Hi all,
I had a mastectomy and ANS in July where they removed the sentinel node and 3 others (routine in my hospital)
I am now looking for advice about my risk of lymphoedema.
I have asked BCN,Physio and Occ health Dr but I just get vague replies!
Is it much lower than if I had a node clearance?
I have a physical job which involves moving patients,heavy equipment and wearing a lead apron for long periods of time.
Everyone just tells me to build it up gradually but thats about my strength not the risk of Lymphoedema.
Seeing my consultant this afternoon so wanted some pointers from the ladies on here.
I attend the same hospital as Westsidesue who has put in a complaint re lymphoedema advice!
Thanks,
Dot
x
Hi Dot
This may be of interest to you whilst you await replies, BCC has published a factsheet on reducing your risk:
breastcancercare.org.uk/docs/reducing_risk_of_lymphoedema_0.pdf
You are welcome to contact our specialist nurses regarding your specific query, please call our helpline on 0808 800 6000 or you can also email our specialist nurse team via the ‘Ask the Nurse’ service which you will find on the front page of the website.
Best wishes
Lucy
Thanks Lucy,
Its the bit about avoiding heavy lifting and pulling that concerns me.Also the avoid heavy shoulder bags would relate to wearing a lead apron for long periods.
Dot
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Hi Dot
As you have an appt this afternoon, I thought I’d try to reply asap.
My little lymphoedema bible puts the basic risk of lymphoedema as 20% after a full mastectomy and axillary clearance, falling to 10% if less breast tissue and fewer nodes are removed, neither of which matches your situation exactly.
I’ve read elsewhere that the risk is 6% without radiotherapy, rising to 36% after it.
I think the variation in these figures can depend on how long the follow-up period is (peak time for developing lymphoedema seems to be around 3and a half years later) and trying to estimate how much lymphoedema goes unreported by patients.
Other risk factors are radiotherapy, age (risk increases the older you are), being overweight and I have read that being diabetic can also increase the risk.
Taking into account the physical nature of your job, you might want to ask for a compression sleeve to wear as a preventative measure, though in some areas they seem reluctant to do this.
Hope this helps - good luck with your appt.
X
S
Thanks Bahons2
It seems then, that my risk is quite low,
I had no radiotherapy, I am 44 (is that quite young?),not diabetic but a bit overweight!
Not sure about wearing a compression sleeve at work as thats what I am trying to avoid by not getting lymphoedema,but I will keep it in mind.
It seems all the info I find concentrates on patients with a clearance.
Thanks for the info,I will see what my surgeon says this afternoon.
Will let you know!
Dot
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Hi Bahons & Dot,
Hope it’s O.K. jump in here with a query…
Bahons, thanks for those stats.
Just to be clear: is that rads stat. of 36% for treatment to the axilla (after node involvement) or for any amount of radiotherapy? Starting my rads tomorrow, yikes! (breast only, no boosters)
Dot,
Good luck with your appt. hope you get some answers.
P.S.
Someone has probably already thought of this, but what about a sticky for Lymphoedema resources in this category? I’m already a bit overwhelmed trying to do research for prevention….maybe something for the new site when it’s up & running?
Lomalinda
XXX
Hi Dot
Not having had radiotherapy is a big plus, I feel. And I suppose the other thing to bear in mind is that the majority of people who’ve had breast surgery don’t get it.
I have to say tho’ that if someone had offered me a sleeve to wear when I was shopping, flying, hoovering etc to try to stop me getting lymphoedema, I think I would have tried it (mind you, hindsight is a wonderful thing, isn’t it!), rather than be in the dreary situation I am in now where I am wearing sleeves practically all day, every day (and will be for the rest of my life, unless there is some big breakthrough in this area) simply to try to stop my lymphoedema getting worse.
Anyway, hope all goes well this afternoon, Dot - I’ll be interested to hear what your consultant has to say.
X
S
Risk is a difficult one. I have had treatment for my lymhoedema in Austria and gleaned lots of anecdotal information.
- There is a “Celtic gene” which predisposes oedema. My mother was Irish and often had swollen feet and legs.
- Lymphoedema is much more prevalent in the left arm. I assumed that breast cancer must occur more often in the left but, apparently it is because the lymph system is more efficient in the right.
- If you have fewer nodes, you are more likely to develop lymphoedema.
Apart from having it in my right arm, I have all these risk factors. I had mastectomy and clearance of only 14 nodes and radiation to the axilla as well as chemotherapy. It was no wonder I developed it only 2 or 3 months after finishing treatment. If I’d known then what I know now, I would have insisted on being measured and having a compression sleeve on stand by!
I have lymphoedema in right arm, had 19 nodes removed and radiation to axilla but no chemo. My lymphoedema developed 2/3 months after treatment too. I was found to have a DVT 6 weeks ago and suffering with swollen right leg and foot, swelling not reduced, I was starting to wonder if my body was prone to this. My Great Granda was Irish… could I have this gene? I already have BRCA2 may as well have another one!!!
Hi all
Kelley - this info from the (Vodder?) clinic in Austria is really interesting. (I am going to add it to my lymphoedema file - have they published anything, or is it, as you say, still just anecdotal?)
I have a lot of Scottish ancestry, so there could well be a ’ Celtic gene’ in there somewhere, I suppose.
It’s funny, I was just reading on the lymphoedema thread on the american sister site to this one that the right side of the body drains lymph better than the left.
X to all
S
Hi Lomalinda
Sorry, I’ve just scrolled back and missed answering your post.
I think the rads stat is that it can increase the risk by 6 times, but of course, that varies according to where it is targeted (and, as ever, the nature of an individual’s lymphatic system - we’re not issued with a standard one, more’s the pity!). I was told my axilla was not being irradiated, but I think it was just to shut me up as I was getting quite agitated about getting lymphoedema again (which I did unfortunately), already having it in my right arm.
Good idea about a ‘sticky’ for lymphoedema resources. Perhaps one of the bcc team can respond?
X
S
Well I asked my Breast Surgeon about my risk of Lymphoedema and he said “none”
I was a bit surprised since I knew my risk was lower but didn’t think it would be zero!
Does anyone know of anyone with Lymphoedema who has a only a few nodes (~4) removed?
I will take the basic precautions anyway re injections,infections,cuts,bites etc.
Dot
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Hi Dot
Unbelievable comment from your surgeon! Did he say how he knew this to be so? (Quote any research, for example?) I’d agree your risk was small, but non-existent? Do me a favour! How can it be? You’ve had a mastectomy, 4 nodes removed and associated trauma to the area, so there must be some.
I think I can see now why Westside Sue put in a complaint about lymphoedema advice from this hospital!
I’m not going to start off on one of my olympic rants here, but I’m just going to mention the american ‘sister’ site to this one (www.breastcancer.org). In the discussion forum there is a board called ‘Lymphoedema after surgery’ and there is a thread (not on the first page) entitled ‘Delayed onset lymphoedema’. Well worth a read - a research paper has been reproduced - it’s probably even worth printing it off and keeping it.
X to all for now!
S
Hi All
Just thought I’d jump in on this one. I had a bilateral mastectomy and full amillary clearance on the right side followed by radiotherapy on that side including the axilla. I asked my Breast Care Nurse about lymphoedema and she gave me the name ‘Activa Support’ which I looked up on the Internet. I had read advice about wearing a support sleeve when flying and when doing activities such as ironing, lifting and gardening. Having had Chemotherapy I was already at a higher risk of DVT so always wore travel socks as I do a lot of flying (internal as well as Europe, not long haul) I thought it would be a good idea to get fitted. I saw my GP and he agreed with me and referred me to our Lymphoedema Clinic where I was told they did not supply sleeves as a preventative measure, you have to wait until you have already developed lymphoedema! So I got measured (you can download the instructions of how to take measurements and the sizes and types of sleeves from Activa website) and purchased my own sleeve from Lloyds Chemist, £28.68 I think it was. I don’t want lymphoedema and will do all I can to prevent it.
Hope this will help some of you who are wondering what they can do for themselves.
Nonny
Bahons2
He did say something in support but I am not sure I can remember what exactly,my head turns to mince at consultations! Sorry!
I am sure he just said I had adequate lymph glands in place.
It would be nice to know statistics re sampling and full clearance but I don’t suppose they do research into it.
Will pop over and read the US site,
Dot
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Hi Dot and everyone else,
I’m sure I would have forgotten to ask him, too! It’s easy to think of questions at home, less easy to get them in during a consultation conversation.
Just trying to think of things logically, your risk of lymphoedema could only be zero if you had had no surgery at all, wouldn’t you say? On the other hand, you have many factors in your favour for a very low risk, which is really good news.
Nonny - yours was a brilliant post about the sleeve, really helpful (- I didn’t know you could do that. What a brilliant bcn you must have) - deserves to be repeated on a sticky and/or the ‘want more info’ thread. I’m amazed that your lymphoedema clinic wouldn’t give you a sleeve, despite the backing of your GP and bcn and all the hours you spend flying. (Makes you wonder if they’re afraid of running out of customers, or being made redundant, if too many people manage to stop themelves getting lymphoedema! :))
X
S
I will continue to take sensible precautions with my arm,as I do feel (like you) there must be some risk ,however small so if I can minimise that ,even better.
Lymphoedema is a truely dreadful condition and I can imagine it is just the final insult in a BC diagnosis.I do sympathise with all you ladies out there.I do hope one day they find a way to avoid it or beat it.
Love
Dot
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Hi Dot,
I’ve only just caught up with this thread, but will add my experience.
I’m a cath lab physiologist (guessing you’re probably a radiographer), so understand all of the risks that you’re listing.
I had a mast & ANC (not sure how many nodes though), and already have some minimal swelling in my hand. I’m also concerned about the additional risks of wearing a heavy lead apron, moving patients & equipment.
At the moment, I’m considering my options as I’m still on sick leave, but right now I think that I’m (a) not well enough to return to work & (b) certainly not willing to add to my lymphodaema risk in wearing a heavy lead.
I will watch this thread with interest & good luck with your decisions, Rebecca
Bahons 2
The Celtic gene and the number of nodes removed in clearance fact was told to me by my therapist here who was trained at the Vodder and recommended I went there. Whilst in Austria, I asked the therapist if she saw more right or left side lymhoedema- I was just making conversation. She said that it was about 80/20% left and right but didn’t know why. When discussing this with a fellow patient she told me about the difference in lymph system. This woman, although not medical, is an expert in lymphoedema. She has it in her legs following cervical cancer and in one arm following breast cancer. She has had it for over 20 years and is a mine of information on all things lymph! In fact, her life is dominated by her struggle to control it.
Hi Kelley
I dont recall hearing about the ‘celtic gene’ and lymphodema but it makes sense to me. My Mum had a very large swollen arm after her mastectomy which caused her a lot of problems. One of my sisters has battled with swollen ankes and legs for years .And I -after 19 nodes removed ,RX to axilla and Irish through and through -unsurprisingly developed Lymphodema a few months after finishing treatment . Happily though I was referred very quickly to my Lymphodema clinic and visit them every 6 months for a checkup ( and weigh in -aarrggh). My swelling is very slight -unless and until I overdo things and I quickly get a reality check. I am learning to be more circumspect and ask for help with repetitive/heavy tasks.
One thing though - mine is right sided (right Mast and right handed) but then again I do like to be different…