they aren't.
Caryn0 -
voraciousreader,
I hope you are right about my experience, and that oncs have come around since then to providing the essential info to the patient at time of diagnosis. My onc knew I live hundreds of miles from the cancer center and would be returning home for treatment locally. I asked him to provide me with either a doc who might be training under him, or else a nurse, who I thought might be more able. He was resistant, but eventually he provided a nurse. The nurse was in her 20's and had no awareness about chemopause or menopause, and talked only about nausea, etc. She had no info about the question about surgical ovarian ablation as an alternative.
Had the NCCN guidelines explained what systemic adjuvant treatment means rather than separating out chemotherapy entirely as the first treatment explained and emphasized in great detail, followed by the chart mixing up all medications together, and then just brief listing all other treatments as if they are less meaningful, it would be a less confusing and less biased presentation. Most people never pick up on those kinds of subtle manipulation of the message.
A.A.
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evebarry,
One of the reasons I am so persistent here is because unlike many, I was familiar with general medical terminology at time of diagosis, and I still had tons to learn about breast cancer at diagnosis. I didn't get any real understanding of my situation at the time, or any help with it. There was no online source for me at the time like this one. But your task is harder still because your diagnosis is not as common as mine was. The learning curve for it all is steep and frustrating.
It doesn't help us to have medical providers with an overwhelming advantage, who have never personally done treatment, and who benefit from providing options that offer them protection and income, and determining the access we have to treatment by way of "guidelines", as long as they brush off the importance of comparing less toxic treatments for the earliest stages of breast cancer.
A.A.
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AA...I appreciate what you are contributing here. I'm for sure challenged by the discussions. I am sure their are medical providers that individualize treatements plans. One bc surgeon said that had no oncologist that she felt comfortable recommending to me because of lack of bedside manners or they would only recommend "standard" treatment. She was one special bc surgeon. I have a pretty good oncologist right now that is listening and seems to know the in's and out of cancer...also supportive of some alternative medicine. Learning more of these technical medical terms will definately help me in conversing with her and in understanding what she is saying to me.
The whole early stage cancer guidelines are a bit confusing.
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That's-life, just wanted to say that my sister just stopped taking metformin for her diabetes. Her skin started changing color after a few months on it. She exercises everyday, so maybe that had something to do with it? Anyway her doctor told her she didn't need any meds anymore as the exercise and diet was keeping everything under control!
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attitude is everything.. in every perception, in every decision.
AA - this doesn't make sense to me.
"It doesn't help us to have medical providers with an overwhelming advantage, who have never personally done treatment, and who benefit from providing options that offer them protection and income, and determining the access we have to treatment by way of "guidelines", as long as they brush off the importance of comparing less toxic treatments for the earliest stages of breast cancer".
It doesn't help us to have medical providers with an overwhelming advantage, ....... as long as they brush off the importance of comparing less toxic treatments for the earliest stages of breast cancer."
Do they? Don't they? as long as they do? as long as they don't? being familiar with medical terminology does not give one a logic pass to opine.. maybe it does?.
Like the doctor's oath.. "First do no harm" should be a mantra here. For some reason i get the idea this thread is a dangerous thing to read for the newbies.. I wish it would be moved to the bottom of the index.
(copied and p m ed to myself)
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AA...I am sorry that you had that experience. I would assume that many women have had similar experiences. Honestly, I never take for granted the TERRIFIC care I receive from ALL of my physicians and their staffs. My 86 year old mother, a retired nurse, who lives in Florida (of course) marvels at how attentive my physicians are. She claims I have them trained. She said in Florida, one cannot expect to get the level of care that both my husband and I receive from our physicians. My sister, also a nurse, lives near our mother and together we coordinate her care. I have been to Florida and read my mother's doctors the riot act. I've also had her change physicians...right down to her foot doctor! I firmly believe there are WONDERFUL doctors and staffs. It's just a question of finding them. Sadly, when one is faced with a potentially catastrophic illness, more often than not, it is difficult to find the "right" doctor when you need them. That's why second and even third opinions are so important...sometimes.
Getting back to the NCCN guidelines...If one closely follows the guidelines, one notes that for every damn recommendation...THERE IS AN ACCOMPANYING FOOTNOTE. And THAT'S where it gets interesting! Reading the footnotes provides as much important information as the recommendation does. Often it will reference the level of evidence to make the recommendation in the first place AND it will mention alternatives...such as ovarain suppression. The problem is...YOU HAVE TO READ THE FOOTNOTES...or have a physician like mine, who will discuss the recommendations, with the evidence, as well as the footnotes with the alternatives. AND...when you are finished reading the CURRENT NCCN guidelines, it is always a good idea to read several previous years NCCN guidelines so you can see TRENDS.
For sure, the "average" person is NOT going to do that. But, I always believe that knowledge is power and I welcome the challenge of reading EVERYTHING. Interestingly, by the time I'm finished reading...I usually don't have many questions because, for me, everything begins to make sense. I remember my last 6 month appointment with my MO. I had all of one question on a Post-It. He must either think I'm an idiot or a genius for not having much to discuss. Does he think I know nothing, so I can't think of asking a question...OR does he think I'm brilliant and don't need to ask questions because I know all the answers....
hmmm...... Again, I am sorry you had the experience that you had. Thankfully, exbrnxgrl posted and it gives me hope that the care WE received is now more common.
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Piggybacking what Apple just said...I think guidelines are EXTREMELY important FOR every specialty. In fact...every specialty has guidelines FOR OUR PROTECTION.
I just finished reading the book about the assassination of President James Garfield, Destiny of the Republic. Had the American doctors who were treating him followed the European guidelines that Dr. Lister created that had to do with antiseptics...Garfield would have lived.
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Eve...So have you decided yet? Has your doctor contacted Dr. Slamon? I am really concerned for you. You know, when you said you were diagnosed with an HER2 + tumor, I became quite concerned for both of us. I recall that one of the doctors saying to me that if I got a recurrence, it was more likely to be the same type of invasive cancer. I find it very concerning that you are now faced with a more aggressive cancer. I remember also, when the doctors spoke to me about taking Tamoxifen, they said that the absolute benefit would be minimal. However, they thought it would protect me from a future cancer, and so that's why I agreed to try it.
I don't think ethically speaking there will ever be a clinical trial of just Herceptin alone. I think HER2+ cancers are just too aggressive to design a clinical trial that would NOT include chemo in the mix. I might be wrong and that's why it would be interesting to hear what Dr. Slamon has to say.
I also want to put forth one more idea. When choosing my protocol, I always told my doctors that I would try everything and if I had side effects, then we would revisit my treatment plan. Everyone has quality of life issues that need addressing when choosing what's "right." But I also think that many quality of life issues can be mitigated. Like you, I live a very healthy lifestyle. And I think that is why I've been lucky enough to have little quality of life issues from my treatment.
One of the differences though, between us, is that I don't OVER think my decisions. Once I've make a thoughtful decision, I move on. You mentioned a little while back that you regret that you didn't decide to have the mastectomy after your previous diagnosis and that maybe you wouldn't be here today with having to make all of these even more difficult decisions had you had the mastectomy earlier. So my question to you today is, were you given wise advise earlier and chose not to take it AND now you lack confidence in your decision making process, which is making you question EVERYTHING?
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Hi All,
Anyone had any success taking Boswellia serrata?
Lassman
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lassman.. if you use the search function to 'search' Boswellia..(upper right hand corner of the task bar) you'll come up with many positive reviews.. it's particularly helpful with brain tumors and swelling... people love it.
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VR:
1. "Getting back to the NCCN guidelines...If one closely follows the guidelines, one notes that for every damn recommendation...THERE IS AN ACCOMPANYING FOOTNOTE. And THAT'S where it gets interesting! Reading the footnotes provides as much important information as the recommendation does. Often it will reference the level of evidence to make the recommendation in the first place AND it will mention alternatives...such as ovarain suppression. The problem is...YOU HAVE TO READ THE FOOTNOTES...or have a physician like mine, who will discuss the recommendations, with the evidence, as well as the footnotes with the alternatives. AND...when you are finished reading the CURRENT NCCN guidelines, it is always a good idea to read several previous years NCCN guidelines so you can see TRENDS."
Maybe I am technologically challenged along with being the rare person who didn't experience treatment by better medical providers. Is there a setting adjustment that I can't see, that I (and the others who go to the guidelines) need to turn on to be able to see them?
http://www.nccn.com/files/cancer-guidelines/breast/index.html#/1/
2. "Had the American doctors who were treating him followed the European guidelines that Dr. Lister created that had to do with antiseptics...Garfield would have lived."
Interesting point. The guidelines used in Europe are often more progressive than those in this country, and that includes their perspectives about breast cancer....
3. "I don't think ethically speaking there will ever be a clinical trial of just Herceptin alone."
There already is such a trial going. Have you done a search to see?
4. "I also want to put forth one more idea. When choosing my protocol, I always told my doctors that I would try everything and if I had side effects, then we would revisit my treatment plan."Unfortunately, many of the side effects don't happen until long after the treatment plan has been completed. So while I can review them with my provider after the fact of treatment, and they can suggest possible ways to deal with the permanent long-term side effects, if those solutions don't work, one can't go back and undo the treatment that caused the permanent side effects. Your post would indicate that you were intelligent enough to do that, but perhaps I wasn't? So I want to mention that I've seen multiple very competent, qualified and caring OB-GYNs about the long-term problem of dyspareunia, all of whom have provided various suggestions, none of which have worked in the least. After TEN YEARS of seeing providers about this, I am now very interested in the suggestion provided NOT BY all those expensive HEALTH CARE PROVIDERS but by patients on these forums, for something called "Scream cream" that these patients are sharing here with those like me (who have spent as much as a decade seeing very dedicated health care providers without success). My PCP has prescribed it, for me, and I am pursuing it.Also, as I've written elsewhere, I went to the major cancer center in the last year where my original treatment plan was made for me, and talked with a nurse there who was offering the sessions for newbies. She recommended that I seek counseling at the cancer center because it was her impression also that my experience was perhaps "the exception". (Clearly I am not; see the thread "I Want My Mojo Back" on these forums. I wonder where she has been so sadly misinformed as a health care provider supposedly providing an honest introduction to options for newbies. But... of course... we don't want to "scare" the newbies by giving them accurate information in advance.) I sought cancer counseling at the cancer center as she recommended. That counseling office responded that because they are so overwhelmed by the trauma of treatment for patients who are 2 years out or less, counseling is not available to those who are more than 2 years out from treatment or more. That is how they take patients with problems that developed from treatment on a longer-term basis and make us invisible. After all, we "don't want to scare newbies" from knowing the longer-term problems exist at the time they are having to make an intelligent choice, do we? Why do that when medical providers have guidelines that exclude the discussion of possible other options such as trastuzumab alone for early stage bc? After all -- the "guidelines" don't need to provide any guidelines for dealing with long-term side effects! They only need to provide discussion about the treatments for the cancer because in their viewpoint, the job of the guidelines ends when initial treatment ends. Why conduct clinical trials for early stage bc to know whether solutions that don't have those long-term side effects might be just as successful if not better?How far out from treatment are you?Hillck:1. I may have also come into this DX with a different attitude as well, because of my family cancer history (but no BRCa mutation).Me too - mother, sister, aunt, cousin, etc. - none of whom ever had chemotherapy, all of whom never had a recurrence but one in the 1950's, whose cancer was discovered late.2. I wasn't blindsided by my cancer DX like so many women are. I didn't expect I'd get it, but when I did I wasn't thrown into shock or grief. I immediately went to work to try to figure out what MY best approach would be.Me too. I wasn't surprised or shocked, and I immediately went to work to try to figure out what MY best approach would be.3. Before I started chemo, I was given a personalized notebook that included detailed info on each of my treatment drugs. All possible SEs were listed and pages and pages of how to ward off or handle various SEs was included. Do other cancer centers provide that as well?I was handed that information at the time I sat down for my first chemotherapy treatment. It was never provided by the cancer center, but only by the nurse in my home town at time of treatment.4. I don't think that anything in those studies gives an indication that the addition of Herceptin made an improvement so great as to suggest its benefit as a single agent.Did it provide clear evidence that it wouldn't? It is important to verify one's assumptions.5. I think for those who want to make that choice on their own or who have other health problems that come into play that allowing them Herceptin only should be possible, but I don't think a gold standard, blind study would be ethical.That is the point. The guidelines are part of the process of making sure that those of us who would be interested are only able to choose between having chemotherapy or not having treatment at all. Eve has discovered that at least some doctors take into account her individual situation after they have followed the guidelines and offered chemotherapy to her. Other patients, if they stick to the guidelines and don't have that kind of doctor, won't have that choice.6. How far out from treatment are you?A.A.0 -
I do think it is worthwhile to add an anecdote about actively participating in my care and being proactive.
I complained about the increasing-over-time, long-term effect of dyspareunia to one internist, one onc and one OB-GYN multiple times, along with my scheduled visit discussions about the rads necrosis pain, lab results, etc. Over the years I proactively requested copies of the clinic note for each visit.
The ONLY doctor who indicated in any of the notes that I had dyspareunia was the OB-GYN.
If it isn't written down, it doesn't exist.
How many patients are suffering from these kinds of long-term effects of their treatment and whose long-term effects are routinely never written down by providers, and so those problems just "don't exist"?
http://community.breastcancer.org/forum/8/topic/776318
I'm not saying at all that the option of chemotherapy is not a valid one for those with early stage bc who want it. But the assumptions that are being made and repeated, such as "chemo plus herceptin is more effective" without understanding that the true basis is "chemo plus herceptin is more effective than chemo alone", so that the truth is suppressed, are doing a disservice, not a favor, to early stage breast cancer patients. It isn't that it is being done maliciously, or even with intent to give false information. In fact, it is being done out of concern that someone who is very new to understanding treatment might be inclined not to choose treatment that is effective enough.
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AA,
I think VR is refering to the Physician's version of the NCCN Guidelines. I included the link in one of my earlier posts but here is it again: http://www.nccn.org/professionals/physician_gls/f_guidelines.asp
You need to register to be able to see the physician's guidelines but it is free. The detail and explanations are much better than what's available in the Patient's version.
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AA... Beesie is correct. The footnotes can be found in the professionals NCCN guidelines.
Regarding long term side effects, I wholeheartedly agree with you that you might not see the long term side effects for a very long time and that's why it is so important to have a trustworthy team. When I was diagnosed, the first thing my internist said to me was that he thought I would survive the cancer but he hoped that the treatment would not eventually lead to side effects that might ultimately kill me. So TOGETHER, my internist and I work to avoid the long term consequences of having to be treated for cancer. Likewise, I have had OB/GYN issues since before my cancer adventure began and continues since. Again, I work together with a terrific gynecologist. I've lost track of how many gynology procedures I've had and am holding on to my dear parts for as long as possible.
I am happy with my care despite how hard it seems at times to stay ahead of the proverbial eight ball.
Regarding HER2+ clinical trials, I have never had the necessity to have to research it. I just read Robert Bezell's book about Dr. Slamon's discovery of Herceptin.
I do wish you well AA. Clearly there are many capable doctors out there, while there are a few who we all wish would change professions. But the bottom line is that they are all "practicing" medicine. I sometimes wish they were't all "practicing" but instead knew intuitively what to do!0 -
I don't think everyone has the same outcome, or at least, I hope most don't end up doing as much as I have done to be informed and proactive and yet with so many unnecessary and substantial barriers along the way. I'm glad to hear that others such as VR and hillck haven't had that kind of experience, and won't as they get past their second year out from treatment and with each anniversary. I do think it happens mostly for those who are 50 or older at time of diagnosis, and given that the vast majority of breast cancer patients are over age 50, that is quite a lot of us. I especially hope that those who are diagnosed at a younger age with fewer side effects for more years will be understanding for the majority of us as we all get through it -- and understand why standard treatment guidelines and advice might not be as helpful to us.
A.A.
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I was 53 at diagnosis. Also had two emergency life threatening surgeries. One at 30. The second at 41.
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Agree with you Cindy and VR. I was almost 55 at diagnosis. Have not done chemo, since I skipped quickly to stage IV but am on Arimidex. I have nothing but praise for most, but not all, of my docs. My current MO is a gem as was my RO. I feel very well informed about my disease and treatments, both the upside and the down. I feel as if I set this course in action because that's what I expected from my medical team. If they failed to deliver they were off the team. BC stinks and there are trade offs one has to deal with to live. I think it can be done without totally giving up QOL (for many people) and you can find medical professionals who will give you their best.
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exbrnexgrl,
It is wonderful to hear that you too received excellent service, and are particular about your care and your providers. I couldn't agree more. Hopefully, as you too move past the first two years and into later years you will continue to thrive and be happy with the outcome.
A.A.
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hillck,
The problem is an ethical one. Chemotherapy, even though it has a fairly poor track record of being effective, is the standard against which any other treatment has to be measured, which prevents any possible better solution from being tested without chemo. Yet there is the belief among us that "someday, something better will be available". If we pretend that trastuzumab never came along, and that "something" was discovered that genuinely was as good as chemo or better but with fewer side effects and requiring fewer support drugs and fewer lab tests, etc., we still would not be able to find out whether it actually could stand on its own because it would have to be given with chemo as an ethical practice. How would we ever get to the day where "something better will be available"?
What happened with trastuzumab is that by designing trials for participants who were limited to patients at higher stages and excluding patients at the lowest risk, it was possible to at the very least try to see if "something" added to chemotherapy could improve outcomes for patients with breast cancer that was considered especially fast-growing. This was also done in part because they weren't sure how dangerous the other problems with it might be, such as cardiac damage, and it didn't make sense to expose patients at lower risk to the unknowns of those kinds of problems with trastuzumab.
I don't think anybody was deliberately "suppressing" trastuzumab. By getting it through those trials, it provided better results for those at higher stages, and that is very much worth doing. But one has to realize also that IF early stage patients had been included in the trials, the results would not have been nearly as dramatic, because proportionately fewer early stage patients would ever recur anyhow. It worked -- as long as we don't ever ask that chemotherapy not be part of the solution.
As I mentioned earlier, as long as patients (the consumers and their insurance companies) continue to be satisfied with doing and promoting chemotherapy for others, where is the impetus going to come from for the development of better treatment? Right now, as long as oncologists and PCPs provide it as the standard of care for consumers who promote it, they are covered and make a living with it, and are seen as dedicated professional providers for doing so.
And those in poorer situations elsewhere can't afford the chemo, much less the trastuzumab, but they don't have a voice as consumers anyhow.
Until patients (consumers) show more interest and less support, everything will have to spend time being shackled to chemotherapy.
A.A.
P.S. There actually are a number of HER2 positive bc patients who have had to go without any herceptin because they would not do the chemotherapy. Is that a terrific ethical outcome of keeping chemotherapy as the standard of care?
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AA, I relate to your issues with chemo induced menopause. Menopause sucks on so many levels. I was warned by my onc that the recommended treatment would likely cause memopause, but except for hot flashes, I didn't realize what that meant! (less enjoyable sex, wrinkly face, loss of muscle mass, pea mush in my head instead of the pretty good brain I used to have). For me knowing would have made no difference because I would have done the treatment anyway. The odds I was given without the treatment or with less treatment (yes, I was given them all) were not good enough for me. But I definitely agree docs need to be careful about over treatment. The problem is where is the cutoff where the risk is worth the price (menopause)? Chance of recurrance 5%, 10% 15%, 20% 30%, 40%? So even though with all of the odds of recurrence I mentioned, treatment is not likely to make any difference because there wouldn't have been a recurrence anyway, the risk of recurrence (because it often leads to death for Her2+ cancer) for all but 5% is too great for me and I would do almost anything to reduce it.
Regarding more studies with less harsh treatments - for Her2+ cancer, there are now so many targeted agents that have shown efficacy (most still in development), that researchers are starting to think about non chemo regimens with multiple targeted treatments for adjuvant treatment of Her2+ cancer. So hopefully in 5 or 6 years, newly diagnosed pre-menopausal Her2+ can be spared what we put up with. A big problem is finding enough research money to do the studies - NIH is broke and more tax cuts will not help the situation - so its lucky we have big pharma to fund the studies? (Full Disclosure: I work for big pharma).
I am sorry you are so miserable due to menopause. Have you tried the scream cream mentioned on these boards. I'm going to get a prescription next time I see my OB.
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Orange1,
If the information for comparison of the standard treatment (chemotherapy, rads, tamoxifen) vs surgical ovarian ablation, rads, and then if necessary, tamoxifen (at that time no AI's were available to those without mets) had been provided to me, I would have probably chosen surgical ovarian ablation, rads and possibly tamoxifen.
Unfortunately, none of us can say whether chemotherapy, rads, and hormonal treatment would be better than that choice, and since that information is not available it can't be considered "standard of care", whether or not it offers as good or better results.
Online estimators such as Adjuvant Online don't seem to mind comparing the outcomes for each patient's situation between choosing hormonal therapy or doing chemotherapy or doing both, so why are they not willing to provide a comparison with choosing ovarian ablation by other than chemotherapy + radiation if indicated + hormonal therapy if indicated? (Plus trastuzumab, of course, for each choice, for those who are HER2-positive.)
We are not allowed to compare. And no one even notices, because they are so busy considering chemotherapy or no chemotherapy.
A.A.
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AA... I take exception and find insulting your suggestion that patients naively accept the status quo, while doctors,researchers and pharma reap monetary gains at our expense. Very insulting to all the researchers toiling in their labs. Insulting to doctors, like my niece, an oncologist, who is as devoted to her patients as she is to her husband and young family. Insulting to every woman who painstakingly and courageously chooses a treatment protocol.
I sincerely believe that the only agenda doctors and researchers have is to heal. Am I naive? Perhaps. But as sure as I am that the sun rises in the East, I am sure that one day, hopefully sooner than later, there will be many more targeted therapies that will spare women the worst of the best treatments in cancer therapy and will ultimately save more lives.0 -
Just for the record, I am doing ovarian suppression. It was highly recommended OVER chemo for me.
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AA: I read somewhere recently that in 3rd world countries, where breast cancer rates are rising rapidly, and where chemo and the cost of it is out of the question, (and not an 'ethical' consideration) other, cheaper options are given to those women. It can indirectly be looked at (as in the article I was reading) as a 'chemo free' treatment response rate in a population. I wish my brain was working, but the mushed peas description a post or two above describes my brain in the last few months. If i can find the studies I will, but if you want to maybe google BC treatment response rates in 3rd world countries, or often I come across these figures while looking up various diets and BC world wide. Expensive chemotherapy is a first world 'luxury' option.
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AA - you keep forgetting that you may well still be here because you had chemo. I guess you'll never know. I love someone's signature line that says "The best side effect I have is being alive".
Your arguments against chemo have no merit when weighed up against trials and retrospective studies.
I'm with Voraciousreader - people dedicate their lives to finding a cure. I met one baby onc (as I like to call him) who went into oncology because he lost his little brother to cancer. They sure aren't all in it for the money.
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VR,
I do respect the efforts being made, and I'm sorry if I indicated otherwise. But I do also think that on an unemotional and logical basis, consumer demand is very effective in keeping the status quo in place.
There are certainly low-risk patients who are recommended to do ovarian ablation without chemotherapy. I still have no answer from anyone as to why ovarian ablation is not included as a factor in such sites as Adjuvant Online for all patients to consider and to choose from based on their individual risk and preference.
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