Snapshots from One Fluffy Chix Fight Against Breast Cancer
What do you eat to prevent breast cancer, or cure it if you are unfortunate enough to be fighting it? Will proper nutrition help you beat breast cancer? And just what is “proper nutrition” anyway? What role does a low carb lifestyle play in nutrition and breast cancer? The answers to these questions are not clear-cut nor easily determined. In order to even begin to address these questions, we must first understand a few things about the nature of the beast – breast cancer. We must also understand the difficulties involved in writing nutritional policies for use on a growing population of women with breast cancer.
This Is A True Story
In Texas, you will often hear someone explain in preface to a long, monotonous diatribe, “This is a true story – I cain’t MAKE this stuff up…”
That’s your clue that the following information will either leave you in tears and fits of uncontrollable laughter or that it will bore you to a similar state of tears, minus the laughter. It’s a complete crap shoot as to which it will be and most often the pre-determination is based solely on the orator. If Deadly Dull Dan-the-Man is the storyteller at the wheel, that might be your cue to excuse yourself on the pretext of having some life-threatening dryer lint emergency. If Marv-the-Life-of-the-Party-KaraokeStrokeItFame is tellin’ the tale, it might be worth your while to sit back, grin and listen.
So folks (all 2 of you readin’ here), what I’m about to tell you? It’s a true story. It didn’t even happen to my friend Cooter Brown, or Cooter Brown’s wife. It happened to me. That’s how I know it is a true story.
A Girl, A Couple of Boobs, and a Parrot Walk Into a Bar…
Last summer I learned I had a late stage breast cancer. Ginger (that’s the name of the dearly departed boob of the left-side persuasion) and Mary Anne (the tagalong tutu on the right side) were very nervous, fearing their days were numbered, and rightly so. It turns out both got voted off Survivor Island. Gilligan and the Professor haven’t been the same since.
I’m in the process of replacing them with two boobs of another nature. Let’s call ‘em “foobs”, short for “fake boobs.” The Jello jiggle will be returned to my life this month in the first of 3-4 reconstructive surgeries (minus sensation and operational ability – no breast feeding capabilities, which is fine, since I no longer have the downstairs equipment in the baby makin’ factory either).
The really good news is that, unlike the original Ginger and Maryanne, we’re very hopeful the replacement pair won’t try to kill me. There is also a strong likelihood the new pair could double as indwelling flotation devices in the event of a plane crash over water, or in case I travel on the Titanic or something.
Without going through the agonizingly dull details, fear-filled vain imaginations, and very boring minutia of breast cancer treatment and the aftermath which can be almost as grueling, I figured we should talk about something near and dear to our hearts (and other major organs, arteries, veins, and yes – breasts too.). Let’s talk about diet and breast cancer. And since this is a disease without borders, it’s going to touch 1 out of 8 of you in your lifetime. This is an important discussion, and timely, since October is National Breast Cancer Awareness month. Yes, 1 out of 8 of you will hear the same words I heard last spring, “I’m sorry “state-your-name,” you have breast cancer.”
Actually they didn’t really say it that way. The doc said, “Look. Your mammogram shows a very strong likelihood of cancer. My job is to go in there and bring back a diagnosis of cancer. So get ready for the fight of your life, because I’m very good at my job.”
I had cancer. *sob*. And almost the first thing I wanted to know and what no one would tell me is – now what the hell do I do? The very first thing I wanted to know was if “this was it.” Was I a goner? But, following right on its heels was the need to know if there was any way I could affect my outcome – other than having a positive outlook? Did I have any control left? Short of being perky Sunny-Susie, could food and nutrition affect my outcome? Could it cure me? Could it keep it from coming back?
Did that Twinkie from 1981 and the Lay’s from 1999 cause this beast to grow in Ginger and 12 out of 34 of its faithful little lymph node minions? Did I give myself cancer because of my inappropriate consumption of crap? But even more importantly, what was I ‘sposed to shove down my pie hole now that I had active, living cancer conspiring to kill me and “my girls”.
So I started googling. I googled and googled for what felt like a bazillion hours. And with each google sort I would bring back busloads of contradictory information. The one thing in common with the majority of information out there was that it insisted I should be eating a vegetarian, very low fat, dairy-free diet. Most of the complementary, holistic medical people even recommended going on juice fasts and taking tons of supplements and pancreatic enzymes. I gave up counting the number of times I read “healthy whole grains and low fat”.
Concrete evidence-based information regarding dietary effects on breast cancer from double blind, control studies is woefully short and contradictory at best. Not only that, but breast cancer isn’t a one-size-fits-all disease – not for you or I, and not for the docs doing the research. This isn’t a “broad brush” disease with a conveniently packaged solution. It’s multi-variate and necessitates a multi-disciplined approach. Diet (and exercise) is only one of the variables. More on that in a minute.
You Have Breast Cancer and By The Way, Please Learn Breast-Cancerese-As-A-Second-Language In Your Spare Time
You develop breast cancer and you’re suddenly faced with an information explosion and the need to learn an entirely new language along with an accompanying set of acronyms at a time in your life when you are under enormous stress, operating on adrenalin, sleep deprivation, and stress hormones in a basic fight-or-flight marathon competition for survival.
The important thing to understand is that cancer is complex and highly individualized. It’s also capable of mutation and adaption. “Breast cancer” has many subtypes. To understand the term more easily, think of it as an umbrella disease. Breast cancer denotes the umbrella and all the different subtypes are like mini-diseases covered by the umbrella. Each type is so different that what works or affects one may act completely differently for another, to the point that what works for one patient may not work on your friend in the chemo chair to your left. That includes nutrition prescriptions.
For grins and giggles, let’s give you a sample of this analogy, okay?
There are 3 Main Subtypes of Breast Cancer:
- Ductal (most common)
- Lobular (most common in women over 60)
- Inflammatory Breast Cancer (most aggressive).
- There are other subtypes, but for today we will only discuss these.
Within those 3 subtypes of breast cancer there are even more subtypes based upon how the tumors react to 3 specific hormones. There are three main tissue markers pathologists look for when evaluating breast biopsies. Think of this process as “profiling” breast cancer tumors.
How a cancer reacts to these three hormones and to what extent it reacts to these three hormones determines your breast cancer “type”. The degree to which the tumor reacts to the hormones is very important.
Breast cancer treatment has made great strides in the past 20 years. But we are still only at the stage of taking a shotgun approach to treating the profiled subtypes. The individual may very well have nuances and degrees of individual difference between herself (or himself) and other members of the subtype population. Doctors have developed treatment protocols or a set of “best practices” which translated means “standard of care” for each main group of subtypes of breast cancer.
We are only beginning to treat each patient as a genetically unique individual. There are still so many trials and studies that need to be done for each variation of breast cancer, in order to hone a specific treatment modality for that sub-type. Her-2/Neu (Herceptin) is an example of a targeted therapy specific for one sub-type of breast cancer.
3 Primary Tissue Types of Breast Cancer:
Beyond the ductal, lobular, inflammatory nomenclature, if your tumor reacts to any of the 3 following hormones, the tumor is said to be receptor positive (+). If your tumor doesn’t react it’s said to be negative (-):
- Estrogen Receptor Status – does the tumor contain estrogen receptor sites?
- Progesterone Receptor Status – does the tumor contain progesterone receptor sites?
- Her-2/Neu Receptor Status – does the tumor contain Human Epidermal Growth Factor2 receptor sites?
Main Subtypes (There are more subtypes, but these comprise the largest sub-groups):
- Estrogen Receptor Positive (ER+), Progesterone Receptor Positive (PR+), Her-2/Neu Negative (Her2 –)
ER/PR+, Her2- (which is what I have – it’s one of the most common types of breast cancer.) - Estrogen Receptor Positive (ER+), Progesterone Receptor Positive (PR+), Her-2/Neu Positive (Her2+)
ER/PR+, Her2+ (also called Her2 for short, very aggressive, but has a very targeted group of drugs
to treat it) - Estrogen Receptor Positive (ER+), Progesterone Receptor Negative (PR-), Her-2/Neu Negative (Her2-)
ER+/PR-, Her2- (fairly rare) - Estrogen Receptor Negative (ER-), Progesterone Receptor Positive (PR+), Her-2/Neu Negative) (Her2-)
ER-/PR+, Her2- (fairly rare) - Estrogen Receptor Negative (ER-), Progesterone Receptor Negative (PR-), Her-2/Neu Negative) (Her2-)
ER/PR-, Her2- (more rare and extremely aggressive)
Your Type Of Cancer May Be Associated With Nutritional Commandments:
Based on tumor tissue typing, your doctor may give you a nutritional foundation or rule book. For instance, because I had what they term a hormone receptor positive or hormone driven breast cancer my doctor, hereafter called the Wizard of Oncology or Wizard for short, told me my number one rule of nutrition was, “Thou shalt not consume soy in any form.”
Google that command and you will find other doctors telling you that you should be eating tons of soy, that it’s protective against hormone positive cancers. Soy contains phytoestrogens and could potentially add to the estrogen load in your body in a cumulative, dose dependent way. That’s not so good if you happen to have an estrogen receptor positive (ER+) breast cancer as I have.
Yet other people claim that because soy is a phytoestrogen it is a “weak” form of estrogen. That weak form of estrogen gets plugged into estrogen receptor sites on the cancer. Usually the estrogen produced by your body plugs into those sites on the cancer cell and acts like rocket fuel to the cancer, accelerating proliferation. Meaning the estrogen helps the cancer make millions and millions of Peter-Pickett-Pen cancer cousins that all look exactly like “it”.
Supposedly, soy, the weak estrogen, plugs into the receptor site instead, thus blocking the ability for the estrogen in your body to tune in, hook up and turn on. The soy replacement is theoretically supposed to cause the cancer to produce fewer replications. The results of this theory have yet to be fully proven.
Soy appears to have a bell-curve effect on hormonally driven cancers. What the hayull (Texan for “hell”) does that mean, exactly? It means that those people who eat the least amount of soy, or eat the most amount of soy, tend to have the best cancer-protective results. Women in Japan appear to be protected by soy, but they also have the highest ingestion of soy over an entire lifetime. The Japanese women have a different historical relationship with soy than oh, say, someone in Western Maine, who’s never eaten soy in their life; who gets ER+ breast cancer and suddenly starts pounding down Boca Burgers and soy protein isolate by the caseload. Japanese women also tend to consume fermented soy as opposed to GMO-soy proteins found in almost every packaged food product in the western hemisphere. Big difference.
The key in the equation appears to be this specific variable: there is a concentrated soy consumption over time which is quite possibly influenced by the independent genetic profile of each person within that Japanese ER+ cancer group. (Ahem! This might just be your time to go check on that potentially flammable dryer lint situation you have brewing.)
The Wizard literally wrote the book on breast cancer. And his take on soy is that there are still too many confounding results and studies and that you don’t want to be the human guinea pig that proves or disproves the theory. The price (your life) is too high and the risk/reward doesn’t look attractive. He opts to place his patients in the group of people ingesting the LEAST amount of soy. (Remember the bell curve of soy efficacy on hormone positive cancers?)
At some point, you MUST trust your doctor, even if you think you are Junior Dr. Kildare. (Children, Dr. Kildare was a mid-20th-century soap opera about a brilliant, caring, and impossibly handsome doctor.) Ultimately you should take your cues on what to eat or avoid from your doctor.
Another illustration about the diet peculiarities of breast cancer relates to fat. Most people in the cancer industry will spout back the usual drivel about fat being your foe. They say fat stimulates cancer growth. But per the Wizard, there tends to be only one sub-type of breast cancer (Triple Negative Breast Cancer, which is a hormone receptor negative – Estrogen, Progesterone, and Her-2/Neu Negative cancer) that appears to be associated with increased proliferation of tumor growth in a high fat diet.
(Note the word “associated,” because folks – “association” has never been able to prove and support “causation.” However, if I had a triple negative breast cancer I would NOT want to be the guinea pig for that experiment either, just like with soy and my ER/PR+ cancer.)
Then there’s the whole issue of supplements. You’re told by some doctors (many of them are in the holistic or complementary medicine field), to pound down antioxidants and take large doses of Vitamins C and E and the EGCG found in green tea. Other doctors (such as the Wizard) do not want their patients taking ANY antioxidants, especially during treatment or when you have living cancer in your body. Antioxidants can interfere, making chemo less effective on cancer cells. In other words, they act as a masking agent, potentially protecting the cancer cells you’re paying lots of money to kill.
The only supplement that appears to have consensus among cancer docs is Vitamin D. Most studies support a very strong relationship between low Vitamin D levels and the development and recurrence rates of breast cancer. The women with the lowest levels of Vitamin D have a significantly higher rate of breast cancer and breast cancer recurrence than those with adequate levels. For that reason, most oncologists will test 25OH Vitamin D3 levels (25 Hydroxy Vitamin D3) and supplement if your level is low.
It’s taken all this background discussion to finally get to the nuts and bolts of nutrition and cancer. It’s difficult to get nutritional advice that deviates from the standard “balanced diet,” food pyramid pogrom. Studies focused on nutrition and breast cancer are in their infancy. We have a dire need for in-depth controlled studies that test specific aspects of nutrition on cancer.
Join CarbSmart for Part II in a three part series on Eating to Beat Breast Cancer
Find out what’s involved in changing the nutrition mindset of healers and patients of western medicine. I’m tellin’ ya, it ain’t easy, pardner. In Part II you will learn exactly what I ate in my n=1 experiment in cancer nutrition for the woman fighting ER+ breast cancer. I hope to see you back here soon! The story’s just heatin’ up!
You always teach me something – and I have a smile on my face while reading! Thanks SusieT!
Gosh DeAnne! What a sweet thought!!! MUAH!!! I think we teach each other, daily!!!
I am a plastic surgeon working in Chicago. I perform a great deal of breast reconstruction, This is excellent information. I do a blog and podcast. Did you be interested in doing either of these?
Hi Dr. Ostric.
Great to hear from you and so happy you approve of the content! As someone who is just recovering from bilateral Latissimus Dorsi Flap reconstruction (in my 3rd week post-surgery) and still have 2 drains in my back, I’m very glad to have plastic surgeons reading here at CarbSmart.
I would love to speak with you or write something regarding breast cancer awareness in context with my partnership with CarbSmart. CarbSmart has assembled a great group of talented and more importantly, KNOWLEDGEABLE and experienced people to help educate and create awareness for low carb living.
CarbSmart not only answers the big questions, but dials down into the deeper metrics of low carb and Paleo lifestyles along with associated tools and resources that help the individual reader stay focused and results-driven.
As a CarbSmart reader, writer and cancer survivor – I feel very blessed to have low carb living in my life. I believe that as poor as my odds are for five year survival (12 of 34 nodes through Level II, positive for living cancer after neo-adjuvant chemo at the time of surgery), that reducing my inflammatory load through the use of a low carb diet, exercise and weight loss will partner with my anti-hormone pill (Letrazole – generic Femara) to give me the greatest shot at remission and dancing with my wanna-be-steady-partner-NED (No Evidence of Disease.)
Hope to see you back here for Part II of Eating to Beat Breast Cancer!!
(Feel free to email me for further information on how CarbSmart and I can help you continue to spread the word about low carb living, breast cancer, and reconstruction.)
Not only are you an awesome cook but a great writer. Now I can share this with everyone instead of explaining and explaining why soy is so bad for me (I have thyroid issues as well so soy is the double whammy!!) BTW you had asked me to update you on my reconstruction and I am happy to report that things are going well and am having the final surgery this week! Yea!!!
Wow Laura! Woooottttt! Let’s party about the final surgery! So dare I personalize and ask, is this the week you get the nipples back on the Barbie boobs????!!! I ask only cuz I’m not “quite” so sure about the order of things with this reconstruction. The Wizard of Plastics knows that in order to keep me moving forward, he must only feed me small glimpses of the next step up the mountain or else I might balk and run screaming from his office!
I’m so excited for you going into the final round!!! I will add you to my prayers for the surgeon’s hands to be blessed and sure and for you to heal quickly well!!! MUAH!!!
You go girl!!! Yayyyyyy!
Wow, I think I have met a soul sister. You are hysterical, wise, irreverant… and did I mention hysterical? I love your candor and can’t wait to read the next two parts!
Hi Sophie! Maybe we’re twins daughters of different mothahs??? 😀
Candor and humor are my best defenses against this son-of-a-biscuiteater disease. I was telling a friend the other day on my blog that I often fear offending a survivor or previvor or a family member or friends who has been hit by breast cancer. With 1 out of 8 women being intimately touched by breast cancer, chances are huge that there will always be a member of that group present.
When you deal with the subject of breast cancer, you deal with a subject that many women associate with their innate expression of femininity and sexuality. Not only do you have the 2 of the most obvious sexual organs affected but you also have the most hidden sexual organs affected. It’s like breast cancer attacks not only “the girls”, but it also attacks our brains through our self-image and psyche, but if you have a hormone positive breast cancer, it will ultimately affect your ovaries if your pre-menopausal and it will affect your adrenals and pituitary glands if your post menopausal.
I say that because if you have a hormone positive cancer you have to take an anti-hormone drug for 5-10 years after surgery, radiation and chemo. This anti-hormone drug shuts down either the production of estrogen in your body (if pre-meno) or it shuts down the conversion of androgens produced by your adrenal glands and pituitary if you are post-meno).
Either way, you’re dealing with a disease that takes you from being a living breathing, sexual entity to a pre-pubescent girl quicker than you can say Malibu Barbie. Suddenly you not only have to deal with whether your partner still finds you attractive and womanly in a sexual way but you also have to figure out how to “fake it till you make it” cuz your estrogen has up and left you in a snit.
The up side is that there are fewer hormonal storms and temper tantrums. The down side is that there are few hormonal storms and temper tantrums.
I tell you all this and it sounds like you may already be in the “8th woman out club” as Laura and I are, but to me, you either have the choice of laughing your way through it or crying daily at the magnitude of what has been taken from you. I don’t want to sit in the victim seat, so I choose to maintain power and laugh my way through it. The unfortunate part of that choice is that someone else may not be handling their fight the same way. And I would hurt terribly if I hurt someone through my irreverence.
I hope I never do that.
I also want to say to all the healers out there who help each of us fight this effing disease, thanks for playing on Team-Save-Second-Base! You all ROCK!
Beautifully written! I would not have expected less! Can’t wait to read more sweet lady!
“Sweet Lady” – haha! You must have me confused with my sainted sissies (along with their long suffering Don Quixote – Denny) who have nursed me through treatment, recovery, part 1 of 3-4 reconstructive surgeries and put up with my whining and DFSW shenanigans for the past year! LOL! I passed sweet about 1000 miles, 1 year, 5 months and 2 days ago! 😉
But I’m sooooo glad you liked it!!! 😀 Part II will be out soon!!!
Is this still an active site? I had a few questions on estrogen driven cancer and diet. What CAN you eat? I know doy is out. What about peanut butter? I,guess dairy is out, too? Thanks for any info.