Cancer 2.0: The Sequel

More on “Do I have to gain weight on Tamoxifen”?

Posted on: April 4, 2011

The fear of more weight gain weighs too heavily on most women when the face the list of side effects of Tamoxifen.  I dug around a bit to answer the question “What is the average weight gain on Tamoxifen.”

Source: Random people on the internet

There are many blogs and discussion groups with people discussing out of control weight gain while taking Tamoxifen. These people often list gaining 25 pounds or more and unable to make it stop.  From what I can glean, these are often people who have never had to watch their weight before or those who have routinely had problems controlling their weight.

Most people, I think, know the difference between junk foods and healthy foods, but are startled when they can no longer depend on life long habits to maintain a preferred weight. I felt chubby as a teenager, so learned all the caloric values for everything at an early age, then earned a degree in nutrition (among other things) when I graduated from university.  I forget sometimes that most people have not had this extensive training in how the body metabolizes food.

Our metabolism changes as we get older. Many women gain weight during menopause… usually in their 40′s or 50′s.  If you are being treated for breast cancer during this time, this effect is magnified.

During cancer treatment, many don’t realize the changes in minute-to-minute activities of daily life.  Sitting more, walking around less, doing fewer things due to fatigue without adjustments to the diet easily lead to weight gain, even though it feels like nothing else has changed. Most of our energy is expended through tiny movements… even fidgeting can be enough to keep weight down.

Source: A university study
” A meanweight gain of 1.2 Kgs was seen in all [Breast cancer]  patients; however, weight gain was not significantly different for those receiving tamoxifen vs. those not receiving tamoxifen, ”

This study looked specifically at weight gain caused by Tamoxifen and weight gain in general during breast cancer treatment. They found an average weight gain of 2.65 pounds in all patients.  Those taking chemotherapy tended to gain the most weight.

I think this is very significant to know that the average gain is just a few pounds, not these 25 pound+ values plastered across the ‘net.

Other conclusions from this study:

  • Age at diagnosis had a correlation to weight gain in all groups.
  • The moderate weight gain observed in patients is about the same as weight gain among  disease-free people the same age.

Other interesting comments from medical doctors:

“Weight gain can be a side effect of tamoxifen and this is sometimes due to water retention but at other times a consequence of a eating more either due to a increased appetite or mild nausea – “to settle the stomach” .

“Finally but of equal importance is the attitude of patients to food during treatments. Many people have had to be careful with their calories before they even get their diagnosis. Unfortunately, this tends to go out the window after their diagnosis – “dammed if I’m going to diet now I’ve got cancer!” “

What about Uterine Cancer?

Finally, the other most scary side-effect of Tamoxifen is possibility of uterine cancer.  A friend of mine contacted three medical doctors who are personal friends for advice on Tamoxifen… All three came back with resounding “Take it”.  They all mention that the risks of uterine cancer are very small.

As for all women, one key sign of problems is bleeding at unexpected times.  If this happens, don’t wait until your next checkup, go immediately to your oncologist to investigate. It’s all about early detection.

Sources:

“Weight gain associated with adjuvant tamoxifen therapy in stage I and II breast cancer: fact or artifact?” N.B. Kumar, K. Allen, A. Cantor, C.E. Cox, H. Greenberg, S. Shah and G.H. Lyman, H. Lee Moffit Cancer Center, University of South Florida, 1997

Weight gain (and Cancer Treatments) from Cancernet.uk. Interesting article looking at causes of weight gain and ways to combat it.

Tamoxifen from Cancernet.uk. Description of all aspects of Tamoxifen.

12 Responses to "More on “Do I have to gain weight on Tamoxifen”?"

I was looking for some help on losing weight while on tamoxifen and I came across your page. Frankly, it disturbs me. If you have never sat in a chemo chair, you have NO idea! While I was going thru chemo, I swam every single day. I was exhausted and yet I forced myself to do it because I was determined not to gain the 12-15 pounds that my nurse told me I would probably gain. Well, ya know what?? I gained it! Not for lack of exercise or for lack of eating correctly (my husband also has a degree in nutrition, and is a physician that specializes in weight management). After chemo and radiation, I managed to lose 10 pounds only to start tamoxifen a few months later. Guess what happened? I’ve been on it a year now. My weight is 20 pounds more than what it was before chemo. I exercise daily…cardio, weight training and swimming…I eat healthy and if the damn scale budges at all, it is ounce by ounce. I’m talking 4 ounces a week. It’s ridiculous! I don’t care what some University study says. How dare you say “I think this is very significant to know that the average gain is just a few pounds, not these 25 pound+ values plastered across the ‘net.” This is real for a LOT of people who are doing the right things to attempt to lose weight.

I’m sorry your experience has been so different from mine.

I am writing my personal experiences based on my background as a nutritionist and a three time cancer patient. I have sat in the chemo chair feeling bald and fat (swollen and 15+ pounds heavier). I have not encountered first hand anyone who has gained a lot of weight with Tamoxifen. This is supported by all scientific research I could discover. I spent several hours looking for any research on the topic of weight gain and tamoxifen and reported the few scientific studies I found on the topic. I reported about the AVERAGE weight gain – a far different thing from what happens to individuals.

As I’ve said repeatedly in my writing, each individual has a unique way of responding to each treatment. There are many women, scared to take Tamoxifen for fear of more weight gain. For some, like you, it may contribute to more extreme problems. I understand your anger where even the best healthy behaviors don’t result in the promised results. Hopefully, in time, your efforts will pay off, in the long run, as your body adjusts to the medication. Weight control is never easy and there are times our bodies are at odds with the purported “right thing” to do.

If you look at other articles I’ve written, you will see that I am constantly searching for better ways to live through cancer treatment, using the same design techniques I use in my professional life. Every time there is something we want to create, like a healthy life, there always will be obstacles. Each of us gets a unique set of challenges – we give up or keep designing strategies until one works. You sound like someone who is working hard and will find what you need eventually.

I’m writing of my research, my failures as well as my successes, hopefully with compassion and the understanding I can only speak to my journey. I’ve chosen to let go of anger about the unfairness of it all – no one has worked to eat better, exercise and avoid destructive habits than I have, yet I have had cancer twice in ten years and one recurrence. Each step of the way there were things I was very unhappy about, yet I choose to remember each day is one that I am still alive and this could go bad again at any minute. I’m not wasting valuable minutes of my life with what has gone wrong or the unfairness of it all. I have my moments, but this has allowed me to have many happy times in this past 18 months of treatment.

I do know my pain, and I have no way of understanding yours. I’m sorry what I wrote was not helpful to you.

Hopefully there will be more studies done that can lead to better advice for tolerating hormonal therapy. There is nothing about cancer that is fair.

If you haven’t experienced anyone first hand that has gained weight as a result of Tamoxifen, Femara or any of the other drugs they want us to take (I am a nurse by the way)… go to http://www.breastcancer.org and read. There are tons of ladies on there that have put on weight and can’t get it off. I’m sorry but you are way off here. I spoke to my Medical Oncologist about this very thing and he actually told me that Tamoxifen has some steroids in it which make you “gain” weight. Of course if does affect each woman differently. As for your 3 experiences with cancer I am very sorry. I myself have had 2 and at very different ages in my life. Good luck and best wishes to all ladies trying to be successful with wt. loss and living a cancer free life. That is all of our goals. For now simply exercising and cutting calories doesn’t seem to be enough to take the weight off.

Thank you for responding.

I’ve never heard the steroid connection you mention, so I googled it. It appears bodybuilders may take Tamoxifen to counteract increased estrogen in their bodies, which is especially a problem with steroid use for muscle building. In particular they want to minimize “man-breasts” (gynocomastia) and increase testosterone levels.

I’m writing another entry on Tamoxifen (Sept 14, 2012). You bring up good points.

Best wishes to you as well!

I know 3 ladies who gained quite a it of weight with Tamoxifen after chemo & radiation. One – an assistant in a cancer center gained 40 lbs., my Mom’s hairdresser gained 50 lbs., and myself – stay at home housewife gained 25. I don’t care what the professionals say either—it’s a fact b/c we all have different matabolism.

I just stumbled across this site. Thank you! I was starting to think it was me. I have been on this drug for 2.5 years, and have gained 40 pounds. I swear if I knew this was going to happen, I would not have signed on for Tamoxifen. I am 46 years old, and my doctor informed me I will be “one of the lucky women” who goes through this menopause twice. So, will I ever go back to what I weighed before, or will I just keep gaining?

I’m sorry you have having such a problem with weight gain. Think back to the gain, has it been constant, was it faster at first and now less or are you gaining more now than you were. The doctor’s comment on menopause, while not fun to hear, is a decent one. Your metabolism has changed, so you need to learn about your body today and how it responds to food.

The only way to get control over weight, no matter what the cause, is to understand your current eating and activity patterns. First, learn what you are doing, then identify things that might help stabilize weight or help you lose.

A food log is probably the best tool – write down everything you eat. Measure or weigh portions. One week is generally long enough to get an idea of what you are doing. Don’t change anything. I have been using one of the many free online food journal site. I chose fitday.com since it was the first one I encountered that seemed to have what I was looking for. There may be better ones around, but this has been sufficient to get general idea of what I’m eating.

My weight had been stable for several years, then seemed to instantly start going up. I kept track for a week and was able to compare to the previous time I used the site to lose weight, so I could see how my calorie intake/activities had changed.

For me, main culprit was nibbling at leftovers while I was doing dishes after dinner. A hundred extra calories a day = gaining 1 pound a month.

First goal, can I stop the gaining? This is trial and error process – cut back on calories and/or increase activity and/or move to more natural, less processed foods. Once stabilized, you can see how many calories you need to stay at a weight. Cut back by 500 calories a day to lose a pound a week. Look to change WHAT you eat, to healthiest foods possible. You will be hungry too often while eating foods lacking in nutritional content.

This is what works. I am professionally trained in this, and have spent much of my life learning how to keep my weight where I want it.

Learn about cause/effect of foods by simply observing how you feel. Eventually, one has to re-think relationship to eating – remembering we are eating primarily for nutrition and not for the million advertised slogans stuck in our heads prompting us to eat calorie dense/nutritionally vapid foods.

This isn’t easy, but at the same time, it is not hard. Once you find what works, then you can stick with new patterns without much effort or feeling hunger.

I think that the problem may be your researching methods. I am a medical researcher and have been trained in effective research methods. Did you do your searches on the internet, like Google? Info gleaned from these types of sources are unreliable. However, learning boolean logic and how to use PubMed is very valuable, particularly building searches with the MeSH builder. Also, sites like Cochrane, CINAHL, Ovid are all very reputable, though you must have access through a library system. Structuring your search prior to searching is very helpful and gets you the info you really need.

I’m also a current breast cancer patient and I’m on Tamoxifen. I didn’t eat for 4 months because of nausea and weight gain (15lb), but I could do nothing to stop it. Even now, I kickbox, do yoga, elliptical and I only consume 1500kcal or less/day, depending on activity. Chemo changes the body’s metabolism. It is proven.

I agree that chemo can change the metabolism, and also the stress to our bodies from the surgeries and treatments. My osteopath mentioned that it is not uncommon for our bodies to switch to “weight gain mode” when stressed – here I am talking physical stress, not mental. I have not seen much written on this, but actually may explain the varied personal experiences and published studies. There seem to be many women struggling with weight after treatments end, and most of us are taking something like Tamoxifen during this time.

I for one am absolutely delighted to read about your research! There is so much negativity on breast cancer treatment and its side effects and I applaud you for your positive attitude and approach! It is about time someone provided some hope and assurance!

I am 35 and have recently been diagnosed with stage 2b breast cancer. One month ago I had a complete mastectomy and I am on my second treatment of FEC chemotherapy. I will have 6 treatments in total followed by radiation and 5 years of Tamoxifen. So far, dare i say it?! The chemo treatment has been a pleasant surprise, especially compared to the many negative stories I read online. I consider myself fortunate to say that I have experienced minimal side effects and I have plenty of beautiful bright head scarves to wear to cheer me through the hair loss! Maybe I will even rock a complete new style as I experiment with the returned hair!

With regards to the final treatment of Tamoxifen, I am not looking forward to it but it seems clear to me that the benefits surely outweigh the negatives and with thanks to your article I have confidence that it will be possible to stay trim! I am a great believer in positive thinking, thoughts become things ladies so lets all think positive!!

I wish you well on your journey and am pleased that anything I wrote can help. Everyone I know who was in treatment the same year I was are all doing well. I found I reacted differently each chemo round. Many find it easier than radiation. Glad to hear you are off to a good start. Glad you got some good scarves. I stocked up on a variety of wigs from a discount place online, since I cannot tie a scarf. The point is to find what feels best to you.

I’m so happy to hear your attitude, you are so young, and this is one of many life experiences. Hang in there.

KLM

PS I see your dressing gown connection: I hate hospital gowns, so made my own out hospital-like blue fabric, with big armholes and easy on/off so I could wear something that fit: http://canceragain.wordpress.com/2010/03/04/cinderellas-new-gown/

There is an index with short description of articles from from my blog at http://www.auxmaillesgodefroy.com/treatment_blog – may prove helpful as you prepare for each step.

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Not a second time

One in 9 women will have breast cancer, and everyone will be in a position to support a mother, sister or friend as they go through treatment.

A few, like me, get the diagnosis more than once.

I wish now, I had more records of how I got through it the first time – I remember mainly the support and love of my friends and how much it helped, conveniently forgetting the immediacy of day to day emotions and events. So this time, I’m making my notes public, in hopes that this can help prepare others for the difficult months of treatment that precede the rest of our lives.

In 2001, I was diagnosed with breast cancer. I followed standard treatments and as many alternative aids as seemed appropriate. Since then, I’ve been doing all the requested follow-up treatments and spending the time attempting to live as healthy a lifestyle as possible, expecting to remain cancer free.

Dec 2009, I discovered a lump while showering. The biopsy came back mid-January 2010 showing a tumor composed of invasive cancerous tissues. It was most likely something new, rather than a recurrence. So far, the prognosis is good.

This is my story, as it unfolds.

Table of Contents

To find articles on specific topics, see the Table of Contents.

This provides a full listing of dates with summaries of articles to find specific topics that interest you.

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