Newbie here with Anal canal cancer with Crohns

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Catinkers
New Member


Date Joined Mar 2018
Total Posts : 3
   Posted 3/15/2018 2:08 PM (GMT -6)   
Hello all!
I used to be a member here years ago when I was first diagnosed with Crohns, back in the early 2000's. Never had to have any sort of surgery for the disease. February of this year I was diagnosed with having cancer of the anal canal. I am starting chemo-radiation therapy next Wednesday in hopes to just shrink it away to nothing and avoid surgery. Looking for anyone going through something similar. Not much resource out her in cyberland about this particular cancer, as it is rare. Looking forward to chatting with you all again!
Catinkers <3

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1933
   Posted 3/15/2018 7:05 PM (GMT -6)   
Don't know of anyone going through anything similar, but just want to welcome you back, and give you my best wishes. I really hope you get this under control. Is there an encouraging prognosis? Hopefully caught it early, you have much success with treatment.

Catinkers
New Member


Date Joined Mar 2018
Total Posts : 3
   Posted 3/16/2018 6:06 AM (GMT -6)   
Thanks for the welcome 73monte!
Here's a little background to my story. End of summer I went to my Gastro doc complaining. Based on my symptoms and explaining that I had what looked like a boil near the outside of my anus, he suspected abscess and prescribed antibiotics, no digital exam done by him. Went back to same doc in the fall, complaining that it still hurt back there and was getting uncomfortable to sit. Although I couldn't see anything coming out from what was there, he suspected abscess again and prescribed more antibiotics. Took this for two weeks with zero results. Called his office back but unfortunately he had just began a two week holiday, I was asked to see my family doc. Went to family doc, explained situation. Family doc did do a visual exam, but no digital. My main complaint at that time was that it was so uncomfortable to sit and felt pain stabbing from left buttcheek. My family doc thought perhaps Ischial Bursitis and prescribed some anti-inflammatories safe for my gut. Took these for about two weeks, limited relief. I then had another appointment with Gastro doc( he was back from holidays). Told him of my family docs possible diagnosis. He ordered tests for December. A colonoscopy and two MRIs. Had these, went to see family doc just for routine check up. He had the results of all my tests in his file for me. He told me they found a fistula on the last MRI done. He said I may need surgery and sent a request for me to a local surgeon. Marked it urgent. Surgeon cane back with a date in May to see me for consult. That wasn't good enough for me or my family doc. He contacted a second surgeon and she got me in to see her on Feb.6th, leaving that appointment I was scheduled for an OR Exploration with her that Friday the 9th. It was then she found the mass. She said as soon as I was out, she did a digital exam, and voila, mass. She then scoped what she could trying to gently go past the mass that was in my anal canal very near the anus on the left hand side. She took a couple biopsies. She called me into her office on Feb 15th to give me the news that the biopsies came back squamous cell carcinoma. I am on high doses of morphine and lyrica among others to help combat the great discomfort. Now I am about to begin my chemo-radiation. Duration should be about 6-8 weeks. Chemo and radiation at the same time. So far they have staged my cancer at least a 2 as it seems to be just in that spot, need to have a PET scan( not sure if I spelled correctly, but that's what it sounds like). Although this type of cancer is rare, only 10% of people get it, the success rate is high at about 80%. Remicade, which I was on, seems to be main culprit for this type of cancer.

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 384
   Posted 3/16/2018 8:08 AM (GMT -6)   
It is interesting when you said "Remicade, which I was on, seems to be main culprit for this type of cancer.".

My primary doctor ALWAYS performs a Digital Rectal Exam every year when I go in for my regular routine physical exam, because the procedure is quick and costs almost nothing. He would feel any abnormality (including prostate, mass lumps, etc), followed by an Fecal Occult Blood test on a paper strip. The result would come back instantly whether there is blood.

Different doctors in different parts of the country have vastly differently medical training.

Catinkers
New Member


Date Joined Mar 2018
Total Posts : 3
   Posted 3/16/2018 11:49 AM (GMT -6)   
The line about Remicade being the major culprit is me quoting my oncologist. I live in Ontario, Canada.
A big part of the anger my family and I feel, is for the fact that the gastro doc could have felt this much sooner, if he had cared to look. A mass that size doesn't just show up overnight.

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 384
   Posted 3/16/2018 3:18 PM (GMT -6)   
Even my primary care doctor (you may call him an internist in Canada), who has no specialized training in gastroenterology, asks me to lie down and do a quick Digital Rectal Exam every year, because he wants to be on the safe side due to my Crohn's Disease. I cannot imagine your gastroenterologist would not do it. Time is critical, since the sooner you find out anal cancer, the better the outcome.

My primary care doctor has bugged me to do a colonoscopy for years. But I did not follow his advice. That would be totally my fault if anything happens to me.
Diagnosed of Crohn's Disease in 1994. Having been treated exclusively with Chinese herbs for 20 years. Currently not on any western medicine.

countess18
Regular Member


Date Joined May 2016
Total Posts : 251
   Posted 3/16/2018 8:41 PM (GMT -6)   
wow were you on Remicade only or along with other immunosuppressants? This is scary. I'm so sorry it took so long for you to get diagnosed but sounds like you still caught it in time.

Erudite Paul - where is your Crohn's i.e. small intestine vs large and what are the herbs that you take?
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 384
   Posted 3/16/2018 10:54 PM (GMT -6)   
Countess: when I was diagnosed in 1994, I had ileocolitis, since colonoscopy found inflammation in both terminal ileum and colon. But right now, my problem is small intestines with multiple strictures. The herbal drink consists of some 16 different kind of herbs, which keep things under control. My GI said sooner or later, I may face resection surgery. But the doctor said statistics show that after surgery, I may keep the disease under control for a long time.
Diagnosed of Crohn's Disease in 1994. Having been treated exclusively with Chinese herbs for 20 years. Currently not on any western medicine.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 881
   Posted 3/17/2018 9:55 PM (GMT -6)   
Catinkers,

Welcome back. I wish it were under better circumstances. I am so sorry you are going through this!

I am confused. I thought that anal canal cancer was very slow growing. Did you have a yearly colonoscopy every year since your diagnosis? Or were there some missed? I just don't understand how something like this was missed.

I have been on Remicade since 2015 and it scares me every time I have an infusion and now, with your situation, this is just one more thing I have to be on the look out for.

I hope that your treatment plan goes well with no side effects.

You and your family are in my prayers...

Clo

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1120
   Posted 3/18/2018 10:39 AM (GMT -6)   
Wow, I am so so sorry you are dealing with this. I feel the same way as Clo. I can't believe they could miss that. How was it not noticed during the colonoscopy even? I hadn't heard any recommendations for yearly colonoscopies but surely you had a few since diagnosis? How long were you on remicade? I've been on it and 6mp for 2 years. I try not to think about it but, like Clo, the fear is never too far from my mind that I might one day regret being on them even though I have no choice at the moment. I hope you are able to get it under control and out of your life soon! I read a book called "Everything Happens for a Reason and Other Lies I've Loved" the author had a similar run around with colon cancer taking far too long to get diagnosed. It's hard to believe.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16423
   Posted 3/18/2018 1:32 PM (GMT -6)   
Catinkers, I am sorry to read about everything you have going on. I feel as you do, your gi dropped the ball with your care. I was on Remicade for close to 4 years & was closely monitored by my gi. My infusions were every 4 weeks & even though the risks are small for cancer he kept a very close eye on his patients. There was quite a few of his patients on it. His practice was in a small town with a small hospital. No one received their infusion unless he was in town. Most of the time he was at the hospital when infusions were being done & he always came in the room to check on us. I only remember once that the staff had to call him over a patient & he was there in 5 minutes.

It does sound like your was caught early thank goodness. And yes, you are correct about the Pet Scan. Keep us posted. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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