having a big scare

don09
don09 Member Posts: 108
in Anal Cancer #1

I am not sure what to think or what to do so I'm posting in hopes of finding someone here who's cancer journey has been somewhat similiar not only in the emotional aspects of the disease but also the physical.  When first dx. I was 111b with lymph node involment, my Dr. told me that if the treatment was not sucessful I would be facing a major surgery ending with a colostomy. It turned out my treatment did work. I am 1Yr. out from treatment. Part of my follow up care was a ct-scan which included chest, abdomin, pelvic which took place Monday. We heard this morning from the drs. office that the Dr. wanted me to come into the office to discuss the findings from the scan. Previous scan results were over the phone, I know emotionally I am going to bad place in my mind as I am of course thinking the worst not just the idea of a surgery I dont want, but perhaps something worse.  I havent shared my emotional concerns with my husband as he is not the most patient man and his emotional state is worse than mine. His way of copeing is to bury himself in his work which in turn leaves me feeling abandoned and angry. I feel I have gone through so much in the past 8 Yrs. with the various cancers (lung cancer, two surgeries, and now anal) I find myself wondering where is my support? Other than this site, he is the only family I have.

In all reality I think the worst part of this disease is what it can do to our mental state, especially when we dont know what were up against.  It is hard to not push the panic button. All in all I am just a mess. Please help.

Comments

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited January 2018 #2
    don09...

    I am so sorry that this has left you with undue worry. I was initially dx with anal cancer stage 3b almost 7 yrs ago now. One year later breast cancer and 3 years ago anal cancer mets to my lung.  I have had surgery, chemo and radiation as well as daily meds. I also have an ostomy as part of my initial anal cancer treatment. So, YES I whole heartedly agree that while a scan may reveal no evidence of disease in our body, what it does to us mentally and emotionally will never result in NED. 

    For the record, I have had more than my fair share of scans, yet never given results over the phone. I have always gone in person (after several days of scanxiety) sat nervously in the waiting room, and met with my doctor to discuss the situation. I have always tried to prepare for whatever he had to say, sometimes taking some notes of questions to ask in case I forget. 

    I try to remind myself that worry will not change the outcome and will only serve to make my managing of it more difficult. Believe that you will get good news, and if some potential issue needs to be addressed, you WILL be able to deal with it. My faith is strong, and I remind myself that too much worry can almost seem sinful in that if we are focused on the "what if's" in a negative way, we are not trusting that God knows exactly what he is doing...and I'm not about to question His motives at this stage of the game. I do have family support, but my husband has his own health issues that truly seem to consume most of his thoughts these days, yet I know inside hes there for me if I need him. Maybe your husband just feels helpless and he needs to be clearly told he is needed. (Sorry, if I'm wrong, I don't know him, but sometimes people just don't know what to do)

    Today I am feeling great, even after being through some rough years myself...tomorrow could be different I know. I will pray the same for you. Please know that you are not alone, and that we are here for you to walk through whatever path you're on. Keep us posted as you get those results!

    katheryn

  • don09
    don09 Member Posts: 108
    edited January 2018 #3
    eihtak said:

    don09...

    I am so sorry that this has left you with undue worry. I was initially dx with anal cancer stage 3b almost 7 yrs ago now. One year later breast cancer and 3 years ago anal cancer mets to my lung.  I have had surgery, chemo and radiation as well as daily meds. I also have an ostomy as part of my initial anal cancer treatment. So, YES I whole heartedly agree that while a scan may reveal no evidence of disease in our body, what it does to us mentally and emotionally will never result in NED. 

    For the record, I have had more than my fair share of scans, yet never given results over the phone. I have always gone in person (after several days of scanxiety) sat nervously in the waiting room, and met with my doctor to discuss the situation. I have always tried to prepare for whatever he had to say, sometimes taking some notes of questions to ask in case I forget. 

    I try to remind myself that worry will not change the outcome and will only serve to make my managing of it more difficult. Believe that you will get good news, and if some potential issue needs to be addressed, you WILL be able to deal with it. My faith is strong, and I remind myself that too much worry can almost seem sinful in that if we are focused on the "what if's" in a negative way, we are not trusting that God knows exactly what he is doing...and I'm not about to question His motives at this stage of the game. I do have family support, but my husband has his own health issues that truly seem to consume most of his thoughts these days, yet I know inside hes there for me if I need him. Maybe your husband just feels helpless and he needs to be clearly told he is needed. (Sorry, if I'm wrong, I don't know him, but sometimes people just don't know what to do)

    Today I am feeling great, even after being through some rough years myself...tomorrow could be different I know. I will pray the same for you. Please know that you are not alone, and that we are here for you to walk through whatever path you're on. Keep us posted as you get those results!

    katheryn

    HI Katheryn

     Thank you for responding, Thank you for your words of faith, I too believe that God knows exactly what He's doing. I should know better than this, I learned that through lung cancer (111a) 8 Yrs. ago, inoperative, and statisticaly shouldnt be here, I trusted Him then and it shouldnt be any different today. I think that is something we believers all need to be reminded of in times of uncertainty and I thank you again for that.

    I think you are right in regard to my husband, he just doesn't know what to do, or say that would help ease my concerns it's more of having good intensions but afraid of them not being percieved that way I guess. I am glad you are doing well, I am familiar with your journey and I feel you are more than an inspiration to me and I'm sure to all who are here as well. Thank you for the prayers and I will keep you posted on how things go after seeing my Dr.

  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    don09

    I'm sorry the phone call from your doctor's office has made you anxious, but that's understandable.  I hope you were able to schedule an appointment in the next few days so that you won't be in worry mode for long.  I am sorry that you get little or no support, other than online.  All of us here come for the support and also to give support--we are here for you.  Please know that you will be in my thoughts and prayers.  I hope your doctor will be giving you good news and your anxiety will vanish.  Please keep us posted.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited January 2018 #5
    Don09

    Im sorry you have been worried and I very much hope you don't get any bad news. I sure hope you don't have to worry through the weekend. Do you have your appt tomorrow or Friday I hope? After cancer even if I think it's far from my thoughts it's probably closer than I think. I was just looking at this red spot near my port scar tonight, felt a bump and saw the red spot and thought to myself "well it's either a zit or maybe some kind of weird metastisis from the cancer". It's like an awareness it can always come back. You will be in my thoughts and prayers; please let us know what happens. 

  • pializ
    pializ Member Posts: 508 Member
    #6
    Don09

    the waiting, the imagination.......that's the worst! Knowing is difficult, but somewhat easier. I hope you have your appointment sooner rather than later so that this stage is done.

    A few years ago during a check up with my oncologist, she was 70% sure it had returned but I had to wait 6 weeks to know that at that point it hadn't (MRI, ct and eua took that long) & then I was visibly anxious at my next appointment with her which puzzled her. She had no idea of the emotional strain during that time! 

    Best wishes and keep us informed. You are in my thoughts

  • don09
    don09 Member Posts: 108
    edited January 2018 #7
    mp327 said:

    don09

    I'm sorry the phone call from your doctor's office has made you anxious, but that's understandable.  I hope you were able to schedule an appointment in the next few days so that you won't be in worry mode for long.  I am sorry that you get little or no support, other than online.  All of us here come for the support and also to give support--we are here for you.  Please know that you will be in my thoughts and prayers.  I hope your doctor will be giving you good news and your anxiety will vanish.  Please keep us posted.

    Thank you mp327

    for the support, it is especially comforting to me to know that whenever the weight becomes too heavy I can always come here and know that you all understand better than anyone because you all have experienced the many emotions of cancer. I see my Dr. tomorrow to learn the findings from the scan, I can only hope for the best, believe everything will be fine, and have faith that God will see me through.  I will keep all of you posted, thank you for your kind words of encouragement. I always feel so much better after reading the many replys of inspiration, courage, and love we all so freely give to oneanother.

  • don09
    don09 Member Posts: 108
    #8
    Mollymaude said:

    Don09

    Im sorry you have been worried and I very much hope you don't get any bad news. I sure hope you don't have to worry through the weekend. Do you have your appt tomorrow or Friday I hope? After cancer even if I think it's far from my thoughts it's probably closer than I think. I was just looking at this red spot near my port scar tonight, felt a bump and saw the red spot and thought to myself "well it's either a zit or maybe some kind of weird metastisis from the cancer". It's like an awareness it can always come back. You will be in my thoughts and prayers; please let us know what happens. 

    Mollymaude, my Appt, to see

    Mollymaude, my Appt, to see my Dr. is tomorrow at the end of the day. I sure hope its not bad news either, Although I am nervious and the not knowing can drive ones mind to some pretty dark places worrying, but I'm deciding to put it back into Gods hands, which I find is easier said than done during times of uncertainty such as this. 

    I had a port for this cancer, it's been removed for some time now but I too have the same bump you mention, i'm pretty sure it is scar tissue, but as for the red spot I would have your Dr. check that out to make sure there is no infection going on just to play it safe, but I will hope with you that it is nothing more than a zit. Thank you for including me in your prayers, and I will do the same for you as well. 

  • don09
    don09 Member Posts: 108
    edited January 2018 #9
    pializ said:

    Don09

    the waiting, the imagination.......that's the worst! Knowing is difficult, but somewhat easier. I hope you have your appointment sooner rather than later so that this stage is done.

    A few years ago during a check up with my oncologist, she was 70% sure it had returned but I had to wait 6 weeks to know that at that point it hadn't (MRI, ct and eua took that long) & then I was visibly anxious at my next appointment with her which puzzled her. She had no idea of the emotional strain during that time! 

    Best wishes and keep us informed. You are in my thoughts

    Hi pializ

    Thank you for responding to my post. As much as I dislike the waiting to know about my scan results, I have come to realize that, its just the way it is. I have found some Dr.s are pretty good about getting you in, where others are slow. Unfortunetly it does create a lot of unnessary added stress. I think its a normal response for us to all go through after having cancer, we become so terrorized at the slighest possibility of having to go through it again, our minds automatically go the worst places. I struggle with that anytime there is anything out of the normal my Dr. orders. But I know we can all relate in how waiting is the hardest part.  Thank you for keeping me in your thoughts. will be sure to post the findings.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #10
    Don09

    So glad you don't have to wait not knowing through the weekend! You have a lot of people praying for you! 

  • don09
    don09 Member Posts: 108
    #11
    Mollymaude said:

    Don09

    So glad you don't have to wait not knowing through the weekend! You have a lot of people praying for you! 

    Mollymaude

    I do, and am so gratefull for all of you, If I didn't have the support that everyone gives so freely I really don't know what I would do. Will keep you all posted, in the meantime please continue the prayers with crossed fingers and toes if possible. Ha, ha.

  • Dodiefae
    Dodiefae Member Posts: 41 Member
    #12
    Don09

     

    There are a lot of prayers and positive thoughts for you too from all the lurkers (versus posters) as well. 

  • fitwarriornyc
    fitwarriornyc Member Posts: 3
    #13
    Keeping you in my prayers

    Thank you for sharing. I started my YouTube channel specifically for this reason, to let people know they have support and to share my personal cancer story in hope that it will help someone. Please feel free to reach out to me, I would be happy to be your someone else to talk to. I will keep you in my prayers!

     

    https://www.youtube.com/channel/UCctFpg5kYMaVRBmaNvek06g

  • don09
    don09 Member Posts: 108
    edited January 2018 #14
    Dodiefae said:

    Don09

     

    There are a lot of prayers and positive thoughts for you too from all the lurkers (versus posters) as well. 

    Dodiefae

    I am amazed at how many of you have reached out to me offering prayers, I am a strong believer in the power of prayer so I appreciate them. For a while I was a lurker to. I am 1 Yr. out from treatment and was always somewhat hesitant to reach out to others due mostly to my lack of knowledge of the disease, but then it clicked I may not be able to offer knowledge wise but I can offer encouragement. Thanks for your response.

  • don09
    don09 Member Posts: 108
    edited January 2018 #15
    fitwarriornyc said:

    Keeping you in my prayers

    Thank you for sharing. I started my YouTube channel specifically for this reason, to let people know they have support and to share my personal cancer story in hope that it will help someone. Please feel free to reach out to me, I would be happy to be your someone else to talk to. I will keep you in my prayers!

     

    https://www.youtube.com/channel/UCctFpg5kYMaVRBmaNvek06g

    fitwarriornyc

    That is a fabulous idea, and very much needed! Thank you for your offer in being my someone to talk to, something I am sure I will look forward to. It's very difficult having this disease with little or no support, it can be a very lonely and dark place without it. Thank you for the offer and especially your prayers.

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