post treatment confusion

don09
don09 Member Posts: 108
in Anal Cancer #1

Hi everyone, hope you all are well, I'm posting today in hopes of some answers as to the best way to follow up and monitor this type of cancer, I have read many conflicting information which makes it very confusing as to the right thing to do. I finished treatment in Dec. I was staged as 3b anal cancer with lymph node involvement where a new tumor appeared on my right groin area. The tumor in the anus was up against the vaginal wall, but hadn't invaded the vagina. The radiation Dr. told me prior to treatment that if it didn't work I was facing a major surgery. This is something I don't want to have to face. In March  post  treatment pet-scan was good, so I am confused as to why he now wants me to have a MRI. I guess what scares me the most is I have read others posts on various support web sites who have this disease and there is a lot of multiple types of monitoring, scans, paps, physical exams, etc. I am wondering if perhaps I should be seeing an GYN. for follow up monitoring, although I am not completely sure.

Are there any of you who had a simuliar situation after your treatments, and what are you doing in regard to follow up monitoring after treatments.  Any advice or in put on possible reasons for an MRI? Thank you all so much in any help you have to offer.

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    edited May 2017 #2
    don09

    The only person that can accurately answer your question as to the necessity of the MRI is your doctor, since none of us know exactly what your PET scan reading showed.  It may have been clear, but perhaps there was something that raised your doctor's eyebrow?  I don't know, but I would ask.  If you haven't registered on the website for the National Comprehensive Cancer Network so that you can have access to the most up-to-date guidelines for diagnosis, treatment and follow-up, I urge you to do so.  Here's the link to the website:  https://NCCN.org 

    If you are not seeing a GYN, I would do so.  A gynecologist would not be the doctor to follow-up on the anal cancer.  However, a GYN would be the best doctor to monitor for any changes in your vaginal/cervical area, since HPV is the prime suspect in not only anal cancer, but vaginal and cervical cancers as well.  Are you also seeing a colorectal specialist in addition to your radiation doctor?  My radiation oncologist only followed me for a couple of years, then left my follow-ups to my colorecal surgeon and my medical oncologist.  I am almost 9 years out of treatment and only see my CR doctor and med onc once a year now.

    I hope you get answers to your questions and that the MRI will show that your cancer is gone.  Best wishes.

    Martha

  • don09
    don09 Member Posts: 108
    #3
    mp327 said:

    don09

    The only person that can accurately answer your question as to the necessity of the MRI is your doctor, since none of us know exactly what your PET scan reading showed.  It may have been clear, but perhaps there was something that raised your doctor's eyebrow?  I don't know, but I would ask.  If you haven't registered on the website for the National Comprehensive Cancer Network so that you can have access to the most up-to-date guidelines for diagnosis, treatment and follow-up, I urge you to do so.  Here's the link to the website:  https://NCCN.org 

    If you are not seeing a GYN, I would do so.  A gynecologist would not be the doctor to follow-up on the anal cancer.  However, a GYN would be the best doctor to monitor for any changes in your vaginal/cervical area, since HPV is the prime suspect in not only anal cancer, but vaginal and cervical cancers as well.  Are you also seeing a colorectal specialist in addition to your radiation doctor?  My radiation oncologist only followed me for a couple of years, then left my follow-ups to my colorecal surgeon and my medical oncologist.  I am almost 9 years out of treatment and only see my CR doctor and med onc once a year now.

    I hope you get answers to your questions and that the MRI will show that your cancer is gone.  Best wishes.

    Martha

    Hi Martha

    Thank you Martha for sheding some light on this, to answer your question the Onc. who treated me for the anal cancer has referred me to a colorectal Dr. who I havent seen yet, but will be after my 3 month follow up with my Onc. which is set for early July. Both my Onc and rad Dr. reviewed the pet scan and said it was good, that is why I am completely miffed about this lattest news regarding the MRI.  I have heard that sometimes it can return almost right away after treatment is completed. This is a very scary time for me right now, and perhaps I'm jumping to the worst possible senario which I hope is the case, but thank you for your help and well wishes.

  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    don09

    Please keep us posted.  I am thinking all good thoughts for you!

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #5
    Don09

    I agree with everything Martha said. I hope you can call your doctor's office Tuesday morning, talk to his nurse and let her know your worries and she can ask him why he is wanting it. 

  • TraceyUSA
    TraceyUSA Member Posts: 316
    edited May 2017 #6
    Don09

    From what I have seen everyone's follow-up care differs.  I have over 4 yours post treatment (I was T2N0M0) & continue to have follow-ups with my radiation oncologist (yearly), medical oncologist (every 6 months), surgeon (6 months-year).  My rad. onc. likes PET scans, so that's what he orders but insurance will only pay for so many, so he stopped ordering them around the 2 year mark.  My med. onc. likes MRI's which were being alternated with the PET scans, then every 6 months after the PETS stopped.  I also had a CT scan thrown in one time.  This is all in addition to the regular DRE's and occassional anoscopy.  

    Best Wishes, 

    Tracey

  • eihtak
    eihtak Member Posts: 1,473 Member
    #7
    don09....

    Hi, It does seem that there is a variation in follow-up and I believe that some of that is a combination of doctor preference by location of where they practice and insurance coverage. That being said do check out the guidelines at NCCN as although they may need to be tailored to your individual situation, they ARE the recommended course of follow-up. I have had some details specific to me, yet my doctor has followed these guidelines pretty closely.

    I do have an ostomy as part of my treatment as well as chemo and radiation so had to follow that track. Still, I think I saw a colorectal doctor at 6 months and 12 months post. I also saw an GYN that specialized in gynological oncology for my 1st two pap tests post treatment but now feel comfortable with my PCP. The surgeon who did my ostomy also did my breast cancer surgery 1 yr later as well as having a port in, out, and in again and to remove a couple bothersome moles over the years, so still check in with him for one reason or another. My scan follow-up has been (about) every 6 months for the past 6 years along with office visits to my ONC every 3 months, but that is due to anal cancer, breast cancer, and mets to my lung.....so although WAY over scanned, for me, I feel its the best in a benefit vs risk scenario at this time.

    If you are ever unsure, ask questions of your medical team and remember that no matter how they are paid, (private ins., state ins., federal ins., our private pay) they work for you and if you are not satisfied let them know.

    The immediate follow-up time can be very scarey as this whole ordeal is still so fresh in our minds....I will pray that you get answers and that the MRI is just your doctor being thorough.

    katheryn

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