Cancer Diagnosis? Where to Go Now?

You received a diagnosis of cancer.  Where to go now?  Because of our own experiences with this dreaded disease, my wife, Nancy, and I have some suggestions to share with you.

Nancy, my wife and my hero, and I will celebrate our 40th wedding anniversary this September 25.  It has only been over the last 10 years that I have come to appreciate and admire her heroic qualities brought to fruition through tremendous personal adversity.  To accomplish this it is imperative that the doctors and hospital chosen possess unique skills and procedural methods to make the cancer victim's survival possible.

Many know me as the author of the "Managing My Fibromyalgia" Website and Forum in which I describe my life dealing with the effects of what is now termed fibromyalgia, for more than 30 years.  My life has been challenging and I find myself now permanently disabled due to this chronic pain and fatigue disorder.  What I have had to face with my illness pales in comparison to what Nancy has dealt with successfully over the past 10 years.

Nancy was diagnosed with the dreaded big "C" in 1999.  It was both colon and pancreatic cancers.  She was initially devastated.  This was something she feared since 1973 when she found out she had a condition called familial polyposis.  Until that point, Nancy thought her rectal bleeding was due to hemorrhoids as her doctors had told her since she was in her teens.  She had thousands of polyps in her colon, too many to be removed.

[Familial polyposis or familial adenomatous polyposis [FAP) is a premalignant disease.  This means that a person with FAP, if left untreated, will invariably develop cancer.  Individuals with this disorder grow hundreds of polyps throughout their large intestines.  The polyps, also called adenomas, commonly develop just after puberty.  Approximately half of all FAP patients will have polyps by age 14.  Ninety percent will have detectable polyps by age 25.  Usually by age 35-40, one or more of these polyps will become cancerous.]*

[FAP is a rare disease.  One in 8,000 people in the United States have FAP.  However, it may be very common in affected families.  FAP is inherited in an autosomal dominant pattern.  This means that a person with FAP has a 50% chance of passing the condition down to each of their children.  [Our son Gregg inherited this abnormal gene and had his colon removed by the time he was 22].  FAP can also develop in someone with no family history of the disorder, due to a new genetic mutation in that individual.  It is thought that approximately one percent of all colorectal cancers in the United States can be attributed to FAP.]*

Nancy had surgery back in 1973 to remove her colon.  The doctors created what they term a "J-pouch" out of her intestine to replace her colon and to restore normal bowl function.  It was now necessary for her to be monitored for the rest of her life.  Any new polyps that developed, while in a precancerous state, required removal and testing.

This treatment worked for many years.  Since moving to Virginia, however, she became uncomfortable with the doctors she met.  Nancy became remiss on going for her checkup appointments, even after my protests that she not neglect her follow-ups.  This is what undoubtedly led to her developing colon and pancreatic cancer in 1999.

Nancy's initial reaction to her diagnosis was immediate devastation.  It lasted until she met her new doctors at the Sloan Kettering Memorial Cancer Hospital in New York City.  She saw the doctors at Sloane after getting the recommendations of family and friend based on their experience with the hospital.

After talking to the doctors and meeting other patients with the same condition, her feelings of devastation became one of hope and steadfastness in the face of cancer, an attitude she has strongly maintained until the present.

Since 1999, Nancy was treated and had surgery and several related procedures for colon, pancreatic, and lung cancer.  Through it all, she is now cancer free.

The past two years, polyps where found developing in Nancy's stomach.  They were removed, tested, and found to be showing mild dysplasia.  At the time, it was thought that they could be controlled this way, which was until the polyps became more and more numerous.

After several consultations and much consideration on Nancy's part, to prevent any cancer of her stomach developing to threaten her life, she opted for a total gastrectomy [surgical removal of the stomach and the connecting of her intestine directly to her esophagus] on Oct 7, 2008.  This radical surgery would extend her life and assure that the polyps in her stomach would not turn to cancer.  Her surgeon told us that she should expect to be in the hospital for 5 to 10 day, possibly a week, after having her surgery.

As it turned out, this was not the case.  From Oct 7, 2008 till when she returned home December 9, 2008, she spent a total of 8.5 weeks in the hospital with only a couple of short stays at her sister's home in New Jersey.  There were complications due to leaks in her new digestive tract, slow healing, abscesses filled with fluid in her torso and related infections.  In fact, Nancy returned home to Virginia with two drains still in place.

The doctors in New York City gave us the name of a surgeon in Winter Park Florida.  Dr. Timothy Childers, was going to follow up on her case.  We moved from Virginia to Chuluota Florida to live at my sister's home on December 13, 2008.  We gave up our apartment in Lorton, Virginia due to financial reasons; going to stay at my sister's home in Florida would give us extra hands to help in Nancy's recovery.

Within several days of seeing Dr. Childers for the first time and before having her drain apparatus removed, Nancy ended up once again in the hospital [Florida Hospital Orlando South] for another week.  She had developed fever and it was determined to be an on going infection from a previously undetected abscess filling with fluid.  She finally left the hospital on December 27, 2008.

It is now January 6, 2009 and we are thanking God that Nancy is making slow but steady progress [some days better with occasional set backs] in achieving some sort of normalcy.  She will never be able to eat the same way as before, but many times a day in much smaller portions and will probably need supplements to reach the goal of 2000 calories a day.

This last surgery turned out to be the hardest on Nancy that I have witnessed.  It took a toll on her emotions and determination, but I know in my heart that her steadfast resolve to live will make the difference again and she will continue to be cancer free.

Nancy's surviving cancer has come at a financial cost.  Even with her good insurance coverage from her employer, we have been financially devastated over these past 10 years.  We gave up our home in Stafford Virginia in 2005, used up my entire 401k plan from my once employer, over extended my credit on my main credit card to pay medical bills and are at a point of considering declaring bankruptcy [although it goes against everything I believe in].  We now realize we may never get to travel during our retirement as we had planned, nor have a place of our own nor live our remaining years together without tremendous financial stress and pressure.

I am not complaining though.  We look to God for comfort with thanksgiving.  Even if I knew back then, what I know now, I would, without hesitation, do it all over again and ask Nancy to be my wife.

After nearly 40 years of marriage, I love and cherish my hero wife even more than before.  I would truly be lost in this world without her.

Based on Nancy's experience with her cancer and my own experience with prostate cancer, that was treated successfully this past year, there are several things that are important if one is to successfully fight the cancer battle:

1.    Early detection through regular examinations and testing is essential.
2.    Know your risks [family history, etc].
3.    Learn everything you can about your particular cancer.
4.    Always obtain a second or third opinion.
5.    If you do not feel comfortable with a doctor, move on to another; if you do not have any confidence in your cancer doctor, find a new one.
6.    Research cancer doctors and cancer hospitals.
7.    Ask friends and professionals for their recommendations on same.
8.    When declared cancer free, do not become complacent.  Continue regular examinations and tests to detect any reoccurrence early.

*Gale Encyclopedia of Medicine, Published December 2002 by the Gale Group.  The Essay Author is Ellen S. Weber, MSN.