newly diagnosed, looking for info

Marynb

LaCh said:

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
Good luck with your appointment. I went out of state for my treatments and I always had somebody with me. You are in NYC, so you can take a taxi. Save your reciepts for tax purposes. Stay positive!

LaCh

mxperry220 said:

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

thank you for the list
Hello mxperry220,
Thanks for the list, I really appeciate it; it actually has most of the questions that are on mine for the radio oncologist too. I just came from the medical oncologist and got the scoop on the chemo. Unfortunately, I tried to make an appt with the radio oncologist but "the system is down," and they couldn't, so I'll have to call back tomorrow. I have concerns about bowel incontinence; that's high on my list. I also have concerns about the success fail/ rate since avoiding surgery that might also compromise bowel function is my goal. Anyway, thanks very much.

LaCh

Dog Girl said:

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.

good info
Thanks Dog Girl,
I think that mine is close to the sphincter too, something that I'm not happy about. The protocol that I'm going to have is the following (as much as I know without speaking to the radio oncologist yet). Week one and week four, chemo therapy with 5FU and Mitomycin through a pump, Monday through Thursday. Radiation for a duration as yet to be determined. As always my concerns are basically two. One, loss of bowel control and two, that I'll need follow-up surgery which raises odds of loss of bowel control. The frustrating (but understandable) part is that the best that they can do is quote odds, 60% don't need surgery, 30% lose sphincter control, that sort of thing. I guess what I'm saying is that I'm more concerned about the long-term, quality of life issues than the chemo and radiation, which isn't to say that I have NO concerns about those too. I do. It's encouraging to hear that your tumor was on or near the sphincter (and slightly larger than mine) and yet you don't feel like the occasional loss of control that you have is due to radiation effects. That's good to know. Can anyone else comment on their experiences with proximity to sphincter, radiation and bowel incontinence? Has anyone had chemo and radiation that HASN'T killed the tumor? Thanks to all in advance.

Jo Joy

I am still in treatment
Hi there! You must be going through so much right now. I know that when I was first diagnosed that I had many, many concerns and anxiety until I started treatment a month later. For me it seemed I would get answers from the Drs to all my questions, but then that would lead to more questions. I used, and continue to use this discussion board. Pay close attention to what people on this board tell you to buy or have on hand BEFORE you start treatment. They also have tips and tricks from their own experience to help you through any possible side effects. Also please remember in all things that how your body reacts to treatment is unique for you. I read peoples stories on this board, prepared for the worst, and had faith for the best.

Let me introduce myself so you have a point of reference for what I’m about to tell you. I am currently in treatment. I am 47 and am otherwise very healthy. I am a Christian and my faith in God, and prayers of people that care about me, have made a way for me to successfully cope with treatment and manage my negative thoughts when they surface. I am still working at the moment and plan to be doing that through the next two weeks of radiation and the recovery period, and I am also taking it one day at a time. My Drs have been very accommodating and encouraging me to work as long, or even through the entire treatment, as I want.

I am also changing jobs at the end of next week. My new job is more financially stable, less stressful, and is a half a block away from my home. (I live in SoCal, so that in itself is a miracle! ) ) The hospital I am being treated at is a ten minute drive from my home and I am still driving myself to treatment every morning, and then 16 miles on the freeway, to work after that. Both of my employers know of my diagnosis and the timing of my treatment. The new job is willing to let me take time off or work part-time if the last bit of treatment and recovery gets too much for me to work. I start the new job with 2 weeks of sick leave and 3 weeks of vacation leave already established, as I am a Chief Financial Officer, and thus senior management.

I don’t have any other complications such as diabetes, overweight, HPV, HIV, cancer in my family genetics, etc. I ate all the right things, exercised, and maintained a healthy weight. I love veggies and fruit! I have none of the risk factors for this diagnosis. But it happened. I am attributing it to the stress at my present job. It has been constant unrelenting stress for the last two years. The only thing that has changed in my health for the last 5-10 years was I have had my gallbladder removed. Then I had a few incidences of what I would term as substantial rectal bleeding, even when I wasn’t constipated, and I knew something wasn’t right. The tumor was found on a colonoscopy and was 13mm in size so 1.3cm. I think my tumor staging was either T1 or T2 N0M0. It was also in the sphincter muscle. My doctors told me this was “immanently” curable with chemo and radiation. Surgery would only be required if after 6 weeks post treatment, that it still showed evidence of cancer. They want to avoid surgery if at all possible because that means a colostomy bag for the rest of life.

My second and final round of chemo with 96 hour pump begins in the morning. (Thursday) I will get it disconnected on Monday. With the first round of chemo the only side effects that I had was loss of taste about a week after the pump was disconnected which lasted about a week and a half. (Hated that part, even water tasted gross, and my appetite was fine. So I would get thirsty or hungry and didn’t have the satisfaction of the taste of anything) But make sure you drink tons and tons of water! It will flush the toxins out. I also experienced some severe constipation. I took laxatives, stool softeners, fiber tabs, ate veggies and fruit and nothing seemed to do the trick. So I resorted to a cheeseburger and fries and that did it! (Because of the loss of my gallbladder, too much fat will do that to me and also I don’t eat much red meat anymore and hamburger will have that effect on me.)

I’m a just a little more than halfway through rad. Today was number 14. Rad Dr said 25 treatments for me not 30. Which I am guessing was determined based on tumor size and placement. Radiation hasn’t been bad….until yesterday. I have again been constipated and started taking laxatives and stool softeners again to get ready for the second round of chemo. (I was trying not to have to resort to the burger and fries again) Nothing for days and then yesterday I finally had a bm. It felt like rocks and gravel coming out but was soft, skinny, and formed. The pain was intense but as mentioned, not like childbirth, because the pain goes away faster. I got through it and also the other bms that followed.

Taking baths in my whirlpool tub has been a godsend. Also aquaphor ointment which I slather on after each trip to the bathroom. I bought a portable bidet from Amazon and use that and Viva Paper towels to pat dry after each trip to the bathroom. My skin in the groin area has darkened but doesn’t look red or burned. I am wearing boxer shorts under loose cotton pants or skirts. I think I will be fine as long as I do all the self-care recommended here on the boards and listen to my body when it says rest. I spend a great deal of time sleeping and resting on the weekend. Sleep has never, ever been a problem for me.

I will update next week to let you know how it is going.

Marynb

Jo Joy said:

I am still in treatment
Hi there! You must be going through so much right now. I know that when I was first diagnosed that I had many, many concerns and anxiety until I started treatment a month later. For me it seemed I would get answers from the Drs to all my questions, but then that would lead to more questions. I used, and continue to use this discussion board. Pay close attention to what people on this board tell you to buy or have on hand BEFORE you start treatment. They also have tips and tricks from their own experience to help you through any possible side effects. Also please remember in all things that how your body reacts to treatment is unique for you. I read peoples stories on this board, prepared for the worst, and had faith for the best.

Let me introduce myself so you have a point of reference for what I’m about to tell you. I am currently in treatment. I am 47 and am otherwise very healthy. I am a Christian and my faith in God, and prayers of people that care about me, have made a way for me to successfully cope with treatment and manage my negative thoughts when they surface. I am still working at the moment and plan to be doing that through the next two weeks of radiation and the recovery period, and I am also taking it one day at a time. My Drs have been very accommodating and encouraging me to work as long, or even through the entire treatment, as I want.

I am also changing jobs at the end of next week. My new job is more financially stable, less stressful, and is a half a block away from my home. (I live in SoCal, so that in itself is a miracle! ) ) The hospital I am being treated at is a ten minute drive from my home and I am still driving myself to treatment every morning, and then 16 miles on the freeway, to work after that. Both of my employers know of my diagnosis and the timing of my treatment. The new job is willing to let me take time off or work part-time if the last bit of treatment and recovery gets too much for me to work. I start the new job with 2 weeks of sick leave and 3 weeks of vacation leave already established, as I am a Chief Financial Officer, and thus senior management.

I don’t have any other complications such as diabetes, overweight, HPV, HIV, cancer in my family genetics, etc. I ate all the right things, exercised, and maintained a healthy weight. I love veggies and fruit! I have none of the risk factors for this diagnosis. But it happened. I am attributing it to the stress at my present job. It has been constant unrelenting stress for the last two years. The only thing that has changed in my health for the last 5-10 years was I have had my gallbladder removed. Then I had a few incidences of what I would term as substantial rectal bleeding, even when I wasn’t constipated, and I knew something wasn’t right. The tumor was found on a colonoscopy and was 13mm in size so 1.3cm. I think my tumor staging was either T1 or T2 N0M0. It was also in the sphincter muscle. My doctors told me this was “immanently” curable with chemo and radiation. Surgery would only be required if after 6 weeks post treatment, that it still showed evidence of cancer. They want to avoid surgery if at all possible because that means a colostomy bag for the rest of life.

My second and final round of chemo with 96 hour pump begins in the morning. (Thursday) I will get it disconnected on Monday. With the first round of chemo the only side effects that I had was loss of taste about a week after the pump was disconnected which lasted about a week and a half. (Hated that part, even water tasted gross, and my appetite was fine. So I would get thirsty or hungry and didn’t have the satisfaction of the taste of anything) But make sure you drink tons and tons of water! It will flush the toxins out. I also experienced some severe constipation. I took laxatives, stool softeners, fiber tabs, ate veggies and fruit and nothing seemed to do the trick. So I resorted to a cheeseburger and fries and that did it! (Because of the loss of my gallbladder, too much fat will do that to me and also I don’t eat much red meat anymore and hamburger will have that effect on me.)

I’m a just a little more than halfway through rad. Today was number 14. Rad Dr said 25 treatments for me not 30. Which I am guessing was determined based on tumor size and placement. Radiation hasn’t been bad….until yesterday. I have again been constipated and started taking laxatives and stool softeners again to get ready for the second round of chemo. (I was trying not to have to resort to the burger and fries again) Nothing for days and then yesterday I finally had a bm. It felt like rocks and gravel coming out but was soft, skinny, and formed. The pain was intense but as mentioned, not like childbirth, because the pain goes away faster. I got through it and also the other bms that followed.

Taking baths in my whirlpool tub has been a godsend. Also aquaphor ointment which I slather on after each trip to the bathroom. I bought a portable bidet from Amazon and use that and Viva Paper towels to pat dry after each trip to the bathroom. My skin in the groin area has darkened but doesn’t look red or burned. I am wearing boxer shorts under loose cotton pants or skirts. I think I will be fine as long as I do all the self-care recommended here on the boards and listen to my body when it says rest. I spend a great deal of time sleeping and resting on the weekend. Sleep has never, ever been a problem for me.

I will update next week to let you know how it is going.

JoJoy
I am so glad that you are doing well. I hope that this last round of chemo goes by qucikly for you. You are in my prayers.

LaCh

Jo Joy said:

I am still in treatment
Hi there! You must be going through so much right now. I know that when I was first diagnosed that I had many, many concerns and anxiety until I started treatment a month later. For me it seemed I would get answers from the Drs to all my questions, but then that would lead to more questions. I used, and continue to use this discussion board. Pay close attention to what people on this board tell you to buy or have on hand BEFORE you start treatment. They also have tips and tricks from their own experience to help you through any possible side effects. Also please remember in all things that how your body reacts to treatment is unique for you. I read peoples stories on this board, prepared for the worst, and had faith for the best.

Let me introduce myself so you have a point of reference for what I’m about to tell you. I am currently in treatment. I am 47 and am otherwise very healthy. I am a Christian and my faith in God, and prayers of people that care about me, have made a way for me to successfully cope with treatment and manage my negative thoughts when they surface. I am still working at the moment and plan to be doing that through the next two weeks of radiation and the recovery period, and I am also taking it one day at a time. My Drs have been very accommodating and encouraging me to work as long, or even through the entire treatment, as I want.

I am also changing jobs at the end of next week. My new job is more financially stable, less stressful, and is a half a block away from my home. (I live in SoCal, so that in itself is a miracle! ) ) The hospital I am being treated at is a ten minute drive from my home and I am still driving myself to treatment every morning, and then 16 miles on the freeway, to work after that. Both of my employers know of my diagnosis and the timing of my treatment. The new job is willing to let me take time off or work part-time if the last bit of treatment and recovery gets too much for me to work. I start the new job with 2 weeks of sick leave and 3 weeks of vacation leave already established, as I am a Chief Financial Officer, and thus senior management.

I don’t have any other complications such as diabetes, overweight, HPV, HIV, cancer in my family genetics, etc. I ate all the right things, exercised, and maintained a healthy weight. I love veggies and fruit! I have none of the risk factors for this diagnosis. But it happened. I am attributing it to the stress at my present job. It has been constant unrelenting stress for the last two years. The only thing that has changed in my health for the last 5-10 years was I have had my gallbladder removed. Then I had a few incidences of what I would term as substantial rectal bleeding, even when I wasn’t constipated, and I knew something wasn’t right. The tumor was found on a colonoscopy and was 13mm in size so 1.3cm. I think my tumor staging was either T1 or T2 N0M0. It was also in the sphincter muscle. My doctors told me this was “immanently” curable with chemo and radiation. Surgery would only be required if after 6 weeks post treatment, that it still showed evidence of cancer. They want to avoid surgery if at all possible because that means a colostomy bag for the rest of life.

My second and final round of chemo with 96 hour pump begins in the morning. (Thursday) I will get it disconnected on Monday. With the first round of chemo the only side effects that I had was loss of taste about a week after the pump was disconnected which lasted about a week and a half. (Hated that part, even water tasted gross, and my appetite was fine. So I would get thirsty or hungry and didn’t have the satisfaction of the taste of anything) But make sure you drink tons and tons of water! It will flush the toxins out. I also experienced some severe constipation. I took laxatives, stool softeners, fiber tabs, ate veggies and fruit and nothing seemed to do the trick. So I resorted to a cheeseburger and fries and that did it! (Because of the loss of my gallbladder, too much fat will do that to me and also I don’t eat much red meat anymore and hamburger will have that effect on me.)

I’m a just a little more than halfway through rad. Today was number 14. Rad Dr said 25 treatments for me not 30. Which I am guessing was determined based on tumor size and placement. Radiation hasn’t been bad….until yesterday. I have again been constipated and started taking laxatives and stool softeners again to get ready for the second round of chemo. (I was trying not to have to resort to the burger and fries again) Nothing for days and then yesterday I finally had a bm. It felt like rocks and gravel coming out but was soft, skinny, and formed. The pain was intense but as mentioned, not like childbirth, because the pain goes away faster. I got through it and also the other bms that followed.

Taking baths in my whirlpool tub has been a godsend. Also aquaphor ointment which I slather on after each trip to the bathroom. I bought a portable bidet from Amazon and use that and Viva Paper towels to pat dry after each trip to the bathroom. My skin in the groin area has darkened but doesn’t look red or burned. I am wearing boxer shorts under loose cotton pants or skirts. I think I will be fine as long as I do all the self-care recommended here on the boards and listen to my body when it says rest. I spend a great deal of time sleeping and resting on the weekend. Sleep has never, ever been a problem for me.

I will update next week to let you know how it is going.

great info
Hello JoJoy,
Although everyone is different, your post was very informative for me in terms of side effects and what might happen. You know, I've had low moments since the initial diagnosis but they come and they pass and I can't say that I felt panicked or anxious at any time. Sad at times, and very sad at times, but as I said, it passes. I have my own belief system which is quite helpful, whatever the outcome. I'm similar to you in that the only risk factors that I had were chronic stress (from the death of a loved one 7 years ago, curiously, from cancer at the same age that I am) and a sedentary lifestyle, otherwise, I eat a good diet, very seldom eat meat, don't smoke or drink, am not overweight, have no family history, etc. In any case, although I'm not looking forward to the treatments, I know that the only way through this is just through it. I've read other posts that report minimal effects and others that report severe, life-changing ones and as a person with an oversensitive, over reactive physiology, I'm concerned about the latter for myself. That said, I can't change it, can't prepare for it and I think that the key for me right now is learning to be more comfortable with uncertainty, since when it really comes down to it, no one knows the answers (they only know the statistical answers, not anything that can definitively say what I'll experience, not in terms of side effects nor outcome). I'll try to cross bridges as I come to them, and not try to figure out how to cross bridges I've not yet encountered and might not ever encounter. I'll definitely buy the aquaphor you recommended. I read a post in response to another entry and the poster spoke of life changing effects from the radiation. Is that a worry for me? Well, yes, but since I can't know if I'm going to have it and more importantly, if I DID know (hypothetically) that I would, the question I have to ask myself is, "Would that change my chioce to go ahead with the radiation?" and the answer is No. So I'm trying to filter out the "What if" questions and just deal with that's actually before me at the moment. This website has proved enormously helpful, immeasurably helpful and I'll continue to use it and hopefully, have my own input to add for other people as I go through the treatments and in that way, maybe be able to offer some help as other people have helped me. I'm in the very very preliminary stages of what lies before me and have little to offer so far but that will change as things move forward. What I can tell you though is this: I'm not constipated in the typical way but what I've had a very slow colon all my life. My mother was the same way. For years I took laxatives routinely which solved the problem each time but didn't address the underlying problem. A few years ago I found a solution which might work for your constipation now; I intend to continue with it during my treatment. I use something called "Calm." It's magnesium citrate that you mix in water and drink. I take it three times a day and drink 3 liters of water throughout the day. It keeps my gut moving, it doesn't feel or act like a laxative but as something that just keeps things moving. Of course, a compromised colon presents it's own set of problems that I hope not to experience but that I might, and Calm might not work as time goes by, but my plan it to continue to use it because it's been THE solution to my slow colon. It also lowers blood pressure, helps with my hypertension and relaxes me so is a sleep aid (sleep continues to be a problem for me though, which is why I'm posting this at 3 in the morning. Being up for hours in the middle of the night and chronic fatigue have become the new normal for me over the last 7 years, and I think it contributed to getting the tumor; chronic lack of sleep is a stressor in itself.) Anyway, you can find Calm in any Health Food Store. I met with the medical oncologist for the first time yesterday and still have to meet with a radio oncologist. I'm guessing that I'll start the chemo and radiation in ten days but that's just a guess. Your story of being able to continue with your normal routines, more or less, was good to know. I have no work demands but was going to ask my sister to come to NY to be with me during treatments, but have now told her that that probably won't be necessary, based on what the medical oncologist said yesterday. Anyway, thanks for your very helpful post.

pializ

LaCh said:

great info
Hello JoJoy,
Although everyone is different, your post was very informative for me in terms of side effects and what might happen. You know, I've had low moments since the initial diagnosis but they come and they pass and I can't say that I felt panicked or anxious at any time. Sad at times, and very sad at times, but as I said, it passes. I have my own belief system which is quite helpful, whatever the outcome. I'm similar to you in that the only risk factors that I had were chronic stress (from the death of a loved one 7 years ago, curiously, from cancer at the same age that I am) and a sedentary lifestyle, otherwise, I eat a good diet, very seldom eat meat, don't smoke or drink, am not overweight, have no family history, etc. In any case, although I'm not looking forward to the treatments, I know that the only way through this is just through it. I've read other posts that report minimal effects and others that report severe, life-changing ones and as a person with an oversensitive, over reactive physiology, I'm concerned about the latter for myself. That said, I can't change it, can't prepare for it and I think that the key for me right now is learning to be more comfortable with uncertainty, since when it really comes down to it, no one knows the answers (they only know the statistical answers, not anything that can definitively say what I'll experience, not in terms of side effects nor outcome). I'll try to cross bridges as I come to them, and not try to figure out how to cross bridges I've not yet encountered and might not ever encounter. I'll definitely buy the aquaphor you recommended. I read a post in response to another entry and the poster spoke of life changing effects from the radiation. Is that a worry for me? Well, yes, but since I can't know if I'm going to have it and more importantly, if I DID know (hypothetically) that I would, the question I have to ask myself is, "Would that change my chioce to go ahead with the radiation?" and the answer is No. So I'm trying to filter out the "What if" questions and just deal with that's actually before me at the moment. This website has proved enormously helpful, immeasurably helpful and I'll continue to use it and hopefully, have my own input to add for other people as I go through the treatments and in that way, maybe be able to offer some help as other people have helped me. I'm in the very very preliminary stages of what lies before me and have little to offer so far but that will change as things move forward. What I can tell you though is this: I'm not constipated in the typical way but what I've had a very slow colon all my life. My mother was the same way. For years I took laxatives routinely which solved the problem each time but didn't address the underlying problem. A few years ago I found a solution which might work for your constipation now; I intend to continue with it during my treatment. I use something called "Calm." It's magnesium citrate that you mix in water and drink. I take it three times a day and drink 3 liters of water throughout the day. It keeps my gut moving, it doesn't feel or act like a laxative but as something that just keeps things moving. Of course, a compromised colon presents it's own set of problems that I hope not to experience but that I might, and Calm might not work as time goes by, but my plan it to continue to use it because it's been THE solution to my slow colon. It also lowers blood pressure, helps with my hypertension and relaxes me so is a sleep aid (sleep continues to be a problem for me though, which is why I'm posting this at 3 in the morning. Being up for hours in the middle of the night and chronic fatigue have become the new normal for me over the last 7 years, and I think it contributed to getting the tumor; chronic lack of sleep is a stressor in itself.) Anyway, you can find Calm in any Health Food Store. I met with the medical oncologist for the first time yesterday and still have to meet with a radio oncologist. I'm guessing that I'll start the chemo and radiation in ten days but that's just a guess. Your story of being able to continue with your normal routines, more or less, was good to know. I have no work demands but was going to ask my sister to come to NY to be with me during treatments, but have now told her that that probably won't be necessary, based on what the medical oncologist said yesterday. Anyway, thanks for your very helpful post.

LaCh. I too have only
LaCh. I too have only recently been diagnosed and due to start treatment on 18th December. Had PICC line inserted 2 days ago. We have a journey ahead of us for sure. I am also learning to adapt to all the uncertainty. I have lymph node involvement in pelvic area so I guess at stage 3 although oncologist had not told me as yet. I think stress has played a massive part in the development of this cancer. About 4 years ago I was under considerable unresolvable stress plus having a very sedentary job (mental health therapist). There are days when I feel OK about this, that it is doable , then others.....well, you know what I mean! Anyway, I have come to realise that to survive this cancer I just have to go with the flow, and deal with whatever consequences the treatment has on my body as they arise. I have taken note of the fantastic people on this site and also Macmillan who are so ready and willing to help us newbies. Keep posting! It's good to share. Liz x

mp327

pializ said:

LaCh. I too have only
LaCh. I too have only recently been diagnosed and due to start treatment on 18th December. Had PICC line inserted 2 days ago. We have a journey ahead of us for sure. I am also learning to adapt to all the uncertainty. I have lymph node involvement in pelvic area so I guess at stage 3 although oncologist had not told me as yet. I think stress has played a massive part in the development of this cancer. About 4 years ago I was under considerable unresolvable stress plus having a very sedentary job (mental health therapist). There are days when I feel OK about this, that it is doable , then others.....well, you know what I mean! Anyway, I have come to realise that to survive this cancer I just have to go with the flow, and deal with whatever consequences the treatment has on my body as they arise. I have taken note of the fantastic people on this site and also Macmillan who are so ready and willing to help us newbies. Keep posting! It's good to share. Liz x

To LaCh and pializ--
After reading your posts, I just want to say you both are heading into this with the right attitudes. You already know that there will be good days and bad days, both physically and emotionally, but you are ready to handle things as they come, which is really the only thing one can do in this situation. Be in the moment and don't worry about what is yet to come or hasn't happened yet. You will get through this one day, one minute at a time. I wish you both all the very best.

LaCh

pializ said:

LaCh. I too have only
LaCh. I too have only recently been diagnosed and due to start treatment on 18th December. Had PICC line inserted 2 days ago. We have a journey ahead of us for sure. I am also learning to adapt to all the uncertainty. I have lymph node involvement in pelvic area so I guess at stage 3 although oncologist had not told me as yet. I think stress has played a massive part in the development of this cancer. About 4 years ago I was under considerable unresolvable stress plus having a very sedentary job (mental health therapist). There are days when I feel OK about this, that it is doable , then others.....well, you know what I mean! Anyway, I have come to realise that to survive this cancer I just have to go with the flow, and deal with whatever consequences the treatment has on my body as they arise. I have taken note of the fantastic people on this site and also Macmillan who are so ready and willing to help us newbies. Keep posting! It's good to share. Liz x

To Pializ
yes, I think "going with the flow" can only serve one well. I'm someone who questions, challenges and doubts doctors, (which often creates problems) and I have a rather low opinion of them in general (with some very notable exceptions, blessedly, my gastroenterologist and my medical oncologist), but in general, doctors, in whom I generally have no trust, are the very same people that I now HAVE to trust. I'm coming to realize that just putting one foot ahead of the other is all I have to do. Strangely, I feel good mentally (maybe I'll feel differently once treatments start, I don't know). That's not to say that I have my low moments, and not to say that I won't have plenty more, but they come and they pass. I think that, for me, the key is (as I said in an earlier post) patience and the acceptance of uncertainty. And while I don't want to die and I'm going to do what I can do to avoid it, because of what I believe comes after, if it turns it that way, I'll try to face it with as much equanimity as I can, believing that it's just another transition in a lifetime of transitions. I do have my moments, as I said, but... I feel ok and hope to be able to contribute to this site for others who follow after me.

LaCh

mp327 said:

To LaCh and pializ--
After reading your posts, I just want to say you both are heading into this with the right attitudes. You already know that there will be good days and bad days, both physically and emotionally, but you are ready to handle things as they come, which is really the only thing one can do in this situation. Be in the moment and don't worry about what is yet to come or hasn't happened yet. You will get through this one day, one minute at a time. I wish you both all the very best.

To mp327
Thanks mp327. You know, for years there have been things that I wanted to acheive for myself, things related to how I conduct myself in the world. Well, the cancer seems to be a sort of catalyst that's enabling me to move towards those things in a rapid, focused way. I'm not happy that this is happening but in a strange way, I see it as a real opportunity that might enable me to acheive the things that I've wanted to acheive, but have so far failed to do. A sort fast track to what I want to acheive, if I take advantage of the situation in that way. This site has been an absolutly excellent resource which I'll continue to use. Thanks for all the support, to you and to everyone who's responded to my initial post. It's just been invaluable.

Marynb

LaCh said:

To Pializ
yes, I think "going with the flow" can only serve one well. I'm someone who questions, challenges and doubts doctors, (which often creates problems) and I have a rather low opinion of them in general (with some very notable exceptions, blessedly, my gastroenterologist and my medical oncologist), but in general, doctors, in whom I generally have no trust, are the very same people that I now HAVE to trust. I'm coming to realize that just putting one foot ahead of the other is all I have to do. Strangely, I feel good mentally (maybe I'll feel differently once treatments start, I don't know). That's not to say that I have my low moments, and not to say that I won't have plenty more, but they come and they pass. I think that, for me, the key is (as I said in an earlier post) patience and the acceptance of uncertainty. And while I don't want to die and I'm going to do what I can do to avoid it, because of what I believe comes after, if it turns it that way, I'll try to face it with as much equanimity as I can, believing that it's just another transition in a lifetime of transitions. I do have my moments, as I said, but... I feel ok and hope to be able to contribute to this site for others who follow after me.

LaCh

I am glad you are in a positive place with this diagnosis. I was told that the chances of dying from this cancer, after treatment, are very low. I guess you might have to think about that, but for me, dying was not part of my thought process. You will go through treatments and all will be well. All will be well.

LaCh

Marynb said:

LaCh

I am glad you are in a positive place with this diagnosis. I was told that the chances of dying from this cancer, after treatment, are very low. I guess you might have to think about that, but for me, dying was not part of my thought process. You will go through treatments and all will be well. All will be well.

maryb
I think that for me, those concerns were connected to the treatments, more than the disease. That said, I'm feeing ok with whatever unfolds. Well, tht's not exactly true either. I'm not obsessing over it, but incontinence is a concern. I'll just try to handle whatever comes with whatevr balance I can, which is my main ultimate goal. But I like your mantra and will remember it throughout the road ahead.....

Lorikat

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.

I had a picc line. The
I had a picc line. The hardest part was covering it up to shower. Cling wrap worked the best for me. Line came out the last day of treatment. Again, I am one year NED and my tumor was 5cm stage two. Lorie

Marynb

LaCh said:

maryb
I think that for me, those concerns were connected to the treatments, more than the disease. That said, I'm feeing ok with whatever unfolds. Well, tht's not exactly true either. I'm not obsessing over it, but incontinence is a concern. I'll just try to handle whatever comes with whatevr balance I can, which is my main ultimate goal. But I like your mantra and will remember it throughout the road ahead.....

LaCh
Honestly, incontinence is very rare and I have had no such problems. Increased frequency after the treatment and diarreah for awhile. Never incontinence. That would be a very rare consequence of treatment. It is fine to know the worst case scenarios, but think positive thoughts. You are in a battle that you plan to win! I do understand your fears. I have had cancer twice, so of course negative thoughts try to creep into my psychi. When that happens, get back into battle mode and remember the goal here is wellness. Prayer works for me. If you are not a believer, meditation helps too. Try to visualize yourself healthy, finished with treatment, and moving on to your next adventure! All will be well.

LaCh

Marynb said:

LaCh
Honestly, incontinence is very rare and I have had no such problems. Increased frequency after the treatment and diarreah for awhile. Never incontinence. That would be a very rare consequence of treatment. It is fine to know the worst case scenarios, but think positive thoughts. You are in a battle that you plan to win! I do understand your fears. I have had cancer twice, so of course negative thoughts try to creep into my psychi. When that happens, get back into battle mode and remember the goal here is wellness. Prayer works for me. If you are not a believer, meditation helps too. Try to visualize yourself healthy, finished with treatment, and moving on to your next adventure! All will be well.

question for Marynb and others regarding sphincter control
I just got off the phone with my gastroenterologist who, I swear, is an angel that fell off a cloud. But... here's the thing. She wanted me to have a surgeon lined up in case at the end of the chemo and radiation it was required. In other words, arrange it all now so that I wont have to then, and if he's not needed, great. So I have an appointment tomorrow. Here's my question. Was your tumor on the sphincter? Was it about 3 cm? In a way I hope so, because if you didn't lose sphincter control, despite those factors, there's a chance that I won't either. From what I umderstand, location and size are loosely predictive factors in losing or not losing bowel control. I know that you feel that incontinence is rare, but if you're irradiating the sphincter and surrounding tissue, is seems to me (and from what I've been told) that incontinence is actually not all that rare, nor is the need for a colostomy. So I guess what I'm asking is whether your tumor was near or on the sphincter, if it was around 3 cm and if, despite those factors, you didn't lose bowel control or need a colostomy. And even though everyone's different and every body responds differently, I'd like to know about others' experiences with treatment and incontinence. Thanks to all for your input.

mp327

LaCh said:

question for Marynb and others regarding sphincter control
I just got off the phone with my gastroenterologist who, I swear, is an angel that fell off a cloud. But... here's the thing. She wanted me to have a surgeon lined up in case at the end of the chemo and radiation it was required. In other words, arrange it all now so that I wont have to then, and if he's not needed, great. So I have an appointment tomorrow. Here's my question. Was your tumor on the sphincter? Was it about 3 cm? In a way I hope so, because if you didn't lose sphincter control, despite those factors, there's a chance that I won't either. From what I umderstand, location and size are loosely predictive factors in losing or not losing bowel control. I know that you feel that incontinence is rare, but if you're irradiating the sphincter and surrounding tissue, is seems to me (and from what I've been told) that incontinence is actually not all that rare, nor is the need for a colostomy. So I guess what I'm asking is whether your tumor was near or on the sphincter, if it was around 3 cm and if, despite those factors, you didn't lose bowel control or need a colostomy. And even though everyone's different and every body responds differently, I'd like to know about others' experiences with treatment and incontinence. Thanks to all for your input.

LaCh
While I can totally understand your concerns, I can only speak from my own experience. I'm not exactly sure where my tumor was located in regards to the sphincter. The only time I experienced incontinence, other than the occasional "didn't make it to the toilet in time," was during the last 2 weeks of treatment and for a short time afterwards. I find it a little concerning that your one doctor is already talking surgery/colostomy because you and he/she may not know for a few months if your tumor was resolved or if some remains and how you will respond to the treatment, meaning whether or not you will have incontinence issues. You may have some short-term incontinence issues, just as I did, and I would hate to see you rushed into having surgery that isn't necessary. This is just my opinion, but if one of my doctors had discussed surgery with me even before I'd had chemo/rad, it would have scared the crap (sorry!) out of me. Also, I have been on three support forums/blogs for 4 years now and, to the best of my recollection, none of the people I've communicated with who have colostomies got them because of incontinence. Rather, it has been a case of the tumor not responding to the chemo/rad or a recurrence. I don't want you to be dreading something that may not have to happen, as this treatment has a high rate of success.

I might add that I am a survivor of over 4 years now and I just had my 6-month exam with my colorectal doctor this morning. Everything looks good according to her. I never once talked to her about surgery and here I am, heading towards my 5th. year anniversary. I believe you will also see that milestone and many anniversaries after!

LaCh

mp327 said:

LaCh
While I can totally understand your concerns, I can only speak from my own experience. I'm not exactly sure where my tumor was located in regards to the sphincter. The only time I experienced incontinence, other than the occasional "didn't make it to the toilet in time," was during the last 2 weeks of treatment and for a short time afterwards. I find it a little concerning that your one doctor is already talking surgery/colostomy because you and he/she may not know for a few months if your tumor was resolved or if some remains and how you will respond to the treatment, meaning whether or not you will have incontinence issues. You may have some short-term incontinence issues, just as I did, and I would hate to see you rushed into having surgery that isn't necessary. This is just my opinion, but if one of my doctors had discussed surgery with me even before I'd had chemo/rad, it would have scared the crap (sorry!) out of me. Also, I have been on three support forums/blogs for 4 years now and, to the best of my recollection, none of the people I've communicated with who have colostomies got them because of incontinence. Rather, it has been a case of the tumor not responding to the chemo/rad or a recurrence. I don't want you to be dreading something that may not have to happen, as this treatment has a high rate of success.

I might add that I am a survivor of over 4 years now and I just had my 6-month exam with my colorectal doctor this morning. Everything looks good according to her. I never once talked to her about surgery and here I am, heading towards my 5th. year anniversary. I believe you will also see that milestone and many anniversaries after!

mp327
Well, the truth is that I wanted to discuss all the possibilites and I'm the one who raised these issues and really, no one is urging a colostomy it's jut that I like to know all the possibilities. I wouldn't quantify what I'm feeling as dread, but concern. And you're right, none of these scenarios are a sure bet. As for rushing me into surgery, the decision would be mine alone and I'm not sure what I'd decide but the truth is, that point is about 100 steps from where I am now; I was just wondering about other people's experience. The funny thing is, if I become worried about something or find myself thinking a lot about one thing or another, it goes like that for a period of time and then just sort of dissipates. It might return or it might not but if it does, it lasts a while and then just sort of goes away. It's a curious (but welcome) thing. Maybe my brain gets bored with it or maybe I just run out of the gas needed to drive the worry engine. Either way, it's a good thing. Anyway, as always, thanks for the input.

Marynb

LaCh said:

question for Marynb and others regarding sphincter control
I just got off the phone with my gastroenterologist who, I swear, is an angel that fell off a cloud. But... here's the thing. She wanted me to have a surgeon lined up in case at the end of the chemo and radiation it was required. In other words, arrange it all now so that I wont have to then, and if he's not needed, great. So I have an appointment tomorrow. Here's my question. Was your tumor on the sphincter? Was it about 3 cm? In a way I hope so, because if you didn't lose sphincter control, despite those factors, there's a chance that I won't either. From what I umderstand, location and size are loosely predictive factors in losing or not losing bowel control. I know that you feel that incontinence is rare, but if you're irradiating the sphincter and surrounding tissue, is seems to me (and from what I've been told) that incontinence is actually not all that rare, nor is the need for a colostomy. So I guess what I'm asking is whether your tumor was near or on the sphincter, if it was around 3 cm and if, despite those factors, you didn't lose bowel control or need a colostomy. And even though everyone's different and every body responds differently, I'd like to know about others' experiences with treatment and incontinence. Thanks to all for your input.

LaCh
I know you really like your gastroenterologist and she may be a very nice person, but I am wondering how much anal cancer she has treated. I started off with a colorectal surgeon because my gastro thought I had a hemmorhoid. As soon as the surgeon examined me he suspected cancer. He then did a biopsy in the hospital. My tumor was very near the spincter and was 2.5 cm. Once I was diagnosed, I went to a comprehensive hosptial which was top rated for cancer treatment. There, I saw a team of doctors, which included a surgeon. Never, at anytime was a colostomy discussed. I never lost any control at all, but had severe diarreah the last 2 weeks of treatment and for a short time afterwards. Nobody ever discussed me dying from this cancer, nor did I consider it a possibility. I was told that anal cancer has a very high cure rate, even when there is a recurrence.

If you are going to one of the reputable hospitals in NYC, you will have a team of doctors, which will include a colorectal surgeon, who will do a biopsy, folliw up treatment with scopes, maybe do a colonoscopy, etc. The team will include an oncologist, radiologist, and a surgeon. They will work together and consult. For me, they are all in the same cancer center.

I have no involvolvement at all with a gastroenterologist.

Once you get a good team in place, some of your fears will be allayed. I really highly suggest, at this point, you get to the best cancer hospital that
your insurance will cover. It is so important. Then you can put your energy and efforts into fighting this cancer. You need to think positively and you will be able to, once you have an experienced team in place.


I would also suggest that you let your sister come and be with you once treatment starts. It is just nice to have omeone who loves you around.

mp327

LaCh said:

mp327
Well, the truth is that I wanted to discuss all the possibilites and I'm the one who raised these issues and really, no one is urging a colostomy it's jut that I like to know all the possibilities. I wouldn't quantify what I'm feeling as dread, but concern. And you're right, none of these scenarios are a sure bet. As for rushing me into surgery, the decision would be mine alone and I'm not sure what I'd decide but the truth is, that point is about 100 steps from where I am now; I was just wondering about other people's experience. The funny thing is, if I become worried about something or find myself thinking a lot about one thing or another, it goes like that for a period of time and then just sort of dissipates. It might return or it might not but if it does, it lasts a while and then just sort of goes away. It's a curious (but welcome) thing. Maybe my brain gets bored with it or maybe I just run out of the gas needed to drive the worry engine. Either way, it's a good thing. Anyway, as always, thanks for the input.

LaCh
In the very beginning of my journey I asked my colorectal doctor what would happen if the cancer came back. She looked at me and said "then you'll have surgery--but it's NOT coming back" very emphatically. We have never talked about it since and I don't intend to.

As I said before, I had some issues with incontinence, mostly because I had severe diarrhea and I just had no control sometimes. I have no more problems with that unless I do not listen to my little voice that says go to the bathroom!

Mary makes a good point. I really don't think a gastro doc is the best specialist to be handling a case of anal cancer. I have always felt that a colorectal surgeon is the most appropriate type of doctor to see. I've never seen a gastro doc for anything ever.

eihtak

LaCh
Hi, I hope I didn't add to your fears by telling you that I have a colostomy. It is rare that that is the case for most anal cancer treatments. By the time I was diagnosed my tumor was 5cm and I was severely anemiac. My Rb count was only 2 (should be in the area of 15) My doctor said he didn't feel I would survive chemo/rad without it, and we were (maybe still) hoping to reverse when recovered, but then I was diagnosed with breast cancer. Looking back, I should have gone in over a year before I did with the symptoms I was having, but life was happening and I just kept functioning as my tumor and overall health declined. ( That being said, my husband was having a bone marrow transplant and my mind was with him ) Anyway, the point I'm trying to make is that I was in such poor health to start with, you sound as though you are starting from a better place. My guess is you will get through this with no surgery and only short term control issues. Thinking of you and all who are beginning this journey.