New Member - Starting treatment Monday
Hello everyone! I've been reading the boards and getting lots of information. Thank you all for sharing! I was diagnosed with anal cancer on 1/11/18 when my surgeon biopsied my "hemorrhoid." I've had a PET scan, met with my oncologist, met with the radiation oncologist, and will start treatment this coming Monday, 2/12/18. Chemo and radiation. I'm Stage 2, squamous cell. Oh and I had a port put in two days ago. I guess I'm all set to get after this and get to the other side. It's pretty scary and a bit surreal. Not sure I'd believe I have cancer if I hadn't seen the pathology report myself. It's nice to have a place where everyone knows what you're going through.
Sherie
Comments
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smc0057
Hi Sherie and welcome here, although I'm sorry a diagnosis of anal cancer brought you here. I'm glad you've found this group--there's lots of support, advice and great information here that will help you get through this! I am probably one of the "old timers" on here--diagnosed in June 2008 with anal cancer that was right on the line between stage 1 and 2. I had 2 rounds of chemo (Mitomycin and 5FU) along with 30 radiation treatments. I'm still here and doing well, so I hope that gives you lots of hope and encouragement.
Since you've already been doing some reading on this site, you probably already know a lot more prior to the start of treatment than I did. I was clueless! I hope the information you've gleaned so far has been helpful to you, but I urge you to ask questions that you may have. We are here to help you. I do hope your doctors/nurses have given you a lot of information and also prescriptions for any medications you may need ahead of time so that you have them on hand. Do not be afraid to take the meds! Also, be sure to stay well-hydrated--drink, drink, drink--water is best! The moment any issue pops up that appears to be a side effect, let your doctors/nurses know. The sooner you try to get on top of it, the better. One of the most common side effects is mouth sores, which may be avoided by swishing frequently with a mixture of water and either baking soda or salt. Beginning this at the start of treatment may ward off mouth sores totally, so I highly recommend it. Diarrhea can be a real issue as well, so make sure you have some Imodium on hand. Your appetite may tank, so eat well as long as you are able. After that, eat what tastes good to you and try to get protein in every meal or snack.
I'm sure in all of your reading you've already realized most of the above, but being prepared is key to getting through this with the least amount of side effects. Take this one day at a time, get plenty of rest, ask family and friends for help when you need it, and don't be afraid to ask anything from those of us on this site who have been there, done that. I wish you all the very best as you begin treatment next week. Keep your eye on the finish line and soon you'll be crossing it!
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Good Luck Sheri You Can Do It!
Sheri - I was diagnosed with Stage II also, last fall, and treated Nov 8 thru Jan 2 of this year. I too thought I had a small hemmorhoid and was shocked it was anal cancer. I completed the chemo - radiation in about 8 weeks. It's a rough road but compared with so many other people I know who went through months and months (and sometimes years) of treatment it is not bad in retrospect. Make sure you have all the meds for nausea, diarrhea, etc that your oncologist and radiologist suggest NOW rather than while treatment intensifies. Get CeraVe lotion and lather it on butt, upper leg area a lot. I had to go to cancer center everyday for extra fluids for the last 2 or 3 weeks so I can't stress enough to drink gallons of water and electrolytes. The burns get bad so don't be surprised if they stop the daily radiation once and awhile to let your body heal. So what you think might be 6 weeks of radiation (if you are having 30 rounds) might turn into 8 or so. I'm five weeks out of treatment now and feeling better every day except for fatigue. Everyone is different, but I am bouncing back better than both my doctors expected. I lost 20 pounds during treatment (chemo side effects) so your docs will keep close eye on your weight. You will be told to eat a very low fiber diet, which is boring as hell but you do not want to upset your gastro. But several boxes of Immodium! Good luck, and remember this is only a detour of what life throws at us. Be stong, stay on this site - it's a great source of information and caring people who have been through all this and more. - Heather, McHenry IL age 60
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Thanks!
Thanks to both of you for your welcome and kind comments and tips! I have a bunch of Immodium on hand and some Aquaphor cream (recommended by the radiation doctor). I had read about swishing with water and baking soda for the mouth sores, but didn't realize I should start that as soon as treatment starts. I will definitely do that! My treatment plan is two rounds of Mitomycin C and 5FU (with the take home pump) and 30 radiation treatments. My biggest worry is the skin burns and fatigue. I'm a cyclist. So OF COURSE I get this particular cancer on my bum. Grrr. But I'll do what I must and work my way through it. Appreciate you all so much. It's nice to have someone to talk to who totally understands what you are going through. My team has given me tons of info and instructions and numbers to call to report side effects. They have told me to call immediately so as to stay on top of things, as you both recommend.
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smc0057
You are most welcome for the information. I'm sure there will be more to come from lots of others in this group as you begin treatment. Just let us know what you need. I am glad you have found this site. I did not have the benefit of such a support group back in 2008--I didn't know there were others out there who were supporting each other--and I cringe thinking about someone going through this alone like I did.
It sounds like you have your aresenal ready. Having been very much into cycling myself many years ago, I can understand your concerns about after effects of the treatment. While I did some leisurely riding after treatment ended and I was healed, it was only for short rides (not like the century ride I did back in 1991!). I will tell you that I had no discomfort. Of course, padded cycling shorts are a must! I took up running a few years prior to my diagnosis and never picked up cycling again seriously. I am happy to say that I did run quite a few races after treatment, including a full marathon 3 1/2 years after treatment. I tell you this to let you know that this treatment will only kick your butt for a short time when you look at the big picture. For right now, focus on just getting through it, which you will. I think being in good physical condition prior to treatment (except for the pesky little "nut" in the butt), will work in your favor. I think you will recover nicely.
Take good care of yourself and good luck on Monday. This will all be okay!
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You Sound Ready!
Hi Sherie. I love your attitude, ready to get it started and over. Always keep your mind on the blessing of going through treatment that is truly considered curative ... I'll take some pain and discomfort for such an excellent prognosis. I had Stage II as well, in 2013. Same protocol except not as many radiation days, I did 26. Please add laxative to your arsenal (haha, "arsenal" is such an appropriate word, huh?) ESPECIALLY since you'll be prescribed opiod pain meds I'm sure. I felt like I spent 7+ weeks concentrating on "poop consistency managment," constantly evaluating meds, food type, food amount, hydration, physical activity, etc, etc., all in terms of how to get it out the other end with minimal trauma! I ended up having to take laxatives regularly because of the oxy. There was NO WAY I was going to let myself get constipated and have to push anything out. Welcome to this bizarre journey where half the time your mind is on lofty thoghts of survival and love and the meaning of life, and the other half on how to take care of your bum hole. It's crazy but it's totally doable!!!
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Sherie
Welcome to the site. Sorry you have to be here. You sound very on top of things and ready for treatment with a good attitude. I'm glad you found the site before treatment instead of a year later like I did! It is kind of surreal, I think most of us were shocked with the diagnosis. It is great to be able to compare notes with others who have had the exact same cancer and treatment since it is relatively rare. I don't personally know anyone who has had anal cancer but after finding this site I don't feel so alone. With all your cycling you sound like a go getter. Your biggest challange may be staying patient with yourself during recovery. You will get your energy back but it seems to take forever. Good luck and keep us updated if you can.
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It's like we're twins
I had my surgery Jan10, 2017 (Stage 2 anal cancer T3N0M0) and started my radiation and chemo on Valentine's Day last year. I made it through Monday -Friday radiation and chemo (I took Xeloda pills 3 day /3 night) i had very little side effects until the very LAST week in March, beginning of April when I suddenly develped a 102* fever had was admited to hospital for a week. My skin between my legs was sunburnt and blistered, hair feel out down there, but the doctors' got me through that horrible week) I found getting a washable pad for my bed was a godsend.(Found on Amazon) Take a dressing gown from the hospital because you'll need it when you go home. Easy to sleep in and to throw into the washer. you'll' appreciate the flap...LOL I used Aquaphor on my feet and thank goodness never devolped Neralgia, athough my hands and feet did turn very red. I did have dark stripes goin across my fingernails that have since grownout. I drove myself every where, have a 4 runner so it was easy to climb in and out being far off the ground. Carry a bag with babywipes, extra undies and a spare pair of pants just in case, ....AFTER treatment I still have the delicate dance of "too much/not enough fiber or stool softener" which has slowly become more infrequent. I had a colonoscopy On Monday (February 12, 2018 and doctor is amazed how quickly I healed and found no cancer or polyps or ANYTHING)
You'll think about your butt every day, every single day and pay more attention to your diet than you ever thought possible. I had no hair loss, on my head, until MONTHS after I finished treatment, but it just thinned and I stepped up my vitamins and used rogaine and it is almost back to normal. The doctor's can't tell you what kind of side effects you will have, because no one knows. I still have pain if I sit too long. The fatigue was horrible at first. I'd have 2 good days with great energy then be suddenly unable to get out of bed for 2 days. Those days are few and far between now. I go to the gym 5 days a week. Lost almost 30 pounds from the treatment (currently 5'7'' and 160lbs) but that's GOOD!! LOL I stll wear panty liners in my undies (because shyt happens)
. YOU WILL LIVE THROUGH IT! Feel free to contact me and ask me anything
Catherine, age 57
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Thanks for all the support
Thanks for all the support and comments and tips! Week 1 is done and went pretty well. Had some light nausea on days 3-4 of chemo pump, but the Zofran and Compazine handled that farily well. I have some mouth sores, but again, not crazy bad. I have my soda/salt/water rince and some Magic Mouthwash and that's helping a lot. But my lips are more sore than the inside of my mouth. Of course slathering them with lip balm all day long. I was pretty fatigued by the last two days the pump was on. When they took off the pump I got some IV anti-emetics and steroids. Those helped with the fatigue. We'll see how I do when they wear off! Radiation is OK for now. I think a bit of loose stool is starting but I'm ready with my Aquaphor at the first sign of any tenderness. And you are all right. My life revolves around my bum and poop. Good grief. Still feeling optimistic and looking forward to marking another week off my treatment list next week.
Sherie
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HeatherApril14HeatherApril14 said:Good Luck Sheri You Can Do It!
Sheri - I was diagnosed with Stage II also, last fall, and treated Nov 8 thru Jan 2 of this year. I too thought I had a small hemmorhoid and was shocked it was anal cancer. I completed the chemo - radiation in about 8 weeks. It's a rough road but compared with so many other people I know who went through months and months (and sometimes years) of treatment it is not bad in retrospect. Make sure you have all the meds for nausea, diarrhea, etc that your oncologist and radiologist suggest NOW rather than while treatment intensifies. Get CeraVe lotion and lather it on butt, upper leg area a lot. I had to go to cancer center everyday for extra fluids for the last 2 or 3 weeks so I can't stress enough to drink gallons of water and electrolytes. The burns get bad so don't be surprised if they stop the daily radiation once and awhile to let your body heal. So what you think might be 6 weeks of radiation (if you are having 30 rounds) might turn into 8 or so. I'm five weeks out of treatment now and feeling better every day except for fatigue. Everyone is different, but I am bouncing back better than both my doctors expected. I lost 20 pounds during treatment (chemo side effects) so your docs will keep close eye on your weight. You will be told to eat a very low fiber diet, which is boring as hell but you do not want to upset your gastro. But several boxes of Immodium! Good luck, and remember this is only a detour of what life throws at us. Be stong, stay on this site - it's a great source of information and caring people who have been through all this and more. - Heather, McHenry IL age 60
I too was diagnosed in November and my treatments stopped on January 9th. Your description of what happened to you sounds just like me. My fatigue is really getting to me. I get light headed and my legs flutter with weakness.
Melinda Olson age 61
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smc0057
I wish you the very best on your journey. Like others have said, ask questions on here which will help you greatly.
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MelindaAuntieWheezer said:HeatherApril14
I too was diagnosed in November and my treatments stopped on January 9th. Your description of what happened to you sounds just like me. My fatigue is really getting to me. I get light headed and my legs flutter with weakness.
Melinda Olson age 61
Hi Melinda - I am actually getting so much better all the sudden - last week or two. I can walk up flight of stairs without feeling like I'll faint! The support group I'm in is helping tremendously, through the Lance Armstrong Foundation at my local cancer center. Getting so much education about how to deal with "scanxiety," diet and nuitrition, intimacy and sex after cancer, exercise - so I would heartily recommend something like this to everyone who goes through treatment. The fatigue is biggest problem for sure and might never go away, but I'm getting used to the "new normal." I hope every day you will get healthier!
Heather
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You got this!!
Sheri,
I just went through the whole process myself. I had no issues with the chemo as it was only two weeks on the pump at the 2nd and 5th week. I know everyone is different but put in your head that the chemo will not be an issue. Try to eat as much as you can during the whole process even though you may lose you apetite during treatment it's importent to try and keep up your weight. I was 175 prior and had friends force feeding me shakes and I still dropped to a bit under 150. up to 156 this morning 9 weeks after treatment but a lot of mine was muscle weight from the gym. The radiation will not be an issue and you probably will not see any skin issues for a couple weeks. They gave me aquafor to put on my arse to keep the moisture in. If you have this optiion start using it right away but it needs to be washed off before your treatment. I was able to finish the radiation without stopping. I think you may get a little break in the middle or maybe that was just me because the middle was around thanksgiving and I had 4 days to heal some. The worst of my pain from the radiation came two weeks to the day after treatment. So curently I am going back each month so the doctor can do his digit test. The radiation destroys the cancer DNA and effects of this continue for up to 6 months. Once the radiation is done each day you do nt have any residual radiation in your body just cells that can;t reproduce and wil eventually die. Anyway, please reach out to your friends for support. I was supised how many people wanted to help you just have to ask. Best of luck with your treatment and we are all here for you.
SCUBAJOE
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Melinda and HeatherApril
My cancer treatment dates are similar to yours, just the years are different. I finished treatment on January 12, 2016. My last radiation treatment was actually while I was in the hospital with sepsis. I remember the terrible fatigue and discouraged feeling that it would not improve. But I can tell you two years later the burns heal, and ( much more slowly than you would like) your energy gets better. By spring break of that year I was able to travel and as a celebration our family and several other families -17 of us total- flew out to Las Vegas for spring break. I did not have my normal energy back but I was able to hike a mile in Death Valley and see the superbloom of wildflowers. I skipped Hoover Dam and the raft trip. I still had diarrhea and pain- I remember going out and buying softer toilet paper and making sure I had all my ointments. But my point is that by March you should be able to enjoy life again and it keeps getting better from here on out! Hang in there!
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Thanks Mollymaude!Mollymaude said:Melinda and HeatherApril
My cancer treatment dates are similar to yours, just the years are different. I finished treatment on January 12, 2016. My last radiation treatment was actually while I was in the hospital with sepsis. I remember the terrible fatigue and discouraged feeling that it would not improve. But I can tell you two years later the burns heal, and ( much more slowly than you would like) your energy gets better. By spring break of that year I was able to travel and as a celebration our family and several other families -17 of us total- flew out to Las Vegas for spring break. I did not have my normal energy back but I was able to hike a mile in Death Valley and see the superbloom of wildflowers. I skipped Hoover Dam and the raft trip. I still had diarrhea and pain- I remember going out and buying softer toilet paper and making sure I had all my ointments. But my point is that by March you should be able to enjoy life again and it keeps getting better from here on out! Hang in there!
Thanks for words of encouragement. We are traveling in April or May to California (from Illinois) and I want to do some hiking and exploring and have been worried I won't be able to keep up. Only 6-7 weeks ago I couldn't even think of this but I'm ready to book the trip! Need to focus on something other than end of March scans. I feel very good about them though - I used to be able to feel my tumor through vaginal wall and I truly can't feel it anymore. This cancer sucked in so many ways, but I think it also clarifies what's important in life and has helped me stop sweating the small stuff.
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HeatherApril
Yes you should do fine in your vacation- just be prepared to take a day off and rest if you need to. I hope you have a wonderful time! Keep us updated when you get the good news from your scans. All this does put things in perspective and I definitely found that to be a positive!
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Keep positive
I'm new here too with a different cancer diagnosis. I was diagnosed with anal cancer in 2008. My oncologist told me 3 years later that my surviving was not the outcome he expected. I was the first of his patients to survive after chemo and radiation. The cancer had not been staged but I assume it was stage 4. The chemo was hard on me; the radiation was not, not at the time. So, know that you will get through this and survive. Treatment is so much better now. You'll also lose all embarassment for the future. After having buns up in the air for many doctors, you just have to laugh. Good luck to you!!
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2 weeks completed
Hi everyone! You guys are all so great. Thanks for your stories and tips and encouragement. Today is the end of my first 2 weeks of treatment. My labs were good today, so the plan is to use the same chemo rx as the first time - will start the 2nd cycle on 12th March. Mostly I'm fatigued, but walking as much as the weather will allow (not too interested in going to walk indoors at the gym or mall with all the flu around this year). I miss my bike, but I know I'll get back to it eventually. The worst part is MY MOUTH! OMG. My bottom lip is like hamburger meat. So so sore. The inside of my mouth is much improved, so I'm hoping the lip will begin healing from here forward. That's the worst of my chemo side effects. A bit of diarrhea, but that was expected. My bum is just a little ouchy from the radiation right now. We shall see how that goes with time. I'm armed with ointments, lidocaine ointment, Aquaphor, and Fentanyl patches. LOL I feel like a pharmacy! Definitly have lost all modesty. My bum seems to be on display for all and sundry. LOL I've been working everyday, but took today off for a long weekend to regroup and rest.
Sherie
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Sherie
Thanks for the update on your progress. Sorry about your mouth, hopefully you are at the worst of it and your lip will start healing fast. I remember how long it took to eat with those darn mouth sores. It felt like a chore! I hope you have a nice weekend "off" from treatment.
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