newly diagnosed, looking for info

LaCh

Hello--
Just diagnosed with squamous cell carcinoma, 3cm, no lymph node involvment and no metastisis. I'm seeing oncologist for the first time tomorrow. I'm trying to get a feel for the side effects people have experienced from the treatment, long term and short term, (knowing that there's a range of side effects and that they vary from person to person). I'd like to hear what people have experienced from the chemo and radiation and the surgery that comes after. If untreated, the tumor will kill me, and if treated, the treatment will will either cure me or kil me, so the choice to be treated seems clear. That said, my personal choice is not to have a colostomy or bowel incontinence and those issues will be a factor in my decisions regarding treatments. I sure don't want to die just yet and will do everything in my power to avoid that, but for me, it's a quality of life issue. How many of you have lost sphincter control and regained it? How many have lost it and not regained it? Is it a gradual thing that starts during treatment or does it just happen one day and that's it? Can anyone share their experiences? Thanks very much in advance.

mp327

Hi LaCh--
I'm sorry your diagnosis has led you to this site. From the info you've provided, it sounds like your tumor was found pretty early and that you are a Stage 2, which is very good news. Your meeting with your oncologist tomorrow should be very informative and an opportunity for you to ask many questions. So that you have some info about anal cancer going in tomorrow, I would recommend that you go to the website for the National Comprehensive Cancer Network (NCCN.org) and register. Then you can view the latest guidelines for treatment of anal cancer and print them out. Going in tomorrow with as much info as possible will allow you to ask more questions.

You mentioned getting chemo and radiation and "the surgery that comes after it." For most people, surgery is not needed after chemo/rad. I was on the fence between Stage 1 and Stage 2 and am over 4 years post-treatment and have never had surgery for the cancer. I do not have a colostomy and my bowel function at this point is fairly normal, perhaps just having a couple more BM's per day than before. I deal with a little hip pain now and then, which I feel is related to the radiation. But that's about it as far as long-term side effects go.

As for what to expect in the way of side effects during treatment, it is a mixed bag. Some people have minimal side effects, while others deal with a lot. I had severe fatigue, thrush in my mouth, partial hair loss, severe diarrhea, and what I would say were 2nd. degree burns in my groin, genital and anal areas, which caused pain when urinating and having BM's. I didn't suffer from nausea too much, as I was given some very good meds to control that. I lost a few pounds because of a non-existent appetite into about the 4th. week. All that being said, I survived it and am doing quite well at this point. You will survive it too.

When you meet with the oncologist, I would suggest asking how many cases of anal cancer he/she has treated. While the treatment is fairly straightforward, some doctors have a better understanding of it than others. This is why I encourage you to print out the NCCN guidelines. If something in your doctor's plan doesn't sound like it is the standard protocol, then you ask questions until you get answers and agree on the treatment plan. If that doesn't happen, then you seek another opinion.

I wish you all the best and hope you'll come here often for support and answers to questions that only those who have gone through this would be able to answer. While I found my doctors helpful, they certainly didn't have the perspective of a survivor. Good luck to you tomorrow--please let us know how it goes.

Marynb

LaCh
Hi. I am sorry about your diagnosis. I agree with what has been said. I had stage 2 cancer with the standard protocol, which does not include surgery at all. The radiation shrinks the tumor and the chemo kills cancer skills systemically. With this protocol there is a high cure rate. During treatment, my side effects were minimal. I did have some burning anf pain, but it was very short in duration. I did not lose hair, did not lose any sphincter control at all. I did have very low blood count twice, which required neuprogen shots. That was not fun. The treatment is very doable.

The main thing that you need to do right away is research the best cancer hospital for anal cancer that you can get to. I started out at a hospital in my home state and quickly realized that I needed to be at a top rated hospital with expertise in anal cancer. Survival rates are not the same for all hospitals. You need to be at a cancer hosptial with better than expected survival rates. US News and World reports puts out a rating with survival rates, for one. You need top rated doctors with state of the art equipment in a top rated cancer hospital, even if you have to travel to get there. I know too many people who are no longer with us because they trusted and liked their local doctors rergardless of their level of expertise.

You may not need surgery at all. Most do not.

Hang in there!

LaCh

mp327 said:

Hi LaCh--
I'm sorry your diagnosis has led you to this site. From the info you've provided, it sounds like your tumor was found pretty early and that you are a Stage 2, which is very good news. Your meeting with your oncologist tomorrow should be very informative and an opportunity for you to ask many questions. So that you have some info about anal cancer going in tomorrow, I would recommend that you go to the website for the National Comprehensive Cancer Network (NCCN.org) and register. Then you can view the latest guidelines for treatment of anal cancer and print them out. Going in tomorrow with as much info as possible will allow you to ask more questions.

You mentioned getting chemo and radiation and "the surgery that comes after it." For most people, surgery is not needed after chemo/rad. I was on the fence between Stage 1 and Stage 2 and am over 4 years post-treatment and have never had surgery for the cancer. I do not have a colostomy and my bowel function at this point is fairly normal, perhaps just having a couple more BM's per day than before. I deal with a little hip pain now and then, which I feel is related to the radiation. But that's about it as far as long-term side effects go.

As for what to expect in the way of side effects during treatment, it is a mixed bag. Some people have minimal side effects, while others deal with a lot. I had severe fatigue, thrush in my mouth, partial hair loss, severe diarrhea, and what I would say were 2nd. degree burns in my groin, genital and anal areas, which caused pain when urinating and having BM's. I didn't suffer from nausea too much, as I was given some very good meds to control that. I lost a few pounds because of a non-existent appetite into about the 4th. week. All that being said, I survived it and am doing quite well at this point. You will survive it too.

When you meet with the oncologist, I would suggest asking how many cases of anal cancer he/she has treated. While the treatment is fairly straightforward, some doctors have a better understanding of it than others. This is why I encourage you to print out the NCCN guidelines. If something in your doctor's plan doesn't sound like it is the standard protocol, then you ask questions until you get answers and agree on the treatment plan. If that doesn't happen, then you seek another opinion.

I wish you all the best and hope you'll come here often for support and answers to questions that only those who have gone through this would be able to answer. While I found my doctors helpful, they certainly didn't have the perspective of a survivor. Good luck to you tomorrow--please let us know how it goes.

thanks
Thanks mp327,
Thanks so much for your quick response. I'll check out the website that you recommended. The oncologist has treated anal squamous cell carcinoma before; he was recommended by my gastroenterologist who said that he has and that they've treated many patients with this together in the past. I'm in New York City so odds are he's going to be as good as any. The only reason that I assumed that I'd need followup surgery was because that's what the gastroenterologist said, but it would be really great if I didn't. The reason that I wanted to ask patients about their experiences was to get the story from THEIR perspective, rather than only that of the doctors. They sometimes have (an ultimately counterproductive) way of ommitting or downplaying certain things. I have and have had a deep mistrust and dislike of western medicine and it's practitioners (with the one utterly incredible exception of the gastroenterologist. I feel extremely lucky in that, despite my deep misgivings and negative feelings about the medical community, just when I really need someone to trust, and in the worst way, it happens to be someone involved in THIS. She's an absolute saint, just a decent, decent human being who "gets me" in the most important ways). Anyway, thanks again, I really, really appreciate your words and thoughts.

LaCh

Marynb said:

LaCh
Hi. I am sorry about your diagnosis. I agree with what has been said. I had stage 2 cancer with the standard protocol, which does not include surgery at all. The radiation shrinks the tumor and the chemo kills cancer skills systemically. With this protocol there is a high cure rate. During treatment, my side effects were minimal. I did have some burning anf pain, but it was very short in duration. I did not lose hair, did not lose any sphincter control at all. I did have very low blood count twice, which required neuprogen shots. That was not fun. The treatment is very doable.

The main thing that you need to do right away is research the best cancer hospital for anal cancer that you can get to. I started out at a hospital in my home state and quickly realized that I needed to be at a top rated hospital with expertise in anal cancer. Survival rates are not the same for all hospitals. You need to be at a cancer hosptial with better than expected survival rates. US News and World reports puts out a rating with survival rates, for one. You need top rated doctors with state of the art equipment in a top rated cancer hospital, even if you have to travel to get there. I know too many people who are no longer with us because they trusted and liked their local doctors rergardless of their level of expertise.

You may not need surgery at all. Most do not.

Hang in there!

thank you
Thank you Marynb,
I'm most definitely not a person to join groups (I'm not even on Facebook, simply because I prefer not to be) but this site seemed like a good resource to tap into. As I mentioned in my other response, the only reason that I thought I'd need surgery is because that's what my gastroenterologist told me and she's worked closely with the oncologist to treat other people with anal squamous cell carcinoma. That said, I absolutely hope that I don't. My concerns about the side effects are because my body over responds to medications of all classifications; to antihistamines, to statins, to red rice yeast for people who have side effects to statins, to prednisone, to caffeine, to the most benign of substances and drugs; my body doesn't and never has responded as doctors assume that it will but rather, it overresponds, and here I am about to undergo treatment with the harshest drugs western medicine has come up with. So that's why I'm concerned, and why I decided to join this website, to get other perspectives and hear about other people's experiences, and hope that I don't fall outside the bell curve of "most commonly occurring side effects," as I usually do. Anyway, thanks again for your response, I appreciate it very, very much, and as adverse as I usualy am to joining groups, I can absolutely see the value in joining this one. Thanks.

Marynb

LaCh said:

thank you
Thank you Marynb,
I'm most definitely not a person to join groups (I'm not even on Facebook, simply because I prefer not to be) but this site seemed like a good resource to tap into. As I mentioned in my other response, the only reason that I thought I'd need surgery is because that's what my gastroenterologist told me and she's worked closely with the oncologist to treat other people with anal squamous cell carcinoma. That said, I absolutely hope that I don't. My concerns about the side effects are because my body over responds to medications of all classifications; to antihistamines, to statins, to red rice yeast for people who have side effects to statins, to prednisone, to caffeine, to the most benign of substances and drugs; my body doesn't and never has responded as doctors assume that it will but rather, it overresponds, and here I am about to undergo treatment with the harshest drugs western medicine has come up with. So that's why I'm concerned, and why I decided to join this website, to get other perspectives and hear about other people's experiences, and hope that I don't fall outside the bell curve of "most commonly occurring side effects," as I usually do. Anyway, thanks again for your response, I appreciate it very, very much, and as adverse as I usualy am to joining groups, I can absolutely see the value in joining this one. Thanks.

LaCh
I appreciate your aversion to groups. I feel the same way and I don't use social media either. My body is also very sensitive to all medications and in my 60 years I have seldom taken anything more than a Tylenol, for that reason. That being said, my body handled the chemo and radiation very well. You are in NYC, so I hope you get to Sloan Kettering. Having a doctor get you is great, but not enough when dealing with cancer. Get the best care that you can.

eihtak

Welcome
Welcome, sorry you have a need to be here but you will find that perspective you are looking for from people who have been there and not just studied it. There is useful truely helpful info here, and although our journeys are all different, we have many of the same issues. In Feb. 2011 I was diagnosed with Stage 3 Anal Cancer with left pelvic lymph node involvement. My tumor placement and size required that I have a colostomy prior to chemo/rad. It was planned to be temporary, but due to excess radiation dammage will most likely be permanent. I am seeing a specialist in Milwaukee (I live in Central Wisconsin), who is encouraging me to be patient as the inflamation from radiation is still changing almost 2yrs later. So....we will see. (More on that later if needed, but let me say that although it has taken some time to adjust it is not nearly as difficult to deal with as you may imagine) For me, my treatment was difficult. I was severly anemiac to start with and needed several pints of blood and iron infusions throughout treatment. I had a complication with my colon prolapsing out of my body into the colostomy bag from internal swelling. I was in the hospital for a month, and then a local nursing home for almost two months hooked up to TPN (a nutritional supplement via IV). Eventually though, I like most did recover. We all have different reactions to chemo and radiation and some tolerate it better than others, but if you are up for it start right away with boosting your system with fluids and protien drinks (like Boost or Ensure). My one year Pet scan was NED (no evidence of disease), and I will pray that a year from now you will be the same. I have since though been diagnosed with breast cancer and in March had a double mastectomy. I have a CT scan for both on friday. I feel better than I have in years. I eat healthy, exercise daily, and am truely enjoying life. Gather your info. set your mind to it, and you will get through this also. Please keep us posted on how things are going and with any questions.

Lorikat

LaCh said:

thank you
Thank you Marynb,
I'm most definitely not a person to join groups (I'm not even on Facebook, simply because I prefer not to be) but this site seemed like a good resource to tap into. As I mentioned in my other response, the only reason that I thought I'd need surgery is because that's what my gastroenterologist told me and she's worked closely with the oncologist to treat other people with anal squamous cell carcinoma. That said, I absolutely hope that I don't. My concerns about the side effects are because my body over responds to medications of all classifications; to antihistamines, to statins, to red rice yeast for people who have side effects to statins, to prednisone, to caffeine, to the most benign of substances and drugs; my body doesn't and never has responded as doctors assume that it will but rather, it overresponds, and here I am about to undergo treatment with the harshest drugs western medicine has come up with. So that's why I'm concerned, and why I decided to join this website, to get other perspectives and hear about other people's experiences, and hope that I don't fall outside the bell curve of "most commonly occurring side effects," as I usually do. Anyway, thanks again for your response, I appreciate it very, very much, and as adverse as I usualy am to joining groups, I can absolutely see the value in joining this one. Thanks.

LaCh
I was dx T2NOMO squamous cell anal cancer in July 2011. My Family doctor got on the phone and made arrangements for me to go to MDA in Houston, tx. I spent 3 months in Houston having chemo/radiation. My hair thinned out, I was incredibly tired, and about three weeks into treatment bowel movements became excruciating and I was nauseous a great deal of the time. I was given meds for both and they helped a lot.

Finished treatments and instead of resting a few days insisted on being DRIVEN over 800 miles home. By the time I reached home I was running a fever, had 3rd degree burns on my "everything below", pnuemonia, was anemic and had to go in the hospital for a couple of bood transfusions and treatment for the burns. Was neutropenic and in isolation for over a week. Now, at one year NED, I truly believe that if I had taken a few days to rest and heal before returning home I most likely would have not become so Ill. I mean, really, nearly two days in a car with that bum?!!! Stopping at gas stations and restaurants ? (my husband was still eating even if I wasn't, LOL). No sence at all. But I just wanted to be home.

All of this just to say be sure and rest when you need to, and as much as possible, and stay away from Germ-y places as much as possible.

Now, one year later, still dealing with fatigue, dry mouth and eyes and not always predictable bowels, BUT- I am alive and can do most, if not all, I want to do. No surgery at all. I wish you well, and rest, rest, rest. Lorie

7243

My experience
I'm a woman....stage 1.tumor 1.4 cm. I had the standard Nigra protocol; combined chemo -radiation in 30 rad treatments. I am 21 months post treatment and cancer free,

Treatment not too bad; slight nausea, mouth sores, terrible fatigue and terrific burns peri rectal and vaginal. Still can not have comfortable sexual intercourse. Fatigue and depression still a factor .

I was 51 and in very good health and great physical shape before treatment.

No bowel incontinence short or long term for me.

I suggest u opt fort treatment.

A must!

LaCh

Marynb said:

LaCh
I appreciate your aversion to groups. I feel the same way and I don't use social media either. My body is also very sensitive to all medications and in my 60 years I have seldom taken anything more than a Tylenol, for that reason. That being said, my body handled the chemo and radiation very well. You are in NYC, so I hope you get to Sloan Kettering. Having a doctor get you is great, but not enough when dealing with cancer. Get the best care that you can.

drug sensitivity
That's encouraging to know Marynb. With luck, my typical over response to drugs won't be a problem, as yours wasn't. After years of trying to get doctors to take me seriously with regard to this, I finally gave up and simply became the gatekeeper who said "no" to almost every drug they tried to push at me (which automatically sets up an adversarial relationship, whether you want one or not, and labels you as "non compliant" which serves no one's interests). In any case, your similar situation is encouraging, so thank you for that. As far as Sloan Kettering goes, I wanted to go there, mostly because it's a five-minute-walk from where I live and seemed like "one-stop-shopping" (all services coordinated under one roof, so to speak) but they don't accept my insurance. They also have an Integrative Medicine center about two minutes from me, with accupuncture, massage, meditation, diet, etc, etc and do accept outside cancer patients (those treated elsewhere) but don't work with a sliding scale and consequently, are priced out of my reach. (I would have greatly liked to use those services). I'm trying to plan for feeling very sick (while hoping that I don't) and although the hospital that I'll use isn't far, when you're feeling sick, I imagine that it'll seem quite far. (I got myself home from the same hospital two years ago after an emergency appendectomy and found the distance to home very difficult, even by bus). But your words are encouraging. Thanks.

LaCh

Lorikat said:

LaCh
I was dx T2NOMO squamous cell anal cancer in July 2011. My Family doctor got on the phone and made arrangements for me to go to MDA in Houston, tx. I spent 3 months in Houston having chemo/radiation. My hair thinned out, I was incredibly tired, and about three weeks into treatment bowel movements became excruciating and I was nauseous a great deal of the time. I was given meds for both and they helped a lot.

Finished treatments and instead of resting a few days insisted on being DRIVEN over 800 miles home. By the time I reached home I was running a fever, had 3rd degree burns on my "everything below", pnuemonia, was anemic and had to go in the hospital for a couple of bood transfusions and treatment for the burns. Was neutropenic and in isolation for over a week. Now, at one year NED, I truly believe that if I had taken a few days to rest and heal before returning home I most likely would have not become so Ill. I mean, really, nearly two days in a car with that bum?!!! Stopping at gas stations and restaurants ? (my husband was still eating even if I wasn't, LOL). No sence at all. But I just wanted to be home.

All of this just to say be sure and rest when you need to, and as much as possible, and stay away from Germ-y places as much as possible.

Now, one year later, still dealing with fatigue, dry mouth and eyes and not always predictable bowels, BUT- I am alive and can do most, if not all, I want to do. No surgery at all. I wish you well, and rest, rest, rest. Lorie

Thanks Lorikat,
Unfortunately, although it's not for lack of trying, nor for not seeing the value in being well rested, my sleep is abysmal. Over the last seven years, it's gone from bad to worse and now is just awful. I don't want to take a sleeping aid (see above posts) and do the best I can, but to give you an idea, I went to bed at midnight, it's now 4:15 and I've been awake for an hour. That said, I'll give my body every opportunity for sleep and rest and won't try anything heroic. Thanks for your response and advice; this site is proving even more helpful than I hoped. I guess if you're averse to groups like I am and have to join ONE, you might as well join one that's going to be helpful in a way that you might not find elsewhere. Thanks.

LaCh

eihtak said:

Welcome
Welcome, sorry you have a need to be here but you will find that perspective you are looking for from people who have been there and not just studied it. There is useful truely helpful info here, and although our journeys are all different, we have many of the same issues. In Feb. 2011 I was diagnosed with Stage 3 Anal Cancer with left pelvic lymph node involvement. My tumor placement and size required that I have a colostomy prior to chemo/rad. It was planned to be temporary, but due to excess radiation dammage will most likely be permanent. I am seeing a specialist in Milwaukee (I live in Central Wisconsin), who is encouraging me to be patient as the inflamation from radiation is still changing almost 2yrs later. So....we will see. (More on that later if needed, but let me say that although it has taken some time to adjust it is not nearly as difficult to deal with as you may imagine) For me, my treatment was difficult. I was severly anemiac to start with and needed several pints of blood and iron infusions throughout treatment. I had a complication with my colon prolapsing out of my body into the colostomy bag from internal swelling. I was in the hospital for a month, and then a local nursing home for almost two months hooked up to TPN (a nutritional supplement via IV). Eventually though, I like most did recover. We all have different reactions to chemo and radiation and some tolerate it better than others, but if you are up for it start right away with boosting your system with fluids and protien drinks (like Boost or Ensure). My one year Pet scan was NED (no evidence of disease), and I will pray that a year from now you will be the same. I have since though been diagnosed with breast cancer and in March had a double mastectomy. I have a CT scan for both on friday. I feel better than I have in years. I eat healthy, exercise daily, and am truely enjoying life. Gather your info. set your mind to it, and you will get through this also. Please keep us posted on how things are going and with any questions.

quality of life
Thanks eihtak,
It's good to know that despite having to live with a colostomy, you describe a good quality of life. This is an important issue for me. My understanding, such as it is, of what went wrong with Farah Fawcett was that she had chemo but didn't want hair loss or a colostomy and so chose chemotherapies other than those recommended (and only later accepted what was recommended). If that's true (and who knows if it is) I can be guided by what she did wrong and try not to do it too. I personally don't care if I lose my hair but don't want a colostomy (or adult diapers) but I suppose we each have our own unique perspective on quality-of-life issues. Thanks for your input and yes, you're right regarding the experiences of others vs, that of doctors'. That's exactly why I joined this forum.

LaCh

7243 said:

My experience
I'm a woman....stage 1.tumor 1.4 cm. I had the standard Nigra protocol; combined chemo -radiation in 30 rad treatments. I am 21 months post treatment and cancer free,

Treatment not too bad; slight nausea, mouth sores, terrible fatigue and terrific burns peri rectal and vaginal. Still can not have comfortable sexual intercourse. Fatigue and depression still a factor .

I was 51 and in very good health and great physical shape before treatment.

No bowel incontinence short or long term for me.

I suggest u opt fort treatment.

A must!

treatment and another question addressed to all
Thanks 7245.
Yes, I've already chosen to be treated and never considered not being treated. As I see it, the tumor has a 100% chance of killing me and the treatment has a chance of the same but also a chance of a cure. But when you factor in the potential long-term side effects, the equation looks a little different, which is why I wanted to hear other people's take and experience.

I don't know if all the people who have responded to my original post are still following this thread, but for those who are, how many had a PICC and what can you tell me about that?

Thanks in advance.

mp327

LaCh said:

treatment and another question addressed to all
Thanks 7245.
Yes, I've already chosen to be treated and never considered not being treated. As I see it, the tumor has a 100% chance of killing me and the treatment has a chance of the same but also a chance of a cure. But when you factor in the potential long-term side effects, the equation looks a little different, which is why I wanted to hear other people's take and experience.

I don't know if all the people who have responded to my original post are still following this thread, but for those who are, how many had a PICC and what can you tell me about that?

Thanks in advance.

LaCh
I had a port, so I can't really comment on a picc line. I know many people get them and do fine with them. I'm sure someone on this thread probably has a personal experience with one and will comment.

7243

LaCh said:

treatment and another question addressed to all
Thanks 7245.
Yes, I've already chosen to be treated and never considered not being treated. As I see it, the tumor has a 100% chance of killing me and the treatment has a chance of the same but also a chance of a cure. But when you factor in the potential long-term side effects, the equation looks a little different, which is why I wanted to hear other people's take and experience.

I don't know if all the people who have responded to my original post are still following this thread, but for those who are, how many had a PICC and what can you tell me about that?

Thanks in advance.

Port
Hello la Cha ... I had a powerport under my skin right chest. It stayed there until time PET CT 3 months post treatment was completed and fine!

PICC is a central line and I hear works just fine for most.

Lorikat

LaCh said:

Thanks Lorikat,
Unfortunately, although it's not for lack of trying, nor for not seeing the value in being well rested, my sleep is abysmal. Over the last seven years, it's gone from bad to worse and now is just awful. I don't want to take a sleeping aid (see above posts) and do the best I can, but to give you an idea, I went to bed at midnight, it's now 4:15 and I've been awake for an hour. That said, I'll give my body every opportunity for sleep and rest and won't try anything heroic. Thanks for your response and advice; this site is proving even more helpful than I hoped. I guess if you're averse to groups like I am and have to join ONE, you might as well join one that's going to be helpful in a way that you might not find elsewhere. Thanks.

Sometimes rest is just sitting in your chair or lying on the couch closing your eyes. I also have trouble sleeping, but now instead of getting up and finding something to CLEAN (my therapy) I kick back in my chair and read. Type A's all the way! Lorie

Marynb

LaCh said:

treatment and another question addressed to all
Thanks 7245.
Yes, I've already chosen to be treated and never considered not being treated. As I see it, the tumor has a 100% chance of killing me and the treatment has a chance of the same but also a chance of a cure. But when you factor in the potential long-term side effects, the equation looks a little different, which is why I wanted to hear other people's take and experience.

I don't know if all the people who have responded to my original post are still following this thread, but for those who are, how many had a PICC and what can you tell me about that?

Thanks in advance.

LaCh
I just want to tell you that most patients do NOT have severe side effects from this treatment. You can think of every worse case scenario ahead of time and this is a good place to ask all of your questions. Sounds like we have similar sensitivity to medication. As I said, I never took anything more than a Tylenol once in a while. I really didn't need to. Not to underestimate that the burns were uncomfortable, but that stage only lasted about 2 weeks. It was not unbearable. Not even close to labor and childbirth, if you have had a child. You can do this. I wonder if there is a way that you can get rides to and from treatment. Some hospitals have shuttles. Also, American Cancer Society has volunteer drivers. I was blessed to have family help me out. Now is the time to use any support system that you have.

I had a picc line. It was fine. It only stays in suring the 2 chemo weeks and comes out at the end of each week. No problem at all.

LaCh

Marynb said:

LaCh
I just want to tell you that most patients do NOT have severe side effects from this treatment. You can think of every worse case scenario ahead of time and this is a good place to ask all of your questions. Sounds like we have similar sensitivity to medication. As I said, I never took anything more than a Tylenol once in a while. I really didn't need to. Not to underestimate that the burns were uncomfortable, but that stage only lasted about 2 weeks. It was not unbearable. Not even close to labor and childbirth, if you have had a child. You can do this. I wonder if there is a way that you can get rides to and from treatment. Some hospitals have shuttles. Also, American Cancer Society has volunteer drivers. I was blessed to have family help me out. Now is the time to use any support system that you have.

I had a picc line. It was fine. It only stays in suring the 2 chemo weeks and comes out at the end of each week. No problem at all.

Picc/Port
Thanks Marynb,
Um, well, no, haven't given birth but I've had my fair share of injuries and surgeries. I have a pretty high threshhold for pain but it's the sensitivity to drugs that's my concern. I suppose there's no point looking for trouble; better to let it come find me and deal with it as it arises, but I know my body. As for the rides, I checked out the American Cancer Society's website a few days ago and there are no rides in my area. It would have solved a looming problem. Even though the hospital is just a 15 minute walk when all things are equal (meaning that I'm healthy) I think it'll be a diferent story when I'm in the middle of the chemo and radiation. Were you able to take yourself to treatments and return home without assistance? Is that an unreasonable thing to expect (knowing that everybody is different). Well, in any case, my first oncology appointment is this afternoon so I'm sure I'll have at least some of my questions answered. Thanks for the continued support and input, it's a real help.

LaCh

7243 said:

Port
Hello la Cha ... I had a powerport under my skin right chest. It stayed there until time PET CT 3 months post treatment was completed and fine!

PICC is a central line and I hear works just fine for most.

thanks 7243
Thanks 7243. I guess I'll get the scoop this afternoon when I meet with the oncologist, or at least his version of the scoop. I think the biggest help for me from this site has been talking to people who got through it with bowel control and not too many other lingering issues. Did you have hair loss? (It's not a huge concern for me, but I'm just wondering. More pressing is the issue of bowel control, temporary or permanent and a colostomy).

mxperry220

My List of Questions
Here is my list of questions I had when I met with my radiation oncologist I thought I would share with you. I am 3 years 11 months post treatment. I was Stage 2 anal cancer.

What type of cancer do I have?

Is this considered a type of anal cancer or rectal cancer?

Is this a common type cancer?

How much of tumor did Dr. Macaluso remove?

How much of tumor remains?

Will treatments begin after tumor removal heals?

How many radiation treatments will I need?

How much chemo will I need?

What will be frequency of treatments?

How long can I expect treatments to last?

What is prognosis of my cancer condition?

Is this a common type cancer?

What stage is my cancer?

How many cases like mine have you treated?

Will treatments be painful?

Will I have pain medication to control pain?

Should I expect hair loss?

What are next steps?

Will I need assisted transportation?

If so, do you have list of transportation providers?
Mike

Dog Girl

Newly diagnosed
I was dx and treated for Stage 2 squamous cell AC in 2009. I had a 4 cm tumor that was on my sphincter muscle and I was T2MONO. My colo-rectal doctor whom found the tumor and did the biopsy thought I would have to have surgery too, but I think he just didn't know the protocol. (There are cases of tumors "in situ" which means it hasn't grown into any surrounding tissue and can be removed surgically. Some people still choose to have chemo/rad afterwards to be absolutely sure.) However if your tumor is 3 cm surgery is probably not an option for you. As far as side effects, my hair thinned some, but I had fairly thick hair to begin with so it wasn't very noticable. I personally had severe burns which were my worst issue and I also suffered from fatigue. Nausea was not much of an issue as they pushed anti nausea meds and steriods before the actual chemo infusion and I had to only take one anti-nausea pill during the two chemo weeks. I had a power port and I found that putting the pump (which was too big for a fanny pack) in a back pack type purse worked for me the first week as I was still working then. I had IBS before dx, so I sometimes still have urgency issues and I have had about 4 accidents in the last 3 years. However I think that is more of a function of me eating spicy food, IBS, and the location of my tumor which meant my sphincter muscle was directly radiated. As has been mentioned by others, while intense this tx is fairly short, it is doable, and most importantly successful. Keep coming back here to ask questions and know that no question is off limits as we've all been there done that. Good luck with your care team too.