Anal cancer T1/NO/MO

Adam26 · September 2014

Firstly, hello to everyone I am new to this web page!

Wow, it hurts to have to write that subject line. My mum was diagnosed with stage 1 anal cancer about 8/9 weeks ago and she is just over 2 weeks away from finishing her chemoradiotheraphy.

Unfortunately, she suffers badly from anxiety and the thought of reading anything negative is too much for her, so I am here in her place to ask you all a couple of questions.

Could anybody please tell me anything positive about my mum's condition and the stage of it? Her oncologist described it as 'very treatable', but mentally it has been a huge challenge for us all, though especially my mum. I've read that stage 1 has a very good prognosis and also a very low recurrence rate too, does anybody know about this? Anything positive would be great as I can tell her and it all helps the cause! I've certainly learnt through this experience that positivity and morale is very important!

I would like to finish by saying that I am sending all my best wishes to everybody here and wishing you good health for the future,

Adam

sephie · September 2014

the best stage

it is very very positive that she is stage 1 with no nodes and no mets...... the best way to have this cancer except perhaps pre cancer or cancer in situ......very curable...sephie

Ouch_Ouch_Ouch · September 2014

Hello to you...

Hello, Adam & Adam's Mum:

I'm sorry to have to meet you under these circumstances, but you've come to the right place where you can ask the most frank of questions and get honest, empathetic answers. Your Mum's doctor should prescribe her an anti-anxiety med. It's very common for cancer patients to need them and maybe even anti-depressants and a sleeping med.

Anal cancer is very treatable with the standard protocol, especially at stage 1. Here in the USA, the standard protocol is two rounds of Mitomycin & 5-FU (chemotherapy drugs) and 32 or so radiation treatments. It can be a brutal course, but it's effective. My radiation oncologist says that, to date, he's never had a failure with it.

These sites will give you a lot of information. Other forum members will also have more sites for you to check:

* Read these forum messages to get an idea of some of the possible side effects that can continue even after treatment ends.

* Anal Cancer section, American Cancer Society -http://www.cancer.org/cancer/analcancer/index

* HPV & Anal Cancer Foundation - http://www.analcancerfoundation.org/

* "Staging of Anal Cancer", Anal Cancer Treatment, National Cancer Institute (USA) - http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient/page2

* "Statistics and outlook for cancer of the anus", Cancer Research UK - http://www.cancerresearchuk.org/about-cancer/type/anal-cancer/treatment/statistics-and-outlook-for-cancer-of-the-anus

(A high percentage of anal cancers, as well as some other kinds of cancer, are caused by one of the HPVs (Human Papillomavirus). Does your Mum have HPV? The pathology report should tell you that and which version of HPV. For example, I have HPV-16, a common cancer-causing strain. One of the risk factors given for anal cancer is "Having many sexual partners." As uncomfortable as that may sound to you as a son, please be assured that having only one sexual partner in your whole life is plenty, if that person is infected with HPV.)

[The term "met" used in a post above means "metastisis", that the cancer has speard to farther parts of the body. This is NOT your Mum's case - hooray!]

mp327 · September 2014

Adam

I'm sorry to hear of your mom's diagnosis and it's quite understandable that she is anxious about all of this. I was just clueless when I was diagnosed in June 2008 about this disease, what the treatment was and what my chances were of beating this disease. My tumor was right on the fence between a stage 1 and a stage 2. I received 30 radiation treatments and 2 rounds of chemo (5FU and Mitomycin). That was 6 years ago and I am still here, presumably healthy unless or until someone tells me otherwise! My life seems completely normal now, with just the occasional episode of cranky bowels, which is nothing I can't handle. I tell you all of this so that you can tell your mom that stage 1 is a good place to be if you have to get this diagnosis and it CAN be beaten.

I don't think any of us will deny that cancer definitely messes with our mind. I was an emotional mess during the time of diagnosis and treatment. It's completely normal. All you can do is continue to be supportive of your mom as a caregiver. It's a tough role, as experienced by my husband. The good news is that this treatment is relatively short, as compared to other types of cancer treatment. It's a rough 6 weeks to be sure, but once done, healing normally takes place very quickly. Your mom has every reason to be hopeful and encouraged!

Oh, and one more thing. I was 54 years old when I was diagnosed and at age 58 I did my very first marathon. That's me in my pic at the finish line. Your mom doesn't have to do a marathon--she just needs to cross the finish line of treatment--and she will!

Martha

Lorikat · September 2014

Hello Adam, stage two here

Hello Adam, stage two here nearly three years NED (no evidence of disease). Blessings to your family

qv62 · September 2014

Adam26

Sorry to hear of your moms diagnosis but glad you have come to the forum, we will all be rooting for her and she seems already off to a good start to have you as her caregiver. This board is a wealth of information and you will need support too, so we are here for you, vent away, ask away and may that ugly cancer soon go away ! All the best, please keep us updated. I am 3 months post treatment and awaiting scan results from Friday. I am fatigued and feel beat up but back at work and keeping my chin up.

jcruz · September 2014

Adam26

Welcome. I think you've gotten some good feedback here and that will continue. Any question or concern that gets raised here always gets multiple answers. I can really relate to you mother's anxiety and not wanting to read anything negative. When I learned of my diagnosis I found this group and read some of the threads and just freaked out and couldn't read anymore until after my treatment ended. Stage 1 is the earliest stage as you know and does have better chances of no recurrence than other stages. Your mother is in the home stretch of treatment and things may get rougher towards the end. My experience was that I hit my lowest point physically about a week after the end of treatment but then I could feel very slow but steady improvement as the days and weeks went on.

I think it's wonderful that you have come here with questions. Your mother is very lucky to have you supporting her. Take care.

Janet

Ouch_Ouch_Ouch · September 2014

mp327 said:
Adam
I'm sorry to hear of your mom's diagnosis and it's quite understandable that she is anxious about all of this. I was just clueless when I was diagnosed in June 2008 about this disease, what the treatment was and what my chances were of beating this disease. My tumor was right on the fence between a stage 1 and a stage 2. I received 30 radiation treatments and 2 rounds of chemo (5FU and Mitomycin). That was 6 years ago and I am still here, presumably healthy unless or until someone tells me otherwise! My life seems completely normal now, with just the occasional episode of cranky bowels, which is nothing I can't handle. I tell you all of this so that you can tell your mom that stage 1 is a good place to be if you have to get this diagnosis and it CAN be beaten.

I don't think any of us will deny that cancer definitely messes with our mind. I was an emotional mess during the time of diagnosis and treatment. It's completely normal. All you can do is continue to be supportive of your mom as a caregiver. It's a tough role, as experienced by my husband. The good news is that this treatment is relatively short, as compared to other types of cancer treatment. It's a rough 6 weeks to be sure, but once done, healing normally takes place very quickly. Your mom has every reason to be hopeful and encouraged!

Oh, and one more thing. I was 54 years old when I was diagnosed and at age 58 I did my very first marathon. That's me in my pic at the finish line. Your mom doesn't have to do a marathon--she just needs to cross the finish line of treatment--and she will!

Martha

Website address needed

Hello, mp327 (Martha):

Could you give Adam the website address of that site your friend created? I keep neglecting to bookmark it.

Thanks!

mp327 · September 2014

Ouch_Ouch_Ouch said:
Website address needed
Hello, mp327 (Martha):

Could you give Adam the website address of that site your friend created? I keep neglecting to bookmark it.

Thanks!

Ouch

I hope you are referring to this one: www.analcancerhelp.info

Adam, this is a very good website with lots of tips on how to deal with side effects, compiled by a friend of mine who is a survivor of anal cancer, with the help of other survivors. Please check it out.

Sweatpea · September 2014

Welcome

this was my first sight to reach out to I'm two yrs out of stage one. The cancer is gone. Going thru what your mum has and is going thru is very hard but this sight can help her feel part of something again I hope u r reading the posts to her. When I read the responces of the women here with the suggestions and there knowing where I was and how I felt helped me out of a depression I didn't know I was in. Stay strong smile everyday and know this too will pass helps but feeling the understanding from people going thru or who went thru what you are going thru right now just helps. Hope to see your mum typing something here soon. Getting it out of u helps too and this is a great positive place to cry wine and get encouragement some understanding and some knowledge. Good luck and good for you for being such a good care taker for you mum. T

Ouch_Ouch_Ouch · September 2014

mp327 said:
Ouch
I hope you are referring to this one: www.analcancerhelp.info

Adam, this is a very good website with lots of tips on how to deal with side effects, compiled by a friend of mine who is a survivor of anal cancer, with the help of other survivors. Please check it out.

Bingo!

Now safely bookmarked. Thank you!

Adam26 · September 2014

Hi guys,
Thank you all very

Hi guys,

Thank you all very much for your messages!

I have relayed your positive and informative replies to my mum and I have personally found it comforting that there are others out there who know what we are going through and have had such great success too! Having been a part of my mum's 'journey' every step of the way, I know how much of a battle it is and so I would like to say that I have so much respect for you all and I hope you are now able to enjoy your lives again and to the full. I think one day my mum may come onto this site herself to write and hopefully even give some help and advice to another newbie.

As you can imagine, I have done a LOT of googling since my mum was diagnosed and whilst I find the pages to be informative, they also raise some questions for me which is quite frustrating. For one thing, our oncologist (I use the word 'our' as I see this as 'our' cancer) gave my mum a 95% chance of being cured and she also mentioned that they are able to "pretty much guarantee, not 100%, but almost there" getting rid of it. I can assure you, she was a stern, quite scary, straight-talking lady - I don't think she was saying that just to be nice and she is a specialist in anal cancer too, so I'm guessing she knows her stuff. Furthermore, Ouch-ouch-ouch mentioned that her oncologist said they had never seen a failure from chemoradio, that is EXACTLY what we were told, this time by a consultant who originally gave my mum her diagnosis. This is where I have my confusion, because on the websites it mentions 80% survival, which is a big difference to 95%. It makes me feel robbed and confused, saying that, I have also seen 90%......there just doesn't seem to be a consistent figure. I know that everybody is different, maybe there was something in my mum's scans that made the oncologist so confident, she did say it was "early" and "small"......but I now have different figures running through my mind and let's be honest, anything short of 100% is scary. I don't want to sound unappreciative, I know that both those figures are pretty good, but it's very hard to not feel annoyed when you're told one thing and you see another, especially when it's your mum and you're powerless to help her, which I find heartbreaking. The nurses originally said to stay off google, maybe this is why!

Anyway, sorry for moaning, I'm just frustrated about this C word and the anguish it causes. Wishing you all the best,

Adam

Ouch_Ouch_Ouch · September 2014

Adam26 said:
Hi guys,
Thank you all very
Hi guys,

Thank you all very much for your messages!

I have relayed your positive and informative replies to my mum and I have personally found it comforting that there are others out there who know what we are going through and have had such great success too! Having been a part of my mum's 'journey' every step of the way, I know how much of a battle it is and so I would like to say that I have so much respect for you all and I hope you are now able to enjoy your lives again and to the full. I think one day my mum may come onto this site herself to write and hopefully even give some help and advice to another newbie.

As you can imagine, I have done a LOT of googling since my mum was diagnosed and whilst I find the pages to be informative, they also raise some questions for me which is quite frustrating. For one thing, our oncologist (I use the word 'our' as I see this as 'our' cancer) gave my mum a 95% chance of being cured and she also mentioned that they are able to "pretty much guarantee, not 100%, but almost there" getting rid of it. I can assure you, she was a stern, quite scary, straight-talking lady - I don't think she was saying that just to be nice and she is a specialist in anal cancer too, so I'm guessing she knows her stuff. Furthermore, Ouch-ouch-ouch mentioned that her oncologist said they had never seen a failure from chemoradio, that is EXACTLY what we were told, this time by a consultant who originally gave my mum her diagnosis. This is where I have my confusion, because on the websites it mentions 80% survival, which is a big difference to 95%. It makes me feel robbed and confused, saying that, I have also seen 90%......there just doesn't seem to be a consistent figure. I know that everybody is different, maybe there was something in my mum's scans that made the oncologist so confident, she did say it was "early" and "small"......but I now have different figures running through my mind and let's be honest, anything short of 100% is scary. I don't want to sound unappreciative, I know that both those figures are pretty good, but it's very hard to not feel annoyed when you're told one thing and you see another, especially when it's your mum and you're powerless to help her, which I find heartbreaking. The nurses originally said to stay off google, maybe this is why!

Anyway, sorry for moaning, I'm just frustrated about this C word and the anguish it causes. Wishing you all the best,

Adam

Variations...

I am NOT a statistician, so take what I have to say as a pure guess.

Although anal cancer is increasing ~20% a year in the US and UK, it is still relatively rare and there is therefore a smaller group from which to draw data. Some figures may relate only to the USA, some only to the UK, some from a more global sample. A lot depends on the amount of involvement when found, even within the same stage. A lot depends on the reaction to the treatments one gets. Not everyone takes the standard USA treatment. Some people may have secondary issues like a severe untreatable infection from a needle stick or the medi-port implantation or even a severe allergic reaction to one of the medications. Some data you see may be outdated. Some people die from completely unrelated conditions before that golden 5 years is up (heart disease, car accidents, etc) and don't live to be counted as surviving that long.

But as far as I know, have read, and have been told, if your Mum had to have anal cancer, she is well positioned to survive it. She may have some nasty side effects afterwards, though. Some of those will fade with time, a amaller amount sometimes becomes permanent. The price of success?

eihtak · September 2014

Ouch_Ouch_Ouch said:
Variations...
I am NOT a statistician, so take what I have to say as a pure guess.

Although anal cancer is increasing ~20% a year in the US and UK, it is still relatively rare and there is therefore a smaller group from which to draw data. Some figures may relate only to the USA, some only to the UK, some from a more global sample. A lot depends on the amount of involvement when found, even within the same stage. A lot depends on the reaction to the treatments one gets. Not everyone takes the standard USA treatment. Some people may have secondary issues like a severe untreatable infection from a needle stick or the medi-port implantation or even a severe allergic reaction to one of the medications. Some data you see may be outdated. Some people die from completely unrelated conditions before that golden 5 years is up (heart disease, car accidents, etc) and don't live to be counted as surviving that long.

But as far as I know, have read, and have been told, if your Mum had to have anal cancer, she is well positioned to survive it. She may have some nasty side effects afterwards, though. Some of those will fade with time, a amaller amount sometimes becomes permanent. The price of success?

Statistics.....

I think you covered the reasons for variation in statistics well. There are so many little things that factor in and can alter the numbers. Something else to consider is the health of the person prior to diagnosis or kind of like, take cancer out of the picture, what other health problems were or are there? This is also the reason for some variations in recovery time.

Also, for most of us cancer not only affects the body but the mind as well. While the body heals, the lasting emotional effects are lingering in not only ouselves but our loved ones who support us.

I hope and pray we can all move forward in health.

Be well......

katheryn

mxperry220 · September 2014

Adam26 said:
Hi guys,
Thank you all very
Hi guys,

Thank you all very much for your messages!

I have relayed your positive and informative replies to my mum and I have personally found it comforting that there are others out there who know what we are going through and have had such great success too! Having been a part of my mum's 'journey' every step of the way, I know how much of a battle it is and so I would like to say that I have so much respect for you all and I hope you are now able to enjoy your lives again and to the full. I think one day my mum may come onto this site herself to write and hopefully even give some help and advice to another newbie.

As you can imagine, I have done a LOT of googling since my mum was diagnosed and whilst I find the pages to be informative, they also raise some questions for me which is quite frustrating. For one thing, our oncologist (I use the word 'our' as I see this as 'our' cancer) gave my mum a 95% chance of being cured and she also mentioned that they are able to "pretty much guarantee, not 100%, but almost there" getting rid of it. I can assure you, she was a stern, quite scary, straight-talking lady - I don't think she was saying that just to be nice and she is a specialist in anal cancer too, so I'm guessing she knows her stuff. Furthermore, Ouch-ouch-ouch mentioned that her oncologist said they had never seen a failure from chemoradio, that is EXACTLY what we were told, this time by a consultant who originally gave my mum her diagnosis. This is where I have my confusion, because on the websites it mentions 80% survival, which is a big difference to 95%. It makes me feel robbed and confused, saying that, I have also seen 90%......there just doesn't seem to be a consistent figure. I know that everybody is different, maybe there was something in my mum's scans that made the oncologist so confident, she did say it was "early" and "small"......but I now have different figures running through my mind and let's be honest, anything short of 100% is scary. I don't want to sound unappreciative, I know that both those figures are pretty good, but it's very hard to not feel annoyed when you're told one thing and you see another, especially when it's your mum and you're powerless to help her, which I find heartbreaking. The nurses originally said to stay off google, maybe this is why!

Anyway, sorry for moaning, I'm just frustrated about this C word and the anguish it causes. Wishing you all the best,

Adam

Should Not Focus On Stats

If I was in your shoes I would not focus as much on the survival stats as I would on the Stage and healthtcare professionals. Stats are no more than that just stats. I am a Stage 2 anal cancer survivor. I have been cancer free for 5 years 8 months. I would be sceptical if any doctor told me there was 100% cure for any stage of this type of cancer. Your mom has the best scenerio of anal cancer which is Stage 1. There are no guaragtees in life whether it be anal cancer or anything else. You and your mom should not focus on survival stats but how to handle the treatment journey. In my case i realize cancer fear will be with me for the rest of my life but life goes on.

Mike

mp327 · September 2014

Adam26 said:
Hi guys,
Thank you all very
Hi guys,

Thank you all very much for your messages!

I have relayed your positive and informative replies to my mum and I have personally found it comforting that there are others out there who know what we are going through and have had such great success too! Having been a part of my mum's 'journey' every step of the way, I know how much of a battle it is and so I would like to say that I have so much respect for you all and I hope you are now able to enjoy your lives again and to the full. I think one day my mum may come onto this site herself to write and hopefully even give some help and advice to another newbie.

As you can imagine, I have done a LOT of googling since my mum was diagnosed and whilst I find the pages to be informative, they also raise some questions for me which is quite frustrating. For one thing, our oncologist (I use the word 'our' as I see this as 'our' cancer) gave my mum a 95% chance of being cured and she also mentioned that they are able to "pretty much guarantee, not 100%, but almost there" getting rid of it. I can assure you, she was a stern, quite scary, straight-talking lady - I don't think she was saying that just to be nice and she is a specialist in anal cancer too, so I'm guessing she knows her stuff. Furthermore, Ouch-ouch-ouch mentioned that her oncologist said they had never seen a failure from chemoradio, that is EXACTLY what we were told, this time by a consultant who originally gave my mum her diagnosis. This is where I have my confusion, because on the websites it mentions 80% survival, which is a big difference to 95%. It makes me feel robbed and confused, saying that, I have also seen 90%......there just doesn't seem to be a consistent figure. I know that everybody is different, maybe there was something in my mum's scans that made the oncologist so confident, she did say it was "early" and "small"......but I now have different figures running through my mind and let's be honest, anything short of 100% is scary. I don't want to sound unappreciative, I know that both those figures are pretty good, but it's very hard to not feel annoyed when you're told one thing and you see another, especially when it's your mum and you're powerless to help her, which I find heartbreaking. The nurses originally said to stay off google, maybe this is why!

Anyway, sorry for moaning, I'm just frustrated about this C word and the anguish it causes. Wishing you all the best,

Adam

Adam

I have to agree with what has already been said. I think it causes undue stress to focus on statistics. We are all individuals and no two people are alike. For all we know, some of the people included in those numbers were in poor health due to factors other than their anal cancer. Others may have perished in accidents, etc. So, my advice is to not put too much importance on those stats and put your focus into helping your mom get through treatment. As you already know, it's a bumpy road, albeit for a short time. But her cancer was caught early and I think she has a very good chance of beating it. No doctor will ever give a 100% guarantee, which is what we would all like, but your mom will be a suvivor just like the rest of us here.

Martha

Ouch_Ouch_Ouch · October 2014

eihtak said:
Statistics.....
I think you covered the reasons for variation in statistics well. There are so many little things that factor in and can alter the numbers. Something else to consider is the health of the person prior to diagnosis or kind of like, take cancer out of the picture, what other health problems were or are there? This is also the reason for some variations in recovery time.

Also, for most of us cancer not only affects the body but the mind as well. While the body heals, the lasting emotional effects are lingering in not only ouselves but our loved ones who support us.

I hope and pray we can all move forward in health.

Be well......

katheryn

What she said...

"Something else to consider is the health of the person prior to diagnosis or kind of like, take cancer out of the picture, what other health problems were or are there?"

Excellent point, eihtak.

Adam26 · October 2014

Thank you for all your

Thank you for all your replies!

I can see now that these numbers don't paint a 100% accurate picture so I think I should probably lay off them now, my mum finishes her treatment in exactly 2 weeks from today, so I've been trying to help with the moral battle. An actress over here in the UK, who was last year diagnosed with stage 4 colon cancer and has just come out and said she's going to have to stop her treatment and is hoping to spend one last Christmas with her family. When my mum was having her diagnosis tests, where they thought it was bowel cancer, this actress was her inspiration, so when this came out she was beat up emotionally - for both herself and of course the actress. It's a shame but over here they seem to only concentrate on the bad stories and never the good ones. I had to remind her that stage 4 colon cancer is very different to stage 1 anal cancer, this is just an example of the emotional obstacles we've encountered along the way and I'm sure you can all relate to this yourselves.

I do think though that I will hang on to that 95% we were given from the oncologist, because I believe that was a personal percentage for my mum based on everything the oncologist knew about her and the condition and it gives me positivity when I think about the significance of that number, it's not 100%, but it's almost there and it seems like a real statement of intent and confidence from the oncologist......and the consultant too who was very positive with her, we actually felt happy when we left his office!

mp327 · October 2014

Adam26 said:
Thank you for all your
Thank you for all your replies!

I can see now that these numbers don't paint a 100% accurate picture so I think I should probably lay off them now, my mum finishes her treatment in exactly 2 weeks from today, so I've been trying to help with the moral battle. An actress over here in the UK, who was last year diagnosed with stage 4 colon cancer and has just come out and said she's going to have to stop her treatment and is hoping to spend one last Christmas with her family. When my mum was having her diagnosis tests, where they thought it was bowel cancer, this actress was her inspiration, so when this came out she was beat up emotionally - for both herself and of course the actress. It's a shame but over here they seem to only concentrate on the bad stories and never the good ones. I had to remind her that stage 4 colon cancer is very different to stage 1 anal cancer, this is just an example of the emotional obstacles we've encountered along the way and I'm sure you can all relate to this yourselves.

I do think though that I will hang on to that 95% we were given from the oncologist, because I believe that was a personal percentage for my mum based on everything the oncologist knew about her and the condition and it gives me positivity when I think about the significance of that number, it's not 100%, but it's almost there and it seems like a real statement of intent and confidence from the oncologist......and the consultant too who was very positive with her, we actually felt happy when we left his office!

Adam

I think keeping a positive attitude through all of this is key. It's not always easy, especially on the rough days, but I think it's very important. Good for you for staying positive--I'm sure your mom gets great encouragement from that! This will all turn out okay for her, so both of you just hang in there!

Adam26 · October 2014

Thank you, we are hanging in

Thank you, we are hanging in there and with jus 1 and a half weeks left now until the treatment ends!

Does anybody know about symptoms during treatment? My mum has basically had a lot of pain in the bathroom as well as needing to go to the toilet often and usually with very little notice in advance. Is this normal and how long after the treatment does it last? She's getting really down about it, I keep reminding her it is temporary.

All the best everyone!

mxperry220 · October 2014

Adam26 said:
Thank you, we are hanging in
Thank you, we are hanging in there and with jus 1 and a half weeks left now until the treatment ends!

Does anybody know about symptoms during treatment? My mum has basically had a lot of pain in the bathroom as well as needing to go to the toilet often and usually with very little notice in advance. Is this normal and how long after the treatment does it last? She's getting really down about it, I keep reminding her it is temporary.

All the best everyone!

3-4 Months

The diarrhea lasted 3-4 months post treatment for me. The urgency lasted around 2 years post treatment. I still take 2 iimodium daily. I have no diarreha but multiple bowel movements daily. I am 5 years 8 months post treatment.

Mike

Anal cancer T1/NO/MO

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