Extreme newbie

derrasims
derrasims Member Posts: 2
in Anal Cancer #1

Seems I am just starting this journey.  Just diagnosed with anal/rectal cancer.  Stage 4, no lymph nodes but liver Mets.  I thought I had a hemorrhoid.  So confused.  Stage 4 sounds bad but no lymph nodes sounds good. Can't seem to find much regarding survival...which concerns me.  Doctors are saying chemo and radiation but no surgery.  The liver met is not amenable to biopsy because of location.  Any things I should be asking?  Does ayone know if this is curable or just prolonging the inevitable.  Any thoughts would be appreciated.

Comments

  • annie4145
    annie4145 Member Posts: 218 Member
    #2
    Please get to the best large

    Please get to the best large teaching hospital possible, and get a second opinion as necessary.  I don't know where you are located or any of your personal circumtances, but I have heard two of the best hospitals are in new york and houston.  Go back through some of the old posts here.  I think the name of Dr. Eng (?) has been mentioned as a doctor which is very good.  I attend UCSF and it also is an excellent institution.   Also search clinicial trials at https://clinicaltrials.gov/.  You perhaps may be eligible for one of the newer immune therapies.  I don't have any specific information to assist, but there have been positive successes even at stage 4.  And as one person summed it up, part of the "game" so to speak is to stay in the game until there is a definitive cure for everyone with this disease.  Please PM if you want to talk personally.  I am diagnosed with stage 3, age 51, with two kids (ages 10,12).  Just make sure that you are with the best doctor that you can find, that is reasonably close to where you live. 

     

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #3
    derrasims

    So sorry to hear of your situation.  I'm not sure of your location, but in your current status, I would definitely be trying to secure an appointment with Dr. Catherine Eng at MD Anderson in Houston.  She is, IMO, the top doctor in the country for treatment late stage anal cancer.  If that is not possible, Dr. Berry at University of California/San Francisco is another top doctor who specializes in anal cancer treatment.  I have met both Dr. Eng and Dr. Berry in person and I can assure you they are very dedicated to their specialties.  If neither of these work out for you, I know that Memorial Sloan Kettering in NYC has some good doctors where anal cancer patients have had treatment, although I do not have any names for you. 

    As annie4145 has mentioned above, your other option is to search for any clinical trials that you might qualify for.  I know that Dr. Eng is involved in those on a regular basis.

    I wish you all the very best as your search for a plan to go after this disease.

  • derrasims
    derrasims Member Posts: 2
    #4
    I live in alabama. My 84 year

    I live in alabama. My 84 year mother with Alzheimer's lives with me and my husband.  It would be virtually impossible to travel as I have no other caregiver for her.  Hope previous answers aren't my only hope for surviving this.  Our town has a satellite cancer center from the university of alabama. 

     

  • eihtak
    eihtak Member Posts: 1,473 Member
    #5
    derrasims said:

    I live in alabama. My 84 year

    I live in alabama. My 84 year mother with Alzheimer's lives with me and my husband.  It would be virtually impossible to travel as I have no other caregiver for her.  Hope previous answers aren't my only hope for surviving this.  Our town has a satellite cancer center from the university of alabama. 

     

    derrasims...

    Hi,

    I am sorry that you have the need, but glad you found your way to this forum as it has been a huge support for so many of us and I pray we can be here for you as well.

    No, the previous answers are excellent suggestions but most surely not your only hope! Sometimes travel to these larger centers is just not possible for people, but that doesn't mean you can not benefit from their expertise. I live in a smaller town as well but overtime have come to view my doctor as one who deserves a great deal of respect for his education, experience, and expertise in oncology treatment.

    I was initially dx almost 8 years ago with stage 3b anal cancer (with lymph node involvement). I received protocall chemo / radiation as well as surgery for colostomy with the possiblity of reversal down the road. A year later dx with an unrelated breast cancer. Four years after the anal cancer dx I was dx with anal cancer mets to my lung for which I had surgery followed by an aggressive course of chemo. And....now, (just short of 8 years from when it all began) I am again in treatment for another met to my lung of the anal cancer for which I am receiving high intensity SBRT radiation.

    Many doctors (mine included) are more than willing to do a phone consult or other type of communication with doctors at some of the larger well known centers mentioned. Your doctor will likely do a complete assessment of where you're at and if you ask, work with you to share the info with whoever you suggest to receive a second opinion. Do not feel uncomfortable asking for this...it is well within your right and common to do. Most doctors probably (though don't admit it, lol) like the affirmation of a specialist when their opinions are in sync! I would suggest that you try if possible, (while options may be limited in some areas) to find a doctor that has reasonable experience in treatment of this disease. It is still considered rare, though from the amount of members here that doesn't seem so.

    Check out the https://www.nccn.org   (National Comprehensive Cancer Network)  where you can register and check out lots of information for cancer by type and stage as well as protocall guidelines that physicians are to follow. (Keep in mind that every case does have some unique characteristics and treatment needs to be tweaked to fit at times) In the beginning I told my doctor that I had checked there and he was right on target...he probably thought I was bonkers for saying so but I wanted him to know I was informed.

    As for me...I've had some rough patches and am once again in the midst of a storm myself, but in between I've felt great and I am holding my ground this time too.

    I will have you in my thoughts and prayers for responsible, successful treatment. Please stay in touch as you move ahead and we will be here to offer help and support along the way.

    katheryn

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