Hi,
I’m new to the forum, was diagnosed on 30th april with BC and underwent lumpectomy and sentinel node biopsy a week ago on fri 15th may. Prior to all this was a very active 35yr old (25 still in my head!)and wondered if there’s anyone out there who continues to do more extreme sports etc despite drs and nurses stressing risks re lymphoedaema (cant spell it!) - seems all doom and gloom - jigsaws and knitting but was hopin for a more positive outlook for (hopefully) the next 30-40yrs. Also wondered if 1 wk after surgery is too soon to start (gentle) cycling - been doing a few miles on exercise bike for the last few days - and its just not the same!!!
Would love to hear from like-minded active ladies of all ages - for tips on this subject!
hey pixie,
whatever you do, don’t start acting all old and mature now. Try to maintain your fitness and do whatever you can do when the time takes you. So soon after your op I’d keep to gentle exercise, but as soon as you feel strong enough, do whatever takes your fancy. I also think I’m 25 but sometimes act like a teenager. I’ve been to Go Ape, cycle regularly, completed 18 mile hikes in the Lakes, walked the hounds and still dance a number of times a week…I just listen to my body and rest when I need to. If you stop then it will take a while to get back into it. You need something to occupy your mind and if yours is exercise then don’t stop.
Someone else may say different, but that’s just my story
al
Well I’ve never let bc get in my way! I’ve always been pretty fit and active. I had lumpectomy and aux clearance and I drove the day after leaving hospital. I was back helping to wire houses in notime. I worked all through chemo and thought nothing of lifting rolls of cable etc. I would have stopped if I had shown any signs of lymphoedema, but I didn’t. I’m still fetching and carrying five plus yrs down the line and I may have muscles like a navie…but still no lymphoedema! I’m not making light of it - just saying that it’s not inevitable…Good luck!
Hi Pixie
Twenty years older than you, had a mastectomy and sample of lymph nodes taken, rads and 3 months later was on the top of The Old Man of Conniston. On Monday I am backpacking along the Thames Path from source to Oxford, at which point I will have walked the whole of the river, I had to put this on hold when I was dx.
So I would take care but go with your body, for people who are active continuing is part of the recovery.
All the best
Mx
Hi Pixie
Sorry you had to join the club! Loads of support and stuff on here, it’s great!
I’m 50, had my WLE early April and am now nearly half way through rads.
I think the important thing is to listen to your body, certainly no need to give stuff up, but not overdo things?
I usually ride, most days, and without the horses, I think I would go mad! Definately important from both mental and physical fitness aspect for me, and I think that goes for most people who exercise regularly.
Apart from about a week post op, I’ve still ridden most days. Have to say, it’s got a bit uncomforatble these last couple of days, as the rads seem to making my boob get bigger by the day! Will probably give it a miss (or certainly no trotting - bounces about a bit much!)
if I get more uncomfortable towards the end of the treatment, but will see.
On the other hand, some days, the tiredness has hit hard, and I find it best to accept it, whereas pre Dx, I would have probably pushed myself. Just listen to your body, I suppose.
Hope it goes OK, for you and everyone else whose posted,
Lizzie XX
thanks guys - your comments are very encouraging. Whenever i mention getting back into mountain biking and kickboxing to nurses they look at me like i’m crazy! Bizarrely I think i’ve been finding it harder to accept the news that i wouldnt be able to continue my hobbies due to the risk to my arm than the actual cancer diagnosis at this stage! What about sit-ups and press-ups - does anyone still do these? Again when i mentioned this to the nurse i thought i had grown another head she was looking at me that strangely!
Ta
X
Hi Pixie,
I’m 42 and was diagnosed in 2004. I had mastectomy and axillary node clearance and I developed Lymphoedema in 2005. It is quite severe and affects my r arm and chest wall.
Before breast cancer I was quite active, I used to run fairly reg, climb (very badly, always seconding) and mountain bike.
I gave up the climbing because I put on weight and lost my upper body strength and I was never mega keen but I have carried on mt biking because I really enjoy it and psychologically I feel much better for it. I don’t think it’s ideal for my lymphoedema because my arms are quite rigid and gripping - but I have made a decision to carry on with it.
My own gut feeling is that if you are prone to lymphoedema you will get it - maybe triggered by something like a flight/over-exertion/infection etc - but you can’t avoid everything all the time. If you are not prone to it then you may never get it - so it would be a shame to miss out on activities for no reason.
So my completely unscientific advice would be do what you enjoy - but take precautions. eg. If you’re going through terrain where there are bushes etc at arm height always wear a long sleeve top no matter how hot it is and make sure you don’t get sunburnt at all. I think any pinkness/redness could precipitate or worsen swelling. So don’t take unnecessary risks but do as much as you can!
Rowena x
Hi Guys
Well I another fitness fantatic on this site I was diagosed aged 38 and had Mx axillary clearance & DIEP reconstruction. I’m a runner and a climber and was up the clmbing wall 9 weeks after. Have just come back from an extreme ice climbing trip on a glacier in France.I know my medical team have labelled me ‘nutter’ but I see it as my way of carrying on ‘normal’ life if ever there can be one again. I haven’t had a problem with lymphodema so far but got fitted with a sleeve as a precaution. I agree with the advice Rowena gives. I think you should go for it and if it’s something you enjoy then why should you give it up? BC makes us give up so much already in terms of lifestyle impact I’m all for carrying on with things I enjoy as long as I am able to.
Good Luck
E xx
Hi
Agree so much with Rowena and E. Sitting on the sofa knitting for fear of lymphoedema when you want to do something completely different is no way to live. And the majority don’t get it.
E’s prophylactic sleeve would be a good idea, if you can get one. Unfortunately many bcns and lymphoedema clinics won’t do this. However, if you put ‘Activa’ in the forums search box you’ll find a link which contains details on how to order your own through a chemist.
Furhermore exercise (particularly swimming, but it’s probably too soon for you to start this and many other activities, too, I imagine) is good for lymph flow, so it really isn’t a good idea to give it up completely.
I think it’s more a case of ‘suck it and see’. When you are more fully recovered, start off really really gently and slowly and stop immediately if you experience any discomfort whatsoever in your arm.
If you (or anyone else) would like more general info about arm lymphoedema, feel free to drop me a pm (can’t post most links, etc on here).
FYI, I have lymphoedema in both arms and can still do stuff (altho’ I’ve had to replace certain activities with others and learn when to stop)!
Bye for now
X
S
Hi
I’ve recently joined this ‘club’ and as a paediatric (childrens) nurse I’m probably luckier than most in that I have some idea of what I’ll have to go through, the systeme and what kind of things to ask.
Have realised a lot of adult nurses think those of us who like leading acitve lives (or to be more precise LIVING) are nuts.
However have learned from kids that life is for living and if you take sensible precautions and listen to your body you can do what you like.
Can never tell who will or won’t get side effects, medicine and humans dont come with definates only maybe’s and possibles.
The only thing we know for certain is NOW
Have been told can carry on with my horse riding but please put off learning to kayak till chemo finished (drinking Themes water while immunesuppressed = not a good idea LOL).
Also know how you feel was more upset over realising I’d never be much good as a solo sky diver than over this diagnosis, after all this is a disease which can be treated, know will have some really rough times before get through but have no intention of letting it ruin my life and I dont think you should either.
All the best on this rough ride but have fun on the way to.
its great to hear from people leading ‘normal’ lives doing ‘normal’ activities - definitely NOT signing up to join the local knitting circle just yet!. Went for a walk round a the lake near me this bank holiday and the amount of people that bumped into my ‘bad’ arm was unreal - so figured maybe the cycling would be safer!! Been looking at buying some body armour for MTB - mite look a bit of a pratt at 36 in a full suit but figure if i get a full-face helmet too nobody will know i’m not a 12 yr old kid as i’m only 4’11!! I’m still experiencing some pain under arm and beneath my shoulder blade for some reason (is this normal?) but its only been just over a week since surgery so i suppose its still ok to take it easy for a few more days, then hopefully take the bike out next week for a couple of short easy test runs.
hi pixie,
i had mastectomy and sentinel node biopsy (5 removed) in november 2008 followed by radiotherapy. i went skiing in march 09 and am now back to normal activities. i’m 35 too.
(about 3 days after the op i developed “cording” and i thought i would never be able to straighten my arm again but a few weeks later it just resolved. i remember getting lots of reassurance on here that it gets better and just wanted you to know that you can resume normal activities and feel like “you” again!
try and do the excercises they give you regularly. )
x
(i also do regular body pump class even though they said don’t do repetitive lifting. i wear a compression sleeve during the class. )
I did forty miles on my bike two sundays ago and 22.5 miles over the sussex downs on this sunday. I carry the bike up station stairs in my right arm rather than my left (had to go on the district line to charing x and there’s lots of stairs up and down, then had to go across a footbridge twice at battle station
I don’t think they know why or who will develop lymphoedema so they try ridiculous precautions, I never wear gardening gloves etc as you can’t live like they expect you to
I was diagnosed in Dec 2003 and finished treatment in April 2004 apart from tamoxifen
Mole
I can relate so much to this thread! Got back into doing some good caving trips about 6 weeks post mastectomy & SNB. Had the chemo before surgery, and stopped caving then because of the low immunity, but went walking every day. I felt so much better for having gone and done something that I enjoy.
I have been told that I can never go scuba diving again after rads. This is such a huge blow as I go every year on hol, and also in the UK. I seriously considered not having the treatment because of this, but the odds were not in my favour. Started rads yesterday 
I think that doing activities you enjoy is such a huge part of feeling good, and that is half the battle. My BC nurse advised to be aware of aching in the arm, which can be a warning sign to stop, so I am being quite careful. I found that exercising, particularly swimming was very helpful post op with the physical recovery too.
I think that a lot of the health care professionals that advise us all BC survivors just give the worst case scenario. i was dx in january 2007 and had WLE,full anxillary clearance and rads. I’m on nolvadex and 1 year following my op i ran the london marathon!! i had completed the marathon twice previously, but managed this time to complete it faster than before. I’m back at the gym and do sit ups and press ups.
i too got cording in my arm and thought it would never be right, but my arm is like normal now. although i do have some numbness underneath.
hopefully lymphodeama will pass me by… i certainly hope so, but i agree with the other ladies posting on here, as long as you are careful then you should live your life how you want to. after all we are still all here… thats a definate bonus as far as i’m concerned.
keep on running, walking, climbing, caving, biking, watching t.v, eating chocolate… whatever makes you happy
Hi
I was chatting to my BC nurse yesterday asking about things that may affect me whilest on chemo and rads as having looked at quite a few posts on this site was getting a litte anxous about things that matter to me ie active life style and libido.
She was telling me that the evidence so far seams to show that people who do excercise before, during and after even though it may be hard due the fatigue etc that is a side effect of the treatments appear to do much better and have an improved outcome.
She even sugested cycling to me as a good idea (shes never seen me try to ride a bicycle - just cant get it lol motorbike yes bicycle no).
Hope this helps know it cheered me up no end
g x
Hi All - forgive me for butting in…
Harpi - you poor thing - why can you you not go scuba diving after rads? What reason did they give you? I’ve only been a couple of times, but I loved it to bits! I’ve had rads too and was hoping to do more (scuba, not rads, that is) one day.
I think it’s so important to go for it in terms of activity. Giving up certain pursuits for fear of lymphoedema is no way to live, in my view. Better to take precautions (warming up/down x-tra slowly, prophylactic sleeve if you can get one, starting slowly and building up really, really gradually, stopping at the first, and any, sign of discomfort) and give it a whirl. I’ve got bilateral lymphoedema and sometimes I’m amazed at what I can still do and, as for things I haven’t tried yet I ain’t gonna die wondering!
X to all
S
Hi Bahons 2,
Apparantly, the rads can cause lung fibrosis (scarring) which can cause pockets of air to be trapped in the lungs, which can then burst on ascent. Note all the “cans” !
I only really found out by accident when I mentioned to the consultant about going on holiday. She also said that the fibrosis can be an immediate affect or take some months to appear.
I am hoping that I can get properly checked out to see whether or not I have a problem in a year or so, as it does seem that other people do dive after treatment.
i’ve just signed up for a research study with north manchester general hosptial looking at diet and exercise for breast cancer patients undergoing treatment. Is there any one else from the manchester/cheshire area that are taking part in this study its called B-AHEAD (breast activity and healthy eating after diagnosis?
Sounds like a step in the right direction…instead of the normal assumptions that the type of exercise us BC patients do are vaccuuming and ironing!