Richard's Cancer Blog

APR....PART 2

THANKS SO SO SO SO SO SO MUCHO FOR ALL OF YOUR INPUTS EVERYBODY.

THIS IS THE QUICKEST WAY TO ANSWER ALL OF THE QUESTIONS ASKED by YOU'LL

I HAD A COLONOSCOPY LAST JUNE AND THATS WHEN THEY SAW THE CANCER AND A MONTH LATER--JULY24, 2018  I STARTED MY TREATMENTS

THEY FOUND A SUSPISIOUS POLOP AND THE LITTLE HAND CAME OUT OF THE OSCOPY TUBE AND TORE IT OFF OF THE INTESTINE...IT TESTED BENIGN.

ON TUESDAY WHEN I SAW THE COLORECTAL SURGEON, SHE SAID THAT ITS STANDARD TO HAVE A COLONOSCOPY BOUT 6 MONTHS AFTER THE TREATMENT....I GUESS THE V.A. DOES THINGS DIFFERENTLY.

THEN SHE LET ME KNOW THAT IF THE OSCOPY SEARCH COMES OUT THAT THEY FOUND CANCER...THE ONLY RECOURSE I HAVE IS....

APR!:(:(:(:(

IT MUST BE VERY RARE SOMEONE HAS IT CAUSE NO ONE HAS ANSWERED ON HERE AS HAVING HAD ONE OR KNOW OF SOMEONE WHO HAS HAD IT.

HERE IS WHAT MY GAME PLAN IS GONNA BE GALS SO LET ME KNOW WHAT YOU THINK:

I WILL TELL THE SURGEON THAT I WILL NOT DO THE COLONOSCOPY WITHOUT FIRST GETTING SEVERAL FIRST HAND ACCOUNTS FROM ACTUAL PATIENTS

THEN I WILL DECIDE TO HAVE THE PROCEDURE.

DOES ANYONE KNOW IF THE RECURRANCE OF ANAL CANCER GROWS FASTER?  I FIGURE IT TOOK 68 YEARS TO GROW IN ME SO MAYBE I CAN NOT DO THE COLONOSCOPY AND GET THRU ANOTHER 10-15 YEARS

.....BY THEN I'M 80SOMETHING AND I FIGURE ITS TIME TO GIVE IT UP

IT DOES ME NO GOOD TO HAVE THE PROCEDURE IF I AM NOT GONNA HAVE THE APR

LASTLY, WILL SHE GUARANTEE THAT THE CANCER WILL BE COMPLETELY REMOVED BY REMOVING ALL OF MY INSIDES??

I HAVE GOOGLED APR BLOGS, CHAT ROOMS, PERSONAL TESTIMONIALS TO NO SUCCESS.

YOU ALL EACH AND EVERY ONE OF YOU AND YOUR FAMILIES HAVE A SAFE AND AS WONNERFUL A WEEKEND AS POSSIBLE

richard

 

 

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So from my understanding as long as you go for your follow ups and everything is clear and the further out you get the chance for reoccurrence is slim again it all depends on the individual. When I had my initial colonoscopy they found one benign in my intestine and the other in my anal area that was cancerous. I did not have another colonoscopy until my 5 year mark which was this year and I was clear. You were the same stage as me and it sounds as if your doing what you need to do. As for reoccurrence yes I was told APR is the next step. I hope this helps
Richard likes this comment
Also it is not standard protocol to do a colonoscopy after treatment andoscopy yearly is enough unless you are having issues.. My dr is doing colonoscopies every 5 years since radiation in the pelvis region gives you a higher chance of getting rectal cancer.
Olga likes this comment
My advice- get the colonoscopy and the results. Then make a decision.
Olga likes this comment
I had full salvage APR 2 years ago, if you need one better early than late, by the time my recurrence was found the cancer had spread through the bowel wall and wrapped around my lumber sacrum.
Even after chiselling spine, they were unable to get it all, over the next year it spread to my thoracic spine T5 & T 12 my abdominal wall, my hip ( iliac bone) and lung, I had more chemo.. this time cistplatin and 5fu
By the end of the year I was told I was stage 1V and incurable... I was given 6 months to 2 years to live...
However ....
Further chemo and radiation kept pushing it back, currently.... over 2 years later! My cancer is inactive except for a small stubborn area in my lung
The price I paid for the extra chemo/ radiotherapy is chronic osteoporosis in my bones, spine, hips etc
But worth it...
So have your tests... and if you need it an Apr, the earlier they catch anything, definitely the better!
Good luck & keeping everything crossed for you
Xxx
3 people like this comment
Okay, I must confess, I am very confused. Did your doctor find reason to think your cancer may have returned, based on your recent exam? Or is this just part of her follow-up protocol? You keep mentioning APR as if there is a suspicion that the cancer is back. My colonoscopies post-treatment were done because that's what my doctor insisted upon, not because I was having any symptoms of recurrence.
Richard, I have stage 3B anal cancer, and when they did the colonoscopy and biopsy over 2 years ago, that's when the cancer was found, then started treatment. One year later, my colo-rectal surgeon did another colonoscopy, even tho all PET's were clear and treatment successful. For 2 years post treatment, I had internal exams every 3 months and PET scans every 6 months with follow up by all 3 of my cancer doctors. Now, my next PET is 9 months out, no more colonoscopies for now and internal exam every 6 months. Better to be safe than sorry and trust your doctors or find new ones! Good luck to you!!
Olga likes this comment
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JULY 24TH--1ST DAY OF CHEMO-RAD STARTS

IT IS HARD TO BELIEVE THAT ITS BEEN OVER A YEAR SINCE I WAS DIAGNOSED AND STARTED MY 1ST DAY OF TREATMENT.

10 MONTHS LATER, IT SEEMS THAT ITS BUTT HAS BEEN INCENERATED TO A CRISP--AS WAS MY NETHER REGION FOR A FEW MONTHS!

SO I WENT TO SEE THE COLORECTAL SURGEON ON TUESDAY AND SHE DID THE PROBE--BUT FIRST I HAD TO SCHOOL HER ON HOW TO PREP HER FINGER....I TOLD HER-"DOC, UR NOT JUST PUTTING THE FRONT PART OF THE FINGER IN-ITS THE WHOLE FINGER-BACK/FRONT/SIDES SO MAYBE YOU SHOULD SPREAD THE K-Y ALLOVER YOUR FINGER AND THEN DONT GO IN LIKE YOUR PLAYING "RED ROVER"-NICE GENTAL PRESSURE"....IT WAS LIKE BEING IN HEAVEN!:)

AFTERWARDS SHE PULLED OUT HER E-CIGARETTE AND HAD A FEW PUFFS!:):)

ANWHO WE STARTED TALKING THE DREDDED COLONOSCOPY REDO THATS SCHEDULED FOR SEPT 3RD. AND THEY WILL TAKE OUT A COUPLE OF SCOUPS OF INTESTANT  AND TEST IT FOR THE BIG "C" AND IF IT SHOWS ANY----ITS GOOD BYE COLON, RECTUM AND I WILL ACUTALLY BE LEFT WITH A REAL assHOLE!

THE APR IS IT SEEMS----THE ONLY REMEDY FOR ANAL CANCER RECURRANCE. AND THEY STILL CANNOT GUARANTEE THAT IT WONT APPEAR ANYPLACE ELSE IN THE FUTURE.

YOU ALL ALREADY KNOW MY THOUGHTS ON FOREVER BEING IN AND OUT OF HOSPITALS/TREATMENTS.

MY QUESTION IS THIS:

DO ANY OF YOU KNOW OF SOMEONE THAT HAS HAD THE APR PROCEDURE OR HAVE YOU HAD IT YOURSELVE.

I WANT FIRST HAND EXPERIENCE/CONVERSATIONS ABOUT ALL OF THE THINGS HE/SHE/YOU WENT/GOING THROUGH BECAUSE OF IT AND THE ADDITIONAL COLOSTOMY SITU.

I HAVE UNTIL SEPT 3RD TO CANCEL IT.  IF WHAT I GATHER IS THAT IT JUST IS A COMPLETE HELL AND NEVER ENDING MEDICAL PROBLEM PIT....THEN IT DOES ME NO GOOD TO GET THE COLONSCOPY PERIOD. IF I KNOW I WILL NOT PROCEED IF THEY FIND CANCER.....WHY DO IT TO BEGIN WITH CAUSE NOW I WILL KNOW I HAVE IT AND THERE  IS NOTHING I CAN DO ABOUT IT.

PLEASE LET ME KNOW YOUR THOUGHTS/ETC.

ALSO, ON A LESS IMPORTANT AREA...THE EMPLOYER I HAVE HAD FOR GOING ON 20 YEARS IS GOING THRU A PARTNERSHIP BREAKUP AND THAT IS ALSO ADDING TO THE POTENTIAL NEGATIVE ISSUES I HAVE.... I CAN POTENTIALLY LOOSE MY APARTMENT AND A GOOD CHUNK OF MY SALARY IF THINGS GO SOUTH.

AS ALWAYS, WISHING ALL MY FRIENDS THE BEST DAY YOU CAN HAVE AND THE LEAST PAINFUL EVENING.  LIFE IS LIVED ONE DAY AT A TIME....NO MATTER IF I WANT TO LEAP FROG ANOTHER 5 YEARS!

 

3 people threw a punch at your cancer.
5 people sent you a hug.
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Are you having symptoms that brought this on?
NOPE, BUT THEY HAVE BEEN TRYING TO GET ME TO DO THE COLONOSCOPY AS THEY DO IT WITH EVERY ANAL CANCER PATIENT AND I JUST HAD NOT DONE MINE
I started treatment just a couple of weeks after you and have not had a colonoscopy recommended.
Have you had an anoscopy? Colonoscopies are not the preferred tool for finding anal cancer - new or recurrent...Read the NCCN guidelines (check my website for links...) I don't understand why they are doing this. My oncologist NEVER insisted on a colonoscopy and when I went to my gastroenterologist last year about getting an update (it's been five years plus) he said come back next year....


Sorry about the other stress...not fun...don't think about it more than you have to!
Easterly likes this comment
Hmmm. Well I can tell you that I did have a sigmoidoscopy about 6months after TRX...he wanted a closer look at some scar tissue. Now I'm on an every 5year for colonoscopy. Not sure why you are thiothey would do an APR at this point? ..or even be considering it? Only if it is recurring typically I believe? There have been others here that have had APR so I think they can answer specific questions...but I don't think you need to go there at this point. Hugs to you!
Richard: Here is the PDF to the NCCN guidelines for anal cancer:
https://www.nccn.org/professionals/physician_gls/pdf/anal.pdf
(Page 3, click on Follow Up)

Here is the the link to their mainsite: https://www.nccn.org/professionals/physician_gls/default.aspx#site
Helen Marshall likes this comment
Is it possible to mention this to your doctor to see her comments?
Colonoscopy, is a different subject, and doesn't address anal area. Ask them if they are following the NCCN.org guidelines.
Anoscopy, or and HRA (High Resolution Anoscopy) are used for routine follow up.
Only if they have reason to suspect cancer may have returned, that they will do a biopsy.
There is some difference of opinion about whether to do anoscopies or HRA after AC Treatment with Colorectal doctors.
But the NCCN.org is a site with the most statistically updated information. I use the medical site; as opposed to the patient site.
I took this info off the site for our stage 2 in regard to aftercare:

DRE every 3-6 mo for 5 y
Inguinal node palpation every 3-6 mo for 5 y
Anoscopy every 6-12 mo x 3 y
Chest CT with contrast and abdominal/pelvic CT or MRI with contrast annually for 3 y

Colonoscopy is NOT the protocol for follow up, anoscopy is. I chose to have my first follow up asleep and with a flex sig, just to obtain photos for the future follow ups. This was with my beloved gastroenterologist, the anoscopies were later done by CR surgeon. Apparently GI docs don't bother with anoscopies any more, way more $$ in colonoscopy. They also do not recommend random biopsies! Especially on radiated skin. Is there some reason they believe you may need an APR? I'm guessing you have had scans. Sorry, on my phone and can't look back over your posts. The RN in me says, they need to follow the NCCN Guidelines, and colonoscopy just ain't there! Damn, we have to educate these people. I just don't understand why they make this sh*t up as they go along. The guidelines are based on the very latest RESEARCH. If I were in your shoes, I would print them out, (the professional ones), and ask why they are not following them. I also did this with my oncologist, who wanted to scan me constantly. I'm sorry, sounds like they want to make money. My last colonoscopy prep hurt like hell and made me bleed. Thst was the 5 year one, not sure if I'll do that again in 5 years. Take care Richard, and don't let em push you around, just because "they always do it this way".
I had a colonoscopy 3 years after the end of treatment because it was time for me to have a colonoscopy; anal cancer had nothing to do with it. One polyp was found and I will have another colonoscopy within 3-5 years.
Easterly likes this comment
Richard, I'm wondering if you're due for your routine colonoscopy, and your doc wants to check your colon and anus at the same time? Or did your doc mention that your MRI shows some bowel thickening or anything suspicious she wants to look at? Another, if your Hgb and Hct are low, she may suspect some internal bleeding, and in this case the colonoscopy might be ordered. I'm just trying to understand her reasons...
Easterly likes this comment
Colonoscopies--ugh! I was treated for anal cancer in 2008 and for the first 5 years after that, I had one yearly, as per my doctor's persistence. I skipped 5 years after that with my most recent one being last September. I do not intend to have another one for at least 10 years unless I have symptoms. I think my butt was a "money maker" for her. She's going to retire anyway. Yay!

Since I'm not sure of your age and your past history with colonoscopies, perhaps you are due for your first one? Was your cancer found during a colonoscopy? It used to be age 50 when people were to get their first one, but it may be a younger age now--not sure. If you've never had one, then IMO, getting that first one might be a very good idea to check for polyps. My husband had a few polyps removed on his last scope. This is just another angle to think about. I would hate to think someone survives the horror of anal cancer and its treatment, only to have to go through treatment for colon cancer, which can often be prevented. Just my take on this.

As for your job situation, I hope that it will all work out for you so that you keep both your apartment and your job. I am sending all good wishes your way!
Olga likes this comment
Please don't mention the dreaded APR. I am almost a year out as well and also saw surgeon for 1st time for anoscopy. He was young and after uncomfortable rectal exam, he attempted sigmoidoscopy right in the office. I almost jumped out of my skin in excruciating pain as he was trying to insert the scope. He stopped thank God but now I will have to have it with anesthesiologist support in a hospital setting. I was probably being a difficult patient but just felt like u to have to remind him of post treatment traumatic injury so he can be more careful and gentle. He wanted to bx and I disagreed. We then agreed on bx "suspicious" LESION not fissure, not inflammation not hemorrhoids. He wants to give me lidocaine injection for numbing and will cause temporary incontinence. I will decline if course, I will be knocked out for 5 min anyway why would I need numbing to risk infection in a dirty area. Since recent MRI was negative for tumor I am also seriously canceling procedure. It's just that I have been wiping a little blood when my stool is a little harder than usual so I may want to know if there is a fissure, I hear it's treatable. My point is I only have one asshole that I own and I have to protect and u only have one too. I would be wary when someone doctor or not doesn't take the trauma we went through into consideration. I can understand anoscopy or even flex sigmoidoscopy that goes just couple of inches past anal canal but colonoscopy necessary? And to biopsy when not needed?? Sorry u are going through financial changes, just hang in there k?
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Vital Info

Posts

July 10, 2018

Los Angeles, California 90005

February 6, 1951

Cancer Info

Anal Cancer

squamous cell carcionoma

June 4, 2018

Stage 2

4.1 - 5.0 cm

Negative

No

Fluorouracil (5-FU)

the fears associated with it, the unknown, the WAIT FOR THIS TO START

always learning, that its all around us....its not till it hits you that you realize how common it is

stay positive with me. stay in the now.

not as of 6/04/2018

WEST LOS ANGELES V.A. MEDICAL CENTER-WESTWOOD

during treatment.....try your hardest not to give up on your treatment.....yea- it almost felt like it was killing me but here I am

believe in yourself and/or in your beliefs/god/etc

September 5

1st MRI NOV. 5 2018--NO SIGN OF TUMER/GROWTH....2ND MRI--NO SIGN OF TUMER/GROWTH

a week after having completed my PSA and urine tests(5/22/18), i noticed blood in the toilet and completed the F.I.T--fecal immunochemical test.... I forgot to mail it in and drove to the VA and had them give me another one, did it and that afternoon i returned it...two days later i received a call to schedule a colonoscopy for June 04, 2018. results came back positive for a ployp that was excised and also a 4-5cm malignant growth on the dentate line of the anus--right smack in/around my spinchter muscle. T3N0M0...prognosis seems to be really good as it has not traveled nor gone into nodes. scheduled to start chemo/radiation with 5-FU and mitomyacin first 4 days and last 4 days using a PICC line.

AM NOT USING THE 5-FU....INSTEAD ITS CAPECITABINE 500MG

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