My Anal Cancer Experience

McG
McG Member Posts: 14 Member
edited January 23 in Anal Cancer #1

Hello fellow anal cancer patients!

When I was first diagnosed I visited this forum many times. Although I never posted anything, I gained much knowledge and felt a great deal of support. Now I want to relate my experience with the hope that someone else who is facing the same thing will benefit as I did.

(As a point of reference I'm male, and was 66 years old and in otherwise excellent health at time of diagnosis.)

Diagnosis:

In October 2016 I discovered a lump in my right groin area. Originally diagnosed by my primary care doctor as a hernia I was referred to a hernia specialist. He ordered a CT scan that came back negative for hernia but positive for a swollen lymph node that needed to be biopsied. In early December 2016 the biopsy result was squamous cell cancer and I was referred to an oncologist.

Since squamous cell in a lymph node meant the cancer came from somewhere else we went looking for the source. A colonoscopy and head to toe PET/CT scan both revealed no other suspicious areas. The oncologist said since we couldn't find a cancer source to treat  we needed to remove the lymph nodes in the groin area and referred me to a surgeon. Fortunately for me the surgeon felt lymph node removal surgery should wait until I was examined by the colorectal doctor in his office. An anoscopy showed nothing but during a thorough physical anal exam he felt a tiny lump and decided to do a biopsy. That was it! Asymptomatic invasive anal cancer had spread to an inguinal lymph node. The final diagnosis was stage 3 anal cancer and a treatment plan was formulated.

Treatment:

Treatment consisted of 30 radiation treatments (called fractions) over six weeks with chemotherapy during the first and last weeks.

For the chemo part I had a port-a-cath implanted under the skin, just below my right collarbone, that tapped into an artery. A small tube from a portable chemo pump was attached to the port. The pump was the size of a small purse and every 30 seconds, for 96 hours, it would run for a few seconds and administer a small amount of Mitomycin C and 5-Fluorouracil (5-FU). Additionally at the start of each of the two chemo infusion weeks I went to the chemo clinic and was hooked up to a chemo IV for about an hour. The rest of the time I just wore the pump as an outpatient.

For the radiation  treatments I went to the radiation oncology department of my local hospital five days a week, Monday through Friday. (My hospital uses a Tomotherapy machine so I can only relate this particular type of therapy but I imagine other radiation machines are similar.) I would arrive at the center and change into a hospital gown. Then lay on the machine table which looks similar to a CT machine (actually it is part CT) The treatment took approximately five minutes but you have to remain completely still so the radiation beam hits where it's supposed to.

Chemo side effects:

Both chemo and radiation started the same day. First I went to the chemo clinic. I was placed in a very comfortable reclining chair, an IV was placed in my arm and an infusion of chemo meds begun. Almost immediately I noticed a chemical taste in my mouth and smell in my nose. Not extremely overpowering or but certainly not very pleasant. The infusion lasted about an hour. When it was done  the chemo pump tube was attached to the port-a-cath in my chest and turned on. The 96 hour (4 day) infusion kept the chemical taste and smell constant. This is one of the things that takes your appetite away. It makes some things taste like cardboard and some things taste downright terrible. Some foods were ok. Banana splits tasted normal. Cold pizza of all things tasted good but hot pizza didn't. You will have to experiment.

Along with food issues the chemo would often make me feel queasy. The doctor gave me a prescription for anti-nausea pills but the last thing I wanted was more chemicals in my system. Fortunately I live in California so I had access to medical marijuana. I would STRONGLY recommend using it if at all possible. Cannabis is amazing at suppressing nausea. At the same time it stimulates appetite. For whatever reason the intoxicating effects were nil. It's great medicine. I got a small pen type vaporizer and kept it with me. Many times I woke during the night (the incessant vibrating of the pump would often wake me) feeling sick. I would reach for the vape pen on the nightstand and do two or three tokes. There was almost immediate relief from feeling sick and I could go back to sleep.

After the first week of chemo the pump was removed. The nausea stopped almost immediately. It took about three weeks for my taste and smell to return to normal. I enjoyed that for a couple of weeks until the second round during the last week of treatment, which was an exact repeat of the first round. I found the second round easier simply from knowing what to expect and which foods to eat. My weight loss wasn't bad at all. I went from 185 pounds to 175 over the course of treatment. The doctors were very happy I only lost 10 pounds. I credit appetite stimulation from cannabis with keeping weight loss to a minimum.

Another thing that helped was L-glutamine. The chemicals used to treat anal cancer have a side effect of causing mouth and esophageal sores which make eating difficult. L-glutamine is the most prevalent enzyme in our body. Chemo reduces the enzyme level in soft tissue which leads to sores. Replacing the enzyme stops sores from developing. I bought a large jar of unflavored L-glutamine powder at a health food store. It's not expensive. The dosage was two tablespoons in six ounces of apple juice three times daily. Take a mouth full and swish it around for a minute or two, then swallow. Continue until the juice is gone.  It is important to start using the powder the first day of chemo. Waiting until sores appear is too late and the powder will only slightly reduce the symptoms. I used it meticulously during the entire treatment period, not just the chemo weeks, and only developed one very small mouth sore that went away in a couple of days. 

As far as hair loss goes I have a full head of hair and experienced only minor hair thinning. Maybe 10/15%, barely noticeable.

Radiation side effects:

While the side effects from chemo happen almost immediately, radiation side effects take a week or two to start and increase over time. For me the main side effect of radiation was fatigue. I started noticing it after about a week. During the weeks between chemo treatments, when there was no pump making it difficult to sleep, I was sleeping ten hours at night and still would fall asleep for an hour or so a couple of times during the day. In spite of the fatigue I was able to drive myself to the hospital every day (although it was only 20 minutes each way).

Another side effect I had was what the doctor called skin breakdown. Since the cancer had spread to lymph nodes in my groin the focus of radiation was in that area. During the course of treatment my entire lower abdominal and groin area looked and felt sunburned. There are water based topical ointments that help (I used Aquaphor. Ask your radio medical team what they recommend. Also be sure to clean off all ointment prior to each treatment or the burning will be worse.) Even though the ointment helped keep the skin moisturized, after five weeks of treatments my skin started cracking and getting very sore. The doctor had me take a week long break from radiation. I didn't like the fact that I was delaying the end of treatment but it was necessary. Over the course of the week my skin healed enough that the final week didn't cause any problems. It took a couple of months for the skin to completely heal after completing treatment.

A side effect that is common in cases of radiation in the abdominal area is gastrointestinal distress, or the poops! The L-glutamine I used to help with chemo side effects works wonders for this problem too. Many times I felt abdominal cramping start but it would quickly subside after ingesting the L-glutamine.

The final side effect is one that may have been unique to my particular condition. I had been a severe hemorrhoid sufferer for 30 years. I mean BAD. Surgery had been ruled out and I just had to live with it. Every few years an extremely painful anal fissure would open, usually after a bout of constipation or diarrhea, and would take a week or more to heal.

My doctor told me that a common side effect of radiation treatments is diarrhea, and if that happened to cut back in fiber in my diet (I had been on a high fiber diet to keep regular and help with the hemorrhoid problem). I was so afraid if getting the poops that I went overboard and on day one of treatment I eliminated most all fiber from my diet. That caused immediate constipation and a hemorrhoid flare up along with a small fissure. I immediately went back to fiber in the diet but it was too late, for the remainder of treatment I often had very painful bowel movements. That was really the worst part of the whole thing. If not for the sore butt I feel I would have skated through everything with the help of cannabis and L-glutamine.

Now, since the diagnosis was anal cancer, radiation was also being done to my anus. Even without my fissure issue I'm sure bowel movements would have been quite unpleasant as the skin around the anus also became "sunburned". Oh, there was also anal leakage. For several hours after a morning movement I would need to clean up with wet wipes every 30 minutes. It was pretty gross but subsided quickly once treatments were over.

One positive side effect to the radiation for me was eliminating the hemorrhoids. Odd but once the anal area healed from the fissure and reddened skin they were gone.

Recovery from side effects:

Chemo side effects go away quickly. The chemical taste and smell as well as nausea stopped within a couple of days after the last chemo treatment. By three weeks later my taste and appetite had returned to normal. The hair thinning stopped immediately but it took about a year for the lost hair to grow back.

Radiation side effects take longer to subside. The skin in the area treated took a couple of months to stop being sensitive, although there was no pain during that time. The fatigue took much longer to go away. Three months before I began to feel somewhat normal. At six months I was about 75%. It took around a year before I felt completely normal.

Today:

I am now 16 months post treatment. Three PET/CT scans, physical exams and quarterly blood tests have come back normal. My oncologist has reduced my scan frequency from six months to a year. I know since I was stage three and the cancer got in the lymph system there is a good possibility it will return at some point. But for now I feel great and all side effects are completely gone.

I know this has been a rather long post but I wanted to be as detailed as possible. I truly hope someone will benefit and their journey through diagnosis, treatment and recovery will be somewhat easier.

Grant

«13456

Comments

  • annie4145
    annie4145 Member Posts: 218 Member
    Thank you for the good

    Thank you for the good overview of your experience.  I start on the 20th of August and can't wait to get through it.

     

  • mp327
    mp327 Member Posts: 4,440 Member
    Grant

    Thank you for sharing your experience and providing some good information in hopes of helping someone else.  Keep in mind that there are many stage 3 survivors out there who are doing well several years after treatment.  I hope that will also be the case for you.  I wish you all the very best!

  • McG
    McG Member Posts: 14 Member
    edited August 2018 #4
    annie4145 said:

    Thank you for the good

    Thank you for the good overview of your experience.  I start on the 20th of August and can't wait to get through it.

     

    You are most welcome Annie!

    You are most welcome Annie! One thing to keep in mind, when you're on the front side of things it all looks so daunting. But time passes and before you know it it will all be behind you.

    Sending positive thoughts your way!

  • McG
    McG Member Posts: 14 Member
    mp327 said:

    Grant

    Thank you for sharing your experience and providing some good information in hopes of helping someone else.  Keep in mind that there are many stage 3 survivors out there who are doing well several years after treatment.  I hope that will also be the case for you.  I wish you all the very best!

    Thanks for your kind words.

    Thanks for your kind words. One thing my doctor told me was to not look at historical survival rates. Those averages include data from 20+ years ago. Today's treatments are so much better than in years past. Honestly I've never been worried or had feelings of doom. If I get a recurance sometime I'll just take care of it and keep going. Positive thinking with a good attitude are the only way to be.

  • Jane s
    Jane s Member Posts: 77 Member
    I was stage 3

    I was stage 3b and I do not think my cancer will come back.  I envision my doctor telling me I'm cured and can go and rejoin the human race.  He actually did tell me last week he highly doubts it will come back.  I'm counting on it.

    Positive attitude is the way to go, for sure!

  • Ottawamarc1234
    Ottawamarc1234 Member Posts: 148 Member
    Jane s said:

    I was stage 3

    I was stage 3b and I do not think my cancer will come back.  I envision my doctor telling me I'm cured and can go and rejoin the human race.  He actually did tell me last week he highly doubts it will come back.  I'm counting on it.

    Positive attitude is the way to go, for sure!

    Thanks..Hoping I will get better sooner rhan later..

    Post 41 Days MRI not scheduled until late September..always wondering whats going on down there with still mild pain and a 'new fissure'..hopefully they got rid of my hemmies too!. 57 not 20...i guess a 'slooooow healer'...Thanks For Your Post! 

    A Canuck in Ottawa Canada

  • Ohmy
    Ohmy Member Posts: 102 Member
    Welcome to the club!  I was

    Welcome to the club!  I was also Stage 3 and i am 17 months post treatment.  I also hemorrhoids.  I find they don't flare up if i drink Metamucil every day and I take Miralax a few times a week.  I feel good and I try to enjoy every day.  My next PET scan is in October. 

  • Janina15
    Janina15 Member Posts: 2 Member
    Hi and thank you so much for

    Hi and thank you so much for posting your story. My mom is just about to start here treatment in 2-3 weeks and we’re all terrified.

    thank you for all details!!! God Bless You!

  • mp327
    mp327 Member Posts: 4,440 Member
    edited March 2019 #10
    Janina15

    I am very sorry that your mother has to go through this treatment.  However, it is very doable.  I am a 10 1/2 year survivor of stage 2 anal cancer.  There are many other survivors on this site too.  I hope knowing that gives you and your mom hope that her treatment will be successful.  I wish your mom all the very best.

  • Janina15
    Janina15 Member Posts: 2 Member
    annie4145 said:

    Thank you for the good

    Thank you for the good overview of your experience.  I start on the 20th of August and can't wait to get through it.

     

    Hi, hope you’re doing well.

    Hi, hope you’re doing well. Can you tell me about your experience and side effects? I start next week

  • annie4145
    annie4145 Member Posts: 218 Member
    Janina15 said:

    Hi, hope you’re doing well.

    Hi, hope you’re doing well. Can you tell me about your experience and side effects? I start next week

    It will be over sooner than

    It will be over sooner than you think.  The first couple weeks, I did not have any real troubles.  Take your anti-nausea medicine on time.  The one problem that I with chemotherapy is when I decided I didn't need to take the anti-nausea medicine and could "just sleep it off" instead.   My main difficulties came towards the end, with pretty bad diarrhea.  I don't suggest buying a whole bunch of medicine or over the counter stuff to counter side effects until after you start.  My hospital provided me with all sorts of things that would have cost alot at the pharmacy, and they definitely had preferences about what type of creams they wanted me to use.  I was also very tired and weak, and was not able to work during, but some people are able to.  (I live about 2 hours from the hospital, and only commuted the first week.  Subsequent weeks, I stayed at a hotel closer to the hospital).  After treatment, I took 2 weeks off work, and then I started back part-time for 2 weeks, and then returned full-time. It took me about a month or two to get back into my full schedule. I learned subsequently after treatment that I was low thyroid, and since have been taking 75 mg. of medicine for that every day, so perhaps that was part of my tiredness.   Just use this forum as you feel able, and there is alot of suggestions that people can give you.  Good luck on your treatment!  What part of the country are you located?

  • Justin Vincible
    Justin Vincible Member Posts: 1
    edited November 2020 #13
    Thank You

    I was just diagnosed with squamous cell anal cancer stage 3 two weeks ago.

    I get my port put in tomorrow. I'm not new to chemo I've had Hodgkin's Lymphoma twice since 2010. I'm thankful for your post and more than ready to beat this thing again. I was just nervous about the radiation and seeking answers. Thanks again.

  • pializ
    pializ Member Posts: 508 Member
    edited November 2020 #14
    Justin Vincible

    Hi! 
    Sorry that you are having to deal with this, but compared to many cancer treatments it is of relative short duration. It's not a walk in the park, but doable! My treatment was almost 8 years ago for stage 3, so whilst my information on the technical issues of treatment may be outdated, I can offer some basic self care advice! 
    Firstly, eat a low fibre diet. Stay ahead of the pain relief. I used to ask for what I would be needing next in advance. From OTC strength cocodamol to prescribed strength cocodamol. I was also prescribed oromorph but never actually needed it. Stay on top of nausea. Wear loose clothing. I found that sitting on a sheepskin helped. My portable bidet became my best friend! After showering, use a hairdryer on a low heat to dry the area. 
    If you have any other questions, feel free!

    Best wishes for an uneventful journey through this treatment

    Liz

  • mg042721
    mg042721 Member Posts: 7
    edited June 2021 #15
    Thank You

    It is so reassuring to hear all of the stories of people who are many years post treatment and doing well. I just started treatment today and hope I can be a success story one day too! 

  • annie4145
    annie4145 Member Posts: 218 Member
    edited June 2021 #16
    mg042721 said:

    Thank You

    It is so reassuring to hear all of the stories of people who are many years post treatment and doing well. I just started treatment today and hope I can be a success story one day too! 

    Hi MG.  At the very beginning

    Hi MG.  At the very beginning of the six weeks, it seemed like an endless period of time stretching out in front of me.  But it will go by pretty quickly, and then you will be done, and recovering.  I am going on three years now since my treatment.  Stage 3a when diagnosed.    

  • dcboy
    dcboy Member Posts: 4 Member
    edited July 2021 #17
    my anal cancer experience

    Thanks for your detailed posting.   I was diagnosed yesterday, will have the PET scan tomorrow and see the oncologist and radiation people next week.   It's really scary stuff but reading posts like yours helps me understand the world I am entering and some practical tips to helpl me get through it.   Right now the mental stress is the worst as you can imagine, but finding this site and posts like yours is helping already. 

  • annie4145
    annie4145 Member Posts: 218 Member
    edited July 2021 #18
    dcboy said:

    my anal cancer experience

    Thanks for your detailed posting.   I was diagnosed yesterday, will have the PET scan tomorrow and see the oncologist and radiation people next week.   It's really scary stuff but reading posts like yours helps me understand the world I am entering and some practical tips to helpl me get through it.   Right now the mental stress is the worst as you can imagine, but finding this site and posts like yours is helping already. 

    Welcome DC.  Good luck with

    Welcome DC.  Good luck with your PET scan!  Please let us know if you have any questions. The first couple of weeks, I was a real basket case! The worst part was trying to figure out where to get treatment (since I am in the Bay area, I had the choice of two hospitals), what treatment was the best, etc. etc. But once you have a plan of attack, the path forward gets simplier, and you can just focus on the day to day until the treatment is over.   Best wishes, 

     

  • Ddorson
    Ddorson Member Posts: 4
    edited July 2021 #19
    Your treatment was very

    Your treatment was very similar to mine, except I have chemo at the beginning and the end, with radiation in between.  FInished about 3 weeks ago and still trying to get back to something that resembles "normal" as far as fatigue.   I have lost almost 20 pounds as I have not been able to resume a "normal" diet, or still don't have an appetite.  SOOO tired all the time and now have pain in my hips that I did not have before this started, which may be from the radiation

  • dcboy
    dcboy Member Posts: 4 Member
    annie4145 said:

    Welcome DC.  Good luck with

    Welcome DC.  Good luck with your PET scan!  Please let us know if you have any questions. The first couple of weeks, I was a real basket case! The worst part was trying to figure out where to get treatment (since I am in the Bay area, I had the choice of two hospitals), what treatment was the best, etc. etc. But once you have a plan of attack, the path forward gets simplier, and you can just focus on the day to day until the treatment is over.   Best wishes, 

     

    Treatment starts in a week

    Thanks Annie4145.  Since my post I have had the PET Scan - Stage 2a - an MRI - and a port put in last week.    The treatment starts next week.   One great thing I did for myself was take advantage of the peer to peer program of the Anal Cancer Foundation.   They put me in contact with a great guy in Florida who has been out of treatment for 20 months and has been a great source of comfort, tips, and understanding by phone and email.   One tip he gave me was to get a "Tushy", a simple bidet that fits under the toilet seat.  $99 through Amazon.  I installed it a few days ago and have been practicing :)  I can see how it will help when my bumm becomes sensitive.  At his suggestion I also got a hand held shower attachment.  

    I got approved by the DC govt for a medical marijuana license but, of course, it has not arrived yet.   I hope it comes before treatment starts because as my mentor in Florida and others have said it seems to help a lot.   I haven't smoked grass since the 70's but whatever works.   

  • dcboy
    dcboy Member Posts: 4 Member
    Post Treatment

    It has been a month since I finished treatment and the comments here on trying to get back to a normal life are helpful.  They help me be patient and realize it is going to be a couple months before I can fully get back to a relatively normal social life with friends. 

    Post treatment the worst part was the pain from the radiation burns which started the 5th week of treatment and extended to at least 2 weeks after.  Thank you sitz baths,  oxy, and medical marijuana, for getting me through those weeks.   The pain is largely gone now and I can now pretty much poop like a normal person.   The main issues are, like Ddorson, fatigue and loss of appetite, particularly in the evening.   I see the chemo/radiation doctors next week and I am hoping they will have some answers and suggestions on how I can help myself get better faster.   Still a ways off before the first scan to confirm this was all worth it.