Survivors who have used only alternative treatments
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LtotheK,
In my introduction-- my first few words are "My 60 year old mother"-- you probably have missed that, I will try reflecting my mother's age in my signature as well.
Anyway, I think a 60 year old or a 75 year old has the right to live longer years as much as a 36 year old woman does. It is not right to say, that my mother can take alternative since she is old anyway and she can take the greater risk. its a misconception. Actually our decision to be on alternative method, is because it poses lesser risk to her health - because of her age, she may not be able to sustain chemo/radiation as her immunity is lower than that of a 36 year old. Am also not saying that a 36 year old is in a better position to take chemo/radiation combo just because she is younger.
One size does not fit all.. age is not the only deciding factor -- the uniqueness of your body's chemistry is an indication that we cannot just belong to stages/categories, because not all 60 year old stage 2B IDC Grade 3 ER+/PR- Her2+++ patients will have the same body chemistry or level of tolerance to conventional medicine.
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wornoutmom,
I sent you a PM, will "type" later, gtg for lunch
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hi nerida,
backtracked to some of your posts.. my mother (and myself) went through the same situation you are having with your onc -- we purchased 5 months supply of tamoxifen while he was trying to persuade us in taking the chemo/rads treatment plan -- it has been a year since we last saw him and every now and then their administrative staff will call and ask are you really sure you are not going to take chemo/rads treatment plan. and everytime we said yes, we did not even attempted to explain why-- because we know their standard answer anyway,
again, I am not advicing you to do the same withouth seeing anothe specialists who could prescribe you an alternative treatment plan...
I undestand why you are experiencing psot traumatic shock, am not DX with BC but I cannot sleep just like my mother during the first few months of her DX. it seems I was also DX with BC. its a scary thought knowing she have BRCA2 gene mutation-- I might likely inherit it as well.. for now, I just want to worry about my mother and hope I can follow her regimen as faithfully as she does as preventive theraphy for myself..
yes, there is no stats for survival without treatment or even with alternative treatment, as no one will sponsor the clinical trials that will produce those stats.
however, there are some sites wherein clinical trials are conducted to compare someone who has taken tamoxifen and someone who does not -- I will research for you and post here later...
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Dearest Wornoutmom, I have not posted here since I gave my story about a dear friend's friend. I have just been reading and learning. First of all, you are such a brave and wonderful young woman. I admire the way you have researched both the alternative and conventional treatments. You have been so patient and understanding with everyone's posts. When I was diagnosed, I never questioned doing anything else but the conventional treatments. Now, I am turning toward the natural approach to keep me cancer free. I see a nutrionist, get massages, use essential oils, etc. But I still take aromasin. I think what I am saying is why not combine both approaches. However, if you have made your decision already, I admire your commitment and tenacity. You are one amazing young lady who is taking an active and committed role in your treatment and in your life. I know that you will come out on top, because you believe in yourself and you are committed to beating this. Your positive attitude will see you through this, and if you don't mind, I will lift you up daily in prayer. I could not have gotten through this journey without my faith and prayers. God bless you, and I wish only the very best for you, Kathy
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The original post states:
"I have an appointment with a ND to check into the alternatives as I am only 36 with little kids and feel the harm this will do to my body will be worse than the cancer."
Not sure where things went differently here, but THAT is the post I'm replying to for future readers, as well as the original poster.
For those of us diagnosed under 40, the issue is, the statistics don't mostly include us, and we are asked to look at older womens' stats to make our treatment choices. This is dangerous, the Young Survivors Coalition is working hard to show the fact that the concerns are entirely different.
For future young readers, check out Young Survivors.
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I don't think anyone was saying your mother doesn't have the right to live a long life. (Hm . . . lots of defensive here.) But age absolutely matters. Breast cancer is a more aggressive disease in younger women, for example. Also, medications affect older women differently; someone who is older may have a harder time tolerating the meds so the cost-benefit analysis might be different. Also, breast cancer is one of those cancers that can recur after a long time and for that reason the younger you are, the likelier you are to have a recurrence (the more years ahead of you means the more years in which you can have a recurrence.)
My mother was diagnosed with brain cancer at the age of 80. And the surgeon was very explicit about approaching her case differently than he would a 32 year-old. I wouldn't have wanted it any other way.
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I just wanted to stop in for a minute and thank Nanay for her informative posts. While I am a proponent of primarily Conventional treatment, complimented by Alternative recommendations- I just wanted to say that we could all learn alot from Nanay's posts. Not just of the content- but in the manner she posted them. She was just stating the information she has gathered- and in no means was trying to convince anyone that her "way" is the right "way". We have been shown, time and time again, on these boards- that that is a very difficult line to walk!
So- thank you Nanay. I will look forward to your posts, and I wish your Mom continued good health!
Edited to correct a typo
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Wornoutmom: I am sorry you are having to deal with this. I don't know a lot about triple positive, since I am triple negative, but I was wondering if you could get a second opinion on your pathology report? There are two different ways to test for HER2+, one is the FISH, I think it is the more reliable.
For what it's worth, I am one of those weirdos that liked chemo. I think the term "chemotherapy" sounds pretty scary, suggests toxic chemicals, but one of my treatments (adriamycin) is actually an antibiotic.
Yeah, a lot of people will tell you chemo saves lives, and I believe that. But it's no guarantee. I am wondering if any there are any people on the Her2+ thread that skipped chemo? You might check there.
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Lynn Herceptin hasn't been standard treatment for every long especially for early stage. There are a few women that are on the HER2+ threads that didn't even have a choice and doing fine. Then there are some that had Herceptin and some that didn't that are stage IV after being an earlier stage. Nothing is a guarantee.0
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Nanay, you write:
what does diet have to do with this?
meat (chicken, beef, pork) are usually fed with growth hormones, which happened to be Estrogen. If you eat meat, you are adding more estrogen into your body, therefore the more estrogen needs to either blocked by Tamoxifen or need to be excreted from your body (overtaxing yourself)..
if you eat organic veggies/fruits -- less garbage in -- less garbage out.. makes for an efficient mechanism isn't it?
SO VEGgIES/FRUIT is not a cure-- but it faciliates garbage disposal...
Tim writes:
Growth hormone is not allowed to be given to livestock in Canada, and I suspect the U.S.
Growth hormone is not estrogen or even related to it. That I'm certain of.
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Timothy- I can't say whether growth hormones increase estrogen, though I always assumed it might. I am happy to hear that they do not allow them in Canada. Here in the US, they certainly allow it for dairy cattle (so they can remain artificially pregnant I believe) . They then produce double the amount of milk. They also are not required to label it as an ingredient as the FDA says the nutrition content is the same. Perhaps the nutrition, but what about hormones? I can't help but believe that these kinds of hormones can not be good for estrogen+ BC women. I just recently read that they do not allow any hormones in chickens, though I believe they do in other livestock. Many Oncs are telling BC women to buy organic dairy.
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I wish they wouldn't use any hormones, antibiotics or drugs whatsoever in livestock or dairy cattle. No one really knows what it does to us. I just wanted to clear up the misconception that growth hormone was estrogen. Estrogen is a steroidal sex hormone that affects all mammals, growth hormone is a complex peptide (protein) and specific to a given animal, that's why they call the human version, human growth hormone. Neither should be added to food animals.
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hi timothy,
thanks for the correction and I stand corrected. Yes, growth hormone and estrogen are not the same. I was trying to simplify so its easier to digest for the readers. However, it seems I have oversimplified to the point of inaccuracy.
There are studies (you can google it) that shows a correlation between GH and estrogen, as GH actually facilitates the release of environmental estrogen..
focusing on diet again, if estrogen receptors is a type of protein, and you are feeding on protein (meat/dairy)--- then your body (digestive enzymes) will work hard first in digesting the meat/poultry you ate. If you eat less protein then your body can focus on (hopefully) digesting other proteins (please also take note that different digestive enzymes are used to digest different proteins)..inculding the estrogen receptors coating your cancer cells-- therefore controlling the supply of food for these cells.
thanks for your respectful correction again-- and I welcome a friendly dialogue..
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More about estrogen and how my mother "digests/process/excrete/metabolizes" estrogen in her body (based on her Hormone Profile)
Turned out that she is metabolizing estrogen towards the 16OH metabolite (which is the bad estrogen-- yes, there is bad/good estrogen in the same way there is good/bad bacteria)...so she was prescribed something that will help her metabolize estrogen towards the good estrogen metabolite,
the idea is not to get rid of all estrogen but to support the liver/kidney so that is excretes the bad estrogen.
The good estrogen metabolite is 2OH. It turned out that her ratio of 2OH to 16OH is 0.55 way below the ideal range of 2.
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hi lago, lyn and wom,
my nanay is also Her2 positive. I will share our findings later once we are done with the ER, Estrogen, Growth Hormone, protein , enzyme correlation.
It has been a year since my mother and I have studied these correlations and I like the discussions in this thread as it forces me to review and refresh myself on why we have decided towards my mother's treatment plan.
What I can assure you is that our decision was carefully made with advice from both conventional and alternative doctors...as other well meaning friends and relatives.. please take note that there might be some typo/grammatical errors and oversight.. as I am always in a hurry (my daughter competes with me with time in front of the computer)..if I would not be able to post in the next few days, you can go ahead and google the correlation between ER, estrogen, protein, enzymes and how our digestive system metabolizes estrogen.
always verify the source by the way-- always think about who is sponsoring the studies and the clinical trials that produced those studies. always think about the motivation of the people sponsoring or taking time out of their busy lives to conduct these studies.
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Just so you know Designer Mom, all of us are female mammals. So for Dairy Cattle, the deal is produce calf, give milk. Hormones enhance milk production but don't keep dairy cattle "artificially pregnant". I don't agree with giving dairy cattle hormones BTW, even if they don't affect humans. Just not a nice thing to do in terms of udder strain, pain.
The normal plan is to produce one calf per year. Dairy cattle have a gestation period of nine months as do humans.
The cycle is to produce milk for 10 months, not give milk in anticipation of the next calf, and then produce milk for another 10 months.
Girl calves (heifers) are raised to replace the older cows in the dairy herd, with most male calves being used for meat.
So far, cows have not been kept in perpetual milk production via hormones.
On antibiotics......cows need them for the same reasons we do. So I don't entirely agree with "organic" which means you kill, as opposed to treating, a cow who has an infected toenail or mastitis. Fortunately, most get sold to conventional herds where they get to live out a productive life.
I find it amazing, coming from a dairy farming family, how many people (even doctors) fail to realize that all of us female mammals are more alike than different.
Thought it was time for a bit of "real world" vs Whole Paycheck mythology here.
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Sr breastcancersurvivor I am so sorry they tests failed you. I see alot of errors in mammograms. I only had one and that was because I had the lump. I do feel your pain though as when you do the right thing and it is missed. I spent 3 years being told I had a clogged duct but the whole time it was BC. Very frustrating!! Today I also found out that again my pathology had an error and in fact I am T1 not T2 as the report said... How many mistakes can one group make on one person.
On the talk of hormones I have to say please refer to my hippie statement...lol Until people really start fighting we will continue to be harmed. I am really surprised more isn't coming of the antibiotics though as the new heath concern is the overperscription of them and we are consuming meat that contains them. They say now that they were being overperscibed and that was counter effective. But yet our bodies ar getting them via the meat we consume? Makes you wonder.
You know I keep hearing people say why not do both. How long ago would doing both be seen as wrong. Many doctors would out right tell you not to supplement etc as it might be harmful due to interaction etc. But more and more we are learning the benefits. It is as if people never look back and say you know they were wrong about that so why am I going to just feet first into this. I guess for me having kids 10 years apart and going in with the second one to have the same doctors office look at me in horror when I suggested things that they had told me to do as if I was out to put my child in danger was a real eye opener. Now one or two things okay but it was almost everything but they looked me in the face 10 years prior and promised me it was totally safe. Talked about studies etc to confirm this. We are surrounded by evidence and yet most don't question it. Watch TV for a little and see the onslaught of banned or in the process of a lawsuit drugs that have harmed people. It just reminds me that medicine is a science not the absolute answer that I assumed it to be before. Thus leading to the reseracher you see now
I did read a hopeful article of the collaboration of the two sides...yippee I have no idea why this is the only site that I can't copy and paste on but the article was showing the huge benefit of vitamin C for chemo/rad patient side effect benefits. It also reduces the risks posed by these agents. It is on www.lef.org the title is peer reviewed publication supporting intravenous vitamin C for cancer patients.
For those who recall this revolation came over 30 years ago and I believe it was the Mayo clinic who discredited the man who discovered the benefits of vitamin C. Funny part is they talk about true studies and they used oral vitamin c instead of IV. Not even close to being processed identically.
Clair you mentioned female mammels being more a like than different and it brought to mind something I read. For me after BC was the first time I discovered that we had several different types of estrogen many of which have yet to be identified. I just knew we had estrogen..lol I read that birth control for instance was taken from the estrogen of horses ( I think that was the animal) but that they produce a different kind of estrogen. Wonder if the estrogen types and possible discrepencies have any baring on the role of digesting such estrogens and how our bodies use them?
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somebody asked about stats on BC women who have had Tamox and those who did not.. I think before we even go to the stats, we must understand this matrix first.. this also correlates to some of the posts which says we cannot treat a 36 yo (Premenopause woman) to a 60 yo (postmenopause) -- which is correct... this is one of the scenarios which depicts the reasons why one size does not fit all
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my mother who is 60 years old is under this grid (ER+ post menopausal -- high risk) so the conventional standard of care based on the oncologist is Tamox + Chemo + Radiation.
which we refused... for so many other reasons. if you are interested to know why, let me know.
Now in terms of your question about stats... am not sure which grids/diagnosis you would like to compare.. because you need to compare oranges to oranges and apples to apples.
For us, we referred to the Cochrane database (an online library of clinical trials) google Cochrane database -- then within the Cochrane site Search for "Aromatase inhibitors for treatment of advanced breast cancer for postmenopausal woemn" -- this is the closest that I can get to based on my mother's profile..read through and learn ..including toxicity..and quality of life (QoL) reported by clinicians and not by the patients themselves. let me know your thoughts.. then we can discuss.
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wom,
it seems we are long lost sisters born in different worlds.. I agree with you in most points.. and I am glad you have not totally given up hope in some of our well meaning conventional doctors and yet have your eyes wide open to possibilities that maybe somehow they will also have the motivation to think outside of the box and use their good intentions fully --in a courageous non-threating, subtle and respectful way.
because if you really have something to say that is really important that you do need people to listen to you-- you do not want to agitate them so much so that they will just turn away and never listen at all.
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Nanay, I know it's been some time since you researched these things, but I just wanted to point out that Tamoxifen is not an aromatase inhibitor (AI). Femara, which is what I'm taking, is an AI. They are both for ER+ disease. I also had chemo and Zometa, a mastectomy and radiation therapy. The works.
I truly admire what you have done for your mother and would even venture to say that your support may have been and continue to be a major factor in her recovery.
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wornoutmom: I advise you to go to the HER2 page and read some of the posts. One DH posted there about his 32 year old wife - Stage IV from the outset - she is now NED thanks to herceptin. She had a large tumour on her liver and now it's gone - this is an absolute miracle. I also have a friend on here who was stage IV (Liver mets) who is now NED also thanks to herceptin. Please consider doing the best for your family and you and accept the treatment. HER2+ve BC is not something to be messed with. I was only Stage 1 but there was no way I would have refused the offered treatment given the aggressiveness of this type of bc.0
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Also, be careful about relying on studies of AIs in women with advanced bc. That means metastatic and your mother does not have metastatic bc. I'm not sure why this is the closest to your mother's profile. A woman with metastatic disease may take these drugs for longer than us early stagers (I know a woman whose stage IV bc was kept stable for way more than 5 years on tamoxifen) and they would most likely put up with side effects longer than we would if the drugs are working because the alternative is chemo.
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thanks for pointing out that Tamox is not AI.. I have been revieweing all my studies and yes, we cannot completely base our decisions on any of the clinicial trials including this study of AI for metastatic BC for post-menopausal women.
If you read the abstract and also the plain word summary, even this clinical trial cannot make an absolute conclusion to make a call if using AI or not AI will on advanced bc is better than one or the other because of the uniqueness of the profile of the women they chose for their controlled study.
despite the controlled study-- they still found out that although they have selected women who are supposed to be in the same category (advanced bc, mets, post-menopausal)-- they still cannot make an absolute conclusion because each case is unique..this is the point I am trying to drive in to...
in the end they even have to say--- all the reports regarding Quality of Life (which is subjective) was provided by the clinicians and not by the patients themselves. Quality of Life depends on individuals.. Toxicity levels though can be measured.. but still after the study they still cannot make an absolute conclusion.
There are still more clinical studies in the Cochrane database which compares AI to tamox, all possible combinations... actually you can spend a whole month and still would not be finished..
but all boils down to one thing.. no matter how hard they find women in the same category by age, grade, stage. grade, mets/no mets, --- still they cannot really make comparisons because even oranges have different varieties,, apples also have different varieties..
One size does not fit all.. but still you can make a choice..
so member of the club I definitely agree with you... there can never be a profile which would be exactly the same as my mother.. so why would I depend on these clinical trials for decision making, instead of finding the best diagnostic test-- finding the root cause-- one step at a time..instead of taking treatment plans designed as if you are taking an order from Macdonalds' menu (Kids Meal for Kids-- Adults Meal for Adults)...
but then there are people who wants to take the easy way, take the value meal and not ala carte-- to each his own..
we prefer ala carte-- no matter how tedious the process is..am so glad that our Endocrinologist also prefer to do it ala carte..
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my mother's diagnostic reports was taken last year, at that point, 3 out 25 lymph nodes are tested positive with cancer cells. though no traces in her bones, brain, heart.. it is still considered an agrressive cancer because it is PR- and Her2+++ with BRCA 2 gene mutation... this is the reason why the National Cancer Center, kept calling us to reconsider our position as they consider this as agressive cancer..
as an experienced Project Manager, I usually study all Risks and assumptions as well as the dependencies, a few months, even years ahead..
thats why I even went as far as studying more advanced cancer.. but then I realized I have a 5 year old daughter and I have run out of funds.. so have to go back to work.. and stop my impassioned search for the unsearchable answer..
I thought maybe I should dedicate my life to this cause.. and not only help my mother but also other women in the same plight.. until I found a lady about the same age, who was so consumed by her parents' cancer and saw her dedicated her life to the cause of finding out why and how, sacrificing her own personal life.. in the end she gave up-- she found out that there is still life beyond cancer.
so my mother and I made a pact, to enjoy each and every day, relish all the knowledge we got, to prepare us for what comes ahead, take the less travelled path... take the treatment plan which to us will give her a better Quality of Life..and hope it will also mean-- quantity of life (by the number of years we can extend her life to...
if we took the chemo/Rx plan, I guess we would still be in the same mindset.. we will still respect other people's choices.. am just sharing our journey, because that is the question of the author of this thread..
but time and again, I have repeated this-- and even sent a Private Message to WOM, not to follow this regimen, just because it is working for us-- but because she made careful study, seen the right doctors.. selected the wheat from the chaf, rallied for support from her husband and then decide as a team-- this is the Weapon we are going to use to fight this battle and stick with it..while making sure that her children is also learning how to take care of themselves, because this is not an individual's battler it is a family's battle- it runs in the family..
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Nanay: I am with you I believe ala carte is best.........
That one-size-fits-all philosophy is, in my opinion, the reason why science has made so little progress in the treatment of cancer in general, and breast cancer in particular, though I must acknowledge that we have made some headway in differentiating tumors and being at least able to put them in categories (ER+ or ER- for instance).
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yazmin,
I definitely agree, and not just finding out difference between ER+ / ER- and PR+ /PR-
but also understanding why certain cancers are resistant to Chemo/Rx
this is the reason why they came up with the Her2 + / Her2 - differentiation as well..
in 2000, you would not hear those terms such as Her2 or BRCA because these tests were not available yet or not widely known yet..
but now we also have tests for Hormonal Profile/Metabolism, not widely known but it can further classify your estrogen as either 2OH or 16OH
yes certainly making progress.. but still no CURE..
I am one to say that I am so glad that we have SCiENCE, we have intelligent and passionate doctors/acientists who would spend their life doing this.. earn a living from it.. but more approaciation to those who spend their life doing the same, for nothing..
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Nannay, I think you misunderstood my last post or maybe I wasn't clear. I wasn't saying you can't draw conclusions from a study of women with advanced bc -- all our treatment protocols are first tested in this group. I was only responding to what i thought were conclusions you drew about quality of life from this study and then applied to your mother's situation, which is different in terms of quality of life issues. And I don't think its there are no studies about women in your mother's situation. Your mother's situation: post-menopausal, er+ and her2+, has been studied quite a bit.
Yazmin, we could go back and forth about this idea that there has been no progress against bc. Not enough progress, but the data is clear that survival rates have gone up. In particular women with her+ bc, which seems to be one of the focuses of this thread, now have herceptin which has been a wonder drug for women facing what was once the most aggressive form of bc. I was diagnosed back in those days and that was the most frightening form of bc to have. We never heard talk of triple negative because it was the her2 cancer that was so scary. Now that is not the case because of herceptin.
I'm going to go out on a limb again here because Nanay, you are getting lots of pats on the back for your approach. I admire your dedication to your mother, she is truly blessed to have a daughter like you. But if it were my mom, with that aggressive a cancer, i would have urged the conventional -- tested by SCIENCE (as you say) -- treatments, unless there was a reason in her particular case, why she would have a tough time tolerating it. 60 is not old and she will have a beautiful life ahead of her.
I also hope she has explored having her ovaries removed. As I'm sure you know, she is at high risk for ovarian cancer and that is not a cancer to be messed with.
Finally, I find it somewhat insulting that you would say those of us who took advantage of everything medical science has to offer took "the easy way." There was nothing easy about my cancer treatment but I had two young children when I was diagnosed and my goal was to do everything possible to live to raise them all the way up. It really is a misconception to say that mainstream medicine for bc is one size fits all. I know lots of women who have had bc and not a one has had the same treatment protocol as me. Not a one. And I'm including younger women, node positive women, er+ women, everything you se in my tagline. We've all had different treatments based on our individual characteristics.
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why is it important to know the worst case, or studying the WhaT IF's before making a decision is this.. if I had read this study prior to my mother's surgery, I would probably have reconsidered surgery-- because my mother has vertigo-- I was not aware that General Anesthestia (used for mastectomy) has contraindication for vertigo (there is a risk that she will not wake up from GA-- therefore comatose)-- thank God she woke up 12 hours post-op, instead of the normal 4 hours post-op.
However, if I did not let FEAR take hold of me, and made careful decision before saying yes to surgery, we may have refused surgery as well..
here is another study from the same database (Cochran)
Given: post-menopausal women who are ER positive who are unfit for surgery or refused to go for surgery
Plain word summary:
It is better to treat elderly women who are ER positive with primary endocrine theraphy (that is endocrine theraphy alone) without surgery. However, younger women should take both endocrine theraphy plus surgery.
My dissappointment is this:: why did the surgeon made a decision for us? instead of asking us to see an endocrinologist first? why did the surgeon did not talk to the endocrinologist or the medical oncologist- to find out the best possible combination of treatments?
This is purely conventional medicine, but still I cannot find a collaborative effort amongs these conventional doctors to find the best possible combination... instead they all prescribe the only treatment that they know of which is to cut if you are surgeon, poison if you are a medical oncolgist, burn it if you are a radiologist..
removing the endocrinologist in the equation-- they have left a massive gap..
go ahead and search the Cochran database, there are studies in all possible combinations-- but each one of them contradicts each other..
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member of the club,
I am not here to get a pat on the back.. in fact am not getting any from you
.. if I need a pat in the back-- I would just play with my daughter and instantly get a warm hug.anyways, I am really sorry, I did not mean to say that conventional approach is easy. the value meal approach that am talking about applies not only for conventional but also for alternative.. take for example the Budwig diet--- which is supposed to be taken on its own.. its also a value meal approach.. I would not promote it or even ask my mother to do it without careful study.
again, am sorry, in every way, I understand what you are going through..I will repeat it again, we are in the same battle.. just using different weapons.
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