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BRCA-L  December 1998

BRCA-L December 1998

Subject:

Re: lymphedema

From:

Karen Gray <[log in to unmask]>

Reply-To:

Breast Cancer Online Support Group <[log in to unmask]>

Date:

Mon, 14 Dec 1998 18:41:39 -0500

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

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The National Lymphedema Network is a wonderful resource and web site-- but
it is not unflawed in the opinion of a good many of us.  In particular
there is a lot of concern about what they say in their "prevention"
section.   For an active person, their guidelines amount to accepting one's
arm as partially disabled and in effect, require women to become partially
disabled.  While this may be the result of lymphedectomy in some cases,
there is no scientific and medical support that this is necessary for all
women who undergo axillary dissections.  Many women continue to work out,
and carry and lift heavy weights.  I personally believe that that the NLN
guidelines may actually contribute to women under-using and consequently
weakening their arms--and this, I believe, is more likely to contribute to
an injury that could result in lymphedema than the careful strengthening
and normal to substantial usage of the arm.  In addition I believe it
contributes to a mindset of excessive focus on the arm to the point of
creating a neurotic anxiety about the arm.  I am a real skeptic about the
NLN's god-like proclamation, made without good scientific support.  What
they state as fact is NOT factually supported by solid studies.

I know many women who get on with their life after lymphedectomy and I know
that there is very little certainty about what causes lymphedema.  So I
would suggest that one take the NLN's "prevention" list with a grain of
salt and instead seek to use and strengthen the arm so that it is unlikely
to be injured in normal activities.  ANY indication of injury and
especially infection or swelling should be taken seriously.  But many women
return to normal life with only partial adherence to NLN's list.  It is NOT
universally accepted and I'm concerned that when we understand the causes
of lymphedema more completely, some of the things on it will be found to be
contributing causes rather than preventative behaviors (especially the
over-protection).

Specifically:

1.Absolutely do not ignore any slight increase of swelling in the arm,
hand, fingers, or chest wall (consult with your doctor immediately).

--Limbs normally vary in the amount of fluid they have in them.  SLIGHT
swelling is likely to be insignificant if it is short term.  I tend to
agree with those doctors who say any significant swelling that persists
should be regarded as requiring evaluation.  Incidentally, our arms are not
exactly the same, so don't assume just because one arm is larger than the
other that it has lymphedema.

I don't see any problem with following the next two.  No one knows if they
are causally related to lymphedema but it is usually easy enough to avoid
them and they don't require life-style changes.
2.Never allow an injection or a blood drawing in the affected arm(s).
3.Have blood pressure checked in the unaffected arm.

But, regarding:
4.Keep the edemic arm, or "at-risk" arm, spotlessly clean. Use lotion
(Eucerin, Nivea) after bathing. When drying it, be gentle, but thorough.
Make sure it is dry in any creases and between the fingers.

--I think this will lead to a compulsive attitude that will be
psychologically unhealthy.  Care to avoid injury and to keep the arm and
hand reasonably clean is sensible.  But "spotlessly clean?"...that can only
be achieved with profoundly abnormal focus on the arm that the experience
of the vast majority of women indicates is not necessary.

And as to:
5.Avoid vigorous, repetitive movements against resistance with the affected
arm (scrubbing, pushing, pulling). 6.Avoid heavy lifting with the affected
arm. Never carry heavy handbags or bags with over-the-shoulder straps.

--Again the connection with lymphedema is not known and a good many women
who regularly do things of this nature without problems develop suggest
that this requires study before being assumed to be a true preventative.
An less-used arm WILL become a weaker one and as such WILL be more prone to
injury.  I recommend strongly against letting this happen.

I don't have any problem with the following either, and it makes sense:
7.Do not wear tight jewelry or elastic bands around affected fingers or
arm(s).

As to:
8.Avoid extreme temperature changes when bathing, washing dishes, or (no
sauna or hottub). Keep the arm protected from the sun.

--Again I know many women who do sauna and hottub bathing without problems.
 Where is the evidence for prohibiting this?

The following makes sense to me as generally wise.
9.Avoid any type of trauma (bruising, cuts, sunburn or other burns, sports
injuries, insect bites, cat scratches). 10.Wear gloves while doing
housework, gardening or any type of work that could result in even a minor
injury. 11.When manicuring your nails, avoid cutting your cuticles (inform
your manicurist).

As to:
12.Exercise is important, but consult with your therapist. Do not overtire
an arm at risk; if it starts to ache, lie down and elevate it. Recommended
exercises: walking, swimming, light aerobics, bike riding, and specially
designed ballet or yoga. (Do not lift more than 15 lbs.)

--15 lbs?  My grocery bags weigh more than this.  This is exactly the kind
of thing that concerns me.  Statements like this, as if they are matters of
fact when in truth they are only opinions unsupported by scientific
evidence and called into question by the vast experience of countless women
is really troubling.  I do think it is important to build up the strength
of the arm with some care and supervision if possible.  Excercise can
injure tissue and the goal is to strengthen without injury.

As to:
13.When travelling by air, patients with lymphedema (or who are at risk)
must wear a compression sleeve. Additional bandages may be required on a
long flight.

--Another statement as if the need to wear compression sl

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