Back to normal after mx?

ailenroc

I am a year post bilat mx + recon and I think I recovered well with the help of PT and disciplined regular exercise. I am overall fit and functional ... and everyone assures me that I "look perfectly normal."

BUT ... there is no way that I feel that I am really back to 'normal'.

My surgeon says that 'everyone' eventually returns to normal ... give it a year. Well, it's been a year. Is that just surgeon talk because they don't really assess their patients full functioning beyond the surgery. It's not that my surgeon ever assessed my range of motion or strength. 

Or do I have an unusual situation ... and all of you are really back to fully normal after a year?

Here are my ongoing issues a year post mx: PLEASE ADD YOUR DESCRIPTIONS OF YOUR "NEW NORMAL" SO WE ALL GET A BETTER UNDERSTANDING OF WHAT IS REALLY NORMAL AFTER MX.

Here goes my list:

I still have limited range of motion in my upper body & arms; full stretches and torso rotations require a conscious effort and regular practice

I tend to hunch over on my desk, way more than I used to: it is as if the tightness of the chest pulls me into a curl. I have learned to pay attention and counteract this with various stretches, but it requires a constant effort

difficulty opening and closing sliding doors and windows;

I struggle with opening the heavy doors on business buildings (and can now empathize with old people's complaints about all these heavy doors)

I can't hold my large frying pan with one hand anymore.

I have major difficulty opening jars or using the manual citrus press.

I can't windsurf anymore; can't hold the heavy sail with my arms and upper body; I can't even lift it out of the water

When swimming, I feel my ‘breasts' in a weird way and they crumple up with every stroke; one reason to stay under water

push ups: are you kidding

certain yoga poses that require the pecs: no

And, of course, my breasts crumple up each time I lift or push or pull something or when I lean on my elbows ... so, I'm trying not to crumple with a low cut top, which means I need to stand almost motionless because the most harmless movements make my boobs crumple: washing my hands or the lettuce, brushing my teeth, squeezing a lemon ...

I am wondering: how is all of this for autologous tissue recon girls? Are you better off?

Dx 5/30/2008, IDC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2-

Gitane

I am 3+ years out from bilat mx + recon and chemo.  I'm taking Femara as well.  

I still do not have my strength and endurance back.  Frankly, I don't think I ever will.  I think the chemo and Femara are responsible in my case, rather than the implants.  My breasts crumple up, too.  I don't know how any surgeon can say we all return to normal.

mom_of_2

I had bi-lat mx last December and finished reconstruction in June of this year. You sound just like me...limited mobility, can't open doors, can't reach behind the drivers seat, any twisting motion is a no no ie. jars, you can forget push ups and I could go on on and on. Seems like everyday I find something else I either can't do or movement hurts. Overall I can't complain. I had a good surgical outcome but also have ripples when I bend over. PS said its due to my thin skin and it won't go away. 

Since I am only 8 months out maybe things will change but I am not counting on it. Just wanted you to know there is some else out there going through the same thing!

All the best

Kris 

ailenroc

Kris, thanks for expanding the list of "not really back to normal" examples. I forgot about the jars, reaching behind the drivers seat, push ups or any yoga pose that needs biceps ... and yes, I do keep finding new things that I can't do ... I don't really know myself the full range.

Gitane, you said it well: I don't know how any surgeon can say we all return to normal.

I'd love to know how common these long term limitations are that are never discussed by any doctor or anything I have read in the context of otherwise good results and no major complications. 

Ladies please keep replying: let's do a survey here.

gymgirl

I'm 2 years post BLM with silicone implants. I was fit & healthy before surgery and mostly feel like I am again, but I will never achieve that same level of fitness & strength I had before. Part of it is just getting used to the dead weight on the chest and not being so self conscious when they crumple or distort with movement. I think I notice it more than anyone else does. I am doing yoga again and can do a plank but not a full pushup to the floor. For upper body, I mostly do free weights, not over 10 lbs each, with lots of reps. I do lots of upper body stretching, especially neck, shoulders, pecs. At 58 years old I just want to maintain my strength, flexibility & endurance and not be in pain.

What I can't do now? I now have fat that spills out over my sports bra that I never had before! Where did this come from?? I think it's from the Arimidex that takes my remaining estrogen. I weigh the same as I always have but don't feel the same. So I'm not dressing the same, especially in the summer. I can reach back in a car now but don't have as much strength to pick up something from the back seat. It takes 2 hands to hold something heavy and I no longer put things away on the top shelf over my head. I find myself cushioning my body with my arns if I sleep on my stomach. It feels weird because I never did that before. My body not only feels different, but unconsciously it acts different too. Do you suppose someday we will feel used to the "new normal" of our bodies? Maybe that's what the doctors mean.

ailenroc

gymgirl: Thank you for the thoughtful post. You added more of the same experiences I have too. That is a good reminder of how adaptive we are - for better or worse that is. I have unconsciously adjusted to so many new limitations that I can't even consciously recall them right off and a reminder from the ladies here makes me realize I have these limitations too -- I just have so well adjusted that I forget ... although I never feel quite normal.

Researchers would now argue (I know because I am one by training) that we are confounding the cancer experience with the passage of the time and the normal aging process. That is, we might anyway not have been able to do all these things because we are getting older, not because of the cancer treatment aftereffects. But quite frankly I think that any good study with a good comparison group of women who did not have that experience would not see the same limitations to the same extent in the non bc women.

 Please all keep responding. I really think that the surgeons don't know about the longterm effects of the treatment and perhaps many of us are suffering thinking needlessly "it is just me".

ailenroc

Girls,

what is the "new normal" for you after mx with recon? Anything we've missed above?

Anonymous

I feel very blessed in that I am one year out from bilateral mastectomy and feel almost back to normal in terms of physical abilities.  I have saline implants and did not require chemo or radiation since my cancer was two spots of DCIS. (I'm sure the factor of no chemo or radiation was a dramatic contributor to how well I am doing now.)   I am 47 years old, and was fit prior to my surgery (i.e. lifting heavy weights, doing lots of cardio)

I am thankful to be able to say that I am back to lifting pretty much what I was prior to mastectomy, except I do avoid much weight lifting that is specific to the chest.  I lift heavy on my back and arms.  My grip strength is very close to normal. I am back to being able to do sets of push ups and pull-ups without any adverse effects.  

Currently I am training for a 1/2 marathon.

I feel that my level of fitness prior to diagnosis certainly did help in terms of recovery, and I have been very diligent about adding back exercise as soon as it was reasonable.  

I feel very fortunate to not experience much in terms of limitations.  I thank the Lord for that.

I rely on Him daily for help in restoring, maintaining, and continuing to grow in strength. 

God bless all of you wonderful ladies,

Sue 

ailenroc

Eagles: Wow. I am glad to know that there is hope for getting close to normal. I too was fit before and got fit again after ... back to the gym ... lifting, just not as much as before ... but nonetheless I don't think that I am back to normal. I don't mean to whine ... just to get a gauge of what is normal for us post mx'ers and to get a better sense of how off the surgeons are when they assert that 'everyone' will get back to normal ...

sunfishlee

 I really appreciate all these posts, they are so helpful to me. I had a PBM in January and exchange to silicone implants in May. I am grateful for my results which look pretty amazing. But I will never be the same. I too have trouble with heavy items, can't open jars, can't do pushups, etc. But the real surprise was how the pec muscles scrunch up and make my breasts look strange all the time. If I move my arms together, they scrunch up, if I lean on my arms they do the same. About the only time they look normal is if I have my arms relaxed at my side. They also burn quit a bit especially later in the day when I am tired. I understand this is due to damage to the intercostobrachial nerve. It's not terrible, but its there. But in the end, I would do it all again, for the relief of knowing my risk has gone from 50% to 2%.

All the best,

Lee 

swimangel72

My "new normal" is interesting. My initial unilateral mx with immediate free-tram was last March 2008. I can no longer swim non-stop laps in the pool for 30 minutes because I'm afraid of aggravating the LE in my right arm. My free-tram foob is still too heavy and it pulls on my chest wall muscles - hopefully during Stage 3 surgery this coming November it'll feel better. My abdomen is very much weaker after the free-tram and MRSA and hernia/gall bladder surgery this past July. Situps - forget it. I can't even roll-over in bed comfortably. I need to use my arms and legs to move my torso onto my side (and this only recently - for a long while I could only sleep on my back.) I can't open heavy doors either........I can't walk the 3 miles as easily as before, but I hope to build back up gradually, if only my right hip would cooperate. I always had a touch of arthritis there - but since I've been on Arimidex for over a year, it has gotten much worse. My right hip and leg will just go out on me for no reason at all - it makes moving from a standing to sitting position nearly impossible without someone helping me. I truly feel like I'm an 85 year old woman (my  mom's age) and hope that over time things will improve.

Thanks for starting this thread Ailenroc - it's good to know I'm not alone and that I'm not a hypocondriac!

lisa-e

It is almost a year since my bilateral mastectomy.  I didn't have reconstruction, so my expereince is somewhat different than all of yours.  But I am still not back to 'normal.'  I can do most things I did pre mast strength wise, I have regained 95 to 97% of my range of motion (my estimate) and my endurance is good.  But my chest always feel tight, my shoulders feel tweaked and I have mild le.  Normal?  Not even close.

ailenroc, I know exactly what you mean about your chest pulling you into a curl.  So frustrating....

ailenroc

lisa: how quickly did you recover without recon after mx?

lisa-e

ailenroc, I went back to work (full time desk job) after three weeks. Post surgery I used pain pills for a week. I had some physical therapy after six weeks to help with range of motion issues. I was able to return to climbing and hiking after two months. Still working on regaining the last bit of range of motion.

libby

I am now 5 months out from bilateral mastectomy - still have TEs in place.  I also was in good shape when diagnosed - running, light weight training, other cardio.  Returning to my previous level of activity was interrupted  the first 4 months because of seromas and then TE placement, but I did visit a PT to increase my range of motion and she worked on loosening scar tissue.  By the time I finished she felt my range of motion was functional.  However, I still get "stretching" sensations when doing the breast stroke and was surprised just a couple of weeks ago that my range of motion prevented me from doing side bends as part of an exercise class. I'm working on more stretching and strengthening exercises now.  The whole idea of feeling hunched forward is "normal" I guess.  According to my surgeon, the body keeps trying to shrink the surface of tissue that has been damaged - don't know when it finally gives up!

I think my strength for routine tasks is fine now, but I haven't done sports that depend on upper body strength.  I haven't tried to kayak since surgery.  My TEs are on top of my pec muscle, so at least at this point they don't crumple - maybe will change when the implants are in.  Can't sleep on my stomach at this point either - not that I was a stomach sleeper, but it's nice to be able to change it up during the night.   

Jorf

I'm 53, 3 years out L mast with saline implant and I think I'm in better shape now than I was prior. I made a committment to myself to do some exercise every day throughout chemo and I've stuck with it since. I was in PT as soon as my surgeon said ok (the surgeon herself sent me home from my first surg - lump and ax dis - with the mandate that I be able to stretch my arm straight up over my head at my one week checkup). PT was more important to my healing than I can say. I had the added motivation of having my preliminary black belt test in Tae Kwon Do scheduled for one month after chemo and I have that to thank for keeping me going (and then on to my BB test a year later and my 2nd degree BB test next week!) I'm more conscious of posture because I know that my chest musculature is now built to pull my shoulder forward and down (PT told me that pec minor now tries to take the strength place of the pec major - that is over the implant and what causes that silly scrunch whenever it's engaged - yuck - and the minor pulls the shoulder into a slump). I still go to the gym, do TKD, walk or row most days. I do just as many push-ups if not more. My left arm is absolutely not as strong as the right (of course, my right - non-surg side - is now injured since taking on a new sport - rowing) and I don't think it ever will be. But I'm not sure it ever was since I'm right handed.

I'm pretty convinced that, with the right assistance - PT, massage, trainer - most of us can get back most of our strength and we have the capacity to get stronger. Don't Give Up! Get help if you feel like you need it. Find out who the best PT is in your area and your insurance will cover it. 

ailenroc

Jorf: thank you very much for the detailed post. Interesting the explanation of what makes the pecs crumple; no surgeon or PT person has explained it like that to me yet but it makes good sense. I do wish we would get all around better explanations and therapy for our post surgical condition.

Ladies do keep adding your experiences ... it really helps to know the spectrum of limitations and successes after mx so we don't feel "it's just me"

hotandcold

Dear Ladies,

Go to Physical Therapy and then go some more !  I had a bilateral mastectomy in January and I'm still in PT.  I had lymph nodes removed from the left side.  I did not have replacements. I'm  54.  The tightness in my chest is just now starting to go away some of the time.  I have gained a lot of strength back in my right arm and I'm still working on my left.   My original PT therapist got me to "occupational range of motion" and then told me I didn't need any more.  So, I found another in the same practice and said I still needed  more help to get rid of the tightness. The "New Therapist" is still working with me, but needs a list of things I can't do on a monthly basis.I see her once a week and work out 3x a week.  These are some of the things I can do now.  I can now hold the frying pan with one arm.  I can reach up to the top shelf in my kitchen. I can turn sideways and reach for the toilet paper.  I can reach into the back seat of the car  from the front seat.  I can reach up, from my chair, and turn off my  floor lamp.  Will I ever be back to normal.  Heck no.  I  have mild LE in my left arm.  It's a constant battle. It still pulls on both sides when I reach for some things, but with PT the pulling and tightness are getting better and better.   I keep thinking that one day I'll get better, but now I'm realizing what my "New Normal" will probably be.  I hate that phrase. I want my old life back.

Corrine  

ailenroc

Corrine: thank you for your contribution. I find it really good to know what others limitations or successes are. The limitations are good to know so we know that we are not the aberrations or losers in the post bc treatment experience; and the successes are good to know so we know that they are possible and we have something to strive for. I totally agree with the PT suggestion; I am by now on my 6th set of PT and I keep making advances. I'll keep trying to reach into the backseat of the car and to hold my big frying pan ... thank you for the inspiration.

hotandcold

Hello again ladies and specifically ailenroc:

     I just had to post again 2 and 1/2 weeks since last time and tell you all how much my Physical Therapy  has helped.  The pulling on my pec major and minor has definetly improved. It's that hunched over feeeling or too tight sports bra feeling.  My Therapist  has different ways to stretch them (the pecs) and I don't have implants so that probably helps. There are also the intercostals that she works on too. She does many different movements with my arm and body.   

     My PT  also says my condition is similar to a rotator cuff injury (who would of guessed ?) and  she pushes and pulls on me like I'm a  baseball pitcher. It has definitely helped!  I love it.  I also have exercises with weights to help my strength. It's a lot of hard work.  All the stretches that I do only seem  to maintain my ROM (range of motion), and my flexibility. Only after a session of her stretching and pushing on me do I seem to improve. I want to give  "Hope"  to all of you like my Physical Therapist has given hope to me. 

Hope and Best Wishes for improvement,

Corrine    

krissy

I had a left mast. almost 2 yrs. ago with no implant.  Before, I was in decent shape with a lot of walking and biking--also play a string instrument for a living so use both arms quite a bit.  Added  yoga a month and a half after surgery and intend to continue that indefinitely--love it!  My left arm, shoulder, and chest feel like they will never be the same as they were pre-surgery.  Stiffness, numbness and pain/pulling/tightness are all factors, but I feel good with what I'm able to accomplish despite it all.  I ordered a DVD of exercise and weights to help bc patients with le and strength so we'll see how that goes when I receive it.

ailenroc

Krissy: thank you for the post. It is great to see how others fare after mx. Good luck with the new DVD and yoga. I'll pick that up again too. Still rehabbing after a revision.

mrsloghouse

I had unilat mx and implant based lat dorsi recons in 2005. I then had dxt to chest and axilla,chemo , a lot of growth colony stimulating factor as well as taxol which really killed my bones poor things and hopefully all my cancer cells !

Have I got back to normal ? NO.... but we would've all changed anyway no one stays perfect (except sharon stone with the help of her fab surgeon) It all changes . After a year it all drops and relaxes a bit. With more time the compensatory methods your body adopts start to flare up...never a dull moment on the orthapoaedic front !

I have a good range of movement in my left arm but if I exercise with a trainer or do any kind of arm exercise I get horrible nerve pain in my left hand and I give pecs of steel a new definition !

I ache and have all sorts of compensatory orthopaedic issues due to losing that little old lat and pec maj ! I am an MD and have researched all this and tried most things.I must say my view of the preop advice my fellow Doctors give has changed !Barely mentioned it but then they were trying to save my life bless them not get me ready for the red carpet ! Sometimes I feel like I am 80 ...I am now 42 and 20llbs heavier than when I started !

I ski for 2 months a year. Jogging is out of the question for me but aerobics and dance are fine in moderation.Swimming and cycling ...varied exercise puts less strain on the joints. Aerobically I am not too bad but nowhere near as fit as I was before

What works ....

myofascial release physiotherapy(PT) regular often and lifelong. (check out the work of Willem Fourie a South African physio who specialises in post onco surgery rehab) .good massage can help. take a friend along if you have money issues and get the PT to teach them the moves.

Studio based pilates with a clinical rehab specialist who knows what they are doing.(stott pilates have a breast cancer rehab dvd series to purchase)

Breast stroke swimming and side stroke and back stroke in fact swim and swim and swim. 

mental state is all important.

A good hypnotherapist can also help with chronic pain. A good counsellor can revolutionise the way you see the disease.

When you look in the mirror do not look at anything in isolation .Look at yourself as a whole person not a pile of good and bad bits. Don't hate your scars/breasts learn to see them as marks of bravery and strength. Dont look at the models in magazines ...they are not real people !  A person is so much more than the body they inhabit ... Many of the friends and partners who tell you that you are beautiful are telling you the truth ....don't give in to negative thoughts pumped in by the media etc no one is perfect ..! Hop into bed with those loving husbands who tell you are great and .....corny corny feel the love ...you can get it going again ! Real women get breast cancer , and like all women they get fat , old and achy too but ...we all like people for who they are .Do what sport you can for health,eat for health ,exercise to enjoy yourself, live a  life now, eat your five every day and do something that makes you happy and dont wait to lose the pounds ! Make your daughters and your grandaughters exercise for fun take them walking or cycling, teach them all to eat well and be real women in real bodies.  Being happy is very important to a good immune system and winning the war ! Pace yourself , enjoy each day and move on  !   

 Ps :No jars, No push ups, use the ladder to climb out of the pool,if  I fall sking can only get up on one side... very undignified . By the way surgeons don't want to know any of this . operating on people with cancer all day is enough without thinking about the long term physical repercussions ! Never make the mistake of thinking more surgery is the answer !