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If Anal Cancer Returns

Chris Ptown's picture
Chris Ptown
Posts: 93
Joined: Oct 2011

Hello Everybody!

I have a question.  I was talking to a man who also had Stage 2 Anal Cancer like myself that lives in my town.  We were both saying how we are in complete remission and how we are feeling etc.  I then said to him that if the Anal Cancer ever came back they would catch it early since we get checked and just do chemo and radiation again.  He said that he was told by his doctor that they never do radiation and chemo a second time and if Anal Cancer comes back you have to get a colostomy bag.  Is this true?

Thanks for anyone that knows the answer and I wish you all the best.

 

 

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I know you want the truth, so here goes.  It is unlikely that chemo/radiation would be done in the case of recurrence.  Most, if not all of us, have gotten the maximum or close to maximum amount of radiation to our pelvic regions during the initial treatment.  I believe that 59-60 gys is the maximum lifetime amount.  Since there have been no other treatments for recurrence discovered, at least to my knowledge, APR surgery (abdominoperineal resection) is the standard protocol.  This is major surgery which involves removing the anus, rectum and lower portion of the colon, and making a stoma in the lower left abdomen to which a colostomy bag is attached. 

 

I think this is my biggest fear in life--having to someday live with a colostomy.  However, I know many people have them and live pretty normal lives with them.  There are members on this board who have them and I'm sure they will agree with that.  My hope for you, myself, and any of us who have not had to cross that bridge is that we never have to.  Try not to think about it, as I think many of us have beaten this disease and will never have to undergo additional treatment or surgery.  And who knows, perhaps some day initial treatment for anal cancer will be much less brutal and so will treatment for any recurrence.  I hope you are doing well!

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

I am glad you brought MY scariest thoughts out in the open.  Although I know (personally) several people with the bag and they assure me aftera you have it awhile it's really no big deal, I still find it scarey.  But so was chemo and radiation.......  Lorie

Clovergirl
Posts: 47
Joined: Dec 2012

though no one wants to have a colostomy, I can tell you I know numerous people that are very close to me that have them and live quite normally.  My cousin has had a colostomy bag since she was 24.  She had 3 children after that.  I also have several good friends that have had to get them over the years and they all work, exercise, etc... though it is of course a big change to a new "normal", they do well.

Marynb
Posts: 1134
Joined: Aug 2012

Hi. Is there a lifetime maximum of radiation for the body? If so, i will bet I have exceeded it long ago. I have had 2 cancers , so many scans, etc. I would have no way of keeping track of all the radiation exposure I have had in my life, but it has been quite a lot. I am thinking that maybe that figures in on the decision of my docs not to do scans .

mxperry220
Posts: 358
Joined: Mar 2011

My primary care doctor told me if the anal cancer came back that I had all the radiation in the anal area I could have.  Martha is correct surgery would be the only option with a colostomy bag.

Mike

Angela_K
Posts: 370
Joined: Jan 2011

God forbid it to ever return, but if it did, I'm hoping it's 20 years from now where science and medicine have perhaps progressed enough to have more favorable options!  And Clovergirl is right. I know a lot of others who live with a colostomy very well.  One is a triathlete.  I suppose there are far worse things.

In the meantime, here's to you, Chris, being cancer free!

Angela

sandysp's picture
sandysp
Posts: 754
Joined: May 2011

My doctor at MSK could literally "cut me a NEW *******!" He is an expert in reconstructive anal rectal surgery. He is a superstar. Dr. Weiser. I know I am in good hands if that day ever came. Before you have surgery, make sure you get someone who can reconstruct if you decide to do that rather than the bag. Angela is right - if it does happen, at least it's not yet. Advancements are being made. All the best, Sandy

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I would love to know more about that surgery your Dr. Weiser can do!

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

Sandy, I looked him up on the internet and read about him.  He sounds like a very brilliant surgeon.  I have saved his website on my computer in the event I or anyone else needs to know about him.  Thank you for mentioning his name!

Kashi1
Posts: 1
Joined: Oct 2013

Sandy

I am going with my sister tomorrow to a consultation with the surgeon and her medical oncologist. She completed the Nigro protocol, but a learned of a positive biopsy from a lump removed in the anal margin area yesterday.  My best guess is that they will recommend colostomy. I want to make sure we not only get a 2nd opinion; but if she gets this surgery (she is only 41, with 2 little girls), that she get the best surgeon and surgery choices possible. Can you please give me information about the surgeon you recommend, and anything you have heard about this reconstructive surgery?

 

Phoebesnow
Posts: 447
Joined: Apr 2011

Try the colorectal board, list your city and state and maybe hospital.  Maybe someone here can help to.  Sorry to hear about the bad news.

eihtak
Posts: 822
Joined: Oct 2011

Hi, glad you are doing well at this point! As far as the colostomy goes, I am one of those people living a full and active life with said bag after anal cancer. I was diagnosed at Stage3b and had the surgery at the start of treatment. There are several different kinds of ostomies. Mine was intended to be reversed so is what is called a loop colostomy and my anus and rectum was left in place. Due to radiation damage the reversal has not yet been possible, and most likely never will. My doc said as others that in case of recurrance I had probably had the max radiation to pelvic area. He did mention possible chemo though as recurrance is not always in the anal area. In my case, a surgery to remove the anus would also be involved, which frankly I wish had been done with my original surgery now. I would hate to think that anyone is spending their time in recovery worrying too much about the what ifs.....some bridges need only to be crossed when/if you get to them. If you should ever need this surgery, TRUST me, my life is full and I am healthy and active. There is an adjustment period and and some minor changes to make, (I've had my colostomy almost 2yrs now), but like all things new to us, once you learn, its really not all that big of a deal. I used to obsess about it in the beginning, but now I have decided that everyone poops one way or another and most do not discuss it with other people, so outside of my support groups and close friends/family the topic never comes up. Most people don't even know I have it. I think those who don't know about ostomies think its much worse than it is. It's not like I have poop in the bag all day, actually depending on what and when I eat I can leave the bag off for 5-6 hrs and just cover the stoma (opening) with a large bandage. People with bags still are physically active, swim, exercise, have sex, ect. In my case it is totally manageable as long as I keep to a diet plan that works for me, and if I don't, its just a matter of emptying the bag more often. Some people recovering from pelvic radiation have to deal with painful bm's and urgency, from this I have been spared! Anyways...just want all to know, although I pray you will never have to make this adjustment, if you find yourself crossing that bridge, do not be afraid.

Sandy....

I have heard of some successful reconstuction from a doctor in Milwaukee but as in all surgery a lot of factors come in to play. A lot depends on the level of internal damage to surrounding areas from radiation. I'd love any info you have.

 

Hoping all are blessed with health in this new year!

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I totally appreciate your comments!  As one who does not dwell on the what-ifs, I have to confess that once in awhile I find myself going there.  It's always good to hear from someone who has had to take that route and is doing very well.  But as you say, many factors enter the picture for each person as an individual.  I am just very glad to hear that you are doing so well and that life is good!

debrossi
Posts: 5
Joined: Jan 2013

Hi Sandy

 

I am 5 weeks out of having surgery to remove my cancer regrowth and this has resulted in me have a bag and my anus and rectum were removed also.  I guess my biggest issue is that I feel like a freak.  I feel like I will never get used to this massive change in my life.  I'm married and have been for 25 years and my husband is amazing.  He loves me no matter what I look like but part of me wouldn't blame him for finding someone normal.  I can't even imagine having sex again.  They took the back wall of my vagina as well so the flap they have put on my bum doubles as the vaginal wall as well which is pretty hideous.  I guess I just can't believe this is forever.  Sorry to be so down but I don't know how i will get used to this.  You sound like you have such a great attitude and I admire you for that.  I have been holding it all together for everyone around me so no one really knows how I'm feeling.

Debbie

 

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I don't have a colostomy so perhaps I don't know what I'm talking about, but here goes.  Many people with ostomies learn to irrigate them, which allows them to go without the bag for a certain period of time.  I'm just thinking that for something like a sex life, this might be the way to go (or not to go, as it were).  I know of someone who has gotten quite good at irrigating her ostomy and it only requires covering with a small patch.  A good ostomy nurse should be helpful with this.  Also, there are online ostomy support groups and perhaps even videos on how to do this.  If you don't already belong to a support group, I would highly recommend it.  There's nothing like the wisdom and experience of someone else who is living with one to help you work through your issues.  I'm glad you have such a loving husband who is there for you, no matter what.  Take care.

debrossi
Posts: 5
Joined: Jan 2013

Thank you so much for your replies.  I do have a lovely ostomy nurse who has been great but I wasn't even thinking about going down the irrigation track but now I think I will.  I will also look for a support group because I think finding people who know exactly how you are feeling is important.  I live in Australia and I know there are lots of support groups I just have get myself motivated and go.  I will definately do this.  Thanks for your responses, when I read my post back I think I was having a really bad day, quite embarrassing haha. 

Thanks again for being so caring and taking the time to reply to me.

Debbie

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

You are entitled to a bad day!  Please don't apologize.  I'm glad you will be looking for a support group and I hope you'll find it very helpful.  Please keep us posted on how things are!

eihtak
Posts: 822
Joined: Oct 2011

Hi, first off take a deep breath and try to relax, and God knows that is much easier said than done.You will get through this adjustment but will need time. I am 2.5 years post treatment and have had my colostomy since starting chemo/rad. I did not have the rectal anal removal at the time but in case of recurrance most likely would. Some people refer to what you have as a "barbie butt." You are most definately not a freak and don't let your mind go there. I have been married almost 30yrs and my husband though trys to be understanding has never really taken the time to educate himself on the whole ostomy thing. It would have been much harder for me without the help of some support groups. This is one area I feel you NEED to talk and share with others in the same boat. I go to one ostomy group in person that meets at a nearby hospital but also there is a good one on line.  C3life  You will find all ages, men and women, and advice on eating, clothing, health concerns, sex and romance, humor, etc. Also VERY helpful a "stoma" nurse. Not all areas have them but there should be one that you can connect with on occasion. They are trained to deal specificly with ostomy issues of all sorts. Martha was right about irrigating, I don't do this but a man in my group does and can go about 2 days with no bag, a nurse can teach you how but would want you to be completely healed before starting. It took me several months of trial and error with different foods and also times of day that I eat, but I manage to empty my bag after breakfast now and often go most of the day with no output. I am able to make adjustments depending on what I have planned for the day. It took me a while to realize that other people didn't even know or for that matter need to know that I even had an ostomy. In the beginning I felt like I always had to explain things and got so frustrated that no one knew how I felt or what I was talking about, but than it hit me, just like cancer, they can't "really know so why waste my energy trying.....thus the need for an ostomy support group. Well, please keep in touch and give yourself some more time, you will be ok with this, trust me. Oh, almost forgot....the UOAA United Ostomy Association of America is a GREAT support group and will connect you with programs close to wherever you live. Check them out also.

Chris Ptown's picture
Chris Ptown
Posts: 93
Joined: Oct 2011

Thank you all for sharing your experiences with me.  I am thankful I am cancer free and would have never even thought about the "what if's" if that conversation hadn't occurred with the guy who lives in my town.  I am not going to dwell on it anymore and if it happens, we deal as some of you have so bravely done.  I don't come on this board much anymore but I want you all to know that I will never forget any of you for helping me during my treatments.  It was so difficult for me added with the fact that my mum was dying at the same time as my treatments.  You all are so supportive and loving.  I thank you from the bottom of my heart.

Chris

mp327's picture
mp327
Posts: 2856
Joined: Jan 2010

I am so glad you are not going to worry about the what-ifs.  Live in the moment, my friend--life is good!

Phoebesnow
Posts: 447
Joined: Apr 2011

I saw your post, sorry to hear your sad news.

 

Many people on the colorectal border have this surgery.  Please let them know your city and state. Maybe someone here can help.

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