Who_am_i
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Who_am_i

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      • August 14, 2019 at 1:11 pm
      Who_am_i
      Participant
      Hi, Rich, this is all that added to my confusion. I just looked up my records. I was seeing the melanoma oncology dept at Beth Israel medical center. I was diagnosed 5/13, I had 4 CT scans every 3 months post diagnosis and one head MRI and nothing ever again. One of my best friends was diagnosed one year after me, same stage, same surgeon, same melanoma dept but different oncologist. He’s still having scans, only difference was he chose the interferon ( he regrets it ). I lost confidence when my oncologist said scans aren’t necessary after the first year, so I couldn’t see driving from the Cape through rush hour traffic to have a five minute appointment and blood work my PCP could do. I had a bout of debilitating vertigo and oncologist said , well that’s not how Mets to the brain presents sooo, my ENT(local) said Ha! Famous last words and ordered an MRI, I think I will get his opinion. I reached out here because I can not tell my family my concerns and I knew I would get the encouragement I needed to listen to myself .
      • August 14, 2019 at 12:56 am
      Who_am_i
      Participant
      Thank you. That’s one of the reasons I quit going to Boston oncologist. No scans, a quick feel of my groin, told him unless he had X-ray vision , I saw no reason to make the drive.
      • December 2, 2015 at 9:10 pm
      Who_am_i
      Participant

      Beth Israel Deaconess Medical Center Boston, it just really weird to me. I had disagreement with oncologist about every three month visits, why bother I told him unless he had X-ray vision!  He tried to tell me if something popped up I'd get an appt faster if I come every three months! Say what?!?! Three hour drive to feel my armpits? my PCP around the corner can do that! I've become very discouraged

       

      • December 2, 2015 at 9:10 pm
      Who_am_i
      Participant

      Beth Israel Deaconess Medical Center Boston, it just really weird to me. I had disagreement with oncologist about every three month visits, why bother I told him unless he had X-ray vision!  He tried to tell me if something popped up I'd get an appt faster if I come every three months! Say what?!?! Three hour drive to feel my armpits? my PCP around the corner can do that! I've become very discouraged

       

      • December 2, 2015 at 9:10 pm
      Who_am_i
      Participant

      Beth Israel Deaconess Medical Center Boston, it just really weird to me. I had disagreement with oncologist about every three month visits, why bother I told him unless he had X-ray vision!  He tried to tell me if something popped up I'd get an appt faster if I come every three months! Say what?!?! Three hour drive to feel my armpits? my PCP around the corner can do that! I've become very discouraged

       

      • December 2, 2015 at 3:50 pm
      Who_am_i
      Participant

      I too have questioned that. I have had no scans since one year NED 3b, mitosis18. New oncologist said initial every three month scans after diagnosis for first year was only because of concerning areas and not protocol. It has never made sense to me after reading everyone's posts here. I have never had a PET scan, CT scan as said every three months for first year then nothing????

      • December 2, 2015 at 3:50 pm
      Who_am_i
      Participant

      I too have questioned that. I have had no scans since one year NED 3b, mitosis18. New oncologist said initial every three month scans after diagnosis for first year was only because of concerning areas and not protocol. It has never made sense to me after reading everyone's posts here. I have never had a PET scan, CT scan as said every three months for first year then nothing????

      • December 2, 2015 at 3:50 pm
      Who_am_i
      Participant

      I too have questioned that. I have had no scans since one year NED 3b, mitosis18. New oncologist said initial every three month scans after diagnosis for first year was only because of concerning areas and not protocol. It has never made sense to me after reading everyone's posts here. I have never had a PET scan, CT scan as said every three months for first year then nothing????

      • September 7, 2015 at 11:24 pm
      Who_am_i
      Participant

      Ahhh , yes I am just about to drop out! No more oncologist, clean eating and mmj for pain and as an antidepressant. Kind of fun smoking my way through the gambit untill I find the proper hybrid that covers mood and pain. Give up th ghost… Marijuana is our new cure I truly believe

      • September 7, 2015 at 11:24 pm
      Who_am_i
      Participant

      Ahhh , yes I am just about to drop out! No more oncologist, clean eating and mmj for pain and as an antidepressant. Kind of fun smoking my way through the gambit untill I find the proper hybrid that covers mood and pain. Give up th ghost… Marijuana is our new cure I truly believe

      • September 7, 2015 at 11:24 pm
      Who_am_i
      Participant

      Ahhh , yes I am just about to drop out! No more oncologist, clean eating and mmj for pain and as an antidepressant. Kind of fun smoking my way through the gambit untill I find the proper hybrid that covers mood and pain. Give up th ghost… Marijuana is our new cure I truly believe

      • June 10, 2015 at 12:58 am
      Who_am_i
      Participant

      I wa told stage four is fast tracted with social security and you should be receiving benefits within 60 days

      • June 10, 2015 at 12:58 am
      Who_am_i
      Participant

      I wa told stage four is fast tracted with social security and you should be receiving benefits within 60 days

      • June 10, 2015 at 12:58 am
      Who_am_i
      Participant

      I wa told stage four is fast tracted with social security and you should be receiving benefits within 60 days

      • March 26, 2015 at 6:10 pm
      Who_am_i
      Participant

      I forgot one other thing, if you do develop lymphedema, you will have to wear a compression sleeve and that will cover your tattoo- I'm still thinking another tattoo on your other arm is your best bet. I wish you peaceful thoughts

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