Stage 3b Anal Cancer

24

Comments

  • horsepad
    horsepad Member Posts: 146 Member
    I was stage 4, mets to the

    I was stage 4, mets to the liver.  I had 4 oncologists and no one ever suggested more chemo.  It's been 4 years since diagnosis.  I was told if it came back, they would treat it with chemo.

  • EvelynB
    EvelynB Member Posts: 72
    eihtak said:

    chemo, colostomy, and all that jazz.....

    My story is very similar and just want to ditto on the ostomy.....not much of an issue once you get in a routine and find products that work for you.  I've had my ostomy for 4 1/2 years now and can truely say it seldom interfers with any of my plans and is easily managed.  There may be an occasional bad day with skin breakdown, gas, or minor clothing issue, but 99% of the time it is not a problem.  My chemo for recurrance was 5Fu/Cisplatin as well and that was following surgery to remove the lower lobe of my lung.  I too had a bad week each cycle followed by feeling mostly well until the next.  My hair and nails suffered terribly about 2-4 weeks AFTER the last treatment which I did not expect.  All on the mend now!

    katheryn

    Katheryn

    Katheryn,

      How long has it been since your recurrence and how long after initial treatment did it show up? Glad to hear from several people that the colostomy is not so bad. It's hard to imagine now but I guess it's all in what we get used to.

    Evelyn 

  • EvelynB
    EvelynB Member Posts: 72
    horsepad said:

    I was stage 4, mets to the

    I was stage 4, mets to the liver.  I had 4 oncologists and no one ever suggested more chemo.  It's been 4 years since diagnosis.  I was told if it came back, they would treat it with chemo.

    Wow!

    Horsepad,

        That is so GREAT to hear!!!!!!!!!!!! I am so happy for you!  What a ray of hope you are. Thanks so much for posting.

    Evelyn

  • Krissy59
    Krissy59 Member Posts: 33
    IIIb

    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!

  • eihtak
    eihtak Member Posts: 1,473 Member
    EvelynB said:

    Katheryn

    Katheryn,

      How long has it been since your recurrence and how long after initial treatment did it show up? Glad to hear from several people that the colostomy is not so bad. It's hard to imagine now but I guess it's all in what we get used to.

    Evelyn 

    Evelyn....

    Hi,

    I was initially dx in Jan. 2011 and treated with 5FU/Cisplatin and radiation. I was in a clinical trial involving Cetuximab as well. (I was only part of the trial for a couple doses when unrelated issues with my ostomy adjustment caused me to be taken out of the trial so finished with standard treatment) My ostomy surgery was done prior to starting radiation and was originally intended to be reversed when done but radiation damage has led to it being now permanent.  In March of 2012 I was dx with a rare breast cancer that does not usually show up until late stage, but fortunately it was seen on my follow-up Pet Scan. For that I had a double mastectomy. After that all scans and blood work had been great and I felt good too, until a follow-up scan in Jan. 2015 revealed a mass on my lung the size of a peach!! It was biopsied and determined to be a recurrance of anal cancer. I had surgery to remove the left lower lobe of my lung that contained the mass and 3weeks later followed with a 3 month course of 5FU/Cisplatin again. Although my doctor is confident that the mass was succesfully removed with surgery, the chemo was given at this point as adjuvent to catch any rouge cells. A couple weeks after treatment ended, a scan revealed all clear, yet a blood clot on my right lung. I began injections of lovenox (blood thinner) for two weeks as well as am now on Warfarin until ???? I will be scanned again the end of October, but once again.....I feel great! I used to think that that meant all was good, but cancer is so sneaky that it is often asymtomatic.

    So in answer to your question, 7 months since dx with recurrance and almost 4 1/2 years since initial treatment ended.

    When and if you end up with a colostomy I have lots of helpful links and tips to share....but know that there is a lot of support out there and a variety of products to help make it work for you.

    Be well,

    katheryn

  • EvelynB
    EvelynB Member Posts: 72
    eihtak said:

    Evelyn....

    Hi,

    I was initially dx in Jan. 2011 and treated with 5FU/Cisplatin and radiation. I was in a clinical trial involving Cetuximab as well. (I was only part of the trial for a couple doses when unrelated issues with my ostomy adjustment caused me to be taken out of the trial so finished with standard treatment) My ostomy surgery was done prior to starting radiation and was originally intended to be reversed when done but radiation damage has led to it being now permanent.  In March of 2012 I was dx with a rare breast cancer that does not usually show up until late stage, but fortunately it was seen on my follow-up Pet Scan. For that I had a double mastectomy. After that all scans and blood work had been great and I felt good too, until a follow-up scan in Jan. 2015 revealed a mass on my lung the size of a peach!! It was biopsied and determined to be a recurrance of anal cancer. I had surgery to remove the left lower lobe of my lung that contained the mass and 3weeks later followed with a 3 month course of 5FU/Cisplatin again. Although my doctor is confident that the mass was succesfully removed with surgery, the chemo was given at this point as adjuvent to catch any rouge cells. A couple weeks after treatment ended, a scan revealed all clear, yet a blood clot on my right lung. I began injections of lovenox (blood thinner) for two weeks as well as am now on Warfarin until ???? I will be scanned again the end of October, but once again.....I feel great! I used to think that that meant all was good, but cancer is so sneaky that it is often asymtomatic.

    So in answer to your question, 7 months since dx with recurrance and almost 4 1/2 years since initial treatment ended.

    When and if you end up with a colostomy I have lots of helpful links and tips to share....but know that there is a lot of support out there and a variety of products to help make it work for you.

    Be well,

    katheryn

    KATHERYN

    Wow. You have really been through it yet you seem to have such a positive attitude. I commend you highly! I hope I can remain positive no matter what the future holds. It definitely helps talking to people on here. It helps me to not feel so isolated and alone. Even though I have a wonderful support system, I sometimes feel very different and separated from everyone around me.

  • EvelynB
    EvelynB Member Posts: 72
    Krissy59 said:

    IIIb

    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!

    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?

  • Krissy59
    Krissy59 Member Posts: 33
    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?

    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
    EvelynB Member Posts: 72
    Krissy59 said:

    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. 

    NCCN Guidelines

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

     

  • lizdeli
    lizdeli Member Posts: 569 Member
    EvelynB said:

    NCCN Guidelines

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

     

    Jackie

    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
    EvelynB Member Posts: 72
    lizdeli said:

    Jackie

    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

    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.  

     

  • lizdeli
    lizdeli Member Posts: 569 Member
    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.  

     

    Evelyn and Jackie

    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
    EvelynB Member Posts: 72
    lizdeli said:

    Evelyn and Jackie

    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

    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  

  • lizdeli
    lizdeli Member Posts: 569 Member
    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  

    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

  • mp327
    mp327 Member Posts: 4,440 Member
    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  

    EvelynB

    The confusion between anal and rectal cancer seems widespread among healthcare professionals.  I can't tell you how many times I've had to correct technicians when going for scans or tests, as they seem to continue to refer to my cancer as "rectal."  I always take those opportunities to give them a little bit of a lesson as to the difference.

    As for the old "sugar feeds cancer" theory, my med onc just rolled his eyes when I brought that up one day.  He does not buy into it at all.  Before that, I was avoiding sugar in any way possible, thinking it was going to increase my odds of staying healthy.  However, like you, I got very weak and had absolutely no energy.  After my visit with my doctor, I started eating carbs and felt so much better.  I think the key is to get the carbs in a healthy way, i.e. fruits and veggies, and not donuts and brownies.  Smile  Sadly, I eat my share of sweet treats!

    Martha

  • EvelynB
    EvelynB Member Posts: 72
    mp327 said:

    EvelynB

    The confusion between anal and rectal cancer seems widespread among healthcare professionals.  I can't tell you how many times I've had to correct technicians when going for scans or tests, as they seem to continue to refer to my cancer as "rectal."  I always take those opportunities to give them a little bit of a lesson as to the difference.

    As for the old "sugar feeds cancer" theory, my med onc just rolled his eyes when I brought that up one day.  He does not buy into it at all.  Before that, I was avoiding sugar in any way possible, thinking it was going to increase my odds of staying healthy.  However, like you, I got very weak and had absolutely no energy.  After my visit with my doctor, I started eating carbs and felt so much better.  I think the key is to get the carbs in a healthy way, i.e. fruits and veggies, and not donuts and brownies.  Smile  Sadly, I eat my share of sweet treats!

    Martha

    Martha

    All of my doctors, too, said they don't buy into the "sugar feeds cancer" theory. You are right-the carbs should come from a healthy source (and most days they do) but, like you, I have been indulging in a few sweet treats. For so many years, I lived a very disciplined lifestyle and denied myself of these goodies. I did all the "right" things "They" tell you to do and still I ended up with cancer. So...going forward I will probably be a little more moderate. 

  • mp327
    mp327 Member Posts: 4,440 Member
    EvelynB said:

    Martha

    All of my doctors, too, said they don't buy into the "sugar feeds cancer" theory. You are right-the carbs should come from a healthy source (and most days they do) but, like you, I have been indulging in a few sweet treats. For so many years, I lived a very disciplined lifestyle and denied myself of these goodies. I did all the "right" things "They" tell you to do and still I ended up with cancer. So...going forward I will probably be a little more moderate. 

    Evelyn

    I have the same attitude.  After denying myself some of the treats I love for many years and still being diagnosed with cancer, I have changed my thinking.  Life is for living and we need to enjoy it--and for me, that includes food!  My epitaph is to read "Thank God I had dessert!"  Smile

    Martha

  • EvelynB
    EvelynB Member Posts: 72
    mp327 said:

    Evelyn

    I have the same attitude.  After denying myself some of the treats I love for many years and still being diagnosed with cancer, I have changed my thinking.  Life is for living and we need to enjoy it--and for me, that includes food!  My epitaph is to read "Thank God I had dessert!"  Smile

    Martha

    Martha

    I love that!!

  • nicotianna
    nicotianna Member Posts: 209
    jad345 said:

    lung treatment

    Well after the first mets in the lungs they gave me 4 cycles of cisplatin and 5fu. That shrunk them somewhat then about 6 months later I had taxol which worked on the lungs but the anal tumor srarted growing again so they stopped the taxol and gave me radiation. That was in May - I have an appointment on Monday to see if there is some other chemotherapy they can try. Hope this is helpful to you.

    Jackie

    radiation

    Hi Jackie -  I am curious about your getting XRT (radiation) for an anal tumor.  Did you receive the standard protocal (mitomycin, 5FU & XRT)?  I was under the impression that the maximum dose of XRT is given in that protocol.

    Nic

  • Lorikat
    Lorikat Member Posts: 681 Member
    Tx

    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!