Archive for November, 2011

Is Cancer Treatment Urgent?

November 15th, 2011 No comments

 In my fantasy world, once a patient is told they have cancer, things move along very quickly to give them the fastest and best possible treatment necessary to get rid of it. That is how it is in on Lifetime Movies and in novels anyway.  Once the patient has been given the alarming news of their cancer, within a week or so, every local and nationwide expert is at their service and helping them to beat the disease.


Four  weeks ago tomorrow (Oct 19, 2011), I got a call from my Gynecologist telling me I have Grade 1 endometrial cancer. I had gone for a check for some abnormal bleeding and a biopsy had been done 2 days prior to this call.  It is a call that nobody wants to get.  I didn’t flip out or faint or anything, but I was quite shocked and frightened by that call.    My personal Gyn’s recommendation was to seek robotic assisted total hysterectomy.  That means that a doctor spends his/her  time at a console with a magnified 3 dimensional image on a screen and he/she is controls the 4 arms of a Da Vinci robot, while it removes my uterus with cervix, my fallopian tubes, ovaries and some surrounding lymp nodes.  I had the presence of mind to ask how urgent it was to get my cancer taken care of.  She said certainly I would not want to wait a full year, but that I probably should get it done within a few months.


Her response to my question allowed me a little time to do some online research, consult with my Patient Safety colleagues, and make some phone calls.  My Patient Safety activism has taught me about what and who to seek out and the appropriate questions to ask.  I did my homework and made a determination that a GYN/oncologist in Portland, ME and Maine Medical center would be my choice. It is tough to decide who to trust with your major surgery.   I called my personal GYN’s office again and asked them to make the referral.  Apparently, we patients are not accepted on a self referral.  I know, because I tried.


I took  9 days to make my choice. It took 4 more days to get an appointment.  Total so far 13 days.  On November 1, I was given an appointment on November 30.  Tomorrow it is 28 days (4 weeks or 1 month) since I learned of my cancer.  November 30 will be 41days.  Then I don’t know how long after that before my surgery will be scheduled.  That “couple of months” recommendation is frittering away.  I honestly never dreamed I would have to wait for a full month to see an expert GYN/oncologist for cancer surgery.


I am a little nervous about this wait.  In fact this wait is agonizing.  I took a day to cool off before I called my carefully chosen Gyn/oncologist’s office to ask about the wait.  I spoke first with the intake people.  I was put through to the office manager, so I still have not spoken to a nurse.  The office manager was calm and kind and assured me that they “triage” all of the patients that are referred to them, and schedule accordingly.  I expressed my concern that my cancer could grow and spread and perhaps that would impact my healthcare outcome.  She then offered for me to be seen 1 week earlier by a different doctor (a male).   I decided to stay with my chosen doctor because she is a woman and because of her experience.   


A few concerns have grown since I made my choice.  My doctor is only in her office one day a week.  I’m not sure if that is because she is so busy doing surgery or other OB/GYN/oncology things.   My other worries and concerns would fill a book.  I might write about them at a later date.


I have decided to use my time before surgery to do some proactive things.  I have spoken with 2 expert GYN surgical nurses.  My list of questions for both the doctor and the Hospital has grown exponentially.  They are going to hate to see me coming, but I have a right to know these things….so does every other patient.


I am also trying to eat better …less sugar and fat.  That is a tough one for me.  I’m also trying to drink more water. 

I continue to study my condition, alternative treatment (there aren’t any), complications etc.


I am walking every day. 


I am purchasing a few things that the “Hystersisters” online recommend. The Hystersisters is an online forum of women who have had or are facing hysterectomies.   I got one of those picker upper thingys that old people use to pick up things from the floor or reach into a cupboard. Apparently, bending and reaching can be painful after hysterectomy.   I will also get an abdominal binder.  I had no idea those were still in use, but the Hystersisters swear by them.  Apparently these lightweight girdle type garments help to prevent fluid buildup in the belly after surgery.  Also, one of these sisters said that gravity is not your friend if you have a big belly….and I do….and this binder can help prevent discomfort when bending, standing etc.  


I am sewing comfy PJs.  Jonnies will just not do for me.  I need better and bigger coverage.


Soon I will pack my little dittie bag for the Hospital to include a warm afghan, socks and slippers, a personal photo of my family and dog, my journal, my cell phone and charger, and my Patient Pod, a brand new product that a co activist is promoting and I will use one to help her promote it.


So, I don’t really know if this wait will impact my prognosis, my cancer, my treatment or anything else, but since I don’t seem to have a choice and we can’t control everything, I am doing some things in preparation for my surgery, my hospital stay and my recovery.


And, I will celebrate Thanksgiving with my family.  That is very important.  Who knows what condition I will be in at Christmas?  That is one more demand I will have…I will not have surgery close to a weekend (sometimes means less staff and longer stays) or late in a day (may mean an extra night in the Hospital or a dirty operating room or instruments) or during a holiday week (less staff, less safety, sometimes longer stays).  So, I have a very huge hope/expectation that I will be the first surgical case on a Monday or Tuesday sometime prior to Christmas week.


This is what waiting is doing for me…..although it is agonizing….it allows me time to plan my safest healthcare experience.  I still hate this waiting…………………………..

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What I have learned so far on my personal Healthcare journey

November 1st, 2011 1 comment

I have learned that although I am a smartie pants patient safety activist, and I know all the correct questions to ask and who to ask, the answers are hard to come by.  The most transparent places I called were Maine Medical Center and Eastern Maine Medical Center.  The hospital I called in Boston had attitude.  I asked their infection control nurse what the infection rate was for robotic assisted hysterectomies, and all hysterectomies and I was told “well, I know they are below the National average”.   Exactly what does that mean?  I have no clue.  She also said that they are not required to report those numbers to the public, but in a year, they would be doing that.  I told her I have cancer now and I need surgery, so that report in a year would do me no good.  Then she went on to tell me she did not have the authority to give me that information.  When Iasked for someone who did have the authority, she said I would have to wait until Tuesday(this was the previous Thursday) and call back, but she was not certain I could get that information.  I did not call back.  I was completely turned off by their lack of transparency.

Both of the Maine Hospitals I called gave me the information they had on infection rates for hysterectomies, and EMMC even had it broken down for robotic assisted hysterectomies.   Both were concerned compassionate and friendly.  It might be because I know both of them from my MRSA work.  Even so, I appreciated their honesty and candor.   The only problem I had was finding out about other complications of their robotic assisted surgery cases.   I think if I had persued it further, I could have found out, but sometimes there is such a thing as TMI….too much information.  TMI can be kind of frightening.

So, although the original plan was to go to Boston and engage the doctor who did the first robotic assisted hysterectomy in New England, I have changed my mind.  That is the perogative of patients/healthcare consumers.  I did my homework.  I also asked my personal local doctor her opinion.  She was  very candid.  Her own husband died of melanoma this past June.  She basically said that given the choice of going to Boston or Portland (she and her husband went to both places), she would choose Portland.  Her comments were that the Boston teaching hospitals are world class but they love having you come there to learn ‘on’ you.   She went on to say that Maine Hosptials have the focus of Patient Safety.   This was reassuring to me.  She is a wise doctor.

So, after all my struggles and conflicts with Maine Hospitals and the Maine Hospital Association over MRSA, I will put my trust in Maine Medical Center and a GYN/oncologist there to take care of me. I am hoping that my activism has made Maine Hospitals safer places.   I have the expectation of a very safe, infection free experience.  I am scared enough about the risks of anesthesia, complications, post op pain,  recovery and beyond…..I really don’t want the added concern of preventable harm.  Eastern Maine Medical Center would have been an option if they had a GYN/oncologist, but they do not.  MMC does and that is where I will go.

I encourage all potential patients to call the hosptials they are considering and ask about their infection and complication rates.  Look the Hospitals and Doctors up on, or Why Not the Best. com websites to see their ‘grades’.  Ask around, talk to your doctor.  Ask him or her “if this was you or your mother, with exactly the same risk factors, where would you go for care?”    No question is a stupid question and all the answers (or lack of answers) are important in making your best healthcare choices.

So, my first lesson in my personal Healthcare journey  has been that although one can know the right questions, we can’t expect to get all the answers…and in some cases we can’t expect any answers at all!  But, the answers we do get and the way they are delivered can have a huge impact on your decision.