this might seem silly...

[suzan w]

In light of the pain, suffering, heartache etc.that we go through on our unplanned journey through life with breast cancer...my questions this morning may seem trivial. BC (before cancer) I was a physically strong woman. Yoga, biking, hiking...During treatment I feel like I lost most, if not all, of my "core"strength.
I have studied the side effects of arimidex...and believe me, I had plenty!
Now for my questions! It has been 3+ years since I swallowed that last tiny white pill. I have no stamina. I still have pretty significant muscle weakness. I exercise daily, eat well (vegan), take a few supplements. I have 25 pounds (gained during treatment) that will not go away. To look at me one one might think...so what's the big deal? Well...mentally I feel that my lack of physical strength is still making me feel "sick". Does this make sense? All of my doctors poo-poo this and say things like..."oh, you are in great shape for a woman your age" (63). Blah blah.
Some days I still feel like cancer still somehow manages to get the best of me. I should feel more gratitude...
Even on sunny days I am still so ANGRY!
Thank you all for being here! Thank you Joe and Christine ( :-) ) for creating this amazing forum.
Phew...I feel better now!!

[snolan]

I have felt the same, as a competitive mountain biker I feel I can't ride at the same intensity that I used to. I think I have come to terms that it is what it is and at least I can still enjoy riding, just have to deal with coming in last place.
Suzanne

['lizbeth]

I was wiped out after treatment. I kept trying to rest and just felt tired all the time. I walked a lot but felt 20 years older than before.

I worked with Dr. Joe at New Horizons Physical Therapy who specialized in exercise for cancer survivors. It was rough, but after several months I was back up to a pre-cancer level of fitness. It was so hard in the beginning. After a 2 hour session of treadmill and resistance training I would go home and take a nap. I remember the first day how shaky I was. Just so weak.

After several months it was an amazing difference. I felt like I had my life back. I can go hiking for hours and do lots of yard work.

I wish for you that you will find the magic solution to regain quality of life.

[AlaskaAngel]

Hi Suzan W,

It depends.... on age/menopausal status at time of treatment. It happens mostly to those who become completely menopausal with treatment. Those who are younger are at higher risk for recurrence but the trade-off is that they get to keep more of their pre-treatment characteristics like strength and faster metabolism for keeping the excess weight down. So some replies here from those with bc who are younger recommend intensive exercise, which actually doesn't cut it for those of us who have done chemo and are very menopausal.

At OUR age (I'm 62), exercise plus what had always been a weight-loss diet before treatment does not even result in weight maintenance. The only method that has been successful for me has been to combine that reduced diet with fasting a couple of days every week on a permanent basis -- which then results the catch-22 of very low energy and very low stamina.

It IS exhausting, and it does make one both angry and sad.

A.A.

[Becky]

This is hard to respond to because after 8 years for you and now 9 for me, we have no idea what we would feel like if this never happened and now we are that much older. Some of it is getting older but how much? Or does the cancer treatment contribute to all this - I'm sure it does but how much?

I struggle with weight and its worse now because a few years ago I injured my ankle and so, no more running so that has made a huge difference and I am 25 lbs up but I do contribute it to lack of hard exercise. Gerry (on this board) was able to lose 50 lbs by following weight watchers and she is in our age group (mid 50's to mid 60's). I have considered this because I am not aware of portion sizes too good and I am used to eating whatever I want (because of running 35 miles a week). I am still on Arimidex and was hoping in 2 years when the 10 years are up, I would have a better time of it. I am sure not.

Keep the faith. Have you tried weigh training (with weights etc). I have not and should. Ugh. I feel your pain. Just wanted you to know its real and affects many of us.

['lizbeth]

A.A.

Are you calling me young? Thanks! I would say that my body has not decided on a menopause status yet, and it has been indecisive for many, many years. My metabolism sucks and I have trouble building muscle. Still I adore exercise, but diet is my biggest challenge.

My hubby went through the program at the age of 72 and he has cancer and is anemic. It made huge difference in his health as well. And I appreciated the resulting physique. But it is hard to stick to a program unsupervised.

Even my doctor said he went to an exercise class because he likes someone telling him what exercise to do. He is in awesome health. So perhaps a tai chi or senior yoga class with lots of breathing, or a senior aerobic class would be something to try for a few sessions?

[SoCalGal]

I am lucky in not having the weight problems. I think dropping gluten and dairy is helpful and balancing omega's with the help of a nutritionist WOULD result in weight loss. One of the problems with fasting is it slows the metabolism down even more. I think that feeling bone tired is a side effect of treatments. The only things that I can do to help my mood and body is to keep moving, as if THAT is my treatment. I force myself to get exercise, and I mean FORCE. When I push myself, on an almost constant basis, I find that I actually get over that hump of exhaustion. For me, going to dance class is my greatest escape from my own chattering mind, and it is an hour or two where I am the same as everyone else, just another person dancing. No private info is exchanged, no one knows I'm a survivor or sufferer. There are moments in class when I wonder if I will just drop dead, I am so exhausted, or my heart pounds so, but then I think, well, it would be a great way to go! I would recommend joining a different (appropriate for YOU) movement class every day of the week, and see how you feel after 2 weeks. Classes to consider: GENTLE or restorative yoga, drumming, music and movement therapy, yoga therapy, private pilates on the reformer, beginning spinning or any other gym classes on a beginners level, swimming, riding a bike, well, you get the idea.)

[tricia keegan]

I'm struggling a little too and like Becky have remained on Arimidex up to ten years (8 years out now) I walk ninety minutes most days and try to be active but we're all getting older of course and prone to slowing down. I personally feel my Arimidex side effects are getting worse (joint pain and stiffness) I don't know if this is age or the length of time I've been taking it as we are the guinea pigs on this of course! Sometimes I'd love to be able to see twenty years in the future and know exactly what we should be be doing or taking to feel far better after BC, oh and I'm fourteen pounds overweight too but hats only because I quit smoking eighteen months ago and was very slim before that.

[Jackie07]

My sister-in-law does not have cancer or any other health problem except being overweight (near obese) for the past 24 years since her youngest was born. She has 4 daughters and the oldest one is catching up with her. She's a nutrition professor and certified dietitian. Her daughter is a nurse with a master's degree and has two teenagers. Sister-in-law has tried everything - diet, exercise, nutrisystem and now weight watcher which seems to finally give her some hope.

[sarah]

Well I'm 9 years out from the second time around and I gained 15 pounds in chemo and have kept most of it on. I walk, I go to the gym and other stuff and eat healthily mainly fish and veggies and the weight stays and my energy is terrible. I have much less stamina. It's disappointing but I am so happy to still be here that I have decided to concentrate on that. I now may have a permanently swollen hand and arm (right side!!) due to an insect bite and so I'm now saying to hell with it, I'll do what I can.
So my advice, which is free and worth just that, is don't worry about the weight and energy too much. enjoy life and adjust to the new you. The other option just isn't appealing!
hugs and love
sarah

[jaykay]

This may sound like a silly question since we all see doctors on a regular basis - but have you seen an endocrinologist? You never know...

That being asked - I am 62 and went through menopause at 45 or so (hard to remember!). I never had a great metabolism and always had to watch what I ate and exercise religiously to maintain what was a comfortable size for me. I didn't gain weight on Femara the first time around, minimal on Tamoxifen. I stopped smoking 5 years ago and put on 13 pounds in a year (like you, Tricia).

After trying my usual tricks, went to Jenny Craig to learn how to eat. Portion control and small snacks throughout the day. SoCalGal is right - fasting just slows down the metabolism. I do weights twice a week and walk on my treadmill 4-5 times a week (really fast walking). I didn't gain any weight on chemo and hope that I won't on my second stint with Femara.

My stamina is okay; I finished chemo 6 months ago and it's taken a while to get back to where I was - and I don't even remember what that was! I push myself every day - the endorphin rush from the exercise is worth it, though.

Bottom line, lots of contributing factors for women our age and cancer doesn't help (duh). I just try to keep moving.

Best
Janis

[AlaskaAngel]

Well, pictures are helpful but the only ones who usually post their age are those over 55, so it is hard to tell?

Chemopause is faster aging, so I agree with Becky, it is aging that is happening, but very sudden and more complete aging for those who are fully menopausal.

Yes- fasting slows the metabolism. It just is one sure way to lose weight as long as one sticks with it long enough, which is pretty tough.

There are various techniques for mood improvement and they help to get one to exercise even though they don't result in any significant weight management, since weight training takes building muscle, and to build muscle one has to have a decent testosterone level, and those who are chemopaused and fully menopausal don't have squat for a testosterone level. Add that to a slow metabolism and there is no weight loss, and just fatigue.

Which is what I thought was pretty well described in the original post.

Regular stretching helps a little. It is just hard to change over to saying no to just about everything that one has worked a lifetime to be able to enjoy, and focus on workout and pleasure denial as being the primary focus of time spent.

[Aussie Girl]

I think Susan W has put her finger on the heart of the cancer experience and I don't think it is silly at all. Even if you are lucky enough to have got through the whole treatment process and are NED and have a good prognosis, there is a tremendous amount of loss happening. (For those of you who are stage IV and still managing to smile - you are inspirational).

Some losses are easier to take than others and which ones really get to you is a very individual thing. If being physically strong and active was core to your conception of yourself and moving was a great delight, it is no wonder you feel angry. It's something that truly needs to be grieved over. That grief is going to recur and you have to be very kind to yourself on those days (and may be scream and cry a bit). Meanwhile you have to get on with what I'm sure you've already been doing - getting on with things, enjoying the strength you have and having gratitude for the blessings in your life, large or small.

I'm only at the beginning of my cancer journey and my losses are yet to be fully tallied. However, I remember going through a significant period of grief in 2005/2006, when I was diagnosed with gluten intolerance. I'd already been severely lactose intolerant since 1997 and I thought I'd got over never being able to have dessert in a restaurant or cake with my black coffee when out with friends. (and don't tell me fruit by itself is a dessert because it is not!) Suddenly things seemed much worse. I had to revise everything in my diet at home, explain endlessly to other people what I could and couldn't eat, watch hungrily while others ate their entrees, main courses and desserts in restaurants, while I got steak and salad every time (oh, sorry the potato had dairy in it, the hot chips are cooked with crumbed products...) and if going to a community event or friend's place, take most of my own food. I was very deeply embarrassed about being thought of as a fussy eater and I was, underneath all the trying to make the best of things, both grieving and very angry at being excluded from the increasingly food orientated culture around me.

After about six months, I was able to recognize my grief for what it was, and to accept that the restricted diet was better than being sick. I still cry sometimes despite it seeming silly in the whole scheme of things. Restaurants have got better, supermarkets have got better and may be I'm a better cook.

Now I think that experience in some way prepared me for my breast cancer journey.

So, Susan W, rage against the loss of physical fitness, and then enjoy moving your body in whatever way you can. Be kind to yourself. Being grateful has been shown to be life enhancing, but I'm sure yelling "Stuff this" occasionally must help too.

Seeing a physician/ endocrinologist, a dietician or exercise physiologist specializing in recovery from illness and nutrition may help to pick up something you've missed. As you know, it can be difficult to get enough protein in the right mix in a vegan diet and some vitamins and minerals can be difficult also, particularly Vitamin B12. There is no vegan source of B12, but foods fortified with Vit B12 sourced from micro-organisms, rather than larger animals are available. I have read that some people simply never feel well on a long term vegan diet because of the difficulties of maintaining certain nutrients. :( This would be a good reason to check with a professional if your supplements and diet cover what you need to put on muscle mass, which might make weight loss easier.

Wishing you the best,

Aussie girl

[karen z]

Susan W
You speak for many of us !