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Q: Unusual cancer ( Answered 5 out of 5 stars,   5 Comments )
Question  
Subject: Unusual cancer
Category: Health > Medicine
Asked by: clawrence-ga
List Price: $30.00
Posted: 28 Dec 2004 13:08 PST
Expires: 27 Jan 2005 13:08 PST
Question ID: 448375
Hi,

About 18 months ago my mom had an urgent operation to remove her
appendix.  She was 78 at the time, now the doctors are saying she has
a very rare form of cancer that they only see once or twice a year,
where the cancer is mobile within her gut.  It apparently moves around
but does not / has not yet attached to any particular organ.

Any ideas what this condition might be?  I am going to see her
specialist in January but want to prepare etc.

The doctors are saying, that it might be better not to undergo chemo
or an operation instead to let nature take its course, whilst
monitoring the situation.  Which sounds very unsatisfactory but might
be OK if its a very slowly developing condition.

My mother is in very good health at this time, but we are all very concerned.

Any links etc to useful sites would help etc.

Thanks

Adrian

Request for Question Clarification by pinkfreud-ga on 28 Dec 2004 13:30 PST
Do recall hearing the term "lymphoma" used in describing your mother's
condition? There are several types of lymphomas which move from place
to place through the lymphatic system before moving into organs and
bone marrow.

Clarification of Question by clawrence-ga on 28 Dec 2004 14:03 PST
Hi,

No - I don't think this is a lympathic related condition.

It appears that the appendix had a number of suspect cells when it was
removed (pre-cancerous) and these have spread.

Mum has undergone a scan using a electro-magnetic scanning type
machine and the condition has shown up as three mobile dark areas on
the scan in the gut area.

She has been referred from one specialist to another more specialist
guy we are seeing in January.  I have a degree in Microbiology but it
was 10 years ago, so I have some understanding etc.

I have not had access to my mum doctors until now etc.

Adrian

Clarification of Question by clawrence-ga on 28 Dec 2004 14:05 PST
The doctors told my brother, this is a very rare condition and is only
seen once or twice in the hospital which is one of the largest in the
UK.

Thanks again for your help

Adrian

Request for Question Clarification by crabcakes-ga on 29 Dec 2004 09:54 PST
Hello clawrence,

  I believe I *MAY* have an answer for you,a rare form of cancer,
possibly the kind to which you refer.

  Could you tell me of any symptoms your mother may be having, such as
bloating, vomiting, bloody stools, trouble eating or swallowing? Can
the doctors feel a mass? Was a biopsy performed to determine the type
of cancer? Any additional information can be helpful.

  Regards,
  crabcakes

Clarification of Question by clawrence-ga on 29 Dec 2004 11:50 PST
Thanks,

Mom has no signs at all at the moment, 18 months ago she was taken
ill, and rushed into hospital which was due to an appendix near to
bursting.  This was sent to the lab and a few suspect cells
indentified.

She has been having blood test and the most recent about 2 months ago
showed a rise in a chemical in her blood ( Which I presume indicates
cancer activity)

She has been had 2 scans the first about 12 months ago was clear, the
most recent about 6 weeks ago showed 3 dark areas in her gut.

Sorry I don't have more information

Adrian

Clarification of Question by clawrence-ga on 29 Dec 2004 11:51 PST
Apprarently the type of cancer is motile and has not yet infected
other organs, but is sort of floating on the surface of a few.

Adrian
Answer  
Subject: Re: Unusual cancer
Answered By: crabcakes-ga on 30 Dec 2004 11:53 PST
Rated:5 out of 5 stars
 
Hello Adrian/clawrence,
  
  I?d like to express my sympathy over receiving such news about your
mother, particularly at this otherwise festive time of year.

  I have included information on rare cancers in the answer that
follows. Please understand that without lab results, including blood
tests, biopsy and any scan reports, it would be impossible to know
with certitude which type of cancer your mother has, or if it is even
among the forms in my answer. I have included types that seem to be of
the kind you describe, and as you have no other information with which
to work, this is as far as I can go.

  You use the word ?mobile? when referring to your mother?s cancer.
This term is often used when describing conditions of lymph nodes, and
means the affected lymph node is ?moveable?,  as opposed to fixed, or
?in-situ?. In-situ is Latin meaning ?in it?s original place?,  and
when referring to a tumor indicates it is in one place, and has not
spread. It may be that affected lymph nodes are what your mother?s
scan is revealing.

  ?Nodes that are hard, non-tender, and irregular are very suspicious.
Normal nodes are mobile beneath the skin. Fixed nodes, those that are
firmly attached either to the skin or to deeper tissues, are often
malignant.?
http://www.drgreene.com/21_783.html

?Lymph nodes can usually be distinguished from other growths because
they generally feel small, smooth, round or oval-shaped and somewhat
mobile when attempts are made to push them sideways.?
http://www.diagnose-me.com/cond/C439055.html


Rare Abdominal Cancers:
=======================

GISTs
-----
  GIST (Gastrointestinal stromal tumor). Previously, these cancers were known as
leiomyomas, leiomyoblastomas, and/or leiomyosarcomas. GISTs belong to
a family of cancers called ?soft tissue sarcomas? , which are rare
tumors that lead to tumors of muscle, fat, bone and cartilage.
?Specifically, GIST is related to the muscle-like nerve cells which
are called the Interstitial Cells of Cajal, which coordinate the
automatic movements of the GI tract.?
 ? People with early stage GIST often do not have any symptoms of the
disease. Most GISTs are diagnosed after a person develops symptoms.
These may include:
?vomiting 
?fatigue due to anemia (low blood counts) 
These symptoms may be the result of GIST or of other less serious
causes. A person with these symptoms should discuss them with their
doctor.?
http://www.novartisoncology.com/page/gist.jsp


  You can view a short, well-done, explanatory video on GISTs on this site:
(Just click on ?Watch video?. If you have a slow internet connection,
you can read the transcript instead.)
http://www.targettumors.org/tumors/gist.asp


  ?In the US: GISTs are rare tumors, constituting less than 3% of all
GI malignant neoplasias?
http://www.emedicine.com/radio/topic388.htm

Therapy & Intervention
  ?Intervention: Previously, the only proven treatment was surgical
resection (DeMatteo, 2000; Lehnert, 1998). Radiation therapy and
chemotherapy have been ineffective. However, the drug imatinib
mesylate (STI-571; Novartis, Basel, Switzerland), sold under the trade
name Gleevec in the United States, is currently being studied in
clinical trials at several institutions.
  Imatinib mesylate is an inhibitor of tyrosine kinases. These include
the KIT receptor and the PDGRF receptors and their oncogenic activated
forms (Tamborini, 2004).
  As of late 2004, imatinib mesylate is in clinical stage 3 trials.
The drug has proven effective in early- and late-stage disease.
Posttreatment, liver lesions become better defined and cystlike (see
Image 4).
  Imatinib mesylate initially helps control disease in 80% or more of
patients, with an objective response observed in 50-60% of cases;
10-15% had progression of disease despite therapy (Duffaud, 2003).
Others develop resistance following initial responses. Factors thought
to be involved include gene amplification and the presence of
additional mutations, which may lend the GIST tumors an inherent
resistance (Sawaki, 2004).?
http://www.emedicine.com/radio/topic388.htm


  ?The main treatment is still surgery to remove the tumor. If the
cancer has spread to one or two sites in the abdomen, the surgeon may
still remove the main tumor and try to remove these additional tumors.
Clinical trials are in progress to see if Gleevec should be
administered after surgery. If the cancer cannot be entirely removed,
then your doctor may start you on Gleevec immediately.?
http://www.cancer.org/docroot/CRI/content/CRI_2_4_4x_Treatment_Choices_-_GIST.asp?rnav=cri

  ?Recently a new drug previously used to treat a type of leukemia has
been shown to be effective in treating GIST. Because the drug, called
GlivecŪ (imatinib mesylate Novartis Pharmaceuticals Corp, East
Hanover, NJ), is a new treatment, doctors are still evaluating how
best to use it. Using clinical trials, doctors are working to find out
how long Glivec can control tumor growth, how long a patient needs to
take the drug, and the best ways this treatment should best be used to
help patients with all stages of GIST in the future.?
http://www.novartisoncology.com/page/gist.jsp


See an MRI image of a GIST on this eMedicine site:
http://www.emedicine.com/radio/topic388.htm#target1



Pseudomyxoma  Peritonei
=======================   

  Pseudomyxoma  Peritonei ((SOO-doe-mix-O-ma PAIR-ih-TOE-nee-I), is a
rare cancer that originates from  the appendix. Many patients show no
symptoms and the condition may lie hidden for years. CEA and CA19.9
are tumor markers that are elevated in the blood, and thus detectable
with a blood test, in this condition.

  ?A build-up of mucus in the peritoneal cavity. The mucus may come
from ruptured ovarian cysts, the appendix, or from other abdominal
tissues, and mucus-secreting cells may attach to the peritoneal lining
and continue to secrete mucus.?
http://www.cancer.gov/dictionary/db_alpha.aspx?expand=p


  ?Unlike more "common" cancers, PMP is not generally treated with
systemic chemotherapy or radiation.  Aggressive surgery is usually the
treatment of choice.  Locating a skilled surgeon experienced in
treating the disease is imperative.  If left unchecked the disease
becomes more malignant and spreads throughout the organs of the
abdominal or peritoneal cavity.?

http://www.pmppals.org/pseudomyxoma_peritonei.htm

http://www.surgicaloncology.com/atintro.htm

http://www.surgicaloncology.com/atintro.htm

?This is a tumour of the appendix that fills the lining of your
abdomen with a jelly-like substance (mucus). The progress of the
disease is slow. Without surgery, the mucus tumour will eventually
fill the whole abdomen and stop the body?s ability to absorb food.
Surgery is necessary to reduce the spread of the tumour, and the
procedure is called ?cytoreductive? surgery. This will remove most or
all the visible tumour in your abdomen and place chemotherapy directly
into your abdomen. By doing this any tumour cells that have not been
removed by surgery should be killed by the chemotherapy. Figure 1
shows common sites of disease.?
Christie Hospital Patient Information
http://www.christie.nhs.uk/patientinfo/booklets/TextBooklets/pmp/pmp.htm#whatis
http://www.christie.nhs.uk/contact_us/contact_us.htm


  ?Pseudomyxoma peritonei (PMP) is a poorly understood condition
characterized by disseminated intraperitoneal mucinous tumors, often
with mucinous ascites. The term PMP has been applied historically as a
pathologic diagnostic term to both benign and malignant mucinous
neoplasms that produce abundant extracellular mucin, resulting in a
variable and poorly predictable prognosis.?

?Pseudomyxoma peritonei remains a fatal disease. However, extensive
surgical cytoreduction combined with intraoperative heated
intraperitoneal chemotherapy (HIPEC) has recently emerged as a new
treatment modality, which might improve survival.
METHODS: Patients underwent treatment if the tumour appeared to be
technically resectable on preoperative abdominal computed tomography
and there were no distant metastases. After aggressive surgical
cytoreduction, HIPEC with the administration of mitomycin C was
performed for 90 min. Depending on histological grading, patients
received adjuvant 5-fluorouracil and leucovorin therapy.
RESULTS: Forty-six patients were treated. Optimal surgical
cytoreduction was obtained in 40 patients. Postoperative surgical
complications occurred in 18 patients. Four patients died as a direct
result of the treatment. Bone marrow suppression due to mitomycin C
toxicity occurred in 22 patients. There was no other major toxicity
related to the HIPEC procedure. After a median follow-up of 12 months,
40 patients are alive, eight of whom have proven recurrence. The
actuarial survival rate (Kaplan-Meier) at 3 years was 81 per cent.
CONCLUSION: These results confirm that extensive surgery combined with
HIPEC is feasible in patients with pseudomyxoma peritonei and that
improved long-term survival might be achieved.?
http://www.thedoctorsdoctor.com/diseases/pseudomyxoma_peritonei.htm

http://content.nejm.org/cgi/content/full/350/15/e13

An article from the Pseudomyxoma Peritonei Centre, Basingstoke, UK.
http://www.extenza-eps.com/extenza/loadHTML?objectIDValue=51759&type=abstract

Related:

Malignant Ascites
-----------------

http://www.tirgan.com/ascites.htm

http://www.asciteshelp.com/what-is-ascites.htm

http://www.fpnotebook.com/GI37.htm

  ?Malignant tumors of the mesentery and peritoneum, which are rare,
include mesothelioma (related to asbestos exposure), fibrosarcoma, and
leiomyosarcoma. Symptoms and signs include vague abdominal pain and
bloating caused by traction or compression of adjacent structures and
intestinal obstruction. Weight loss, anorexia, and weakness can also
occur. Patients with mesothelioma have chylous ascites.
  Diagnosis is made with an upper GI series, barium enema, and CT,
which in combination reveal extrinsic compression or signs of invasion
of the small or large bowel and other local structures. Surgery is the
only effective treatment for either cure or palliation. However,
chemotherapy and radiation therapy may improve results for
mesothelioma.? (Found at the very bottom of this page)
http://www.merck.com/mrkshared/mm_geriatrics/sec13/ch113.jsp

  Two forums discussing pseudomyxoma peritonei
http://www.cancercompass.com/message-board/message/all,1170,0.htm

http://www.cyberhideaway.com/forums/cancersupport/




Carcinoid Syndrome
-------------------
  ?Appendix cancer: A malignancy of the appendix, accounting for about
1 in 200 of all gastrointestinal malignancies. Although unusual,
cancer of the appendix can range in type. The most common type of
appendiceal cancer is carcinoid tumor with adenocarcinoma next. Tumors
of the appendix often present with peritoneal seeding of the malignant
cells. Advances in treatment have raised survival rates to about 80%.?
http://www.medterms.com/script/main/art.asp?articlekey=23185

  ?Gastrointestinal carcinoid tumors grow slowly. Most of them occur
in the appendix (an organ attached to the large intestine), small
intestine, and rectum. It is common for more than one tumor to develop
in the small intestine. Having a carcinoid tumor increases a person's
chance of getting other cancers in the digestive system, either at the
same time or later.?
http://www.acor.org/cnet/258021.html

  ?It occurs because, distributed throughout the body, are a group of
specialized cells called neuro-endocrine cells. The cells are normally
present, in small collections, in the lungs and in the
gastrointestinal tract. Their function is to produce small amounts of
hormones and chemicals to modify and refine the normal physiological
function of these two organs.
What causes them to grow and become malignant is not known but when
they do, they can produce copious amounts of unneeded chemical and
hormones which produce the carcinoid syndrome.

  These rare cancers occur in the lung, the small intestine, the
appendix and the rectum most commonly. Since serotonin is the
commonest chemical they produce, hot flashes, rapid heart beat,
wheezing and diarrhea are frequent complications of having the cancer.
But they can also produce other hormones that effect the production of
steroids, parathyroid and thyroid hormones, diarrhea causing proteins,
insulin and glucagon.?
http://www.medonc.com/carcinoidsyndrome.htm

?Neuroendocrine/carcinoid tumors are rare cancers. About 2,500 tumors
are diagnosed each year in the United States. About three-fourths of
tumors appear in the digestive system, including the stomach, small
bowel, appendix, and rectum. Most of the remaining tumors occur in the
lungs. Gastric neuroendocrine/carcinoid tumors originate within
certain hormone-making cells of the digestive or gastrointestinal
system. Growth of this cancer is slow. There are often no signs of
disease. Usually, when symptoms arise, the tumor is already in an
advanced stage.?
http://www.jwci.org/AboutCancerColon/FAQsNeuro.htm


You mentioned blood tests showing a ?rise of a chemical in her blood?.
This type of cancer elevates blood levels of serotonin, measurable by
blood tests, and 5-hydroxyindoleacetic acid (5-HIAA), measured by
collecting a 24 hour urine sample.


Appendiceal tumors

  ?Appendix tumors are unusual, accounting for 0.4% of all of the
gastrointestinal tract malignancies. Although rare, the spectrum of
malignant disease is complex and has lead to confusion in accurate
description of the natural history of these tumors. Consequently, many
errors in diagnosis and treatment have occurred. Perhaps the most
glaring error in management occurs in women who have ovarian tumors as
a result of a perforated primary mucinous tumor of the appendix.
Appendiceal tumors present with peritoneal seeding in a majority of
patients. Dissemination to lymph nodes or to liver is extremely
unusual. Advanced treatments of peritoneal carcinomatosis or
peritoneal adenomucinosis have changed these survival rates from zero
to approximately 80% for all patients.?
http://www.surgicaloncology.com/atintro.htm

  Other possibilities include ovarian, peritoneal cancer, or cancer of
the lymphatics.
  "In stage III, one or both of the following are present: (1) The
cancer has spread beyond the pelvis to the omentum (the fatty layer
that covers and pads organs in the abdomen) and other areas within the
abdomen, such as the surface of the liver or intestine. (2) The cancer
has spread to the lymph nodes. The average five-year survival rate for
this stage is 20%."
http://adam.about.com/reports/000092_6.htm

  "In ovarian tumor is a growth of abnormal cells that may be either
noncancerous (benign) or cancerous (malignant). Although benign tumors
are made up of abnormal cells, these cells don't spread to other body
tissues (metastasize). Malignant cells metastasize and may spread
directly into other tissues, or may detach from the original tumor
site and spread through your body by way of blood vessels or lymph
nodes.

Although the exact cause of ovarian cancer is unknown, three basic
types of tumors exist and are designated by where they form in the
ovary. They include:

    * Epithelial tumors. About 90 percent of ovarian cancers develop
in the epithelium, the thin layer of tissue that covers the ovaries.
This is the most common form of ovarian cancer and generally occurs in
postmenopausal women.
    * Germ cell tumors. These tumors occur in the egg-producing cells
of the ovary and generally occur in younger women.
    * Stromal tumors. These tumors develop in the estrogen- and
progesterone-producing tissue that holds the ovary together."
http://www.cnn.com/HEALTH/library/DS/00293.html

"LPD is a condition of small, firm, white-to-gray nodules studding and
covering the peritoneal surface. Histologically, these nodules are
composed mainly of smooth muscle cells with variable amounts of
decidualization and hyalinization. Minimal mitotic activity is
observed, with no evidence of atypia or nuclear pleomorphism. The
histogenesis of LPD has been a point of debate because of the
discrepancy of ultrastructural studies. Regardless of whether the
cellular content is decidual cells or smooth muscle cells,
embryogenesis involves multipotential mesenchymal stem cells.
Excessive hormonal stimulation with estrogen or progesterone has been
recognized as a potential stimulus for LPD development. Although once
believed to be an unquestionably benign process, cases have been
reported of patients with LPD that subsequently evolved into
aggressive leiomyosarcomas."
http://www.emedicine.com/med/topic1795.htm

  "Like ovarian cancer, peritoneal cancer usually creates a tumor on
the ovary or elswhere in the pelvic region. This tumor will spit
little pieces of what looks like chicken fat to other nearby organs.
These are called lesions or adhesions. The treatment, beit surgery,
chemotherapy or both will depend on the grade and stage of the cancer.
The same scale as ovarian cancer is used."
http://electrobytes.net/cancer/



Additional Reading

Treatment Guidelines
http://www.nccn.org/patients/patient_gls.asp

National Cancer Institute
http://seer.cancer.gov/csr/1975_2000/

Gastrointestinal Carcinoid Tumors
http://www.acor.org/cnet/258021.html

Cancer Survivor Support
http://www.acscsn.org/

Second Opinions and Choice of Care
http://www.conversationsincare.com/



  Your question seems to be asking not only about the type of cancer
affecting your mother, but whether what is known as ?watchful waiting?
is the best course of action. It appears the doctors have decided to
adopt the watchful waiting approach for your mother, considering her
age. One needs to balance the quality versus quantity here. Would your
 mother prefer to suffer the possible side effects of chemotherapy or
radiation that may or may not prolong her life, or to continue as she
is, feeling well and enjoying life? It?s a very tough decision. It is,
of course, up to the physician to determine the best course of therapy
for your mother, should treatment be implemented.

  This article, by Andrea Petersen, a reporter for the Wall Street may
help you decide on a course of treatment for your mother:

  ?Doctors are getting smarter about treating elderly cancer patients,
led by advances in treatment and a growing understanding of what
happens as a person ages.
  As a result, many older patients who in the past might have been
denied treatment because of their advanced age are now being given
life-prolonging regimens. At the same time, frailer patients with
slow-growing cancer are often being allowed to live out their lives
without aggressive, toxic treatment.
  The shift is being made possible by new and better ways of sizing up
how well patients will tolerate medication before they get their first
chemotherapy dose. These more-sophisticated geriatric assessments take
into account not just health status and age but also more subtle
measures of vigor?such as whether a patient still drives or uses the
bus?that are linked to life expectancy.?

  ?After surgery, a new doctor told me that I have ovarian cancer,
stage three B, and have about six months to live. He said I could do
chemotherapy but would be sick the rest of my life and it may prolong
my life at the most two ? maybe two and a half ? years. I was
encouraged not to do chemo.?
http://www.cancercenter.com/cancer-survivors/terry-huggins.cfm

Watchful Waiting-This relates to prostate cancer, but may be helpful none the less
http://prostate-help.org/cawwmai.htm

  ? If the tumor cannot be completely removed by surgery, treatment is
usually palliative therapy to relieve symptoms and improve the
patient's quality of life. This may include the following:
?  Resection, cryosurgery, or radiofrequency ablation to remove as
much of the tumor as possible.
?  Chemoembolization to shrink tumors in the liver.
http://www.nci.nih.gov/cancertopics/pdq/treatment/gastrointestinalcarcinoid/Patient/page5

Chemotherapy
http://www.cancer.org/docroot/eto/content/eto_1_6x_general_questions_and_answers_about_chemotherapy.asp
  ?Doctors offered three options. They could do nothing. And Jason had
the legal right to choose that. They could fire the big guns ? harsh
chemotherapy that would put him in the hospital for several days every
month. Or they could try a compromise treatment that they hoped was
milder, yet effective.
Jason always had a high tolerance for pain. But the deep weakness and
debilitating nausea from the chemotherapy felt like torment to him. He
was already talking about quitting by the time they got to the beach.
His parents wanted him to relax in the sun. His two younger brothers,
younger sister and several friends who went along on the trip tried to
keep his spirits up. But the decision loomed out there.
Tired and weak, Jason missed, even mourned, his formerly active life ?
the robust health and daredevil feats of in-line skating on nearly
anything in his path.?
http://tennessean.com/local/archives/04/12/62830768.shtml?Element_ID=62830768

 

  ?Chemotherapy has a purely palliative role and it is both reasonable
and ethical practice to offer observation alone to patients who are
otherwise stable and well or who have no symptoms directly
attributable to metastatic disease.?
http://www.nctrf.nf.ca/Corec.htm


  Please keep in mind that this answers is for informational purposes
only, and is not intended to diagnose, treat, or replace sound medical
advice from a licensed physician.

  If any part of my answer is unclear, or you believe I have not found
the correct form of cancer, I will be glad to offer further
assistance, before you rate this question. Simply click on the Answer
Clarification button, to ask for clarification of this answer.

I wish your mother the best!
Sincerely,
crabcakes

Search Terms:
Appendiceal cancer
Appendix + cancer
GISTS
Rare carcinoma abdominal
Rare cancer gut
clawrence-ga rated this answer:5 out of 5 stars
Thanks very helpful.

Comments  
Subject: Re: Unusual cancer
From: frde-ga on 29 Dec 2004 02:02 PST
 
About Chistmas 1995 my father displayed all the signs of appendicitis
- after much mucking about in a UK hospital they opened him up and
found a growth on the appendix.
- biopsy showed that this was an extremely rare strain of ....

After a bit they opened him up again, and found that the darn thing
had spread like a 'jelly' throughout the stomach cavity.
By now he was at the Royal Marston Oxford.
He declined chemo etc and cleaned up his act diet, and exercise wise,
not that there was much wrong before. He lasted just over two years -
March 98.

Oddly he did not seem to get secondaries, mainly a painfully swollen gut.

It sounds similar to me. I am sorry for you and your mother.
Subject: Re: Unusual cancer
From: clawrence-ga on 29 Dec 2004 05:53 PST
 
Thanks,

Do you the name of the condition, I could then use Google to research it.

Adrian
Subject: Re: Unusual cancer
From: frde-ga on 31 Dec 2004 00:41 PST
 
Adrian, I do not know the name and it will take a few days to find out.

However, Pseudomyxoma Peritonei in Crabcakes's excellent answer, fits
the bill 100%
- in my Father's case the appendix had already erupted before they
'discovered' the problem, although it could and should have been
discovered earlier if it were not for a grossly incompetent and
irresponsible gastric consultant at IIRC Cheltenham.

I can give you further factual details, but would prefer not to do so in public.
Subject: Re: Unusual cancer
From: jstanhope-ga on 13 Jan 2005 11:54 PST
 
Hello.

If it is Pseudomyxoma Peritonei (PMP), there is another support group
I highly suggest you try: 
http://health.groups.yahoo.com/group/pmpbellybuttons

It's members only (not hard to join, just explain about your mother),
but the people there have a lot of personal experience with PMP.

Jennifer
Subject: Re: Unusual cancer
From: answerzman-ga on 09 Mar 2005 09:51 PST
 
You can find a list of articles explaining mesothelioma and its causes
on http://www.diagnosismesothelioma.info/articles-mesothelioma.html

There is also a list of articles and links to other mesothelioma websites there.

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