What a First Appointment with an Oncologist Should Be Like

Despite the awkwardness because of the interpreting situation, Dr. Jewell showed me what a first appointment with an oncologist should be like.  She spent an hour with me which was much more time than the oncologists for my first and second opinion appointments.

First, she sat down very close to me.  She apologized about the center's failure to provide an effective interpreter and hoped it did not taint the beginning of a positive relationship we are going to have.  She then said she got my health history but wanted to know about me.  What do I do for a living... what general health history I have and what led me to meeting her.  She took detailed notes on her clipboard.  I looked over and there were a LOT of details in her notes and all handwritten.  She asked me questions and I answered.

She explained what endometrial cancer is and how it behaves.  She said it's a slow moving cancer.  Based on all the information she has seen so far, my cancer was caught very early. She wrote down on a blank paper and drew to describe grade 1. 

I told her I didn't have my period anymore.  She said that it's the megestrol and I probably won't get period again while taking the medication.  She explained why.  The megestrol gives my body the progesterone that it needs.  As a result, no period. 

She said that she wanted to examine me.  I was shocked by how thorough she was when she was examining me.  She took her time to feel everything and asked me if this hurts, that hurts.  I had no pain.  Dr. Diaz-Montes did not examine me like that.  The doctor issuing the second opinion did not even examine me at all. 

Dr. Jewell told me to get dressed and that we would talk more.  They typically move patients to a different room to talk.  But they decided to stay in the examination room because we had the FaceTime set up already.

After the examination, Dr. Jewell asked me what I wanted to do.  Did I want to be pregnant?  I told her that I wanted to weight all my options before I decide.  She said I could be pregnant.  The catch: I would need to stop taking megestrol when I am ready to try.  I have to have a dilation and curettage to make sure the cancer is not in the uterus before we try.  I asked about whether pregnancy hormones would accelerate the growth of cancer.  She said, "Not this cancer.  When you are pregnant, your progesterone levels are high.  High progesterone levels are good and prevents this cancer from coming back."  She said that I could take megesterol for as long as I want to and I could try for as long as I want to.  The catch, I have to be OFF megesterol when trying to get pregnant.  She said that route is not recommended.  I asked her when would be a good time to try thinking of Dr. Diaz-Montes saying I could try in May.  She said frankly, "Yesterday."  Mike asked about fertility specialists.  She said that fertility specialists would not work.  She said two options are ideal: surrogacy or adoption.  I needed to hear that frankness but it does make me sad.
 
She said that when I am ready, surgery is the best route.  She recommends removing the cervix, uterus, the fallopian tubes, and the pelvic lymph nodes.  However she said that because I caught it early enough, I should keep my ovaries.  The benefits of keeping my ovaries outweigh the risks of not keeping my ovaries.  However if I choose to get pregnant, we would have to re-evaluate whether keeping my ovaries is a viable option.  That gave me a sense of relief.  And this was the first time I felt a glimmer of hope since I found out I had cancer.  The way I see it... having the cancer shortened my life unless I did something about it.  But if I did something like going with Dr. Diaz-Montes for the full removal of everything, my life would still be shortened.  Losing ovaries means I am at a MUCH higher risk of heart disease and osteoporosis AND breast cancer.  Basically I'm screwed if I lose my ovaries.  I am tired of many people thinking ovaries are just egg stores.  I have been encountered with the attitude... what's the big deal?  Close down those egg stores.  Not so.  Women depend on the hormones that ovaries offer.  Why do you think you have never heard of men getting their balls cut off?  The support groups I am part of-- other women really encouraged me to see if I can fight to keep my ovaries.  Some women reported that their oncologists rushed them into surgery without giving them the time to research and learn the negative consequences of losing the ovaries.  I have been criticized for not being willing to be rushed into the surgery as if I was not willing to do anything about this cancer.  I am WILLING but I want to be well-informed and make the best decision that ensures the quality of my life.

BUT before I decide which route to take, she said she needed to do two more tests.  My chart was incomplete and left open for questions.  Dr. Diaz-Montes did not want to do many tests.  She just wanted to cut my reproductive system out of me.  I asked for the tests.  I had to fight to be tested for ovarian cancer too.  And I tested negative.  I didn't know there were more tests to be done.  Mike and I were impressed with Dr. Jewell.  She said that she may need to do a dilation and curettage because she wants to LOOK at the uterus to see how the cancer is behaving.  When she said that, Mike knew she was the right doctor. 

I asked her about the surgery.  She drew a picture of how the surgery would be done.  This was very helpful to me.  She discussed briefly about the surgery and what I need to know about what to do after.  She did not want to go into details yet because we need to do more tests before she can make a final recommendation.  But she willingly answered my questions about risks of the surgery with statistics for each type of risk.  She told me about two of her patients who kept their ovaries coming back with ovarian cancer.  She said it does happen and it is unexplainable but it was just two patients out of numerous she has seen over the years.  I asked if she had to remove my ovaries, would I get hormone replacement therapy.  She said, "Definitely yes until you are 50."  Dr. Diaz-Montes did not want me to get hormone replacement therapy.  Surgical menopause is no easy feat.

The final recommendation will be made when we go back up in two weeks after two more tests are done.  

New York City is not a place that I visit often. In fact, I detest crowds. New York City feels too busy for my own taste.  I purposefully avoid New York City as much as I can.  I have been only there three times before the appointment.  The first time, I went to the Macy's Thanksgiving Parade in 1997. I remember thinking that day as I fought the crowds, "I DO NOT LIKE NEW YORK CITY!"  I came back in 2002 because New York City was the only place I could take a test that was required in California. I was living in Rochester at that time.  It was a quick visit.  Third time was with my dear friend, Dan who wanted to fly from Rochester to New York City for the day.

On Thursday I realized that in order for me to have the most optimal cancer treatment, I would have to embrace New York City.  Okay, here goes.  I will be going there the next few months to get treated.  Dr. Jewell is the right oncologist for me.  She was the first oncologist that took me out of the darkness and uncertainty that I was swimming through.  She was sensitive to the distance we were traveling and asked if we wanted to go to Johns Hopkins.  We explained that it's not an option for us.  Dr. Diaz-Montes has too much influence in that area.  Traveling back and forth to New York City comes with expenses and that makes me nervous about finances.  But if it means saving my ovaries and preserving the quality of my life, it is worth the trip.  Onward.