The 80/20% left /right divide is quite astonishing,I had no idea about that. Fortunately (!) my mx was on my right.
Mum2two,yes I am a radiographer and work in a neuro dept with MRI ,CT and a angio suite (similar to a cath lab.)
I would think you should ask how many nodes were removed so you can assess your own risk,my understanding is that ANC is axillary node clearance so you may have had most of them taken away.I had ANS which is axillary node sampling where they only take a few including the sentinel node.
Good luck with return to work when you are better,but don’t rush back.I am hoping to go back phased return in mid Dec.
Take care,
Dot
x
I had 14 nodes removed along with my mastectomy, follwed by chemo and rads. I’m 2 years post aggressive treatment (still taking tamoxifen) and have had no problems with lymphodeoma. I went back to the gym about 6 weeks after surgery, swim and continue to ride my 535 cc motorbike. I’m nearly 50 and a size 8. I can’t lift the weights I used to as I’ve lost some strength/grip in my right arm. I keep my arm moistursised and massage it to help with the movement of lymph fluid (as recommended by my BC nurse). I keep my arm clean and treat any cuts/scratches quickly. (again recommended)Apart from that I get on with my life and don’t obsess abuot “what ifs”.
G
Very pleased to hear things are going so well for you Geraldine. Long may they continue to do so. And glad to hear that you’re not letting the fear of lymphoedema run or ruin your life, which is very important, too.
I think the point we’re chewing over here is the significance of the few known risk factors and prevention strategies, but also we’re acknowledging what a lottery lymphoedema can be.
Many people develop it despite being thought of as ‘low risk’ and vice versa.
Hi all,
Just been reading all your comments with great interest.
I had right sided MX with removal of 12 nodes=sentinel node and rx. All was fine- went to gym, swimming etc. ,No probs at all… until I had recon (with expanders)and prophalactic mx to other side. Unfortunately developed infection around expander implant and shortly after that developed swelling to torso + heaviness to right arm. Was dx with trunk lymphodema which the lymphoma nurse said was almost certainly as a result of the recon surgery and post op infection (a cautionary warning to those considering recon- this was certainly not mentioned to me as a possibility).
Unfortunately my right arm is my dominent one and I certainly notice it aches after doing activities (writing, housework etc.) Am now considering whether or not to retire on ill health grounds as having lived with this for past 2 yrs I do not want this to worsen (i wear a sleeve as a precaution when doing activities ) and I do have to do some lifting, moving stuff as well as lots of writing etc. I think I can honestly say it is " the final straw"!!!
Love to all XXXXX
Yes, it’s truly adding insult to injury, isn’t it?
My first lymphoedema developed a few months after a TRAM flap recon…a connection? I think so, but it’s so difficult to prove a link with so many other factors to take into consideration.
But I agree that it should be highlighted as a possibleconsequence/side effect. I think I would have thought twice about a recon if I’d known.
Hope you don’t have to take early retirement. Any chance of reduced hours or a more ergonomic working environment?
daer Bahons,
I would just like to say that I have read many of your threads. these have been extremely informative and it is very clear you have obviously researched this subject thoroughly. I , for one, would like to thank you for this and have learned many things from your entries. I truly admire you in coping with this condition in both arms too - I cannot imagine what that must be like.
Thank you, thank you, may you carry on with your imformation and I look forward to hearing from you again!!
Best wishes, Anne XXX
Thank you…you’re very kind…I don’t know what to say! I sometimes think I sound like a sour old bat when I look at some of my rants/posts, but I do get cross and upset when people who are affected by this rotten condition don’t get the treatment and support they need and deserve to give them the possible best quality of life, which can be very good indeed with the right help. Which is why I try to post as much info’ as I can.
I seldom mention my OH here, but I have to say that his help and support has been a major factor in managing my big L, particularly when both arms became affected. From quietly relieving me of heavy items so stealthily that no-one notices, to being prepared to commit without hesitation chunks of our savings to what were then fairly ‘avant garde’ treatments abroad, he has been an absolute star.
I hope you guys all had the Xmas you were hoping for and that 2009 is a good year for us all. And lymphoedema research, too.
I have recently finished all treatement (apart from 5 years Arimidex) having had chemo, WLE, full node clearance and 3 weeks of rads.
I am planning on going to a health spa (treat) (only a day!!) before going back to work but it seems that I may not be able to have a full body massage because of treatement etc. Apparently even a back massage may not be poss unless I sign a disclaimer, does that sound right? What damage could a back massage do? They also have a light steam room, mud temple thingy and an outdoor hot tub. I was so looking foreward to this but knowing what some of you suffer with lymphodema it makes me think twice. I also believe in getting on with my life but precautions will always be sensible and hindsight is TOO LATE. Any advice would be much appreciated. I would also like to join a gym so am wondering if to buy a sleeve to wear for support?
If you would like to give the helpline a ring and have a chat with one of the nurses here they should be able to help you with this. Lines open Mon to Fri 9am - 5pm Sat 9am - 2pm, calls are free, 0808 800 6000.
I think a prophylactic sleeve is a good idea, providing it fits properly. Ideally your lymphoedema clinic should provide you with one, but the strategy is usually reactive (ie they wait until you have it before they give you one - yes, I know, horse, stable door and bolted…) rather than pro-active (let’s REALLY try to stop a problem ever arising).
A private MLD therapist (mlduk.org.uk) will enable you to find your closest practitioner) could be able to help you out here. (She could also give you some MLD - it’s not just for people with lymphoedema - which might substitute for that back massage at the health spa - and which would be a lovely boost for your lymphatics). You’d have to pay tho’, both to see her and for the sleeve itself.
(How brisk is the proposed back massage? I think I would say to be v cautious with this one).
Or you could try the ‘Activa’ website as mentioned by Nonny earlier on this thread.
One thing you might be able to use at the gym/spa is an ‘infrared sauna’, if they have one. I understand that some models can be turned down to warm (and not hot settings), while still being soothing.
Don’t forget to take some baseline measurements of both your arms…just so that if your arm starts to not feel right, you have some data at the ready…
I’ve been to the spa twice this year already. It’s a real boost. I don’t know where you’re going but usually there are different heat rooms which are different temperatures. I avoid the really hot ones but the temperate ones are really relaxing especially if they are aromotherapy. I haven’t had a problem. Had 9 nodes removed September 2007. Instead of a massage I had a facial which is just as good to be honest in fact I liked it better because you face is really moisturised and feels lovely. Enjoy your day at the spa, you deserve it. Just work round your probs.
I had lumpectomy, SNB with8 nodes out in total, chemo and rads. I did something rwally stupid just after i finished rads and that left me with 2 frozen shoulders for a year!
After my rads i remember my onc measuring my arms - he said the right arm (cancer side)would always be abit bigger because i am right handed. the only other thing i remember him saying is i cant have a sauna - you cant have anything hot on your arm and when i swim i can only swim afew gentle lengths arggggggggggggggggggggggggggggggggggggggggggggggggggg
he said any massage was good and just to get on with it apart from remember not to have injections into that arm, but could have blood taken out if i had to but as last resort.
I have been naughty and been sun burnt on that arm, i swim like a crazy woman lots of very fast lengths (just cant help myself) have blood taken out that arm for all my cancer marker tests (cant find any veins though in the chemo arm)and have been lucky up to now. I just forget most of the time more bothered about my blood bald head) and my hubby drives me mad alot of the time whatever i am doing he says ‘whatch your arm’ bless.lol
I have also had a sauna and steam room but only for a couple of mins.
I hope i havent tempted fate now
I have lots of celtic blood in me so i will try to behave abit more after reading all this.
Good on your onc for measuring your arms!!! I’ve never heard of an onc doing that before.
I’m a keen swimmer, too, Pineapple. The water is the one place I feel free of the lymphoedema and I’ll swim as much as I can. It’s very good for all our arms, so you could well have built up many lymphoedema ‘brownie’ points by doing this! At the top of my game I can do a quarter mile, but at a very sedate breast stroke.
I have blood taken from my feet. I’ve found French nurses are absolute whizzes at it. They just whip out a ‘child size’ cannula and we’re away.
Thankyou Bahons for the info you made available to me.
I did too much gardening yesterday and now have a very painful back at base of my spine and can hardly walk, can’t stand up straight. I mowed, moved large plant pots to clean around and weeded. I won’t be making that mistake again. I think I just got carried away with being able to do things and it was a lovely day to be outside. It was my day of feeling like I was before BC but seems I have to pay the price! Yes, I know I’ve been daft.
Today i am making up for it and doing nothing, actually I can’t do much at all!! AT least I can sit in the garden and not keep thinking what needs doing…till the grass grows again… if only my hair would grow as fast!
Thanks everyone for your replies re spa etc. I hope to go in May and take my friend who has helped me so much over the last year for her birthday.
