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newly diagnosed, looking for info

LaCh
Posts: 512
Joined: Dec 2012

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's picture
mp327
Posts: 2894
Joined: Jan 2010

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.

LaCh
Posts: 512
Joined: Dec 2012

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.

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

I was told by numerous doctors (even a top notch colo-rectal surgeon) that if he had this particular type of cancer, he would go to Memorial Sloan Kettering. My experience with MSK as it has been nothing short of spectacular care, whether it is someone taking blood, or answering phones or one of their beautiful rock star doctors. Everything top to bottom is thoughtful for the cancer patient. I am close to the City but we have a satellite in Sleepy HOllow where I took many of my treatments. My doctor is Dr. Weiser in the City. I would send my materials in if I were you. You can't go wrong there.

Good luck,

Sandy

Marynb
Posts: 1134
Joined: Aug 2012

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
Posts: 512
Joined: Dec 2012

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
Posts: 1134
Joined: Aug 2012

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.

LaCh
Posts: 512
Joined: Dec 2012

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.

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

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

LaCh
Posts: 512
Joined: Dec 2012

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.

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

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

eihtak
Posts: 840
Joined: Oct 2011

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.

LaCh
Posts: 512
Joined: Dec 2012

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.

7243
Posts: 223
Joined: Feb 2011

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
Posts: 512
Joined: Dec 2012

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's picture
mp327
Posts: 2894
Joined: Jan 2010

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.

Marynb
Posts: 1134
Joined: Aug 2012

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
Posts: 512
Joined: Dec 2012

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.

Marynb
Posts: 1134
Joined: Aug 2012

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!

7243
Posts: 223
Joined: Feb 2011

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.

LaCh
Posts: 512
Joined: Dec 2012

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).

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

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

mxperry220
Posts: 360
Joined: Mar 2011

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

LaCh
Posts: 512
Joined: Dec 2012

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.

Dog Girl
Posts: 100
Joined: Sep 2010

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.

LaCh
Posts: 512
Joined: Dec 2012

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
Posts: 39
Joined: Oct 2012

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! :o) ) 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
Posts: 1134
Joined: Aug 2012

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
Posts: 512
Joined: Dec 2012

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
Posts: 258
Joined: Nov 2012

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

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mp327
Posts: 2894
Joined: Jan 2010

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
Posts: 512
Joined: Dec 2012

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.

LaCh
Posts: 512
Joined: Dec 2012

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.

Marynb
Posts: 1134
Joined: Aug 2012

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
Posts: 512
Joined: Dec 2012

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.....

Marynb
Posts: 1134
Joined: Aug 2012

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
Posts: 512
Joined: Dec 2012

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's picture
mp327
Posts: 2894
Joined: Jan 2010

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
Posts: 512
Joined: Dec 2012

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.

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mp327
Posts: 2894
Joined: Jan 2010

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.

Marynb
Posts: 1134
Joined: Aug 2012

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.

AZANNIE
Posts: 386
Joined: Mar 2011

My tumor was larger than 3 cm and very near the sphincter, in fact it may have been partially in it. I had 30 radiation treatments and 2 round of chemo. I had diarrhea for awhile and sometimes didn't make it to the bathroom in time. I'm 18 months post treatment and doing pretty well - no incontinence and no surgery. I recently had a 6 month check up and tests were clear.
Wishing you the best! I know it's overwhelming.

Ann

LaCh
Posts: 512
Joined: Dec 2012

This is good to know; your tumor size and location sound similar to mine and your outcome sounds good. Very good to know, thanks. I wouldn't say that I feel overwhelmed, just dealing with things as they come. Not scared but concerned, not depressed but not bubbling over with laughter, not anxious but concerned. As I mentioned a little earlier in another post, my concerns seem to reach a certain level, a crescendo of sorts and then sort of go away. That's not to say that they don't return; they do or sometimes they do but I don't seem able to maintain a constant, unrelenting level of worry, which is a good thing. I'm not like the Edvard Munch painting The Scream but neither am I like the guy in Mad Magazine asking "What? Me worry?" Thanks for your post; I found it quite helpful.

LaCh
Posts: 512
Joined: Dec 2012

double posted, removed.

eihtak
Posts: 840
Joined: Oct 2011

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.

LaCh
Posts: 512
Joined: Dec 2012

No, no, you didn't add to my fears. I really want to know about the gamut of experiences. I find the unknown more problematic than unpleasant knowns (do I sound like Rumsfeld with his Known Unknowns speech?). I'm sorry to hear about your extreme situation with your husband and you so sick at the same time and with not one cancer but two. It's always a bit mind boggling when you hear such stories and the life events that can combine to become like a giant wave at the ocean. You get knocked down, you get tossed around and hopefully, you get up and look back on it. I admire your strength. I'm humbled by your strength. For my part, I feel like this situation has the potential to bring out the best or the worst in me, and the choice is mine as to which one it is. Thank you for your post.

daisy62
Posts: 7
Joined: Nov 2012

I am sorry to hear about your diagnosis. I guess it depends on the doctors as to what they suggest one should do. I opted for surgery, I had a colostomy 8 weeks ago along with two lymph nodes removed (showed active). After a discussion with my doc we decided to have all the lymph nodes on my right side from my groin to the middle of my thigh removed. Had surgery last Friday.

Went for my post-op today, the results from the biopsy were back. Good news, one lymph node was beginning to show active (not the good news). The good news is that it worked out making the decision to remove all of the lymph nodes. At this point I go to the oncologist and determine how often I will need to be tested. No chemo or Radiation. I chose to go at this very aggressively, I went to 3 doctors to make sure I was making the right decision.

God Bless,

daisy

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I am sorry you had to be here. I am glad you are doing well now. Do you mind if I ask where you were treated and what stage you were? I am wondering if you are in USA? Surgery was never once discussed as an option for me.

daisy62
Posts: 7
Joined: Nov 2012

I am in Arizona. Again, I chose to go at this very aggressively. All three doctors said that with this type of cancer chemo and/or radiation don't always work. I am not the type of person that want to wait and see. I just want this out of me and go on. One of the doctors was from the Mayo clinic in arizona.

Marynb
Posts: 1134
Joined: Aug 2012

I am really surprised. I was never offered that option. I am sure my doctors knew that I did not want to take any chances. The topic of surgery never was presented to me and I went to top rated hospital. I wonder why?

Marynb
Posts: 1134
Joined: Aug 2012

I am really surprised. I was never offered that option. I am sure my doctors knew that I did not want to take any chances. The topic of surgery never was presented to me and I went to top rated hospital. I wonder why?

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