CSN Login
Members Online: 9

Got diagnosed with anal cancer caused by HPV

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

I had a wart that had fissured removed two weeks ago and my doctor said it was cancer. He thinks some cancer might be in the anal canal. He said its treatable with chemo and radiation. I have an appt on Tuesday with the radiation doctor, a catscan and an oncologist. I am 48 yrs old and very scared. Can anyone tell me if they have had this and ...i dont even know what I am asking. I clearly am not strong and for a guy am acting like a baby. Just really scared.

z's picture
z
Posts: 1267
Joined: May 2009

Hello and welcome, sorry you had to find us. You are not a baby, and have every right to be scared. I also had hpv in the 2-3 cm anal tumor. I had the standard chemo/radiation treatment that has a 80% cure rate. Notice I said cure. The 1st thing the general surgeon told me was this is a curable cancer. I was staged T2NOMO and completed treatment on 6-30-09 and I am doing great, as a matter a fact I just had a follow up dre (digital rectal exam) with the professor at the teaching hospital, and he said I was stone cold normal and there is no scar tissue. You will be fine and I know its all overwhelming, we have all felt that. Please ask anything you want, and remember to breath. Keep us posted. Lori

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

Lori thank you so much. My sister is coming on Tuesday to take me to my appts and i am grateful for that. I am so glad you are OK and thank you again for making me feel better today. I have been having such a hard time sleeping and the three words that keep going through my head are cancer, radiation and chemo. Your message is definitely comforting to me, thank you!!!

z's picture
z
Posts: 1267
Joined: May 2009

I am so glad you'll have your sister, it really helps to have someone there with you at the appointments to listen to the dr also, as I know initially its overwhelming and hard to hear everything thats said. Once you get started you will see that you can do this and the treatment only last a little over a month. We are fortunate that it is such a short treatment time, but aggressive enough to cure us. Keep us posted and I'm sure more survivors will be chiming in to welcome you and answer any questions you have. Lori

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

You have no idea how good it feels to read your comments, thank you so much. I uploaded a picture of me and my Boston Terrier but it doesnt seem to be in the same area like yours is..how do i put the picture with my name so people can see who i am when i post like yours does? Thanks.

z's picture
z
Posts: 1267
Joined: May 2009

Chris, If you go to your profile and hit edit, it will have picture, click on that, and then I think you browse to find your picture and then download it. I hope that works. I want to see you and your pet. I love dogs, I now have cats, all my dogs have passed from old age. My cats sleep about 18 hours a day and I'm gone a lot, so that works out well. The dog in my picture is a friend of mines. He looks like hes smiling and it makes me laugh. I hope that you can get your picture in there. Lori

mxperry220
Posts: 368
Joined: Mar 2011

Your reaction is normal. I too am a male who was diagnosed with anal cancer in November 2008. I found all the testing leading up to the treatments was the most stressful for me. I did not sleep much during the testing peiod which lasted about one week. Once the tratments stareted I slept much better due to the diminished stress of the unknown. I received the standard radiation and chemo treatments for anal cancer. I had 30 rounds of radiation treatments and 2 weeks of chemo. The chemo used was mytomycin and 5FU. The 5FU was a pump pack inserted to a port implanted in my chest for ease of administering both chemos. The pump pack was worn 24/7 for 4 days. The mytomycin was administered via the port in the chemo center. Even though the port is a surgical procedure it was no big deal. My chemo doctor told me if I had to have cancer this is one of the "best" to have because it responds well to the treatments and they have more success curing this type cancer versus other type of cancers. If I remember correctly the port was taken out 8 weeks after my final treatments.

I drank Ensure during treatments to make certain I had all the vitamins I needed. My radiation burns were minimal. I ate toast and ice cream during treatments. My diet was rather bland due to diaherrea issues. I did not have any blisters like the doctors described. The doctors said I had extra healthy skin. Hopefully this will be you case.
Mine was more like a sunburn without blisters. This was not only on my buttocks but also in the groin area. I used Aquaphor ointment to apply to the radiation burns. I tried several other ointments but this seemed the best for me. Also I tried several pain meds but found Advil worked the best for me.

After treatments I bought thin sanitary pads and put in my underwear because of seepage. This lasted for about 6 weeks. Diaherrea was an issue for several weeks during/after treatments. I took Immodium which helped me. Sam's sells the gereric which is much cheaper than Immodium brand. I wore briefs rather than boxers during this period bacause the sanitary pad stayed in place better with briefs.

I have more bowel movements post treatment. My normal BMs prior to treatment was 2 daily. I now have 3-4 BMs daily. I take 3 immodiums daily. The doctors said this was O.K. and would not cause any problems. I started eating Activia daily within the last week and this had helped.

After treatments you will probably be seeing your chemo/radiologist every 90 days for the first 1 1/2-2 years. I am almost 3 years post diagnosis and see my doctors every six months.

I found talking with the patients in the oncology area was a big help for me mentally. I realized many of them were much worse than me. Hope some of this helps and puts your mind a little more at ease. Remember to keep a positive mindset during this time.

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

thank you so much for sharing your experience with me... i am trying to be positive and just keep getting upset..i wish Tuesday would get here soon... thank you so much i am glad i signed on to this site today...wonderful people helping out strangers... pretty great

Ann_i_
Posts: 47
Joined: Oct 2011

mxperry220 seems to have great advice!! (Being female myself, I found most of what he said to be my experience as well.)

I wish I had known about the cream early on in my radiation treatments, instead of only after they saw the skin reaction and asked me how the skin was feeling.(I just figured it was normal and dealt with it the best I could.) The cream is a godsend, ask for it early and use it as directed. Not before treatments but after. I would go back to the dressing room after treatment and apply it immediately.)

I can't really think of what to add to mxperry's advice (aside from the above.)

But I'd like to add my philosophy for life. And it got me through this and continues to see me through this.

I worry over what I can change and how to change it. What I already know I can't change, I honestly 'do my best' not to worry over. (That doesn't mean I don't worry, I just try really hard to remember that I will change what I can, and I will do my best to deal with what I can't change.)

Can I change test results that haven't happened yet? No (Will worrying about said test results change said test results? No) What I waited for was the diagnosis that would get me on the path to recovery and that would end my pain. (I needed a goal, once I had the goal, I aimed for it and I'm still going down the goal path to get to my end goal.)

I'm a worriwart by nature. This has been hard for me to grasp and apply in my life. But I keep trying to make it my mantra. Change what I can, and do my best to set, meet, and exceeds goals of what I can't change. (I also have a negative outlook and always look to the worst case scenario that could happen, oddly, this has helped me, because most of what's happened to me, well, it could have been worse from my perspective, so I can deal with what I've got.)

On a side note: Someone here mentioned 'breathe'

My daughter came home from school one day with this written on her wrist. I asked her why? (She's 15 and a sophomore in high school.) She said a friend caught her while stressed out and told her to breathe, then wrote it on her wrist to remind her throughout the day.

Later, another friend saw it, grabbed her hand, flipped it over and said, "Why?"

My daughter: "It's good advice."
Her friend: "No, it isn't!"
My daughter: "No, then YOU stop!"

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

thank you so very much...i am a worrier too and so stressed right now...i just want tuesday to come so they can tell me about the catscan and how much cancer there is and what has to be done etc...thank you for helping me by writing on here..it means a lot

mxperry220
Posts: 368
Joined: Mar 2011

Make certain to have no ointment on you where they radiate. The doctors cautioned me on that. It is fine to apply the ointment after radiation but not before. I did not question why but think it might cause the radiation to burn your skin tissue easier if the ointment is on during the radiation treatment.

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

This is the hardest time. You are in the acceptance stage and beginning to learn to trust in your caregivers, once you have determined you are in the right hands. That's what someone told me on this board and it was true. The emotional side of the diagnosis and getting to know new doctors was very hard for me. Having the right treatment center is important. I will pray that you have all the right care givers on your healing journey and angels along the way too. Please don't be afraid to talk about this with friends. It's not your fault you have this cancer. It is good to have the support of your community. All the information you need has been provided here about the treatments. This is a great site. It has helped me immensely and I recommend you keep posting throughout your journey as often as you can. My doctors gave me morphine before treatment ever started and told me to take it throughout and I did and needed it. So don't worry about what you take for pain meds. Take the pain meds the doctors give you. I ate a lot of ice cream too and still lost weight. I like my size. All my old clothes fit again!
All the best,
Sandy

mxperry220
Posts: 368
Joined: Mar 2011

Chris,
I found a lot of emotional relief by lookig at my daily radiation as a job rather than a treatment. Even though I am retired (61 years old-"old man"---HAHAHA) I looked at this as my job each day during treatment. For me this was a little comfort rather than dreading my daily treatment.

BTW prognosis so far so good. The doctors have found no signs of cancer so far. I am scheduled for a colonoscopy in November(3 years after diagnosis). I had another coloscopy 1 year after diagnosis. I always get nervous before appointments or tests not knowing what the results may be. I think this is a norm as I have read comments from many others on this site that have this same anxiety before tests and appointments. My doctors say once I reach the three year mark post diagnosis the chance of recurrance is greatly reduced.

Also, ask your doctors what stage your cancer is. Then have them explain what that stage means. You can go to the American Cancer website and they also have this information. Stage 1 and 2 means the cancer has not spread and is localized in the area of the tumor only (not in lymph nodes or other organs).

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

Don't tell me to go to "my" doctor.....to answer this question - I am into wk3 of radiation/chemo for anal cancer. Never engaged in any lifestyle choices which are associated with this type of cancer....how can I find out if I have HPV while in the midst of treatment?

Phoebesnow
Posts: 451
Joined: Apr 2011

Hi

Sorry about your diagnosis.  I think they can diagnosis by blood test.

mp327's picture
mp327
Posts: 3077
Joined: Jan 2010

Your situation is the same as mine was.  After almost 4 1/2 years, I still do not know inconclusively that my cancer was HPV-mediated.  However, odds are that it was, even though my lifestyle did not put me at risk for the virus.  It's my understanding that the only way that this can be determined is to have the tumor tissue that was biopsied tested for HPV.  Mine was not. 

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

thanks for reply

have since found out that yes, positive for HPV16. Now wracking my brains for the past 40 years of how I could have gotten the virus......lol.....40 years!  have 2 more weeks of radiation and staring second round of 5FU fanny pack next week.....then wait for repeat CAT scan in May, etc. etc. etc. I have allegedly t3-n0-m0, i.e. Stage 2-3....so am at risk for colostomy....

how many of you out there faced a decision as to what to do next after initial chemoradiation did not do away with entire tumor?

mp327's picture
mp327
Posts: 3077
Joined: Jan 2010

I'm sorry you have had to find yourself here due to your diagnosis, but you'll get lots of support here from others who have already been where you're about to go. Like Lori said, anal cancer has a high cure rate and while the treatment is certainly no fun, it is short-term and very doable. I know you have lots of questions right now and very few answers, so I would suggest that you visit the website for the National Comprehensive Cancer Network (NCCN.org) and register. Then you'll be able to view the latest guidelines for treatment of this cancer. If you can print out a couple copies that would be great, as you may want to refer to them often. Also, take a copy to your doctor so that you and he/she both understand what the treatment protocol is. Also, the HPV and Anal Cancer Foundation has a great website with lots of good info.

As you get more information regarding your upcoming treatment, start date, etc., please let us know. We will be here with you every step of the way to support you, answer questions, and listen. You are not alone in this! I understand the scared part and that's normal. Try to stay positive and everything will be okay!

Phoebesnow
Posts: 451
Joined: Apr 2011

Sorry you have to be here. Theresa Mayhew wrote a book about anal cancer that I found to be really helpful. Sounds like u have received some good advise from mx Perry. Maybe it is a little easier on men as u have thicker skin. Find out everything u can about anal cancer before Tuesday when u meet with the docs, I would also get a second opinion from an outside cancer center. Knowledge is everything now. Goog luck to you.

Carrol

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

thanks very much for the information on the book

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

i cant believe how nice you and everyone else is to take the time for me...thank you so much

Angela_K
Posts: 374
Joined: Jan 2011

Being overwhelmed and frightened is so normal. I was in shock I think for days after the initial diagnosis. I contacted a couple of trusted, level headed close friends in the medical field who researched this cancer and treatment protocol for me and fed me information at first because there was SO much our there, good info and bad info (on the internet) I didn't want to go into information overload. My brain and my spirit just couldn't handle it all at first. This helped me TREMENDOUSLY.

Chris, know that you WILL get through this. Know that you WILL be okay. Staying positive is half the battle.

We're here for you when you need us.

Many blessings, Angela

shirlann54
Posts: 161
Joined: Aug 2011

I understand how you feel.I was scared too and i did act like a baby. I could'nt sleep.All i could think about was the word cancer.But when i started my treatments i don't feel as scared.You will start sleeping better .you will find out you are stronger then you think.I,m 57 I got done with my treatments in Jan 2011.I had the chemo and radiation .After your radiation treatments put your cream on that will makes it feel better.But dont have any on when you go in for your radiation treatments your Dr will tell you that.I got like a sun burn.I didn't get a real bad burn.I have a dog too she stayed by my side she know i was sick. When i would lay down she was as close to me has she could get.We just love her.You will get a lot of support here.We will be here for you. shirley

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

i cant sleep either...my sister is coming tomorrow from Marblehead, MA and staying overnight then going with me to my appts... even after everything all you nice people have said i am still so scared...i am clearly not a strong person...thank you so much for your kind words and your wonderful support!

Ann_i_
Posts: 47
Joined: Oct 2011

That's what has you in its clutches.

It's always scarey until you get the facts. Right now you aren't sure of anything, and you don't have control. (We all get scared in the face of that.)

Once you are armed with information and facts, then you will tackle what needs tackling and take each day as it comes, and when you get to the other side(finish treatments), you'll realize you did it with strength.

You'll be scared of Radiation until you have your first treatment, and see what it's like. (My favorite radiation technicians were a male and female team, they had my sense of humor and nothing was taboo. When the male radiation technician took pictures of my pelvic region once about three quarters of the way through treatments, we had an interesting short conversation:

Me: Are those for personal or professional use?
Him: These ones are for professional use.
Me: Oh, So you'll let me know when you take the ones for your personal use then?!
(The female technician couldn't help laughing: "She's got your number!")

You'll be scared of your first chemo treatment, until you go and have it. (Chemo is a bit harder, in my opinion, because it takes a lot out of you, but you CAN do this.) My chemo nurse was awesome. Friendly, helpful, talkative, got me through it.

You'll be surprised at what you can handle and face and get through. (And don't stress yourself if you find it overwhelming and emotional as you and your sister talk to the doctors on Tuesday. It's a lot to take in at once. Just think about in advance some of the questions you will have and write them down and give them to your sister. This way, if you get emotional or feel like you can't talk without feeling overwhelmed, she can take over and get your questions answered for you.)

Angela_K
Posts: 374
Joined: Jan 2011

Ann_i_ is so right. Writing down your questions, having your sister there for another set of ears, and writing down the answers and other info that you get is so helpful. At first everything is such a whirlwind of emotion and activity, it's hard to remember to breath, much less what a provider says or doesn't say.

mp327's picture
mp327
Posts: 3077
Joined: Jan 2010

Have your sister take the list of questions and right down the answers from the doc. It is so overwhelming that you may not remember everything that is said.

Another good thing to do is request copies of all tests--bloodwork, scans, etc. Make a file so that you have these results, should you ever need to go elsewhere for treatment, a 2nd. opinion, etc.

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

sooo sorry you have to be here but everyone has given you great advice so i will just throw in that i am 2 years 3 months post treatment and i still am a baby concerning my anal area. i treat it with great care. every time i have an appt or digital rectal exam, i am scared. so you are normal . you will be fine. i am female and there are a few issues that i have to deal with but i think males do better. hugs to you sephie

7243
Posts: 223
Joined: Feb 2011

Chris ... I hear you about the fear. I was really knocked of my feet by my diagnosis and still struggle, but I'm better than ever ... one day at a time. This isn't something you ever thought would happen in your life! You look like a happy, healthy guy ... and underneath of it you still are! But this is a "rock your world" diagnosis. Hang in there ... allow yourself to be right where you are. Surround yourself with those you love and let them be there for you ... they want to be! I hope you're near to a cancer center that sees anal cancer frequently. This is a rare cancer ... only about 5000 are diagnosed each year, although the number is rising. It's important to get care from physicians who see and treat this rare cancer on a regular basis (maybe you mentioned where you're getting treatment, but I didn't see that and you don't have to tell us any specific information about your location or where you're getting care). So be sure to ask how often the oncologists see this cancer, what are their success rates with treatment, etc. It is essential your radiation oncologist is talented and experienced with Intensity-Modulated Radiation Therapy (IMRT). This is a great radiation therapy technique where the dose of radiation is specifically targeted to the tumor and other areas and is "healthy tissue sparing", however (like anything) the more a physician develops treatment plans for anal cancer, the better they are ... ask about the radiation therapy technique they use at your cancer center and how many treatment plans the radiation oncologist has planned. Ask for a PET scan ... PET CT if you can get it, and ask them to explain your stage (size of the tumor, etc.). The NCCN guidelines are a great resource ... be sure to go to that site and print the anal cancer guideline, read it, and take it to your appointments. All of the care outlined in that guideline is developed through clinical trials and is evidence-based. Combined chemo-radiation (Nigro Protocol) is the standard of care for anal cancer. Also, if no one has mentioned this, the Rare Cancer Alliance is a great place for support as well. Many folks are registered there too. I can't stress more the importance of being seen and treated by physicians/cancer treatment teams who deal with anal cancer often (not rectal cancer, anal cancer). A few of those centers are: MD Anderson in Houston, UCLA Cancer Center in LA, Sloan Kettering in New York, Moffitt Cancer Center in Tampa, Dana Farber/Brigham and Women's in the Boston area, UCSF Diller Cancer Center,San Francisco, The University of Pennsylvania Abramson Cancer Center and Fox Chase Cancer Center in Philadelphia, Roswell Park Cancer Center in Rochester NY, Northwestern University in Chicago, Johns Hopkins in Baltimore, University of Washington, Seattle, Duke University Cancer Center (Great Radiation Oncologists and Oncologists) to name a few. I probably missed a few ... Look at the physicians who helped develop the NCCN guideline ... you'll see many of the facilities I listed there.

Most importantly, once you find a great team of physicians who you trust, relax and let them take good care of you ... your job is to go to treatment, love yourself, let yourself be where you are, be afraid when you are, find a good support group through your cancer center and go, feed yourself well, pray or meditate or whatever you do to nurture your spirit, get daily exercise regardless of how little you can tolerate, and drink lots of fluids ... and heal. Have fun too ... keep up your social life as much as you can.

I was diagnosed one year ago Oct 29th ... it's a hard road, but you will get through it. A big warm hug to you ... I hear your fear, I know your fear and I know you can get to the other side. Take good care ... we're here for you every step of the way.

xoxoxo ... thanks for being courageous enough to tell us your story. You are not alone.

7243
Posts: 223
Joined: Feb 2011

Chris ... I highly recommend Ambien for sleep and perhaps something for anxiety. I got prescriptions for these after I hadn't slept for what felt like weeks. I was so anxious and stressed out. The way my psychologist explained it to me is these medications are a tool you need now to help you through this tough time. Once things settle down a bit you can taper off ... I don't take anything now, yet I took Ambien every night and Zanax every day for a time. Getting sleep is so important. Consider getting into an 8 week mindfulness based stress reduction class ... I'm not sure where you are, but UMass is known for their work in this ... it is meditation and I wish I started it when I was initially diagnosed. It changed my life for the better in so many ways. See if your cancer center has a Center for Life, or Center for Integrated Living ... they may offer this type of class. Get a list of cancer support groups and see if one is close to your home.

Oh, when they biopsied my tumor, It was positive for HPV too. 80 percent of all squamous cell anal cancers are HPV positive. Same virus that causes cervical cancer in women and is a cause of many throat cancers too.

Hang in there ... keep us informed. xoxo

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

today was overwhelming...i was so scared but thankfully my sister was with me and she took notes and asked questions while i was completely useless... so the radiation doc went over my scan and said it looks like stage 1 (or 2) and is treated by six weeks of radiation, five days a week along with chemo.. i live in Provincetown, MA on the tip of Cape Cod alone or with my Boston Terrier but i have no vehicle and it would have been impossible for me to get rides five days a week for six weeks to Hyannis where Cape Cod Hospital is... an hour drive each way...so i am going to be treated at Mass General North in Danvers, MA and stay at my sister and her husbands house... so not sure if Mass General North is on that list 7243 but hope so..hoping its a good place to get treatment... i know i will be ok and i am so glad i have all of you to talk to at any time! been a long day so going to take a shower and go to bed... thanks again to all of you strangers who are now my friends!

mxperry220
Posts: 368
Joined: Mar 2011

This means your cancer has not spread and is localized in the original tumor. The doctors have much success treating Stage 1 and 2 anal cancer. You will be fine. There will be some discomfort from the radiation but always think of the long term goal--Cured of Cancer!!!! Make certain to keep your immune system up. As I stated previously Ensure worked for me. You are receiving the standard treatments for anal cancer patients. Also I ate canned Chicken Noodle soup which did not upset my digestive system as well as white bread toast. You might want to stay away from any fiber product/fruit for now. You might try Activia also. I just started eating this and it has helped my BM habits. I have been eating this for 2 weeks. I wish I had started wating this sooner. I am now having 2-3 BMs daily rather than 3-4 which was a post treatment norm for me two weeks ago. I do not know if this is just temporary or permanent but as of today my colon activity has slowed down.

Try to keep your life as stress free as possible particularly during treatments. Get plenty of rest. I mainly stayed in bed or in my recliner during the treatment phase.

Hope this helps some-- Hang in there--You will be fine.

Keep us posted as to your progress. We have all been through this and can help you during this time.
Mike

pjs62
Posts: 95
Joined: Sep 2011

Although I'm still fairly new to this board I must say that everyone has been so helpful & very supportive. This 'cancer' that we've all dealt with is very rare so its a good feeling to know you're not alone.
I was diagnosed July 2010. Didn't think to seek a 2nd opinion & should've asked alot more questions. My drs just said they needed to start treatment immediately. I did 2 - 90 hrs of chemo along with 28 radiation treatments. This is the 'norm'. It wasn't too bad. More side effects from radiation not chemo. You do learn as you go.
I'm not sure how many other 'discussions' on this board you've read. Long story short, my cancer is recurrent (I'd been sick so drs did biopsies). They said only option is APR (major surgery with perm ostomy). I couldn't 'wrap my brain' around this! So after research & lots of questions we found a new cancer center. I have a great caring medical team. In about 2 weeks I go for surgery & brachytherapy.
So in the meantime, I'm trying to do all I can to prepare. A few things maybe you can try: digestive aids such as probiotics, enzymes, fennel seed, ginger tea. Health food stores has many of these. Also yogurt (I'm hooked on smoothies!), jello, anything mild & light.
I'll keep you in my prayers as you begin your journey. Just take it step by step. And its great to have your sister near to help when needed. (& of course your pup!!)

azgal
Posts: 31
Joined: Oct 2011

Hi Chris,

Being diagnosed is world shaking. Feeling overwhelmed and having fears is so normal. The 1 or 2 stage is optimal for a complete cure which is great news. Treatment can be rough but it is short compared to other cancer treatments. As others have mentioned there are specific things you can do to help yourself through it.

Your stage is typically a good canditate for IMRT radiation which, at a certain point, involves a more focused radiation field and results in far less damage to other surrounding organs and arteries, etc., when compared to the standard alternative radiation. It's something to seriously consider and to discuss with your oncs and the top experts in the field.

I would suggest always getting a second and/or third opinion, and if your treating docs are not top experts in anal cancer to please have your docs consult with the leading experts.

In addition to the other great advice offered here I would also suggest searching out helps on the net that have been of great help to others. These things listed are things that helped me, learned from trial and error but mostly learned from beloved experienced-others on a yahoo group with many members with anal-cancer that helped me select and survive treatment, and then some...

1) Insist on DPD deficiency testing before starting treatment. Approx 1% of patients lack the enzyme needed to process 5FU. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563423/

2) agree to HIV testing since very critical treatment approach will depend on the results (we can opt not to know the results of the test if we choose)

3) make sure the penis and scrotum is out of the radiation field during radiation treatments

4) have 5% lidocaine on hand to numb radiation sores if you're not allergic to lidocaine. Applying this to the anal and surrounding area for sores every few hours and before BM's will greatly reduce pain. Be aware that most docs will NOT be familiar with 5%, only the 2%, but just insist they Rx 5% and they will.

5) for radiation mouth sore relief beyond what Gel-Clair can numb/handle, and what you might need at a moment's notice, what worked great for me was the script below, written exactly as below, and kept refrigerated (your docs will write it for you exactly as below as you tell them to even though they've probably never heard of it), the beloved radiation mouth-sore relief coined "Miracle Mouth Wash" by others from a yahoo anal-cancer group, can be filled at any local compounding pharmacy (even any compounding walgreens can do this):

Per 180 ML:
45 ML Lidocaine Viscous
45 ML Nystatin Susp
45 ML Diphenhydramine Elixir
45 ML Maylox Plus

6) wear very baggy boxers, if any at all, to allow the best air flow to the rad area and blow dry on cool/warm after bathing and before applying ointments (as others have said, always wash off ointments completely before rad treatment, and if the area has burns/open sores then gentle cleansing and very warm sitz baths 3-5 times a day for a minimum of 20 minutes each brings much relief.

7) disposible bed pads help with keeping resting/sleeping areas sanitary if that becomes an issue

8) Biotene mouth wash and Q-tips for cleansing the teeth/mouth if or when mouth/gums become too sore to brush

9) applying 5% lidocaine before BM's when there's irritation and applying a stream of water during BM's to help reduce acidic discomfort that can occur

10) pepcid ac along with script anti nausea meds helped control stomach upset from the other various meds

11) wiping (gently dabbing, actually) with large cotton balls saturated with water was better tolerable, and when wiping was not possible sitz bath cleansing was substituted

12) Dilauded (hydromorphone) for pain worked best for me since it did not cause stomach upset like some other pain meds had, and there's off script meds that can help with sleep and nausea while also helping with anxiety

13) having both mild anti-D and also mild stool softners on hand is recommended, especially stool softners taken 2-3x daily as directed by docs depending on the individual while taking pain meds (which can cause constipation later on in treatment) if constipation becomes an issue. Having non acidic soft and liquid foods on hand can help if digestive system sores become an issue.

14) after radiation began most foods tasted very odd, or metalic, or way too salty to consider eating, so I kept an open mind for foods that would not usually appeal to me...and I gave up eating with metal silverware because I could not tolerate the feel of it.

15) in a tiny pack I eventually carried a few disposible bed pad liners along with the ones I sat on in car rides, extra change of shorts, zip lock baggies, travel size non alcohol wipes, large cotton balls, bathroom tissues/paper towels, non stick gauze pads, a surgi bottle to fill for a cleansing water source, extra lidocaine and OTC oinment, 1-2 day's supply of all meds, and crackers or other harmless snacks to nibble as needed along with an ample supply of water. Drinking lots of water (6-8 glasses per day) helps flush the body. Moisturizing lip balm can come in handy for dry lips. As always, first ok everything with your docs.

There's so much info to help during treatment and after, and I've listed only the things I recall offhand that helped me get through it. I had a little 3 or 4 shelf unit with all supplies on it in the bathroom that made it easy for me access without help.

Wishing you all the best, Chris.

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

My “sherpa” (a friend who had the same cancer and the same treatment) recommended something called ELAM Cream, which is 2.5% lidocaine and 2.5% prilocaine. It's very effective for the anal discomfort caused by radiation. It can also be applied to the chemo port about an hour or two before it is accessed, and you won't feel a thing.

7243
Posts: 223
Joined: Feb 2011

Sounds like you got good news Chris ... and how wonderful that you can be with your sister. Mass General is a great facility and I will think positive thoughts that you'll be fine in the long run ... it may be tough in between though!!

Blog members provided great input ... I also recommend a sitz bath kit for when you're dealing with BMs during treatment. I used the bag filled with warm water after every bowel movement .... soothing and it kept me clean. I also soaked in the tub with Aveno Oatmeal soak.

I found Biotene mouth rinse great when I had mouth ulcers.

Senocot S (gentle laxative and stool softner combination) was helpful for me when I was on narcotics when things got rough during radiation.

Domeboro's solution helped sooth my burns between cheeks and perineal burns. Ask your radiation oncologist about what he or she recommends and like their patient's to use.

Although this sounds awful ... you'll make it and we'll all be right here with you. Lots of love and support ... take good care!

RoseC's picture
RoseC
Posts: 510
Joined: Jun 2011

Just wanted to say hi and welcome to the group. The folks are just great here and provide SO much information and comfort. Glad you're at an early stage. I was stage 2 and am now three years out and doing well. I'm from the Boston area and was treated at Lahey Clinic in Burlington - they were great. Mass General North will probably be great too (I looked up their site and they seem to have all the state-of-art-equipment and much experience). Best of luck to you! You'll be ok!

7243
Posts: 223
Joined: Feb 2011

Hey Chris ... I love that photo of you and your dog! What is his/her name??

Okay ... There are some wonderful personal stories shared on the rare cancer alliance site ... and I recall men speaking frankly about male genitalia issues related to radiation i.e., erection issues and such. We women on the site speak very frankly about how the radiation impacts our sex life, how our vagina really took a hit in most instances ... but for a guy, your issues will be different yet as traumatic. Google Rare Cancer Alliance ... you'll find it Chris ... hope it's helpful.

Take care and I hope you're sleeping better! xoxo

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

Thanks 7243 his name is Johnny. I met my two new doctors today at Mass General North who are Dr Schwartz and Dr Soto. They went over things with me but after it was all over I still seem to be so scared. I also feel like i am feeling sorry for myself or depressed and i know i should be positive about everything. I go in on Tuesday for the PET and then Wed to start the planning i think he said where they will put three permanant dots on me. I asked if i would start radiation/chemo the following monday and they said they werent sure and that it usually takes a week from pet/planning to start. So much to take in for me anyway. I also noticed that as a gay man talking online to other gay guys about having anal cancer creates silence. Crickets if you will. I say I am HIV Negative as of last week but apparently saying I have anal cancer makes them not want to talk to me anymore. My sister and her husband are going to come down Sunday and pick me up here in Provincetown and bring me back to Marblehead and I will start staying with them until treatments are over. Sorry to sound like such a baby on here because you guys are all so brave. Have a good night everybody and thanks again for all your help.

mp327's picture
mp327
Posts: 3077
Joined: Jan 2010

I'm sorry that you are finding that some people are not supporting you in this fight. What I would say to them is that this disease can happen to anyone--no one is exempt.

I understand being scared--I was so very frightened! But this cancer has a very good treatment outcome in a high percentage of cases--much better than some other cancers. I'm not saying any of us is lucky to get this cancer, but it should be encouraging to know that there are many survivors who are living quite normal lives. I hope you can begin treatment soon, as I found the waiting prior to chemo/rad to be a rough time. Once you start treatment, you will feel like you are doing something to fight the disease. Think of it as your job for 6 weeks. Put your all into it, keep a positive attitude, and let others help you get through this. I'm glad your sister and her husband will be there for you. Let them be a part of your team--it will help you and make them feel like they are doing their part. Please keep us posted.

Phoebesnow
Posts: 451
Joined: Apr 2011

I so understand that u r scared. I threw up all night before first tx. It almost had to be canceled. But I went and I am glad I did. Chemo is not like the old days, take your nausea meeds and u will be fine. Have your ammonium and gas x, and aquaphor a plenty. Get ultra soft toilet paper and your squirt bottle and your sitzbath and painkillers beforehand. Dont forget the mouthwash. Cuddle up with johnny and u will be ok. Chemo is really not bad, radiation u will not feel anything for three weeks at least. The second chemo is even less than the first. Get a calendar and cross off the days.

Take this time to enjoy your favorite foods, family pets and hobbies, then u will have good times to look back upon while u r going thru tx. Before u know it, tx will be over and u will begin to enjoy these things again. Remember to thank your sister and brother in law for there support often. It will be a tough time for everyone emotionally. Sometime I think it is harder on the care giver.

People are pretty stunned when u say u have cancer. It certainly does shut people up when u say anal cancer. People don't know what to say, I think they automatically think Farrah and she died. People do not know enough about this cancer. I usually do not tell people when they ask.. My common response is cancer is usually not found in a pretty place, or in your little toe. really I wonder why peoples first response is where? Like it matters other than for them to judge u. Maybe that's why breast cancer is so popular, it's pretty and u can't blame anyone for getting it.

Anyway it is up to you what you want to tell people and when.

I am happy we can be here for you.

Carrol

Dog Girl
Posts: 100
Joined: Sep 2010

Chris,

To echo so many others, hate that you found us, but I think this site will be helpful. I wish this had been up and going when I went thru tx in 09.

I just want to mention one thing that I haven't seen anyone else mention in your thread. I'll be the first to admit I'm not good at physiology (? - I'm not even sure if that is the right word and I know I probably didn't spell it right, but you'll soon learn to not sweat the small stuff). I don't know how females' ovaries and uteruses impact the organs positioning, but I was told to make sure to go into rad treatments with a full bladder. Evidently a full bladder would lift out of the radiation field somewhat and there would be less chance of residual damage from the zaps. Ask your Dr. about that and about anything else you are questioning. And come back here too; I'm amazed at what some people were not told (including myself), so sharing is knowledge and knowledge is ammunition in this fight against cancer. There are so many survivors here that will cheer you and all the others on. And just think; when you are cured and healthy, you can pay it forward to someone else in the future.

mp327's picture
mp327
Posts: 3077
Joined: Jan 2010

Like Dog Girl, I was advised by my rad onc to always have a full bladder for radiation treatments, as this helps to keep the bladder out of the field of radiation. This will prevent undue damage to the bladder.

Along those same lines, my advice to you today is to stay hydrated! Drink plenty of water, as dehydration is what puts some people into the hospital. My rule of thumb was to drink 8 oz. of water after each trip to the bathroom. I had lots of diarrhea, which dehydrates, so it was important to keep up with the fluids.

Also, on the first day of treatment, begin rinsing with water and baking soda or salt. Frequent rinsing will help keep mouth sores from forming, which are very unpleasant and make eating very difficult.

You will get through this. Just tell us what you need from us--we're here for you!

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Hi Chris, I too am sorry that you had to fine this site. I was sitting in your shoes back on June the 7th of this year. I thought I had a hemmoride but it was not. My tumor was 2-6 mm in my sphincter muscle so any type of operation would have left me with a colostomy bag. The good news was that the cancer I had, Squamous cell carcinoma" which is good old skin cancer is very curable. They treat anal cancer the same way they treat colon cancer. I also had the two rounds of 96 hours of chemo and 33 radiation treatments. I just had my follow up and the cancer is gone. I did as much research as possible before I saw my rad dr so I could ask questions. Some people told me that I was learning too much. I have to admit that some of it scared me but I felt that the more I knew the better off I was to handle a situation if it happen to me. We all pretty much have the same results from the chemo and radiation but in different degrees.

The first chemo was not bad at all. They gave me meds that would help with upset stomach. The radiation treatments do not hurt at all. Please make sure that they put you on a machine that can go all the way around you. If they do not have the machine, I think it is called a gamma knife, go fine a doctor that has one. Think of a pie and cut it into 12 slices vs a vertical/horizonal machine that you can only cut into 4ths with your tumor sitting in the middle of the pie. It does less damage to your good cells and organs. Since you are a man you will not have to deal with the issue of a vagina, so that is good. The most important thing is to listen to your body. Rest as much as possible and eat when you can and as much as you can. Also drink as much liquid as you can.

This is the bottom line: We have or had cancer. We can't make it go away so we deal with it head on. Make sure you like your doctors. Let your family and friends help you. Please remember that if God brings you to it then he will see you through it.
There is a lot more that I could tell you but with all the angels on this site you will have enough to read and learn. God bless you! Cindy

Chris Ptown's picture
Chris Ptown
Posts: 102
Joined: Oct 2011

you ALL are so amazing! i never thought perfect strangers could be so warm, friendly, loving and supportive... thanks to each of you that has responded to me I am so grateful..so i go to Mass General North tomorrow (Friday) to meet my new oncologist Dr Schwartz and my new radiation doc Dr Soto. I am anxious to start my treatments and get this all done with. I am so thankful I have you guys to chat with during and after! You guys all rock! XXOO

Midwinter
Posts: 1
Joined: Apr 2013

  Can I ask how you are now? Thanks for sharing..!

StruTanToot
Posts: 108
Joined: Aug 2012

Hi Chris...I had the same diagnosis as you and would really like to chat with you sometime to see how you're doing and see if you have any advice.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network