I may decide not to do chemo and radiation

voraciousreader

AA...I strongly suggest if you are interested in how N-of-1 is evolving, then do an internet search.  N-of-1 is already occurring and there is lots of research devoted to the topic.  And of course, read what Dr. Topol has written about it.  Also keep in mind that as more people become connected and appreciate the sophistication of what "smart" phones are capable of doing, N-of-1 is sure to change clinical research. No longer will researchers, clinicians and patients have to wait long periods of time for information.  They will be able to see what it is they are looking for in real time. 

Light....I wish to reiterate that making generalizations and swipes at "the industry" insults both of our intelligence. I wholeheartedly agree that all of us deserve the best information to make informed treatment decisions.  As I have mentioned, since the DH has an orphan illness, his treatments are outside of the kinds of treatments that are available to "normal" patients. The clinicians who treat him are MDs/Ph.Ds and think way,way, way outside of the box.  And patients like the DH who have no other choice than to become N-of-1s are quite courageous...and desperate too. They submit to all kinds of therapies, some more simpler than others. The DH must exercise to build muscle, take supplements in the amino acids family and keep a strict diet.  Everything he does each day is measured and documented.  If not for these brilliant researcher/clinicians and their patience, the DH would have passed years ago.  What keeps all of us going is the hope that one day soon there will be some kind of easier fix.  Short of the grease oil that he ingests along with his exercise, diet and supplements, there is NOTHING that can get his body to create energy the way normal folks do.  So we wait, research and study EVERYTHING that is out there with the hope that some day there will be SOMETHING that works.

That said, I do not make sweeping generalizations or swipes at ANYONE or any group of healers.

Momine

AA, my BIL is being treated for stage 4 cancer in Denmark. Part of the treatment is an exercise program.

voraciousreader

AA here's some examples of the fusion of technology and medicine:

http://www.nature.com/news/cancer-researchers-revisit-failed-clinical-trials-1.12835

 

http://www.nature.com/news/data-barriers-limit-genetic-diagnosis-1.12414

AlaskaAngel

Thanks, Momine. I'm inclined to wonder if one pretty much has to go outside the barriers of the limitations created by standardized treatment in the US and pharmaceutical profit to find it, but I'm glad to hear about it all the same.

A.A.

golilly2

Hello,

Are you saying that radiation treatments will not make a difference for my survival rate or very little to local reoccurrence. I just got my Onco DX test back of 19 after a lumpectomy surgery and decided that it was low enough to skip chemo.....but I also thought radiation was a must along with a type of hormone inhibitor for 5 years. I'm 56 and open to alternative treatments. Believe me I've looked up so many superfoods /organics etc to keep me strong and healthy and I know exercise has to be a way of life....but the thought of skipping radiation sounds wonderful. Im to start in another week or two and the doctors consider this a part of the lumpectomy treatment. Please respond soon since next week I go in for the calculations and tattoo marks.

WinningSoFar

One "advantage" of having IBC is that when you do chemo, you can actually see for yourself the working of the chemo.  After the first infusion, I thought I saw improvement.  After the second, I was sure I saw improvement.  After the first cycle, the surgeon sonogrammed the tumor (I had a solid tumor which is a  bit unusual), and it had shrunk 50% and was disintegrating like swiss cheese.  

I realize that some chemos work for some women, some for others, and sometimes there just isn't a good response.  But when chemo does work for you, you can actually see the results.  When you have IBC, you don't have time to waste--you have to hit it with what has the best chance of working, and working quickly.  

AlaskaAngel

VR, I appreciate the links, and can see how it might be possible with some privacy reduction and some expense in setting up a "rare disease database" for researchers to share data to benefit extremely few patients who happen to have some genetic similarities, but I don't see how pharmaceutical companies would be willing to further develop multiple different drugs to treat the few. I get it that this is just a starting point for demonstrating that it is possible to match some particular drug that had already been funded and happened to fail the majority. But I didn't grasp from the links provided how that would lead to any practical way to start from scratch with the purpose of funding the umpteen different drugs that would be needed to match each of our individual genetic profiles.

I'm not trying to bust anyone's bubble. I'm just not seeing how it could be done.

For example, say that you and 10,000 others happen to share a particular genetic mutation in being part of a massive shared database, and there is no drug that has been developed for it. Some pharmaceutical company would then focus on developing a drug or a treatment specifically matched to your group only. But all 10,000 of those with that particular genetic mutation would also have umpteen other differing characteristics, some of which would block or prevent the match from being effective. One could have the the same genetic mutation or variation, but could also lack the genetic make-up to allow the identical processing of the  the drug, or might be allergic to it, etc. You understand how that would be handled in ways that would make it possible to fund the exploration for all those very complicated differences in the application, but could you explain it?

pupmom

Golily, even though the stray cells, after lumpectomy, are localized, they can spread to distant locations if not destroyed. That's why you need radiation. A mastectomy, generally, eliminates the need for radiation, but not always.

BrooksideVT

GoLilly, you need rads.  Ask your onc for the statistics, but skipping radiation increases your risk.

Beesie

golilly2, radiation reduces local recurrence risk by 50%.  There are dozens of studies that have confirmed that figure.  This means that if you have a favorable pathology and good surgical margins and your recurrence risk after surgery alone is 8% (as an example), rads will cut your risk down to 4%.  But if your pathology is not so favorable and you face a recurrence risk after surgery alone of 30% (again, just an example), then rads will cut your risk to 15%.  The absolute amount of benefit you get depends on the level of risk that you start out with.

As for survival rates, while most of the benefit from rads is localized, there have been studies that have shown an improvement in long-term survival rates for those who have rads vs. those who don't.

AA, the reason that it's said that chemo only helps 1/5 to 1/4 of all patients is because a percentage of women who have chemo would have survived even if they didn't have the chemo.  Let's go back to my earlier post. Of the 100 women, if none have chemo, 43 will die of breast cancer.  If all 100 have chemo, only 19 will die of breast cancer.   So an extra 24 women will survive because of chemo.  This means that chemo benefited approximately 1/4 of the women who had it.  But the other way to look at it is that chemo cut the mortality rate for that type of diagnosis by 56% - in other words, fewer than 1/2 as many women died in the group that had chemo.  

The studies and analysis of results on chemo vs. no chemo have been extensive enough that I believe we can assume that factors such as diet and exercise are already incorporated into the results.  Many women diagnosed with breast cancer - both those who choose to have chemo and probably even more of those who choose not to - make changes to their diet and exercise. If we had two 'pure' groups - one group of BC women who get chemo but are ordered to not improve their diet and to not increase the amount they exercise, and another group with similar diagnoses, none of whom get chemo but all of whom improve their diet and increase the amount they exercise - then yes, we might see a small shift in the survival rates differences between the chemo and non-chemo groups.  But in the example we have here, with naturalhealing's type of diagnosis, would the difference in diet and exercise make up for 24 extra lives saved by chemo?  I'm put any amount of money on saying "No".  However, in a different situation, a lower risk diagnosis where the mortality rate is much lower and the difference between the chemo and non-chemo groups is much smaller, then it certainly could be possible that diet and exercise changes alone might bridge the chemo vs. non-chemo gap.  And that is why is it low risk for some women to choose to pass on chemo, but it's a much higher risk for others.  

AlaskaAngel

Hi alexgram. It is wonderful to hear about being able to quickly determine the the value of your chemo tx, and that by chance a treatment worked for you for IBC. My older sister has IBC and went through all the trauma of chemo but per her onc it did nothing to help. However, she then started hormonal tx, which is working, and she remains NED. Best wishes for continuing good health to you!

A.A.

golilly2

Thanks Bessie,

Every time I read different threads I learn new things and I just want to make the best choice for me.

I appreciate your response...

WinningSoFar

Dear Alaska, 

I'm triple negative and I assume your sis is hormone positive.  I'm so glad she is NED (as am I).  IBC is such a scary diagnosis and prognosis seems to be dicey.  I didn't even ask my oncologist what my prognosis was until I was more than two years after diagnosis.

  BTW, I love your state. 

voraciousreader

AA...I just gave some examples of exciting potential uses of N-of-1.  If you are that interested in getting a deeper understanding of how the method is poised to change how we do research and ultimately treat patients, I've invited you numerous times to read Dr. Topol's book and explore the topic on the net.  What the study regarding those exceptional responders was telling us is that their unique response gave researchers clues for further study.  Rather than throw out the baby with the bath water, the information from rare individuals gives researchers new areas to investigate.  I know that there is a body of researchers devoting themselves to understanding metabolic myopathies hoping that what they learn could help them improve "normal" individuals exercise workouts.  Imagine for a moment that there are things that we don't understand fully the best way for normal people to eat and get the "best" work out.  Do they eat carbs first and protein after a work out?  No one knows EXACTLY the right combo of food and amount of exercise to give the best work out.  But studying the outliers give clues to what works and what doesn't.  Then, once they understand WHY the outliers respond the way the way they do, researchers can then extrapolate and apply what they've learned to normal people.  The idea is that the outliers, N-of-1's ARE GIVING US IMPORTANT DATA  to learn from and not be discarded.

AlaskaAngel

Beesie, my point is that because they haven't done the studies to differentiate between chemo-treated patients with good health habits and those with poor health habits, I don't see any definite information provided to support your basic assumption:

"The studies and analysis of results on chemo vs. no chemo have been extensive enough that I believe we can assume that factors such as diet and exercise are already incorporated into the results."

You are exceptionally knowledgeable and I as well as many others appreciate that. What evidence can you provide to indicate that the difference would be small?

"If we had two 'pure' groups - one group of BC women who get chemo but are ordered to not improve their diet and to not increase the amount they exercise, and another group with similar diagnoses, none of whom get chemo but all of whom improve their diet and increase the amount they exercise - then yes, we might see a small shift in the survival rates differences between the chemo and non-chemo groups."

For me, where this becomes acutely important in particular is when a patient who has a terrific track record history for best possible personal health practices is given the identical "preventive" recommendation for treatment as a person who has a terrible track record history for personal health practices because both recommendations were based on the cancer's characteristics. Yes, each patient was diagnosed with the same cancer regardless of their prior personal history for health practices, but my bet is that the one with excellent health practices would stand a far better chance for non-recurrence. 

What is distressing to me about that is that since these two patients never know about each other, the one with the excellent personal history is being over-treated, and the one with the poor history is being treated with maximum treatment available to match her situation. To me, that reduces the basis for the treatment for the patient with an excellent history, and it fails to provide a really important impetus for the patient with the poor history to be motivated to change health habits.

What is never openly said to such patients as the the OP is, "Considering YOUR past health history could make a difference in the recommendations being made."

AlaskaAngel

alexgram,

My sister and I knew squat about IBC when my sister was dx'd. But because she did not fit the profile of the major characteristics common to IBC (her only matching characteristics were/is obesity and the obvious skin condition), I was a great deal more optimistic than she was about it from the getgo. I am sorry she went thru chemo that was useless for hers, though. (BTW, I have family in YOUR state and I love it too!)

AlaskaAngel

VR,

I understand how comparing databases of behavior modification would be helpful. I still don't see how the funding would be practical for developing appropriate drugs from scratch to suit each patient's individual genetic profile. And I do think you have done your best to provide the answer for that for me. I just am not seeing one.

voraciousreader

AA...it is not just about genetics... It is about the synergy between data and technology AND genetics.

Beesie

"Yes, each patient was diagnosed with the same cancer regardless of their prior personal history for health practices, but my bet is that the one with excellent health practices would stand a far better chance for non-recurrence."

I don't know.  If someone develops an aggressive and spreading cancer despite having the best possible health practices and lifestyle, then why would we think those same factors would reduce this individual's risk of recurrence?

It seems to me that it might be more likely that someone with bad health practices and a high risk lifestyle would benefit from changing her practices - and a change from bad practices to good ones might have a larger impact for her than they would for someone who already was super healthy before diagnosis. 

I don't know either way - I'm just speculating here.  But when someone comes to the board saying that they've always done everything right and yet they still developed breast cancer, it seems to me that perhaps this is one individual for whom lifestyle factors does not play a significant role in their risk profile. The number one risk factor for breast cancer is being female.  The number two risk factor for breast cancer is getting older.  Genetics - and I don't mean a genetically inherited high risk mutation, but just the genes we inherit and how they impact our bodies - plays the next most important role.  The age you started your period, whether you have dense breasts, the amount of estrogen you have in your body, etc.. - those things are related to your genes and they can have a significant impact on your breast cancer risk.  Lifestyle factors all tend to be "low risk" factors when it comes to breast cancer development. And that's why 'doing everything right' often doesn't stop the development of breast cancer and why it often doesn't stop the development of a recurrence.

AlaskaAngel

VR,

Data and technology either have to be synergistic enough to be  primarily a means to an end and not an end in themselves, or they will be primarily irrelevant.

AlaskaAngel

Beesie,

"Yes, each patient was diagnosed with the same cancer regardless of their prior personal history for health practices, but my bet is that the one with excellent health practices would stand a far better chance for non-recurrence."

Example: While someone might develop cancer from environmental exposure to a carcinogen, if one has a strong immune system to begin with and doesn't blast it with what is rather generous prescribed carcinogenic treatment, best health practices before dx and after still would favor a much stronger immune response to other assaults and injury, and would not include premature aging caused by recommended toxic treatments.

voraciousreader

aa...they are both!

voraciousreader

AA..please provide evidence to your last reply to Beesie.

AlaskaAngel

VR, my comment was a request to Beesie, and I am still waiting for any response with evidence to support the contention that the difference would be small. 

A.A.

P.S. "The age you started your period, whether you have dense breasts, the amount of estrogen you have in your body, etc.. - those things are related to your genes and they can have a significant impact on your breast cancer risk.  Lifestyle factors all tend to be "low risk" factors when it comes to breast cancer development. And that's why 'doing everything right' often doesn't stop the development of breast cancer and why it often doesn't stop the development of a recurrence."

Once again, the assumption is being made that this is so, but without clear basis of non-bias.

It would be helpful to patients in making choices they feel more comfortable with if large, properly done studies were conducted to demonstrate what the differences in results are. Until then, bias either way won't help us.

inga6060

Just wondering if anyone is aware of the cancer healing centers in Mexico, Nevada, Arizona, and California?  Apparently not, or there wouldn't be so much ignorance being spoken.  They specialize in terminal cancers.  Really.  They would be out of business if what they were doing wasn't working.  I can't believe so many people believe what there Dr.s.  tell them.  The fda has approved many drugs that have killed people, and were taken off the market.  They have approved aspartame, msg, hydrogenated fats, etc.and other harmful agents.  does that make them good for you? Most countries in the world have banned what the fda and Dr.s think are just fine here.  Wows!  Unbelievable.  

pupmom

A fool and his money are soon parted.

exbrnxgrl

Inga,

I would venture to guess that most of us have heard of the cancer healing centers you alluded to. I know I have and have made a very conscious decision to seek tx from more conventional sources. Three happy, productive and pretty normal years at stage IV for me. BTW, I do not speak ignorantly  nor do any of the other amazing women I've met on bco. Your choice is yours and I respect that as I hope you will respect those who make different choices.

Michele2013

I think she forgot to mention Oklahoma!

Camelot Cancer Care......hmmmm

Deblc

Going back to the mention of aspirin to prevent cancer. My anecdotal "evidence" is that I suffered from debilitating migraines every month for at least ten years, and basically lived on Extra Strength Excedrin with Aspirin. And here I am with stage 3 breast cancer. What is my point?  I don't know, except that I wish it had worked for me !! And I am sure that all the vegetarians and athletes who got cancer anyway feel the same way when they hear about how plant-based diets and exercise prevent cancer.  Don't mind me, I am just very depressed that there really is no magical cure. 

I chose to do chemo/radiation/herceptin because, despite all the evils, I felt that that gave me my best chance. Another thing that convinced me was that a friend who had stomach cancer went to Mexico to one of those cancer centers and 8 months later his cancer had progressed, which is when he decided to go the chemo route. But that didn't help either, so who the hell knows. How I wish that I could ingest a certain food/vitamin/oil and not worry about it recurring because I lay awake nights agonizing over what I would do if it does. Please please please, if anyone in the alternative forum has convincing evidence that any of these things work, please let me know !!!!!!

Beesie

AA, I generally present data based on research, not assumptions.  When it's a personal assumption, I tend to say so. 

There are dozens of studies that show that lifestyle factors are "low risk" factors relative to breast cancer risk.  The studies are easy enough to find.  

Most studies on lifestyle factors suggest that they influence breast cancer risk (or recurrence risk) by 10% or 20% or 30% or something like that.  Here are a few:

Exercise: "Women who in the previous four years had done regular exercise equivalent to at least four hours of walking or cycling per week were 10 percent less likely to be diagnosed with breast cancer than those who did less exercise."  Exercise May Cut Breast Cancer Risk in Older Women

Alcohol:  "A significant increase of the order of 4% in the risk of breast cancer
is already present at intakes of up to one alcoholic drink/day" Even Light Alcohol Drinking Ups Breast Cancer Risk

Obesity:  "Pooled data from seven cohort studies including 337,819 women and 4,385 incident BC cases found a 26% increase in postmenopausal BC risk with BMIs greater or equal to 28 kg/m"   Role of Obesity in the Risk of Breast Cancer: Lessons from Anthropometry

As for 'genetic' factors, being a loser in the genetic lottery (relative to breast cancer risk) can double your risk (a 200% increase for something like high estrogen levels) or even increase your risk by as much as 600% (for consistently high breast density post-menopausally).

Breast Density:  "Women with dense breasts have been shown to have a four- to six-fold increased risk of developing breast cancer; only age
and BRCA1 and BRCA2 mutations increase risk more."  Breast Density and Cancer Risk: What Is the Relationship?

Family history of breast cancer: "Having one first-degree relative (mother, sister, or daughter) with
breast cancer approximately doubles a woman's risk. Having 2
first-degree relatives increases her risk about 3-fold."  What are the risk factors for breast cancer?

That last link talks about most risk factors, and quantifies the risk level for many of them.   This table from the Komen site does the same: Risk Factors Summary Table of Relative Risks    Compare the risk level of the "lifestyle" factors vs. the "genetic" factors.  It's pretty clear.   And before anyone comes back and questions the sources and the research, check out all the sources provided at the bottom of the chart. 

I'm done with this discussion.  Over and out.