Another Newbie here -- tx questions

scmomof3

Hi, everyone -

I was dx with stage 1 squamous cell anal cancer last week.  I've appreciated having this discussion board for information so far.  I had stage 3 breast cancer 13 years ago, and I relied a great deal on a discussion board at that time, so I'm looking forward to giving and receiving information and support here as well.  I already have a lot of questions about tolerating the treatment.

After a bit of back and forth, I think that I will be recommended for the chemoradiation protocol.  I find out for sure on Friday morning.

I had radiation for breast cancer and began to blister by the 20th session.  Fortunately, I didn't have to do more than 25 rads that time.  I'm a bit concerned about radiating the anus.  Is the field narrowly focused on the anus, or does the burning extend much farther?  Why does it cause diarrhea -- because it extends into the body and hits the intestines?  Or is the checmo what causes the diarrhea?  (My first chemo caused terrible diarrhea.)

I run my own business from my home and hope to be able to continue to work at least some of the time.  Was anyone here able to work through?  I have the luxury of setting my own hours for the most part and I can try to set up my desk/computer in a comfortable way (if that is possible.)  Heck, what do you sit on???

Any info is appreciated.  I'm happy to refer to archives if anyone can suggest a thread.

SCMomOf3

Froggy32

Hi, sorry you had to come

but there is a lot of helpful people on here. I was diagnosed in April with mine. I had 6 weeks of radiation and chemo in a picc line. I started getting the burning and diarrhea around the 3rd week. I just finished my treatments last week. Still have a lot of diarrhea and burning of my skin. I use baby wipes instead of tp. And the dr gave me some lotion with lidocaine in it that helps some. And I have been using a foam neck pillow to sit on. It seems to help pretty good. I am retired so I can't help with the work question. I am sure someone can though. 

Mollymaude

Scmomof3

Welcome to the site. So sorry you have to be here. I think you will find the radiation and chemo to be a briefer but more intense treatment than for your breast cancer. You will probably be able to work from home the first couple of weeks but of course everyone is different. I didn't go to work the whole six weeks of treatment and for several weeks after. But I had the sick leave to use - if I didn't I might have pushed myself more. My oncologist let me decide how much work to take off-I was gone a couple of months from work. Others on this site have managed to keep working, and some of us get sicker during treatment than others.

As for radiation, they do the best they can to focus on only radiation to cancer tissue but there is collateral damage. Use keyword vaginal stenosis to read other threads on that topic. Bladder issues (radiation cystitis and urinary incontinence) can occur, they tell you to go to radiation with a full bladder - water in your bladder protects it, and it really does help. Radiation burns extend to the buttocks and external genitalia. The diarrhea is caused by both the chemo and the radiation. Many of us have been told radiation does not cause lasting diarrhea but the majority of us continue to have bowel issues we never had before.

Good luck with treatment and keep us posted. You've beaten stage 3 breast cancer so this anal cancer better take note- someone said recently about John McCain and his brain cancer: "Cancer doesn't know what it's up against".

mp327

Scmomof3

I'm so sorry you've had to seek out this support group, but I hope the information and support will help you get through this.  I was diagnosed with anal cancer back in 2008 and had 6 weeks of radiation and 2 rounds of chemo.  I had the typical side effects, including diarrhea.  For me, it was probably the worst side effect.  I took Imodium with minimal relief.  My bottom got very sore, given all of the trips to the bathroom combined with the burning that the radiation caused.  I suffered quite a bit.  However, YOU DO NOT NEED TO SUFFER like I did.  Get your aresenal ready.  Ask your doctors before you begin treatment for any prescriptions for meds that can help you with pain management, diarrhea and nausea.  There are also some OTC things you can get to help, such as Lidocaine containing ointments/creams, Aquaphor, Aloe, Imodium, etc.  As for anything you apply to your anal area for relief, just be sure to have no traces of it on your skin prior to getting a radiation treatment. 

I was not employed at the time of diagnosis, so I cannot speak to your question about the ability to work while undergoing treatment.  I do know that some people are able to, at least up until the last part of treatment.  Keep in mind that everyone's side effects are different in terms of severity.  Perhaps you'll be one of the lucky ones who has minimal side effects.

Keep us posted as to when you begin treatment and how you are doing.  I wish you all the very best.  I know you'll get through this!

scmomof3

Froggy32 said:

Hi, sorry you had to come

but there is a lot of helpful people on here. I was diagnosed in April with mine. I had 6 weeks of radiation and chemo in a picc line. I started getting the burning and diarrhea around the 3rd week. I just finished my treatments last week. Still have a lot of diarrhea and burning of my skin. I use baby wipes instead of tp. And the dr gave me some lotion with lidocaine in it that helps some. And I have been using a foam neck pillow to sit on. It seems to help pretty good. I am retired so I can't help with the work question. I am sure someone can though. 

Thanks, Froggy32!  I've got

Thanks, Froggy32!  I've got foam neck pillows and will make a mental note.  I wish I had a bidet and didn't have to wipe at all!  

scmomof3

Mollymaude said:

Scmomof3

Welcome to the site. So sorry you have to be here. I think you will find the radiation and chemo to be a briefer but more intense treatment than for your breast cancer. You will probably be able to work from home the first couple of weeks but of course everyone is different. I didn't go to work the whole six weeks of treatment and for several weeks after. But I had the sick leave to use - if I didn't I might have pushed myself more. My oncologist let me decide how much work to take off-I was gone a couple of months from work. Others on this site have managed to keep working, and some of us get sicker during treatment than others.

As for radiation, they do the best they can to focus on only radiation to cancer tissue but there is collateral damage. Use keyword vaginal stenosis to read other threads on that topic. Bladder issues (radiation cystitis and urinary incontinence) can occur, they tell you to go to radiation with a full bladder - water in your bladder protects it, and it really does help. Radiation burns extend to the buttocks and external genitalia. The diarrhea is caused by both the chemo and the radiation. Many of us have been told radiation does not cause lasting diarrhea but the majority of us continue to have bowel issues we never had before.

Good luck with treatment and keep us posted. You've beaten stage 3 breast cancer so this anal cancer better take note- someone said recently about John McCain and his brain cancer: "Cancer doesn't know what it's up against".

Thanks, MollyMaude --  I

Thanks, MollyMaude --  I already have IBS diarrhea, so I can't tell if this will just be more of the same, or will be worse.  It's already bad enough, but controlled mostly with medicines that absorb excess bile.  My breast cancer tx was quite intense.  They threw the kitchen sink at me -- Taxotere, Adrimycin and Cytoxan for 6 cycles, average recovery time is 10 days.  (Many BC patients only get Adri + Taxol/taxotere for 4 and then another set of just the Cytoxan.  Average recovery time is 4 days, I think.)  But at least I got a break in between.  Does the 5FU treatment give non-stop symptoms for the 60 days or so? 

scmomof3

mp327 said:

Scmomof3

I'm so sorry you've had to seek out this support group, but I hope the information and support will help you get through this.  I was diagnosed with anal cancer back in 2008 and had 6 weeks of radiation and 2 rounds of chemo.  I had the typical side effects, including diarrhea.  For me, it was probably the worst side effect.  I took Imodium with minimal relief.  My bottom got very sore, given all of the trips to the bathroom combined with the burning that the radiation caused.  I suffered quite a bit.  However, YOU DO NOT NEED TO SUFFER like I did.  Get your aresenal ready.  Ask your doctors before you begin treatment for any prescriptions for meds that can help you with pain management, diarrhea and nausea.  There are also some OTC things you can get to help, such as Lidocaine containing ointments/creams, Aquaphor, Aloe, Imodium, etc.  As for anything you apply to your anal area for relief, just be sure to have no traces of it on your skin prior to getting a radiation treatment. 

I was not employed at the time of diagnosis, so I cannot speak to your question about the ability to work while undergoing treatment.  I do know that some people are able to, at least up until the last part of treatment.  Keep in mind that everyone's side effects are different in terms of severity.  Perhaps you'll be one of the lucky ones who has minimal side effects.

Keep us posted as to when you begin treatment and how you are doing.  I wish you all the very best.  I know you'll get through this!

Dear MP327 -- Great tips.  I

Dear MP327 -- Great tips.  I will have my lidocaine ready!  Thank you for your advice.  I will definitely be on the boards daily.

Mollymaude

Scmomof3

I don't really think the 5FU causes side effects nonstop for 60 days but you kind of go thru the cycle of mouth sores, low blood counts etc. And all the while the radiation side effects are cumulative so it seems hard to tell what is making you sick after awhile. The second round of chemo is definately harder since you have had so much more radiation by the time you get second round. My immune system got so low at the end of treatment that I got sepsis from a urinary tract infection and was in the hospital my last week of treatment. Im assuming by your user name that you have three kids- are they really young or old enough to help out around the house? I wish I had asked my teenagers to step up a little more. I guess I ended up not even having the energy to ask for help if that makes sense. If you have time before treatment begins stock up on staples like laundry soap, paper products, and toilet articles. I got enough so that I didn't have to buy that stuff for a couple of months. You might become a toilet paper snob since cheap paper hurts more- my favorite is Charmin strong. 

LindaBaehr

So Sorry

Here is what I dealt with.  

I had 4 round of chemo because I had metastisis to the liver, so hopefully yours will not have this complication- it seems like they caught yours early.

I had essentially 4 weeks of radiation.  I took off work for a month- weeks 4-7 (meaning I took off the week after radiation).  I probably could have worked another week on the front end, but the diarrhea was killing me.  The last week and the week after were the worst- that's when the burns are the most severe and the skin starts sloughing off.

It burns from front to back- it almost hurt worse to pee than to poop.

I got a nice little fistula when the tumor shrank.  Hopefully yours isn't big enough to cause that yet.

I bought a donut to sit on (not the edible kind )

Prepare to spend a LOT of time in the bathtub.

Get some men's boxers or boxer briefs to wear.  I got the boxer briefs because I have to wear pads.

I still have persistent diarrhea and bad stomach pains a year out.  I also have pretty bad neuropathy in my feet.  But I didn't lose my hair!  lol

The consensus from my doctors is that the diarrhea and stomach pains are possibly going to be permanent.  The neuropathy is most likely permanent a year out.  It has most definitely negatively impacted my quality of life.  Immodium can help the diarrhea, but does nothing for my stomach pains.  Hopefully this will not be the case with you.  

 

I wish you the best.  

 

Wisteria83

LindaBaehr said:

So Sorry

Here is what I dealt with.  

I had 4 round of chemo because I had metastisis to the liver, so hopefully yours will not have this complication- it seems like they caught yours early.

I had essentially 4 weeks of radiation.  I took off work for a month- weeks 4-7 (meaning I took off the week after radiation).  I probably could have worked another week on the front end, but the diarrhea was killing me.  The last week and the week after were the worst- that's when the burns are the most severe and the skin starts sloughing off.

It burns from front to back- it almost hurt worse to pee than to poop.

I got a nice little fistula when the tumor shrank.  Hopefully yours isn't big enough to cause that yet.

I bought a donut to sit on (not the edible kind )

Prepare to spend a LOT of time in the bathtub.

Get some men's boxers or boxer briefs to wear.  I got the boxer briefs because I have to wear pads.

I still have persistent diarrhea and bad stomach pains a year out.  I also have pretty bad neuropathy in my feet.  But I didn't lose my hair!  lol

The consensus from my doctors is that the diarrhea and stomach pains are possibly going to be permanent.  The neuropathy is most likely permanent a year out.  It has most definitely negatively impacted my quality of life.  Immodium can help the diarrhea, but does nothing for my stomach pains.  Hopefully this will not be the case with you.  

 

I wish you the best.  

 

Linda

There is a med that my surgeon prescribed for me to alleviate abdominal pains. It's supposed to stop painful spasms I'm supposed to take it 4 times a day, and I always take the first one in the morning along with my other meds, but rarely remember to take the others.  When I next get up, I'll look for the name of it.  My abdominal pain isn't so bad most of the time.

Ok, here's what it's called:  http://www.medicinenet.com/dicyclomine-oral/article.htm

Bentyl is what it's called.  Read about it and if you think it might benefit you, ask your doctor about it.

tanda

scmomof3

.  Breast radiation really just impacts skin; it is not too bad because the breast is outside the body and not a major organ.  Your chemo cocktail was really formidable!

Radiation for a.c is really the main treatment; the chemo acts as a radiosensitizer to activate the radiation.. So everything in the lower pelvic area is being treated and the bladder, the bowel and the skin (from back to front) and the vaginia are in the field.

As for the chemo, I had the 5FU in pill form(capecitabine/xeloda), 5 days a week concurrent with the radiation, and mitomycinC on the first day.I  had frequncy and urgency, fatigue, no appetite.  I did NOT have nausea, vomiting, hair loss(altho some hair thinning) mouth sores or low blood counts.  In the last week I had hand and foot syndrome which was very painful; not everyone gets this...I know  breast cancer patients that are on xeloda for months and don't have hand and food syndrome

Not everyone experiences the same side effects to the same degree.  Treatment is about 5-6 weeks, I was ok for the firs 2 1/2-3 weeks.  I was anxious about the port and fanny pack and convinced my med onc to let me  have a pill.  My source for this was a study froma Memorial Sloan Kettering  that showed the pill was as effective as an infusion and LESS TOXIC

Capecitabine Plus Mitomycin in Patients Undergoing Definitive Chemoradiation for Anal Squamous Cell Carcinoma

http://www.redjournal.org/article/S0360-3016(14)00792-5/fulltext

5FU in pill form (capecitabine/Xeloda) is another approved protocol listed in the NCCN Guidelines.

scmomof3

Mollymaude said:

Scmomof3

I don't really think the 5FU causes side effects nonstop for 60 days but you kind of go thru the cycle of mouth sores, low blood counts etc. And all the while the radiation side effects are cumulative so it seems hard to tell what is making you sick after awhile. The second round of chemo is definately harder since you have had so much more radiation by the time you get second round. My immune system got so low at the end of treatment that I got sepsis from a urinary tract infection and was in the hospital my last week of treatment. Im assuming by your user name that you have three kids- are they really young or old enough to help out around the house? I wish I had asked my teenagers to step up a little more. I guess I ended up not even having the energy to ask for help if that makes sense. If you have time before treatment begins stock up on staples like laundry soap, paper products, and toilet articles. I got enough so that I didn't have to buy that stuff for a couple of months. You might become a toilet paper snob since cheap paper hurts more- my favorite is Charmin strong. 

Thanks again, MollyMaude --

Thanks again, MollyMaude -- the devil is in the complications, for sure!  And those are completely unknown until you lie down and let the treatment truck hit you.  Fortunately my children are much older -- only one still in the house!  Others are off at school.  I will have the help that I need, I think.  My biggest problem is what to do about my business, which I run from my home.  The docs are saying that I will hopefully be at about 75% for work . . . I'm hoping not to have to get rid of any clients, but what I CAN'T do is work at 100% and just pile this tx on top of that.  I'm still figuring it out.  

scmomof3

LindaBaehr said:

So Sorry

Here is what I dealt with.  

I had 4 round of chemo because I had metastisis to the liver, so hopefully yours will not have this complication- it seems like they caught yours early.

I had essentially 4 weeks of radiation.  I took off work for a month- weeks 4-7 (meaning I took off the week after radiation).  I probably could have worked another week on the front end, but the diarrhea was killing me.  The last week and the week after were the worst- that's when the burns are the most severe and the skin starts sloughing off.

It burns from front to back- it almost hurt worse to pee than to poop.

I got a nice little fistula when the tumor shrank.  Hopefully yours isn't big enough to cause that yet.

I bought a donut to sit on (not the edible kind )

Prepare to spend a LOT of time in the bathtub.

Get some men's boxers or boxer briefs to wear.  I got the boxer briefs because I have to wear pads.

I still have persistent diarrhea and bad stomach pains a year out.  I also have pretty bad neuropathy in my feet.  But I didn't lose my hair!  lol

The consensus from my doctors is that the diarrhea and stomach pains are possibly going to be permanent.  The neuropathy is most likely permanent a year out.  It has most definitely negatively impacted my quality of life.  Immodium can help the diarrhea, but does nothing for my stomach pains.  Hopefully this will not be the case with you.  

 

I wish you the best.  

 

Thanks for sharing your story

Thanks for sharing your story, Linda.  I have chronic stomach pains already with IBS diarrhea.  I use an anti-spasmodic called Hyocyamine. For my neuropathy related to my first cancer tx, I take a vitamin B12 supplement.  I think it has been moderately helpful.

scmomof3

tanda said:

scmomof3

.  Breast radiation really just impacts skin; it is not too bad because the breast is outside the body and not a major organ.  Your chemo cocktail was really formidable!

Radiation for a.c is really the main treatment; the chemo acts as a radiosensitizer to activate the radiation.. So everything in the lower pelvic area is being treated and the bladder, the bowel and the skin (from back to front) and the vaginia are in the field.

As for the chemo, I had the 5FU in pill form(capecitabine/xeloda), 5 days a week concurrent with the radiation, and mitomycinC on the first day.I  had frequncy and urgency, fatigue, no appetite.  I did NOT have nausea, vomiting, hair loss(altho some hair thinning) mouth sores or low blood counts.  In the last week I had hand and foot syndrome which was very painful; not everyone gets this...I know  breast cancer patients that are on xeloda for months and don't have hand and food syndrome

Not everyone experiences the same side effects to the same degree.  Treatment is about 5-6 weeks, I was ok for the firs 2 1/2-3 weeks.  I was anxious about the port and fanny pack and convinced my med onc to let me  have a pill.  My source for this was a study froma Memorial Sloan Kettering  that showed the pill was as effective as an infusion and LESS TOXIC

Capecitabine Plus Mitomycin in Patients Undergoing Definitive Chemoradiation for Anal Squamous Cell Carcinoma

http://www.redjournal.org/article/S0360-3016(14)00792-5/fulltext

5FU in pill form (capecitabine/Xeloda) is another approved protocol listed in the NCCN Guidelines.

Thank you also, Tanda -- I am

Thank you also, Tanda -- I am going to ask about the pill.  I only have one arm for tx (my left is lymphedema due to no lymph nodes after first cancer), and they are planning to put in a PICC line on Friday.  It will be a challenge even to get the blood draws that are going to be necessary for this period of time.  

jajmom

January 2017 Diagnosis

Hi, I am glad to see you have founds this forum. Just sorry you needed to You asked about the radiation field and I wanted you to know that it varies greatly and takes into consideration any lymph node involvement. I had both local and non-local lymph node involvement so my field of treatment ranged from very intense radiation in the tumor area to less intense throughout my pelvic area. They took as best precautions as able to avoid my bladder and hip areas. I had a bad cardiac side effect from the 5FU which I was receiving via a pump.(You may have a medi-port surgically inserted as I have found this to be a fairly common thing now days).  The 5FU was stopped on day 4 of a 5 day treatment. Mitomycin was handled quite well. I did not receive a second round of 5FU due to the complications I experienced.

I handled the treatment quite well in the beginning. My first side effects were vaginal drainage and anal/vulvar itching as the tissue began to break down. I was able to work up unitl about week 4 fairly comfortably...WARNING: things can go downhill pretty quickly at the end of treatment! Your skin has finally said "I've had enough"! Thankfully treatment is soon over. Domeboro soaks and Triple Paste diaper ointment may be your best friends! They forget to tell you this at the clinic so I will tell you... do not treat with lotions or creams, esp zinc, prior to treatment. This may intensify the damaging effect of the radiation. I survived non-hodgkins lymphoma many years ago so this too was not my first round with cancer as with you. The chemo surprised me having only 2 rounds with the anal cancer. My treatment before included cytoxin, vincristine and methotrexate 2x week for nearly a year! The radiation tho was the tough part in the anal cancer treatment.

I am happy to say my first CT scan since treatment came back with no sign of cancer. I wiil see a surgeon for my follow up exams every 3 months for 2 years and less frequently after that if all stays well. I wish you the best on this journey.

xxsarahxx

donut pillows ftw

I generally agree with most of what everyone has said.  My two cents is that I was definitely not able to work through treatment (I had a relatively low-key desk job at the time), although everyone is different. Between the sickness from the chemo and the terrible localized effects from the radiation, it was all I could do to lay on the couch and make it to the end of the day.  At the end, I couldn't even sit.  I definitely spent a lot of time in the bathtub, as someone else mentioned.  For me, it was just all very tough.  And recovery and tapering from the pain meds were slow and difficult as well.  I wasn't able to return to work for some time; I was in and out a lot.   I only say that to tell you that if you find it hard and can't do your normal things, you're not alone.

As far as what to sit on, here you go: https://smile.amazon.com/Aeris-Memory-Foam-Donut-Cushion/dp/B00U7BOOTU/ref=sr_1_46?ie=UTF8&qid=1501546163&sr=8-46&keywords=donut+cushion

I bought two.  One for work and one for home.  I used them for probably a solid year after treatment.

Best of luck.  You can totally get through this.

Wisteria83

scmomof3 said:

Thank you also, Tanda -- I am

Thank you also, Tanda -- I am going to ask about the pill.  I only have one arm for tx (my left is lymphedema due to no lymph nodes after first cancer), and they are planning to put in a PICC line on Friday.  It will be a challenge even to get the blood draws that are going to be necessary for this period of time.  

Xeloda

I used Xeloda and it was easier than what the folks with a picc line go through.  I had lots of nausea and no appetite, but I didn't need to be hooked up to anything...just a couple of pills twice a day...only on radiation days.

If I had it to do over again, I would choose the pills again.

jajmom

xxsarahxx said:

donut pillows ftw

I generally agree with most of what everyone has said.  My two cents is that I was definitely not able to work through treatment (I had a relatively low-key desk job at the time), although everyone is different. Between the sickness from the chemo and the terrible localized effects from the radiation, it was all I could do to lay on the couch and make it to the end of the day.  At the end, I couldn't even sit.  I definitely spent a lot of time in the bathtub, as someone else mentioned.  For me, it was just all very tough.  And recovery and tapering from the pain meds were slow and difficult as well.  I wasn't able to return to work for some time; I was in and out a lot.   I only say that to tell you that if you find it hard and can't do your normal things, you're not alone.

As far as what to sit on, here you go: https://smile.amazon.com/Aeris-Memory-Foam-Donut-Cushion/dp/B00U7BOOTU/ref=sr_1_46?ie=UTF8&qid=1501546163&sr=8-46&keywords=donut+cushion

I bought two.  One for work and one for home.  I used them for probably a solid year after treatment.

Best of luck.  You can totally get through this.

Donut pillow woes

My friend ordered a donut pillow and had it shipped to me hoping it would enable me to sit comfortably. Unfortunately it arrived at the worst of my discomfort. I could not use it at that time, only a towel or small blanket rolled up and placed beneath my knees on my desk chair provided enough relief to allow me to sit for a short period of time. This lifted my fanny off the seat and the weight was on the underside of my knees. After some healing took place I was able to use the donut to sit at the table or on a hard chair. It didn't really ever work on my office chair. Every bottom is different so definitely try any and all possibilities to get through this extremely uncomfortable time.

I have a question to any who would like to chime in. I am 2 months past treatment. How long before the skin on my bottom heals properly? The area around my anus, my inner labia/vagina and the crack of my behind is extremly fragile and tends to damage easily. The skin also peels almost daily. I wish I had a bidet because TP and even baby wipes are not my friend!!!

Thanks,

Chris

xxsarahxx

jajmom said:

Donut pillow woes

My friend ordered a donut pillow and had it shipped to me hoping it would enable me to sit comfortably. Unfortunately it arrived at the worst of my discomfort. I could not use it at that time, only a towel or small blanket rolled up and placed beneath my knees on my desk chair provided enough relief to allow me to sit for a short period of time. This lifted my fanny off the seat and the weight was on the underside of my knees. After some healing took place I was able to use the donut to sit at the table or on a hard chair. It didn't really ever work on my office chair. Every bottom is different so definitely try any and all possibilities to get through this extremely uncomfortable time.

I have a question to any who would like to chime in. I am 2 months past treatment. How long before the skin on my bottom heals properly? The area around my anus, my inner labia/vagina and the crack of my behind is extremly fragile and tends to damage easily. The skin also peels almost daily. I wish I had a bidet because TP and even baby wipes are not my friend!!!

Thanks,

Chris

Recovery varies widely because everyone responds differently to treatment.  I am roughly 1.5 years from treatment and the skin in my perianal area is still fragile and is easily damaged.  That said, it is much, much better than it was two months from treatment.  Two months out, I was still a disaster.  The skin around the anal area is notoriously bad at healing (poor blood perfusion, I believe) and full of nerves, which is one reason why anal cancer treatment is so brutal.

I was just speaking with the oncologist about this topic and he really just reiterated what I have heard from so many others; some people have no problems, so people have terrible problems and most people end up landing somewhere in between.  In biology most everything can be described with some sort of a bell curve, if you know what that is, and I speculate skin fragility after radiation is no exception.

I tried to minimize use of tp for a long time and often, well i call it "spraying off!" in the shower with a removable shower head after bowel movements.  The closest thing I could get to a bidet.  I used a bidet bottle (can get them on amazon) sometimes, but the shower is much easier.  I could pretty much get in and out with only the pertinent area and maybe one leg wet, so that's what I did at home.  I also used and continue to use charmin because it was most gentle and tried a variety of baby wipes before settling on seventh generation as they worked best for me.  I think some may have alcohol in them, so it may be worth checking as you don't want anything drying or with ingredients that are irritating.  Lastly, I made a little kit that I still carry in my bag with me everywhere to this day.  I have a roll of tp, wipes, disposable gloves and lanolin that I use if I have to use a public restroom.  The tp in them is the worst and very irritating, so I bring my own now.  Of course I feel crazy having to do this, but it really helps a great deal, so whatever!  Also, since I mentioned lanolin, I found that helps me with the integrity of the skin, but there are other options as well.

Unfortunately, you really do have to just keep moving forward and it sucks.  But the good news is that it really should improve with time.

scmomof3

jajmom said:

January 2017 Diagnosis

Hi, I am glad to see you have founds this forum. Just sorry you needed to You asked about the radiation field and I wanted you to know that it varies greatly and takes into consideration any lymph node involvement. I had both local and non-local lymph node involvement so my field of treatment ranged from very intense radiation in the tumor area to less intense throughout my pelvic area. They took as best precautions as able to avoid my bladder and hip areas. I had a bad cardiac side effect from the 5FU which I was receiving via a pump.(You may have a medi-port surgically inserted as I have found this to be a fairly common thing now days).  The 5FU was stopped on day 4 of a 5 day treatment. Mitomycin was handled quite well. I did not receive a second round of 5FU due to the complications I experienced.

I handled the treatment quite well in the beginning. My first side effects were vaginal drainage and anal/vulvar itching as the tissue began to break down. I was able to work up unitl about week 4 fairly comfortably...WARNING: things can go downhill pretty quickly at the end of treatment! Your skin has finally said "I've had enough"! Thankfully treatment is soon over. Domeboro soaks and Triple Paste diaper ointment may be your best friends! They forget to tell you this at the clinic so I will tell you... do not treat with lotions or creams, esp zinc, prior to treatment. This may intensify the damaging effect of the radiation. I survived non-hodgkins lymphoma many years ago so this too was not my first round with cancer as with you. The chemo surprised me having only 2 rounds with the anal cancer. My treatment before included cytoxin, vincristine and methotrexate 2x week for nearly a year! The radiation tho was the tough part in the anal cancer treatment.

I am happy to say my first CT scan since treatment came back with no sign of cancer. I wiil see a surgeon for my follow up exams every 3 months for 2 years and less frequently after that if all stays well. I wish you the best on this journey.

So helpful! Thank you for

So helpful! Thank you for this.  The vaginal discharge started right away -- I was wondering what was going on.  They also had to stop my 5FU a day early due to burning sensation in the skin, slightly swollen lips, etc.

scmomof3

xxsarahxx said:

Recovery varies widely because everyone responds differently to treatment.  I am roughly 1.5 years from treatment and the skin in my perianal area is still fragile and is easily damaged.  That said, it is much, much better than it was two months from treatment.  Two months out, I was still a disaster.  The skin around the anal area is notoriously bad at healing (poor blood perfusion, I believe) and full of nerves, which is one reason why anal cancer treatment is so brutal.

I was just speaking with the oncologist about this topic and he really just reiterated what I have heard from so many others; some people have no problems, so people have terrible problems and most people end up landing somewhere in between.  In biology most everything can be described with some sort of a bell curve, if you know what that is, and I speculate skin fragility after radiation is no exception.

I tried to minimize use of tp for a long time and often, well i call it "spraying off!" in the shower with a removable shower head after bowel movements.  The closest thing I could get to a bidet.  I used a bidet bottle (can get them on amazon) sometimes, but the shower is much easier.  I could pretty much get in and out with only the pertinent area and maybe one leg wet, so that's what I did at home.  I also used and continue to use charmin because it was most gentle and tried a variety of baby wipes before settling on seventh generation as they worked best for me.  I think some may have alcohol in them, so it may be worth checking as you don't want anything drying or with ingredients that are irritating.  Lastly, I made a little kit that I still carry in my bag with me everywhere to this day.  I have a roll of tp, wipes, disposable gloves and lanolin that I use if I have to use a public restroom.  The tp in them is the worst and very irritating, so I bring my own now.  Of course I feel crazy having to do this, but it really helps a great deal, so whatever!  Also, since I mentioned lanolin, I found that helps me with the integrity of the skin, but there are other options as well.

Unfortunately, you really do have to just keep moving forward and it sucks.  But the good news is that it really should improve with time.

Thanks everyone -- I just

Thanks everyone -- I just wanted to add that you can buy bidet seats that install on your regular toilet.  I've just ordered mine tonight.