My Blog

Years ago, Gilda Radner died of ovarian cancer. Her symptoms
were inconclusive, and she was treated for everything under
the sun until it was too late. This blood test finally identified
her illness but alas, too late. She wrote a book to heighten awareness.
Gene Wilder is her widower.

KATHY’S STORY: this is the story of Kathy West. As all of you know,
I have Primary Peritoneal Cancer. This cancer has only recently been
identified as its OWN type of cancer, but it is essentially Ovarian Cancer.

Both types of cancer are diagnosed in   the same way, with the "tumor marker"
CA-125 BLOOD TEST, and they are   treated in the same way - surgery to remove
the primary tumor and then   chemotherapy with Taxol and Carboplatin.

Having gone through this ordeal, I want to save others from the same fate.
That is why I am sending this message to you and hope you will print it
and give it or send it via E-mail to everybody you know.

One thing I have learned is that each of   us must take TOTAL responsibility
for our own health care. I thought I had done that because I always had an
annual physical and PAP smear, did a monthly Self-Breast Exam, went to the
dentist at least twice a year, etc. I even insisted on a sigmoidoscopy and
a bone density test last year. When I had a total hysterectomy in 1993,
I thought that I did not have to worry about getting any of the female
reproductive organ cancers.

LITTLE DID I KNOW. I don’t have ovaries (and they were HEALTHY when they
were removed), but I have what is essentially ovarian cancer.   Strange, isn’t it?

These are just SOME of the things our Doctors never tell us: ONE out of every
55 women will get OVARIAN or PRIMARY PERITONEAL CANCER.

The "CLASSIC" symptoms are an ABDOMEN that rather
SUDDENLY ENLARGES and CONSTIPATION and/or DIARRHEA.

I had these classic symptoms and went to the doctor. Because these symptoms seemed
to be "abdominal", I went to a gastroenterologist.. He ran tests that were designed
to determine whether there was a bacteria infection; these tests were negative, and
I was diagnosed with "Irritable Bowel Syndrome". I guess I would have accepted this
diagnosis had it not been for my enlarged abdomen. I swear to you, it looked like
I was 4-5 months pregnant!  I   therefore insisted on more tests.

They took an X-ray of my abdomen; it was negative. I was again assured that I had
Irritable Bowel Syndrome and was encouraged to go on my scheduled month-long trip
to Europe. I couldn’t wear any of my slacks or shorts because I couldn’t get them
buttoned, and I KNEW something was radically wrong. I INSISTED on more tests, and
they reluctantly) scheduled me for a   CT-Scan (just to shut me up, I think).
This is what I mean by "taking charge of our own health care."

The CT-Scan showed a lot of fluid in my abdomen (NOT normal). Needless to say,
I had to cancel my trip and have FIVE POUNDS of fluid drawn off at the hospital
(not a pleasant experience I assure you), but NOTHING compared to what was
ahead of me.

Tests revealed cancer cells in the fluid. Finally, finally, finally, the doctor
ran a CA-125 test, and I was properly diagnosed.

I HAD THE CLASSIC SYMPTOMS FOR OVARIAN CANCER, AND YET THIS SIMPLE CA-125
BLOOD TEST HAD NEVER BEEN RUN ON ME, not! as part of my annual physical exam
and not when I was symptomatic. This Is an inexpensive and simple blood test!

PLEASE, PLEASE TELL ALL YOUR FEMALE FRIENDS AND RELATIVES TO INSIST ON A CA-125
BLOOD TEST EVERY YEAR AS PART OF THEIR ANNUAL PHYSICAL EXAMS.

Be forewarned that their doctors might try to talk them out of it, saying,
IT ISN’T NECESSARY." Believe me, had I known then what I know now, we would have
caught my cancer much earlier (before it was a   stage 3 cancer).
Insist on the CA-125 BLOOD TEST; DO NOT take "NO" for an answer!

The normal range for a CA-125 BLOOD TEST is between zero and 35. MINE WAS 754.
(That’s right, 754!). If the number is slightly above 35, you can have another
done in three or six months and keep a close eye on it, just as women do when they
have fibroid tumors or when men have a slightly elevated PSA test
(Prostatic Specific Antigens) that helps diagnose prostate cancer.

Having the CA-125 test done annually and alert you early, and that’s the goal
in diagnosing any type of cancer - catching it early.

Do you know 55 women? If so, at least one of them will have this VERY AGGRESSIVE cancer.
Please, go to your doctor and insist on a CA-125 test and have one EVERY YEAR for the
rest of your life.

And forward this message to every woman you know, and tell all of your
female family members and friends. Though the median age for this cancer
is 56, (and, guess what, I’m exactly 56), women as young as 22 have it. 
Age is no factor.

A NOTE FROM THE RN:
Well, after   reading this, I made some calls. I found that the CA-125 test is
an ovarian screening test equivalent to a man’s PSA test prostate screen
(which my husband’s doctor automatically gives him in his physical each year
and insurance pays for it). I called the general practitioner’s office about
having the test done. The nurse had never heard of it. She told me that she doubted
that insurance would pay for it. So I called Prudential Insurance Co, and got the
same response.  Never heard of it - it won’t be covered.

I explained that it was the same as the PSA test they had paid for my husband
for years. After conferring with whomever they confer with, she told me that
the CA-125 would be covered.

It is $75 in a GP’s office and $125 at the GYN’s. This is a screening test that
should be required just like a PAP smear (a PAP smear cannot detect problems with
your ovaries). And you must insist that your insurance company pay for it.

Gene Wilder and Pierce Brosnan (his wife had it, too) are lobbying for women’s health
issues, saying that this test should be required in our physicals, just like the
PAP and the mammogram.

PLEASE TAKE A MOMENT TO SEND THIS OUT TO ALL THOSE YOU CAN. 
BE IT MALE OR FEMALE, IT SHOULD NOT MATTER, AS THEY CAN FORWARD
IT ALSO TO THOSE LOVED ONES THEY KNOW.

On their return from their trip, the father asked his
son, "How was the trip?" "It was great, Dad." "Did
you
see how poor people can be?" the father asked. "Oh
Yeah" said the son. "So what did you learn from
the trip?" asked the father.

The son answered, "I saw that we have one dog and they
had four. We have a pool that reaches to the middle of
our garden and they have a creek that has no end. We
have imported lanterns in our garden and they have the
stars at night. Our patio reaches to the front yard
and they have the whole horizon.

We have a small piece of land to live on and they have
fields that go beyond our sight. We have servants who
serve us, but they serve others. We buy our food, but
they grow theirs. We have walls around our property to
protect us, they have friends to protect them."

With this the boy’s father was speechless. Then his
son added, "Thanks dad for showing me how poor we are."

In November, a rare kind of breast cancer
was found. A lady developed a rash on her breast,
similar to that of young mothers who are nursing.
Because her mammogram had been clear, the doctor
treated her with antibiotics for infections.
After 2 rounds, it continued to get worse,
so her doctor sent her for another mammogram.
This time it showed a mass. A biopsy found a fast
growing malignancy. Chemo was started in order to
shrink the growth; then a mastectomy was performed;
then a full round of Chemo; then radiation. After about
9 months of intense treatment, she was given a clean
bill of health. She had one year of living each day to
its fullest! Then the cancer returned to the liver area.
She took 4 treatments and decided that she wanted quality
of life, not the after effects of Chemo. She had 5 great
months and she planned each detail of the final days.      
After a few days of needing morphine, she died.

She left this message to be delivered to women everywhere:

Women, PLEASE be alert to anything that is not normal,
and be persistent in getting help as soon as possible.

Paget’s Disease: This is a rare form of breast cancer,
and is on the outside of the breast, on the nipple and
aureole It appeared as a rash, which later became a lesion
with a crusty outer edge. I would not have ever suspected
it to be breast cancer but it was. My nipple never seemed
any different to me, but the rash bothered me, so I went to
the doctor for that. Sometimes, it itched and was sore,
but other than that it didn’t bother me. It was just ugly
and a nuisance, and could not be cleared up with all the creams
prescribed by my doctor and dermatologist for the dermatitis
on my eyes just prior to this outbreak. They seemed a little
concerned but did not warn me it could be cancerous.
      
Now, I suspect not many women out there know a lesion or rash
on the nipple or aureole can be breast cancer. (Mine started out
as a single red pimple on the aureole. One of the biggest problems
with Paget’s disease of the nipple is that the symptoms appear to
be harmless. It is frequently thought to be a skin inflammation
or infection, leading to unfortunate delays in detection and care.)      
                   
What are the symptoms?      
1. A persistent redness, oozing, and crusting of your nipple causing
it to itch and burn (As I stated, mine did not itch or burn much, and
had no oozing I was aware of, but it did have a crust along the outer
edge on one side.)

2. A sore on your nipple that will not heal. (Mine was on the
aureole area with a whitish thick looking area in center of nipple).

3. Usually only one nipple is effected. How is it diagnosed?
Your doctor will do a physical exam and should suggest having
a mammogram of both breasts, done immediately. Even though
the redness, oozing and crusting closely resemble dermatitis
(inflammation of the skin), your doctor should suspect cancer
if the sore is only on one breast. Your doctor should order
a biopsy of your sore to confirm what is going on.

This message should be taken seriously and passed on to
as many of your relatives and friends as possible;
it could save someone’s life.

My breast cancer has spread and metastasized to my bones
after receiving mega doses of chemotherapy, 28 treatments
of radiation and taking Tamaxofin. If this had been diagnosed
as breast cancer in the beginning, perhaps it would not have
spread…

TO ALL READERS:
This is sad as women are not aware of Paget’s disease.
If, by passing this around on the e-mail, we can make others
aware of it and its potential danger, we are helping women
everywhere.