MRI results

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Comments

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    tanstaafl said:

    extra bullets

    Jeff are you using the LEF or Moss type list of alternative adjuncts ?  When we experience sustained suspicion of activity, we incrementally add stuff, another molecular target, anticancer extract/drug off-label, or two, or maybe a higher dose.  We also ramp up blood testing, more frequently and more markers.

    At sometime you may strike out with oncs in general, we did.  We use the surgeon(s), a dedicated radiologist, an internal medicine altmed MD who handles many cancer cases, and outside groups like LEF or Riordan Clinic and labs.  

     

    Yeah. I am done with this

    Yeah. I am done with this oncologist which is my second one. I will just see my surgeon for surveilance and follow up care. No more oncologist unless the day comes where i need treatment avain.

    BTW  if i end up having surgery. No chemo afterwards. Done the mop chemo 3X  and I am over it now.

  • danker
    danker Member Posts: 1,276 Member
    oncologisi

    All my initial doctors, other than my internist, were just given to me.  When the results of the colonoscopy was a tumor, The hospital just scheduled me to see a surgeon on Monday. They also selected my oncologist, who was the biggest jerk i've ever met.  Upon realizing this, I went to my surgeon, the most caring doctor I have ever met, with a list of three oncologists at the hospital.  The surgeon gave me a consult with my new oncologist.  Over three years later I still see this onc.  When I told my wife I was going to fire the first one, she said:"youj cannot do that!" I said just watch me. Ultimately we are paying these people and I don;t want to pay him any longer.  

    So if you think you need a change, go for it!!!!

  • lp1964
    lp1964 Member Posts: 1,239 Member

    I have read several times

    I have read several times that biopsys are not 100% and more and more doctors are taking tbe wait and see approach. This is one tiny pea sized nodule near rbe surface of the live. My surgeon who recommended waiting is the head of the entire surgical department at a large inter city NCI recognized hospital. He has been performing liver resections for over 30 years. He was just recognized in US News as being in the top 1% in the entire country in his specialty.

    Besides I have been fighting cancer for 8 years. How many years have you been fighting and you are going to tell me that I am being bullshitted because you have a different opinion.

    You should keep your opinions to yourself if you donr have anything positive to say. I was really at peace about all of this until you pissed me off. 

    I posted to get support from the veterans here who know how to support each other in a positive way.

    I apologize,

    I didn't intend to make you feel that way.

    Again, I'm sorry and wish you the best outcome.

    Laz

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member

    Yeah. I am done with this

    Yeah. I am done with this oncologist which is my second one. I will just see my surgeon for surveilance and follow up care. No more oncologist unless the day comes where i need treatment avain.

    BTW  if i end up having surgery. No chemo afterwards. Done the mop chemo 3X  and I am over it now.

    clarification on chemo

    Jeff, just because we are long done with the oncologists doesn't mean she's off chemo - several of her doctors have signed scripts for her chemo, UFT aka tegafur-uracil.   We use  multiple adjuncts, including many from the LEF list, *with* low dose UFT-LV full time.  The closest available drug in the US is low dose xeloda but my thought is that the FDA should be roasted/defunded until they have some better cross border policy on UFT - it's much more friendly and adaptable for successful long term use.  

    I am concerned that if she even pauses on the chemo lite right now, because of CEA instability that something will take off even though the bad stuff in general has been shrinking and disintegrating, slowly.   

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    danker said:

    oncologisi

    All my initial doctors, other than my internist, were just given to me.  When the results of the colonoscopy was a tumor, The hospital just scheduled me to see a surgeon on Monday. They also selected my oncologist, who was the biggest jerk i've ever met.  Upon realizing this, I went to my surgeon, the most caring doctor I have ever met, with a list of three oncologists at the hospital.  The surgeon gave me a consult with my new oncologist.  Over three years later I still see this onc.  When I told my wife I was going to fire the first one, she said:"youj cannot do that!" I said just watch me. Ultimately we are paying these people and I don;t want to pay him any longer.  

    So if you think you need a change, go for it!!!!

    It was the same way with me

    It was the same way with me in the beginning. The jospital just made appointments for surgeons and oncologist. This oncologist is my second one after i fired the one the hospital sent me to. I am ready to change again if i need one. For now i am just going to let my surgeon handle everything. If it turns out to be cancer and i have another resection with clear margains and no other evidence of disease i will NOT be doing mop up chemo.

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    It was the same way with me

    It was the same way with me in the beginning. The jospital just made appointments for surgeons and oncologist. This oncologist is my second one after i fired the one the hospital sent me to. I am ready to change again if i need one. For now i am just going to let my surgeon handle everything. If it turns out to be cancer and i have another resection with clear margains and no other evidence of disease i will NOT be doing mop up chemo.

    Biopsys can be dead

    Biopsys can be dead wrong.....I had a tumor in my colon the size of a fist completely blocking my colon,   they took a biopsy of it and it came back pre-cancerous .... never mind digging and looking for a tiny spot ...... it was huge and right there, and path came back wrong .....they couldn't figure out what was going on so they sent me to a gyno. doc at a bigger cancer centre ..... anyway long story .......   Stick with your surgeon, he sounds spot on.  

  • marbleotis
    marbleotis Member Posts: 720 Member
    I think

    I think you answered your own question.  Time for a new Onc.

    Be good to yourself!

  • janderson1964
    janderson1964 Member Posts: 2,215 Member

    I think

    I think you answered your own question.  Time for a new Onc.

    Be good to yourself!

    New onc is definately in the

    New onc is definately in the future if and when the time comes that i need one again.

  • Deena11
    Deena11 Member Posts: 199 Member
    Thinking about you

    You sure have gone on a wild rollercoaster ride. I'd go the some route as you have decided to go...get another (3rd) Onc.  You have always been a top contributor on this board.  We are all pulling for you!!

    Deena

  • Luckygirl2
    Luckygirl2 Member Posts: 308
    thinking about you

    I have a 3 month wait for another CT scan, seems I have multiple enlarged nodes, wait and see...very stressful.  October seems a long way off!  I hope you get great news! 

     

    Debbie

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Deena11 said:

    Thinking about you

    You sure have gone on a wild rollercoaster ride. I'd go the some route as you have decided to go...get another (3rd) Onc.  You have always been a top contributor on this board.  We are all pulling for you!!

    Deena

    I know you all are but thank

    I know you all are but thank you for saying so. Its good to hear.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member

    thinking about you

    I have a 3 month wait for another CT scan, seems I have multiple enlarged nodes, wait and see...very stressful.  October seems a long way off!  I hope you get great news! 

     

    Debbie

    It seems long now. But it

    It seems long now. But it will creep on you/us faster than you think. It looks like we will be scanning buddies.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    lp1964 said:

    I apologize,

    I didn't intend to make you feel that way.

    Again, I'm sorry and wish you the best outcome.

    Laz

    Thank you Laz. As you can see

    Thank you Laz. As you can see we are all a little sensitive around which I am sure you are as well. Afterall it is a sensitive subject that is all personal to each of us in our own way. I try to keep that in mind and choose my words carefully when I am posting. I wish you the beas as well. I care for everyone here as if they were family.

  • lp1964
    lp1964 Member Posts: 1,239 Member

    It seems long now. But it

    It seems long now. But it will creep on you/us faster than you think. It looks like we will be scanning buddies.

    Thank you for accepting...

    ...my apology. It was a big relief. The last thing I want is to offend anyone here, but your emotions just got a hold of me too. I haven't gone through a fraction of what you have, but I want you to know that I deeply care about each and every one of us here.

    I have my surgery coming up in like 6 weeks. I saw 4 surgeons already and I was treated on a very superficial level. If they promised to look at the CR and call me back, they didn't. One was checking his text while I was talking, so I had to stop to get his attention. Needless to say I'm getting nervous about it.

    Take care till next time.

    Laz

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    lp1964 said:

    Thank you for accepting...

    ...my apology. It was a big relief. The last thing I want is to offend anyone here, but your emotions just got a hold of me too. I haven't gone through a fraction of what you have, but I want you to know that I deeply care about each and every one of us here.

    I have my surgery coming up in like 6 weeks. I saw 4 surgeons already and I was treated on a very superficial level. If they promised to look at the CR and call me back, they didn't. One was checking his text while I was talking, so I had to stop to get his attention. Needless to say I'm getting nervous about it.

    Take care till next time.

    Laz

    Yeah dealjng with some of

    Yeah dealjng with some of these doctors can be so frustrating. I feel your pain. You will be fine though. You ar doing the right thing by not rushing into it like so many of us do including me when first diagnosed. That is why it is no big deal for me to wait 3 months and rescan. Years of experience are paying off. 

    Its normal to be nervous. I was scared to death before my fourth surgery and I really dont want another surgery. However i would take surgery of chemo in a second.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    smokeyjoe said:

    Biopsys can be dead

    Biopsys can be dead wrong.....I had a tumor in my colon the size of a fist completely blocking my colon,   they took a biopsy of it and it came back pre-cancerous .... never mind digging and looking for a tiny spot ...... it was huge and right there, and path came back wrong .....they couldn't figure out what was going on so they sent me to a gyno. doc at a bigger cancer centre ..... anyway long story .......   Stick with your surgeon, he sounds spot on.  

    I think my surgeon is spot on

    I think my surgeon is spot on and I am at peace with the decision to wait. Many years of fighting has taught me some patiance. Not only is the spot tiny but is is located right behind a rib which would make it evan harder to get an accurate biopsy. I am still holding out hope it is nothing. I say my chances are 50/50. Either way at least I know it can be dealt with surgically. Not that I want surgery but it is better than chemo. I will not do chemo again unless it is for non-resectable disease.