How long did your pain last after treatment was over?

dharma19
dharma19 Member Posts: 16
edited March 2014 in Anal Cancer #1
Hi everyone. I am done my chemo and radiation and did pretty well throughout both, despite an infection and some serious skin irritation. The week I was done my treatment, the doc pulled my Fentanyl patch from 100 to 25 mcgs and stopped the oral pain pills. I don't know if this is the reason I am feeling so much more uncomfortable or if it takes longer to heal OR if it means the cancer is still there. The doctor has been terrible--he is in two days a week and the nurse told me that he should not have lowered my patch so fast, and that he should have titrated down. The pharmacist confirmed. I am really angry at him now because I am terribly uncomfortable. I am wondering how one knows how long the bad pain should continue. Even getting others experiences would help. I have googled this but can't find anything. There are so few cases of this. I will be willing to share my experiences also. I don't mean to sound like a whiner--I just can't believe I got through treatment only to find that the discomfort was still there but the doc seemed to disengage. It was like he couldn't wait to pass me off to the next doctor and dx his role. Honestly, I was a good patient. I feel abandoned, hurt and totally hopeless about this pain. I never thought I would be writing sonething like this after treatment. Oh, and I have had three UTI infections, a staph infection, and a vaginitis, so maybe that is part of what is going on. Comments? Thanks again everyone.

Comments

  • pjjenkins
    pjjenkins Member Posts: 173
    #2
    Talk with your primary care
    Maybe he/she can help. You definitely should not have to put up with a lot of pain. It is inexcusable.

    And see another oncologist. I feel angry for you. I did find the nurses very helpful and readier to listen than docs. But often the docs listen to the nurses, too.

    I suspect the infections are bad luck though many of us experience some. I had a couple bouts of cellulitis and other minor skin infections, also. Be sure you complete any anti-biotic regimen you are given.

    I still, two years later, find baths very soothing to nerves and skin but pain is very minor and largely due to an ongoing hemorrhoid... just is the way all this started so it is upsetting but I just finished annual testing and examinations by two specialists and they agree that there is no evidence of disease - cancer. Just irritable skin post radiation and hemorrhoids.
  • z
    z Member Posts: 1,414 Member
    #3
    dhrama
    Hi dharma,

    Sorry you have to be here. I was prescribed pain pills from the 3rd week of radiation that lasted until about a month after tx was over. I would take 4 a day, whereas, I was allowed up to 12 a day. After I completed the rx I didn't have it renewed for the pain was tolerable. I did use a water bottle while using the bathroom as that helped a lot. I also used silverdine initially for a couple of weeks. Fentanyl is a very powerful pain med, so your dr prescribing that knew that you were in bad pain due to complications to your skin. After you come off a pain med, it can also cause emotional depression, and I agree they should have weened you off slower. Although the healing begins to start really quickly, it was about 2 months before I could feel the pain from bms subsiding. Until your dr has this kind of tx, he will never understand the pain, of course I don't wish this on anyone. I hope that you will be able to tolerate the pain better. Have you been prescribed any silverdine for burns? The baths also help. I wish you well. Lori
  • dharma19
    dharma19 Member Posts: 16
    #4
    z said:

    dhrama
    Hi dharma,

    Sorry you have to be here. I was prescribed pain pills from the 3rd week of radiation that lasted until about a month after tx was over. I would take 4 a day, whereas, I was allowed up to 12 a day. After I completed the rx I didn't have it renewed for the pain was tolerable. I did use a water bottle while using the bathroom as that helped a lot. I also used silverdine initially for a couple of weeks. Fentanyl is a very powerful pain med, so your dr prescribing that knew that you were in bad pain due to complications to your skin. After you come off a pain med, it can also cause emotional depression, and I agree they should have weened you off slower. Although the healing begins to start really quickly, it was about 2 months before I could feel the pain from bms subsiding. Until your dr has this kind of tx, he will never understand the pain, of course I don't wish this on anyone. I hope that you will be able to tolerate the pain better. Have you been prescribed any silverdine for burns? The baths also help. I wish you well. Lori

    Thanks for responding
    Hi folks,

    I was so happy to wake up and see two posts with people trying to help me. I appreciate it so much. My doc has not explained anything. Has anyone else gotten bounced between your radiation oncologist and medical oncologist? They are in two different offices here in New England and they both keep telling me to go to the other for pain. They make me feel like a crack addict. I feel that I have to beg for any pain relief. I never thought that cancer patients would have this issue, and even my pharmacist is stunned. It is amazing how much more bearable it is to live through this with proper medication than without. I hope some docs read this. And, you are right, I do not think docs will ever understand the pain of this cancer. There are too few people with it. I also think that our cancer is in an area that effects the bladder, rectum and for women, vagina and all other female parts. That is a lot of working parts to get inflammed and irritated. I also was surprised at how emotional I got. I never cry and I started crying when I was in such bad pain. My oncologist sent me to the ER for pain and the ER said they don't deal with chronic pain conditions such as cancer, so I was in there for seven hours and had nothing for pain. I was not even allowed to take my own pain medicine. The oncologists office said that the ER would handle the pain. Thank you for being angry for me. I am very angry after that experience. For the first time in my life, I understood why people opt for assisted suicide after going through that. Your responses help me to feel as though some one cares. It means so much right now. Thank you. God bless, and may your kindness be returned ten fold!
  • mp327
    mp327 Member Posts: 4,440 Member
    #5
    dharma19 said:

    Thanks for responding
    Hi folks,

    I was so happy to wake up and see two posts with people trying to help me. I appreciate it so much. My doc has not explained anything. Has anyone else gotten bounced between your radiation oncologist and medical oncologist? They are in two different offices here in New England and they both keep telling me to go to the other for pain. They make me feel like a crack addict. I feel that I have to beg for any pain relief. I never thought that cancer patients would have this issue, and even my pharmacist is stunned. It is amazing how much more bearable it is to live through this with proper medication than without. I hope some docs read this. And, you are right, I do not think docs will ever understand the pain of this cancer. There are too few people with it. I also think that our cancer is in an area that effects the bladder, rectum and for women, vagina and all other female parts. That is a lot of working parts to get inflammed and irritated. I also was surprised at how emotional I got. I never cry and I started crying when I was in such bad pain. My oncologist sent me to the ER for pain and the ER said they don't deal with chronic pain conditions such as cancer, so I was in there for seven hours and had nothing for pain. I was not even allowed to take my own pain medicine. The oncologists office said that the ER would handle the pain. Thank you for being angry for me. I am very angry after that experience. For the first time in my life, I understood why people opt for assisted suicide after going through that. Your responses help me to feel as though some one cares. It means so much right now. Thank you. God bless, and may your kindness be returned ten fold!

    dharma19
    I can assure you that if your doctors had to go through this pain, they would give you whatever you needed to ease your pain. But they have no idea how terrible it is. I'm not the type of person that usually gets in someone's face, but perhaps this is the approach that you need to take with them. The fact that you have two doctors, neither of which is willing to address your pain issues, is just absurd. My rad onc told me on my last day of treatment that it would be at least 3 weeks before I would have noticeable improvement in my pain. But lucky for me, I felt much better within 10 days. I'm sorry that this isn't the case for you. Do you have a primary care doctor who can either prescribe something for your pain or contact one of these two docs and get something done? You should not have to suffer this pain. My heart goes out to you and I hope you will get someone's attention. Take care and may God bless.

    Martha
  • dharma19
    dharma19 Member Posts: 16
    #6
    mp327 said:

    dharma19
    I can assure you that if your doctors had to go through this pain, they would give you whatever you needed to ease your pain. But they have no idea how terrible it is. I'm not the type of person that usually gets in someone's face, but perhaps this is the approach that you need to take with them. The fact that you have two doctors, neither of which is willing to address your pain issues, is just absurd. My rad onc told me on my last day of treatment that it would be at least 3 weeks before I would have noticeable improvement in my pain. But lucky for me, I felt much better within 10 days. I'm sorry that this isn't the case for you. Do you have a primary care doctor who can either prescribe something for your pain or contact one of these two docs and get something done? You should not have to suffer this pain. My heart goes out to you and I hope you will get someone's attention. Take care and may God bless.

    Martha

    Pain
    Hey Martha,

    Thanks for the post. I am up because I am in excruciating pain. I am going to get in their face tomorrow. The fact that I have been like this for four days, and the fact that my oncologist sent me to the ER for pain (when the ER said they don't manage cancer pain) has me on the warpath. I have no addiction history, no history of whining for drugs. I wonder if thhis has to do with the fact that I had some lawyers look at my records to look at the possibility of suing? I decided that I would be happy to just live and even though they completely failed to diagnose my cancer when it would have been a stage one not 3B, I decided that I would be happy to just live. It seems that the day that I asked for those records things changed. It was the same hospital that messed up. They started asking questions after that, too. I just can't think of any other reason for them to go from a quite comfortable and reasonable pain regimen, to being brutal. Sounds crazy, right? I do think that was the day that their attitudes changed. I did tell them I wasn't suing the hospital, but they didn't believe me. Maybe I am off base, but that was the day that they turned almost adversarial. I told the lawyer to wait until I was done treatment and that is when they asked for the records. Pretty coincidental, huh? No one could be that petty, could they?

    Anyway, thank you for your thoughts, Martha. Thank you everybody. I thank God for this site and for you guys.
  • z
    z Member Posts: 1,414 Member
    #7
    dharma19 said:

    Pain
    Hey Martha,

    Thanks for the post. I am up because I am in excruciating pain. I am going to get in their face tomorrow. The fact that I have been like this for four days, and the fact that my oncologist sent me to the ER for pain (when the ER said they don't manage cancer pain) has me on the warpath. I have no addiction history, no history of whining for drugs. I wonder if thhis has to do with the fact that I had some lawyers look at my records to look at the possibility of suing? I decided that I would be happy to just live and even though they completely failed to diagnose my cancer when it would have been a stage one not 3B, I decided that I would be happy to just live. It seems that the day that I asked for those records things changed. It was the same hospital that messed up. They started asking questions after that, too. I just can't think of any other reason for them to go from a quite comfortable and reasonable pain regimen, to being brutal. Sounds crazy, right? I do think that was the day that their attitudes changed. I did tell them I wasn't suing the hospital, but they didn't believe me. Maybe I am off base, but that was the day that they turned almost adversarial. I told the lawyer to wait until I was done treatment and that is when they asked for the records. Pretty coincidental, huh? No one could be that petty, could they?

    Anyway, thank you for your thoughts, Martha. Thank you everybody. I thank God for this site and for you guys.

    dhrama
    Hi dhrama,

    I pray that you'll get what pain medication you need. Very interesting that after your lawyer pulled your records, your rx for pain was different. The drs oath is first do no harm. Your emotional well being is just as important as your physical. It will help you heal faster if you are not in so much pain. Let us know what happens. Lori
  • cbs6931
    cbs6931 Member Posts: 63
    #8
    dharma19 said:

    Pain
    Hey Martha,

    Thanks for the post. I am up because I am in excruciating pain. I am going to get in their face tomorrow. The fact that I have been like this for four days, and the fact that my oncologist sent me to the ER for pain (when the ER said they don't manage cancer pain) has me on the warpath. I have no addiction history, no history of whining for drugs. I wonder if thhis has to do with the fact that I had some lawyers look at my records to look at the possibility of suing? I decided that I would be happy to just live and even though they completely failed to diagnose my cancer when it would have been a stage one not 3B, I decided that I would be happy to just live. It seems that the day that I asked for those records things changed. It was the same hospital that messed up. They started asking questions after that, too. I just can't think of any other reason for them to go from a quite comfortable and reasonable pain regimen, to being brutal. Sounds crazy, right? I do think that was the day that their attitudes changed. I did tell them I wasn't suing the hospital, but they didn't believe me. Maybe I am off base, but that was the day that they turned almost adversarial. I told the lawyer to wait until I was done treatment and that is when they asked for the records. Pretty coincidental, huh? No one could be that petty, could they?

    Anyway, thank you for your thoughts, Martha. Thank you everybody. I thank God for this site and for you guys.

    Hang in there!
    So sorry to hear of the problems your are having - totally ridiculous. Hang in there, good thing you are persistent. They should have no problem giving you pain medication unless they are masochists instead of physicians. (Don't let them bounce you back and forth - if they try that again have the Dr you are seeing get the other one on the line while you are in the office and sit there while they hash it out. (My rad onc has called the onc twice while I was at the office with him (his idea I never had to ask).)Let us know how you are doing and know that you are in my thoughts and prayers.

    Cathy
  • dharma19
    dharma19 Member Posts: 16
    #9
    cbs6931 said:

    Hang in there!
    So sorry to hear of the problems your are having - totally ridiculous. Hang in there, good thing you are persistent. They should have no problem giving you pain medication unless they are masochists instead of physicians. (Don't let them bounce you back and forth - if they try that again have the Dr you are seeing get the other one on the line while you are in the office and sit there while they hash it out. (My rad onc has called the onc twice while I was at the office with him (his idea I never had to ask).)Let us know how you are doing and know that you are in my thoughts and prayers.

    Cathy

    Good news and a referral
    Hi Cathy and Lori and everyone!

    I was sitting here trying to come up with a game plan to deal with the pain issue when my doctor's nurse called out of the blue. He actually increased my patch (or shall I say put me back on 50 Fentanyl and gave me some pills for breakthrough). This was the medical oncologist not associated with the hospital where records were pulled.

    Then they gave me a referral to a urologist. I have to figure out if this pain is what we all dread (spreading to there, of course) or something else. I am relieved to get the referral for Wed AM but scared to death. At least I will know, right?

    Thanks for all your help. The one thing I learned from you guys is to advocate for my own needs. It worked today so I am really encouraged! Hopefully Memorial Day will be tolerable. In fact, it WILL be now. I hope you all are going to have a nice holiday. I will say the difference between being in pain and being comfortable is the difference between having a tolerable life and not. I never thought I would put things in those terms. Thanks again!
  • mp327
    mp327 Member Posts: 4,440 Member
    #10
    dharma19 said:

    Good news and a referral
    Hi Cathy and Lori and everyone!

    I was sitting here trying to come up with a game plan to deal with the pain issue when my doctor's nurse called out of the blue. He actually increased my patch (or shall I say put me back on 50 Fentanyl and gave me some pills for breakthrough). This was the medical oncologist not associated with the hospital where records were pulled.

    Then they gave me a referral to a urologist. I have to figure out if this pain is what we all dread (spreading to there, of course) or something else. I am relieved to get the referral for Wed AM but scared to death. At least I will know, right?

    Thanks for all your help. The one thing I learned from you guys is to advocate for my own needs. It worked today so I am really encouraged! Hopefully Memorial Day will be tolerable. In fact, it WILL be now. I hope you all are going to have a nice holiday. I will say the difference between being in pain and being comfortable is the difference between having a tolerable life and not. I never thought I would put things in those terms. Thanks again!

    Hi Dharma19!
    I'm glad one of your docs finally came through for you and addressed your pain issues. I hope the medication will help you. I find it very ironic that all of this bad treatment began after the request for records. I wish you the best and hope you'll keep us posted on how you are doing.

    Martha
  • z
    z Member Posts: 1,414 Member
    #11
    dharma19 said:

    Good news and a referral
    Hi Cathy and Lori and everyone!

    I was sitting here trying to come up with a game plan to deal with the pain issue when my doctor's nurse called out of the blue. He actually increased my patch (or shall I say put me back on 50 Fentanyl and gave me some pills for breakthrough). This was the medical oncologist not associated with the hospital where records were pulled.

    Then they gave me a referral to a urologist. I have to figure out if this pain is what we all dread (spreading to there, of course) or something else. I am relieved to get the referral for Wed AM but scared to death. At least I will know, right?

    Thanks for all your help. The one thing I learned from you guys is to advocate for my own needs. It worked today so I am really encouraged! Hopefully Memorial Day will be tolerable. In fact, it WILL be now. I hope you all are going to have a nice holiday. I will say the difference between being in pain and being comfortable is the difference between having a tolerable life and not. I never thought I would put things in those terms. Thanks again!

    dharma
    Hi Dharma,

    I'm so glad you were able to get results by being your own advocate. Hopefully, the urologist will tell you its just a uti (urinary tract infection), I know I've heard of other anal cancer patients getting those, and they are very painful. I hope you have a great memorial weekend since now your pain will be controlled. I know its hard to function or even think when your in a severe amount of pain. I wish you well. Lori
  • pjjenkins
    pjjenkins Member Posts: 173
    #12
    dharma19 said:

    Good news and a referral
    Hi Cathy and Lori and everyone!

    I was sitting here trying to come up with a game plan to deal with the pain issue when my doctor's nurse called out of the blue. He actually increased my patch (or shall I say put me back on 50 Fentanyl and gave me some pills for breakthrough). This was the medical oncologist not associated with the hospital where records were pulled.

    Then they gave me a referral to a urologist. I have to figure out if this pain is what we all dread (spreading to there, of course) or something else. I am relieved to get the referral for Wed AM but scared to death. At least I will know, right?

    Thanks for all your help. The one thing I learned from you guys is to advocate for my own needs. It worked today so I am really encouraged! Hopefully Memorial Day will be tolerable. In fact, it WILL be now. I hope you all are going to have a nice holiday. I will say the difference between being in pain and being comfortable is the difference between having a tolerable life and not. I never thought I would put things in those terms. Thanks again!

    Good news indeed
    So glad you will not suffer the pain now..... pain does rob you of an awful lot- energy, good spirits, will, etc.

    Good luck with the referrals... Worry is part of this game and waiting is too but when you are at least moving forward, they can be tolerated. I am very glad you have advocated for yourself! Keep it up!

    Priscilla

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