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Jessicafk11 sent you a hug.
Hi Carmen, 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. Mayday x
Hi Carmen-- 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. Martha
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. Helen Marshall
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. Thank you, Linda
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.
Carmen, Thank you for sharing this. Next week I will be at the mid point of my treatment..and I was told to come on a full bladder but not that it will help avoid damage to nearby organs. Since my treatments last about 20/30 minutes I have been peeing before I leave home and then drink water on the way, while I dress and while I wait hoping my bladder will be "full enough" because laying thru radiation that long about to bust and in pain too (my rectum is swollen and i lay flat on my back and it puts all my body pressure on that area) seemed too much. But now I will avoid urinating before I go, I didn't realize it was that serious. I was also not told about the vaginal stenosis...luckily I did read about it and had to ask about the use of dialators. I appreciate you sharing your story...it's very helpful to us newbies to learn from others experiences.Sign in or sign up to post a comment.