Survivors who have used only alternative treatments
Comments
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sam,
you see the reason why AI is classified as endocrine theraphy is because it is working on the endocrine system, the complex world of hormones.. and yet it is being prescribed only by an ONCO, which I guess is fine, but I think they should still make a conscious effort to work with an endocrinologist..
in the same way that a surgeon, should talk to the radiologist and oncologist, to find out which possible combination is best.
sheila,
now I guess you are imposing that surgery is the first line of defense. when Dr. Jeff himself who is a professor/director of oncology, radiology and surgery is saying it may be ineffective for mestastatic breast cancer and that found a way to keep the tumour dormant.
why wait until the cancer spread and say surgery is not effective.. why not dont do it in the first place, if it is actually possible to keep the tumuor dormant, why disturb it in the first place?
you see a tumuor is a living organism, you poke it (biopsy) and the cells will be released to the blood stream this is the reason why after biopsy the surgeon will ask you to hurry and cut that tumuor at once.. because biopsy poked the tumuor already and has agitated it.. that it is possibily releasing the cancer cells through the lymph nodes already..
you all talk about clean margins and circulating cancer cells--which are all true,, how sure are you that the cutting process has really given you clear margins?
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sheila,
ive been to Sydney/Melbourne several times-- and yes Singapore is a very nice place enough for me to stay here for the last 11 years.. this is home for my 5 year old daughter..
please keep up with the diet, exercise and add to it internal healing as well.. I wish you well too.. glad that you are taking this with a light-hearted manner... stress is bad for all of us
by the way, I think it works well for you that you are based in Sydney, as there are more trustworthy sources of meat/dairy there.. not sure about the veggies/fruits though
it is also worth revisiting my question about blood vessels, proteins and enzymes helping the tumuor grow-- in terms of recurrence, we are trying to prevent the cancer cells to attach itself (again) to any tissue (hopefully not your critical organs)-- that they dont form new blood vessels to attach themselves to a tissue, and that they dont have enough supply of the kind of protein or hormone that they like to feed on to..
if you want to test if they are attaching themselves again to any organ, please try either termography or ultrasound first.. I think there is no harm doing this..
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sheila,
based on the Cochran databse, surgery was also not prescribed for a post-menopausal ER positive BC patient, however they still prescrived Chemo/RX and Tamoxifen. This is primary cancer and not mets..
I can tell you for sure, surgery is not the ONLY first line of defense. even conventional treatment supporter will tell you the same thing (again depending on the doctor you talk to).
anyway, most of the women here have undergone surgery, so am not sure if it is worth regressing and talking about it..
but I really would like to continue on the studies about Her2++ and ER+, including endocrine theraphy (both conventional and alternative/integrative), as well as enzyme theraphy (which seems to becoming conventional now too!! yehey!)
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I have a friend doing the milk thistle treatment. Her's is a recurrence after going all holistic first time around, I don't have reports yet on how the MT is going.
My naturopath said you'd have to consume about a brick's worth of turmeric to get the anti-cancer effect. Her feeling is, good health is one thing, fighting cancer, another. Anything strong enough to fight cancer becomes a medicine, with all its own issues. After all, Taxol is derived from the yew tree.
I found nutritional support incredible for managing chemo SEs, helping me regain my stamina (vitamin D, thank you!) and putting me in the driver's seat. And now, only time will tell.
I am intrigued with this idea that meat and dairy tax the body, thus taking valuable cancer-fighting power away from us. But now, protein seems more important to me than ever. I ramped up to 50+ grams a day, and what a difference. It is a pain in the patoot trying to do that vegan, I was unsuccessful.
Thermography is a long way off from becoming standard-of-care--many doctors believe it does not catch a lot of cancer as not all emit the kind of signal a thermography would pick up. There are no easy answers to screening, I currently am fighting for MRI and that's hardly risk free it appears.
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Surgery does not cause metastasis. Metastasis is a dynamic process between the cancer cells and the "accepting" tissue. If you held breast cancer cells in your hand, you would not get breast cancer mets in your hand. And I don't know about the Cochran tables but surgery is absolutely prescribed for post-menopausal er+ patients. I would add that especially in your mother's case, with the genetic mutation, the bilateral mastectomy was a wise way to go. I know of only two situations where they would not remove the primary tumor: (1) the patient is already stage IV, though this practice is changing and women with mets are increasingly having their primary tumor removed, (2) the patient is having neoadjuvant treatment and therefore trying to shrink the tumor before surgery.
I have a friend whose mother refused all conventional treatment including surgery and died of breast cancer. Her situation is extremely unusual as the vast majority of women, including those who don't pursue traditional adjuvant treatment, do choose to have their cancer removed surgically. I've been on these boards for years and I don't recall a single woman who chose to leave her tumor there while pursuing alt treatment.
Nanay, I did not intend to attack you personally. As I said, I admire your devotion to your mother. But you have posted at length here and this is a public discussion board and people will disagree with you. If you are strong enough in your opinions, that should be OK.
And I stand by what I wrote. I think you have expended an enormous amount of energy into this and, as I said, your devotion to your mother is amazing. But this energy you've expended has taken you in a billion different and confusing directions. You are taking single studies out of context and therefore missing the conclusions. You are ignoring other studies. You are garbling findings about hormones and proteins and negating expertise of physicians for reasons that don't make sense to me. (Trust me, I would rather have an oncologist treat my highly er+ cancer than an endocrinologist.) And while you say you are not trying to convince others to follow your mother's path, you are privately advising WOM. Frankly, the idea that you are substituting your judgment for that of your mother's physicians and advising others to follow suit, is alarming to me.
There are women on these boards who have made a very careful study of alt approaches and have used them to treat either early stage bc or, in conjunction with conventional treatment, more advanced cases. They have a coherent approach to diet, exercise and supplements and are also mindful of the fact that they take certain risks. I have enormous respect for them. And I know I will be strongly criticized for posting this. Fine. But with all the prior posts saying "atta girl" to you, I think a reality check i in order.
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With all due respect, I'm with Member. This thread is virtually impossible to follow at this point without substative study information, and that concerns me for future readers as what we are doing is creating a library for them.
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LtotheK,
so sad for your friend, recurrence usually dash all hopes, but did she go holistic with the support of a good doctor or did she do it by herself?
I will be glad to know more about her too...
again, am not asking for a pat in the back, in fact in reality more breast cancer fighters using the conventional weapon do get all the applaud and the rararah.. what with the Kromen website.. there are lots of women fighters there.. and I salute them too, including you..
being a BC patient and willing to live no matter the odds and fighting till the end.. is something to be acknowledged..
I salute you all-- I realized I have just spent almost 2 hours reading and posting... arggh! if there is nothing much I could do to make you change your mind.. well let us just use this thread to say hi and hello..
i guess we have come to a point that any side will not walk to the other side anyway..there is no point
will keep you updated if I can and have the time...if you really think I should go back to this thread even if I make you dizzy == email me trasia@live.com.sg
you must admit, I made this thread more interesting
hehehhelove you gals! keep fighting!
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MOC,
it seems I have to stay a little bit longer. most of the women in this thread live in developed countries which makes surgery affordable.
in non-developing countries such as the Philippines, women cannot even afford to get a computer or Internet access to post in this board. nor they are included in the statistics that you are depending on...
I can tell you for sure that I know at least 3 women personally, who did not opt for surgery at all because they cannot afford it, their breasts are black and blue the say of a papaya but still very much alive after 15 years...
I have never said I have done enough study to make a conclusion that alternative is the CURe. and even in my private messages to WOM told her the same thing.. she can vouch for it alter...
I am just answering her question, even my intro says the same.. my mother cannot be categorised as a SURVIVOR.. anyone who says she is a SURVIVOR is lying because CANCER has no cure YET..
probably no recurrence YET , but not CURED.
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LtotheK,
as ive said its fine if you are with MOC. again am not here to get a pat in the back --in fact I expected the worse..
actually in reality, BC fighters who use the conventional weapon do get the accolades and the rah rah rah, what with the KROMEN site..
but BC fighters using alt approach, naah they get sneered upon, laughed at or worse attacked. I am glad I do not get the worse (at least not yet).
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That is true, Nanay, I have met women in other countries exactly as you describe. And they do challenge the notion that these chemical treatments are effective. However, I feel pretty confident if you look at survival stats for US vs. other countries overall, you would find developed countries have longer lives with cancer. My dear friend in my favorite third-world country on the planet was Stage IV out of the gates,and doesn't even have access to AIs. Was it not "caught early"? That philosophy is subject to debate--some feel progression isn't the real issue. Could better screening have helped? Well, she was getting mammograms, but with older equipment.
All very complicated.
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Nanay, I just read that Cochrane report and it's for women over 70 (and are frail) and they said more would have progression with endocrine therapy than with surgery which is the opposite of what you said.
On this basis, primary endocrine therapy should only be offered to women with oestrogen receptor (ER) positive tumours who are unfit for, or who refuse surgery.
You seem to be misreading or misunderstanding a lot and your mother's life may depend on your interpretations. I suggest you read everything more slowly and then read again the next day to be sure you understand everything.
Your reliance on alkaline diets and enemas etc is worrying as these people are going against the general understanding of oncologists and biochemists. They don't have any proof their treatments work. The alkaline diet won't hurt but if your mother fails to take the recommended treatments then that could have bad results.
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MOC,
who said Surgery causes mets? you?
I did not say that, i said poking the tumuor releases the cancer cells to the blood stream, it is not classified mets yet, until it has formed blood vessels and attached it to the tissues/membranes-- I asked about correlation between protein, enzymes, blood vessels and hormones and you did not make an effort to answer properly.. you accused me of advising WOM privately!! I wish I did so you can be justified..But I did not.. you can ask her if I did... she was just airing her frustration.. thats all..
all your posts are very similar to the responses of the some of the doctors I asked.. dismissive, no empathy and always one sided.. no room for dialogue..I wish you can at least give me some room for dialogue, but you are dismissing it all together..
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It is absolutely not meant as an attack, Nanay.
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hi sheila,
you have to read my posts carefully and I think you are reading a different study..
my post compares the following treatment for a 70 year old post-menopausal woman who are unfit for or refuse surgery
1. treatment with endocrine theraphy with surgery
2. treatment with endocrine theraphy with no surgery
and the study says, it is better to treat with AI with no surgery for 70 yo post-menopuasal women who are unfit for surgery or refuse surgery
and again, I just used this study to prove that doctors provide different answers and that most oncologists and surgeons does not even sit in the same room to make this discussion.. they make their decision without consulting other doctors, who may provide them a different perspective or provide the missiing link... please revisit that original post, the last phrase in that original post was please read and let us discuss.. I did not in anyway, said that our decision to go ALT is based on that single study-- which you all keep bringing up..
when I brought up other issues such as blood vessels, proteins, enzymes and hormones, you said I am confused..
when all am saying is that your treatment plan must be carefully considered=== not leaving any pebbles unturned..
so that you know all the risks, issues and dependencies before making a decision.. I am trying to you give you a preview of our journey thats all.. and not promoting it..
if you can pick something good for you go ahead and pick it up, otherwise, dig deeper and I will commit to try to respond to your questions..not to convince you to do the same, but so that you will understand..
if still you do not understand.. its fine with me.. I cannot say I am the best communicator in town.
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Those women living with localized cancer in their breasts for 15 years most likely do not have HER2+ disease. I would also bet if they ever moved to northern latitudes, the vitamin D deprivation would kill them in 6 months without further treatment. Following that logic, Nanay, moving your mom to the equator from the Philippines may have been a very good move.
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Nanay, they either refuse surgery or are unfit. Precisely. It is recommended to have surgery but over that age they may be too frail.
You still don't understand it even though you have read it and typed it out. That's the point, that you are unable to understand something that's clearly said yet you are making life or death decisions for your mother based on your misunderstandings.
I too admire your dedication but you are taking on too much. Maybe you can find someone who understands medicine and research who can help you make sense of these studies. I'm lost for words.
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hi heidi
thats interesting, what is it about Vit D and the equator?
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heidihill,
you are probably correct, because, Her2+ testing requires that you take a breast tissue first, and again these women may not even afford a Her2+ testing such as the FISH Test..
but it you can not deny that they could also be He2+ but not diagnosed since as I said they cannot afford the test or even refuse that their breasts be touched (due to cultural issues)..
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You've given me the wrong link.
The aim of this systematic review was to compare AIs to other endocrine therapy in the treatment of advanced (metastatic) breast cancer.
This is not about surgery. Do you have any others to support your view?
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sheila,
haaaa! its so hard to find it.. anyway! I will try! it seems we are not going beyond this surgery issue as all of you have had surgery anyway, who would want to be told that it COULD be a wrong move.
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what am trying to say is, the surgeon did not inform us that Primary endocrine theraphy is permissible and that if my mother refused surgery it is permissible,, may not be 100% effective but it is permissible
the thing is, he did not even talk about endocrine theraphy at all, its like going to a restaurant and the resto offered you only steak and did not tell you that there is a vegetarian menu..
and that instant you thought ok since this is the only food avaiable - I will eat steak.. thats the point am making here
the menu was not explained to us in detail at the time she is about to go for surgery..
anyway. Sheila to pacify you-- my mother had bilateral mastectomy before even we can say no.
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The conclusion of this study was that women who had AIs in place of surgery did worse than women who had surgery. But if they cannot have surgery, an AI is better than nothing. I don't know what your point is. That the surgeon failed to tell you that your mother -- who is only 60 and able to handle surgery just fine -- could have pursued a different approach that has a worse outcome?
My surgeon did not tell me, at the age of 42, that I could have had an AI instead of surgery. I don't see this as a failing on his part.
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you see that as not a failing on his part. good for you! but for us it did!
turned out that she survived the surgery but she almost did not survive it. and she detested it and claimed the worst experience of her life..
she thought that going for surgery is just like removing a tooth,, but apparently it is not, it is like a major part of her being has been removed..
and many other issues, that now am thinking twice to post here coz you will all gang up on me if say it so plainly.. do you really want to know??
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Nanay, it's about your ability to make these life or death decisions. I've seen you make many basic errors in reading posts on this thread and that may be due to language difficulties though I can understand you very well so you seem to be able to express yourself well in English.
Nanay, these are your words I am quoting.
and the study says, it is better to treat with AI with no surgery for 70 yo post-menopuasal women who are unfit for surgery or refuse surgery.
Yet you then say that surgery is not good for all primary BC. If someone is unfit for surgery then the AI's are the second and inferior choice. Can't you see your misinterpretation?
I'm not trying to put you down, please believe me. You have so much to deal with, I feel for you. I feel sad for you and your mother.
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The sun's rays are as direct as they can get at the equator. The further from the equator you are the more exposure you need to the sun to generate vitamin D.
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alright let us open the gates for surgery.. my mother being unfit for surgery or could have refused surgery if she knew that she could actually refuse surgery...is just one of the many issues.. and I agree that I may not have the best ability to make a decision for you sheila, because you are not my mom, you are not related to me at all..
but if mothers know best for their daughters, dont you think it also works in reverse?
for whatever it is worth,
1. my mother felt she was insulted and harassed during the surgery
2. she felt that half of her life has been removed, the breast that nourished her children was removed.. she was depressed after that surgery
3. she almost did not wake up post-surgery (whether it is vertigo or overdose of GA) - we dont care all I know is that all aggresive medical interventions have more of the risk that she can handle
4. back to my previous post-- up to what extent will you cut a part of your body when there is a tumuor? if it the tumuor goes into the bone-- you will cut your bone? if it goes to the kidney-- will you cut? up to what extent?
5. if it is actually possible to make a tumuor dormant (after all these years) and then treat, then why does it has always have to be the FIRST line of defense..
6. surgery is not a comfortable option for everybody, which can be a personal/emotional/cultural issue
7. surgery does not guarantee 100% recurrence free life.. whats the point of risking all possible complications such as comatose, overdose of GA
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heidi,
in that sense, probably it helps that my mom, loves to work in her vegetable garden and walk up the hill behind our house
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Nanay, the study you linked says:
One study suggested that those undergoing surgery suffered more psychosocial morbidity at three months postsurgery, although this difference had disappeared by two years.
So they are saying it may be harder emotionally for a while after surgery at that age. It's important to support your mother emotionally as losing a part of ourselves that defines our femininity can be hard. I'm 20 months out and it's still hard every day. But that is still easier than getting mets with all the fear and pain and loss of life.
Your mother will adjust in time and she did survive the surgery despite the problems.
Now it's past my bedtime and it must be nearly the same time in Singapore so I'll say good night and wish you and your mother well.
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