Radical APR surgery Abdominalperineal Resection

Msmoxie
Msmoxie Member Posts: 46 Member
in Anal Cancer #1

I keep reading the many blogs and topics and I continually see reference to surgeries performed but I am specifically wanting to hear from people that have undergone the radical APR surgery.  When I was first diagnosed in Aug. 2017 with this SCC Anal cancer the doctor that had performed the colonoscopy said "There's only ONE way to do this... chemo/radiation/surgery" ... APR surgery no less)... With all of the research I have done since my diagnosis ... Not only is this surgery barbaric and has a50-78% complication rate (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780192/) ... Due to the location of my tumors ... this is the surgery they want to perform on me as "standard protocol".  I am participating in numerous consultations with oncologists, surgeons and my primary physician.  I have finally been approved for a consultation with Memorial Sloane Kettering in the next few months.  

I hope to hear from others that have this radical APR ... considered "salvage surgery" to see what their experience is.  I cannot even imagine waking up after having this surgery performed.  I cannot imagine four to six months of trying to get past all of the issues arising from the removal of so much of my body ... the gaping hole that they describe as "large perineal defects".

Directly from this article:

Perineal wound complications following APR are a common and significant problem, and include wound infection, abscess, dehiscence, delayed healing, and persistent perineal sinus. These complications result in significant morbidity that requires prolonged hospital stay, hospital readmission, home-nursing wound care needs, and the expenditure of significant medical costs.1 Furthermore, patients with significant perineal wound complications after APR for cancer have an increased incidence of local recurrence adversely affecting long-term survival, which may be a direct result of delay in adjuvant therapy.2 For the patient, these wound complications are painful, malodorous, and require constant care, which adversely affects quality of life. The purpose of this article is to review the risk factors associated with perineal wound complications in APR, to discuss operative techniques such as tissue transfer to optimize perineal wound healing, and present commonly available methods to treat perineal wound failure.

I am currently NOT suffering and live an active life with just the incontinence (fecal) to deal with.  Knowing what I know about the APR surgery, the numerous complications and side effects from the chemo and radiation that they use on anal cancer patients resulting in this greatly reduced quality of life due to the morbidity issues... I just cannot accept the current medical "treatment" of anal cancer.  The only reason I go to all of the consultations is to find doctors that I can connect with just in case I end up not being able to pass stool and have to revisit the idea of surgery.  

If you have had experience with this particular surgery please let me know of your experience privately or on this discussion board (whichever you are more comfortable with).

No one should be having to make these decisions but at this time I will not allow this to be done to me or my family.  

 

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    edited March 2018 #2
    Msmoxie

    Thank you for sharing the information from that article.  I know there are many people who have had APR and I'm sure some of them have an easier time with recovery and life adjustment than others.  I have heard stories of severe complications and extreme effects on quality of life.  I have to wonder why anyone diagnosed with anal cancer with the chance to have it irradicated by chemo/radiation would ever go directly to APR.  This is just my personal opinion.  I know there are cases where the cancer is so far advanced there is no other option, however. 

  • Msmoxie
    Msmoxie Member Posts: 46 Member
    edited March 2018 #3
    mp327 said:

    Msmoxie

    Thank you for sharing the information from that article.  I know there are many people who have had APR and I'm sure some of them have an easier time with recovery and life adjustment than others.  I have heard stories of severe complications and extreme effects on quality of life.  I have to wonder why anyone diagnosed with anal cancer with the chance to have it irradicated by chemo/radiation would ever go directly to APR.  This is just my personal opinion.  I know there are cases where the cancer is so far advanced there is no other option, however. 

    Radical APR

    That is the problem I have... they found multiple cancers late... everything stage 3a at minimum... anal SCC first Dx, then breast cancer Dx, then thyroid and overall if they do to me what they really want to do I would be sliced and diced to death I believe.  I cannot even imagine ... it is far worse than a nightmare.  So at this time, I am only receiving palliative care but continuing with consultations... No one should have to suffer this.  

  • tanda
    tanda Member Posts: 174 Member
    edited March 2018 #4
    MsMoxie

    I realize that you have done alot of research and have given this issue a great deal of thought , One  thing to keep in mind is that surgery is a local treatment; chemo/radiation has a wider range covering the pelvic area and, hopefully trying to catch any stray cells that might migrate to the liver, lungs,etc.

    " Furthermore, patients with significant perineal wound complications after APR for cancer have an increased incidence of local recurrence adversely affecting long-term survival, which may be a direct result of delay in adjuvant therapy.2 "

    I agree with mp327 . Chemo/radiation is not a walk in the park, but eventually you heal and arrive at "a new normal" that is ok

    Everyone experiences side effects differently; for example, I did not have mouth sores, nausea or vomiting (I had 5FU in pill form (Xeloda); my white counts were stable and I was not hospitalized.  However, I had bladder and bowel problems , fatigue  and dehydration. At the end of treatment I was in a basket!  I began to heal slowly and was   mostly ok in a month or two.

     

  • Helen321
    Helen321 Member Posts: 1,460 Member
    #5
    I've had the surgery, I'm

    I've had the surgery, I'm angry so I'm not a good person to ask, I live in a world of depression, suicidal thoughts and despair since my surgery but it's because I'm in my 40s and it took away my ability to have sex or feel normal.  As far as it's related to cancer itself, if you have cancer that won't go away, you'll most likely be fine if you go to a top surgeon.  I had none of those complications mentioned, nor did my friend.  I went to Dr. Guillum at Memorial Sloan.  

    What it does to the psyche and self esteem of a young person trying to date is another story.  But not a fair one for people who are fighting cancer and trying to stay alive.  It would come accross as complety selfish to someone who is fighting for life, as it should.   PM me if you'd like that version and I'd be happy to share it with you.

  • eihtak
    eihtak Member Posts: 1,473 Member
    #6
    Helen321 said:

    I've had the surgery, I'm

    I've had the surgery, I'm angry so I'm not a good person to ask, I live in a world of depression, suicidal thoughts and despair since my surgery but it's because I'm in my 40s and it took away my ability to have sex or feel normal.  As far as it's related to cancer itself, if you have cancer that won't go away, you'll most likely be fine if you go to a top surgeon.  I had none of those complications mentioned, nor did my friend.  I went to Dr. Guillum at Memorial Sloan.  

    What it does to the psyche and self esteem of a young person trying to date is another story.  But not a fair one for people who are fighting cancer and trying to stay alive.  It would come accross as complety selfish to someone who is fighting for life, as it should.   PM me if you'd like that version and I'd be happy to share it with you.

    Helen321...

    Hi, 

    I am so sorry for the place this whole ordeal has left you in. I too have an ostomy (as part of my treatment for anal cancer stage 3b)...I had the surgery with the intention of reversal once healed but the pelvic/anal radiation damage made the potential for a successful reversal limited, so it is now permanent (7 years). I am a little older than you but had the surgery at 52 years old.

    I have been lucky to maintain an active happy lifestyle with my ostomy, but admit to a period of adjustment where I questioned that possibility. I found great help in joining both an on line and in person support group with others who have an ostomy. I think it is vital to talk to people who can relate to such a personl issue. We discuss tips on diet, exercise, clothing, intimacy, and much more...nothing is really off topic.

    It may be of help to connect with UOAA (United Ostomy Association of America) and they will help you find a group in your area. There are also other on line groups such as https://www.inspire.com/  with ostomy links. 

    Self esteem is tough to build when dealing with a life changing issue such as this, but with help from others in the same boat, it can be done.

    I will keep you in my thoughts for better days ahead!

    katheryn

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #7
    Dear Friends,

    Although for rectal cancer I had APR almost 5 years ago. Happy to report that even though having a colostomy and several digestive issues, this surgery haven’t keot me from living a great life. I work full time, have a very active dating life, travel anywhere I want to. 

    Sure I have to watch what I eat and make sure that all my health supplies are with me, but I live a great normal life. Without this surgery I’d be dead by now for sure. So I’m greatful. 

    All the best!

  • mp327
    mp327 Member Posts: 4,440 Member
    #8
    Hi Laz!

    How nice it is to hear from you!  I think of you often and wonder how you are doing.  I'm so glad things are going well and that you are living large!  I am so very happy to hear this.  I know you went through a period of adjustment after your surgery, but you seem to have overcome all of that.  That is wonderful.

    I am doing okay.  Trying to keep ahead of my chronic kidney disease and will be most likely be having a colonoscopy in a few months to make my colorectal doctor happy.  Undecided  I am still very physically active, but walk more these days than run.

    I hope you continue to feel good and do the things that bring joy to your life.  You certainly deserve it.  Take good care and keep in touch!

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