Follow up testing

jcorum
jcorum Member Posts: 54 Member

I am 4 years ned as of last month. My chemo doc cut me loose in May and told me no need to come back; to let my gp do my bloodwork. I quit going to the radiologist  2 years ago. I am still going to the colorectal surgeon (although I had no surg

ery) every 6 monThs. I get a ct scan yearly but the chemo doc said I don't even need those anymore. So now the colorectal doc says I need the ct scan, maybe even a PET scan and he is going to do a biopsy. My radiologist told me to NOT let him do ANY biopsies but I have twice, because he wanted to be sure. So, I am. It even healed up from the one I had 2 years ago. I still bleed when I have a bowel movement. Radiologist said those biopsies won't heal and no need if there's no reason for concern. So surgeon did the scope in his office this week, says everything looks great but he wants the biopsy to make sure he isn't missing anything. I am not sure about this. I don't want to be sorry down the road if I DONT have one but I am already not healing from a biopsy 2 years ago. PLUS a ct scan , pet scan and being put to sleep for the biopsy is all going to cost a buttload od money. (pun intended!) I had stage 2, no lymph involvement . What follow up treatment are you guys doing?

Comments

  • jcorum
    jcorum Member Posts: 54 Member
    I should have proofread it

    I should have proofread it before I sent it! I meant to say I am not even healed up yet from the biopsy of 2 years ago

  • mp327
    mp327 Member Posts: 4,440 Member
    I would say NO!

    I can understand your reluctance to refuse this biopsy procedure.  We all love hearing that we are in the clear.  However, I really do not see the need to go through a biopsy if you are getting scans because of the potential for healing difficulties.  Neither my colorectal surgeon nor my radiation oncologist favor routine post-treatment biopsy, unless there are troubling symptoms to warrant one, all because radiated tissue can sometimes not heal, as you already know.  I have never had a routine biopsy and I am over 6 years out of treatment.  The only time since treatment that anything in the area of my tumor has been biopsied was when, at 2 years post-treatment, my colorectal surgeon noticed 3 very small internal anal condylomas (warts) during my routine anoscope.  She said they did not look cancerous, but could become so down the road, and she recommended removal, which was done in the hospital under general anesthesia.  As is normal, they were sent for biopsy, but came back negative.  I can say that my healing process went well, but that is not always the case for others.

    Here's the thing I don't understand about routine biopsies.  This cancer could come back--we all know that.  But where in the anal canal would it come back if it were to do so?  At the site of the original tumor or at another location, perhaps on the other side?  How does the doctor determine exactly where to get the biopsy sample from, especially when "everything looks great" after doing an anoscope?  Going in and doing multiple punch biopsies in several locations sounds like a recipe for disaster, healing-wise, to me.  I just would not allow it to be done, unless and until there was evidence of recurrence.

    Here's another thought.  We are all aware of the changes going on in healthcare.  A couple of years ago, I learned that both my medical oncologist's and my colorectal surgeon's group practices became "affiliated" with the hospital.  I am not exactly certain of the meaning of the word "affiliated" in this case, but now any time I go to either office, all of the paperwork I sign has the name of the hospital included on it, which leads me to believe that the hospital now owns those practices.  I can't help but think that in these type of arrangements, the doctors get some pressure from the hospital to help bring in revenue, which may cause them to do procedures that may not be considered unreasonable in the big picture, but unnecessary on a case-by-case basis.  Something to think about.

    My cancer was staged right on the fence between a 1 and a 2 and I had no lymph node involvement, just like you.  I still see my colorectal surgeon every 6 months for DRE and anoscope and my medical oncologist every 6 months.  The med onc continues to get CT scans on me and this last summer I had some iffy areas show up on the one in June, so it was followed up by a PET scan, then another CT 2 months after the PET.  I am scheduled for another CT scan in February to look at the questionable area on my liver again.  No one has been able to identify what this is and I really think if any of my doctors thought it was possibly cancer, I would have had a biopsy of my liver by now.  I am seriously thinking about not having the next CT or at the very least, making it my last.  The anxiety is really beginning to get to me.  I cannot keep doing this!

    Please let us know what you decide and take care.

    Martha     

  • nicotianna
    nicotianna Member Posts: 209
    anal biopsy

    I wish I had read Martha's comments about anal biopsies!

    I had an anoscopy under sedation in the OR about 2 1/2 weeks ago.  The colorectal surgeon did 2 & they were both negative.  I have not had post-op bleeding but I think I have less control of my bowels.  Hopefully, this is temporary.  Bowel incontinence is very scary to me!

    I was resistant to having an anoscopy in surgery for starters.  My PET scan did not suggest any rectal involvement.  My surgeon has very poor comunication skills!  I will question him when I see him but...what to do?

    I think a surgical procedure generates a lot more money than an office procedure & much less hassle for the surgeon!

    I think you should refuse the biopsy.  Does the colorectal surgeon say he feels anything new on the DRE?

    Nic

  • jcorum
    jcorum Member Posts: 54 Member

    anal biopsy

    I wish I had read Martha's comments about anal biopsies!

    I had an anoscopy under sedation in the OR about 2 1/2 weeks ago.  The colorectal surgeon did 2 & they were both negative.  I have not had post-op bleeding but I think I have less control of my bowels.  Hopefully, this is temporary.  Bowel incontinence is very scary to me!

    I was resistant to having an anoscopy in surgery for starters.  My PET scan did not suggest any rectal involvement.  My surgeon has very poor comunication skills!  I will question him when I see him but...what to do?

    I think a surgical procedure generates a lot more money than an office procedure & much less hassle for the surgeon!

    I think you should refuse the biopsy.  Does the colorectal surgeon say he feels anything new on the DRE?

    Nic

    my colorectal surgeon is very

    my colorectal surgeon is very cocky And arrogant. I think if I question him, he is going to act offended. I think he is good, but HE knows it as well. I was all in a whirlwind when first diagnosed and went where the guy who did my routine colonoscopy sent me. He had no bedside manner on that first appt but I was shell shocked. At this point, I don't want to switch, but I wish I had in the beginning. I am going to have the scan, then make an appt to go to his office with my husband this time and question the biopsy . I just can't see having a biopsy when I am still not healed from the last one he did two years ago. I really liked my radiology doc. He was encouraging and supportive but has passed away since my treatments. 

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    More alternatives to biopsy.

    Hello, jcorum:

    It was mp327 who alerted me to this site: UCSF's "Anal Cancer Info": http://id.medicine.ucsf.edu/analcancerinfo/ . They are experts in anal cancer, cellular dysplasia, and their treatment, having done much research in the field. These techniques still require access to the anal-rectal vault, which might be uncomfortable or even painful for you, but biopsies are only done if suspicious areas are indentified microscopically.

    1. Anal Pap smear: Similar to the way that a cervical Pap smear is obtained and evaluated. - http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/screening.html

    2. High resolution anoscopy (HRA): An anoscopic exam is made utilizing a colposcope (very similar to cervical colposcopy). The walls of the anal-rectal vault are painted with acetic acid then examined microscopically for tell-tale signs of cellular changes. Only then, if suspicious lesions are pinpointed microscopically, are any biopsies taken. - http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/examination.html

    * If your doctor lacks the equipmant and training to perform an HRA, at least s/he should be able to take an anal Pap smear as explained by the UCSF site.

    * You can always ask the doctor and/or insurance comapny to refer you to someone who can do an HRA.

    * Here is a list of HRA practitioners from the UCSF website; they are generally clustered around urban areas. I do not know how exhaustive the list is: http://id.medicine.ucsf.edu/analcancerinfo/providers.html

    * From an 2013 thread started by forum member LaCh, I see where a number of gynecologists are trained to do HRAs on both males and females. They already have the equipment, after all, and colposcopy skills. - http://csn.cancer.org/node/264706

  • jcorum
    jcorum Member Posts: 54 Member

    More alternatives to biopsy.

    Hello, jcorum:

    It was mp327 who alerted me to this site: UCSF's "Anal Cancer Info": http://id.medicine.ucsf.edu/analcancerinfo/ . They are experts in anal cancer, cellular dysplasia, and their treatment, having done much research in the field. These techniques still require access to the anal-rectal vault, which might be uncomfortable or even painful for you, but biopsies are only done if suspicious areas are indentified microscopically.

    1. Anal Pap smear: Similar to the way that a cervical Pap smear is obtained and evaluated. - http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/screening.html

    2. High resolution anoscopy (HRA): An anoscopic exam is made utilizing a colposcope (very similar to cervical colposcopy). The walls of the anal-rectal vault are painted with acetic acid then examined microscopically for tell-tale signs of cellular changes. Only then, if suspicious lesions are pinpointed microscopically, are any biopsies taken. - http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/examination.html

    * If your doctor lacks the equipmant and training to perform an HRA, at least s/he should be able to take an anal Pap smear as explained by the UCSF site.

    * You can always ask the doctor and/or insurance comapny to refer you to someone who can do an HRA.

    * Here is a list of HRA practitioners from the UCSF website; they are generally clustered around urban areas. I do not know how exhaustive the list is: http://id.medicine.ucsf.edu/analcancerinfo/providers.html

    * From an 2013 thread started by forum member LaCh, I see where a number of gynecologists are trained to do HRAs on both males and females. They already have the equipment, after all, and colposcopy skills. - http://csn.cancer.org/node/264706

    I live in kentucky, too far

    I live in kentucky, too far to go to any of the places that do this kind of testing. However, after reading thru the info in the websites u gave me,I have decides to look for a different colorectal surgeon to continue my followups. Thank you for sending me the info and to those who gave advice. I am just. It comfortable with another biopsy when his exact words were "everything looks great "

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    jcorum said:

    I live in kentucky, too far

    I live in kentucky, too far to go to any of the places that do this kind of testing. However, after reading thru the info in the websites u gave me,I have decides to look for a different colorectal surgeon to continue my followups. Thank you for sending me the info and to those who gave advice. I am just. It comfortable with another biopsy when his exact words were "everything looks great "

    2nd opinion.

    Seeking a second opinion with a doctor or medical center that's unrelated to the first doctor is a good double-check. Be sure to see someone who has experience in anal cancer. Maybe you can get the MD to read the UCSF materials?