Almost 5 Years but have Some Questions

Chris Ptown
Chris Ptown Member Posts: 116

Hello everyone.  I hope everyone is well or on the road to being well.  I would like to ask a question to anyone who has passed their 5 year anniversary.  Mine will be in December and I was wondering if any of you ever had a second PET Scan?  I had mine when I was first diagnosed in 2011 but never had another one.  Actually the only checkups I have had are the 6 month check ups with the surgeon to make sure the cancer didn't return where he put a scope up my butt and also checked my pelvic area.  I had a pap result of "low grade" in August and then a high resolution enoscopy in September.  The doctor said there was no sign of cancer.  Since that procedure I have had problems with bowel movements.  For over a month now it's uncomfortable to have a bowel movement resulting in either flaky or hard stools with mucus and sometimes spots of blood that I can see.  Almost always when I wipe there is a mucus substance and blood on the tissue.  I have told my doctors about this and they said they don't know what's wrong.  It's so frustrating and I get exhausted after the bowel movements.  I also have sort of a contraction before I pass the stool.  I have contacted a doctor in Salem, MA who gave me a colonoscopy two years ago and have explained everything.  I am in Florida but told him I would fly to Massachusetts to see him.  I have Mass Health so I am only insured in Massachusetts.  Just wondering, again, if I am supposed to have a second PET scan approaching 5 years.  I have sort of stopped seeing an oncologist because I was seeing the surgeon who discovered the cancer every six months and he would check me out.  Really frustrated and was hoping someone might have had a similar situation.  Thank you.

Comments

  • Chris Ptown
    Chris Ptown Member Posts: 116

    Colon Rectal Specialist

    If you are not or have ot seen a colon rectal specialist I strongly urge you to make an appointmet with one.  Your symptoms are similar to mine when I was diagnosed with anal cancer in 2008.  Pet scans are not a normal procedure now as they can give false positives.

    Mike

    I don't understand your message

    Mike I do not understand your message.  I was checked last month and they said my cancer has not come back.  I was diagnosed with anal cancer in 2011 and approaching my 5 year anniversary.  You are saying you think I have cancer?

  • mxperry220
    mxperry220 Member Posts: 493 Member
    Colon Rectal Specialist

    If you are not or have ot seen a colon rectal specialist I strongly urge you to make an appointmet with one.  Your symptoms are similar to mine when I was diagnosed with anal cancer in 2008.  Pet scans are not a normal procedure now as they can give false positives.

    Mike

  • mxperry220
    mxperry220 Member Posts: 493 Member

    I don't understand your message

    Mike I do not understand your message.  I was checked last month and they said my cancer has not come back.  I was diagnosed with anal cancer in 2011 and approaching my 5 year anniversary.  You are saying you think I have cancer?

    Symptoms

    I am saying the symptoms you describe are exactly like mine were when I was first diagnosed with anal cancer in 2008.  You need to see a COLON RECTAL specialist/surgeon.  They are the experts with anal cancer.

    Mike

  • Chris Ptown
    Chris Ptown Member Posts: 116

    Symptoms

    I am saying the symptoms you describe are exactly like mine were when I was first diagnosed with anal cancer in 2008.  You need to see a COLON RECTAL specialist/surgeon.  They are the experts with anal cancer.

    Mike

    Syptoms

    Everything was fine until I had the high resolution enoscopy last month.  After that I have had nothing but problems with bowel movements.  The surgeon said that everything was fine and no signs of cancer.  He also said he didn't even have to zap anything.  But, since that procedure in the hospital I have been having uncomfortable bowel movements with itchiness in my anus and mucas in the stool.  Blood when I wipe.  I have told the doctor and my primary care doctor this and they even had me in and did a couple other tests.  THey said my anus was very swollen but had no other explanation.  I am so frustrated and figure I need to find another doctor.

  • eihtak
    eihtak Member Posts: 1,470 Member
    Chris.....

    It is my understanding that some bleeding and mucus is considered normal for usually 2-3 weeks after an HRA (high resolution anascope) procedure. Given that you had this in September, I myself would not be overly worried but would also assume these symptoms to lessen and stop soon. Are you taking a stool softener to keep your bowel movements soft. Any tearing from the scope itself will heal easier if you are not straining to go. Maybe a routine of sitz baths or tub soaks as well. You say that the results were good, thats great!!! Did they feel the need to biopsy any tissue while in there? This procedure does have a risk of minor injury to that already radiated tender tissue and unfortunately takes time to heal. 

    As far as PET scans go, I was initially treated in Jan. 2011 and had a follow-up PET scan in Jan 2012. Since then I have had several CT scans (as I was later dx with breast cancer 1 yr after the anal cancer), but only that 1 PET scan. I believe I had my last anascope at about 2-3 yrs post anal cancer treatment, otherwise just DR's (digital rectal exam) at follow-ups with my oncologist.

    Keep an open mind on this, and don't let your mind over-react (easier said than done), yet I always say, its best to error on the side of caution......so if nothing more than to ease your mind, if it is doable, you may want to connect with the doctor you trust in Salem.

    As said, PET scans are not always used as standard follow-up anymore and seems to depend on physician preference and location. Please keep us posted.

    katheryn

  • Chris Ptown
    Chris Ptown Member Posts: 116
    edited October 2016 #7
    eihtak said:

    Chris.....

    It is my understanding that some bleeding and mucus is considered normal for usually 2-3 weeks after an HRA (high resolution anascope) procedure. Given that you had this in September, I myself would not be overly worried but would also assume these symptoms to lessen and stop soon. Are you taking a stool softener to keep your bowel movements soft. Any tearing from the scope itself will heal easier if you are not straining to go. Maybe a routine of sitz baths or tub soaks as well. You say that the results were good, thats great!!! Did they feel the need to biopsy any tissue while in there? This procedure does have a risk of minor injury to that already radiated tender tissue and unfortunately takes time to heal. 

    As far as PET scans go, I was initially treated in Jan. 2011 and had a follow-up PET scan in Jan 2012. Since then I have had several CT scans (as I was later dx with breast cancer 1 yr after the anal cancer), but only that 1 PET scan. I believe I had my last anascope at about 2-3 yrs post anal cancer treatment, otherwise just DR's (digital rectal exam) at follow-ups with my oncologist.

    Keep an open mind on this, and don't let your mind over-react (easier said than done), yet I always say, its best to error on the side of caution......so if nothing more than to ease your mind, if it is doable, you may want to connect with the doctor you trust in Salem.

    As said, PET scans are not always used as standard follow-up anymore and seems to depend on physician preference and location. Please keep us posted.

    katheryn

    eithtak

    Katheryn thank you so much for taking the time to write.  I spoke to the North Shore Physicians Group in Salem and they want me to have a colonoscopy even though I had one two years ago.  So flying up there and having it next week.  Thank you again.

  • TraceyUSA
    TraceyUSA Member Posts: 316
    Chris

    Glad to hear you are approaching the 5 year mark.  Sorry you are having these troubling symptoms.

    I personally believe that the radiation has permanently changed our pelvic area and that many of us experience long-term and late side effects of it.  I recently had a colonoscopy (all was good) and it took my bowels a while to recover.  I find that a probiotic, balanced eating (including fruits & vegi's) & staying hydrated is best for me.

    As far as PET scans, I have had several.  I has one at diagnosis, one 3 months after and 2 more since then (I am 3.5 years post treatment).   I have regular appointments with my radiologist and oncologist as well as my surgeon, so they all like to do certain tests (perhaps too many but I'm ok with it for now).  I also have pelvic & abdmoninal MRI's on a regular basis (this is the means that my oncologist likes to monitor me with) in addition to the DRE's & occassional anoscopy (my surgeons preferred procedures to monitor me).

    I think it's good that you are having a colonoscopy to be sure all is good.  Keep us posted.

    Best wishes,

    Tracey

  • mp327
    mp327 Member Posts: 4,440 Member
    edited October 2016 #9
    Chris

    Sorry to hear you are having these concerns.  As you may remember, I am over 8 years out of treatment and if it's any consolation, my bowels act up now and then too.  I had my last anoscopy on September 6th. by my colorectal surgeon and all was well.  However, since then I seem to experience mucous, occasional bleeding, and bouts of constipation followed by bouts of frequency, urgency and very loose stools.  I have to believe that what I eat contributes to some of these issues.  I know this is troubling to you and that's completely understandable.  First, the good news is your recent anal pap and scope revealed nothing of concern.  Secondly, to answer your question about follow-up PET scans, I have probably had more than most people here.  My medical oncologist (who passed away last December) was a real fan of PET scans and I had so many that I actually gave the machine a name.  While he had my best interest at heart, I do believe I was over-scanned, and that could have possibly contributed to my chronic kidney disease, which was diagnosed about a year ago.  My next door neighbor happens to be a radiologist (and also a cancer survivor himself) and he once told me this about PET scans:  The good news is they show everything, the bad news is they show everything.  Many things show up on PET scans that may look or sound scary, but aren't significant.  This is the reason they are not indicated for followup post-treatment of anal cancer.  I guess my dearly departed medical oncologist didn't get that memo.  Anyway, my suggestion to you would be to talk to the doctor you trust the most and tell him of your continuing concerns.  Perhaps a colonoscopy is in order (but keep in mind that unless the doctor performing the exam turns the scope correctly, he/she will not even look at the anal canal).  The other thing I would ask about is a CT scan if it will give you a sense of relief. 

    The other thing I want you to keep in mind is that radiation has probably done permanent damage to your intestinal tract, which could be the reason you are now having these issues.  Radiation proctitis and enteritis are two conditions that many people experience after going through this treatment, including me.  Some people go through a bout of this shortly after treatment ends and it may just simply go away after the bowels have had time to heal.  However, some people have late onset, which can happen years after treatment.  Unfortunately, I think I am lucky enough to have experienced both.    The long-term type is what keeps me guessing each and every day what my bowels are going to do.

    If I were you, I would go to the doctor in MA that you know and trust and tell him everything that is going on and what exams you have recently had.  Have a frank discussion regarding your serious concerns and see what he recommends.  Just keep in mind that nothing will probably be like it was prior to the treatment you had.  I have had to accept the fact that I just have some very cranky bowels that keep me on guard 24/7.  I hope you just have cranky bowels and nothing else.  Please keep us posted and know that I wish you all the best.

    Martha

  • sephie
    sephie Member Posts: 650 Member
    2nd pet scan

    i only had 1 pet scan in the very beginning..... MD Andersonn did CT scans every 6 months for 3 years after tx..... i am 7 years post..... i do have bowel urgency with mucous and bleeding.....i still hurt on my left anal side after bm and sitting too long.... but docs said all fine..... also... i had proctoscopes for 3 years after tx to check area.....sephie

  • nonichol
    nonichol Member Posts: 170
    edited November 2016 #11
    Chris

    i have had yearly cat scans. I agree with Tracey about the long term bowel effects among other. My bowel problems began after fours years. Since you have had symptoms since the test I would check into that as well.

  • Salsify
    Salsify Member Posts: 37 Member
    post-procedure issues

    Hi Chris,

    Hope by now your issue has been resloved.

    It has only been 11 months since my treatment ended, but I also see only the colo-rectal specialist who found my anal cancer. The medical oncologist said that as there was no longer any sign of cancer, he was done. I asked the radiation oncologist if I really needed to see him as well as the colo-rectal doctor, and he said as long as someone was keeping tabs on me he guessed not. For me, the $60 co-pay for each visit to a specialist was just too much to pay unnecessarily. The colo-rectal dr. did a biopsy on what turned out to be just scar tissue where tumor used to be at about 8 months out (August, I think) and it took a while for thinkgs to get back to normal - anal soreness, trouble passing stool, excess mucus (even more than what is apparently my new norm), and so on. I started using psyllium fiber. Doctor sent me for scan which did not show anything except confirmation that cancer was gone from lymph nodes & anus & rectum. After some more weeks everything was back to the new normal. Psyllium fiber really does seem to help prevent irritation for me.

  • Lorikat
    Lorikat Member Posts: 681 Member
    I never had a pet scan.just

    I never had a pet scan.just CT scans......I'm five years out, still have times when i think I'm going to pass out when  having a bowel movement...  just my newest normal!

  • Lorikat
    Lorikat Member Posts: 681 Member
    edited November 2016 #14

    Syptoms

    Everything was fine until I had the high resolution enoscopy last month.  After that I have had nothing but problems with bowel movements.  The surgeon said that everything was fine and no signs of cancer.  He also said he didn't even have to zap anything.  But, since that procedure in the hospital I have been having uncomfortable bowel movements with itchiness in my anus and mucas in the stool.  Blood when I wipe.  I have told the doctor and my primary care doctor this and they even had me in and did a couple other tests.  THey said my anus was very swollen but had no other explanation.  I am so frustrated and figure I need to find another doctor.

    Chris, Mike is saying that

    Chris, Mike is saying that you need to ask these questions of your Doctor....  never assume....