[AlaskaAngel]

I have re-read every post in this thread. I have seen the endocrinologist, and want to share what I've learned from it. In addition, 2 new threads that are relevant to this discussion about this issue have started on the main forum.

This post will be a long one and I apologize for that. And this quote from Tanya's earlier post summarizes what I learned:

WHI study results state "the principal options for the reduction of breast cancer risk in postmenopausal women are the prevention of overweight and obesity to avoid the development of hyperinsulinemia, the medical treatment of insulin resistance..."

Those who are overweight at time of diagnosis and treatment are at higher risk for recurrence, and I hope some explanation might help them to understand why.

I suspect that those bc patients who are much younger at time of treatment, or who have gone through natural menopause rather than chemopause, are less likely to have to deal with these problems because their metabolism has been less severely (or perhaps less permanently) affected.

I think it might help to summarize and use my history as an individual, just as an example:

At time of breast cancer diagnosis, I was premenopausal at age 51 with the upper limit of normal BMI of 24.6 at 155 pounds. I exercised twice a week for 20 minutes to not gain weight. If I went out to dinner and ate more calories, I had to increase my exercise for a single week to 5 days to lose the added weight, and then I could maintain my weight again.

At completion of treatment for breast cancer (CAF x 6, rads, tamoxifen x 1 3/4 years) I weighed 178 pounds with a BMI of 28.3 (overweight but not obese), and needed to drop the weight I had gained.

Physiologic changes from treatment included:

1. Sudden severe reduction in estrogen levels and in testosterone level. The lower testosterone level and the repeated immobility from 6 episodes of nausea and vomiting + significantly reduced muscle tone and muscle bulk, which (combined with weight gain) resulted in increased clumsiness and less ability to exercise.

What we aren't told before doing treatment is that the permanently lower testosterone level means that the balance of our body composition of muscle and fat changes permanently. Testosterone works for building and maintaining muscle. With less of the testosterone, the exercise that you used to do that worked for you previously is not going to produce the same results.

Research into testosterone supplementation for breast cancer patients continues. Since testosterone also helps with bone health, it could mean that some supplementation may help to prevent recurrence. Testosterone is also a hormone that influences gender and libido.

2. Fatty liver by ultrasound, with mildly increased ALT and AST
3. Continuing low blood counts. (I never used any blood stimulator during treatment, such as Procrit or Neupogen.) Low blood counts reduce oxygen-carrying capacity of blood, and thus also reduce the ability to exercise.
4. Radiation treatment effect that continues long after actual exposure, with increased fatigue that reduces the ability to exercise.
5. Slowed metabolism, but normal blood glucose levels.
6. Significantly increased weight from both the use of steroids given with chemotherapy and from repeated periodic immobility due to nausea and vomiting.

Permanent dietary changes I made, to try to help with weight management:

Gave up all standard sugars, and substituted stevia. Presently the only glucose I eat is 1 teaspoon of honey once a day (20 calories), and the sugar in 2 squares of dark chocolate (100 calories), and whatever glucose I get from fresh fruit
Gave up all caffeine
Gave up all forms of products containing white flour, changing to whole grain
Gave up all forms of corn and potatoes entirely
Dropped rice consumption to 2 to 3 times a month, using brown rice only
Cut dairy intake by 2/3
Cut egg consumption to 2-3 eggs a month
Cut red meat consumption to 2-3 times a month
Increased cold water fish consumption
Added 2 tablespoons of daily freshly ground flax seed
Maintained fresh vegetable and fruit consumption
Limited alcohol consumption to 1/4 cup a month of beer or wine

With making all those changes, I couldn't understand WHY I wasn't losing weight, especially since I was doing the same amount of exercise I had always done that had always worked for me. Eventually I resorted to not eating all day every day until 4 PM and then only having dinner, with medium portions and a single helping, and going away from the table still hungry. It took 6 years of steady effort and I lost 23 pounds, but it took enduring staying hungry constantly with or without adding more exercise.

I found it very difficult to try to work and stay constantly hungry. I wanted to be able to eat more than 1 meal a day, so I joined 2 others from HER2support in recording everything I ate for 2 weeks and what exercise I did (jumping rope 30 minutes a day). I was eating 3 meals a day, 1000 calories a day or less, and there was no weight loss. One of my partners from HER2 did significant exercise and ate over 2,000 calories a day with no weight loss, and the other was walking for exercise and eating 1000 calories or less each day like me, and having the same problem I was having.

I then had a visit with the registered dietitian at the cancer center and gave him my 2-week diet record. On his scale I weighed 153 pounds in October, 2008. The RD used a device called a MedGem, which measures one's breath for a period of time and calculates the calories that person can take in per day without weight gain if they do no exercise. That number for me was 1440 calories per day. I was advised to increase my caloric intake to 1350 calories a day and to continue jumping rope 30 minutes a day. Theoretically this meant I would be eating 90 calories less per day than it would take not to gain weight even if I didn't exercise, and by adding daily exercise to this I would lose weight. The RD told me that even thought I had been doing 30 minutes a day of significant aerobic exercise, I had not been eating enough calories to get my metabolism working faster.

I continued the exercise and increased diet for 3 months without missing a single day of exercise, and did not lose any weight at all. Clearly the calculation and recommendation for daily caloric consumption was not accurate for me. I then tried jumping rope faster and ended up with back problems, and had to drop the exercise for a month or so, but I continued the same diet. I gained weight steadily, even though I was still eating 90 calories less than the calculated caloric allowance for a sedentary person based on the MedGem test. The theory that I was not eating "enough" calories to burn proved to be objectively false because I did not lose weight.

I had a visit with the RD and asked him if there was any way my care could be coordinated by contact and sharing of information between my PCP, the RD, and a visit with an endocrinologist. Why an evaluation like this isn't done as a standard practice to begin with at time of diagnosis and treatment planning is absurd. If treatment planning can include the spendy services of an oncologist, a surgeon, and a radiologist there is no reason why it cannot include an initial evaluation by both a registered dietitian and an endocrinologist. Having an evaluation prior to treatment would document the body condition prior to treatment, and would make it less likely for patients to be dumped by professionals after completion of chemotherapy and radiation and left with a dysfunctional metabolic problem that promotes recurrence. Breasts are an endocrine gland, and breast cancer is an endocrine disease.

The RD promised that once I actually scheduled an appointment with an endocrinologist, the RD would send the Seattle endocrinologist and my PCP in Alaska the most recent RD note for me. My PCP had been following my situation and weight, and agreed to refer me to an endocrinologist.

I learned that endocrinologists are booked solid months in advance. In addition, several refused to see me, and said that they "limited their practice to conditions like diabetes and thyroid issues", and since my labs for those conditions were completely within normal limits, they would not see me . These specialists specifically listed "metabolism" as an area of their specialization and they still would not see me. Maybe they are so booked solid with just diabetes and thyroid kinds of conditions alone that they don't have to take on other metabolic problems. However, cancer treatment causes major changes our metabolic system, and as a direct result of that we need specialists who are educated and available to help us deal effectively with those changes.

Eventually I was able to get an appointment with an endocrinologist, who received both the clinic note from my annual physical exam with my PCP and the note from my most recent visit with the RD. That meant that an endocrinologist (who is trained in metabolism in ways that an RD is not, and who is able to order labs to establish whether a person is truly dieting and exercising or not) was able to order current labs that included both metabolic and endocrine values. Using those lab values, the endocrinologist was able to analyze and see objectively that I have been exercising and dieting without losing weight. The endocrinologist explained to me that my metabolism has become more efficient and that I am using insulin differently than I did in the past.

I think maybe what the endocrinologist is saying is that if there were 2 identical twins who ate exactly the same thing, but one had bc and been treated for it, the one who had treatment would digest every last shred of the food and the one who never had treatment would only be actually digesting some of it, with the rest zipping on by and out. I know that when it is said that the "metabolism is slowing down" it means that the metabolism isn't burning "hot enough", but since I stuck to the diet of added calories in order to have my metabolism "burn hot enough" AND I added more and more types of exercise and still gained weight, that was objectively proven not to be true for me.

I know I am using insulin differently than I did prior to treatment and that is one part of the problem breast cancer patients like me face. A second genuine cause is the permanently reduced testosterone level that keeps the muscle system from working like it did prior to treatment. These are not imaginary problems; they are very real permanent body changes.

Analytically speaking as a patient, I have no idea why any oncologist would consider themselves qualified to manage what is an endocrine disease after completion of oncologic treatment, without the help of an endocrine specialist as well as an RD to work with the patient. That seems like more of a historical artifact based on limited resource allocation than quality patient management.

As yet there is no magic answer for me. I asked the endocrinologist whether or not I could use a small dose of metformin to help. The endocrinologist is not opposed to trying that, although is working with me at present without it.

Again, it may be true that those bc patients who are much younger at time of treatment, or who have gone through natural menopause rather than chemopause, are less likely to have to deal with these problems because their metabolism has been less severely (or perhaps less permanently) affected.

But by going through all of the documented steps in seeking further treatment I have documented that the metabolism of a person who has been treated for breast cancer with standard therapies and who is chemopausal and has no other known disease is not likely to be successfully treated over time with just steady restricted diet and added exercise, regardless of the type of exercise. The reason is not a lack of reasonable effort on the part of the patient. It is because there is zero tolerance permanently for any deviation from strict diet and exercise. My impression is that this could be why HR positives eventually recur. It goes back to one of my original questions. How can weight maintenance or loss occur in spite of occasional exceptions such as having the flu, or having to spend a day sitting in a plane, traveling, etc. There is simply no flexibility at all for that. When I injured my back by trying to jump rope faster so that maybe I could actually lose some weight, and then had to reduce the exercise, the weight gain came flooding back,even though I maintained the strict diet. It requires genuine daily starvation for me to lose any of it again, just like it did during the first 6 years after treatment. I could not figure out why diet and exercise were not working. They were only working to avoid further weight gain, and they only worked as long as I didn't have any interruption of any type at all. Even the RD didn't realize this, and put me on an increased caloric diet.

In this situation this is a major change from previous experience, and the patient genuinely needs an explanation. Extensive daily exercise 7 days a week would work if nothing additional was eaten (i.e., one would still have to go hungry and in effect, starve most of the time, day after day, to actually achieve the weight loss), and never miss a day of exercise and diet once the desired weight is achieved. For the majority of these people, who lead lives that usually include other commitments and interruptions, it is not practical.

We need some kind of an readjustment of our endocrine system to be successful long-term to avoid recurrence. It is known that weight gain increases risk for recurrence.

Because of the fact that this problem is affecting us all in this way, I continue to question whether the extensive use of steroids that encourage weight gain during treatment is reasonable, if in actual effect it promotes eventual recurrence.

Remember that for stage I bc patients the recurrence rate is quite low to begin with. How many of these patients would never recur at all if they did not havethe increased weight gain from steroids and the inability to achieve the proper waist measurement or BMI? On the other hand, are the steroids providing significant reduction of recurrence due to their action in reducing inflammation? If stage I patients chose to decline chemotherapy (and the steroids that go with it) and instead followed an anti-inflammatory diet with exercise, what would their recurrence rate be?

http://well.blogs.nytimes.com/2008/0...st-measure-up/

http://www.cdc.gov/healthyweight/ass...alculator.html

http://well.blogs.nytimes.com/2010/03/16/doctors-and-patients-not-talking-about-weight/