Data On Alternative Vs Conventional Treatment?

Yes, I concur. Breastcancer.org has been the greatest tool for all of us.

The data, oh the data!

Having lived my whole life with a rare, incurable, barely treatable illness, I've wandered far from the path of expecting, wanting or needing data to support my care decisions. After nearly 60 years in this body, I trust my body's wisdom/intuition as the greatest authority on how I can live well.

When I was diagnosed with breast cancer 25 years ago, I actually celebrated!

My previous medical research into my genetic condition had yielded only anecdotes, most of them depressing and distressing.

Breast cancer - well, I knew women who'd had it and could actually engage experts, statistics and research to plot my course.

In 1990, what seemed like a very good chance of cure, bilateral mastectomies with no reconstruction, quickly turned to recurrence and I've seemed to remain in the 1% of losers and winners ever since.

My course is unique and for a long time, what I cared most about was how to live as long and well as possible.

Now that I'm on hospice, what I care most about is living well by contributing to the greater good of the world - human, natural and divine.

Is there anyone here who can say that their case of breast cancer is absolutely, statistically average? That they've followed all the proven treatments and received all the proven benefits without any of the harms? That there's a magic bullet or shield in conventional, complementary, integrative or alternative approaches?

I've yet to meet that person!

I welcome anecdotes, because they tell me about the human spirit, the nature of human existence, choices that did or didn't work for others. I welcome stories, because I am human and stories feed my sense of possibility and it doesn't matter to me whether the teller lost or won, but how they lived and faced their challenges.

It's all an exploration!

longtermsurvivor,

I agree that none of us is a statistical average, nor do statistics tell any one person's story. However, in making informed treatment decisions, data does provide a rational jumping off point for me and many others. I realize that scientific data and research are not important to some. Of course no one can say that they have followed proven tx, conventional, and that they have received all the benefits. None of the conventional treatments promise anything but you know that going in to it. If treatment XYZ has data that says 75% of those who follow it will be cured, you have to understand that 25% won't be. Additionally, you have no way of knowing which side you will fall on, but at least you know that when you are in the decision making process. I'd like to see the same for alt tx. Just the way my brain works 😊. I need double blind, randomized, replicable data. I'm an academic through and through (by nature and profession).

Lily,

I'm going to try to read the Moss report again. I tried to read it late at night, which never works for me.

Hi Barbe,

It sounds like you're quickly coming into alignment with your new diagnosis!

May you continue to heed your inner wisdom, do your research and rely on trusted caregivers.

I used to echo the sentiment, "lower stages of breast cancer are a sprint, mets are a marathon."

Now, I think mets is an obstacle course with all new and unfamiliar obstacles that we learn by loping along the course.

If we have the breathing room, we can look back at what we might have done differently, but forgiveness (self-forgiveness) seems more appropriate in evaluating our past choices.

btw, my member name long term survivor was chosen tongue-in-cheek. I've never done pink or survivorship or rah-rah breast cancer. Yet, I've survived a very long time with advanced breast cancer and hope to share some of what I've learned from my amble along this obstacle course.

Also, I too had bilateral mastectomies without reconstruction or prostheses. That was a long 25 years ago (cancer years are like dog years, 7:1).

Welcome and hope to keep in touch, Barbe, Stephanie

Moss is not a Doctor but he is a medical researcher with decades of experience.He has been published in THE Lancet in the UK which is the publication for medics.    In his reports he simply analyzes each treatment and the treatment center and will say if alternatives are contra indicated.  He does not promote any alternative treatments that I am aware of but he does investigate them and believe in INTEGRATIVE approaches to cáncer treatment.  

I had to pay for the report but it is hundreds of pages long and very detailed.  I was in two minds at first but once I started reading I understood why it cost so much.  Maybe the previous report is available for free, but the latest ones always need to be paid for as he is independent. 

It was a conventional medical oncologist who suggested I access his reports as they are independent, a backer can affect Independence.......but I felt lie you initially, however as I was desperate to find out about treatment options other than chemo for me I paid up...and got the existing report plus the one that was updated a year later for the one price

Well, this is the first I've heard about Ralph Moss. Initially, I was disturbed by the bio you posted, kayb, where Moss uses the euphenism "scientific communications" for letters to the editor. These letters normally fall into the category, "opinion piece," not "article." On the other hand, in journals such as those listed above, these pieces are often commissioned by the publication. Their primary role is to print actual research, but they also have a need to present supplementary information that will help place the published article in a larger context. Whether these letters are specifically invited or not, their very appearance in these journals does indicated a significant credibility for their author.

I then followed your link. He calls himself a cancer advisor, but his expertise seems to be in reporting on cancer issues. I'm thinking he is journalist, an in-depth reporter with a truly extensive background--and interest--in his field. My guess is that he would indeed be an excellent resource for information on both the pro's and the con's (journalists need to present both sides of any story) for various treatments and protocols. He does offer telephone consultations.

I read a few of the blogs on his site, and found them informative, but not particularly in-depth. I'm thinking his book might be a compendium of many of his articles, covering a really huge swath of both traditional and alternative remedies. As such, I'd think it worth reading, but yikes! The price! Couldn't a nice publisher give him a huge advance and then market it for the masses?

It is true that there is no money in researching herbs and supplements ... so why do it. The conventional medical field will not accept the clinical studies that are conducted outside of the medical arena. Stephanie, I agree that you need to do your own research. I have gone to many conferences and my naturalist doctor has spent hours talking with me about the pros and cons and research behind natural remedies. I haven't dismissed conventional therapy as I still get Herceptin infusions every three weeks. (although my ND has suggested it is not necessary). My medical doctor has also suggested some of the supplements are not necessary but in the end it is my decision. 7 1/2 years NED after multiple liver mets and quite a few bone mets, I feel like I have made good educated choices. The combination of the pharma drugs, herbs, supplements, moderate diet changes and significant exercise changes have all contributed to my good health rather than just luck. I would never blindly follow any medical doctor or naturalist without researching everything I take.

It is well worth the time to consider all of your options.

Jen

Janelm6, we are really glad you found us, but sorry for what you are going through. It's very good questions what you are asking. Has your treatment team made suggestions? Anyone else want to chime in?

I am sorry about my word choice. I have been overwhelmed with non cancer people who want to give me advice. They want me to go to holistic doctors which cost a fortune, take and use oils and supplements I have never heard of, do energy healing. The only thing I have heard repeatedly is cannabis oil. I really don't know which way to turn in my treatment. I trust my doctors at university of Michigan,but my family wants me to go to Cancer center of America. Ugh....I don't know which way to turn.

Interesting and informative thread.

I'm pretty much into conventional Tx however had big SE with gemzar. Decided to look into things that may help along side that drug.

Magnesium (Slow-Mag) is something I must take daily. The chemo drains mag out if my body and when below 1.6 I get IV infusion at center. Magnesium regulated muscles. Heart etc. potassium in bananas.

I've added matcha green tea to my protein drinks and also take turmeric/pepper tablet daily. I think both have helped with inflammation and over all feeling better. Asked onc and she said ok. Multiple vitamin, calcium, vit D. @ day B complex. I eat a lot of fruit. I guess this is kinda complimentary ??

Jane, take everything anyone says to you with a grain of salt. They want to be the one to offer you a cure. There is NO cure for breast cancer. That's why there are "Run for the Cure" races all around the world. Just say thanks for the info and move on.