Saturday, March 14, 2015

Why New York City!!?!!

We went back to New York City on Wednesday night for the pelvic ultrasound and follow-up meeting with Dr. Jewell on Thursday.  The commute is exhausting.  The train is much faster and more expensive than the bus (about 2 hours 50 minutes each way).  We took the Megabus because it's cheaper.  BUT we were not comfortable.  The seats were awful.  It was a long 4.5-hour+ trip each way.  Plug outlets did not work.  Wi-Fi did not work.  But the trip is worthwhile because I have a wonderful oncologist.  The bus ride made us realize that the Megabus is not an option for post-op appointments since I will be in pain.  Comfort is very important at that time.  So we'll be doing Amtrak for both post-op appointments.  My credit card company is really happy right now.  Like I said in an earlier post, cancer is expensive.

Why New York City?  I have some friends who think that going up to New York City is not necessary and that I should go with a local oncologist.  People are entitled to their own opinions.  Nevertheless, I need to feel supported in my decision.  It sucks to know that I don't have that support from specific friends when they comment about how I should have the surgery locally and that the commute is a pain.  We know the commute sucks and time-consuming but it's all worthwhile for the right doctor and the care.  Memorial Sloan-Kettering Cancer Center (MSKCC) was described in one of my readings online as: "one of the most prestigious and advanced cancer research institutions in the entire world."

Back in 2002, I had a bad case of plantar fasciitis that I was not able to walk well.  My podiatrist said that we have reached the last resort - surgery.  Because that was what the insurance in United States would pay for.  Having the surgery would mean decreased mobility.  That was not acceptable for me because I am active.  I asked him if there were other options.  He said to me, "This is off the record but go to Canada.  They have this non-invasive treatment that really works."  Before that time, I used to wonder why people would travel great distances for medical treatments.  After this experience, I understood and supported traveling for optimal medical treatments.  I got my treatment in Canada and I am happy to say I can walk and work out without any pain or limping.  It was the best decision I made.  I knew after that experience that if I had to travel again for optimal medical care, I would.

We are part of a Facebook group for women with endometrial cancer.  I think Mike's the only male member that makes occasional comments! Go, Mike! :-)  A woman is moving from United Kingdom to Manhattan in a few weeks.  She noticed that I am getting care in NYC so she asked for a recommendation.  I recommended Dr. Jewell.  Mike made a follow-up comment.  I am copying and pasting his comment which was a great description of Dr. Jewell: "Dr. Jewell is kind, considerate, caring, extremely DETAILED and BRUTALLY HONEST. Easily the best decision that Naomi and I ever made during this process. We have walked out of her offices feeling more informed each time."

In my ongoing research about endometrial cancer, I came across information about how uterine/ endometrial cancer treatment is most deficient in many parts of United States.  The reason for this is probably due to lack of training of gynecologists to detect this type of cancer and lack of research and funding for uterine cancer.  MSKCC in 2013 published a groundbreaking study that from molecular standpoint, breast, ovarian and uterine cancers are all identical.  After this study, MSKCC went on record that same level of testing, treatment, and surveillance used for breast and ovarian cancers be used for uterine cancers. 

I remember reading on MD Anderson Cancer Center's website that they routinely tests women with uterine cancers for CA-125 (tumor markers of ovarian cancer).  Dr. Diaz-Montes did not include this test.  I had to ASK for it.  I learn from one of my support groups that they had to fight for this CHEAP blood test.  Dr. Jewell said that it was a good thing I got that test.  Dr. Diaz-Montes just wanted to jump to surgery and do no tests.  I insisted on tests.  She willingly did the hormone receptor test and the CT scan.  I asked for CA-125 test.  Dr. Jewell was not content with the information in my records.  She wanted to see the pathology slides and the CD images herself.  Plus, she wanted to do genetics test and pelvic ultrasound to get the full picture about my cancer.  

When Dr. Jewell was talking with us last Thursday, she noticed I was feeling emotional about the whole thing, she ASKED about that.  I explained my feelings.  She took the time to listen and try to connect with me by comforting me.  She sat with us for over an hour to discuss treatment options, plan of action, preparing for possible adjuvant therapy, follow-up care, and any questions we had.  She shared the latest research on lymph nodes and cancer.  This means the center uses an innovative way to detect cancer in lymph nodes and determine the ones to remove during surgery rather than removing them all at once.  She described how follow-up care once I am deemed cancer-free would involve tests that are not recommended by American Board of Obstetricians-Gynecologists.  She said that the center noticed that cancer do come back in some cases which makes those tests necessary as preventive care for life.  I left the appointment last Thursday knowing I trusted Dr. Jewell with my life.  I could not trust Dr. Diaz-Montes to do anything to me while I am under anesthesia.  Mike commented to me yesterday that he always felt Dr. Diaz-Montes was in a hurry to go which left us swimming in darkness and uncertainty with numerous unanswered questions.  I do not feel that way with Dr. Jewell.  She explains everything in great detail. 

Trust is key.  A relationship with your oncologist is key.  If it means traveling far away, so be it.  Look for a doctor with exemplary bedside manners.  Dr. Jewell is repeatedly recognized for her bedside manners.  Dr. Jewell was my third opinion.  I often like to say, "The third time is a lucky charm."  Dr. Jewell is my lucky charm.

1 comment:

  1. Sounds like Dr. Jewell is WELL worth your research and perseverance in obtaining someone you can trust and feel comfortable with. That is a big part of your recovery process.

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