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    How You Can Help

    Kathy Story (2005)

    by Kathy Blankenship

    I am the “Kathy B.” who recently had a laryngectomy and was briefly quoted on page 6 of the 2004 edition of the RRP ISA brochure. About six months ago, I also accepted Michael Green's invitation to serve as one of RRP ISA’s research investigators.  I recently decided to “step out of the closet” and share my story with the entire RRP community.  I suspect that many of you will relate to it, and I hope that I may make some new friends in the telling.  

    I have another agenda in sharing this as well. We have a LOT of brochures that we want to distribute. Most people don’t know about RRP, and there are even many otolaryngologists who would welcome the chance to learn more. We believe that with a professional-looking brochure and equally professional website, we could gain some serious ground in putting RRP before the medical community and the public.  

    In order to do that, we really do need YOUR help. We’re not just talking about donations. What I’m mainly trying to do is to recruit your personal efforts to distribute brochures and get things going within your community.  

    If you want us to send RRP ISA brochures to you for distribution amongst physicians and friends whom you believe might support us, I ask that you write us. If you want to send a donation, that would be very much appreciated, but it is not required. Do tell me how many brochures you need and what your distribution plans are. As a guideline for planning your request for brochures from RRP ISA, we suggest you plan to leave about 5 brochures with each physician or office where you plan to distribute the brochure after checking with them that they’re OK with this. Please note that our full color brochures are very expensive to print. While we welcome the opportunity to send these out if they find good homes, we don’t want to do that unless you are seriously committed to placing them in physicians’ offices and recruiting support from your personal circle of acquaintances.  

    And now, on to my personal RRP story.

    My RRP converted to squamous cell carcinoma and resulted in a laryngectomy in September 2004. As I share my story and offer suggestions based on my personal experience, please think about the universal desire felt by ALL of us RRP patients to trust our physicians to make wise recommendations, use good judgment and provide the best care possible. Unfortunately, in my case you will read about several physicians whose poor judgment and incompetence caused unnecessary delays and hurled me and my family into a world of physical and emotional pain that was entirely avoidable and changed our lives forever.  Sadly, the ball was dropped not once, but many times by many physicians. Toward the end of this story, I will tell you what I learned and offer some well-meaning words of advice. 

    I began experiencing voice problems in 1994 during my second pregnancy.  My vocal cords were profusely swollen, and my voice did not return until about two weeks after my son was born.  During this time, I was put on a course of Prednisone, but that did not improve the situation. Although I was not told this at the time, I later found out that steroids such as this are usually not recommended for use with RRP since they can seriously depress the immune system.  My voice came and went over the years, but it wasn’t until the year 2000 when growths were first seen and biopsied.   

    The tissue sample from my first biopsy was mishandled (placed in water rather than a saline solution), which caused damage to the cells, and the pathology report could only say that it was suggestive of papilloma.  About 3 months later, I needed another surgery and that biopsy confirmed papilloma.  Eight months after that, on my third surgery, squamous cell carcinoma was found.  It was now 2001. 

    My doctor (we’ll call him Dr. X) recommended radiation as treatment.  My reaction was to do exactly what my doctor told me to do as quickly as possible in order to beat this disease.  I had read on this website that radiation treatment can cause non-malignant RRP to become cancerous, and I shared this information with both my doctor’s office and the cancer center as my treatment plan was being developed. They discounted my concern. I relied on their expert opinions and moved ahead with their treatment recommendation, allowing radiation to be used.  I wish that at least one person to whom I presented this information had taken the time to research the subject rather than simply encouraging me to proceed with their treatment.  In retrospect, I very much wish that I had spoken with RRP ISA about my concerns.   

    After six weeks of radiation, I was monitored regularly by Dr. X.  There was no sign of cancer or papilloma and I was led to believe that the radiation had destroyed the papilloma on my vocal cords as well.   

    Ten months after the radiation—it was now 2002—I began coughing up greenish phlegm that did not seem normal.  I mentioned this to Dr. X on 3 different checkups that I had over a 6 month period, and then he finally he ordered a chest X-ray when I mentioned I was starting to see streaks of blood in what I was coughing up.  In a patient with a history of cancer, it seems that it would have been appropriate for my doctor to have ordered that chest x-ray much sooner.  We must remember that we place our lives into the hands of our doctors (not just our voices).  My life has not been nor will ever be the same since Dr. X called to tell me—it was now 2003--that I had a 1-inch mass in the upper lobe of my right lung.  Needless to say, I did not return under his care.

    After a referral to a pulmonologist, CT scan, MRI, PET scan, and bronchoscopy procedure (which revealed papilloma in my trachea) and a consultation with a cardiothoracic surgeon (we’ll call him Dr. Y), I was scheduled for surgery for either a wedge resection or upper lobectomy, depending on the biopsy results which would be determined during surgery.  I reported for surgery early that morning and unbelievably walked out of the hospital later that day.  My family and I were in shock! 

    I had been denied treatment for a surgery that staff knew I needed in order to save my life.  I had a tumor in my lungs and they would not remove it.  I had been called in for surgery and laid outside the doors to the operating room when my family thought I had been in surgery for several hours.  During this time, members of the surgical team had expressed fears about contracting the HPV virus during my surgery, and they were meeting with the hospital epidemiologist who could not answer their questions nor alleviate their fears.  It’s too bad neither my surgeon nor the epidemiologist had the expertise to alleviate these fears amongst their staff. They could have endeavored to educate the surgical team in advance, but they did not. RRP is NOT leprosy, but I felt like I had leprosy. 

    In fact, my surgery had already been delayed a couple weeks so that the hospital could obtain special equipment to contain and evacuate any air plume that might occur with the use of a laser.  Within a few days the epidemiologist called to say that things were cleared up on their end and that my doctor would be contacting me to reschedule the surgery.  I waited several more weeks, made a number of contacts with Dr. Y’s office and others involved in my care, but heard nothing more from my doctor.  They told me that he was making an effort to obtain a sort of “space suit” that everyone on the surgical team would wear and to protect them from this “rare” virus (tens of millions of Americans have HPV, mind you) that so many of these health professionals were expressing so much fear about. Meanwhile, the cancer in my lungs continued to grow.  

    That is when I contacted RRP ISA.  Michael Green, its director, began advocating for me immediately, making phone calls on my behalf, speaking with doctors, and making arrangements for them to see me within a matter of days.  When my original cardiothoracic surgeon, Dr. Y, learned that I had found a new surgeon, he telephoned me to tell me that my new thoracic surgeon was totally oblivious to the precautions that needed to be taken during the surgery.  I contacted my new surgeon’s office and learned that they had indeed spoke with the Center for Disease Control and that there were no special precautions that needed to be taken except for the universal blood precautions that are taken with all surgeries.  I ended up having an upper lobectomy of my right lung with the diagnosis of squamous cell carcinoma.   

    I learned later that Dr. Y (the one who cancelled my surgery) had contacted the entire cardio-thoracic surgery department at my new hospital and tried to convince them to cancel my surgery. His persistence and intrusiveness suggest that he was more concerned about medical liability issues on his end than he was concerned for staff welfare at my new hospital. 

    Again, I followed up with both my new lung surgeon and my new otolaryngologist, whom I’ll call Dr. Z.  I showed them research that I had become aware of through this website, such as the Celebrex protocol, but Dr. Z had no interest in pursuing these treatment options.  He told me I was fine and put me on a 6-month examination schedule even after seeing a small but suspicious red patch on my right vocal cord in March of 2004.   

    Doesn’t it seem likely that an RRP patient with a history of vocal cord cancer AND lung cancer might need to be monitored more frequently???   Especially when their surgeon notates in the medical record that he saw something on the vocal cord that wasn’t there before and that did not look like papilloma?   

    RRP ISA emphatically suggested that with my markedly declining ability to talk, I should make an appointment to see my physician as soon as possible even though the 6-month period to return had not yet expired. I called Dr. Z in June 2004 to request an appointment due to increasing hoarseness and persistent sore throat. I was seen on July 1, 2004 and the biopsy was done July 21st, three weeks later. A pathology report wasn’t made available to the physician until about a week later.  

    Dr. Z told me that I had recurrent cancer, this time on the right vocal cord. He said I needed to schedule an appointment with him based on the possibility that the cancer was so far advanced that I would need to have a total laryngectomy with a permanent stoma, because I had previously had radiation.  He wanted to make the appointment to discuss treatment options, etc. 

    I was in shock. Once again, I contacted RRP ISA. I told Michael that I could not understand why Dr. Z. had put me on a six month monitoring protocol while the cancer was growing so rapidly that treatment required the removal of my entire voice box! Michael’s response was compassionate, supportive and professional. He also validated my sense of outrage that the cancer been allowed to advance so far without any monitoring or treatment. He was very concerned on my behalf, and I shall always be grateful for that. 

    Within 24 hours, he provided me with names of expert otolaryngologists on a national basis. The process was so horrific for me that I nearly passed out just reading descriptive information about the surgery I faced, and I actually did pass out after speaking with a doctor at MD Anderson with whom I consulted for a second opinion.  RRP ISA managed the medical advocacy elements of my entire case, speaking with physicians, maintaining a presence in the examination room, making sure questions were asked and answered, etc. Through Michael’s continuous involvement, RRP ISA provided the emotional support and information that were necessary to make very agonizing decisions, before, during, and after the surgery.

    My voice box was removed in September 2004. I now had a new head and neck surgeon (we’ll call him Dr. A).  Michael was at my bedside when I woke up from my laryngectomy. He researched options for follow up care and management of the residual papilloma in my trachea.  He even made sure the HPV-infected tissue was properly typed (not surprisingly, it turned out to be HPV 16), which almost failed to occur because the tissue was initially mishandled by pathology. 

    Currently, the papilloma in my trachea is being monitored very closely, and I have a team of doctors in New York and Seattle working together on my case.  I am also taking 400 milligrams of Celebrex daily. (Because of the cardiovascular concerns that have been raised, this was recently reduced from the original 800 milligram dosage.) To be honest, I have absolutely no idea whether Celebrex will make any difference, and I do have concerns about the cardio issue. Celebrex might be effective but we don't know, and patients/doctors should consider joining the LIJ study if they want to try it.  Only through research will we know if the risk/benefit ratio justifies use, just like with other treatments.

    Based on my personal experience, I have the following recommendations if you or someone in your family has RRP: 

    • Educate yourself – your voice and life depend on it! I suggest carefully reviewing the entire website (www.rrpwebsite.org). [As stated above, it’s being rewritten, but use the current site for now.]

    • I encourage each of us to support this organization financially, through volunteer effort and through participation on its message board. Help us get our brochure into general circulation so that patients may receive helpful and accurate information about RRP.

    • Be selective and VERY careful in choosing the otolaryngologist to treat and manage your RRP. 

    • Ask questions and make sure that they are answered to your satisfaction.

    • Don’t believe everything you hear just because the information comes from an M.D.  The title doesn’t guarantee that he or she has the answers.  This is why it is important to do your own research and obtain more than one expert medical opinion.

    • I personally encourage you to think about having your HPV typed—not just whether it is high or low risk, but specifically find out whether it is HPV 6, 11 or 16.  Some types are more prone to convert to cancer than others. You may want to monitor these more closely.  [Unfortunately, my HPV (16—which is VERY high risk) was NOT typed until my laryngectomy in September 2004, and only then because RRP ISA lobbied for this on my behalf.] That said, patients should be treated on the basis of disease, not HPV type, and there is no reason to make patients anxious if they cannot readily have it done.  A "low-risk" HPV is not always benign, and HPV 16 is not always a problem. Any patient with dysplasia needs careful watching, radiation is risky and almost never justified, and any patient with diagnosed cancer needs frequent monitoring--not the brush-off I got. 

    • There is plenty of literature recommending against irradiating RRP. Radiation is one of the few things that can actually cause RRP to convert to cancer! If you are diagnosed as having squamous cell carcinoma or carcinoma in situ, you should explore options other than radiation with your physicians. Be careful.

    • Michael suggested—and I agree—that all biopsy specimens showing anything worse than papillomatosis (i.e., carcinoma in situ and later stage cancer) should be examined by more than one pathology lab. Get second opinions!

    • Have frequent and regular monitoring.  Don’t be shy about getting more than one opinion on the monitoring frequency needed for your individual situation.

    • Obtain the opinion of more than one physician before any radical procedures. Always insist that you be treated with respect and dignity. Do not allow yourself to be patronized. Educate yourself! Educate yourself! Educate yourself!

    • Ask for and keep copies of your medical records, and do not worry about hurting your physician’s feelings by asking for them. While it takes some time to begin the process of gathering your records, it is much more convenient to have your own set of medical records, pathology reports, diagnostic imaging reports, etc. You need these records to know what is going on in your case.

    I didn’t plan on this happening to me.  None of us did.  I lived a healthy life style, and I have never smoked.  I relied on several physicians who, in the end, showed that they were unworthy of my trust.  Now my 2 children, ages 9 and 12,  have a mother who cannot talk, my livelihood as a teacher is gone and my life has been permanently altered in ways that I could not have possibly  imagined a year ago.  If and when I do learn to speak using an artificial larynx or esophageal speech, I will sound like a man or a robot (no emotional inflection to my “voice” at all), and I must deal with image issues associated with that.  My privacy and independence have been threatened, and I ride a continuous emotional roller coaster from one medical checkup to another.  I pray that no one else will have to go through what I did with this disease.  

    On the “plus” side, I’ve made some lifelong friends whom I hadn’t known before.  And while RRP can be a merciless disease, I’ve learned how good it feels to give something back to our community.  I helped design our new brochure, I’ve provided a multitude of research leads that our organization following up on, and I’ve joined RRP ISA’s board of directors.  And now, I’m stepping out of the closet, telling my story, and asking for YOUR help in distributing the brochures. My goal is to make sure that we will all have a brighter future! 

    In my own experience, I have found that most people have never heard of RRP and are astonished and shocked when they learn what it has done to me and others.  We as RRP patients have a job to do, stories to tell, a world to educate, and a common goal of supporting efforts to find a cure. 

    Thanks so much for listening to my story and allowing me to introduce myself.  

    Good health to you all and every best wish.