It's official. I have an anal tumor and now I need some advice...

gjjmcsb
gjjmcsb Member Posts: 11
in Anal Cancer #1
It only took me 4 months but I finally got an actual picture and confirmation of my anal mass except the radiologists in Atlanta said he has never seen a tumor where mine is!! It is over 1cm and is in the perianal area between my vagina and anus. It is not touching my sphincter muscles but instead is pushed up against my vaginal wall. He said it could be benign or cancerous but that it was not a cyst because it was solid. Now im waiting for my doctor to call and set up a biopsy. My question to anyone who may know is do you know anything about perianal tumors? Are most benign or cancerous? How would treatment be different for a tumor in this area? Does anyone know anything???

Now the real wait begins as I find out if it is cancerous or not. Cannot believe this is happening. Thank everyone for your advice if you have any!

Comments

  • gjjmcsb
    gjjmcsb Member Posts: 11
    #2
    If anyone has written me
    If anyone has written me private messages...for some reason I cannot open them nor do i know who they are from. So that's why I haven't replied to you! I just cannot open it!
  • z
    z Member Posts: 1,414 Member
    #3
    gjjmcsb
    I hope that when there is a biopsy that it will show that is an infection to be healed with anti-biotics. If it is not because it is so small, I would imagine surgery to remove it would be the best way to cure it. My tumor was at the anal verge, which is right at the anal opening and I had the standard chemo/radiation and have been fine since 6-30-09. Please keep us posted and I wish you the best outcome. Lori
  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    gjjmcsb--
    It's possible for it to be either benign or cancerous, but many people diagnosed with anal cancer have tumors which are external. If it is not invading your sphincter, then it could possibly be removed by excision. Then I guess your doctor would have to decide whether or not you would need chemo and/or radiation. Please let us know when your biopsy is scheduled. I hope you don't have to wait very long.
  • gjjmcsb
    gjjmcsb Member Posts: 11
    #5
    mp327 said:

    gjjmcsb--
    It's possible for it to be either benign or cancerous, but many people diagnosed with anal cancer have tumors which are external. If it is not invading your sphincter, then it could possibly be removed by excision. Then I guess your doctor would have to decide whether or not you would need chemo and/or radiation. Please let us know when your biopsy is scheduled. I hope you don't have to wait very long.

    Thanks for your replies
    I am hoping I can get in next week for the biopsy. I don't know if he will do a needle biopsy or actually cut some tissue out. I hope to hear frok him tomorrow. Lori could you feel your tumor or see it from the outside? Just curious. He said I was a little over a half an inch in length but thought it felt bigger than thatnwhen we felt it with his finger. I am not sure what that means. That maybe it is bigger than thought, i also dont know how this tumor is related to my narrowing and stricture in my rectosigmoid colon. If it is then this is more serious because it is in my rectum too. I am scared about that.

    Thanks for your replies!!!
  • z
    z Member Posts: 1,414 Member
    #6
    gjjmcsb said:

    Thanks for your replies
    I am hoping I can get in next week for the biopsy. I don't know if he will do a needle biopsy or actually cut some tissue out. I hope to hear frok him tomorrow. Lori could you feel your tumor or see it from the outside? Just curious. He said I was a little over a half an inch in length but thought it felt bigger than thatnwhen we felt it with his finger. I am not sure what that means. That maybe it is bigger than thought, i also dont know how this tumor is related to my narrowing and stricture in my rectosigmoid colon. If it is then this is more serious because it is in my rectum too. I am scared about that.

    Thanks for your replies!!!

    gjjmcsb
    Yes, I could feel the tumor and see it. I had a punch biopsy, which I think is a good way to get the tissue needed. I know you had the colonoscopy and it was clear, which is a good thing. Please keep us posted, and I'm sending postive thoughts your way. Lori
  • rds711
    rds711 Member Posts: 113
    #7
    gjjmcsb
    I have gone through what you are doing now.. the discovery, the biopsy, the fear of the unknown, the FEAR period! I found that with the help and advice of the people on this board and the support of my family and friends I could stay focused and take it one step at a time. I really think the waiting is absolutley the worst. When we know what it is we're dealing with we can muster up strength and march forward.

    I am seeing the oncologist for the first time Monday and hopefully will begin the next step, treatment, soon. I am sooo ready.

    I had a second opinion after the first biopsy after getting such good advice here to do so.
    It was suggested I find someone who is a specialist. I Live in Ohio so after some research on the web realized Cleveland Clinic did have specialists.

    I would suggest taking someone with you to your appointments. I am a nurse but the first few appointments with Colorectal surgeon and specialist, I was like a deer in the headlights and couldnt remember anything of my nurses training, left the offices and realized I hadnt asked so many important questions that I should have, plus it seemed like I was only able to remember half of what they said. So I wised up and took my partner with me who had no problem rattling off all my questions and was able to help me remember what I was told.

    Take it one day at a time, looking far ahead is too overwhelming. I really hope that you get GOOD news and I will keep you in my prayers. Youre NOT alone!


    Randy
  • dchisholm5
    dchisholm5 Member Posts: 5
    #8
    gjjmcsb said:

    Thanks for your replies
    I am hoping I can get in next week for the biopsy. I don't know if he will do a needle biopsy or actually cut some tissue out. I hope to hear frok him tomorrow. Lori could you feel your tumor or see it from the outside? Just curious. He said I was a little over a half an inch in length but thought it felt bigger than thatnwhen we felt it with his finger. I am not sure what that means. That maybe it is bigger than thought, i also dont know how this tumor is related to my narrowing and stricture in my rectosigmoid colon. If it is then this is more serious because it is in my rectum too. I am scared about that.

    Thanks for your replies!!!

    Squamous cell in anal area
    I don't know if my situation is similar but a small nodule fd in regular sceduled colonoscopy/was sq cells. Then PET scan done and ONE lymph node very near by also sq cells covered. A needle biopsy done to determine that fact;then underwent 6 wks radiation and 2 weeks total of chemo-last rad was 11/03/11.Six weeks later another PET revealed NO cancer. Their only hope was shrinking the two sites, but just look! With lots and lots of prayers. I do return in 3 months for another PET scan...but I am now 68 yoa and have always been a poor eater!! Skinny most of my life. So eating properly and fatigue is my worse problem now. Squamous cell CA is not common in that area and does not like radiation I was told. Had rad burn because of strong rad but better than if no radiation. Life has its little problems but hope you have a strong supportive group around you.
  • conniegt
    conniegt Member Posts: 1
    #9
    anal/perianal tumors
    Hi just saw your post and realized you would just be getting ready to start treatment. In a few weeks I will be a 9 year survivor of anal cancer. I had a large tumor that was situated in the perianal area and reached back to the vaginal wall as well as into the sphincter muscle. After surgery there was immediate relief in the sphincter area. There were several small growth tumors radiating from this that also affected the sphincter. Most of the largest tumor could be removed except for a portion (very small) into the vaginal wall. The other smaller ones were removed. I had this for quite some time and avoided doing anything about it because of the embarassment associated with the area...foolish move as it would have started as a benign mass early on, instead I found myself with stage 4 anal cancer at 46 years old. Oddly enough I was the calmest one around me about this. I refused a colostomy temp. or otherwise and choose to go with the standard treatment of radiation plus chemo. In my case I had radiation 5 days a week for 8 weeks and then a week of specialised radiation utilizing crystals directing the radition straight into the remains of the largest (and stubborn) tumor. I had a port so my 3 chemo treatment periods were 5 days each with constant a constant chemo drip. (I was also administered a large bag dose in the ward before each 5day period.) Some form of radiation plus chemo lasting 5 to 12 weeks in total seems to be the standard. I did not lose the hair on my head though it did thin slightly, I was warned to expect up to a 50lb weight loss, not good since I only weighed about 135lbs at the time, I only lost 15 during treatment but continued to lose another 5lbs after treatment ended. All in all I breezed through treatment, nausea on the very first morning for about 5 minutes bad enough to literally bring me to my knees! but I took the medication for it and never had any nausea again. The worst part was the tiredness which may have had more to do with the chemo-related insomnia! All in all I was lucky enough to have very little in the way of side effects during treatment - but continue to deal with long term side effects which are certainly not readily apparent to anyone but me.
  • mp327
    mp327 Member Posts: 4,440 Member
    #10
    conniegt said:

    anal/perianal tumors
    Hi just saw your post and realized you would just be getting ready to start treatment. In a few weeks I will be a 9 year survivor of anal cancer. I had a large tumor that was situated in the perianal area and reached back to the vaginal wall as well as into the sphincter muscle. After surgery there was immediate relief in the sphincter area. There were several small growth tumors radiating from this that also affected the sphincter. Most of the largest tumor could be removed except for a portion (very small) into the vaginal wall. The other smaller ones were removed. I had this for quite some time and avoided doing anything about it because of the embarassment associated with the area...foolish move as it would have started as a benign mass early on, instead I found myself with stage 4 anal cancer at 46 years old. Oddly enough I was the calmest one around me about this. I refused a colostomy temp. or otherwise and choose to go with the standard treatment of radiation plus chemo. In my case I had radiation 5 days a week for 8 weeks and then a week of specialised radiation utilizing crystals directing the radition straight into the remains of the largest (and stubborn) tumor. I had a port so my 3 chemo treatment periods were 5 days each with constant a constant chemo drip. (I was also administered a large bag dose in the ward before each 5day period.) Some form of radiation plus chemo lasting 5 to 12 weeks in total seems to be the standard. I did not lose the hair on my head though it did thin slightly, I was warned to expect up to a 50lb weight loss, not good since I only weighed about 135lbs at the time, I only lost 15 during treatment but continued to lose another 5lbs after treatment ended. All in all I breezed through treatment, nausea on the very first morning for about 5 minutes bad enough to literally bring me to my knees! but I took the medication for it and never had any nausea again. The worst part was the tiredness which may have had more to do with the chemo-related insomnia! All in all I was lucky enough to have very little in the way of side effects during treatment - but continue to deal with long term side effects which are certainly not readily apparent to anyone but me.

    Hi conniegt--
    Your story is truly inspiring! We anal cancer survivors/warriors don't often hear from those who have beaten the disease as many years ago as you, so it's reassuring to know that people like you are out there! Thank you for telling us your story! I'm glad to hear you are doing well, despite a few long-term issues, which I think we can all expect to varying degrees. I am almost 3 1/2 years out from treatment and still have things I deal with on a regular basis. But like you, if I never told anyone, they would never know that I had had cancer. Thank you again for providing us with encouraging and uplifting details of your journey and I wish you continued good health!
  • Lorikat
    Lorikat Member Posts: 681 Member
    #11
    conniegt said:

    anal/perianal tumors
    Hi just saw your post and realized you would just be getting ready to start treatment. In a few weeks I will be a 9 year survivor of anal cancer. I had a large tumor that was situated in the perianal area and reached back to the vaginal wall as well as into the sphincter muscle. After surgery there was immediate relief in the sphincter area. There were several small growth tumors radiating from this that also affected the sphincter. Most of the largest tumor could be removed except for a portion (very small) into the vaginal wall. The other smaller ones were removed. I had this for quite some time and avoided doing anything about it because of the embarassment associated with the area...foolish move as it would have started as a benign mass early on, instead I found myself with stage 4 anal cancer at 46 years old. Oddly enough I was the calmest one around me about this. I refused a colostomy temp. or otherwise and choose to go with the standard treatment of radiation plus chemo. In my case I had radiation 5 days a week for 8 weeks and then a week of specialised radiation utilizing crystals directing the radition straight into the remains of the largest (and stubborn) tumor. I had a port so my 3 chemo treatment periods were 5 days each with constant a constant chemo drip. (I was also administered a large bag dose in the ward before each 5day period.) Some form of radiation plus chemo lasting 5 to 12 weeks in total seems to be the standard. I did not lose the hair on my head though it did thin slightly, I was warned to expect up to a 50lb weight loss, not good since I only weighed about 135lbs at the time, I only lost 15 during treatment but continued to lose another 5lbs after treatment ended. All in all I breezed through treatment, nausea on the very first morning for about 5 minutes bad enough to literally bring me to my knees! but I took the medication for it and never had any nausea again. The worst part was the tiredness which may have had more to do with the chemo-related insomnia! All in all I was lucky enough to have very little in the way of side effects during treatment - but continue to deal with long term side effects which are certainly not readily apparent to anyone but me.

    Conniegt...
    I also thank you for posting...it is wonderful to hear from long term survivors. I am going for my first post treatment checkup next week and feel really positive about the outcome. I would, if you do not mind, like to know what long term side effects you have. Makes things easier if you know the side effects are just that..side effects!! Thanks..
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #12
    mp327 said:

    Hi conniegt--
    Your story is truly inspiring! We anal cancer survivors/warriors don't often hear from those who have beaten the disease as many years ago as you, so it's reassuring to know that people like you are out there! Thank you for telling us your story! I'm glad to hear you are doing well, despite a few long-term issues, which I think we can all expect to varying degrees. I am almost 3 1/2 years out from treatment and still have things I deal with on a regular basis. But like you, if I never told anyone, they would never know that I had had cancer. Thank you again for providing us with encouraging and uplifting details of your journey and I wish you continued good health!

    Conniegt
    Thank you so much for your truly inspiring message.
  • duckyann
    duckyann Member Posts: 159
    #13
    Lorikat said:

    Conniegt...
    I also thank you for posting...it is wonderful to hear from long term survivors. I am going for my first post treatment checkup next week and feel really positive about the outcome. I would, if you do not mind, like to know what long term side effects you have. Makes things easier if you know the side effects are just that..side effects!! Thanks..

    Good Luck Lorikat

    I will be thinking and praying for a great first post treatment checkup for you. I am sure all will be well. Let us know.
  • gjjmcsb
    gjjmcsb Member Posts: 11
    #14
    duckyann said:

    Good Luck Lorikat

    I will be thinking and praying for a great first post treatment checkup for you. I am sure all will be well. Let us know.

    So here is where I am at
    So here is where I am at now. My doctor who I am not going to again did not recommend a biopsy! I was like um yes we will do a biopsy. He wanted me to come in yet again for another appointment so he could feel the tumor again. I said no, my next appointment needs to be a biopsy. He never would call me back! So I made an apointment with Dr. Schertzer instead for Friday and I am hoping that she will be able to do the biopsy next week hopefully. I will keep you all posted on what comes next. I am beginning to hate doctors. This is my 4th doctor and its getting ridiculous. Thank you all for your support and help. I am demanding a biopsy and the fact that the other doc won't order one yet is really upsetting to have to deal with. Thanks for everything!!!!
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #15
    gjjmcsb said:

    So here is where I am at
    So here is where I am at now. My doctor who I am not going to again did not recommend a biopsy! I was like um yes we will do a biopsy. He wanted me to come in yet again for another appointment so he could feel the tumor again. I said no, my next appointment needs to be a biopsy. He never would call me back! So I made an apointment with Dr. Schertzer instead for Friday and I am hoping that she will be able to do the biopsy next week hopefully. I will keep you all posted on what comes next. I am beginning to hate doctors. This is my 4th doctor and its getting ridiculous. Thank you all for your support and help. I am demanding a biopsy and the fact that the other doc won't order one yet is really upsetting to have to deal with. Thanks for everything!!!!

    What a battle
    It has been for you. Here's hoping that the biopsy will be done at this next appointment.
  • mp327
    mp327 Member Posts: 4,440 Member
    #16
    gjjmcsb said:

    So here is where I am at
    So here is where I am at now. My doctor who I am not going to again did not recommend a biopsy! I was like um yes we will do a biopsy. He wanted me to come in yet again for another appointment so he could feel the tumor again. I said no, my next appointment needs to be a biopsy. He never would call me back! So I made an apointment with Dr. Schertzer instead for Friday and I am hoping that she will be able to do the biopsy next week hopefully. I will keep you all posted on what comes next. I am beginning to hate doctors. This is my 4th doctor and its getting ridiculous. Thank you all for your support and help. I am demanding a biopsy and the fact that the other doc won't order one yet is really upsetting to have to deal with. Thanks for everything!!!!

    gjjmcsb--
    I'm glad you are going to see Dr. Schertzer and I hope she will not let you down. I am always hesitant to recommend a doctor to someone, but I have nothing but praise for her in my case. I do not understand why a doctor would not do a biopsy on an obvious lump that could be cancerous. Do not be surprised if Dr. Schertzer wants you to have a colonoscopy, which is when she would most likely do a biopsy. That's when she did mine. I hope you'll let us know how your appt. goes and I wish you the very best!

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