Hi everyone, much love and strength to all of you. I am always inspired by what I read here.
I was diagnosed with cervical adenocarcinoma, Stage 1A1, in August 2008. First cone biopsy got the tumor, second cone biopsy cleared the margins of adenocarcinoma in situ. I see my cancer surgeon every three months for pap smear, colpo and ECC (endo-cervical curretege).
Below is an entry from my blog on how I addressed the physical and emotional pain I was suffering during my follow-up visits. I am so thankful that my cancer was caught early and that I\^ve remained cancer free for the last year...so thankful that sometimes I play down how painful this whole experience has been. I took a lot for me to speak up, but I am so glad I did. I learned a lot about self-advocacy and how receptive the right doctors can be in these situations.
I just got back from regularly scheduled follow-up appointment my cancer surgeon. I see him every three months, and he does a pap smear, an ECC (endo-cervical curretege) and sometimes a coloposcopy. The ECC in particular is an excruciatingly painful procedure, so even though it lasts less than a minute, I am literally writhing in pain while its happening and close to tears.
In past appointments, I tried a variety of pain management techniques, from visualization to distraction to bringing a friend to hold my hand. I even brought a friend trained in Reiki to my last appointment. About a month ago, I decided I would look into pain management for my December appointment.
Turns out that doctors don\^t normally use a local numbing agent for any of these procedures. I didn\^t get a very good explanation as to why not; even my GYN back East who is herself a cervical cancer survivor did not know why it is not standard. The area where I am treated isn\^t equipped for any kind of IV procedure, so they recommended I see my primary care physician for some kind of sedative or pain killer.
My primary care doctor is fantastic. She did the pap smear that discovered my cancer. We had a good discussion about whether a pain killer, a sedative or a muscle relaxant would be appropriate and decided that no matter how relaxed or loopy I was, it would still hurt, so pain management was the best option. She prescribed Vicodin, which I knew from past surgeries was an effective pain deterrent for me.
I then sent a note to my surgeon addressing the pain I\^d been experiencing in past appointments and letting him know I\^d be using a painkiller this time around. I also asked if he himself could do the tests from now on, rather than one of the residents working for him (this cancer center is a teaching hospital). My surgeon is always in the room but it is often a first or second year resident who is performing these very painful tests, and sometimes I want to sit up and scream \"look, if you can\^t put a speculum in without hurting me, I am not going to let you scrape the inside of my uterus!!!!!\" But of course I\^ve never said that...until NOW.
Then, I figured since I was putting all of my issues on the table, I\^d address some of the emotionally painful elements of these appointments. There is always a discussion around when I will have a hysterectomy, the standard treatment for invasive cancer in the cervix that my surgeon has allowed me to delay until I am done having children or have decided not to have children. My surgeon asks me at every visit what my plans are, and each time I repeat that I plan to hold on to my uterus for as long as I can while I am searching for a life partner, but that I will revisit that decision if I have not found the right person by 40.
And his response each time has been to explain the risk associated with delaying a hysterectomy (I have a 95% 5 year survival rate instead of 100%), which I totally appreciate - I want this kind of candor around medical issues. But then, he\^ll say \"yeah 40, 39, maybe 38 - lets think about just cutting it out, getting rid of the whole thing by then\". Which leaves with a pit in my stomach that does not go away for days.
So I asked in this letter - which I knew would end up in my chart - that any discussion of a hysterectomy make use of the appropriate medical terminology rather than phrases like \"get rid of it\" or \"cut it out\", since we are talking about not just my uterus, but my womanhood and my hopes and dreams of becoming a mother. I also asked that unless there was a medical reason not to wait until I am 40 to decide on a hysterectomy, that there be no urging to consider at a younger age.
And guess what? He was TOTALLY receptive to all of my concerns. He apologized that I\^d had a bad experience in the past, thanked me for raising my concerns about the pain and terminology, and said from now on he was going to perform all biopsies. I felt a little discomfort during today\^s ECC, but certainly no pain, and we didn\^t even talk about a hysterectomy, only that he was thrilled with how good all my test results have been so far and that he looks forward to seeing me every three months.
Today was a watershed day for me. To have the strength and self-awareness to ask for what I need, and to have fantastic doctors who HEAR me. To be in the care of good doctors who are also good people, to know that they will incorporate my feedback into their approach to treating me. I guess I thought once I\^d made the hard initial decisions about what surgeries to have and which doctor would treat me, that I wouldn\^t have to work as hard advocating for myself. But it is a constant dialogue, with myself, with my care providers. And I feel so lucky to have learned how to navigate these waters, and to have such great doctors by my side.