Stage 3b Anal Cancer

i too was stage IIIb. I was actually diagnosed by having an enlarged right inguinal node removed. I had no other signs or symptoms other than the enlarged node. I got the standard 5fu and mitomycin protocol and 30 radiation treatments. I never had any additional chemo. I completed treatment 2 yrs and 2 months ago and so far all my scans have shown NED. I am cautiously optimistic. The statistics that I have seen are not great for stage IIIb, but my oncologist tells me much better statistics, which leaves me confused and frustrated. I'm probably strange but I am scared that he won't monitor me as closely or thoroughly since he says the statistics are in my favor.....I'm sure that is just this crazy disease controlling my thoughts!

EvelynB said:

Krissy

The one thing I am learning from this experience is to live in the moment. Every time I catch my thoughts wandering, I remind myself that today is all any of us have. This point was really driven home for me one day on the way home from a treatment, we were in a near fatal accident when a sleep-deprived driver(he had been sitting at the hospital for 3 days with a very close relative who had just passed that morning) came through an intersection and hit us broadside.  All we can do is be thankful for this day and hope for the best. (Easier said than done, I know) The fact that you have made it this far seems like a really good sign to me. How often are you having scans?

I've had scans every 6 months but when I had the last one, 5 months ago, my oncologist said we would now go to yearly scans. 

EvelynB said:

NCCN Guidelines

Krissy, According to NCCN.org guidelines, you should be followed with scans for three years.

 

Jackie

I had stage III with mets to the lymph nodes.  I was treated with Cisplatin once a week for 7 weeks and 5FU (24 hrs a day Mon-Fri via pic line and chemo in a fanny pack) for 7 weeks.  Also had radiation 5 days a week for 30 minutes for seven weeks.  I was told that I was being treated aggressively because of the lymph node mets.  I did not have any follow up chemo.  I am 6 years NED.  

What type of chemo follow up is your doctor recommending?  

Liz

EvelynB said:

Liz

Liz,   Wow! Your dr was very aggressive in treating you! You must have really went through a hard time. It looks like it paid off though! I am not sure what he is going to recommend. I was so stunned when he told me, I couldn't even think straight to formulate any questions. Now I have a laundry list of questions so I will go back to him with my list and armed with a little more information. I really wish he had been more aggressive to start with {like your dr was} rather than wanting to tear me down again now.  Your story is so encouraging and inspiring. Is there anything you have done on your own that you would recommend? I have a friend that had stage 4 throat cancer with mets to 4 lymph nodes. She had 7 weeks of radiation after surgery but refused chemo. She is 3 years out and still NED. She is one of the most positive people I know and she constantly tells me not to worry, find joy and happiness in every single day, exercise{which I have done for many years...until now} and eat a healthy diet but not to deny myself of occasional indulgences.  

 

I apologize for confusing your names!  So sorry.  That's what I get for trying to catch up after being away from the board for too long. 

Evelyn, I think you might want to seek a second opinon about the precautionary follow up chemo recommendation since it doesn't seem to be a protocol others have experienced.  I do know someone who had rectal cancer vs. anal cancer who had follow up chemo. Do you know how many cases of anal cancer your oncologist has dealt with?  It's your body and your life so you have every right to ask these questions.

As far as anything I have personally done...throughout the treatment process I became a germophobic.  I wouldn't touch any door knobs, avoided small children and large crowds, washed my hands constantly, only used paper towels to dry my hands, rinsed my mouth with baking soda 3 plus times a day, etc.. I tried to avoid infection.  I was very fortunate and I did not experience any infections, blood levels that would prevent/delay chemo, mouth sores, etc.  The side effects of the chemo and radiation weren't pleasant by any means.  Particularily the radiation.  I re-read Viktor Frankl's book - Man's Search for Meaning - during treatment and worked very hard to strenghten my mind and train it to overcome the challenges during treatment.  I remember memorizing how many minutes and seconds each turn of the radiation machine took.  There were a total of 13 "turns" and I knew exactly how long each each one was. One time the radiation tech told me I was done.  I said, "no I am not, it was only 12 versus 13".  He said yes you are.  Okay, so I get dressed and before I got to the door he tells me, "You were right".  So we had to set up all over again for the last "turn" of the machine which was 1 minute and 16 seconds.  

I lost a lot of weight during treatment and I'm not big to start with.  So after the nutritionist actually yelled at me and told me to eat whatever it took, I did.  I ate what I could tolerate.  McDonald's plain cheeseburgers, vanilla ice cream, gingerale and Greek cookies.  Lived on that for 3 months.  Didn't gain, didn't lose much more weight.  

Most of all - I went into "fight mode".  I also relied heavily on my faith which I feel helped tremendously.

I hope that your doctor provides the answers you need.  Wishing you well.

Liz

EvelynB said:

Liz

Liz,

   You said something in your message that made me FINALLY realize what is going on. I could just hug you!!! My cancer diagnosis was anal squamous cell carcinoma. However, when I had my first PET scan, they sent the report back as Rectal cancer because the tumor had grown up into the rectal area but was not attached. Although my oncologist knew that, he apparently just made a mistake on my last visit because he was thinking it was rectal cancer. I called this morning as soon as I read your message and I just got the call back confirming it was a mistake. WHEW!!!!! Thank you so much!    

I did the same thing you did during my radiation treatments. I counted the turns and seconds between turns. I am going to read Viktor Frankl's book. I've heard it's really good and you've inspired me to read it. My doctors and nutrionist told me the same thing yours told you. Eat whatever you can so, for the first time in years, I've been eating "junk" foods. It has helped me keep my weight up but, I worry about the whole "Sugar feeds cancer" theory. I tried cutting out carbs and sugar because the thought is that if your body is in a ketogenic state, the cancer has nothing to feed on. However, I got so weak and immediately started losing weight so I'm back on carbs at least.  I have to tell you....knowing that you took their advice and ate whatever you could and that you are still NED makes me worry much less.

Thanks again. You have been more help than you can imagine.

Evelyn  

I was thinking that it was sounding like rectal vs. anal cancer because when they first mis-diagonosed me with rectal that is the type of protocol they were talking about including a colostomy - temporary but possibly permanent.

I am so glad you were able to clarify with your doctor!!!

Be well,

Liz

I had the same treatment prodicol that Lizideli had.  Cisplatin once a week and a fanny pack of FU5 by pickline 5 days a week and radiation 5 days a week, all for seven weeks.  I was stage II invasive anal Cancer that had migrated into the rectum.  Many docs would refer and still refer to my Cancer as rectal.... The tumor had begun to invade the vaginal wall....

I was incredibly lucky to have Lizideli call me and explain a LOT of things that would have scared me witless, and then to meet her twice in Houston when our appts overlapped.  I will be 4 years NED in October!