Don’t take no for an answer

First of all, I want to thank all of you who have reached out to me since by last entry.  I don’t blog to get feedback.  I blog to find release.  But, it’s a wonderful fringe benefit to hear from everyone.

Some of you have asked about the specific dates of my upcoming treatment, and I want to answer that question.  I start radiation on Wednesday, September 5th and finish up on Tuesday, September 18th.  My radiation oncologist wants to review my treatment records from six years ago when I had a broader spectrum pelvic radiation, just after I was diagnosed the first time.  If she sees that the current tumor is located outside the field of the first bout of radiation, then she’ll consider the one-time ratiation treatment that must be done in an operating room.  I don’t know the time table for that.  Additionally, I mentioned starting Tamoxifen.  That won’t happen until, at least, the next appointment I have with my gynecological oncologist in a few weeks, and I don’t know how long I might be on it. Most people have heard of Tamoxifen in relation to breast cancer, but it can be used in GYN cancers too, if, like mine, they are hormone-receptor positive.

I also wanted to mention that I knew something was wrong at least six weeks ago when I started having unexplained vaginal bleeding.  Since I’m post-menopausal and have no uterus or ovaries anymore, I knew this was not normal.  After a week or so of this bleeding, I knew I needed to call my gynecological oncologist to get it check out.  And, this is the important part, so sit up and take notice:  I was told by the scheduler that I couldn’t see my doctor until six weeks later.  I even explained that I was a stage IV endometrial cancer survivor with vaginal bleeding, but she told me, with a very snippy attitude, that I would just have to wait!

No, no, I thought.  That just won’t do.  So, I called back and asked to speak to the doctor’s medical assistant.  I had to leave a message, but she called me back within the hour, set me up for a PET scan in two days, and I was in the doctor’s office within a week after the PET.  That’s when she found the tumor and took a biopsy.  It took a week to get the results back, but she called me herself to give me the news.  In two days, I was in the radiation oncologist’s office making a treatment plan; that was two days ago.  And, now I’m scheduled to begin radiation treatment on Wednesday.  All this before I would have gotten in to see the gynecological oncologist the if I’d taken NO for an answer from her scheduler.

The message I want to leave with all of you is take charge of your health care.  Don’t let a bureaucratic policy dictate how you’re cared for.  Insist on what you need, no matter what.  Don’t let your questions go unanswered.  And, for goodness sake, do your own research, educate yourself, and keep records of every test, treatment, and office note.

I don’t wish my situation on anybody, but if you find yourself in anything like my shoes, dictate the care you deserve, because you deserve it.  Doing so might just save your life.