Okay, so I seldom post at all. But I do want you to know that I read daily and you have been a wonderful source of knowledge and hope! Thank you! I am sending this letter to my radiation oncologist, my medical oncologist, my surgeon, my disability lawyer and anyone else I think ill “get it”! I thought I would share it with you too!
On January 22, 2010 I was diagnosed with anal squamous cell carcinoma via biopsy of the anal canal by surgeon Michael Kia. Dr. Kia told me afterward that he had been certain that it was cancer upon the DRE (digital rectal examination) he had performed in his office on January 21, 2010. My visit to Dr. Kia came after more than a year of misdiagnosis and erroneous treatments from various physicians. I had been seen for IBS (irritable bowel syndrome), Bartholin’s cyst, diverticulitis, internal hemmorhoids, anal fissure and Crohn’s disease. After undergoing a painful colonoscopy which revealed no polyps, a gastroenterologist began to treat me for internal hemmorhoids with a series of three IRT treatments which involved an infrared laser. The first treatment was so painful and bloody that I prevented the second one before it began, which lead the gastroenterologist to suspect an anal fissure. After an anoscope, a CT scan that also found cysts on both ovaries, and the surgical placement of a Medport in my chest, it was discovered that I had a Stage IIIB tumor with lymph node involvement locally. I was not informed of this staging by any of my oncology team, and six months after my treatments ended I was informed by my surgeon Dr. Kia exactly how large my tumor had been. I underwent two courses of chemotherapy in concurrence with my radiation treatments, which consisted of Mitomycin and a five day infusion of 5-FU via a fanny pack connected to my Medport. I received six weeks of IMRT radiation five days a week. Four months after treatments ended I underwent a surgical procedure and venogram to locate and resolve a blockage in my Medport line. On August 4, 2010 I had another CT scan and on August 6, 2010 another biopsy of the anal canal was performed by Dr. Kia at McLaren. On August 26, 2010 Dr. Kia informed me that there was no evidence of disease (NED). All six-month follow-ups to medical oncologist, radiation oncologist and surgeon have been negative for cancer since.
Before treatment I had been briefly consulted about side effects – including nausea from chemo, possible hair loss or thinning and radiation burns. I was not informed of the many long-term side effects of which I continue to suffer. There are only 5,000 new cases of anal cancer yearly, which makes it relatively rare and little is known of post treatment quality of life and ongoing physical and psychosocial effects. I was not informed that having a full bladder before radiation treatments would help lessen the effects on nearby organs. I was not informed that pelvic radiation would throw a female into menopause, nor was I informed of the thinning and shortening (stenosis) of the anal and vaginal canals and the urethra which would make having an annual PAP exam very difficult and resuming sexual activity virtually impossible. When persuing the normally recommended use of graduated sized dilators with a radiation oncologist and why they were never offered to me, he seemed very surprised I should even bring it up and informed me that they only gave those to cervical cancer patients. The entire oncology team seemed completely oblivious to the idea that an anal cancer patient would try to persue any sort of sexual relationship after treatment. No one in my team ever mentioned the ongoing, disruptive and debilitating effects of frequent and unexpected diarrhea that is the most common long-term effect among anal cancer survivors. Two years out of treatment I still have days that I cannot leave the house for fear of accidents. I continue to have pain and bleeding in the bathroom the majority of the time, followed by fatigue and anxiety. It is still painful to sit for lengths of time and now there is stiffness and soreness in the hips and pelvic region and edema in the legs. No one on my oncology team mentioned anything about bone density loss or the shrinking of he bladder and urethra causing frequent urgent urination and increased suceptibility to UTIs. Again, very little attention or study has been given to the long-term side effects of anal cancer treatment and its limitations on the survivor’s quality of life.
The link between HPV (human papilloma virus) and certain cancers such as cervical and anal has just begun being recognized and studied. I am not unusual among my fellow anal cancer survivors when I state that I have never been diagnosed with HPV, have never presented with the vaginal or rectal warts that commonly appear with HPV, have not had anal sex, have never had any STDs, have not been promiscuous and have never had any major medical problems aside from endometriosis which resolved itself many years ago. If approximately 50% of the sexually active population can be found to have some evidence of HPV, why are there only 5,000 cases of anal cancer a year that have presumably progressed to cancer from the presence of HPV? Why, in this day and age, is there still the presumption – even in the medical community – that the patient must have been having a lot of risky anal sex? I realize that until there are many more studies done and some of these attitudes change, there are few answers to these questions. No one knows.
Meanwhile, while I am of course grateful to my medical team, in particular Dr. Michael Kia for the final proper diagnosis, for me being alive today, I continue to live a very limited and socially nonexistant life. I am not the only one.
It’s good to see you posting but I am sorry to hear that are stll having such horrid ongoing side effects. I am 10 months post treatment now and still have problems with my bowels plus soreness around both the front and back passages but it doesn’t sound nearly as bad as you are suffering. I can’t face the thought of having sex – my consultant, to her credit, has asked me about it but for me I just don’t want to be touched down there at all – I don’t know if it would be a problem physically or not. I asked for the dilators during treatment because of the advice I had seen here on BFAC and other sites – they also told me that they usually reserve them for people having radiotherapy to the cervical area but my consultant stepped in and said, no I should have them because the radiation zone was so wide (I also had stage 3B with 2 sets of lymph node involvement). I guess it depends a lot on the consultant/doctor you have – I think mine was fantastic. Some of my side effects I have been told are unique to me – my consultant has said to me on many occasions that they don’t really know what damage the radiotherapy can cause or what is going on inside. Great eh? But I guess it’s better then having cancer.
Congratulations on continuin to be NED - sounds like you are out of the woods on that count. I hope your letter is effective in raising awareness of this disease and the effects of treatment.
Amen! You have expressed many of the feelings of disappointment and anger that I’ve had because of the ignorance of some people in the medical profession. My internist at the time I began experiencing the bleeding did a simple DRE and without hesitation told me I had a bleeding hemorrhoid. Had I not pursued it further, God only knows how large my tumor would have grown before being found. People are in the dark about anal cancer. Doctors don’t know it when they see it, patients are oftentimes not informed about possible temporary or permanent side effects of treatment, and even the most intelligent people assume that anyone diagnosed with the disease has engaged in sexual activity that is risky or not the “norm.” I consider myself very fortunate in that, other than my internist who misdiagnosed me, my doctors have all been wonderful. I have never been made to feel ashamed or embarassed by any of them. How I wish all those who are stricken with this disease could have the same caring team that I’ve had.
I am so sorry to hear that you continue to deal with all of these post-treatment issues. I applaud you for letting your doctors know that, while the treatment they rendered may have saved your life, your quality of life is diminished now. They need to know that this is not a walk in the park and that things that most people take for granted are sometimes lost to those who have endured this grueling treatment. I hope your letter will get their attention.
Thanks Martha and I wanted to thank you once again for always being a comforting and helpful person here and other sites! Love ya, girl!
Love you back, Carmen!
Hello Carmen. I thank you for this post. One of the reasons that I created my website about anal cancer (see the link on my profile page) was exactly this, the complete failure of the oncology center to provide information on the consequences of pelvic radiation beyond a boilerplate consent form that seemed to suggest almost anything could happen. And absolutely no information about mitigation of these effects. It borders on the criminaly negligent. You inspire me to send something similar to my own radiation doctor (who told a fellow patient, flatly, that anal cancer was the result of anal sex. In the presence of her (adult) son).
A giant hug.
It is incidents like that that spurred me to write some things down Helen! I hope what you write will get some attention as well :)
Thank you Carmen, and I hope that you get some response to your letter to the doctors. Maybe we should do a group letter…
Hi Carmen, What a well written, well thought out letter. If it were a petition, I would sign my name to it! I think every radiation oncologist should be given this letter. I am appalled at the lack of information that is given to women regarding pelvic radiation. It doesn’t matter if your cancer is cervical or anal; if it is in the pelvic region they should tell women what will happen. I have seen that nurses and doctors in the same practice don’t tell the same thing to different patients. It is very frustrating. I commend you for writing this and hope it opens some eyes. Glad you are NED! Cherie
Excellent letter. If it opens one eye in the medical field you have done a great service.
Carmen, please let us know what reaction there might be, if any, to your letter!
Will do sweetie! Nothing so far, but that doesn’t surprise me. The rad oncologists don’t want to admit any effects are from what they do and across the hall, the medical oncologists won’t admit any of it is theirs either LOL!
Dear Carmen, I hope that you are well and feeling even better. Would love to hear from you!
Hi Carmen, I just stumbled upon your post and would sign your letter in a heartbeat. Just noticed we started treatment the same day. Hope you post soon – would love to hear how you’re doing.