Anal Cancer

Brendaklein
Brendaklein Member Posts: 123 Member
in Anal Cancer #1
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  • Brendaklein
    Brendaklein Member Posts: 123 Member
    #2
    anal cancer

    Hello, I foundout 4 days ago I have anal cancer. I'm nervous and scared...I go for CAT scan We. and to my Doctor Thurs. I will find out then what I'm dealing with. Any advice?

  • mp327
    mp327 Member Posts: 4,440 Member
    #3
    Brendaklein

    So sorry you have gotten this diagnosis.  I hope your scan will show that the tumor is small and localized.  Before you go to the doctor, try to learn more about anal cancer.  One very good site to check out is www.NCCN.org.  You'll need to do a quick registration, which will give you access to lots of good information about diagnosis, treatment and follow-up guidelines.  Try not to panic until you find out more information, which your CT scan will also provide.  Many of us who have been through this, including myself, had successful treatment.  Mine was nearly 10 years ago!  Please let us know what your doctor says and what the plan is.  I wish you all the very best.

  • Brendaklein
    Brendaklein Member Posts: 123 Member
    edited May 2018 #4
    mp327 said:

    Brendaklein

    So sorry you have gotten this diagnosis.  I hope your scan will show that the tumor is small and localized.  Before you go to the doctor, try to learn more about anal cancer.  One very good site to check out is www.NCCN.org.  You'll need to do a quick registration, which will give you access to lots of good information about diagnosis, treatment and follow-up guidelines.  Try not to panic until you find out more information, which your CT scan will also provide.  Many of us who have been through this, including myself, had successful treatment.  Mine was nearly 10 years ago!  Please let us know what your doctor says and what the plan is.  I wish you all the very best.

    anal cancer

    Thank you very much..I will let you know..

  • Nana442
    Nana442 Member Posts: 30
    #5
    Brendaklein said:

    anal cancer

    Hello, I foundout 4 days ago I have anal cancer. I'm nervous and scared...I go for CAT scan We. and to my Doctor Thurs. I will find out then what I'm dealing with. Any advice?

    Your CAT scan will give

    Your CAT scan will give needed information to your doctor, then a plan will get started, you will get a lot of information so if you can bring someone with you to your appointments.  I hope and pray for the best news possible for you.  

  • Brendaklein
    Brendaklein Member Posts: 123 Member
    #6
    Nana442 said:

    Your CAT scan will give

    Your CAT scan will give needed information to your doctor, then a plan will get started, you will get a lot of information so if you can bring someone with you to your appointments.  I hope and pray for the best news possible for you.  

    anal cancer

    Thank you, tomorrow afternoon I will have the CAT scan. I'm afraid, hope it's small...I will see my Doctor to go over the scan

    Thursday. My husband will be with me.

  • Msmoxie
    Msmoxie Member Posts: 46 Member
    #7
    NCCN

    Hello... I had not known about the NCCN website... went there for the first time today.  I was quite surprised to read on their home page this exact statement:  "If you have been diagnosed with cancer, your best chance is to join a trial" but it does make sense ... as they are using FU 5 commonly and that was developed in 1974.  It appears that at least they are trying to research alternatives that will hopefully be less toxic, with less side-effects.  From reviewing numerous abstracts that are going to be presented at next weeks ASCO meeting the doctors KNOW of numerous serious side effects of the treatment.  Now, if they will acknowledge them to US as patients what they do/should know and understand how they ultimately effect our quality of life.  This is important to our healing and getting through these cancers.

    Sending you positive energies and a shared prayer for your cancer being found early / small / benign.

    Moxie

  • Brendaklein
    Brendaklein Member Posts: 123 Member
    #8
    Msmoxie said:

    NCCN

    Hello... I had not known about the NCCN website... went there for the first time today.  I was quite surprised to read on their home page this exact statement:  "If you have been diagnosed with cancer, your best chance is to join a trial" but it does make sense ... as they are using FU 5 commonly and that was developed in 1974.  It appears that at least they are trying to research alternatives that will hopefully be less toxic, with less side-effects.  From reviewing numerous abstracts that are going to be presented at next weeks ASCO meeting the doctors KNOW of numerous serious side effects of the treatment.  Now, if they will acknowledge them to US as patients what they do/should know and understand how they ultimately effect our quality of life.  This is important to our healing and getting through these cancers.

    Sending you positive energies and a shared prayer for your cancer being found early / small / benign.

    Moxie

    anal cancer

    I go this afternoon for my CAT scan results. Nerves on edge

  • Msmoxie
    Msmoxie Member Posts: 46 Member
    #9
    Concentrate on your faith and your personal strength

    I know these are anxious times and your nerves are on edge.  Do what helps you most to breath deeply / meditate / believe in your ability to rid yourself of this cancer.  Everyone is so very different.  I pray that you have excellent support around you with family and friends.  May your doctors be in the top five percent of their skills/area of expertise...  may they be considerate and understanding, supportive of the decisions you make and provide you all of the help that you need to deal with this.

    Sending positive energies your way,

    Moxie

  • Nana442
    Nana442 Member Posts: 30
    #10
    Brendaklein said:

    anal cancer

    I go this afternoon for my CAT scan results. Nerves on edge

    Prayers.

    Prayers.

  • Brendaklein
    Brendaklein Member Posts: 123 Member
    #11
    Msmoxie said:

    Concentrate on your faith and your personal strength

    I know these are anxious times and your nerves are on edge.  Do what helps you most to breath deeply / meditate / believe in your ability to rid yourself of this cancer.  Everyone is so very different.  I pray that you have excellent support around you with family and friends.  May your doctors be in the top five percent of their skills/area of expertise...  may they be considerate and understanding, supportive of the decisions you make and provide you all of the help that you need to deal with this.

    Sending positive energies your way,

    Moxie

    anal cancer

    Thank you very much. I got the results yesterday from my Cat scan. I am very lucky they descovered is soon. I have Anal Squamous cell carcinoma. Very near my anal sphincters. I will have Nigro protocol chemo and radiotherapy.

  • milliebee
    milliebee Member Posts: 7
    edited July 2018 #12
    Is alternative to colostomy if chemo & radiation don’t cure it?

    I finished chemo/radiation early April. Really sick with appropriately named 5-FU. Now am hearing different things from different docs. Radiologist said my May 22 post-treatment CAT scan was “fantastic.” Oncologist didn’t say much, but when i pressed him, he said “it was good,” without much enthusiasm.

    Both told me the surgeon, who I’d met only once, before my initial PET scan (and told me then, when I asked, that with stage 4 anal cancer patients, they do “pallative care,” which freaked me out).

    I know now I had/have stage 3c. The surgeon ordered a MRI July 13, which apparently showed lymph nodes gone and tumor greatly reduced, but she doesn’t know if what is left is tumor or scar tissue. She ordered a flex-sigmoidoscopy for next week. And said we’d do another in a month or six weeks to see if it’s growing or same. I asked her if she wanted to see May 22 CAT scan results to see if the July 13 MRI results had improved, but she said she didn’t need to. The sigmoidoscopy is her gold standard test.

    There have been other issues with fluid in lungs (have a mild case of pulmonary hypertension), making it hard to breathe (much improved now) and hair getting thinner, both happening 2 1/2 months after last chemo, which i think caused both

    The surgeon keeps mentioning she’d need to do a permanent colostomy or perhaps a resection because my anal tumor is actually high in my rectum. She said she has asked numerous surgeons at MD Anderson and other cancer hospitals if a temp colostomy, then a resection would be as good a cure as the permanent colostomy. I like and respect all 3 doctors, but am wondering if I should go to a cancer center for a second opinion? I read here about a specialist (non-surgeon) in recurrences at MD Anderson. My surgeon consults often with MDA surgeons, but didn’t know the oncologist some of you have mentioned.

    i am so confused. My pulmonologist is my favorite doctor. First time I met him, he asked, “What did you hear?” from other doctors? I think it’s one of the best questions a doctor has ever asked me, because then, like now, I felt like I was living in the Tower of Babel. (He also gives all of his patients his cell number so we can text or call whenever we need him).

    Is it because there are so few anal cancer patients that treatments have not changed in decades? I’ve been seatching online for hospitals that seem to deal most frequently with anal cancer, and can’t seem to find any standouts. Somebody suggested Vanderbilt, but i’m told it and others are focusing more on prevention through the vaccine.

    Sorry to write so much. But I don’t know what to do. And the surgeon’s comments make me feel that it’s urgent to do the two sigmoidoscopies to compare them, and then decide on which surgery to do if cancer is still there.

    How fast does anal cancer grow?

     

     

     

     

     

  • mp327
    mp327 Member Posts: 4,440 Member
    edited July 2018 #13
    milliebee

    This sounds like quite a dilemma.  I am (almost) a 10-year survivor of Stage 1 - 2 (depending on which of my doctors you ask--it was right on the line between the stages).  In all my years of follow-up, I've never had sigmoidoscopy performed.  I had annual colonoscopies for the first 5 years after treatment, along with numerous PET and CT scans.  My colorectal surgeon followed me every 3 months for the first couple of years by performing digital rectal exams and anoscopy in her office.  After the 2-year mark, it was every 6 months for awhile.  Now it is once yearly. 

    I don't understand why, if your scans have been clean, your surgeon would even mention doing surgery for a colostomy.  Many people have successful treatment for stage 3C anal cancer with the treatment you've already received--chemo/radiation.  Also, I was told that the radiation may continue working for up to 6 months after treatment ends, so that may be the case for you.  I certainly would not agree to any surgery without getting a second opinion.  I would be curious to know which doctors she has spoken to at MDA about your case.  Dr. Eng may be the doctor whose name you've seen mentioned on this site.  She specializes in treating anal cancer in advanced stages and she is at MDA.  I'm not sure where you are located, but MDA would probably be my first choice for a second opinion.  There are also some very good doctors in San Francisco at University of California San Francisco, Dr. Berry being one.  I spoke at a conference a few years ago and had the pleasure of meeting both Dr. Eng and Dr. Berry and will say that they are both very knowledgeable in the treatment of anal cancer and are very committed to finding better treatment.  People in the northeast have gotten very good care at Memorial Sloan-Kettering if that is closer to you.

    This is just my personal opinion, but I would definitely get a second opinion from a doctor who treats anal cancer on a regular basis.  I would not consent to surgery unless and until I had gotten the same opinion from another one or two doctors.  I wish you all the best as you pursue answers.

  • Michelle417
    Michelle417 Member Posts: 1
    edited July 2018 #14
    Brendaklein said:

    anal cancer

    Thank you very much. I got the results yesterday from my Cat scan. I am very lucky they descovered is soon. I have Anal Squamous cell carcinoma. Very near my anal sphincters. I will have Nigro protocol chemo and radiotherapy.

    Anal Cancer

    I was diagnosed in April and my treatment started May 21st for squamous cell anal cancer.  I had one tumor near my sphincter and completed 6 weeks radiation and 2 weeks of chemo on July 2, 2018.  The tumor looked like an external hemmerhoid.  I also had a little cancer spot on one node.  During my last week of treatment another lump popped out that the radiologist is assuming is a hemmerhoid but that's the way the first one started.  I have an appointment at end of July with surgeon and hoping for the best.  Besides that, I'm feeling great.  I keep using the creams on the burns and seem to be healing up okay.   I wish you the best!!!

  • milliebee
    milliebee Member Posts: 7
    #15
    Anal cancer

    mp327 - thank you so much for responding. I’m new on the board, and thought i had started a new thread, so couldn’t find this until this morning. I do have a new post about breathing difficulties.

    My CAT scan in May was not clear, but everything was much smaller. I think the MRI 10 days ago was better. I gather the sigmoidoscopy is to check on that. And she wants another one in six weeks.

    yes, Dr Eng is the MD Anderson doctor I want to consult. It’s within easy access of my home. Anyone know how it takes to get an appt.? should i wait to see if i still have evidence of cancer? 

  • mp327
    mp327 Member Posts: 4,440 Member
    #16
    milliebee

    I think in order to get an appointment with Dr. Eng, you would need evidence of recurrence or residual disease.  If your scope in 6 weeks shows recurrence or residual disease, I think the next thing to do would be to have another scan.  If cancer is still present, then I would begin the process of getting an appointment with Dr. Eng.  Keep in mind, however, that she may still not see you until you are at least 6 months post-treatment and cancer is still present.  From all of the conversations I've had with people who have seen her, she only sees patients whose initial treatment was not successful and have clinical evidence of that (scan, biopsy). 

  • annie4145
    annie4145 Member Posts: 218 Member
    edited July 2018 #17
    Brendaklein said:

    anal cancer

    Hello, I foundout 4 days ago I have anal cancer. I'm nervous and scared...I go for CAT scan We. and to my Doctor Thurs. I will find out then what I'm dealing with. Any advice?

    My only suggestion since I am

    My only suggestion since I am new to this is to make sure that you are comfortable with your doctor.  Are you being treated by a local doctor or a larger teaching hospital?  I will be treated at Stanford, but went to UCSF for a second opinion.  It was interesting to see that there is a slight difference in treatment protocol between the two facilities.  (I just was diagnosed wtih 3a, and will start treatment this Wednesday).

    Barbara

  • Ennis001
    Ennis001 Member Posts: 1
    edited August 2018 #18
    Squamous cell

    I am 63 female. I was diagnosed with squamous cell carcenoma August 25, 2017 when I had surgery.  5 & 1/2 weeks of chemo & radition October into November.  It was a T2 & nothing spread to my lympthnodes.   I am currently having pelvic floor therapy as well as seeing a fascia therapist for my overall lack of flexibility and some muscle spasms which I am experiencing in hips and legs.  Being such a low incidence cancer I feel like I am out here just trying to figure out how best to continue to help myself through the healing process both short term and long term.  Thanks

  • annie4145
    annie4145 Member Posts: 218 Member
    #19
    Welcome Ennis001,

    Welcome Ennis001,

     

    I am glad that it hasn't spread.  I am just starting so can't give you any feedback except to say that this a good site for questions and I am sure that other people will give you some advice.   

    Barbara

  • mp327
    mp327 Member Posts: 4,440 Member
    edited August 2018 #20
    Ennis001 said:

    Squamous cell

    I am 63 female. I was diagnosed with squamous cell carcenoma August 25, 2017 when I had surgery.  5 & 1/2 weeks of chemo & radition October into November.  It was a T2 & nothing spread to my lympthnodes.   I am currently having pelvic floor therapy as well as seeing a fascia therapist for my overall lack of flexibility and some muscle spasms which I am experiencing in hips and legs.  Being such a low incidence cancer I feel like I am out here just trying to figure out how best to continue to help myself through the healing process both short term and long term.  Thanks

    Ennis001

    Welcome here.  I hope you find good support from the folks who have been through this treatment.  I went through chemo/radiation for a T2 anal tumor in 2008.  I'm still here and doing pretty well!  I will say that it took a good 2 years for me to feel like I had returned to almost normal.  I think we all have a new normal after this treatment.  But life is good for me, so no complaints.  Keep moving forward and come here when you have questions or concerns.  You are not alone.

  • Blue Moon
    Blue Moon Member Posts: 6
    edited August 2018 #21
    Cancer of the anal canal

    Hi everyone, I am new to this discussion group.

    Last November my husband was diagnosed with cancer of the anal canal.  He was so bad that they had to do a colostomy right away so that he could eliminate.  He had lost weight and was down to 99 lbs.  He had to have 2 operations as the first one gave him peritonitis.  He also has a mucus fistula.  He has refused to have the chemo and radiation treatment.  He is in a lot of pain and is unwilling to take anything stronger than tylenol 3.

    I need to give you a little more information about my husband in that he is not your 'normal average guy', he is of the belief that the body can heal itself given the right circumstances.  He has eliminated a lot of toxins from his diet including sugar, carbs, processed food etc.  we are also (and always have been) vegetarians (almost vegan).  While I find it very difficult to watch him suffer I am a strong believer in that it is (and has to be) his choice on how he wants to proceed with treatment (if any).

    Because he has refused the chemo and radiation I find that the oncologist is not really interested - no follow ups have been scheduled and we are only maintaining contact with him because we requested it (not the oncologist).  I should add that we live in Canada.

    What I am hoping to get from this group is information on what we can expect down the road.  I know this is a survivor group but you may have information you can share with me.  Right now my husband cannot sit and has to lie reclined most of the day.  I think the tumour is pressing on his bladder as he has to go to the bathroom frequently.  He cannot go out anywhere and can no longer drive etc.  Can anyone give me any insight as to how this might progress (given he is not taking any treatment).  How fast will this progress and in what manner?

    He is 64 and I am his sole caregiver.

     

    Many thanks everyone

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