help new patient Squamous cell carcinom

ashck
ashck Member Posts: 2
edited November 2017 in Anal Cancer #1

Hi,

My father is diagnosed with Squamous cell carcinom, Anal Canal, Stage 2. I have been searching and reading since last few days. There are so many things going on and I am just lost and not sure what I should be doing.

He doesn't live in USA and going through the treatment outside. Two surgeons have suggested APR. Medical Oncologist has recommended Chemo (paclitexl, 5FU, cisplatin), plus Radio. He has completed 2 cycles of Chemo. He is about to start the Radiation for 7 weeks. We are trying to avoid the APR.

I live in San-Francisco, bay-area. I am trying to find out that can we get better treatment here in san-francisco, bay-area or may be MD Anderson. I am researching between Stanford and UCSF. I have few questions and hope someone can help.

1) I am looking for a doctor in bay-area that can provide the second opinion by looking into the MRI, Biopsy and other reports. Any recommendation ?

2) Should I look for Medical Oncologist or Radiation Oncologist ? I don't know may be just affriad to go to a Surgeon.

3) Should I try Stanford or UCSF ?

4) I guess it is case-by-case basis but what are the percentage chances that he wouldn't need APR ? Any input from anyone with the similar situation would be helpful in making the decisions.

Thank you so much.

 

Comments

  • Wellzen
    Wellzen Member Posts: 42
    #2
    So sorry to hear about your

    So sorry to hear about your father. I believe you should always have a second opinion.I am not familiar with Stanford or UCSF. I am sure someone here is though 

  • mp327
    mp327 Member Posts: 4,440 Member
    edited November 2017 #3
    ashck

    I am very sorry to hear about your father's diagnosis, but I'm glad you have found this site for support and information.  I guess I'm a little confused as to why two surgeons have already recommended APR for Stage 2 anal cancer.  That is not the normal protocol.  Typically, stage 2 is treated with 6 weeks of radiation and, depending on the chemo drugs used, two cycles of chemo.  Radiation can continue to work for up to 6 months, so rushing to do APR after treatment, in my unprofessional opinion, would be jumping the gun.  So that you can become more familiar with the standard treatment protocol for anal cancer, please go to the website for the National Comprehensive Cancer Network, register, and view the most current information for anal cancer treatment.  Here is a link to the website.  https://www.nccn.org/default.aspx  Educate yourself so that you can ask questions of your father's doctors.  I do not understand the urgency in doing APR.  I was diagnosed in 2008 with an anal tumor that was right on the fence between Stage 1 and 2.  I received 2 rounds of chemo (Mitomycin and 5 FU) and 6 weeks of radiation.  To date, I am doing well with no return of my cancer and NO APR.

    I think getting a second opinion for your father would be a good idea.  How fortunate that you live in the San Francisco area.  There is a doctor named Michael Berry at UCSF who has a LOT of experience treating patients with anal cancer.  I have not been a patient of his, but had the pleasure of meeting him at a conference on anal cancer a few years ago.  He is an excellent doctor--I say that based on accounts from a couple of friends of mine who have been under his care for anal cancer--and is very comitted to helping those diagnosed with this disease.  I would highly recommend him.  Here is a link to information about him. 

    https://www.ucsfhealth.org/michael.berry

    Now, as for MD Anderson, that would also be an excellent choice.  I would highly recommend having your father see Dr. Catherine Eng if you choose that institution.  I had the pleasure of meeting her at the same conference where I met Dr. Berry.  She is also very comitted to helping those diagnosed with anal cancer and she is an excellent physician.  The only caviat with her is I do think she may limit herself to treating those patients who have metastatic disease (spread of the anal cancer to other sites, such as lungs or liver), which, if I am reading your post correctly, your father does not have.  Having said that, I would still contact her and see if she would see your father if you choose that facility.  Here is some information about Dr. Eng.  https://faculty.mdanderson.org/profiles/cathy_eng.html

    I hope the above information will be helpful to you.  As I said above, I do not understand the urgency in doing an APR for stage 2 anal cancer and, if it was me, I would definitely seek out a second opinion.  Familiarize yourself with those guidelines from NCCN.  I can assure you there are a lot of Stage 2 anal cancer survivors, such as myself, who were successfully treated with chemo and radiation, without undergoing radical surgery, such as APR.  I hope you will get a second opinion for your father and that surgery will be avoided.  I wish you both all the best.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #4
    APR

    I think there is a good chance he won't need APR. Standard treatment is 6 weeks radiation plus concurrent chemo with mitomycin C  and 5FU. I think there are experts at University of Southern CA Davis. I would definately get a second opinion. 

  • sephie
    sephie Member Posts: 650 Member
    #5
    stage 2 is good

    get him over here in US..... if you can..... the protocol for stage 2 is listed somewhere..... it involves chemo at same time as radiation, not separate......md anderson is great but there is also some great doc in california but i cant remember who it is.....if Martha reads this she will remember and know where to look up the protocol......he should not agree to APR, yet..... hugs to you.....sephie

  • tanda
    tanda Member Posts: 174 Member
    #6
    Help New Patient

    Sorry to hear about your father's diagnosis; it must be especially difficult for you to know what is going on, since he is overseas.  You are thinking in the right direcction.

    as others have mentioned, APR os usually not the first step with a.c, especially not with Stage 2. The current protocol is concurrent chemo and radiation.  

    Most physicians adhre to the NCCN Guidelines.  Access is free, but you need to register

    NCCN - Evidence-Based Cancer Guidelines, Oncology Drug ...



    The National Comprehensive Cancer Network (NCCN), a not-for-profit alliance of leading cancer centers devoted to patient care, research, and education, ...check the Guidelines for anal cancer.

     

    I am on the east coast so I don't have any names of doctors at Stanford or UCSF.  A.C should be managed by a multi-disciplinary group.  Contact UCSF or Stanford  and have them put you in touch with a nurse navigator or someone who can set you up for a review of your father's records and a second opinion.

     

    The HPV and Anal Cancer Foundation

    https://www.analcancerfoundation.org/

    lots of good information AND I believe they have some connections in the bay area. UCSF has a dysplasia clinic and does alot of screening. I'm sure they can give you some info about bay area resources.



    Dr Cathy Eng at MDAnderson Cancer Center (Houston) is one of the most knowledgeable physicians about anal cancer.

     
     


     

     

     




     

    Please stay in touch...keep asking questions...we are all here to help...let us know what is happening
  • 02021992
    02021992 Member Posts: 12
    #7
    Sorry about your dad's

    Sorry about your dad's diagnosis, I've been diagnosed 3 weeks ago and surgeon said they will follow Nigro protocol of treatment,  if it fails then surgery follows, I hope rad and chemo works for your dad...

  • ashck
    ashck Member Posts: 2
    #8
    Update and Thank you

    Thanks so much everyone. Thank you mp327 and tanda. I can't describe in words the help you have given.

    My dad just completed the concurrent chemo (Mitomycin, Capecitabine) and Radiation of 6 weeks.  He will have a PET Scan after 10-12 weeks.

  • mp327
    mp327 Member Posts: 4,440 Member
    #9
    ashck

    You are most welcome.  I'm glad your dad is done with treatment and I hope that he will get all good news on the PET scan.  Please keep us posted.

  • Gail L
    Gail L Member Posts: 2
    edited March 2018 #10
    Hi all,

    Hi all,

    just diagnosed after thinking I had hemroids and mild rectal prolapse.. small tumor. Radiologist oncologist said completely curable.. but treatment is tough.  Meeting with medical oncologist tomorrow .. simulation Tuesday and pet scan Wednesday.. I plan on and want to keep working .. I’m kind of terrified... all this **** pain.. poop . Stuff. The doc wants me on white diet no fruits , vegetables, or wheat.. only white. This is opposite to the way I’ve been eating for decades.. I’m overwhelmed and afraid to poop in my pants.. any encouragement would be appreciated.. chemo and radiatin.. 6 weeks. Thx Gail

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #11
    Welcome Gail

    Im sorry you have to be here but glad you found us. Browse through old posts as you can, there is a lot of information there. Treatment is tough but doable. You can get through it because all of us here have gotten through. This cancer has a great prognosis, so keep that in mind. Keep us updated if you can.

  • mp327
    mp327 Member Posts: 4,440 Member
    #12
    Gail L

    I'm sorry you have a reason to be here, but I welcome you.  There's a wealth of information on this site and lots of support, so it's good that you've joined.  The fact that your tumor is small is good news.  This cancer has a high cure rate when caught early.  While treatment can be rough, it is of a short duration, normally 6 weeks, and there are so many of us on here who have been through it and doing well.  I hope that gives you some encouragement that you will get through it too and be free of cancer.  There are many ways to lessen the severity of the side effects, so come here whenever you have questions or encounter a side effect.  We are here to help you get through this--and you will!  Keep us posted as you meet with your doctors, have all of your pre-treatment testing, and get prepared for chemo and radiation.  You can do this!

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