Successful Treatment for Appendix Cancer

I’ve had two recent comments from people diagnosed with appendix cancer.  It sounds like neither were being treated by a specialist.  It sounded like they were being treated as though they had colon cancer.  This treatment is not appropriate for appendix cancer.

Just receiving IV chemo only, even after bowel surgery, will not cure this cancer.  IV chemo may shrink tumors and slow their growth, but it will not rid your body of the cancer.   If you only receive chemo therapy, you will probably die of this cancer, though you may buy yourself some time.  One specialist told me 100% of the patient he knew who had only received chemotherapy had died.

This cancer spreads small cancerous tumors into the abdomen.  These tumors need to ALL be removed during a surgery called cytoreduction surgery that is done by an appendix cancer specialist, not just a surgeon who does cancer surgeries.

Chemotherapy needs to be put directly into your abdomen, a procedure called HIPEC.   The chemotherapy comes into contact with and kills any microscopic cancer cells that can’t be seen following the cytoreduction surgery.  If these microscopic cells remain, they will cause the cancer to recur.  The chemotherapy in the abdomen cannot kill cancerous tumors that can be seen by the eye, only microscopic cells.

I have information about cytoreduction surgery and HIPEC on my website.

You may receive IV chemo after the cytoreduction surgery and HIPEC, but I was told that chemo was to prevent me from having the cancer spread outside of my abdomen if any cells escaped during surgery.  I was told that that chemo would not kill tumors remaining inside my abdomen.

Treatment for appendix cancer requires treatment by an appendix cancer specialist.  Many famous hospitals and medical centers do not treat appendix cancer well.  There are not many appendix cancer specialists in the United States, so most likely you will have to travel.  There is not even a specialist in every state.

If you look at my Physicians and Facilities pages, you can find specialists who treat appendix cancer.  I traveled 1600 miles round trip 5 times to see my specialist.  But I am alive 18 years after a famous hospital in a major city told me I would die of my cancer, that I was untreatable.

Please, if you are newly diagnosed, see an appendix cancer specialist ASAP!!!  Even very good surgeons and oncologists are unfamiliar with appendix cancer, you need someone who specializes in the disease.

 

 

 

 

September 11, 2001

I didn’t remember until almost the end of the day that yesterday was the anniversary of the 2001 terrorist attack.  I don’t watch the news, so had no reminders.

The terrorist attacks kind of weave into my cancer history.  I was being treated for my cancer in New York City.  After my initial surgery and recovery, I went to NYC every 3 months for follow-up with my surgeon and oncologist.

My final appointment in New York was to be September 5th, 2001.  Just before my appointment scheduled for September 5th, my oncologist called me and told me she wouldn’t be available the 5th, that I needed to change my appointment to September 11.  I told her no, I had already booked my hotels and flights, and besides, I was having chemo on the 11th and didn’t want to miss a day.  She was unhappy with me, but said for this time and this time only we could do a phone conference.

For my first 3 month follow-up visit, since I was always there for a few days, my husband and I walked miles on the upper east side of Manhattan, supposedly the most expensive/richest zip code in the United States.  My next appointment we explored midtown, where Carnegie hall, Times Square and Central Park are located.

My September 5th appointment we spent the days exploring the southern end of Manhattan; Greenwich village, Soho, China Town…..and the Twin Towers.  I walked in front of the Twin Towers on September 6th and admired them.

I cam home on the 7th and went to my chemotherapy appointment on September 11th.  I usually spent about 4 hours in chemo.  On that day, when I walked in, all of the patients and nurses and physicians surrounded the TV, the Towers had just been hit.

We watched the coverage my whole chemo appointment, I couldn’t believe those great towers I had  seen only days before were falling to the ground.  I thought I probably passed many people on their way in and out of the Twin Towers when I walked in that part of the city.  Maybe people who might have been in excellent health and who had just gone to the health club before work in the Twin Towers.  People who jumped from the tower to avoid being burned to death.

I’d been so obsessed whether I was going to live or die, and so many lives ended unexpectedly that day.  What if I had been walking in front of the Twin Towers that day?

Three months later, I had to go back to New York again.  The depression in the city was palpable.  The concierge at the hotel I always stayed at had had a child going to school near the Towers.  There was no transportation that day so he ran many miles to the southern end of the Island to find his son, who had watched the plans hit the Twin Towers from his classroom.  He said his son could no longer sleep alone.

We walked again in southern Manhattan and saw the large black hole in the ground where the Towers had been.  The fencing was covered with quilts and photos commemorating those who had died.  There were vendors selling memorabilia and CDs with films of the events that day.  I bought a CD as a reminder.

I guess 2001 makes me remember that none of us are promised tomorrow.  I don’t believe we should live every day as our last, that is too difficult, but I try now to be thankful for every day and what it brings.