Is a colostomy the only option after recurrence?

StruTanToot

I'm five years out from treatment, but still have issues. "Tissue: at AIN 3 are removed with greater frequency. A surgeon mentioned, of course, that a colostomy is the next step.

I've been reading about innumotherapy, plastic/rubbber spinchters, and other developments. If if returns, is there still hope?

mp327

StruTanToot

I'm not sure about this, but I would definitely look into getting a second (or third) opinion.  The University of California San Francisco may have information on their website, so you might want to look at that site.

StruTanToot

mp327 said:

StruTanToot

I'm not sure about this, but I would definitely look into getting a second (or third) opinion.  The University of California San Francisco may have information on their website, so you might want to look at that site.

Thank you for reminding me of

Thank you for reminding me of the University of California at San Francisco. I'll check out the website.

Mollymaude

StruTanToot

You don't have recurrence so far, right? Just thinking "what if"? I kind of don't let myself go there. The thought of colostomy is horrible to me, but of course there are people on this site that have one and cope just fine. 

eihtak

StruTanToot...

Hi,

As suggested please do get another opinion. I think some doctors jump to the idea of an ostomy too quickly yet I wonder if they would do the same for themselves???

That being said, I have an ostomy not as a result of recurrance treatment but rather as part of my initial treatment 7 years ago. I was so very sick at the time and really barely remember discussing the pros, cons, or thinking about a second opinion. However, there were certainly (and still are) a lot of pros during treatment as in that I never had or have to worry about painful bms or accidents. I do way more than "cope" in fact while there are occasional moments where I shake my head and think "ugh, really" I have more where I don't even think of it being there at all. I am lucky and some people have had a much more difficult time with managing their ostomy, I know. You don't need details on something that is only a "what if" but know that it probably isn't near as bad as what you have imagined in your head. For me, I empty the bag in the evening and morning, and depending on my activities and what I eat, it remains an empty flat unnoticeable bag that needs little or no attention most of the day. (More advice if and when the time comes)

Get that second opinion though, and be well....

katheryn

StruTanToot

Mollymaude said:

StruTanToot

You don't have recurrence so far, right? Just thinking "what if"? I kind of don't let myself go there. The thought of colostomy is horrible to me, but of course there are people on this site that have one and cope just fine. 

Thank you. You're right, I

Thank you. You're right, I don't need to give myself something to worry about thinking, "what if?" 

 

StruTanToot

eihtak said:

StruTanToot...

Hi,

As suggested please do get another opinion. I think some doctors jump to the idea of an ostomy too quickly yet I wonder if they would do the same for themselves???

That being said, I have an ostomy not as a result of recurrance treatment but rather as part of my initial treatment 7 years ago. I was so very sick at the time and really barely remember discussing the pros, cons, or thinking about a second opinion. However, there were certainly (and still are) a lot of pros during treatment as in that I never had or have to worry about painful bms or accidents. I do way more than "cope" in fact while there are occasional moments where I shake my head and think "ugh, really" I have more where I don't even think of it being there at all. I am lucky and some people have had a much more difficult time with managing their ostomy, I know. You don't need details on something that is only a "what if" but know that it probably isn't near as bad as what you have imagined in your head. For me, I empty the bag in the evening and morning, and depending on my activities and what I eat, it remains an empty flat unnoticeable bag that needs little or no attention most of the day. (More advice if and when the time comes)

Get that second opinion though, and be well....

katheryn

Thank you Katheryn for

Thank you Katheryn for sharing your story with me. I have enough anxiety in daily life to fear something that hasn't happened yet. You are an inspiration!

 

 

Huskergal

APR with flap reconstruction after cancer reoccurence

 I just found out that my squamous cell anal cancer has returned. I got the news almost 3 years to the day after I finished radiation and chemo therapy for the initial occurrence.  I am facing an APR with flap reconstruction Surgery. Has anyone else gone through this, and if so, tell me realistically what the recovery is like.

eihtak

Huskergal said:

APR with flap reconstruction after cancer reoccurence

 I just found out that my squamous cell anal cancer has returned. I got the news almost 3 years to the day after I finished radiation and chemo therapy for the initial occurrence.  I am facing an APR with flap reconstruction Surgery. Has anyone else gone through this, and if so, tell me realistically what the recovery is like.

Huskergal...

Hi, I am so sorry you are now facing this new challenge. While I do have an ostomy, it was prior to my initial treatment and originally intended to be reversed, but severe radiation damage complications put an end to that plan. (That was almost 7yrs ago now) There are different kinds of ostomies and mine is what is called a loop ostomy. In this procedure the anus and rectum are left in place but cut off more or less from the colon...so out of commission. I did have some healing time from this surgery and a bit of adjustment time to the ostomy in general but since my surgery was less involved I can not really answer your question. Also, shortly after surgery I began my chemo/rad treatment and "fortunately" now a bit of a blur!

From what I've heard from others though, the typical APR (which involves removal of anus and rectal stump) surgery healing time is in the area of several weeks, but like anything, we all heal at different paces. I would imagine it may also depend on the condition of your skin from prior radiation. On the bright side, not everyone has flap reconstruction, and I have heard good things about infection prevention in the wound site when going that route.

There are likely more rectal cancer survivors (vs anal) that have underwent APR so I may suggest reading through some posts on the colorectal forum as well as type abdominoperineal resection in the "search content" area at the upper right of this page, yet come back here too because there are some differences between the two cancers.

I wish you well as you take this step...I know it can be a scarey one, but you will get through it, and we will be here to support you as you do. Please stay in touch as you learn more and move forward.

katheryn

 

Mollymaude

Huskergal

I have not had APR but just wanted to let you know you have a lot of support on this site. So sorry you have to go through this.Please let us know how you are doing. I will be thinking of you.

swood9008

Huskergal said:

APR with flap reconstruction after cancer reoccurence

 I just found out that my squamous cell anal cancer has returned. I got the news almost 3 years to the day after I finished radiation and chemo therapy for the initial occurrence.  I am facing an APR with flap reconstruction Surgery. Has anyone else gone through this, and if so, tell me realistically what the recovery is like.

My mom is one yr out of her

My mom is one yr out of her recurrancar and had this exact procedure. I was so scared for the future, it took about 6 month for recovery, she is a yr out and doing pretty well, has her good days and bad (mostly good) good luck 

Ouch_Ouch_Ouch

A possible alternative....

Meorial Sloan Kettering Cancer Center in NYC is running this study - "A Phase I Study of High-Dose-Rate Brachytherapy plus Chemotherapy in Patients with Recurrent Rectal or Anal Cancer".

 

"Purpose

Rectal and anal cancers that have come back after external beam radiation therapy are usually treated with a big surgery that involves the creation of a colostomy (bag worn outside the body to collect waste). However, not all patients can have or want this surgery. Brachytherapy (the placement of a radioactive source in or near cancer tissue) is an alternative treatment for these patients. High-dose-rate brachytherapy uses a higher dose of radiation than conventional brachytherapy (which doesn’t always work to prevent cancer recurrence), but doctors are not certain how high a dose can be safely used.

The purpose of this study is to find the highest dose of radiation that can be used in high-dose-rate brachytherapy without causing too many side effects in patients with rectal or anal cancer that has returned after external beam radiation therapy. Patients will also receive chemotherapy (either orally, as capecitabine, or intravenously, as 5-fluorouracil)."

   

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

mp327

Ouch_Ouch_Ouch said:

A possible alternative....

Meorial Sloan Kettering Cancer Center in NYC is running this study - "A Phase I Study of High-Dose-Rate Brachytherapy plus Chemotherapy in Patients with Recurrent Rectal or Anal Cancer".

 

"Purpose

Rectal and anal cancers that have come back after external beam radiation therapy are usually treated with a big surgery that involves the creation of a colostomy (bag worn outside the body to collect waste). However, not all patients can have or want this surgery. Brachytherapy (the placement of a radioactive source in or near cancer tissue) is an alternative treatment for these patients. High-dose-rate brachytherapy uses a higher dose of radiation than conventional brachytherapy (which doesn’t always work to prevent cancer recurrence), but doctors are not certain how high a dose can be safely used.

The purpose of this study is to find the highest dose of radiation that can be used in high-dose-rate brachytherapy without causing too many side effects in patients with rectal or anal cancer that has returned after external beam radiation therapy. Patients will also receive chemotherapy (either orally, as capecitabine, or intravenously, as 5-fluorouracil)."

   

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

Ouch

Thanks for posting this!  I hope the results of this study will be positive!  I have missed seeing you on here--I hope all is well!

Ouch_Ouch_Ouch

mp327 said:

Ouch

Thanks for posting this!  I hope the results of this study will be positive!  I have missed seeing you on here--I hope all is well!

Running since 2014.

Greetings, mp237 - The study has been posted on the MSKCC website since at least 2014, so if they were getting extremely negative results, I think it would have been shut down by now. So, fingers crossed!