QUESTION! On Heredity LE

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QUESTION! On Heredity LE

Postby truckdriverwife » Fri Jun 08, 2007 6:53 am

ok maybe i shouldnt read some of these posts alone since ive dcared myself but a;; the talk of heredity le and of cancer my question is in 1974 my dad died of non-hodgekins lymphnoma it was so long ago i dont remember if any of his body was swollen .....could this happen to me and should the docs(for what good theyre not)know about my dad? i think it was in his neck when he was diagnosed it was alreafdy stage3
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Postby patoco » Sat Jun 09, 2007 11:49 pm

Lymphedema and secondary cancer (usually lymphoma - HL and NHL) is something that is just now finally beginning to be recognized and understood.

When I first had lymphoma, all the doctors could say was "huh?" Should your doc know about your dad? Yes...but the response will probably be that there is no connection.

This is another area where the doctors need education.

For most lymphers, it is assumed that they get secondary lymphatic cancers due to the immuno-deficient state of a lymphedema limb.

For some families such as mine, the incident ratio of hereditary lymphedema is so extremely high that it has been suggested that there may be a genetic factor involved.

In our Advocates for Lymphedema Yahoo group http://health.groups.yahoo.com/group/Ad ... ymphedema/
we recently had a discussion on this. I'll cut and paste it.

Wed May 9, 2007

My recent post on cutaneous lymphomas caused quite a flurry of emails
of list with requests that I share a bit more about my experience and
how you would recognize a malignancy secondary to lymphedema.

Before I share my own experience, I feel the need to lay a foundation
to help clear things.

I need also to repeat that I am not a medical professional and only
share from my own personal struggle with LE, the experiences of
others and from the research that I have done. If there are medical
professionals in the group that have additional information, we would
all greatly appreciate you feeling free to join in this discussion.

I want to say also, that there are several factors that appear to
contribute to one's susceptibility towards a malignancy with LE.

1) The length of time you have had the condition is a factor. The
cases I have studied or known about involve patients who have had LE
for a decade and more so decades.

2) The condition of the LE limb is also a factor. Remember, and this
is important, that the size of a limb with lymphedema does NOT
translate into the stage it is in. We so often see these
horrendously huge legs and assume that this is lymphedema at its
worse.

http://www.lymphedemapeople.com/thesite ... stages.htm

The staging is determined not by size, but by tissue condition. Late
stage lymphedema is when the limb has turned hard and fibrotic. It
is at this very hard tissue stage the LE'ers become more susceptible
to severe complications.

http://www.lymphedemapeople.com/thesite ... ations.htm

It is also a stage where the lymphedema may even become untreatable.

http://www.lymphedemapeople.com/thesite ... brosis.htm

3 ) The treatment received on the limb seems to also contribute
greatly to the possible development of the more serious
complications, which include malignancies.

The cases I know of involve lymphedema that received incorrect or no
treatment. Interestingly I also know of several LE'ers who had
debulking surgeries who have subsequently come down with lymphoma.
Whether there is a real tie in has yet to be determined by research,
but that is an interesting point.

This is another reason why I sound like such a broken record about
getting treatment promptly and in doing all you can do to prevent the
LE from worsening.

Why is it that malignancies secondary to lymphedema may be overlooked?

This is an interesting discussion in itself. There are numerous
reasons why lymphedema patients may be undiagnosed or misdiagnosed
with a secondary cancer.

Not long ago I had a well known and respected LE doc tell me that
they thought perhaps I didn't really have lymphoma. They said this
out of the blue without any review of the biopsies or the history of
my malignancy.

Their excuse was a simple one that is the cornerstone as to why these
cases are not diagnosed.

1) Biopsies in an area of lymphedema can give false positives. This
is because of the inflammation involved with lymphedema. This
inflammation may appear as a cancer when it isn't. Fortunately, the
initial surgeons involved in my biopsies understood this and we did
double biopsies of the tumor with the specimens being reviewed by
several pathologists, each one coming up with the same diagnoses.
While biopsies can provide a false positive, the reverse is also true
(I suspect more then is realized). They may simply dismiss a skin
condition or a biopsy as simple inflammation.

2) Just as biopsies are difficult in lymphedema so too are the
results that may be given by radiological exams. A PET for example
will pick up inflammation as a glowing spot, not being able to
distinguish between that and a real malignancy. This makes diagnosis
by radiology a very difficult process. Cancers like lymphomas are
notoriously hard to diagnose anyway. They often don't present
visibly until the disease has progressed into the later stages.
Often, there is no "warning" with lymphomas like there may be with
other cancers.

3) The lack of knowledge in the medical community is another factor
contributing to the poor diagnostic rate of secondary malignancies.
Most doctors, if they know anything of this subject will immediately
bring up lymphangiosarcoma (Stewart Treves Syndrome)

http://www.lymphedemapeople.com/thesite ... arcoma.htm

http://www.lymphedemapeople.com/thesite ... ndrome.htm

This dreaded cancer has long known to be associated with lymphedema.
It is fast moving, usually fatal and presents with immediate dermal
manifestations. So, it is easy see when it starts

http://images.google.com/images?
svnum=10&hl=en&gbv=2&q=stewart+treves+syndrome

http://images.google.com/images?svnum=1 ... giosarcoma

(you may have to cut and paste these links)

What is just NOW begin recognized are the other cancers forms I
mentioned in my earlier post. Kaposi's sarcoma, t-cell lymphoma and
b-cell lymphoma. It is interesting to note too, that Kaposi's
sarcoma used to be (and still is) thought of as a cancer of
HIV/AIDS. From the research done there, they discovered that "whoa"
this is something lymphedema patients get.

This is just a brief foundation…next I'll share a bit about my
experience and how I finally was diagnosed.

Get serious about treatment…be compliant!!!!!!!!!!!!

Pat


Part Two

May 9, 2007

Many of the emails ask me to share how I was diagnosed. To save
carpal tunnel :-)

this page gives a narrative of my experience up to the lung procedure
I had done in January, I haven't updated it since then.

http://patoconnor.oconnor.googlepages.c ... lymphedema

I really want to emphasis that this wasn't something to scare you,
just to inform. I didn't realize the reaction that would occur to
that post and msybe would have had second thoughts about posting it
had I known.

Please, don't think that because you have a skin plaque, or a nodule,
papillomatosis or an area of strange discoloration that it
automatically means you have cancer. Most of these are common to long
standing LE and are just benign. My diagnosis rested on in dept
biopsies of specific tumors and a small needle of the right inguinal
node.

They have biopsied these nodules (papillomatosis) - and of these all
are benign. That ugly skin plaque we with late stage lymphedema has
shown also to be benign.

The key is get treatment, get it early, be compliant and do all you
can do to keep the LE from geting worse.

Pat
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