I am going crazy

janderson1964
janderson1964 Member Posts: 2,215 Member
in Colorectal Cancer #1
I posted before that a routine scan revealed a new spot on my liver after 4 years NED. My oncoclogist told me to have the receptionist make an appointment with my surgeon. Well she didn't even have the number so I called to make the appointment myself. The earliest he is available is 11/10. A 4 week wait so in the meatime I contacted another very reputable hospital for a second opinion evan though I haven't got a first opinion. (I like to have options. I sent them my records as requested and apparently they were delivered last Friday but noone bothered to open them and forward them to the surgeon. This is making me insane. I feel so helpless.

Jeff

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Stay After It....
    Jeff

    It seems that an oncologist or surgeon is only as good as his front-office staff. I've found that out a time or two with all of the various doctors I've been involved with.

    It's important to remember not to RELY solely on someone doing what their supposed to be doing. If you don't get a response in a proper amount of time, it will come back to YOU having to follow up and ensure things are being handled properly and in a timely manner.

    I've had scans lost - records unable to be found - appts that were not confirmed, etc. etc., the list is endless. I learned to be my own advocate and take charge of my own health care.

    While I enlist the help of the staff, it is still my responsibility to make sure things are what they are supposed to be. It's not right - it's just what is.

    You're not helpless, you only feel like you've slipped through the cracks in the system - and you did - probably not the first, and no doubt will not be the last.

    We overcome helpessness with an ally called Empowerment. He's the guy that seizes the initiative and helps direct and ensure that what they are supposed to do for you, gets done. Funny thing too - by standing up and getting involved, you become empowered, which will weaken helplessness.

    That's a blow being 4-years out and facing the possibility of re-engaging after that amount of time in a 'watch and wait' state. I'm not a big fan of the term NED, because it tends to be a little misleading and can lead to some disappointment with our expectations of what the term means versus how the medical community defines it.

    Generally speaking it's 5-years with no recurrence to become NED by definition. But the truth of the matter, is that it really only means "no evidence of anything Today." That's why I like 'watch and wait.' Because, that's what we really are all doing, no matter what we tell our brains.

    Regardless, being out that amount of time facing a recurrence is a reminder of how we can run away from cancer for awhile, but that it can find us. I've always found recurrence to be where the battle is really fought.

    So, just stay with it. Make some phone calls. Get a 2nd opinion. Gather that info and think through it and then put another gameplan together with the onc of your choosing to get back after this again.

    I'm sorry this has happened to you. The good news is that through 'monitoring' you have been alerted early enough to take some action with a very good chance at positive response from surgery and treatment. Will be pulling for you to stay the course and fight on.

    -Craig
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #3
    Sundanceh said:

    Stay After It....
    Jeff

    It seems that an oncologist or surgeon is only as good as his front-office staff. I've found that out a time or two with all of the various doctors I've been involved with.

    It's important to remember not to RELY solely on someone doing what their supposed to be doing. If you don't get a response in a proper amount of time, it will come back to YOU having to follow up and ensure things are being handled properly and in a timely manner.

    I've had scans lost - records unable to be found - appts that were not confirmed, etc. etc., the list is endless. I learned to be my own advocate and take charge of my own health care.

    While I enlist the help of the staff, it is still my responsibility to make sure things are what they are supposed to be. It's not right - it's just what is.

    You're not helpless, you only feel like you've slipped through the cracks in the system - and you did - probably not the first, and no doubt will not be the last.

    We overcome helpessness with an ally called Empowerment. He's the guy that seizes the initiative and helps direct and ensure that what they are supposed to do for you, gets done. Funny thing too - by standing up and getting involved, you become empowered, which will weaken helplessness.

    That's a blow being 4-years out and facing the possibility of re-engaging after that amount of time in a 'watch and wait' state. I'm not a big fan of the term NED, because it tends to be a little misleading and can lead to some disappointment with our expectations of what the term means versus how the medical community defines it.

    Generally speaking it's 5-years with no recurrence to become NED by definition. But the truth of the matter, is that it really only means "no evidence of anything Today." That's why I like 'watch and wait.' Because, that's what we really are all doing, no matter what we tell our brains.

    Regardless, being out that amount of time facing a recurrence is a reminder of how we can run away from cancer for awhile, but that it can find us. I've always found recurrence to be where the battle is really fought.

    So, just stay with it. Make some phone calls. Get a 2nd opinion. Gather that info and think through it and then put another gameplan together with the onc of your choosing to get back after this again.

    I'm sorry this has happened to you. The good news is that through 'monitoring' you have been alerted early enough to take some action with a very good chance at positive response from surgery and treatment. Will be pulling for you to stay the course and fight on.

    -Craig

    THanks Craig. I have always
    THanks Craig. I have always empowered my self and been proactive since day one. I just needed some encouragement. I asume that is you pictured with John Force. I have been a HUGE drag racing fan since I was about 10 years old. At least we have something positive in common.
  • janie1
    janie1 Member Posts: 753 Member
    #4
    when
    Did they say when the surgeon will take a look, and when and who will get back with you? Maybe ask to speak to the surgeon's right hand person....PA, Nurse.....(cant stand front office attitudes). Ask if someone can get back with you tomorrow. If this is a reputable cancer center, they should "get it". Just curious which part of the country you are in, or state, if you don't mind saying. I had the same situation at a sh#t place where they kept delaying and I was off of chemotherapy longer than I needed to be. You have done so well, you can stay on top of this.
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #5
    janie1 said:

    when
    Did they say when the surgeon will take a look, and when and who will get back with you? Maybe ask to speak to the surgeon's right hand person....PA, Nurse.....(cant stand front office attitudes). Ask if someone can get back with you tomorrow. If this is a reputable cancer center, they should "get it". Just curious which part of the country you are in, or state, if you don't mind saying. I had the same situation at a sh#t place where they kept delaying and I was off of chemotherapy longer than I needed to be. You have done so well, you can stay on top of this.

    I am just outside of
    I am just outside of Richmond, VA. They said I could call in about 48 hrs. I don't want to say the name of the hospital since it is an isolated incodent and the lady was very nice. In the meantime I emailed the surgeon at VCU who operated on me the last 2 times. Much to my surprise he emailed me right back from hi iphone. He has been traveling but already took the time to look at my scan images and said he can operate. He said to call him on Friday to discuss it further evan though I have an appointment with him on 11/10.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #6
    janderson1964 said:

    THanks Craig. I have always
    THanks Craig. I have always empowered my self and been proactive since day one. I just needed some encouragement. I asume that is you pictured with John Force. I have been a HUGE drag racing fan since I was about 10 years old. At least we have something positive in common.

    Hey Jeff
    Yes, that is John Force. I got the rare opportunity to meet him and get my pic taken when the NHRA was at the Texas Motorplex in Ennis for the Fall Nationals.

    I wrote a story about it called "The Day I Met the Legend." It's probably back about 3 pages or so by now, but a good story.

    I know it's frustrating when the office staff drops important stuff. I try to remind myself that they have alot of patients and much stuff going, but it's sometimes easy for us to always think it will work out every time. Most of the time it does, but I have to stay up and keep up, or I sometimes fall through the system.

    I am optimistic about them finding this situation early to give you some options and some recourse with treatment. I would be upset if I ever got 4-years out and looked good and then something came back on me.

    I've had cancer 3x and have knocked it back 3x and have never gotten to far down the road without recurrence in my 7.4 year travels with cancer. I applaud you making that many years and hope for all the success with this latest chapter.

    You've got a good handle on the situation.

    -Craig
  • steveandnat
    steveandnat Member Posts: 886
    #7
    Very frustrating
    I agree with Craig...I've learned too that you have to give the directions or else you don't get information, appts ect. I think most onc have too many patients and have a hard time keeping things straight. I have to ask mine about things all the time and then he is good about getting things but I've learned not to expect him or his nurse to be on top of things.
    Hoping the best for you.
    Jeff
  • John23
    John23 Member Posts: 2,122 Member
    #8
    janderson1964 said:

    I am just outside of
    I am just outside of Richmond, VA. They said I could call in about 48 hrs. I don't want to say the name of the hospital since it is an isolated incodent and the lady was very nice. In the meantime I emailed the surgeon at VCU who operated on me the last 2 times. Much to my surprise he emailed me right back from hi iphone. He has been traveling but already took the time to look at my scan images and said he can operate. He said to call him on Friday to discuss it further evan though I have an appointment with him on 11/10.

    Jeff -

    Re:
    ".....Much to my surprise he emailed me right back from hi iphone.....
    ......already took the time to look at my scan images and said he can operate....
    ....He said to call him on Friday ..... evan though I have an appointment with him on 11/10."

    He's probably reading your posts as he travels! Hmmm....
    Ya'know, I hope he doesn't act like an insulted waiter, and
    spits in your open surgical wound...

    The office staff in my surgeon's office acts like they're doing
    you a favor by answering the phone. They straightened out
    a bit after I told them I'd be sending them my full ostomy bags.

    It's a common thing, Jeff... for whatever reason, they all seem
    to act like rectal rejects.

    Good luck with the surgery!

    Best of health,

    John

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