To Soy or Not To Soy – Still a confusing question 

Recently I learned that new studies are suggesting that soy might not be as bad as I thought it was in promoting breast cancer. Earlier on in my research, the studies were showing that the isoflavones in soy are phytoestrogens, properties that mimic estrogen and its effect in the body, specifically in attaching themselves to estrogen positive receptors, thereby increasing the amount of estrogen in the body which can cause estrogen positive breast cancers (ER+). Any studies countering this idea were based on Asian cultures where breast cancer incidents are low. My concern in these studies was that they were comparing apples to oranges, there are so many other factors to be considered when looking at Asian cultures vs American cultures, such as environment and lifestyle. I asked that a study be done on Asian Americans and all other Americans and also looking at when they started eating soy and what type of soy they were eating since the majority of American soy products are GMO and processed.

Someone must have heard my call. New recent studies are comparing the risk of breast cancer in Asian Americans and others and looking at when they started eating soy and what impact that may have. They also looked at the source of the soy products.

It would seem, based on these newer studies, that soy in its fermented state like miso and tempeh, is not linked with an increased risk of breast cancer in any Americans studied. Furthermore, for those who started eating soy at a young age, typically in the Asian cultures, it may even have a protective effect against cancer. However, for those who started eating soy in their later years (beyond the teen age years) no benefit has been shown.

Non GMO fermented soy and even non-fermented soy foods, eaten in moderation, do not seem to have enough dietary nutrition to impact breast cancer either way. However, soy based protein powders and bars that isolate the soy isoflavones and thereby provide it in higher concentrations may be linked to increased risks of breast cancer still because of its higher nutrition content of the phytoestrogenic properties. More studies need to be done.

I am still undecided and will continue to research this. As an ER+ breast cancer thriver who ate a ton of soy products before my first breast cancer diagnosis, I am not ready to hop on board the soy wagon. Since my children are allergic to soy, it won’t be back in my kitchen any time soon. For those who are ready to rejoin the world of soy, please eat soy in its natural, non-GMO, non processed, preferably fermented, form.

For those taking Tamoxifen, please note that some studies show that the soy isoflavone known as genistein can actually weaken the effects of Tamoxifen.

*Update: Listening to a podcast with Elizabeth Rider, health coach and chef, she mentioned that there is just as much evidence against soy as there is supporting soy. She too believes that it is based on geneology. If your ancestors have been eating soy for years, your body knows what it is and will handle it well, but if you have not, your body won’t. And again, fermented soy is really the best type of soy that should be eaten, definitely not GMO soy or processed soy like soy lecithin, soybean oil, or soy isolates.

Cites:

https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/soy-breast-cancer-risk/faq-20120377

https://www.ncbi.nlm.nih.gov/pubmed/27161216

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5590054/#sec2-medicines-04-00018title

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5590054/#sec2-medicines-04-00018title

https://blog.dana-farber.org/insight/2018/01/soy-breast-cancer-connection/

https://www.livescience.com/57721-soy-breast-cancer-paradox.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2981011/#!po=43.7500

Trust your intuition – Take 2, Part 3, Treatment #1

My port was placed Feb 15, 2019, and after a quick trip to San Francisco to tour colleges with my daughter, chemo began Feb 26, 2019. The worst part for me through the entire process was the IV benadryl, the rest went through fine. I had read a study and listened to a talk given by an oncology nutritionist that suggested fasting for 48 hours, a water fast, before and through the day of chemo. I fasted on the 25th with just water and a cup of black coffee, continued the fast on the 26th through treatment, ate a small meal of under 500 calories after treatment per the protocol, and then fasted through to the next morning when I broke my fast with a smoothie. The  nurse thought I was nuts and that it was a bad idea, she laughed at it but then I showed her the research. She asked the other nurse who had actually taught my chemo class, and that nurse said I was the 3rd or 4rth person to ask about it and encouraged me to try it and see if it works for me. I really believe it did.

They started me with Decadron, a steroid, which I was unaware of. I was supposed to have been called to pick up an order of it to take before chemo day, and the morning of chemo day. As mentioned earlier, my nurse manager has not been in contact with me at all. Neither has my oncologist other than the day she rambled off the treatment protocol. I had to stop her and ask her why we were going with the new route, if she thought it made sense to her based on what Dr. Isaacs had discussed with her, which she said she did. As soon as she answered my question though, she went right back to where she was in her memorized rant. I listened as well as I could and caught on to most of what she was saying. I don’t recall the Decadron though and was never told by anyone that an order was placed for it and that I had to take it before chemo. So frustrating. 

They ended up giving me the Decadron via IV, then the Zofran for anti-nausea, then the Benadryl which I felt coursing through my body, up the back of my head, making my arms and legs ridiculously heavy, my hands useless, but after all that, I was fine. I still have the back head headache though which I think is a result of the benadryl. After that we started with the perjeta, a 60 minute drip, then a 60 minute break to monitor for reactions. There were none other than almost getting sick at the beginning but I think that was still from the Benadryl. Break over, we started the 90 minute drip of Herceptin. Through both of these I had my feet in frozen booties and my hands resting on gloves of ice, as much as I could, to try to constrict my blood vessels in my hands and feet so the meds would not go there and cause nerve damage, ie neuropathy. After Herceptin, we had another 60 minute break then started the Taxotere for 60 minutes. No probs. So we went right in the Carboplatin after that for 30 minutes, though the first 15 were a slow drip. When all was done, she said I did great. Maybe the fasting helped!

As we were checking out, I had all my drugs ordered and picked up, Decadron for the next time, Zofran for nausea. But no Zarxio…..that was one thing I heard the oncologist say to me in her rant because it terrified me. I knew I would have to give myself a shot daily for 7 days to keep up my immune cells. The worst time for neutropenia is 7-10 days post treatment. For some reason it was not included on the order. The oncologist was shocked and said of course I have to have it. Again someone  not following through. Her ears must have been burning because she just called as I am typing  this to see how I am doing, go over everything, let me know that she was upset the Zarxio was not included in the order form and made sure to have it put on all future orders, and asked if I had any questions because she knew that the last time we spoke everything was really a whirlwind for me with the change of plans (I initially was supposed to start with surgery). Would have been nice if she made this call before I started chemo, especially knowing how much I did not want it, but at least she called. So I get to start the fun of self-inflicted needles tonight…..

TRUST YOUR INTUITION, TAKE 2, PART 3

After meeting with another oncologist at Georgetown Medical Center in DC, Dr. Isaacs, and speaking with a  medical oncologist at Dana Farber, Nancy Lin, MD., it was decided that because I have triple positive breast cancer, ie estrogen positive, progesterone positive, HER2 posiitve, with a tumor over 2cm in size (exact size unknown as the plastic surgeon excised some of it so this is based on what is left) that my best course of action is neoadjuvent chemo treatment, 6 cycles, spaced 3 weeks apart. This cocktail consists of TCHP – Taxotere, Carboplatin, Herceptin, and Perjeta. After this, I will have surgery to remove everything, including lymph nodes, and see if the regimen worked. If it did then I will continue with just the Herceptin for the remainder of the year. If it did not, they will then switch me to TDM1 which is a chemo combined with the Herceptin to directly target the HER2 cells. 

This all was a huge source of contention for me. Knowing what I know about chemo, following documentaries like TTAC and Chris Beat Cancer, I really wanted to consider going naturally. What does that entail? I am not completely sure. There is the Gerson Therapy, there is Crazy Sexy Diet by Kris Carr, there is the Budwig Diet, and so many more. There are combos of Vitamin C IV infusions, Hyperbaric Oxygen Chambers, Coffee Enemas (though I am seeing arguments against this), Infrared Saunas, drinking tons of carrot juice, and more that I am still unsure of. The expense and keeping up with all of it makes it all not feasible since most insurance won’t cover natural treatment. I know someone who went to the Hope 4 Cancer to treat Stage 4 metastatic breast cancer. Though she fully believes it is working, the cost is astronomical. I believe it costs about $47,000 for 3 weeks. Then you have to keep up with the treatments at home, on your own. She is gearing up for her second return but it looks like she will need another $20,000. We think Big Pharma is expensive?! Natural treatments are not any less. The price we have to pay for our health is unfair.

Regarding the effects of natural treatment, most the stories I have read are anecdotal, no scientific proof. Some argue for Keto Diets while others state that actually makes cancer grow, I have seen research on both through the NIH where the Keto  starving the tumors was based on a 5 week study, longer term studies showed that the cancer cells adapted, like they are so good at doing, and began feeding off the ketones after 5 weeks.  I already eat sugar free (for the most part), gluten free, and am an ovo-vegan. I have removed my inflammatory foods, so I am not sure if the natural methods will even work. I know this way of life has really helped me keep the cancer at bay for a much longer period of time then expected, but stress…..that’s a whole new area for me to tackle and not easily controlled. I am just grateful that I am so in tune with my body that I am able to know when something is not right and am able to trust in that instinct to get the answers, even though they are not always what I want to hear. So though I really wanted to try natural, it is not feasible and it scared my family, not trusting in it and believing in the science. I decided that since it was all way too controversial, I would try the chemo but support it as naturally as I can.

Trust Your Intuition, Take 2, Part 2

Since my diagnosis, I have seen an oncologist, a breast surgeon, my plastic surgeon and the nurse practitioner who is very nice but has yet to do anything she said she would, no follow up, no checking in, no guidance.  I have been told I need radical surgery to remove the rest of my breast skin and some muscle, no more implant, that I will have the axillary nodes removed from my armpit to make sure the cells have not migrated beyond the breast, and that I have to have chemo, just not sure which one yet. I was sent for a PET scan where they inject you with heavy steel thick case carrying nuclear radiation and glucose but then told, thank goodness, that the cancer has not spread, however, PETs can’t pick up small cancers so I still need chemo. But at no point did anyone stop and look at what may have caused this. When we asked, they dismissed the question. No idea why it’s back, if it’s recurring or new, just that I have it and it needs to be treated. That does not sit well with me. None of this does. 

The breast surgeon did say I was an anomaly. Most people she sees with a reoccurrence are usually within a few years, not 7.5 years later. Maybe, I thought, it’s because I changed my diet enough to keep these little suckers at bay, but the stress of the past 1.5 years starting with my sister’s diagnosis, my father’s passing, my foot surgery, my sister’s downward spiral, and my training for 2 marathons in that time all proved to be too much for my immune system and the little buggers took full advantage of that to start growing. Maybe if I find a way to reduce my stress, we can make the rest not grow.

Sometimes I think how strong I am that I ran a marathon with breast cancer, other days I feel like my life is a marathon causing my breast cancer.

Trust Your Instincts – My Story, Take 2, Part 1

I always talk about intuition, knowing your body, trusting your gut and being your own advocate. A lesson I learned in 2011 when I was told cancer does not cause pain, and yet there I was with a DCIS diagnosis, and here I am learning that lesson yet again. Back in December 2017, I went to my plastic surgeon complaining of pain in my breast. I didn’t know which doctor to see but thought it had something to do with the implants from my bilateral mastectomy and reconstruction 6 years earlier. He checked, saw nothing, and sent me for a CT. The CT did not show anything. I was disappointed that I could not  get an explanation for my pain. It was not nothing, I knew it. But I let it go because there were so many other things going on. By August, I couldn’t deny or hide the pain anymore. It became so intense that it forced me to slam on the brakes with 3 of my girls in the car and grab my breast and try not to cry in front of them. It scared them nonetheless. I knew I had to get an answer. My husband and I went to see my GP. She could not feel anything or see anything but she trusted my pain. She took the steps necessary. She sent me for an ultrasound that came back clean. She then sent me for an MRI. I was set up for one in October, having to wait until I got my period to schedule it, with and without contrast. I made sure both were back to back so I did not have to make two trips. I went for the MRI only to find out that the radiologist canceled my contrast one. I was irritated because I specifically had to wait the extra month to be able to get both done and I really felt I needed the contrast to see what was really going on. I was told if the MRI came back clean, they would have me come back the following Monday (this was a Thursday) for the contrast. Ugh! I called my doctor the next day for the results. She was told that both my implants had ruptured, the right side right where I was showing the pain. So off to the plastic surgeon I went again. He was surprised, said that ruptures usually don’t present with pain. He really believed it had nothing to do with the implants. Regardless, they had to come out. I was torn with the decision of replacing them or not, fully believing there was something causing the pain. My concern was if it was BIA-ALCL, or an infection, do I really want them back in….but it was the easier procedure, quickest recovery. So I made a deal with him, they could go back in unless he saw evidence of mold, infection, BIA-ALCL, or anything suggesting that the implants were the cause of my pain. He agreed, stating that he did not believe that would be the case.

On December 11, 2018, he prepared for a 3 hour surgery. All marked up, I was wheeled off to the surgical room in tears, still not happy with my decision. Less than 3 hours later, not only was I out of surgery, I was awake. The surgery only took a little over an hour. He told Dave that all looked good but he removed a large amount of scar tissue and sent a big chunk off to pathology. He saw me briefly and told me that the implants were not even ruptured, he does not know what they saw on the MRI but the implants were intact. He replaced them anyhow, adjusted my chest wall to make more room, in hopes of alleviating whatever may have been causing the pain. He asked me at my follow up if I felt better. I told him I don’t know. There was all the obvious pain from surgery, which actually was not too bad and I was off the pain killers after a day, but I don’t know if I feel better, emotionally or physically. Something was causing that pain and I had no answers for it. That never sits well with me. He repeated that ruptures don’t cause pain, that there were no ruptures, that everything looked clean and that he didn’t see any concerns but we would wait for the results of the pathology. I still felt something was wrong. I did not feel relieved, I actually felt like my sister with my raspy voice from the surgery, under my blanket, not being able to shake this feeling. I tried though, I hoped it was just the scar tissue causing the pain, or the tightness of the skin from the radiation like he suggested though it made no sense that it only started to hurt 6 years, now  7 years later……well, today, Dec 18, 2018, what is supposed to be luck in the Jewish world because it is double chai, my poor plastic surgeon had to call, while on vacation, at 8 o’clock at night, to deliver news he probably never had to deliver before, that I had cancer. You know, the whole first round, they never called it cancer. Initially a radiologist told me I had to stay for an ultrasound because they thought I had cancer,  but after that it was always DCIS. This time he called it invasive cancer. He said the tissue he sent to pathology looked abnormal, it was part of the encapsulated part of the breast (he actually never told me that and only told Dave  that he sent a big chunk of scar tissue off), and that was what came back as invasive. I have invasive ductal carcinoma, grade 3, poorly differentiated. That is all we know right now.

So, I was right in knowing something was wrong, again, I trusted my intuition, I 

pushed, I advocated for myself, I got answers. I just hope they did not come too late…

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