questions

teacherofkids
teacherofkids Member Posts: 14
edited March 2014 in Anal Cancer #1
I am female and have recently finished my treatment of chemo and radiation for anal cancer. 15 days in fact. It was a long hall and I had a hospital visit for 7 days right after the second round of chemo. My tumor was 4.3 in size and 2 lymph nodes were involved. I am thinking positive but won't know anything until May. I have many questions and was wondering if someone could help answer them. I had diarehha and now I am contipated. Is that normal? I am having a rectal exam April to see if I responded to treatments and then will have the rectal ultrasound in May. Is that normal protcal for checking the progress? I see some of you ahd pet scans. I had one much earlier but don't have one sceduled for the future. i feel pretty good other then the bowel issues. I haven't had sex yet and won't until my 3 week check up. I am very nervous about that too. Does anyone really know how they got this? I think about it all the time. Did your doctors talk to you about it? Did anyone feel the need for counceling afterwards? I feel it is hard to go back to normal because what is normal. Please respond if you can help answer my many questions. Thanks

Comments

  • SueRelays
    SueRelays Member Posts: 485
    #2
    Where to start :) ???
    Where to start :) ??? What is normal...is a question I asked myself recently. I have now been through two different cancers, and had my anal cancer spread to my liver. so I juat had a liver resection 4 weeks ago. Don't worry though...they say this only happens in a like 5% of anal cancers. Just seem to be that unlucky lately.
    Did they talk to you about using a dilator? To open the vagina after it has been basically fried from the radiation? They gave me one, and I was so wary and uncomfortable even thinking about using it......but it was necessary. Sex at least for me, took quite a bit of time and patience. It was just extremely uncomfortable....but trust me, it does get back to normal :) ~~
    I also had the D then would be constipated. Seemed to constantly bounce back and forth, and take one pill to stop one thing and one for the other....
    And I also had rectal exams, and never had any pet or cat scans after all my treatment. They said they were watching it close enough during that time, and didn't think anything further was necessary. I did had a biopsy 3 months after treatment was over....that came back 100% cancer free.
    I looked up this nasty cancer everywhere I could.....but this, just like all the others.....has no known reason, other than HPV, but they said in my case, if it was caused by that, I would have had an abnormal pap smear at some point, and I never did.
    The good news is YOU ARE DONE with treatment, and on your way to healing. It does happen fairly quickly. You will be amazed.
    If you feel like you need to talk to a counselor, by all means do. No one knows the thoughts that invade our brain once you have had cancer. As caring and supportive as our friends and family may be, if they haven't been through it, they can't relate 100%. I have found these boards to be a great help, and comfort.
    I wish you all the best, and please feel free to contact me any time !!
    Sue
  • susan1069
    susan1069 Member Posts: 30
    #3
    Where I Got It
    I know for me, it was caused by HPV. Two years ago, I had an abnormal PAP and at that time it was discovered I had the HPV virus. After that, I needed to go in every 3, then every 6 months for PAPs, which were all normal. However, now that I know that my anal cancer was also cause by this virus, I'm wondering why I wasn't also getting rectals more than once a year. My annual ob/gyn exam was where my tumor was discovered. Just a routine exam. And even though my tumor was under 2 cm, it was poorly differentiated, and had already spread to a lymph node. The biopsy pretty much removed the entire tumor and the doctors don't feel anything in there. I did get a PET scan prior to treatment, along with a couple of CT scans, and after treatment they will do both again. When you said you had 15 days of treatment, is that all the radiation you received? I was scheduled for 28-30 treatments and I will be half-way through tomorrow. Also, they insert a vaginal dilator for every treatment, I guess to keep my vagina from closing up. Did anyone else get this?

    I understand why you would feel the need for counseling. This whole situation is extremely traumatic and even if I'm declared cancer-free at some point, I won't ever feel "normal" again. I'll always be worried about it coming back.
  • susan1069
    susan1069 Member Posts: 30
    #4
    SueRelays said:

    Where to start :) ???
    Where to start :) ??? What is normal...is a question I asked myself recently. I have now been through two different cancers, and had my anal cancer spread to my liver. so I juat had a liver resection 4 weeks ago. Don't worry though...they say this only happens in a like 5% of anal cancers. Just seem to be that unlucky lately.
    Did they talk to you about using a dilator? To open the vagina after it has been basically fried from the radiation? They gave me one, and I was so wary and uncomfortable even thinking about using it......but it was necessary. Sex at least for me, took quite a bit of time and patience. It was just extremely uncomfortable....but trust me, it does get back to normal :) ~~
    I also had the D then would be constipated. Seemed to constantly bounce back and forth, and take one pill to stop one thing and one for the other....
    And I also had rectal exams, and never had any pet or cat scans after all my treatment. They said they were watching it close enough during that time, and didn't think anything further was necessary. I did had a biopsy 3 months after treatment was over....that came back 100% cancer free.
    I looked up this nasty cancer everywhere I could.....but this, just like all the others.....has no known reason, other than HPV, but they said in my case, if it was caused by that, I would have had an abnormal pap smear at some point, and I never did.
    The good news is YOU ARE DONE with treatment, and on your way to healing. It does happen fairly quickly. You will be amazed.
    If you feel like you need to talk to a counselor, by all means do. No one knows the thoughts that invade our brain once you have had cancer. As caring and supportive as our friends and family may be, if they haven't been through it, they can't relate 100%. I have found these boards to be a great help, and comfort.
    I wish you all the best, and please feel free to contact me any time !!
    Sue

    Sue, I was wondering..
    How did they discover that the cancer had spread to your liver?
  • z
    z Member Posts: 1,414 Member
    #5
    Questions
    Teacherofkids,

    I was dx with Anal Verge Cancer Stage II NOMO. I went through the standard treatment - 1 infusion of mytomicin on 1st chemo day with a 96 hour 5FU drip for weeks 1 and 5, along with 30 radiation zaps. Before treatment I had a pet-ct to rule out any cancer in other areas. I completed treatment on 6-30-09. I had another pet-ct on 11-10-09. I have had 2 biopsys 1 on 9-1-09 and 1 on 3-4-10. My next scheduled pet-ct scan is in May. I have seen a dr about every 3 months and have had dres. All my tests show ned. As far as sex, I haven't practiced for I have no partner. I was given a dialator to use to keep the vagina opening open. Belive me I would much rather use a man. That will be my next goal. I think if you take it slow in the beginning you will eventually be fine. Our bodies have been burned and shrunk, so you have to take it easy on yourself. As far as how I developed anal cancer - I used to smoke cigs ( 35 years), I have HPV, and I wasn't eating right for many years. I quit smoking on 5-7-09 and feel better than I have in years. I am trying to eat better. I hope I have answered some of your questions. I wish you well Lori
  • pjjenkins
    pjjenkins Member Posts: 173
    #6
    I wish we had this board when I was going through treatment. Your questions are spot on. Here is my story. I was given my diagnosis 1/4/2008 and treatment ended in early March, 2008. I have been cancer free so far and have my next testing in May.

    Your tumor was larger than mine but maybe, as mine did, it crossed the dentate line (border between anus and rectum). That would be a reason for further examination of your rectum.I had a follow-up PET scan about 2 months following end of treatment and then one a year after that. I am hoping they will do another PET scan this year largely because I also had uterine cells "suspicious for cancer" at the beginning of all this, too.

    The cycles of diarrhea and constipation continue for me albeit I am now and expert and they are very much diminished. I use Citrucel or Metamucil or a generic of these just about every day and this has helped immensely. I would suggest keeping a diary or log and using it when you have appointments. I gather this is fairly common. It was worst during the first 6 months following treatment. I suggest carrying an extra change of clothing for awhile even. It has been well over a year since I had that level of problem.

    I am hopping mad about one thing. No one warned my about keeping my vagina open and so it has fused closed. My husband has a powerful fear of radiation so was reluctant for months to try anything and by the time we did, there was no entry. I have felt doctors maybe felt that since we were in our mid-sixties that - dang who knows what!!! So, ladies, get and use those vaginal dilators or other means to prevent having my problem. After many discussions and further examinations, I am using dilators to try to reopen my vagina but two weeks ago have found I have not made much progress in six months of trying. I am not sure what we will do... Trying has confirmed that I still enjoy orgasm but my mate continues to be totally freaked out. We will do some counseling but have procrastinated on getting started. This will be a thread in my continuing story.

    Regarding how we "got" this, I think they really don't know. I had a genital wart for a couple of decades but doctors always indicated it was nothing to worry about unless my partner and I wanted to do something about it. (We didn't.) But I wonder if it might not have been a precursor. Did all you all out there have a squamous cell carcinoma? I have told people that I had a skin cancer where the sun don't shine because I mooned the world so often! I sort of wish I had! By the way, the radiation did away with the wart, too.
  • lizdeli
    lizdeli Member Posts: 569 Member
    #7
    susan1069 said:

    Where I Got It
    I know for me, it was caused by HPV. Two years ago, I had an abnormal PAP and at that time it was discovered I had the HPV virus. After that, I needed to go in every 3, then every 6 months for PAPs, which were all normal. However, now that I know that my anal cancer was also cause by this virus, I'm wondering why I wasn't also getting rectals more than once a year. My annual ob/gyn exam was where my tumor was discovered. Just a routine exam. And even though my tumor was under 2 cm, it was poorly differentiated, and had already spread to a lymph node. The biopsy pretty much removed the entire tumor and the doctors don't feel anything in there. I did get a PET scan prior to treatment, along with a couple of CT scans, and after treatment they will do both again. When you said you had 15 days of treatment, is that all the radiation you received? I was scheduled for 28-30 treatments and I will be half-way through tomorrow. Also, they insert a vaginal dilator for every treatment, I guess to keep my vagina from closing up. Did anyone else get this?

    I understand why you would feel the need for counseling. This whole situation is extremely traumatic and even if I'm declared cancer-free at some point, I won't ever feel "normal" again. I'll always be worried about it coming back.

    During treatment
    Susan
    I did have the dilator during treatment as well. Makes a big difference. I'm not having problems. Where did you get your treatment?
    Liz
  • susan1069
    susan1069 Member Posts: 30
    #8
    lizdeli said:

    During treatment
    Susan
    I did have the dilator during treatment as well. Makes a big difference. I'm not having problems. Where did you get your treatment?
    Liz

    Treatment
    Liz,

    I'm in Northeast PA, ourside of Scranton. You?

    Susan
  • susan1069
    susan1069 Member Posts: 30
    #9
    lizdeli said:

    During treatment
    Susan
    I did have the dilator during treatment as well. Makes a big difference. I'm not having problems. Where did you get your treatment?
    Liz

    Treatment
    Liz,

    I'm in Northeast PA, outside of Scranton. You?

    Susan
  • lizdeli
    lizdeli Member Posts: 569 Member
    #10
    susan1069 said:

    Treatment
    Liz,

    I'm in Northeast PA, outside of Scranton. You?

    Susan

    Treatment
    I'm in Colorado but was treated in Texas. There aren't many radiologist using the dilataor during treatment and I'm glad to hear that some are using it besides MD Anderson.
    Liz
  • lil lady
    lil lady Member Posts: 36
    #11
    lizdeli said:

    Treatment
    I'm in Colorado but was treated in Texas. There aren't many radiologist using the dilataor during treatment and I'm glad to hear that some are using it besides MD Anderson.
    Liz

    dialator
    I was not given the dialator until after my treatment ended
  • SueRelays
    SueRelays Member Posts: 485
    #12
    susan1069 said:

    Sue, I was wondering..
    How did they discover that the cancer had spread to your liver?

    They actually found the
    They actually found the tumor on my liver while performing a cat scan to do a one year check up on my lung :(. Good thing I am still having all the follow ups though....or who knows had bad it would have got.
  • SueRelays
    SueRelays Member Posts: 485
    #13
    pjjenkins said:

    I wish we had this board when I was going through treatment. Your questions are spot on. Here is my story. I was given my diagnosis 1/4/2008 and treatment ended in early March, 2008. I have been cancer free so far and have my next testing in May.

    Your tumor was larger than mine but maybe, as mine did, it crossed the dentate line (border between anus and rectum). That would be a reason for further examination of your rectum.I had a follow-up PET scan about 2 months following end of treatment and then one a year after that. I am hoping they will do another PET scan this year largely because I also had uterine cells "suspicious for cancer" at the beginning of all this, too.

    The cycles of diarrhea and constipation continue for me albeit I am now and expert and they are very much diminished. I use Citrucel or Metamucil or a generic of these just about every day and this has helped immensely. I would suggest keeping a diary or log and using it when you have appointments. I gather this is fairly common. It was worst during the first 6 months following treatment. I suggest carrying an extra change of clothing for awhile even. It has been well over a year since I had that level of problem.

    I am hopping mad about one thing. No one warned my about keeping my vagina open and so it has fused closed. My husband has a powerful fear of radiation so was reluctant for months to try anything and by the time we did, there was no entry. I have felt doctors maybe felt that since we were in our mid-sixties that - dang who knows what!!! So, ladies, get and use those vaginal dilators or other means to prevent having my problem. After many discussions and further examinations, I am using dilators to try to reopen my vagina but two weeks ago have found I have not made much progress in six months of trying. I am not sure what we will do... Trying has confirmed that I still enjoy orgasm but my mate continues to be totally freaked out. We will do some counseling but have procrastinated on getting started. This will be a thread in my continuing story.

    Regarding how we "got" this, I think they really don't know. I had a genital wart for a couple of decades but doctors always indicated it was nothing to worry about unless my partner and I wanted to do something about it. (We didn't.) But I wonder if it might not have been a precursor. Did all you all out there have a squamous cell carcinoma? I have told people that I had a skin cancer where the sun don't shine because I mooned the world so often! I sort of wish I had! By the way, the radiation did away with the wart, too.

    I did have squamous cell as
    I did have squamous cell as well. And I too would have loved to have this site to turn to when I was going through treatment. I really felt completely isolated from everyone else with cancer, as mine was so different, and not all that dignified of a subject :)!
    Isn't it amazing how much we learn from each other, rahter than our doctors. I was not told about the dilator until almost the end of my treatment too. So was also pretty painful....think it would have helped to be using it along the way.

    Nice to know we are all there for each other now!!!
  • pjjenkins
    pjjenkins Member Posts: 173
    #14
    SueRelays said:

    I did have squamous cell as
    I did have squamous cell as well. And I too would have loved to have this site to turn to when I was going through treatment. I really felt completely isolated from everyone else with cancer, as mine was so different, and not all that dignified of a subject :)!
    Isn't it amazing how much we learn from each other, rahter than our doctors. I was not told about the dilator until almost the end of my treatment too. So was also pretty painful....think it would have helped to be using it along the way.

    Nice to know we are all there for each other now!!!

    Thanks for being there! Thanks, Joanne, for this Discussion Bd!
    It really is nice to know a few of the what is it? Fewer than 5000 new diagnoses per year? Here in Maine, the ACS runs "Living with Cancer" conferences and I have been on the steering committee 2 years now. The closest I have gotten to having anything related to our specific cancer is this year, we will have a session on post radiation symptoms with my radiation oncologist as speaker. I actually tried to get it to be post pelvic radiation, but even that was too narrow!

    Thanks, for a pertinent Discussion board... Nice to start to get a sense of how we all get treated, etc. etc.!

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