multiple recurrence after surgeries ?

qv62
qv62 Member Posts: 434 Member
edited November 2012 in Anal Cancer #1
not sure if I am having another recurrence, was diagnosed by the gastro doctor in 2009, thought I had a hemmoroid so I finally went to check it out, he immediatly reffered me to a colorectal surgeon to be seen that same day, the surgeon said it appeared to be anal cancer and concurred with the gastro that it was not a hem, I was scheduled for surgery the next week, unfortunatley he did not get clear margins so after healing and after a fissurectomy I was back in for removal of this anal tumor, needless to say it was an uncomfortable procedure and healing,had a recurrence in 2011 again another surgery without clear margins, then decided to leave LI and seek help in NYC, had another surgery early 2011 in NYC and thought this was my cure all, tummor was back by Oct 2011 had a biopsy and 2 part surgery, took out most of tumor, healed and went back in to take out rest and have plastic surgery, spent a week in the hospital and home for a few months with painful recovery, life finally getting back to normal, work etc, less accidents, in PT for pelvic floor strenghtining, on a 3 month visit, all seemed good, but now I have had a little blood spotting, a little itching, and discomfort, could it really be back ?
«13

Comments

  • z
    z Member Posts: 1,414 Member
    #2
    qv62
    Do you know why the standard protocal for anal cancer wasn't used. Chemo/radiation? Lori
  • sandysp
    sandysp Member Posts: 868 Member
    #3
    Why?
    That's a lot of surgeries. Why didn't they use the protocol is my question too?

    All the best,
    Sandy
  • qv62
    qv62 Member Posts: 434 Member
    #4
    sandysp said:

    Why?
    That's a lot of surgeries. Why didn't they use the protocol is my question too?

    All the best,
    Sandy

    not sure
    Hi Lori and Sandy, both doctors felt the surgery would be better than the side effects of treatment, the tumor was so close to the sphincter as well, I was able to avoid a colostomy though and thankful for that, however I am afraid what my next visit holds, I truly fear it is back
  • Marynb
    Marynb Member Posts: 1,118
    #5
    qv62 said:

    not sure
    Hi Lori and Sandy, both doctors felt the surgery would be better than the side effects of treatment, the tumor was so close to the sphincter as well, I was able to avoid a colostomy though and thankful for that, however I am afraid what my next visit holds, I truly fear it is back

    Qv62
    Sorry to hear of your recurrences, q. Are you in USA? Wondering why in the world they wouldn't have given you chemo and radiation after the surgery? Were there other health problems? Hang in there and keep the faith!
  • BC331
    BC331 Member Posts: 12
    #6
    Marynb said:

    Qv62
    Sorry to hear of your recurrences, q. Are you in USA? Wondering why in the world they wouldn't have given you chemo and radiation after the surgery? Were there other health problems? Hang in there and keep the faith!

    QV62
    So sorry to hear this. I would definitely get it checked out. Hopefully, all will be well. Keep us posted.
  • AZANNIE
    AZANNIE Member Posts: 445 Member
    #7
    qv62
    Sorry you've had to go through so much. Like the others have stated, I wonder why protocol wasn't followed? My tumor was near the sphincter and that's why I didn't have surgery - had chemo and radiation. Hoping for the best for you!

    Ann
  • qv62
    qv62 Member Posts: 434 Member
    #8
    AZANNIE said:

    qv62
    Sorry you've had to go through so much. Like the others have stated, I wonder why protocol wasn't followed? My tumor was near the sphincter and that's why I didn't have surgery - had chemo and radiation. Hoping for the best for you!

    Ann

    thank you all
    I appreciate your support, my visit is scheduled for 11/28, I am counting the days, being in NY I felt so confident that this last surgery was successful, I guess the extent of the last surgery and clear margins was the deterrent from treatment, in the event of treatment they did have me meet with the radioligist but based on results it was not recommended. I am agonizing each day wether or not it is back and my symptoms are real or wether I am letting my mind run away with me over thinking ? Has anyone seen a similar situation on the boards ?
  • Angela_K
    Angela_K Member Posts: 374 Member
    #9
    qv62 said:

    thank you all
    I appreciate your support, my visit is scheduled for 11/28, I am counting the days, being in NY I felt so confident that this last surgery was successful, I guess the extent of the last surgery and clear margins was the deterrent from treatment, in the event of treatment they did have me meet with the radioligist but based on results it was not recommended. I am agonizing each day wether or not it is back and my symptoms are real or wether I am letting my mind run away with me over thinking ? Has anyone seen a similar situation on the boards ?

    Try to relax
    I know it can be hard, but try to stay centered and confident. I would certainly question the process and even seek a second opinion from another oncologist with a wealth of experience in treating anal cancer. Remember, YOU are the customer. You must be your own best advocate and question everything. As survivors, we've all had times that we have 'over thought.' Knowing that you are in the best hands possible should bring some solace. Just make sure that you are.
  • Marynb
    Marynb Member Posts: 1,118
    #10
    qv62 said:

    thank you all
    I appreciate your support, my visit is scheduled for 11/28, I am counting the days, being in NY I felt so confident that this last surgery was successful, I guess the extent of the last surgery and clear margins was the deterrent from treatment, in the event of treatment they did have me meet with the radioligist but based on results it was not recommended. I am agonizing each day wether or not it is back and my symptoms are real or wether I am letting my mind run away with me over thinking ? Has anyone seen a similar situation on the boards ?

    Q
    I would surely get a second opinion at this point. I have not seen a similar situation on the boards. As far as I have read on the boards, radiation and chemo are standard treatment, even with surgery. Try to takr one day at a time right now and don't imagine the worse. I would line up another cancer center to get a seond opinion.

    Hugs.
  • qv62
    qv62 Member Posts: 434 Member
    #11
    Marynb said:

    Q
    I would surely get a second opinion at this point. I have not seen a similar situation on the boards. As far as I have read on the boards, radiation and chemo are standard treatment, even with surgery. Try to takr one day at a time right now and don't imagine the worse. I would line up another cancer center to get a seond opinion.

    Hugs.

    Thank you
    Thanks to all for the encouragement and support, it is wonderful to have a place to vent fears and concerns, I'm sure you have had the reactions from the people close to you that I am gettting which is "don't worry, I'm sure everything is fine" it is so frustrating that they don't quite understand what I am internalizing, I will be back for more hugs and kind words over the next few days, bless you all :)
  • qv62
    qv62 Member Posts: 434 Member
    #12
    qv62 said:

    Thank you
    Thanks to all for the encouragement and support, it is wonderful to have a place to vent fears and concerns, I'm sure you have had the reactions from the people close to you that I am gettting which is "don't worry, I'm sure everything is fine" it is so frustrating that they don't quite understand what I am internalizing, I will be back for more hugs and kind words over the next few days, bless you all :)

    more symptoms
    Hope you all had a Happy Thanksgiving, I am counting the days to my appointment which is 3 more days, have not slept well due to all that is weighing on my mind and now my symptoms seem to be increasing, this weekend I had quite a bit of bleeding compared to the spotting in the last few weeks, the discomfort and knife like feeling has also increased anyone have this with a recurrence ?
  • sephie
    sephie Member Posts: 650 Member
    #13
    qv62 said:

    more symptoms
    Hope you all had a Happy Thanksgiving, I am counting the days to my appointment which is 3 more days, have not slept well due to all that is weighing on my mind and now my symptoms seem to be increasing, this weekend I had quite a bit of bleeding compared to the spotting in the last few weeks, the discomfort and knife like feeling has also increased anyone have this with a recurrence ?

    might help
    I am 3 years 4 months post... MD Anderson says no reoccurence... BUT i have bleeding and knife like pain with almost all of my bm's.( they are soft) .. they say radiation permanent damage but it does scare the heck out of me. sephie
  • 7243
    7243 Member Posts: 249 Member
    #14
    qv62 said:

    more symptoms
    Hope you all had a Happy Thanksgiving, I am counting the days to my appointment which is 3 more days, have not slept well due to all that is weighing on my mind and now my symptoms seem to be increasing, this weekend I had quite a bit of bleeding compared to the spotting in the last few weeks, the discomfort and knife like feeling has also increased anyone have this with a recurrence ?

    Support
    Ok .... Hang in there. I can imagine you're very anxious. I reread the string here and want to send a supportive note to help you stay grounded for the next couple days before your appointment. Take a few deep breaths and try to focus a bit. I had very similar symptoms after my treatment ... I felt certain it was something bad, but all was well. Perhaps a soak in a warm tub, pain meds like Tylenol or Motrin to relieve your pain, and some nice holiday music. Focus on you inner strength ... You are strong I'm certain of that because you've been through quite a bit and are going strong. Gather your inner power and repeatedly affirm positive thinking and reject negative thoughts.

    Maybe download some positive affirmations or guided imagery to you iPhone or other device to listen to. Bellruth Naperstek's guided imagery stuff saved my sanity .... Healthjourneys.com check it out!

    I'm thinking about you right now and sending positive energy! Keep us posted! Xoxo
  • qv62
    qv62 Member Posts: 434 Member
    #15
    7243 said:

    Support
    Ok .... Hang in there. I can imagine you're very anxious. I reread the string here and want to send a supportive note to help you stay grounded for the next couple days before your appointment. Take a few deep breaths and try to focus a bit. I had very similar symptoms after my treatment ... I felt certain it was something bad, but all was well. Perhaps a soak in a warm tub, pain meds like Tylenol or Motrin to relieve your pain, and some nice holiday music. Focus on you inner strength ... You are strong I'm certain of that because you've been through quite a bit and are going strong. Gather your inner power and repeatedly affirm positive thinking and reject negative thoughts.

    Maybe download some positive affirmations or guided imagery to you iPhone or other device to listen to. Bellruth Naperstek's guided imagery stuff saved my sanity .... Healthjourneys.com check it out!

    I'm thinking about you right now and sending positive energy! Keep us posted! Xoxo

    thank you
    Thanks again for the positive energy and encouragement, 7243 I will check the site for positive affirmations and guided imagery, as well as trying to reject negative images, your note was just what I needed today and worded so well, I feel as if you really understand that yes I am strong but right now am not grounded, another sleepless night last night and I am exhausted, Sephie, I am sorry you still have these issues as well, I will think good things for you as well, I see I am not alone and appreciate eveyone taking the time to respond
  • Marynb
    Marynb Member Posts: 1,118
    #16
    qv62 said:

    thank you
    Thanks again for the positive energy and encouragement, 7243 I will check the site for positive affirmations and guided imagery, as well as trying to reject negative images, your note was just what I needed today and worded so well, I feel as if you really understand that yes I am strong but right now am not grounded, another sleepless night last night and I am exhausted, Sephie, I am sorry you still have these issues as well, I will think good things for you as well, I see I am not alone and appreciate eveyone taking the time to respond

    Q

    I do know your fears. I am hoping for the best for you. I have had knife like pains and some bleeding since my treatments a little more than a year ago. The doctors told me it was normal. You are in my prayers.

    Hugs.

    Mary
  • qv62
    qv62 Member Posts: 434 Member
    #17
    Marynb said:

    Q

    I do know your fears. I am hoping for the best for you. I have had knife like pains and some bleeding since my treatments a little more than a year ago. The doctors told me it was normal. You are in my prayers.

    Hugs.

    Mary

    thanks Marynb
    I am welcoming the hugs :) I am sorry for your discomforts and hope they are minimal
  • 7243
    7243 Member Posts: 249 Member
    #18
    qv62 said:

    thank you
    Thanks again for the positive energy and encouragement, 7243 I will check the site for positive affirmations and guided imagery, as well as trying to reject negative images, your note was just what I needed today and worded so well, I feel as if you really understand that yes I am strong but right now am not grounded, another sleepless night last night and I am exhausted, Sephie, I am sorry you still have these issues as well, I will think good things for you as well, I see I am not alone and appreciate eveyone taking the time to respond

    Sleep
    You're welcome ... I want to encourage u too consider a sleep aide such as ambien to get rest! It is likely you will not need it long term, but may need it to get you through this difficult time. Your heart, soul, and body require rest to be able to get through all of this! Not to mention sleeplessness can rake a toll on your immune system! Perhaps your physician could provide a prescription and some guidance for you.

    I didn't want to use ambien or other drugs for anxiety, such as Xanax, however an onco-psychologist I saw stated it this way, "these are temporary tools to help through the toughest points of diagnosis and treatment" ... Part of a care plan. I needed and used them judiciously and tapered and discontinued use over time. I used guided imagery to get to sleep and took ambien when I woke up in the night (as long as i had at least 5 good hours of rest time available) to get back to sleep. All that said ... A discussion with your care-provider will give you the best medical advice regarding sleep aides.

    I do recall sleepless nights filled with fear ... You are NOT alone. Keep us posted.

    Xoxo. Peace!
  • qv62
    qv62 Member Posts: 434 Member
    #19
    7243 said:

    Sleep
    You're welcome ... I want to encourage u too consider a sleep aide such as ambien to get rest! It is likely you will not need it long term, but may need it to get you through this difficult time. Your heart, soul, and body require rest to be able to get through all of this! Not to mention sleeplessness can rake a toll on your immune system! Perhaps your physician could provide a prescription and some guidance for you.

    I didn't want to use ambien or other drugs for anxiety, such as Xanax, however an onco-psychologist I saw stated it this way, "these are temporary tools to help through the toughest points of diagnosis and treatment" ... Part of a care plan. I needed and used them judiciously and tapered and discontinued use over time. I used guided imagery to get to sleep and took ambien when I woke up in the night (as long as i had at least 5 good hours of rest time available) to get back to sleep. All that said ... A discussion with your care-provider will give you the best medical advice regarding sleep aides.

    I do recall sleepless nights filled with fear ... You are NOT alone. Keep us posted.

    Xoxo. Peace!

    Thanks 7243
    Great advice, I have been taking some tylenol pm but I have a very high tolerence to meds so I may as well be popping 2 m&ms lol, if the news I get tomorrow is unsettling I will certainly ask for a script, it is funny how when you get so wrapped up in your own thouhgts it gets hard to think outside the box, your advice is greatly appreciated, it is probably the advice I would have given someone but right now not thinking too clearly. I am going out to dinner tonight with a good friend and a few glasses of wine to celebrate my 50th, I will forfiet my tylenol pms tonight :)
  • 7243
    7243 Member Posts: 249 Member
    #20
    qv62 said:

    Thanks 7243
    Great advice, I have been taking some tylenol pm but I have a very high tolerence to meds so I may as well be popping 2 m&ms lol, if the news I get tomorrow is unsettling I will certainly ask for a script, it is funny how when you get so wrapped up in your own thouhgts it gets hard to think outside the box, your advice is greatly appreciated, it is probably the advice I would have given someone but right now not thinking too clearly. I am going out to dinner tonight with a good friend and a few glasses of wine to celebrate my 50th, I will forfiet my tylenol pms tonight :)

    Have fun!!!
    Wishing you FUN tonight! Hang in there ... Agree it is easier to give suggestions to others and just miss it ourselves totally!

    FUN is the mission tonight!.... Keep us posted when you can!

    Xoxo
  • horsepad
    horsepad Member Posts: 146 Member
    #21
    7243 said:

    Sleep
    You're welcome ... I want to encourage u too consider a sleep aide such as ambien to get rest! It is likely you will not need it long term, but may need it to get you through this difficult time. Your heart, soul, and body require rest to be able to get through all of this! Not to mention sleeplessness can rake a toll on your immune system! Perhaps your physician could provide a prescription and some guidance for you.

    I didn't want to use ambien or other drugs for anxiety, such as Xanax, however an onco-psychologist I saw stated it this way, "these are temporary tools to help through the toughest points of diagnosis and treatment" ... Part of a care plan. I needed and used them judiciously and tapered and discontinued use over time. I used guided imagery to get to sleep and took ambien when I woke up in the night (as long as i had at least 5 good hours of rest time available) to get back to sleep. All that said ... A discussion with your care-provider will give you the best medical advice regarding sleep aides.

    I do recall sleepless nights filled with fear ... You are NOT alone. Keep us posted.

    Xoxo. Peace!

    Ambien side effects
    I wouldn't recommend ambien to anyone. My husband, an employee's mother, my doctor's brother in law all died as a result of ambien. Please research the side effects, and suicide while under the influence of ambien. In my opinion, Ambien should be taken off the market.

Discussion Boards