anal cancer newbie
Hello.
I'm so glad to find this forum, writing and discussing is very therapeutic for me. I was recenlty diagnosed with anal cancer stage III A about 2 weeks ago from a biopsy. Since then, I've had blood work, ct scan, pet scan, and meetings with an oncologist and radiology. I've been sleeping pretty well, and my emotions come in waves. Of course I'm terrified and scared of the unknown future, but I'm hopeful and try to remain positive, take it step-by-step.
If you have any comments or advice, I would love to hear from you. 
Comments
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maggiesco
I am sorry you have to go through this treatment, but remember that so many others on this site have also and are doing quite well. It is difficult not to be on an emotional rollercoaster at this time, not knowing what to expect. Treatment certainly isn't any fun, but it is totally doable. I'm glad you are keeping a positive attitude. We are all here to help you with questions you may have--and you will have some. The folks who have been through this treatment give some of the best advice on how to handle side effects, so please speak up and let us know how we can help you.
You are asking for some advice upfront, so I will give you a few tips. One of the most important ones is to drink, drink, drink--water is very important and you must stay hydrated. You may lose weight during treatment because many people find that their appetite tanks (mine did), so if you are on the light side, try to eat well prior to treatment and if possible, put on a few pounds (should be easy with the holidays!). Be sure to ask your doctor(s) for prescriptions for pain meds so you'll have them on hand once treatment begins--and do not hesitate to take them! The same applies for nausea meds, which should be taken at the first onset of nausea for the most effectiveness. Be prepared for possible mouth tenderness or sores (a side effect of the chemo)--you may want to begin rinsing with a mix of baking soda or salt and water at the beginning of treatment to ward this off totally. Some people have used a cold pack to prevent or cut down on hair loss (another possible side effect), so ask your doctor or chemo nurse about using one during your infusions. You may reach a point during treatment where you do not feel like driving yourself to treatment, so have someone lined up in advance who can take you, should you not be up to it. Do not refuse any offers of help, whether it be cooking or housekeeping--letting relatives and friends help will be good for both you and them. I don't know if you work or not, but if so, talk to your superiors about the possibility of taking time off if needed--some people are able to continue working, some not.
That is all that comes to mind right now. I'm sure others will chime in with other suggestions. The bottom line is you can do this, you will get through it! Don't hesitate to ask for help, whether it's from those of us here, your family and friends, or your medical team. I wish you all the very best as you begin this journey. Please keep us posted on how things go for you.
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thanks with your kind reply,mp327 said:maggiesco
I am sorry you have to go through this treatment, but remember that so many others on this site have also and are doing quite well. It is difficult not to be on an emotional rollercoaster at this time, not knowing what to expect. Treatment certainly isn't any fun, but it is totally doable. I'm glad you are keeping a positive attitude. We are all here to help you with questions you may have--and you will have some. The folks who have been through this treatment give some of the best advice on how to handle side effects, so please speak up and let us know how we can help you.
You are asking for some advice upfront, so I will give you a few tips. One of the most important ones is to drink, drink, drink--water is very important and you must stay hydrated. You may lose weight during treatment because many people find that their appetite tanks (mine did), so if you are on the light side, try to eat well prior to treatment and if possible, put on a few pounds (should be easy with the holidays!). Be sure to ask your doctor(s) for prescriptions for pain meds so you'll have them on hand once treatment begins--and do not hesitate to take them! The same applies for nausea meds, which should be taken at the first onset of nausea for the most effectiveness. Be prepared for possible mouth tenderness or sores (a side effect of the chemo)--you may want to begin rinsing with a mix of baking soda or salt and water at the beginning of treatment to ward this off totally. Some people have used a cold pack to prevent or cut down on hair loss (another possible side effect), so ask your doctor or chemo nurse about using one during your infusions. You may reach a point during treatment where you do not feel like driving yourself to treatment, so have someone lined up in advance who can take you, should you not be up to it. Do not refuse any offers of help, whether it be cooking or housekeeping--letting relatives and friends help will be good for both you and them. I don't know if you work or not, but if so, talk to your superiors about the possibility of taking time off if needed--some people are able to continue working, some not.
That is all that comes to mind right now. I'm sure others will chime in with other suggestions. The bottom line is you can do this, you will get through it! Don't hesitate to ask for help, whether it's from those of us here, your family and friends, or your medical team. I wish you all the very best as you begin this journey. Please keep us posted on how things go for you.
thanks with your kind reply, mp327. why am i obessesed about the survival rates? i know each person responds differently, and this thought woke me up early. on one hand i feel good that this is treatalbe/hopefully will kill the cancer. on the other hand, the unknown and the undetailed survival statistics make me anxious.
my doctors told me to prepare myself for 6 weeks of treatment and 4 weeks of recovery. i might plan for 6 weeks of recovery. my work is pretty generous with time off and mediclal leave, my coworkers will help me figure it out soon.
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Maggie
Are your lymph nodes clear? I assume you've had good news on your scans and no mets were found?
My best advice is lay in supplies you will need before hand so you don't have to make an exhausting shopping trip when you don't feel good. I think I went about 3 mos without stepping foot in Walmart. Accept all the help you can get. I was on pain meds and different friends and family took me to radiation and that social interaction was really wonderful. Don't hesitate to call your team, even if it's after hours. Most of us don't want to "bother" anyone but if you get mouth sores on a weekend for example, you need a prescription for magic mouthwash now, not on Monday. Good luck and keep us updated.
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yesterday my oncologist saidMollymaude said:Maggie
Are your lymph nodes clear? I assume you've had good news on your scans and no mets were found?
My best advice is lay in supplies you will need before hand so you don't have to make an exhausting shopping trip when you don't feel good. I think I went about 3 mos without stepping foot in Walmart. Accept all the help you can get. I was on pain meds and different friends and family took me to radiation and that social interaction was really wonderful. Don't hesitate to call your team, even if it's after hours. Most of us don't want to "bother" anyone but if you get mouth sores on a weekend for example, you need a prescription for magic mouthwash now, not on Monday. Good luck and keep us updated.
yesterday my oncologist said i have stage 3A- the growth is around 5cm, and some activity near the lymph nodes (but doctor didnt's say clear).. so I'm not sure what that even means. I will probably send him an email to clarify. no mentions of mets.
thanks for the magic mouthwash recommendation! i will email my doctor today!
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my husband clarified that theMollymaude said:Maggie
Are your lymph nodes clear? I assume you've had good news on your scans and no mets were found?
My best advice is lay in supplies you will need before hand so you don't have to make an exhausting shopping trip when you don't feel good. I think I went about 3 mos without stepping foot in Walmart. Accept all the help you can get. I was on pain meds and different friends and family took me to radiation and that social interaction was really wonderful. Don't hesitate to call your team, even if it's after hours. Most of us don't want to "bother" anyone but if you get mouth sores on a weekend for example, you need a prescription for magic mouthwash now, not on Monday. Good luck and keep us updated.
my husband clarified that the lymph nodes on backside (sacral lymph nodes) are having activity but scans don't seem to have pelvis lymph nodes activitiy.
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Maggie
Good news that you have no mets. My understanding is that if you have activity in lymph nodes near the cancer they just go ahead and widen the field of radiation to take care of those too. My cancer was also 5 cm and with the standard treatment I have had NED (no evidence of disease) for almost 2 years. My treatment finished January 12, 2015. So I also know how the holidays are with this hanging over your head. Make the best of it- it will bring your family closer together.
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Oops wrong date
Correction: I finished treatment in Jan 2016! It seems like a long time ago!
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mollymaude
good for you, congrats!! i start treatment after new years. as i'm waiting i still have light bleeding (every few days); i guess the same sytmptoms are to be expected until after treatment? how did you feel (passing bowel movements) after treatment and reovery?
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Maggie
I don't want to overwhelm you right now with after effects of all this but you probably won't be quite the same after treatment and will have to adjust to a new "normal". It's different for everyone but I became lactose intolerant, get diarrhea with fatty foods, and still occasionally have blood in my stool. Salad can still give me diarrhea but slowly I have been able to add back most fruits and vegetables. I also get muscle spasms in my rectum at times and take a muscle relaxer a lot of nights to help with those. Another thing that surprised me was all the muscles in my pelvis tightened up after radiation- PT was helpful for that. You can also get vaginal stenosis from the radiation and you can read about that on other threads. If you haven't gone through menopause yet, the radiation puts you into menopause too so a few months after treatment you might get hot flashes. If you have an IUD in place get it out before treatment, mine got scarred in and had to be retrieved in a minor surgery. Those are all things I wish someone had told me before all this- I didn't find this site until about a year after treatment.
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mollymaudeMollymaude said:Maggie
I don't want to overwhelm you right now with after effects of all this but you probably won't be quite the same after treatment and will have to adjust to a new "normal". It's different for everyone but I became lactose intolerant, get diarrhea with fatty foods, and still occasionally have blood in my stool. Salad can still give me diarrhea but slowly I have been able to add back most fruits and vegetables. I also get muscle spasms in my rectum at times and take a muscle relaxer a lot of nights to help with those. Another thing that surprised me was all the muscles in my pelvis tightened up after radiation- PT was helpful for that. You can also get vaginal stenosis from the radiation and you can read about that on other threads. If you haven't gone through menopause yet, the radiation puts you into menopause too so a few months after treatment you might get hot flashes. If you have an IUD in place get it out before treatment, mine got scarred in and had to be retrieved in a minor surgery. Those are all things I wish someone had told me before all this- I didn't find this site until about a year after treatment.
my radiation doc mentioned vaginal stenois, infertility, menopause. and yes, i know it is part of the recovery and i'm just trying to take everything step-by-step and look forward to a bright, long, and hopefully healthier future.
my docs told me 6 weeks for the treatment and 4 weeks for recovery. i might give myself 6 weeks for recovery. however, someone told me that i need to take a year off for recovery, which would be ideal, but i work and my employers have a generous medical leave plan, but nothing that covers and guarantees my job for up to a year. do you work or did you during your treatment/recovery?
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maggiesco
Your radiation oncologist is providing you with accurate information; as he has mentionned vaginal stenosis, you should ask him or hs nurse about vaginal dilators.Some centers provide them, or they can be ordered.* You might begin to use them before treatment starts; some women use them during treatment, but that might be too painful, but definitely after treatment; there are also physical therapists who specialize in pelvice floor therapy. this is all jumping the gun, but goood to be aware of,
I think the dilator issue is important.* I just have the dilators, not the whole kit. I think you can probably order the dilators separately https://www.vaginismus.com/
I really doubt that you will need to take off a year for recovery. You drs estimate seems reasonable. You may have some lingering bladder and bowel issues, but you should be able to slowly resume regular activities.
It may depend on where you are being treated, but my biggest source of homecare information and support came from the nurses; I was in constant communication with a teriffic nurse practitioner via the electronic health system. I saw the Drs , but the nurse supplied me with creams and other things, and was always available through the EHR.. So bond with a nurse!
I also had some consultations with the dietician at the cancer center. Another helper was the social worker who provided me with info on local resources(transportation, meal deliveries,etc--if needed) The American Cancer Society often has volunteers who will drive you to and from treatment. Counseling services were also available, but I didn't use them; my sister was very upset, and as a family member, she was able to have some sessions with the psychologist. I would find out about everything that is available at your treatment center and in your community--many things are free or very low cost---good to know, just in case.
I only work pt-time on weekends. I was ok for the first 3 1/2 weeks and then fatigue, loss of appetite and need to be near a bathroom caused me to take leave. My recovery(because of bowel issues and general fatigue and weakness, was longer. I don't think you can accurately predict everything; it sounds as if your emplyer is very reasonable and you will be able to take the time that you will need.
Unlike most people, I had 5FU in pill form(capecetabine/Xeloda) instead of an infusion via a fanny pack. Although I had very little appetite, I did not have nausea,vomiting or mouth sores...my hair thinned a bit and after treatment ended there was some shedding for a month or two, but I didn't lose alot of hair.
I was slightly constipated before treatment, had diarrhea during, and several months after treatmenet, and am now quite constipated and take Miralax (and sometimes coalace) every day. I always had a cast iron stomach and could eat everything and I am still able to eat everything.
"but I'm hopeful and try to remain positive, take it step-by-step." this is the absolute best approach...ask questions, ask for help and accept help
Best wishes for the holidays and the new year...we will all be here for you!
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Maggie
I had plenty of sick leave so I did not work at all during treatment. I went back to work part time about three weeks after treatment was over. Being on this site has showed me everyone is different- some people worked during most of treatment, others were more like me and took more time off. I agree with Tanda that you probably would not need a year off. Although it does take months to get your energy back fully.
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how long between diagnosis and treatment?
as soon as i was diagnosed (about 2 weeks ago), i've had all my ncessary apppointments and only have a couple more before i know the exact date of when my treatment starts (should be right after new years). so my diagnosis and start treatmetn date will be roughly one month. i know it's not too long of a time, but can anything spread or grow during this time?
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maggiesco
I'm not a scientist or an oncologist, but I suspect a few weeks between diagnosis and treatment will not make a difference. Most cancers have been growing for years before they make themselves known;an emergency might be something like spinal cord compressin, high fevers etc, inflammatory breast cancer, some leukemias,etc
I had what I considered to be an unconscionable delay between a positive biopsy (December) and the beginning of treatment(mid February) The cause of this delay was due to the difficulty of getting appropriate appointmnts with a treatment team(overbooked, out of the country temporarily,etc) treatment planing for proton radiation was very complex and a delay for that was ok
I was very upset about the delay, but was assured that this delay would not compromise treatment efficacy.
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My wife Melissa was diagnosed
My wife Melissa was diagnosed with 4.5 cm tumor on December 7, 2016. Didn't start treatment till 27 January 2017. It was definitely very hard waiting for the start of treatment, you want it gone NOW! But from everything we read and we were told, 1-2 months won't make much of a difference. Treatment was not fun, especially after week 3. But she is NED after about a year from diagnosis, eating like she used too. She also had the oral form of 5FU, called Xeloda.
Stay positive, and ask your nurses about any questions you have. They seemed to be very responsive, and more available than the doctors on short notice. This forum helped us a LOT, with knowledge of what was coming, tips for coping, etc.Melissa didn't want to read the forum, she was afraid there would be too much that would make her more worried. But it was wonderful for me to be able to understand things that could help her through, and things to watch for that might be worth following up with the medical team.
There are so many great folks here that have been through this. Don't hesitate to ask if you have a question, there is someone that has been on the same road, and will let you know how they handled just about any situation. As a resource, this forum was very inspiring to me.
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Tanda and Pat are right
It does seem like forever between diagnosis and treatment but it is unlikely to spread during that time. Maybe try to think of this as a time of preparation. Spend time with friends and family. I used my worry energy to host a big Thanksgiving meal for friends (2 turkeys!). I "pulled the cancer card" as my daughter put it and took the kids out of school for the day and took them early Christmas shopping and bought them everything on their list- when the going gets tough, the tough go shopping, right? Cancer does put things into perspective about what does and doesn't matter.
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maggiesco
Hi Maggiesco - I had Stage II in 2013, got through the 6 week treatment pretty well. I had been put in touch with 2 survivor buddies to help me through my treatment, wow, it helps SO much to hear from others who have been through it. It is almost unbelievable how many things doctors will never mention. And, to be fair, there were some big differences in our experiences (one buddy had terrible nausea, the other and I did not have any). Thankfully I was not working at the time which made it a lot easier. My opinion is that I could have probably managed to work through the treatment BUT ONLY a flexible WORK FROM HOME situation. That is key. Because you will want to be able to organize your day around your radiation and your body's bowel movements. Get a bunch of comfortable cotton knit dresses (I got a bunch of cheap ones from Target). Pooping, cleaning, drying the butt becomes a second job, lol, which is why it would have been impossible to go into a structured work environment. Plus, you don't want to expose yourself to germs. I had a PICC line instead of a port - it was wonderful on my last chemo day to have the PICC removed! Weirdest thing was "phantom poop pressure," I think caused by swelling. After pooping I was overwhelmed with sensation of having to move bowels, but nothing there. SO uncomfortable but it helped to understand that nothing was there and it went away in 10 min. Try to get a dental cleaning before you start treatment to maximize cleanliness and let your mouth heal before you need another cleaning. Get sensitive skin baby wipes and as your skin get irritated you need to learn to pat, never wipe. Understand that painkillers like oxy are great but constipating. I took ducolax tablets very carefully throughout treatment to keep bowel movements loose and easy to pass. But to avoid acid burn on skin, I would put on Desitan cream first. So yeah, cleaning up after that is no joke. Keep a pitcher in the bathroom for an improvised bidet. Again - pat do not wipe your skin! Don't eat raw fruits or veggies. Don't eat high fiber foods. I had to pay for magic mouthwash ($80!) and I would say it was worth it to help with the mouth tenderness. I remember the first week on chemo I did not experience ANY side effects and started to worry that somehow the product they gave me wasn't even real chemo (some kind of black market counterfeit drugs). What I didn't know was that the side effects don't kick in until the following week. Sorry for rambling I am just throwing out whatever I can think of. You can get through this and the success rate is very good!! Don't be embarrassed to ask ANYTHING on this site, there is no modesty in this journey, lol!
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