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Old 10-05-2009, 11:56 AM   #21
AlaskaAngel
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On the road again

Hello Bill and Rich,

Day 5 here, and still stompin along.... I'm hoping I managed an avatar for you to see.... I could have lightened it a bit -- but this is a reality show, and it was just me and the eagles out there again this morning.

I am hugely interested in doing this to the "T", to find out if there is any way out of the dilemma of consistent daily exercise and controlled adequate calories = no weight loss.

I am continuing some rope jumping every day because I do think some aerobic exercise is important. I will even do the aggravatingly repetitious barbells (thanks, guys....) just to find out for sure what works versus what is evidence of imagination.

As you can see if my avatar works, the home of the bears is only a step away from the edge of the road -- there ain't nothing behind them trees but more trees and muskeg (and wildlife...), so it is a bit chancy in summer -- but this is October...... right???

A.A.
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Old 10-14-2009, 11:22 AM   #22
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Red face Exercise

I don't know how long the link will work, but I dedicate this post to Harrie, with affection:

http://www.cnn.com/2009/HEALTH/10/14...ef=mpstoryview

A.A.

(puff puff)
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Old 10-14-2009, 01:43 PM   #23
Jackie07
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Re: Breast cancer, and seeking advice

A.A.

I am very curious about how much your weight is right now. Are you currently at your ideal weight? Are you underweight? Are you overweight?

The reason why I am asking is because I was always underweight when I had serious illnesses. Right now I am eating a pretty balanced meal. With my irritable bowel problem seemingly gone, I am hoping to gain some weight to reach my ideal weight.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

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Old 10-15-2009, 12:07 AM   #24
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Re: Breast cancer, and seeking advice

AA, thanks for the link, I cked it out! Talk about a success story! I want to read YOUR story someday!!
Hows the program going?
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
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Old 10-15-2009, 12:45 PM   #25
AlaskaAngel
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Re: Breast cancer, and seeking advice

Hi Harrie,

Tomorrow is the big day....the halfway point of the month of exercise. I go in wearing the same clothes and shoes to be weighed by the nurse. I have stuck to the conditions I set for myself. Luckily, we have not yet had bad weather. I had to reduce the rope jumping and increase the brisk walking, as the rope jumping was bothering my back a little. I can't tell if there has been any change in weight or not. But I will report whatever I find out....

A.A.
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Old 10-15-2009, 12:56 PM   #26
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Re: Breast cancer, and seeking advice

Hi Jackie,

I'm considered overweight, not obese, by BMI. I'm very frustrated because it took 6 years to get from obese after treatment at 178 pounds to barely within my proper BMI at 153 pounds last year.... six years of steady effort.... and within a single year and WHILE continuing to diet, as well as exercising consistently during about 1/2 of that year, I gained back 20 pounds.

I am delighted to hear that by diet your IBS problem has subsided. It sounds like slow progress to increase your weight, but progress all the same. Do you use exercise in any way to help with your situation?

A.A.
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Old 10-16-2009, 07:58 PM   #27
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Re: Breast cancer, and seeking advice

A.A.

Be sure to check everything out (eg. you might be retaining 'fluid' in your body.) Since you have been continuring to diet and exercise, the source of the 20 lb. probably needs to be determined.

I haven't been exercising very much because of the shoulder pain and left-side weakness I've felt. That is probably one of the reason why my Irritable Bowel syndrome didn't go away fast enough, I think. Exercise usually helps correct minor problems.

I'm waiting to get my MRI result (missed the phone call from my family doctor this afternoon. He 'will call' me 'next week' - so it must have been O.K.)
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 10-17-2009, 10:01 PM   #28
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Question Groundhog Day #16

Well, the 30-something nurse (who has never had breast cancer, chemotherapy, steroids, or chemopause) explained cheerily to me that it usually takes her at least 35 days to lose any weight once she starts working out and dieting....

After 15 days of 1300 to 1400 calories a day and an hour a day 7 days a week of brisk walking a total of 3 miles a day based on the highway mileage markers, my weight is exactly the same as it was when I started.

Since this result is based on zero breaks from dieting and no sick days or missing any exercise, it does seem that is what it would take not to gain any weight, 365 days a year. The brisk walking is a daily challenge that is good for me and I think exercise in itself does help to keep cancer at bay. It also helps with balance, bone health, and stamina. But the extra weight is a significant risk factor so it has to go.

The idea that my diet has to be permanently restricted like this without even losing any weight is the real nightmare. There isn't a minute I'm awake that I'm not consciously and constantly hungry, even right after meals.

The question is open as to what it would take to actually lose weight, in addition to the exercise and dieting I'm doing now.

A.A.
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Old 10-17-2009, 10:34 PM   #29
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Re: Breast cancer, and seeking advice

Hi Dianne,

I was reading through all the posts again to look at all the suggestions, and wanted to answer the questions you asked.

The swimming pool here is used for the schools and has very limited hours when it is open for adult swim, 5-6:30 AM. Also, because I do not live in town it would require a similar commitment as going to a gym, 2 1/2 hours per trip plus the gas to and from, as well as leaving around 4:30 to 5:00 AM to get there, which isn't practical. Our private road is not generally plowed until late morning at best, and weather changes very rapidly and unpredictably here so it can mean extended delays getting back home. Even though I am self-employed, I do have have work to turn in on time, and often have unscheduled overloads.

Snacks like cookies have been entirely off the menu other than the whole wheat persimmon/oatmeal cookies I made last December for Christmas. I do eat the fresh fruit suggested in the 1300 calorie diet that the RD provided, which has very specific limits; no more than 10 fresh grapes, for example. Sugar has been off the menu for 4 years now. The only fat I eat is a pat of butter per day, 3 half walnuts, whatever is in the salmon I poach, 1 teaspoon of olive oil a day, the 3/4 cup a day (maximum) of 1% milk, and what is in the 2 tablespoons of freshly ground flax seed.

A.A.
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Old 10-17-2009, 10:51 PM   #30
Jackie07
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Re: Breast cancer, and seeking advice

A.A.

35 days sounds reasonable. You may just have to keep on walking for 20 more days to see any change.

Are you following a certain type of diet? 1300 - 1400 calories sounds like a good diet number, but I wondered if the 'type' of the calories would make any difference.

There was a 'fad' one time that allows mostly protein intake because it will not burn as fast as carborhydrate, so one might stay 'full' a little bit longer. To lose weight, one needs to lose the body fat; and the fat won't start to burn until the energy supplied by the food you eat has been exhausted. Another thought is that you might want to add (trade) some exercise that focuses on certain part of the body (fat). You might want to consult an expert and/or adding something like an ankle 'weight'.

I also heard of people drinking green tea to lose weight because the ingredient in the tea decreases appetite and at the same time keeps the energy up because of the caffein. Since it's a proven anti-oxident, it might not hurt to give it a try.

Are you able to get a walking partner? Staff in our hospital formed a 'walking/running club' after Jeff Galloway had presented a program here last year. We see them in the 'walking trail' sometimes. Our oncology social worker looks a lot better now after losing 15+ lbs.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 10-18-2009, 12:41 AM   #31
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Re: Breast cancer, and seeking advice

Again, you might try some form of weight training which seems to have more effect on weight than does cardio.

Does your calorie restricted diet include many blood sugar raising carbs?

Maybe you could bring up Metformin to your doc(s). Along with anti cancer/cancer stem cell potential, a common "side effect" is appetite suppression.
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Old 10-18-2009, 01:51 PM   #32
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Groundhog day 17

Hi Rich and Jackie,

LizM was the one who suggested considering the type of calories, too. The web site I listed for StephN that gives the glycemic index for foods also gives the fullness factor for the food, so I'm going to see if I can use that and combine Liz's suggestion with your's and Rich's to see if the type of food calories (glycemic value) makes a difference for me.

The green tea is a problem in that I gave up caffeine 5 years ago and would not want to restart it.

There is one neighbor who might be willing to walk together if our schedules don't conflict. I used to work where she works, which involved a lot of work outdoors, so we share that history. But at 17 days of walking I have not seen a single biped yet on my morning hikes.

The main blood sugar raising carbs in my diet so far would be the breakfast, which is home-made slow oatmeal (moderate glycemic index) with a dozen raisins and a dozen craisins (high glycemic index). I do eat bread at lunchtime but only whole grain, which has a low glycemic load. I haven't eaten things like any noodles or corn (or any corn product) in several years, although I do eat a small portion of brown rice about once every other week.

I am going to have to use weight training of some kind very soon, as we will be traveling and there won't be as much opportunity for daily scheduled walking.

But the one question no one has responded to yet is how to deal with the rare time period when I can't do any form of exercise, such as a day when we are traveling; often I am working as we go and there is zero time for any type of exercise beyond what could be done in a car seat or in a plane seat. Is the only answer that I should not eat that day? As you can see from the first 15 days, it is not an option to eat and not exercise every single day. That was my downfall last winter. I continued to diet conscientiously but exercised less often, and I gained weight immediately that did not come off at all with months of steady exercise and diet this summer.

A.A.
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Old 10-18-2009, 02:03 PM   #33
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Re: Breast cancer, and seeking advice

Can do some searches for ideas:

http://www.bluesuitmom.com/health/pe...ztravelqa.html

http://www.bellaonline.com/articles/art40814.asp

http://www.google.com/search?q=hotel...ient=firefox-a
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Old 10-18-2009, 02:18 PM   #34
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Re: Breast cancer, and seeking advice

Thanks, Rich, for some ideas for travel days. I usually work into the wee hours to start the catch up with my work and then get up again very early to start it again, and run right up to checkout time while my SO brings in decaf and some fruit for me. So I can't throw in room exercises. Straight truth. I need to know whether to eat or not on those days.
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Old 10-30-2009, 02:23 PM   #35
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Unhappy Groundhog Day #30 - on the road

I saw the RD in Seattle, and because I hadn't been weighed since seeing my PCP on the 15th, I used his scale, which showed 1 pound of weight gain. This could be just a minor difference in the scales or clothes so my impression is that consistent dieting and consistent significant exercise is only working in the sense that it limits further gain to some degree.

So far, here are the differences between what is commonly believed about simple "postmenopausal metabolism" for this 58-year-old chemopaused woman:

"Maintaining a moderately reduced caloric intake will contribute to weight loss." - Not true for me.

"Maintaining a diet too low in calories can result in no weight loss due to the body's tendency to reserve energy." - True for me.

"Adding moderate physical exercise contributes to weight loss." Jumping rope for 30 minutes a day every single day for 3 months is more than moderate physical exercise, but did not result in weight loss for me when added to a diet too low in calories.

"Maintaining a moderately reduced caloric diet plus increasing exercise to 1 full hour every day of the week will result in weight loss." I have walked 3 miles a day (as measured by the highway paddle markers, not my imagination) when walking forward. When walking backward (to "mix it up" and use different muscles) for half of the walking, I have walked 2 1/2 miles a day because of shorter more cautious steps. So far, the goal of weight loss is not true for me at 30 days out. In that entire period, I missed 3 days of exercise. I have done my morning walk at every town where we have spent the night, but twice was limited by work load and once by being on a boat that was pitching and rolling too hard to do laps on board as I had planned to do. The difference in weight at the RD's scale may in fact be due to the 3 days out of 30 when I was unable to exercise but did diet.

So where do I go from here? In talking with the RD I said that I can try making the hour of daily exercise 1/2 walking, 1/4 weight resistance, and 1/4 aerobic to see if that makes any difference.

But at this point I also want to see some genuine personal commitment on the part of providers in figuring out how much of what they believe to be true about diet and exercise for a 58-year-old chemopausal woman is true, and just how much of what I believe to be true about diet and exercise for a 58-year-old chemopausal woman is true. So I am seeking an appointment with an endocrinologist and if I get it scheduled for my return trip through Seattle, I have asked the RD to work with the endocrinologist and my NP to help me define what it does really take for me to lose, say, a pound a week or even a pound a month, and keep it off. Does it take 2 hours a day of heavy exercise, or what? We already know it takes consistent dieting on top of consistent exercise, for me.

All my labs are normal except for slight increase in my LFTs. So if I am not diabetic, why do I have to eat like one just to prevent weight gain?

At present it appears that I must exercise a full hour every day and stick to the below-maintenance caloric diet every day from now to eternity just to not gain weight. I want more proven answers to these questions.

A.A.
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Old 11-01-2009, 08:10 PM   #36
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Re: Groundhog Day #30 - on the road

Hi AA. I sense the frustration in your posting and appreciate how aggrevating the lack of "numerical" progress can be. From what you have shared and the course you are on I believe you to be on the right track. Post chemotherapy/post breast cancer is typically a weight-gaining period. Any stability in weight should be applauded because it is HARD work! I know that doesn't make you feel any better but it should be noted. Remember to give yourself credit for what you have accomplished, even if weight is not responding as desired. I encourage you to continue working with the RD and endocrinologist. Also, I encourage you to keep in mind that even if your weight isn't changing as you wish you are actively doing everything recommended for prevention of breast cancer recurrence. Not to mention prevention of just about every other chronic illness.

Keep going. This will pay off.
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Old 11-05-2009, 11:44 PM   #37
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Re: Breast cancer, and seeking advice

Hi Tanya,

I am still traveling so have not been online recently. Thank you for your continuing support and encouragement.

I do believe that exercise itself is preventative. However, as a patient I find it very uncomfortable to see that the ongoing standard of care involves treatments that end up essentially significantly contributing to recurrence for many of us by way of weight gain that is essentially unavoidable over the long term.

In starting this thread my purpose has been to "be" the guinea pig, to see what it takes to reduce my BMI so that other patients who might be in similar circumstances have some genuine basis to go by in working on their own situation. So the problem here is more than just my own frustration. I'm one of the luckier patients. If I had the responsibilities of trying to raise kids or handle eldercare in addition to my own weight/breast cancer issues, or had to hold on in a job I disliked, or had other concurrent diseases to cope with, I wouldn't be able to put the time and effort into the exercise and diet that I have been doing.

I can't believe that the average breast cancer patient would be able to permanently exercise and diet to this degree day after day, month after month, year after year, with no hope of any weight loss. Yet that is what I/they would have to do.

So, what I think is really important about this thread is not whether I personally succeed with weight loss (as much as I would like to). The importance of this thread is to get a clearer understanding of just what is blocking weight loss for those like me, and how to deal with it successfully. Until we do, the treatments given under the standard of care will continue to foster recurrence due to weight gain. Diet and exercise can help, but again, mostly for people like me who happen to have lives that are not as complicated as the lives of average breast cancer patients.

I still suspect that patients like me are stuck in a no-win situation where we are not actually diabetics, but our physical condition is similar, and that we need some medication similar to that used by diabetics, perhaps even just at lower doses, to make progress.

At present I have run into a roadblock. It turns out that the endocrinologist I saw in the past, who has an excellent reputation, is no longer affiliated with the facility where I have been treated. To see that endocrinologist, a patient has to "register" and pay $100 in advance, without any definite appointment, with the actual patient visit being a completely separate additional charge for services.

I am discouraged and unsure where I am going to go with this. I am not sure I want to support a health care provider who works under such a policy. I already find it rather unprofessional that medical providers such as endocrinologists have been so slow to work on getting a better understanding of these aspects of metabolism on their own responsibility. After all, breast cancer is an endocrine disease.

AlaskaAngel
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Old 11-09-2009, 06:45 AM   #38
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Re: Breast cancer, and seeking advice

AA,
I admire your mission and believe it to be a very important one. I also find your statement of breast cancer (hormone sensitive) being an endocrine disease to be very thought provoking. Weight gain during and after breast cancer treatment is very common across the board of tumor types and is poorly understood. Women who have triple negative disease also experience weight gain. It is an area that deserves more attention in the research realm. As a practitioner I try to catch the weight gain before it starts. Of course, I work in a med-onc office and therefore only catch the women who are treated with chemotherapy. I see them starting at the beginning of treatment, through treatment and then meet when treatment is complete to really get them going on some survivorship goals (i.e. very well balanced, low fat diet and regular exercise). We have developed a survivorship program at our center which I understand to be a rarity but very important. The IOM put out their report "From Cancer Patient to Cancer Survivor: Lost in Transition" in 2006 calling for a better system for survivors. This is an area of passion for me and I believe it should be standard of care in all centers. Currently, our system really drops the ball in this area but I do see slow improvements.
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Old 11-09-2009, 07:10 AM   #39
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Re: Breast cancer, and seeking advice

Just got this article in my inbox today. It describes the need for survivorship care. The form in the article is the one we are implementing here.

http://caonline.amcancersoc.org/cgi/reprint/59/6/391
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Old 11-09-2009, 07:52 AM   #40
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Re: Breast cancer, and seeking advice

Quote:
I also find your statement of breast cancer (hormone sensitive) being an endocrine disease to be very thought provoking.
Tanya,

My internist agreed with me immediately when I said this to him two years ago. He is board certified in geriatrics, and sees many cancer patients of all types. He remarked that breast cancer was a totally different cancer from lung cancer or colon cancer. He also said the reason he believed it to be an endocrine disease is that it is far more common among women who have not had children.

I have spent the three years since my own dx doing extensive research through the medical literature, and have seen abstracts and papers on many different types of hormone interactions and their relationship to breast cancer (i.e., hypothyroidism and the relationship of levothyroxine to sex binding hormone globulin, the relationship of SSRI's to the body's estrogen metabolism, etc.), and it seems that pretty much anything that can disrupt or affect the estrogen balance in the body can affect a signaling pathway that can be involved in breast cancer. Thus, the entire endocrine system should be evaluated in each patient to determine how an imbalance in any part of it can contribute to breast cancer. Just looking at the breast is missing the boat, IMO. We need endos to get on board, because their involvement is the key not just to treatment but to prevention.

Hopeful
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