Why Im Not Doing Chemo
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voraciousreader - thanks for the information. I have researched the Nottingham score as it was indicated on my path report - and, of course, my MO did not even bother to explain it to me. I have a combined score of 8, so the likelihood of recurrence is high for me. I am not going to let my prognosis pull me down, though. I will be proactive with my oophorectomy, eat healthy and exercise.
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Thanks for the dedication you ladies have to all the research...my head is about to explode from trying to digest it, but it is certainly interesting and worthwhile. Your efforts are appreciated.
I read an interesting article in "Life Extension" magazine about metformin, the diabetic drug, that has been shown to have astounding results in slashing cancer...57% in 8,000 diabetics over 10 years, I believe it said. There is talk of trials for non diabetics, but as we all know, that will be delayed forever because if this inexpensive drug has that great of an impact on cancer, with little or no SE's, imagine what it could do to the profitable chemo market! Have any of you done any research on this drug, and if so, what do you think?
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Kaara - I read quite abit of info on another thread yesterday about the diabetic drug. I will try to find the thread - I was on-line a lot yesterday and went to many threads.
Sher
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Darn, Karara, I have not found the thread yet, but will keep an eye open for it today as I pop in and out. Must be a thread where everyone got off topic a bit. It was very interesting, though,.
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I found it, Karara - yea, my brain still works at times! It is under the Alternative Med forum: thread is: Metformin.Hope this helps.
Sher
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karrra - I will bump it for you.
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Karra - duh to me - it is under "Complimentary" forum.
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too funny, Kaara - I just went to bump the thread and saw that you found it 23 mins. ago.
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Oh, so much good info this morning! Thanks, Beesie, for reposting the staging info, and for everyone elses's comments.
evebarry--sorry to hear about the expander resting on a nerve. Hopefully that will get better as it expands. When I had my exchange, I ended up with a nerve injury. Either from the implant or a retractor. It was horrific, and I ended up on gabapentin till I got the implant out and the scar tissue removed. RSD is wicked. I've seen it develop from the most innocuous things--a sprained ankle. A routine knee arthroscopy. It's poorly understood and only discussed after it happens...I'm glad you've found the key to managing your RSD. That is such a challenge for most people, and opiates become their management.
The Metformin thing is interesting. I think treating insulin resistance, and even preventing it, will be key to many illnesses and disease processes.
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Anandagram: I posted on the Metformin thread, but did not get any feedback other than disucssion about how it related to effectiveness with exercise. I was so impressed by the article in "Life Extension" that I want to ask my integrative physician to consider prescribing a low dose for me. I don't see how it could hurt as there are no notable SE's from it, and non diabetic cancer patients are taking it with their doctor's approval.
I'm no scientist, but the logic seems right, as it supresses glucose, and goes along with the anti cancer diet that I follow that also eliminates starches and sugars in an attempt to starve cancer cells. The drug activates a protein molecule essential to life, AMPK, which essentially starves the tumor cells of vital energy needed to grow.
To quote the article.."Perhaps the most detailed picture of metformin's antiproliferative actions comes from a 2011 study in France...Researchers there added metformin to melanoma skin cancer cells in culture and monitored the effects. At 24 hours, metformin had starved the cancer cells to the point that their replicative cell cycle was arrested. By 72 hours, the cells underwent autophagy, a mechanism whereby starving cells literally "eat themselves" in a desperate attempt to survive. By 96 hours, the cancer cells begin dying off en masse by apoptosis."
Well worth it to google and read the article in the Feburary 2012 issue of "Life Extension"
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Kaara,
Did you read the study about metformin and exercise? It was a bit disconcerting to me because I work out every day. It said that Metformin worked on the non-exercise days, but not on the days when people did cardio. What do you think about that? Of course, if you do more gentle exercise, that may not be a problem. If it weren't for this study, I'd be really interested in Metformin. (I have heard of people having SE's, by the way.)
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AA, I understand that treatment guidelines cross-reference staging. I said that "Staging and treatment guidelines are two different things." I didn't say that they are completely unrelated and disconnected. In fact I pointed out that in staging patients and thereby assigning a prognosis, there is an presumption that patients will undergo the appropriate treatment. So of course there is a connection. Treatment is not however included or referenced anywhere in the staging documents or in the determination of one's stage.
And yes on page 58 of the NCCN patient's guide it does say that "The treatment guide is organized by clinical stage...." Then on page 64 you see that they actually group together the treatment considerations and guidelines for what they call "Local Invasive Breast Cancer", which includes Stages IA, IB, IIA, IIC, and IIIA (T3, N1, M0). So despite what they say, they do not in fact organize the guide by clinical stage - they group a whole bunch of stages together. They do not have different and separate treatment guidelines for Stage I vs. Stage II vs. Stage III (never mind the "A"s and "B"s).
My post yesterday was in response to specific questions and comments made by Eve in the December 2011 Surgeries thread about Staging and the significance of being Stage IA. I was simply trying to make the point that not too much weight should be put on the Stage because there are a lot of other important considerations in one's prognosis and in making one's treatment decisions. I also wanted to make the point that the prognosis that is associated with one's Stage presumes adequate/appropriate treatment.
Determining (and possibly challenging) what is appropriate treatment is a different discussion. I wasn't suggesting that it's not an important discussion but it had nothing to do with what I was saying in my post yesterday.
Eve, I agree wholeheartly that "there is a lot of confusion about staging on the bco boards, which either give false hope the odds are the same making it for over or under treatment due to staging. Maybe we should copy all this staging conversation and open up a new topic, "Staging Confusion"...what do you think?" I think the discussion here is interesting and I wanted to give you my thoughts about your comments, but I don't want to get into a more open/general discussion about staging. As I mentioned yesterday, I've gotten in trouble before for suggesting that stage is linked to prognosis. I have enough trouble... don't need anymore!
And I agree too that there probably are more factors that should be considered in determining the stage. I remember reading the article that VR posted about grade about a year ago; I think it will be very interesting to see where this goes. Perhaps grade should be considered, and HER2 status, and Oncotype score and maybe some other things too. But as I tried to explain in my post yesterday, staging is slow to change. And for now, staging seems to work pretty well. Even though all grades are grouped together, even though HER2 status is not considered, the prognosis of those who are Stage I (or any other stage) tends to group together within a fairly narrow range. And that's because treatment guidelines are differentiated by all these other factors and it's these different treatments that even things out among all the different diagnoses that are included in a single Stage.
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sweetbean: I saw the concern posted, I did not read the study. The article I read seemed to tie it to exercise, which also activates AMPK, and is known to be an inhibitor of cancer. From what I have read so far, the benefits outweigh the risks enough that I would consider looking into it further.
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Thanks for the detailed responses, Beesie and voraciousreader. I understand better now what the reasons are for your limited endorsement of the guidelines for now, based on your beliefs that they will eventually change for the better as science makes progress.
It is difficult most of the time for any recommendations that result from a group process not to have flaws.
I have seen a decade pass without seeing most of the flaws of the guidelines addressed in any way. My point is that as long as we as cancer patients put our stamp of approval on them "for now" in the hope of more progress sooner (or later), we aren't doing squat to get those flaws addressed for the latest generation of cancer patients, and we are in effect as experienced cancer patients encouraging providers and new patients to "go with the flow".
It is particularly unconsionable that the guidelines have been in existence for as long as they have, with the knowledge that the recommended treatments do include extensive side effects, and continue to provide completely inadequate warning about that by failing to include specific recommended guidelines for the side effects caused by the treatments. Without that basic level of truth and compassion, I personally think the guidelines fail to qualify as being adequately truthful for patient use -- even on a "temporary" basis lasting a decade.
I hope you are right and that the guidelines will incorporate more truth, and that better treatments are just around that next corner -- let's compare notes in 5 more years.
A.A.
P.S. They devoted so much care with the support sections that are separate from the guidelines (thereby avoiding doing the homework to provide guidelines for side effects) that by following their carefully designed and deeply thoughtful path, this is the result:
Using the following links, I ended up at a screen that dealt with sun exposure!
Life with cancer
then
Managing symptoms
then
Intimacy and Sexual Issues for Patients Undergoing Cancer Treatment
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Kaara said a lot of this staging discussion is hard to digest. I agree, especially for the lay person, and newbies, who will more likely have a difficult time with medical terms discussed here...and although I've been around for awhile some of it is over my head.
If possible could you simply summarize the medical information downloaded. It's more the medical terms or abbreviations that lose me.
I appreciate everyone's imput. You are all brilliant women!
Treatment decisions are based on axillary node status, age, tumor size, histologic tumor type, tumor grade, hormone receptor status, and coexisting medical conditions [22]. However, most patients with node-negative disease who receive chemotherapy will not derive benefit because they would not go on to have a recurrence even without such treatment, which also questions the necessity of performing the Oncotype Dx testing in T1N0 tumors. New prognostic and predictive tests are needed to better individualize therapy and confine systemic treatment, especially cytotoxic chemotherapy, to those patients who are most likely to benefit [23, 24].
I think it was AA who posted it in the abstract? According to what I read then basically those who are node negative should not be encouraged to have chemo. I also liked that it said test are needed to better individulize therapy...I so agree. For this reason, and others as well, I think the whole staging definately needs to be done away with and individual plans made in its place. My oncologist and bc surgeons both said that according to your stage this is the recommended "standard" treatment. This is what most bc women are going to base their treatment plans on? It is what I call the cookie cutter approach. Yet...for someone it may be over treatment and not take in consideration their age, over all health concerns or the her factor.
I appreciate Beesie taking the time to answer my initial question in staging. Although the discussion has gone beyond what I asked, I am thrilled to discuss all this more because of all the confusion about staging and treatment plans.
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TNM category...define
Nottingham score...my path report said I score 8/9. I recall an earlier score for dcis 4/9. Maybe the Nottingham should be considered in the staging process along with the her2 factor.
BTW...what is the significance of the Nottingham score compared to the staging we have after our final path report? Although I read it in the path report the surgeons didn't mentioned it in our discussion. How important is it in treating cancer? Apparently not that much since we never talked about it.
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I don't think any responsible onc will recommend a treatment based on stage alone, but I also think it shouldn't be "done away with" because it does provide some useful information along with things like grade and oncotype score. I had a grade 2 cancer -- so medium in terms of aggressiveness -- and I know that if I had been stage I and node-negative, I would have either skipped chemo or had less of it. But because I had a positive node, I got the dose-dense chemo.
My onc has explained that each bc has its own personality in a sense. A tiny tumor that is already in the lymph nodes, regardless of its grade, is a tumor that knows how to move and should be seen as aggressive. A large tumor in one lymph node, however, is taking its time, again regardless of the grade. A good doctor will make a recommendation based on all this information, but certainly staging is part of it.
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Eve you wrote: "According to what I read then basically those who are node negative should not be encouraged to have chemo." I disagree, the statement you bolded above says "most" patients not "all" patients. That statement does not address HER2 status. We already have a test to help individualise treatment that is offered ie. the FISH test. They don't even do oncotype on HER2 tumours because they are so agressive, all the oncotype test does is confirm the HER2 status.
Sue
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Eve - the 8/9 score is what is used to set the grade eg Grade 3
I found a site which explains it.
http://ccm.ucdavis.edu/bcancercd/311/grading_diagram.html
My HER2 tumour scored the highest possible
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mitotic rate n. The proportion of cells in a tissue that are undergoing mitosis, expressed as a mitotic index or, roughly, as the number of cells in mitosis in each microscopic high-power field in tissue sections. The American Heritage® Medical Dictionary Copyright © 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. All rights reserved
mitotic rate or our cells turning into cancer cells at a slow or faster rate?
I'm an artist not a scientist so some of this scientic lingo is greek to me and I have to visualize it
Scientific abstract words are sometimes confusing.0 -
When I first independently literally stumbled my way into the NCCN guidelines years ago, I was happy to have them because doctors liked talking a bit about stage and grade without ever telling me about them, or even simply walking over to the computer and pulling up the guidelines so that I would have the same frame of reference they did in making the recommendations about treatment. At the time my onc didn't even feel it was important to tell me I was HER2+++, or about the trials that were just about at completion.
I do think the guidelines help to provide some structure for doctors to be roughly on the same page with each other in promoting the application of standard treatments, and to make sure that for most stages, chemotherapy is the standard treatment that anything else has to be compared with, even though chemotherapy has a pretty minimal track record and is unpredictable for any given individual situation.
Finding them also forced me to work at acquiring the difficult concepts and terminology used for them.
Unfortunately, as time has gone by I am also better at understanding that by remaining so authoritative for access to treatments, and so difficult to interpret, they are also a very effective way to make sure patients don't realize the bias they present.
Where, for example, are the guidelines for use of a sequence of treatment such as surgical removal of the tumor and the ovaries, then rads, and then tamoxifen, as a choice one could make as a 51-year-old with IDC (T1c), ER+, PR+, HER2+++?
Answer: Not an option, not because it wouldn't be a reasonable choice for such a T1c (and allow the advantage of avoiding the entire range of complications that can come with chemotherapy) but because the guidelines shift patients away from no-chemo without justification. The same problem exists in regard to trastuzumab and no-chemo. The drab success rate of chemotherapy as a guideline in those situations is simply never verified.
How is a newly diagnosed patient who is trying to make a decent decision in a reasonable period of time, ever able to know that standardized treatments are not as impartial as they "should be"?
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hmm...I didn't realize the Nottingham scored your grade. I wonder why my grade 3 como-n type of dcis was only Nottingham 4/9 where the more recent dx also grade 3 is 8/9? The Nottingham are different but both grade 3.
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AA How is a newly diagnosed patient who is trying to make a decent decision in a reasonable period of time, ever able to know that standardized treatments are not as impartial as they "should be"?
So true...a new diagnosed patient has no idea what they are getting theirselves into. They are told what to do without fully or even understanding staging, grading, or treatment options. When I heard I was dx with high grade como-n type DCIS. I recall saying over a phone call is this pre-cancer or is it cancer. I thought cancer was cancer. I thought what in the world are you talking about. Looking back, I've learned a lot that has made me a little more cancer intelligent. Since I was early stage, I did not look into the more advance treatment, terms, and etc. I read enough testimonies to give me more or less a gut sense of what it is about, but in no way have I've been there are understand the terminologies or various chemos or other treatments they go through. These last 4 years my pursuit has been in cancer prevention and to find out why my body is broken or making cancer cells. I haven't yet let my mind go beyond that at this point at least...but it would be nice to understand more of the medical terminologies used here at bco. I should educate myself
I have also learned so far that whatever treatment plan you choose you need to consider not just the grade, and all, but your overall health, other health issues and individualize your plan to the best recovery or quality of life you can do or live with.
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AA - is it possible you weren't even tested for HER2 back then - it seems it has only been common practice since 2005 according to a website I found in the UK.
I also found this article which indicated not everyone is being tested:
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Hi Eve
Hi Kaara: I just asked my family doctor yesterday if i could have Metformin, he said he would prescribe it for me....so Im really interested too. Where is the side effects thread?..He said it was pretty harmless, so is happy to prescribe....now that it is actually an option, I have to find out as much as i can, but im slightly excited to give it a go.
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Until recently, the most common grading systems used in the United States were the original Scarff-Bloom-Richardson (SBR) system as described above and the Black method which emphasizes nuclear grading and excludes consideration of tubules as a criteria (9). In Europe, the Elston-Ellis modification of the SBR grading system (Nottingham grading system) is preferred and is becoming increasingly popular in the US (7). This modification provides somewhat more objective criteria for the three component elements of grading and specifically addresses mitosis counting in a more rigorous fashion (4). For example hyperchromatic nuclei and apoptotic cells which are counted in the original SBR system are excluded in the Elston-Ellis modification and the area being assessed is specifically defined in square millimeters. These modifications have enhanced reproducibility of grading among pathologists and to a considerable extent have fostered acceptance of grading by clinicians (7,10-20). An excellent historical discussion of grading systems can be found in Elston and Ellis (17).
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Alaska: though Im far less educated and technical than you and others here too, I have had the same thoughts this last year. Why does each new potential treatment for us have to be given with chemotherapy, I suppose it is their ethical dilemma of not witholding chemo (a proven treatment) from patients, but sometimes i wonder if the efficacy of a new treatment is undermined by the old chemo thing. I think some women at stage IV are able to talk their oncs into receiving a trial drug without chemo, (and some re herceptin) but its hard going to have that happen.0
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Have you ever thought that in lab testing Herceptin worked better with chemo?
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Hi susieq58,
Testing for HER2 was not standard at the time because the trials hadn't yet come to conclusion for trastuzumab at that time. But my tumor was tested at the time of surgery. What plays the devil with finding out the results is that the other testing (ER, PR, etc.) is done fairly quickly but the HER2 testing takes a few days longer. My surgeon provided me with the immediate report on all my other characteristics but was waiting for the HER2 results and passed me on to the onc in the meantime. The onc had the results and was responsible for giving them to me and explaining them, but he preferred not to and did not.
Also -- Chemotherapy is important for higher stage tumors where there is significant tumor burden, or a higher likelihood of systemic spread because of having had a bigger tumor with more time to spread before removal.
In lab testing it wasn't demonstrated that Herceptin worked better with chemo, it was demonstrated that Herceptin with chemo worked better than chemo alone. They haven't bothered to check yet thoroughly on whether Herceptin alone works well enough for early stage bc that chemo isn't required. And a lot of patients get the psychological satisfaction of believing that they "hit it as hard as they could", regardless of whether they need it or not. So that keeps the system pumping out the chemo. That way the docs have "done everything they could" so it protects them even though no one knows whether it was really needed or not. That is the end result of having some success for some patients with chemotherapy. It makes it easy to continue to use it as the "standard treatment" for everything else to be compared to. Those who get it have no way of knowing whether it worked or not unless they happen to be neoadjuvant and it shrank a tumor for them. So a lot of patients get the psychological satisfaction of feeling safer, whether it did squat for them personally or not.
A.A.
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evebarry,
I think it is a good thing in a way that we are forced to become more familiar with the technical terminology and think that when you ask your questions, it helps others who have those questions.
Your situation is less common, so it is also one for which there are less clear or definite answers, despite the natural fear of cancer, and the idea that "hitting it as hard as possible" is "best". But I do think you have been able to explain (with the help of some others here) very well why you really do need to question the application of chemo for your situation.
The question of whether to do chemo is a very individual one depending on one's own feelings and diagnosis. What upsets me is that those who do question the need for it for their own situation are still not able to get an honest scientific answer based on trials that demonstrate the comparison between less toxic treatments and those using chemotherapy.
A.A.
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