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A Patient Patient?

December 4th, 2011 Leave a comment Go to comments

  December 1, 2011


Not anymore.   I have worked very hard to be patient and positive cancer patient over the past month.  That is exactly how long I have had to wait to be seen by my carefully selected Gynecologist/oncologist.  I was given a diagnosis of Grade 1 endometrial cancer on October 19, 2011, by my local gynecologist.   I was seen 2 days prior to that for some intermittent scant bleeding since the first of the year. The bleeding didn’t really bother me except that I knew it was abnormal for it to continue like that and for so long.   I am post menopausal.  Robotic radical hysterectomy and lymphadenectomy was recommended for this cancer.  There is no gynecology/oncologist in my community.


When my personal gynecologist gave me my diagnosis, I asked how urgent this was.  She advised that I have the surgery within a couple of months. I made phone calls, talked with medical/nursing/surgical and patient safety experts, sought out infection rates for the hospitals I considered, and did a ton of online research.  I took 9 days to make my decision.  It took 4 days for my local doctor’s office to get my appointment for the consult, and on November 1, I was given an appointment for November 30.  On November 2, I called the new doctor’s office and asked why there was such a long wait.  They assured me it was not unusual and that was the soonest possible appointment.  I called a second time a little later in the month to see if they could put me on a cancellation list to get in sooner.  That did not happen.  At that time, an office manager told me that surgery was usually scheduled within 2 weeks of an appointment . I was also told this when I was doing my healthcare “shopping”.  She also told me that one of the office nurses would be in touch with me within a week or so.  That call didn’t come, so I called the doctor’s office again on Nov 29th, the day before my appointment, and the office nurse (patient navigator nurse…like I am a ship lost at sea) finally called me at around 3pm that day…less than one full day before my appointment.)  This was about the 3rd time I was told by personnel from that office that surgery is usually scheduled about 2 weeks out from the consult appointment. Usually is the key word here.   And, this was my first opportunity to talk to my new provider’s office about my cancer and my concerns.  I did feel lost at sea for the whole month of November.  Perhaps contact from the doctor’s nurse would have been a comforting and considerate gesture about a week or two into my wait for my appointment.  I don’t think that I am the only cancer patient that ever suffered a great deal of anxiety of my new cancer diagnosis and the need for major surgery. Patient centered care should be all about the patient, and allaying their anxieties.


I was hanging on, being patient and thinking that a surgical date two weeks after my appointment wouldn’t  be too bad.   But, I was still very anxious and stressed over that wait, and at one point, I had even asked my local doctor’s office to call on my behalf to see if I could get in for an appointment sooner….no luck on that either. She refused to make that call because she “has no control over the other office’s practices”.  ‘Thanks a heap’ I thought.    


It has been 6 weeks since my diagnosis and today I was given a date for surgery by my carefully chosen specialist…January 6, 2011……….another 5 weeks and one day from today.  My wait for surgery has essentially doubled.  This is absolutely outrageous and I am livid!   I am definitely questioning my choice of practices.  If I had chosen the practice I was considering in Boston, my surgery would be completed by now, and I would be recovering.  I hate making mistakes….and I hate waiting with around with cancer inside me even more.   Both of my doctors have assured me that the cancer I have is the “best” cancer I could get.  Why is that so hard to swallow?  Because NO CANCER IS A BEST CANCER!!  WHEN A PATIENT RECEIVES THE DIAGNOSIS OF CANCER OF ANYTHING, THEIR  FIRST AND BIGGEST PRIORITY IS TO GET RID OF IT AS SOON AS POSSIBLE!


When I was carefully shopping for my new doctor, their patient representatives (people who answer the phone) said they generally schedule surgery within 2 weeks of a consult. I was told the same thing during several subsequent telephone conversations with that office.   I was mislead and misinformed .  I planned my life around that information and fully expected to have my surgery completed in advance of the upcoming holidays and to be recovering over the holiday. What a great Christmas present that would be…to have my surgery over with, my cancer removed and my recovery progressing.   Apparently, the office staff was unaware of the following reasons that could delay a surgical date.


  1. It is the Holidays and the doctors have families and will be taking time off. (I fully expected to NOT interrupt anyone else’s Holiday because I thought my surgery would be well over with and I would be spending my own holiday recovering.)  When I was told this, it was the only time I was snarky and nasty to the doctors staff.  I responded with “I am sorry my cancer came at an inconvenient time.”
  2. Some other people need to have surgery before the end of the year because if they wait until 2012, they would have to meet another insurance deductible.  (I wonder if those other patients have a new cancer diagnosis, and if so, I certainly would not want to displace them in the doctors schedule, but if not…….this simply is not reason enough to postpone or delay MY surgery and the possible cure of my cancer)
  3. The doctors only have certain blocks of time to do these robotic surgeries in the operating room where they practice and scheduling is tight.  (If this is happening, then the Hospital needs more surgical space or more robots and/or they need to get more qualified GYN/oncologists in this practice.)  This should not be my problem.  My cancer is my problem.


Wow, these are some pretty crazy reasons to make me…a newly diagnosed cancer patient, wait another full 5 weeks for surgery.  I have always proclaimed, I don’t want special treatment, I just want efficient, safe and timely care. This is an expectation that every patient should have.    This whole experience makes me really sympathetic toward poorly prepared, uninformed, intimidated, frightened and passive patients.  How must they be treated when a big mouth with great health insurance, like me, is facing all of these hurdles.   Every patient needs a course on Patient empowerment.


I really liked my new Gyn/oncologist.  She was very patient with my concerns and questions and she spent a great deal of time with me.  I am pretty sure I went over my allotted/scheduled time and into someone else’s time.  My biggest concern is that she did not seem to be aware that MRSA colonization is a real and big threat to pre operative patients and it is important to be screened far enough in advance of surgery to allow for decolonization and a possible change of preop antibiotics.   My request for MRSA screening kind of threw her off, but she was willing to put me in touch with the Hospital epidemiologist.  I am waiting for him to call me.   The other concern was that she told me that my cancer is slow growing and it is not a risk to wait.   I don’t believe she can know that for sure until she has my female organs and lymph nodes in her hands and they are examined under a microscope by her and a pathologist.  She has no way of knowing how deep my cancer has grown  into my endometrium or uterine wall or if other organs or surrounding tissues are affected by it.   I know this because I have researched my diagnosis and my surgery constantly since the day I got my diagnosis.  I know doctor said these things to comfort me and to allay my fears, but I am afraid…and I’m afraid that it didn’t’ do any good. By the way, my tissue sample had not been sent to this practice before my consult, so the new second tissue exam/biopsy had not been completed. She told me that was a problem within her office for not requesting it and she would look into it.


My new office is setting up pre operative testing in Bangor so I don’t have to travel to Portland for a pre op visit. So that is nice.  I asked that they send me the surgeon’s consent form so I can preview it before signing on my surgical date (whenever that might be).  Hmmmm, she said, nobody has ever asked for that before, and she would have to check on it.  I told her I would actually like to read it before I am in the pre op area under a great deal of stress or under medication.


Just a few more crazy things that have happened recently during my healthcare journey…. I was nearly given the CT scan copy disc of another patient by my local medical center imaging department.  The alertness of the lady in the office saved me from receiving someone else’s CT scan on a disc and saved that other patient from a HIPPA (medical information privacy) violation.  The person I spoke with earlier,to get this disc, did not verify my birth date. This is an example of how important patient identification information validation is. Also, the copy of my medical records from my regular doctor did not have any lab, xray or other diagnostics from 2010 or 2011.  I thought those things might be important so I went back to get them.  My new doctor didn’t ask for my records.  And, (this is actually kind of funny if I wasn’t so angry) Yesterday, after Mike and I were put into a conference room to meet with the doctor ,prior to my exam, there were 3 fire alarms, one after another.  We were forewarned that they were testing the fire alarm system that morning.  During the first alarm we stayed in the room.  During the second and third we had to evacuate.  The doctor had started our consult, but when the second alarm went off, she had gone to answer a phone call.  During the third alarm, we were in the middle of the consult.   This was just too many interruptions during a single consult…..Chaos aplenty….


Summary.  I was given a diagnosis of endometrial cancer Oct 19.  I had a few minute conversation with my personal GYN doctor about it on Oct . 20, while I sat in a pool of blood and pus from an abscess I&D (incision and drainage) that I’d just endured. Jeesh, so much of women’s care is still barbaric and messy.   Then I was hung out to dry for a full month…with my questions and concerns. My consult appointment wasn’t until November 30, over a month after the referral was made.    I fully expected to be recovering from my surgery over the Christmas holiday because that is what I was told several times by my new doctor’s office.  Now I am hung out to dry again until January 6.  But, they “ are working on it” to see if they can make it happen earlier.




November 2, 2011


I spent a sleepless night, suffering with heartburn and anxiety.  After I pulled myself together in the morning, I started making phone calls.  Passively waiting for a “better  surgical date” for surgery is not an option.  I needed to take action for myself.  I called 2 more Hospitals in Boston to see if they could send me a rescue boat.  One was encouraging and will call on Monday.  I also called my doctors practice administrator.  Her name and number were given to me by the woman who called with my surgical date.  She was very nice, asked a ton of questions and sympathized with my concerns.  She is also looking into getting an earlier date.  Then I called the assistant Chief Medical Officer of Maine Medical Center who is in charge of Patient Safety and HAI prevention, Patient satisfaction and improved quality of care.  I worked with this gentleman and scholar when I was on the Maine Quality Forum committee for MRSA prevention.  He is a serious and compassionate doctor and I was very glad to receive his return phone call.  If anyone can help me, he can.  It is good to know effective and smart healthcare leaders like him.  It’s too bad every patient did not have the same privilege.   My new doctor had already emailed him about my requests for pre operative MRSA screening and possible decolonization and pre op prevention of MRSA.   His call gave me a lot of encouragement.


I’m beginning to wonder if I might be the most challenging patient they have had in quite some time.  I hope so, because the things I teach them by being empowered (difficult and demanding may be the words they are using) may have a positive impact on other patients.  My actions might improve my healthcare experience, and it might help others as well.  My ears are burning. That must mean that many people in Southern Maine Healthcare systems are talking about me.


I am not a patient patient anymore.  I am a stressed and frustrated patient, but I am also in full battle mode for my best healthcare experience.    I do worry that this wait and the stress will affect my prognosis.

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  1. Bill Wright
    December 4th, 2011 at 12:13 | #1

    I’ve been fighting your fight for many years as a patient advocate. Please be a little more patient and find a doc and hospital you can trust and gain confidence in. Try something, OK? Design your final decision strategy in the following fashion. 1. Research and learn as much as you can about them. 2. Allow your decision to be guided by one criterion: If the facts you discover enhance your positive impression, keep going. If you discover any major negative facts, abandon your choice. The best impression should guide your final decision.

  2. Kathy
    December 6th, 2011 at 15:31 | #2

    Thanks Bill for your advice. I did do a great deal of research and calling around before I made my choice. I chose this practice because it is closer to home than Boston, has a good reputation and the Hospital was transparent about their infection rates. Even with all of that, I am being made to endur this delay in treatment and cure and it is terrible stressful. I so have some things cooking and perhaps they can move my surgery up by a few weeks. I did like the doctor , and that is very important.

    So, because changing course right now, which would be mid stream, would delay my cure even longer, I am staying with this choice. Right no I am not particularly happy with it, but there is still opportunity for them to do better by me…and perhaps they will.

    Take care Bill.

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