Straight to surgery?

adkspinner
adkspinner Member Posts: 4
in Anal Cancer #1

I was just diagnosed with stage IIIB. I’ve been reading about the initial treatment consisting of chemoradiation using 5FU and Mitomycin (Nigro Protocol) and the side effects. Of course, if the treatments don’t get it all surgery is usually the next option. Has anyone else had thoughts of going straight to the surgical option? I’m taking strong pain meds and the digital exams have been brutal. Treatment hasn’t even started yet! I may start kicking and running if anyone approaches me while donning a glove! I have a 5.5cm tumor with inguinal node involvement. I am not put off or afraid of a colostomy. My treatments will begin soon so I have to make a decision. Just wondering if anyone else has thought of or actually decided on skipping “phase 1” and opted for surgery.

Comments

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited March 2018 #2
    adkspinner...

    Welcome, yet I am very sorry to have to say that here. On the plus side, this forum is filled with others who have been in your shoes one way or another and have unending support and advice to share along the way.

    7 plus years ago I was dx at the same stage as yourself. (3b with pelvic lymph node involvement) My medical team who are highly respected in this area collaborated and reccommended ostomy surgery (prior to) but including the protocal chemo / radiation treatment. My colostomy was done in a way that would enable a potential reversal once healed, but in my case the scarring left from radiation was too severe and a successful reversal did not happen. After a time of adjustment I am living a happy and very active life with my now permanent ostomy with little regret.

    The advantage of having surgery "before" the radiation is that I was spared the painful bm's on extremely sore and burned tissue especially in the midst of treatment, as well as healing issues on radiated and scarred areas that may be a problem if I had done chemo/radiation "first" and then later found I still needed surgery.

    I did however have a recurrance of my anal cancer with mets to my lung 3 years ago that thankfully was successfully treated with surgery and another course of chemo.

    These are tough decisions to make, I know, and no one can completely predict the outcome as we all react different to the same treatment. I will keep you in my thoughts and prayers that whatever decision you make gives you the best and healthiest future!

    katheryn

  • Scubajoe
    Scubajoe Member Posts: 39 Member
    #3
    I recently went the chemo and

    I recently went the chemo and radiation route.  At stage lllB is the lymph node involvement?  If so chemo and radiation can eliminate cancer in that area.  I am not sure how well surgery can remove it all.  I am currently waiting on a biopsy at three months and even if surgery is needed still I think there is benefit from the chemo and radiation.  Also there is the pain and side effects of the chemo and radiation.  Prognosis just with chemo and radiation is quite good.  I am sorry I don't have more information regarding your choice.  I am sure it is a difficult one.  I can tell you three months after I feel pretty great and am back to all my normal activities.  Bowels are not perfect and may never be but it's something I can deal with now and hopefully will get better.  Definitely worth the treatment especially if I get good news on the biopsy.  Wishing you the best. 

    Joe

  • Jane s
    Jane s Member Posts: 77 Member
    edited March 2018 #4
    Radiation works better

    My doctor told me that radiation has been the standard treatment for anal cancer for 50 years because it works better than surgery.   Yes,  the treatment is rough and there is pain,  but it gets better and you heal,  and you still have all your parts.   Talk to your doctor though,  it's often the surgeon who makes the call as to what is the best treatment option.   

  • Jane s
    Jane s Member Posts: 77 Member
    #5
    Also

    I was also 3b, my tumor was 7cm, and I'm a huge wimp when it comes to pain.   If I can get through it,  anyone can. .

  • mp327
    mp327 Member Posts: 4,440 Member
    #6
    adkspinner

    When I was diagnosed, my first thought was having to have a colostomy.  I was very relieved to know that that would not be the first line of treatment.  This is just my opinion, but I would not have a colostomy unless and until I had tried radiation and chemo and it had failed.

  • tanda
    tanda Member Posts: 174 Member
    edited March 2018 #7
    adkspinner

    I am not sure, but I suspect, that even if you had surgery first, chemo/radiation might still be suggested.  Surgery is a local treatment...unless a tumour is completely encapsulated, radiation and sometimes chemo are recommended to  "sterilize the area" ;  this is especially important if any nodes are positive.  All three treatments are an attempt to erradicate any stray cells and prevent them from travelling to major organs.

  • adkspinner
    adkspinner Member Posts: 4
    #8
    Thank you

    Thanks for the wise advice. I’ve had burns in that neighborhood from gynecological VIN laser surgery. Might have been better if I didn’t know what was coming. The new talk of cutting all prescriptions of opioids is not helping. Fortunately, at this point it’s just talk.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #9
    Opioids

    I don't think opioids will be restricted in cancer treatment. I found my doctors almost over generous in their willingness to prescribe these. My doctor was kind of appalled at how much Tylenol and ibuprofen I had been using and immediately put me on tramadol which didn't work. The next step was oxycodone which did work. He also gave a schedule to follow to taper off after treatment which Took the guesswork out of tapering off on my own.

  • Msmoxie
    Msmoxie Member Posts: 46 Member
    edited March 2018 #10
    PALLIATIVE CARE ONLY

    My personal choice because I have anal cancer and breast cancer ... both found late stage this past August/October.  I have now lost tweny seven friends and family to cancer treatments in the past ten years and the side effects immediately drain them of their energy and start them on a path of being in the hospital more than out.  Thankfully I have my primary doctor and my radiation oncologist (he was assigned but knows I will not accept the chemo or radiation).  After thoroughly discussing my extremely poor circulation ... esp. in my lower legs, my thyroid problems, my hypersensitivity to even common drugs like Tylenol, Ibuprofen, seizures from Tramadol, zero tolerance for lidocaine and the list goes on... I cannot even imagine the problems I would have with the chemo drugs.  The collateral damage from the radiation treatments is TOO extensive and unacceptable to me.  Not only my personal exposure to friends and family undergoing these radiation treatments and their side effects but then also reading the "survivors" blogs... the medical community MUST come up with safer, better solutions.  Their current standard protocol is completely unacceptable to me.  I am only sixty years young... I am one of the few people I see here that is taking the truly alternative route and not going with their current recommendations.  I have a consultation coming up the Memorial Sloane Kettering... My only side effect right now is the fecal incontinence from the tumors being right on my sphincters... although it creates constant mess and constant clean up I am okay with doing that (especially seeing that even after all of the chemo/radiation and surgeries... it is typical to still have the incontinence issues ... or an ostomy).   There are absolutely NO easy decisions here.  I am willing to see what I can do to LIVE with these cancers.  I've had a very good life overall but have definitely had a lot of trauma so I don't expect to live to one hundred anyway.  I just want my QUALITY OF LIFE to be optimal for as long as possible ... that is my personal choice every day.  

     

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #11
    Msmoxie said:

    PALLIATIVE CARE ONLY

    My personal choice because I have anal cancer and breast cancer ... both found late stage this past August/October.  I have now lost tweny seven friends and family to cancer treatments in the past ten years and the side effects immediately drain them of their energy and start them on a path of being in the hospital more than out.  Thankfully I have my primary doctor and my radiation oncologist (he was assigned but knows I will not accept the chemo or radiation).  After thoroughly discussing my extremely poor circulation ... esp. in my lower legs, my thyroid problems, my hypersensitivity to even common drugs like Tylenol, Ibuprofen, seizures from Tramadol, zero tolerance for lidocaine and the list goes on... I cannot even imagine the problems I would have with the chemo drugs.  The collateral damage from the radiation treatments is TOO extensive and unacceptable to me.  Not only my personal exposure to friends and family undergoing these radiation treatments and their side effects but then also reading the "survivors" blogs... the medical community MUST come up with safer, better solutions.  Their current standard protocol is completely unacceptable to me.  I am only sixty years young... I am one of the few people I see here that is taking the truly alternative route and not going with their current recommendations.  I have a consultation coming up the Memorial Sloane Kettering... My only side effect right now is the fecal incontinence from the tumors being right on my sphincters... although it creates constant mess and constant clean up I am okay with doing that (especially seeing that even after all of the chemo/radiation and surgeries... it is typical to still have the incontinence issues ... or an ostomy).   There are absolutely NO easy decisions here.  I am willing to see what I can do to LIVE with these cancers.  I've had a very good life overall but have definitely had a lot of trauma so I don't expect to live to one hundred anyway.  I just want my QUALITY OF LIFE to be optimal for as long as possible ... that is my personal choice every day.  

     

    Greetings ---

    When you were at MSKCC, did they discuss this clinical trial with you? If so, what did they say about it? Would you have qualified if you'd wanted to enter the study? Thank you for the information. I hope things are going along for you just as you wanted.

    "A Phase I, Dose Escalation Trial of Endoluminal High-Dose-Rate Brachytherapy with Concurrent Chemotherapy for Rectal or Anal Cancer in Patients with Recurrent Disease or Undergoing Non-Operative Management"

    https://www.mskcc.org/cancer-care/clinical-trials/14-104

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