Anal Pre-Cancer with HPV 16/18

Hi @lcmtc, welcome to Connect. Reading your message, I can see that you have taken great care to monitor your health, understand all the test results and advocate for yourself. There are a few members who can relate to various parts of your story. I'd like to first introduce you to @travelgirl who was surprised with cecum cancer at the same time as discovering she had follicular lymphoma. She's here to tell you that she's doing well and living life to it's fullest.

@sbsurfside's husband has a similar story where hemorrhoids were the likely suspect, but it was cancer. @susan24 had anal cancer years ago and @mouselife has been treated more recently. My hope is that their stories will give you hope. While something was missed in 2015, you are in good care now and you can focus on preventative care as you have pre-cancer and are being monitored. Colorectal cancer is slow growing. You are young and shouldn't leap to thinking about a colostomy. I realize that is easier said than done.

Keep asking questions, lcmtc.

Thank you for your kind response and referrals. I have privately messaged them hoping they can give me some insight. Thank you again.

@lcmtc First I want to say sorry I missed this over the weekend. It was my anniversary and I wasn't near a computer all weekend.
And secondly welcome to connect.

I get the angry and scared more than you ever could imagine. When I was sick I didn't have any symptoms of either cancer. I had caught H-Pylori a bacteria infection in my stomach. It was from testing to diagnose that, that Dr's found 2 primary cancers at once. Prior Dr's I saw brushed off my symptoms.

I'm Rare and Unusual so they say. Catching 2 cancers fairly early with no symptoms. And I was 53 at the time. This is almost 3 years ago now. Talk about going into shock? I hyperventilated for the first time when I was told this. It was hard to comprehend and understand what it all meant?

I had to have a foot of my colon removed ASAP. That we believe took care of the Cecum Cancer. Although you end up on a watch list for the next 5 yrs of your life. Every six months they want blood to monitor the disease. And every 6 months there is that panic you have deep down inside praying that is hasn't come back.

and not only am I watched like a hawk for one cancer, they do it for two. The Lymphoma there is no cure. They monitor that with a CT scan every 6 months or a year if there no changes to lymph nodes. So I do a double dose of panicking.

So I have to keep reminding myself that being watched like a hawk, is better then no one paying attention at all. At least they can put a halt to the disease if decides to become active. Which I think is better than no one watching, and by the time they figure out what your symptoms are it is too late.

And YES by all means you need to read your medical records yourself. You should be thankful you caught what you did before it was any worse. So many do not and it is too late.

I also have a dear friend who had anal cancer, and I can tell you this. She was told, she would need a permanent colostomy by several Drs. Well she keep researching Dr's and found one who could do the surgery, and today she is cancer free. Plus the colostomy was temporary and she is living a normal life raising her grandkids and traveling the world. She was in her early 50's too when she was diagnosed. She is now 60 yrs.

You are in good hands with Mayo Clinic. I know this is easier said than done try not worry.. If your watched like a hawk they can catch it all early...
I wish you the best
Jackie

I am so sorry that you have had to go through all of that and continue to have to AND am glad your friend is doing well. Thank you for your kind words of encouragement.

Hi @lcmtc,

While we wait for other members to join in, I sincerely encourage to take a look at the Gastroenterology & GI Surgery Page on Connect where Mayo Clinic colorectal cancer experts have answered some common questions through short videos.
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/tab/colorectal-cancer/
For example:
– What do the stages of colorectal cancer mean?
– What are the treatment options for colorectal cancer?
– Is immunotherapy an option for colorectal cancer?

With regard to surveillance colonoscopy, here are 2 videos where Mayo Clinic gastroenterologist Dr. John Kisiel explains the benefits and the process of these colonoscopies:
– https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/surveillance-colonoscopy-may-reduce-colorectal-cancer-risk-in-ulcerative-colitis-2/
– https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/interval-colorectal-cancer-low-with-surveillance-colonoscopy-1/

@lcmtc, I wish you all success, and look forward to hearing back from you – updates, questions, concerns – the Connect community is here, listening.

24 years out after 24/7 pump infusion of 5-FU still have diarrhea. Has there been any developments on how to improve or relieve this problem? Missing a foot of my colon and lost my bowel but I am still alive and kicking. Any suggestions would be appreciated on how to control the beast. Thank you!

Ken, I wonder if fellow members @lcmtc @marty28 @wilcy may have some tips on managing diarrhea so many years after surgery and chemo to colon cancer.

Are the foods you avoid?

Ken+d, colon cancer.

In 1994 I was diagnosed with breast cancer. In 1996 I was diagnosed with FAP, a colectomy was done. In 1997 a Pull through J Pouch surgery was done. In 2012 the pouch failed, and an ileostomy was done. In 2010 Breast cancer again and I opted for a bilateral Mastectomy.
On Friday 07/22/2022 a mass was found in the anal stump area. I was diagnosed with Mastatic Adenocarcinoma. I see an oncologist today to discuss the plan of action. PET scan with possible radiation and chemotherapy and surgery.
This has been a long road. I am mad as hell as I have done everything right to live and I've had a good life. Yet here I am. I just don't know what to think.

I am so very sorry you are dealing with this crap. I think all of the waiting for answers is one of the most difficult phases of the reoccurrence process.

I was diagnosed in 2013 with Invasive lobular carcinoma at the age of 65. I also did everything right with double mastectomy, chemo, 5 years of aroma tase inhibitors. In April of this year I went to the ER for a bad stomach bug which turned into a roller coaster of tests, biopsy’s, etc. Yesterday I had an upper endoscopy ultrasound of an area mass in the hepa porta area (sorta by the liver.. but not in it) Suspicious for adenocarcinoma from breast cancer almost 10 years ago! Now I am waiting more days for biopsy results. I had this in a bigger city because my hospital does not do this procedure.
All this is to say waiting is terribly hard and I get being mad. Some days all you want is to go back to “before”. Some days I want to know everything and some days I do not want to know one more thing about my situation.
What does help me is meditating, mantras such as “I can do this” and having a good therapist that I see regularly.
My sadness comes when I think of my grown children having to think of loosing me even though they are grown with lives of their own.
I totally get where you are coming from. I hope you have a good support system and hope you are able to take one thing at a time and know that you can do whatever is in front of you. Thinking of you wherever you are with many survivor hugs!