Seems like women in early 40's need to be getting colonoscopies

GracieBradley

I am a 46 yr. old female in Ohio, diagnosed in October of 2003. I went through the research arm of treatment in a clinical trial. My treatment consisted of no surgery (other than the massive biopsy) and 4 rounds of chemo (4 day pump with FU5) and Cisplatin. After two rounds of chemo, the radiation began. 37 total treatments. My tumor was about 7 cm by 3 cm by 3 cm. I do not know the proper terms as many of you do, I only know I was told it was stage 4-5 but without metastasis. I am one year totally clear and am doing 6 month colonoscopies and annual CATscans. We don't even need to discuss the embarrassment issues we had initially, only to learn to shock and awe everyone who asks about what type of cancer I am dealing with with total honesty. The treatment was rough, admittedly, 2nd-3rd degree burns inside and out yet I never missed a single treatment. God was kind in that the pain was dealt with by the fatigue and chemo brain. I think denial played a big part as well. Within 2 weeks of completed treatment I was able to bounce up and down on padded chairs without pain! What a joy that was. My burns healed quickly and Neosporon (sp) was what kept me from losing my mind from the itching. I also was allergic to the silver sulpha cream. One would think that they could test us first! The blisters from the allergy over the burns were just insult to injury. I am curious about the rest of you and the "chemo moments" that I am experiencing. This has been 1 1/2 years and I am really having a rough time with them. The hot flashes and night sweats are almost gone and menopause was instantaneous. My doctors never gave me a dialator, so the lesions completely closed up the entire vagina. I have had one corrective surgery and the lesions returned. Has anyone any idea how long this will be an issue? I flew through everything up to this point with flying colors, great attitude, lots of prayer and a great sense of humor. Now I am in the anger stage finally and am having a very difficult time getting past what has happened to me. The chemobrain and scarring has taken away most of my confidence. I am wondering how others of you have coped to get through this. I write myself notes and then forget to look at the notes! The frustration level is getting ridiculous. Any thoughts or suggestions will be appreciated.

desertdreamer

I am a 43 year old woman and was diagnosed 8/03 with anal cancer. Your story of the radiation and chemo was so familiar. I am sorry you also went through that. I take hormones for the menopause side-effects. I have a dilator but do not use it. I think I might start after hearing you story. I have had many more chemo treatments and also surgery because my cancer has metastacised to my liver. I identify with you about the intense embarrasement you initially felt with the diagnosis and the embarrasing treatments, but I also am very honest in telling people I have anal cancer. People need to know that this is not as rare as the doctors say. There are allot of us! And we need to get the word out and get more research done on this cancer. Anyway, please check out the hormone replacement therapy. I am willing to bet that allot of your symptons that you attribute to chemo brain is actually due to the instant menopause. My symptoms of severe anxiety, inability to sleep, inability to absorb and remember information, horrible mood swings and crying, and discusting night sweats all disappeared when I started the hormones. Good luck,

Charlees

Hi, I can relate. Im a 47 yr. old female from Portland OR. Been cancer free for three years in March. I am so frustrated with all that is still going on. In a constant state of bleeding and raw skin. Scared to even attempt to be in a relationship as I have know idea what is going on down there. I have searched for help, but regular gyn's. don't have a clue. I was told estrogen cream will help build the skin in the cervix. As it is so thin and in a total state of atrophy.(spelling?) It is very hard finding an understanding mate with all the problems. I was always a vibrant person but all of this has taken a toll. I hope you are doing better as your message is from Sept. I was also told Natural med might be the way, but most insurance won't cover the visits. So here we are. Thank you for your story. Debbie

Andy5

Charlees said:

Hi, I can relate. Im a 47 yr. old female from Portland OR. Been cancer free for three years in March. I am so frustrated with all that is still going on. In a constant state of bleeding and raw skin. Scared to even attempt to be in a relationship as I have know idea what is going on down there. I have searched for help, but regular gyn's. don't have a clue. I was told estrogen cream will help build the skin in the cervix. As it is so thin and in a total state of atrophy.(spelling?) It is very hard finding an understanding mate with all the problems. I was always a vibrant person but all of this has taken a toll. I hope you are doing better as your message is from Sept. I was also told Natural med might be the way, but most insurance won't cover the visits. So here we are. Thank you for your story. Debbie

There is a great Yahoo site with people just like you surviving anal cancer who also have mets, and/or hpv or hiv look into yahoo.com under the section GROUPS then type in anal_cancer (that's anal with an underline then cancer). 300 members for this 6 year old list serve and about 500 postings on the average month. I'm almost a 4 year survivor of anal cancer as of 2006

cookieturtles

I was diagnosed with anal cancer at 47 in 2004 and it has been almost 2 years since i stopped all treatments, like most had the fanny pack with 5-fu and high doses of cisplatin. I had chemo once a month for 6 months, but was on very high doses, was staged at 3/4. Tumor dissolved and never had surgery. I had 7 weeks of radiation and it burned my vaginal walls really bad. Also had 2nd & 3rd degree burns, mostly inside the vagina. I now battle all the side effects every day, neuropathy, balance issues,nausea, runs,noises in my head. I lost the ability to drive a car. Menopause came on quickly. I was given a dialator after I finished with treatment and I don't use it, it's already closed up, why bother. The only way I get through it all, is by making jokes about it, makes it easier and I can laugh. Jokes about my cancer. I've read alot of info on HPV and anal cancer, just trying to make it one day at a time. 6 months for scopes, huh? I get them every 3 months. My biggest problem is the runs, the other stuff is easy, I would like the runs to stop!!! All I do is keep a postive look at it and keep telling myself, I'm in remission, can't get any worse. I think the cancer was easy, it's the side effects that are hard. I write in a journal everyday and that helps with the negative feelings, just keep your head up and look forward, be positive and humor is the best medicine. Good Luck!!!!!

rien

Charlees said:

Hi, I can relate. Im a 47 yr. old female from Portland OR. Been cancer free for three years in March. I am so frustrated with all that is still going on. In a constant state of bleeding and raw skin. Scared to even attempt to be in a relationship as I have know idea what is going on down there. I have searched for help, but regular gyn's. don't have a clue. I was told estrogen cream will help build the skin in the cervix. As it is so thin and in a total state of atrophy.(spelling?) It is very hard finding an understanding mate with all the problems. I was always a vibrant person but all of this has taken a toll. I hope you are doing better as your message is from Sept. I was also told Natural med might be the way, but most insurance won't cover the visits. So here we are. Thank you for your story. Debbie

i have just read your message from a year ago. i feel like ive been going thru this alone for five years. i can relate to so much of what you said. i am new to the internet so i dont know what will happen with this message, but i have wanted other people who have gone thru the same thing i did to talk with. i am 59 now, finished treatment five years ago, since have had two bladder cancers probably due to radiation damage. i also wonder if my life as a sexual being is over. hope this gets to wherever its supposed to go