Biopsy results

Adam26

Not great news, unfortunately.

The results show a few cancer cells remaining. We're talking minimetres. 

Mum has to have her anal sphincter out in a curative operation to remove the tumour. There will be margins etc.

Right now we're all shocked and devastated. Oh an mum will have to wear one of those bags for the rest of her life.

 

Can anyone please, please share with me some positive stories about people who have had these operations and survived? I'm so upset and I don't even have it.

Cazz

Oh Adam

and Carole, I am so sorry to hear this, I really thought that your Mum had beaten it and she was happily on her way to Spain by now.  I know it sounds devastating, and it hasn't happened to me - yet, so I shouldn't talk - but there are many people on this site who are living very full lives with a colostomy.  Over on the Colo-Rectal site, some people even said it was a blessing as it ended months or years of pain and bowel issues.  Not what you want to hear right now, I know, but please give your Mum a big hug and try and convince her that its not the end of the world.  I am sure you will hear from others who are living with a colostomy and hopefully they will reassure you and Carole that its worth it to get rid of those few remaining cancer cells and life will go on.

My heart goes out to you.

Carol

Adam26

Hi Carole,
Thanks for your

Hi Carole,

Thanks for your reply. I looked on google and it's actually called a Stoma bag.

I looked on the google images and I'm heartbroken.

mxperry220

Stage 1

I read in a previous post you said your mother was Stage 1.   If she was Stage 1 or 2 this should have indicated her cancer had not spread beyond the original tumor site.  You might consider getting a second opinion before deciding definitely on the colostomy.

Mike

mp327

Hi Adam

I checked in on this site today and was so heartbroken to read your post.  I am so sorry that the news was not better for your Mom and I can understand how devastated you both must be feeling right now.  First of all, please tell your Mom that she is in my thoughts and prayers and I'm sorry that all of my positive thoughts, wishes and prayers were not enough.  Secondly, please, please if she has time on her side, get a second opinion before she undergoes this recommended surgery.  Even if that turns out to be the only option, getting a second opinion will at least reassure both of you that you left nothing on the table and can be at peace with this.  Thirdly, and most importantly, I think the suggestions given here already about checking in with people on the colorectal board who are living with colostomies is an excellent idea.  There will be no better wisdom and advice than that coming from those who deal with this in their lives each and every day.  I can only imagine your fears, but I think hearing from those who live with ostomies and have moved on with their lives in normal fashion would help allay some of your worries.  I don't know how it's done in your country, but in the U.S., people who are getting ready to have this surgery are referred to a stoma nurse or specialist who can be very helpful and educate them in advance as to what to expect and how to deal with issues arising from the stoma.  Hopefully, that happens in your country too.

I know some of our fellow posters who have ostomies will have some good advice for you.  In the meantime, please know that both you and your Mom are in my prayers.  I know this is an overwhelming time for you both, but you will get through it.

Martha

Adam26

Second opinion

Hi guys, thanks for your replies.

 

Could you please tell me what would be the benefit of getting a second opinion and on what? I ask because from what was said today! there is basically a small clump of cells there that need to be removed and are on the anal sphincter. If they give her more chemo-radiation that will render her incontinent and it will "leak out".

 

The only thing I can think of is that being 9'months post-treatment, maybe the chemo radiotherapy is still working? 

Phoebesnow

mp327 said:

Hi Adam

I checked in on this site today and was so heartbroken to read your post.  I am so sorry that the news was not better for your Mom and I can understand how devastated you both must be feeling right now.  First of all, please tell your Mom that she is in my thoughts and prayers and I'm sorry that all of my positive thoughts, wishes and prayers were not enough.  Secondly, please, please if she has time on her side, get a second opinion before she undergoes this recommended surgery.  Even if that turns out to be the only option, getting a second opinion will at least reassure both of you that you left nothing on the table and can be at peace with this.  Thirdly, and most importantly, I think the suggestions given here already about checking in with people on the colorectal board who are living with colostomies is an excellent idea.  There will be no better wisdom and advice than that coming from those who deal with this in their lives each and every day.  I can only imagine your fears, but I think hearing from those who live with ostomies and have moved on with their lives in normal fashion would help allay some of your worries.  I don't know how it's done in your country, but in the U.S., people who are getting ready to have this surgery are referred to a stoma nurse or specialist who can be very helpful and educate them in advance as to what to expect and how to deal with issues arising from the stoma.  Hopefully, that happens in your country too.

I know some of our fellow posters who have ostomies will have some good advice for you.  In the meantime, please know that both you and your Mom are in my prayers.  I know this is an overwhelming time for you both, but you will get through it.

Martha

Bad news

So sorry to hear of this devastating outcome.  I am reeling from the shock.  You never expect this from a stage one dx.  

I have no words to describe the depth of my empathy.

My husband has had a colostomy bag since he was 17.  It is manageable.  

 

Did your Mom have the standard nigro protocol?  Radiation plus two weeks of 5 FU and two infusions of MITOMYCIN?  Did she have any breaks?  I'm asking for the future people, some treatments use different chemos or omit the second round of mitomycin.

My doctor tried to omit the second round of mitomycin but I would not let him because my second opinion doctor said it was essential.

mxperry220

Adam26 said:

Second opinion

Hi guys, thanks for your replies.

 

Could you please tell me what would be the benefit of getting a second opinion and on what? I ask because from what was said today! there is basically a small clump of cells there that need to be removed and are on the anal sphincter. If they give her more chemo-radiation that will render her incontinent and it will "leak out".

 

The only thing I can think of is that being 9'months post-treatment, maybe the chemo radiotherapy is still working? 

Second Opinion

Perhaps another doctor might have a different recommendation for treatment.  Did your mother's doctor advise that more chemo-radiation would render her incontinent?  If her doctor did this would be why I would want another doctor's opinion confirming the original doctor's diagnosis.  My tumor was on my anal spincter.  My colorectal surgeon sugincally removed 1/3 of the tumor and the remainder was removed via chemo-radiation. I was diagnosed as Stage 2.

Mike

Adam26

Phoebesnow said:

Bad news

So sorry to hear of this devastating outcome.  I am reeling from the shock.  You never expect this from a stage one dx.  

I have no words to describe the depth of my empathy.

My husband has had a colostomy bag since he was 17.  It is manageable.  

 

Did your Mom have the standard nigro protocol?  Radiation plus two weeks of 5 FU and two infusions of MITOMYCIN?  Did she have any breaks?  I'm asking for the future people, some treatments use different chemos or omit the second round of mitomycin.

My doctor tried to omit the second round of mitomycin but I would not let him because my second opinion doctor said it was essential.

Hi Phoebe,
I'm not too sure

Hi Phoebe,

I'm not too sure to be honest. I think it was just standard protocol what they have here in the U.K, but I think it was the same dosage for the whole period of treatment.

How does your husband cope with it? I really need to feed back positives as my mum and me are so depressed now.

Adam26

mxperry220 said:

Second Opinion

Perhaps another doctor might have a different recommendation for treatment.  Did your mother's doctor advise that more chemo-radiation would render her incontinent?  If her doctor did this would be why I would want another doctor's opinion confirming the original doctor's diagnosis.  My tumor was on my anal spincter.  My colorectal surgeon sugincally removed 1/3 of the tumor and the remainder was removed via chemo-radiation. I was diagnosed as Stage 2.

Mike

Hi Mike, yes that was what he

Hi Mike, yes that was what he said, he said any more chemoradiotherapy would be too much for the sphincter and she'd be incontinent.

 

May I ask why you had yours surgically removed, Mike? We are definitely going to take your advice and ask for a second opinion although to be honest, we've all resigned ourselves to this op now.

 

One last question. When they removed a third of it surgically and used chemoradiotheraphy on the rest, was that their first method of treatment, or was it a plan B like ours would be? And did you have the op first or the chemoradioation?

 

Thanks for your help.

jcruz

Adam26 said:

Hi Mike, yes that was what he

Hi Mike, yes that was what he said, he said any more chemoradiotherapy would be too much for the sphincter and she'd be incontinent.

 

May I ask why you had yours surgically removed, Mike? We are definitely going to take your advice and ask for a second opinion although to be honest, we've all resigned ourselves to this op now.

 

One last question. When they removed a third of it surgically and used chemoradiotheraphy on the rest, was that their first method of treatment, or was it a plan B like ours would be? And did you have the op first or the chemoradioation?

 

Thanks for your help.

Adam

Adam

I am so sorry that your mother and you are facing this huge hurdle now.

I agree with getting a second opinion.  I would want to do that just to make sure I had as much information as I could get.

Regarding surgery to remove part of the tumor: For me, at the time my surgeon did a biopsy, he removed what he safely could without damaging the anal sphincter.  So that was prior to the chemo and radiation.  I had 7 weeks of radiation and chemo in the 1st and 6th week.

Regarding colostomy: My brother has had a bag for over 20 years because of damage caused by Crohn's disease.  He has been active in both in-person and online ostomy support groups which he says are very helpful.  He also says ostomy nurses are angels.

Janet

swood9008

So sorry to hear adam and

So sorry to hear adam and carole, I don't know much about all of this just what I've seen on here, but I agree with a second opinion. Stay strong were all here for you!

loveyouall

swood9008 said:

So sorry to hear adam and

So sorry to hear adam and carole, I don't know much about all of this just what I've seen on here, but I agree with a second opinion. Stay strong were all here for you!

Your mom will be ok!!

Adam - I know this is scary at the moment and i am sorry that this is the situation... but if your mom indeed needs surgery my mom had surgery too! My mom will be 80 years young in January and had her surgery (permanent colostomy) for recurrent anal cancer in January of 2015. Let me tell you what my mom and I did this evening and this is typical I live in the hustle and bustle of NYC in Manhattan , my mom lives in the Bronx and I work in Brooklyn. Mind you loads of chaos to get from point A to B to C. My mom drove this evening from the Bronx, through Manhattan (at rush hour) to Brooklyn to pick me up and to drive out for a nice Italian meal of pasta and wine. My mom then drove me home to Manhattan and she dove to the Bronx and went grocery shopping before he got home. What??? Really?? Absolutely! Mom is heading out in August thousands of miles away to the Pacific coast to meet my sister so they can travel around. Then in November she is off to Cuba to play Jazz piano and have other musicians play her compositions. Yep! She plays piano gigs in NYC, teaches jazz piano, plays in a quartet etc etc etc . I am telling you this because it is very doable and life does go back to normal. My mom is 100% and her surgeon just dismissed her for excellent healing. She most likely had more surgery than your mom will need. Yes it takes time to heal, but she will heal every day. Yes it takes a little time to get use to the colostomy but very doable and she will know what is going on with in less than 1 week . She should go at her own pace BUT my mom is doing great. I would say it took her 12 weeks before she felt really good but again my mom will be 80 years old (you wouldn't know it before surgery and you wouldn't know it now). Get the help that she may need for a few weeks after surgery (an aide if need be). Every day she will get better guaranteed. I know it is hard now but when you are ready and are past the initial shock a positive mental attitude goes a very long way in healing (my mom told me to say that!). My mom is doing great, and so will yours! Hugs to you and your mom. She will get through this and so will you (of course I was with my mom during this time of surgery and healing but now we don't really even think much about it!). It is worth it Any questions you have I am happy to answer for you!

Suzanne

mxperry220

Adam26 said:

Hi Mike, yes that was what he

Hi Mike, yes that was what he said, he said any more chemoradiotherapy would be too much for the sphincter and she'd be incontinent.

 

May I ask why you had yours surgically removed, Mike? We are definitely going to take your advice and ask for a second opinion although to be honest, we've all resigned ourselves to this op now.

 

One last question. When they removed a third of it surgically and used chemoradiotheraphy on the rest, was that their first method of treatment, or was it a plan B like ours would be? And did you have the op first or the chemoradioation?

 

Thanks for your help.

Answer To Your Questions

I first had a colonoscopy during the diagnosis stage.  The gastroenterologist did not remove enough tissue sample from the tumor to definively confirm anal cancer.  I was then refererred to a colonrectal surgeon who removed 1/3 of the tumor but could not remove more surgically due to the fact my spinter muscle could have been compromised.  The radiologist and chemo doctors then performed the standard chemo and radiation treatments.  I had 30 rounds of radiation and 14 days of chemo.  There was no plan B.  This procedure was all part of the original plan.  Again I was diagnosed as being Stage 2.

If the treatments your mom recived did not eliminate all cancer cells it could be the radiation dosage was not strong enough.  I do remember in week 5 my radiologist was performing my weekly exam and became quite.  I asked him what was wrong.  He said he was not seeing the burns he expected to see on my buttocks.  I asked him what that meant.  His reply was you either have extra healthy skin tissue or we did not administer a high enough doasge of radiation.  Fortunately I had healthy tissue and it was not a problem with the radiation dosage.

Mike

eihtak

Adam26....

Hi, I am so sorry that you did not receive a more positive report. Second opinions are often a good idea, if for no other reason than to offer some reassurance that the recommended treatment is the best option.

I was diagnosed with Stage 3b anal cancer 4 1/2 years ago. Prior to beginning treatment I had surgery (meant to be temporary) to have a colostomy. This was decided due to tumor size and location and to make treatment more manageable as I was quite sick at the time.  I was to have this reversed 6 months after treatment but due to severe radiation damage and based on my doctors recommendation as well as that of a specialist it was determined that reversal would most likely be unsuccessful leaving me incontinent of my bowels. So long story short....I have had an ostomy for over 4 years.

I won't lie....there is a period of adjustment but for me it wasn't long. I am physically active, travel, do light yoga, swim, etc. and all I did prior to having the "bag". I think the vision that people have in their minds is much worse than the actual process. I do have to be aware of certain foods that trigger things like gas or constipation....but so do people without an ostomy.

A stoma nurse can help explain the placement and different kinds of ostomies. The "stoma" is the word for the actual opening which resembles round lips. There are colostomies (some are called "loop" ostomies....that is mine and easier to reverse as it leaves the rectum and anus in place even though not functioning). APR surgery takes that whole area out and basically closes the "crack" area....sometimes called a "barbie butt", as it resembles that of a doll.  There are also ileostomies (vs colostomies) which involve the small intestine and usually mean more liquidy output (stool). People with bladder issues sometimes get what is called a urostomy which is for the drainage of urine.

There are also a variety of manufacturers that make supplies (bags) and some work better than others based on a persons skin type and body shape. This part usually means some trial and error until you find what works best, and most hospitals here have a contract with one manufacturer so it is not always the one a person stays with upon leaving after surgery.

There is a site called  C3Life  that is an on line ostomy group for people with all sorts of ostomy questions from all over the world. I find it very informative but a bit slow in getting a response....yet you may find it helpful to just read through some of the posts. Fortunately my area also has an in-person support group that has been a tremendous help especially early on.

Again.....the fear is only of the unknown, if this is the only option for your mum, know that she will be just fine once she and you learn the ropes. It is easy, and at times even convienient. I do not have any anal pain to deal with when having a bowel movement as so many others deal with daily and that is another plus! I think people picture walking around with a bag of poo on their belly all day when in reality my bag is empty most of the day. Just like you (or many) having a bowel movement once or twice a day, I have to empty it in the morning and then depending on what and how I eat, again at night....most of the time it lays flat, empty, and unnoticable to others.

I will keep you both in my continued prayers and be here to offer any help I can as you move through this.

katheryn

Adam26

Thank you

Hi guys,

 

Thank you all so much for your replies. I was going to reply to them individually but I think it could make the thread a bit messy so I will post this message instead.

 

The irony about the situation is that her MRI scan came back as clear so if it hadn't been for the biopsy, she would have been about 8 months NED. It's essentially a small clump of cells that survived the ordeal.

 

I just wonder, we finished the treatment October 15th,Mao that was just under 9 months ago. Is there no small chance that the chemoradioation is still working? Does anyone know of an alternative in this situation that might arise from a second opinion?  Perhaps a partial op and more radiotherapy? Perhaps watching and waiting? It's all very doom and gloom at the moment, instead of 8 months NED, she still has cancer, she needs a major op and she needs a permanent colostomy bag. 

 

I can't really put a positive spin on this right now. In fact, if any of you guys are in the south of England, please feel free to come round and visit, maybe cheer her up.

Adam26

Suzanne

Hi Suzanne,

 

Your reply about your mum cheered me up.

 

May I ask how bad her pain was post operation and how long it took to go away? Could I also ask about the practicalities of her having a colostomy? Does she wear it all day, is it manageable? I know she's 80, but do you think my mum at 57 could still do things like play tennis, swim, walk the dog, travel etc.

Adam26

mxperry220 said:

Answer To Your Questions

I first had a colonoscopy during the diagnosis stage.  The gastroenterologist did not remove enough tissue sample from the tumor to definively confirm anal cancer.  I was then refererred to a colonrectal surgeon who removed 1/3 of the tumor but could not remove more surgically due to the fact my spinter muscle could have been compromised.  The radiologist and chemo doctors then performed the standard chemo and radiation treatments.  I had 30 rounds of radiation and 14 days of chemo.  There was no plan B.  This procedure was all part of the original plan.  Again I was diagnosed as being Stage 2.

If the treatments your mom recived did not eliminate all cancer cells it could be the radiation dosage was not strong enough.  I do remember in week 5 my radiologist was performing my weekly exam and became quite.  I asked him what was wrong.  He said he was not seeing the burns he expected to see on my buttocks.  I asked him what that meant.  His reply was you either have extra healthy skin tissue or we did not administer a high enough doasge of radiation.  Fortunately I had healthy tissue and it was not a problem with the radiation dosage.

Mike

Thanks Mike for your reply

Since our situation is a bit different to yours, as my mum's chemoradiotheraph failed, I wonder if they could still do someone similar to you whereby they remove some of the tumour from the anal sphincter and then give her more chemoradiotheraoy to take care of the rest. It is millimetres we're talking about after all. 

The oncologist seemed quite adamant though. 

Adam26

eihtak said:

Adam26....

Hi, I am so sorry that you did not receive a more positive report. Second opinions are often a good idea, if for no other reason than to offer some reassurance that the recommended treatment is the best option.

I was diagnosed with Stage 3b anal cancer 4 1/2 years ago. Prior to beginning treatment I had surgery (meant to be temporary) to have a colostomy. This was decided due to tumor size and location and to make treatment more manageable as I was quite sick at the time.  I was to have this reversed 6 months after treatment but due to severe radiation damage and based on my doctors recommendation as well as that of a specialist it was determined that reversal would most likely be unsuccessful leaving me incontinent of my bowels. So long story short....I have had an ostomy for over 4 years.

I won't lie....there is a period of adjustment but for me it wasn't long. I am physically active, travel, do light yoga, swim, etc. and all I did prior to having the "bag". I think the vision that people have in their minds is much worse than the actual process. I do have to be aware of certain foods that trigger things like gas or constipation....but so do people without an ostomy.

A stoma nurse can help explain the placement and different kinds of ostomies. The "stoma" is the word for the actual opening which resembles round lips. There are colostomies (some are called "loop" ostomies....that is mine and easier to reverse as it leaves the rectum and anus in place even though not functioning). APR surgery takes that whole area out and basically closes the "crack" area....sometimes called a "barbie butt", as it resembles that of a doll.  There are also ileostomies (vs colostomies) which involve the small intestine and usually mean more liquidy output (stool). People with bladder issues sometimes get what is called a urostomy which is for the drainage of urine.

There are also a variety of manufacturers that make supplies (bags) and some work better than others based on a persons skin type and body shape. This part usually means some trial and error until you find what works best, and most hospitals here have a contract with one manufacturer so it is not always the one a person stays with upon leaving after surgery.

There is a site called  C3Life  that is an on line ostomy group for people with all sorts of ostomy questions from all over the world. I find it very informative but a bit slow in getting a response....yet you may find it helpful to just read through some of the posts. Fortunately my area also has an in-person support group that has been a tremendous help especially early on.

Again.....the fear is only of the unknown, if this is the only option for your mum, know that she will be just fine once she and you learn the ropes. It is easy, and at times even convienient. I do not have any anal pain to deal with when having a bowel movement as so many others deal with daily and that is another plus! I think people picture walking around with a bag of poo on their belly all day when in reality my bag is empty most of the day. Just like you (or many) having a bowel movement once or twice a day, I have to empty it in the morning and then depending on what and how I eat, again at night....most of the time it lays flat, empty, and unnoticable to others.

I will keep you both in my continued prayers and be here to offer any help I can as you move through this.

katheryn

Thanks Katheryn

Hi Katheryn,

Thank you for your reply. 

This is nice and positive. So it's essentially a flat bag except in the morning and at night. In theory, could you not remove the bag during the day? Could I ask what sort of clothes you can wear, so domyou have to wear baggy stuff? Can you have it lower down the tummy? How long does the pain last after the op? And finally, can you still do exercise and live a normal life?

Also, do you know if there is any website I can look into which might have information on artifical anal sphincter a being tested? I know they did an experiment with one that worked well a few years ago. If they one day remove yours and my mum's need for a colostomy, that would be a great thing.

mp327

Adam26 said:

Suzanne

Hi Suzanne,

 

Your reply about your mum cheered me up.

 

May I ask how bad her pain was post operation and how long it took to go away? Could I also ask about the practicalities of her having a colostomy? Does she wear it all day, is it manageable? I know she's 80, but do you think my mum at 57 could still do things like play tennis, swim, walk the dog, travel etc.

Adam

I am just going to throw this out there and let you do your own search on this, so here goes.  There is a treatment called "Brachytherapy," which involves inserting a radioactive rod into the anal canal to treat anal cancer.  I know of one person who had a recurrence who underwent this treatment.  I have not communicated with her in a number of years, so I don't know if she is still NED or not, but I know after she received this treatment, her recurrence was gone.  I also know another person who received the standard chemo/radiation (external), then received brachytherapy for a short time immediately after the standard protocol was finished.  She is also doing well.  It might be something to look into and ask your Mom's doctor about.  I do not know if it is available where you are and I would not know if it would even be an option for your Mom, based on her specific situation.  But I don't think it would hurt to ask about it.  For search purposes, I would search "Brachytherapy for Anal Cancer" and see what comes up.

Still sending prayers for you and your Mom!

Martha 

loveyouall

Adam26 said:

Suzanne

Hi Suzanne,

 

Your reply about your mum cheered me up.

 

May I ask how bad her pain was post operation and how long it took to go away? Could I also ask about the practicalities of her having a colostomy? Does she wear it all day, is it manageable? I know she's 80, but do you think my mum at 57 could still do things like play tennis, swim, walk the dog, travel etc.

Yes your mom will play tennis, swim, walk the dog, travel !

and so much more Adam! If your mom does need surgery, modern medicine is a remarkable thing for the body is so amazing and heals very well especially at 57! Yes, there was discomfort after surgery but not at the place of the stoma for that has no nerve endings. My mom had open surgery, and some other surgery in the area because of the area of the cells by the vaginal area. She had pretty major surgery where they needed to do some reconstruction, but it is  the incisions which cause the most discomfort. She also (don't get scared) had a tiny hernia in the hospital so they needed to do surgery again while she was there to insert a mesh so that a hernia would not recur. This was a blessing that she was actually able to have that done while still in hospital. This is why it took her 12 weeks to heal becuase so much was done. I would doubt that your mom will go through all of that!  Yes there was discomfort but that is what pain medicine is for and the hospital will make sure she is well supplied. Your mom may have laproscopic surgery which is much less invasive than actual open surgery like my mom had and healing time can be much faster than my moms. Either way, you mom will heal! My mom does wear hers all day with no problems. You would never ever know it!! My mom has bought no new clothing. She had her stoma placed lower down which my mom loves. If the time comes have your mom determine where she will be most comfortable with hers. She will have a stoma nurse and have your mom decide for her own what is best for herself in terms of comfort for clothing. My mom has no issues with the pouch and stoma. There is something called irrigation if your mom choices a few months after surgery. This is where she becomes very regular through irrigating  and can wear a cap over the stoma and go on her way (no bag!). Please google irrigation if you want to read more about it. It is for some people and they love it but it is a choice she can make. Your mom will regain a full life absolutely, no matter what!  

If the time comes find out how the surgery may be perform.... if it is laproscopic - then the healing time is less vs open surgery. Either way your mom will get through this and resume her wonderful life. As mentioned it is very well worth it! 

 

Again you may ask me anything . Hugs!