I know we've all talked about this before

mp327 said:

I agree!
There is so much more that needs to be learned about this cancer, starting with the doctors! I am so sick of hearing about new people coming on the forums who were misdiagnosed, some of them for long periods of time. Some doctors seem to be ignorant of the fact that this disease even exists! My internist was so sure I had bleeding hemorrhoids--I can still hear her say "there it is!" as she was doing my rectal exam, then telling me it's "just a hemorrhoid and I'm writing you a prescription for some proctofoam." I'll never forget when she called me a few weeks later as I was lying in bed recovering from my port surgery earlier that day. She had just found out that I was diagnosed with CANCER!, not a hemorrhoid. I was too wiped out from the anesthesia to tell her how stupid she was. Needless to say, she's no longer my doctor.

I hear you Martha! -- my
I hear you Martha! -- my doctor, when he found out I had cancer after the hemi surgery was shocked. I really think that most GP's and even general surgeons (both of them misdiagnosed me until after the surgery) either do not know what they are feeling in there or assume if a colonoscopy is done everything is okay (both of mine asked when the colonoscopy was that I had last and I said two years). With that they just figured okay, it's a hemi. Yah, right. I have not gone back to my GP since but he asks my sons and husband if I am okay and how am I feeling. My husband thinks since this happened, he's more diligent about everything now. Doesn't do me any good. I'm not even sure I want to go back to him, even though he's been on spot with everything else. Do I blame him for being ignorant about anal cancer? I don't know. Don't know how I feel about it but I have the feeling if I ever do see him again I'm going to tell him to make sure everyone in his practice is aware that this cancer exists, rare or not. On another note, my first 3 month scans are in two weeks and I'm starting to feel the building up of stress, anxiety and depression. At first I thought I was just overly tired but I think it's the anticipatory anxiety. Every little thing is annoying me or I burst into tears for the dumbest things. My friend Laine who had lung cancer just finished her 6 month scan and is NED so we had a celebration via email. Always good to hear such good news. She said she will relax now for a few months and then the anxiety and such starts again. This truly is a roller coaster ride!

mp327 said:

Marilyne--
I know the stress that you are feeling right now with your scans coming up. It's really an anxious time and I never deal with that too well, so I won't attempt to give you advice. Just know that lots of us are thinking about you and keeping you in our prayers.

As for my old internist, I decided I was not going back to her as soon as I found out I had cancer. I know doctors make mistakes and she had tried to get me to get that first colonoscopy a couple of years before my diagnosis. I was just too stubborn. My fault. However, what really made me upset with her was that I went to her for rectal bleeding in June 08 and her only reason for insisting I get a colonoscopy at that time was because I hadn't had one yet--not because of the bleeding. She was pretty nonchalant about it because she was so sure I had a hemorrhoid that she did not stress getting the colonoscopy because of the bleeding. I think this is where so many doctors fall short--they are assuming that their diagnosis is correct and don't refer the patient to a specialist for confirmation by a more thorough exam. I have often thought of writing her a letter and telling her that my experience happens all the time and people are getting misdiagnosed way too often. Also, doctors need to know that colonoscopies are NOT the best exams for finding anal cancer--another misconception.

You should write your doctor Martha....
It may save someones life! And even thou she may never see anyone else with anal cancer it is on the rise so she will keep a look out!

To others here who worry about recurrence there are some interesting websights that give insight on how to "stop making cancer". Websights such as stopmakingcancer.com, Phmiracleliving.com, cancerangel.com.

These concepts give a sense of control and hope. while going thru treatment or to prevent.

sephie said:

understandable
hey, my heart goes out to you and to us all because any pain or blood makes us so afraid. the bright red color is good. go to your doc. hugs to you sephie

I was so fortunate
My GP saved my life. I called his office and asked for an appt. Told nurse I had seen a small amount of blood. She said, "come in now". After my GP talked to me he made an appointment on the spot with a colorectal doctor and sent me right over. At the time he said, "it's probably nothing, but I like to rule out things". Same day mass was detected and colonoscopy the next day. I thank God that my GP is so thorough. He's my hero! I had no pain, no bowel problems, no hemis, no weight loss - nothing except a small amount of blood four times over four weeks.

Liz

sephie said:

yea for 6 years
craig, what stage was your's?? i like to hear that you are 6 years post . i am only 15 months post with pain, inflammation, mucous, and a little blood. scary but hopefully just radiation damage. thanks sephie

HI Sephie:)
Mine was colorectal cancer and was originally diagnosed as a IIb, as I recall. Once it metastasied, I went to Stage IV. I've had it go to my liver and have had mets to the lung twice.

And yes, I've been hard at this fighting all the way for almost 6.5 years - when I finish up this round of treatments, I will be at the 7-year mark! I still find that hard to believe, but I am still here and that is why I post.

I check out you guys site to see if I can offer anything - I know Sue and JoAnne and I stay in touch with them and see if there are any posts that I can help with.

Radiation damage did me in big time - combined with the rectal resect, and I was a very sick puppy for 2-years and had bleeding alot. They told me after the surgery, I'd never bleed again, LOL:)

But that was alot of trauma for my body to handle and it just took alot of time for the new bowel to relearn how to be - when you mess with Mother Nature's plumbing, you really can be in for it.

There were hemohrroids and anal fissures by the handful and those are what was bleeding. So, bright red is a better color than the dark red and indicated "fresh blood." You still never get used to it though, just always makes your mind wander to that dark place. But a scope can always get you some answers and let you know what you're up against too, so that's a good tool to utilize.

Well, it was good talking with you and nice to meet you:)

Take care, Sephie

-Craig

sissy310 said:

I hear you Martha! -- my
I hear you Martha! -- my doctor, when he found out I had cancer after the hemi surgery was shocked. I really think that most GP's and even general surgeons (both of them misdiagnosed me until after the surgery) either do not know what they are feeling in there or assume if a colonoscopy is done everything is okay (both of mine asked when the colonoscopy was that I had last and I said two years). With that they just figured okay, it's a hemi. Yah, right. I have not gone back to my GP since but he asks my sons and husband if I am okay and how am I feeling. My husband thinks since this happened, he's more diligent about everything now. Doesn't do me any good. I'm not even sure I want to go back to him, even though he's been on spot with everything else. Do I blame him for being ignorant about anal cancer? I don't know. Don't know how I feel about it but I have the feeling if I ever do see him again I'm going to tell him to make sure everyone in his practice is aware that this cancer exists, rare or not. On another note, my first 3 month scans are in two weeks and I'm starting to feel the building up of stress, anxiety and depression. At first I thought I was just overly tired but I think it's the anticipatory anxiety. Every little thing is annoying me or I burst into tears for the dumbest things. My friend Laine who had lung cancer just finished her 6 month scan and is NED so we had a celebration via email. Always good to hear such good news. She said she will relax now for a few months and then the anxiety and such starts again. This truly is a roller coaster ride!

Stress - anxiety
They are part of the process. I do think we all need to be busy as we can at things we like or need to do and talk/write to each other, reassure each other, uplift as we can and ...
Live each day to its fullest. AND remember to eat well, exercise, rest.

This is a great board! Thanks all and

I hold us all in thoughts and prayers.

P

Sundanceh said:

HI Sephie:)
Mine was colorectal cancer and was originally diagnosed as a IIb, as I recall. Once it metastasied, I went to Stage IV. I've had it go to my liver and have had mets to the lung twice.

And yes, I've been hard at this fighting all the way for almost 6.5 years - when I finish up this round of treatments, I will be at the 7-year mark! I still find that hard to believe, but I am still here and that is why I post.

I check out you guys site to see if I can offer anything - I know Sue and JoAnne and I stay in touch with them and see if there are any posts that I can help with.

Radiation damage did me in big time - combined with the rectal resect, and I was a very sick puppy for 2-years and had bleeding alot. They told me after the surgery, I'd never bleed again, LOL:)

But that was alot of trauma for my body to handle and it just took alot of time for the new bowel to relearn how to be - when you mess with Mother Nature's plumbing, you really can be in for it.

There were hemohrroids and anal fissures by the handful and those are what was bleeding. So, bright red is a better color than the dark red and indicated "fresh blood." You still never get used to it though, just always makes your mind wander to that dark place. But a scope can always get you some answers and let you know what you're up against too, so that's a good tool to utilize.

Well, it was good talking with you and nice to meet you:)

Take care, Sephie

-Craig

bless you
craig, You are amazing and I love your dog!!! thankyou for telling me your story. your body has been tortured and needs a break. hope it comes soon so you can heal. hem-roids and fissures are what can fool us and doctors regarding anal cancer. mine was misdiagnosed for almost a year with a doc doing anoscopes but the next doctor caught it. I get scoped now at MDA. good luck with the tx. you are still fighting strong. nice to meet you. sephie