Lymphedema education clinic tomorrow

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slv58
slv58 Member Posts: 1,216
edited June 2014 in Lymphedema

I know this is a bit late, but is there anything I should really ask when attending a lymphedema clinic tomorrow? I am not showing any signs at this time, but really want to be aware of what I can do to prevent this. I've never been to a hospital clinic, so I'm not sure what to expect. I am hoping I can get base measurements (although I've already had LX, SNB-3 nodes taken and am 22/33 rads)

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  • carol57
    carol57 Member Posts: 3,567
    edited August 2013

    Slv, definitely press for those baseline measures. They're still 'baseline' if you've had no symptoms, thank goodness! 

    You can find tons about what symptoms to look for at the wonderful stepup-speakout.org website, but while you're at the clinic, ask them to tell you their top warning signs. Ask what is the least symptom that warrants getting an evaluation. When would they want to see you?

    Ask for guidance on how to minimize the time it will take to get in that clinic, in the event you ever have symptoms. I don't know the protocols in Ontario or elsewhere in Canada, but here in the States it can literally take weeks to get on a lymphedema therapist's schedule for evaluation and treatment. If I were going to an educational event like the one you'll attend, I'd ask someone there to tell me what the process is, and how long it takes to kick into action if you get some swelling or other symptoms. Then--ask them for an insider scoop on how to make that window of time shrink a bit!

    You'll probably hear lots about risk reduction, like taking care of your skin and treating any cuts immediately, and many more. That's great, but I hope you'll also hear (or ask, if you need to) about any exercise or yoga programs that are available near you, that specifically tune in to helping minimize lymphedema risk. Getting stronger so that lifting heavy household items becomes easier is a common sense way to reduce the risk that lifting something heavy will trigger or worsen lymphedema. But developing that strength--getting there-- without causing LE problems can be tricky, so it's best if you can get some well trained help, if you want to pursue a fitness program that is most suited to minimize LE problems. Some cancer centers have fitness programs for cancer survivors, but they can be clueless about lymphedema risk-reduction needs. That's why I think it's smart to ask the LE clinic where they would send someone to exercise, if she's at risk of LE.

    Gosh, I feel like I'm rambling, but I hope some of this makes sense.  I'd love to hear what you think of the conference, if you have time in the next few days to tell us about it.

    Carol

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  • bhd1
    bhd1 Member Posts: 3,874
    edited August 2013

    Slv i never thought about le until i got it and looking back i don't know how i could have prevented it. But I think it is great that you are going to the meeting.

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  • slv58
    slv58 Member Posts: 1,216
    edited August 2013

    Thanks Carol and Barb. My BS said that she gets fewer than 2% of women who develop lymphedema after SNB but signed me up for the clinic after she saw how concerned I was due to the agressive radiation I'm getting. My RO really didn't have much to say when I asked him about it-I wasn't impressed.

    Carol I really appreciate the time you took to answer in such a detailed thoughtful way. I'm hoping that there will be lots of info and will let you know how it goes.

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  • carol57
    carol57 Member Posts: 3,567
    edited August 2013

    Shari, my BS told me that in her practice, fewer than 1% of women get LE after SNB.  I had SNB. I have LE. I've never gone back to see the woman after the first post-surgical checkup (she's 3 hours away) and so I suppose I am adding to her delusion that it doesn't happen.

    Shah and Vicini did an exhaustive review of LE risk studies to portray the range of risk percentages associated with various treatments and combinations of treatments. The ranges of risk percentages they found quoted in study reports are enormous, because there's such variation in study design: how researchers define and measure for LE; how long they follow the patients after the procedures; how large the population is; whether there's a control group. For lumpectomy with SNB and rads to the breast, the range of LE risks 'found' by the studies Shah and Vicini reviewed was from 3% to 23%.  They found the range of risks identified for the combination of lumpectomy and nodal rads was 9% to 65%. Their report does not give a risk assessment range for the combination of lumpectomy + SNB + nodal rads (which refers to rads to the axilla, instead of to the breast and not in addition to the breast, I believe).

    They were looking at arm LE, which can be measured, unlike truncal or breast LE, which is diagnosed via symptoms, not measurements. I have read and may even have a study in my library somewhere, that the incidence of breast and truncal LE may be increasing with the use of SNB, because the area affected is the direct lymphatic pathway for draining the breast of lymph. But we don't see a lot of stats on that, because breast/truncal is hard to measure, so hard to study. And most women who lke you are rightly concerned about their LE risk are visualizing arm LE, because we see women or photos of women in compression sleeves, and that's what we associate with LE risk.

    So, you can see how easy it is for a BS who does not want to frighten us out of any kind of lifesaving treatment (or in the case of SNB, evaluation) to quote a low LE risk for SNB. There are studies to support that view.  And as to a BS's own LE outcomes, well...are they following their patients and documenting the LE incidence for at least three years?  LE risk is lifetime, but most times it surfaces within the first three years after surgery.  I sure bailed on my BS, because I did not need follow up from her and 3 hours is too far to go for a visit I don't need and don't wish to pay for. I suspect I have lots of company in not needing longer term follow up, so how can my BS have any clue what her actual LE rates are?

    If you want to share the study I quoted with your BS, here are the study identifiers. I don't hava a link at the moment and cannot recall where I downloaded the pdf I have. If you want the study and cannot find it, PM me and I can email it to you.

    BREAST CANCER-RELATED ARM LYMPHEDEMA: INCIDENCE RATES,
    DIAGNOSTIC TECHNIQUES, OPTIMAL MANAGEMENT AND RISK
    REDUCTION STRATEGIES
    CHIRAG SHAH, M.D., AND FRANK A. VICINI, M.D., F.A.C.R

    Int. J. Radiation Oncology Biol. Phys., Vol. 81, No. 4, pp. 907–914, 2011

    What a worry-inducer my post is!  I don't mean to frighten you any more than your existing concern. Overall, some 40% of women with BC treatments seem to get LE, and that means 60% do not. I'll bet big time that the 60% is tilted toward the women who seek information and arm themselves (no pun intended) with strategies to reduce the LE risk.  You're doing just that. 

    I'm looking forward to hearing what the conference was like. 

    Carol

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  • slv58
    slv58 Member Posts: 1,216
    edited August 2013

    Hi Carol, I just finished the clinic and am waiting for my individual apt. with nurse. I found it quite good and informative. There were about 8 of us. We were given a booklet which covers all the information that the nurse covered in the presentation. I did ask lots of questions and each one was answered to my satisfaction. One thing I was a little surprised at was that a compression sleeve was recommended to be worn whenever you were active. I thought I would only need it if I noticed symptoms. Also it was recommended to see a therapist 1-2 times a month for massage (and yet it is not covered by OHIP and very few private insurance will cover the cost). It seems insane that a condition that is caused by "treatment" is not covered fully by some kind of insurance to treat.

    I believe I will be measured for a sleeve but will let you know!

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  • carol57
    carol57 Member Posts: 3,567
    edited August 2013

    Shari,

    My take on the sleeve-while-active recommendation is that there's active, and then there's ACTIVE. If you lift weights, it's a good idea.  If you're washing windows, maybe, because if you have a lot of windows, that's highly repetitive. If you're doing a speedy walk, I'm not so sure.  With an LE diagnosis, yes, but with no symptoms? Not so sure about that.  When you have your individual appointment you might ask for clarification on that.

    As to preventative MLD manual lymph drainage, aka 'massage,' I have not heard of that being recommended as standard treatment for someone not diagnosed with LE.

    I hope Binney or Kira or others with more knowledge than I have will comment on that.

    Do stay tuned in to symptoms, that's for sure! If you feel tingling, or feel a heaviness or just a persistent ache, that's a signal to seek professional evaluation.  If you exercise and get some muscle ache afterward, ask yourself if it's in only one arm, i.e. your at-risk arm, or in both.  And of course, watch for swelling.

    Keep us posted!

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