horrible PET scan

legendsdaughter
legendsdaughter Member Posts: 30
edited March 2014 in Lung Cancer #1
My dad was diagnosed w/stage iv nsclc in November. After his third chemo treatment his cancer marker went down about 50 points. He & I went yesterday for his 4th treatment , at which time he was to get the results of Monday's PET scan. We were horrified to hear that some of the tumors got larger but he now has a mass next to his spine. His doctor immediately told him we're stopping chemo, & she wanted him see a radiation oncologist, he will need a CAT scan of his spine &,a two stage MRI (thoracic and lumbar) ASAP, to see if there is anything in his spinal cord, which would be a medical emergency! He had been having severe pain in his chest and radiating to his back the last couple of days, his voice is now hoarse & he has night sweats which saturate the sheets as well. We went to see the radiation oncologist & he said that they will start radiation for at least 5 treatments or as many as 15. This wil stop the progression of anything near his spine. His Onc. dr said he will resume chemo but we'll see what happens with the radiation. While starting the two stage MRI yesterday he was in such pain that he couldn't stay still so they had to stop the MRI. It had been a long day, as his original chemo appt. was at appt. 9am & now it was 1:30pm (a long time w/out more pain meds).His dr wanted the MRI yesterday but he wanted to go home, take meds & go to sleep. This was a hard day, both physically & mentally, with this setback. The only appt. he could get for an MRI today is in the afternoon so I am going to call in a few mins. to see if there are any cancellations this morning. His dr is not happy that he didn't get the MRI yesterday but understands his plight.

The one thing that is bothering me is that this last PET report states that "the previously observed paraspinal soft tissue mass seen on the left side.....This is similar to the mass seen on the prior study." The problem with this is that no where in the last PET does it mention anything about a paraspinal mass or anything the like. These two PET reports are written by 2 different doctor or techs. I am wondering if the 2nd reader was also looking at the actual scan from last time when writing up or looking at the most recent results.
I HOPE that the last report didn't LEAVE out this information in error & the dr saw it, & that's why she jumped up & started making phone calls yesterday. This is very scary.
Dad is very upset to say the least & looks despondent about this news.
To answer annemarie's question, I think yes with stage IV and the mets to distant organs radiation can do more harm than good. I know that the only reason they are going to do radiation on my dad is because it is close to his spine. This was not in the original plan.

Comments

  • catcon49
    catcon49 Member Posts: 398
    #2
    I am sorry to hear about
    I am sorry to hear about your father. Every visit to my Surgeon I bring a cd of the PET or Cat scan so she can read it herself. Also when the onco dr sends me for a test She wants it done by her people because she trusts them to read it. I'm not saying the radiologist is wrong or not good, but surgeons and such are trained in reading the actual cd. I just always ask for a copy they gladly give it to me. When I am done with the appointment I save a copy in case my doctor moves or I change drs over the years.

    My prays and thoughts are with you and your family during this difficult time.

    STAY STRONG
  • legendsdaughter
    legendsdaughter Member Posts: 30
    #3
    catcon49 said:

    I am sorry to hear about
    I am sorry to hear about your father. Every visit to my Surgeon I bring a cd of the PET or Cat scan so she can read it herself. Also when the onco dr sends me for a test She wants it done by her people because she trusts them to read it. I'm not saying the radiologist is wrong or not good, but surgeons and such are trained in reading the actual cd. I just always ask for a copy they gladly give it to me. When I am done with the appointment I save a copy in case my doctor moves or I change drs over the years.

    My prays and thoughts are with you and your family during this difficult time.

    STAY STRONG

    PET
    That is a great idea. The radiologist's office gave us a cd of the most recent PET to give to the radiation onc., I guess we should have made a copy of it(?). I guess we could still get a copy of it, I'm sure he has paid for it. Are all of the PETs on the same CD or do you think that each one is on their own CD? I am going crazy because I have a copy of all of the PET reports & I don't see anything on the first two that mention a paraspinal soft tissue mass but yet the last report says it was previously seen. The 3 reports were written by 3 different radiologists.My fear is that this last radiologist looked at the last PET cd & the current PET & saw that there was a mass there & that the 2nd radiologist didn't see or remark on it. The oncologist never mentioned any mass close to the spine. In fact she said months ago that any pain in the back is probably from the masses in the lungs pressing on the nerves & it is "referred" pain to the back. I hope that his doctor looked at the actual CD & isn't only relying on the radiologists reports.

    The father's pain is horrible! Before going through yesterday's 2 stage MRI, he said that he took about 6-8 oxycontin & about 12 oxycodone in the past 5 hours. With these meds he still had pain but not as much as the day before when trying to go through the same MRI.
    It seems he has developed a tolerance for these drugs. I thought he would have passed out when he got home but my mom said he was making dinner & was actually feeling good & he is fine this morning.
    Thank you for your prayers. Keep you posted.
  • catcon49
    catcon49 Member Posts: 398
    #4
    legendsdaughter said:

    PET
    That is a great idea. The radiologist's office gave us a cd of the most recent PET to give to the radiation onc., I guess we should have made a copy of it(?). I guess we could still get a copy of it, I'm sure he has paid for it. Are all of the PETs on the same CD or do you think that each one is on their own CD? I am going crazy because I have a copy of all of the PET reports & I don't see anything on the first two that mention a paraspinal soft tissue mass but yet the last report says it was previously seen. The 3 reports were written by 3 different radiologists.My fear is that this last radiologist looked at the last PET cd & the current PET & saw that there was a mass there & that the 2nd radiologist didn't see or remark on it. The oncologist never mentioned any mass close to the spine. In fact she said months ago that any pain in the back is probably from the masses in the lungs pressing on the nerves & it is "referred" pain to the back. I hope that his doctor looked at the actual CD & isn't only relying on the radiologists reports.

    The father's pain is horrible! Before going through yesterday's 2 stage MRI, he said that he took about 6-8 oxycontin & about 12 oxycodone in the past 5 hours. With these meds he still had pain but not as much as the day before when trying to go through the same MRI.
    It seems he has developed a tolerance for these drugs. I thought he would have passed out when he got home but my mom said he was making dinner & was actually feeling good & he is fine this morning.
    Thank you for your prayers. Keep you posted.

    legendsdaughter

    I think the radiologist depart can either put them on one cd or separate. I have had both. The radiologist who reads the scan has to report everything. There have been some things that showed up and then the next time they weren't there. There have been things they the radiologist was concerned about but my surgeon was not worried. I do believe that somethings depend on who reads it, but this may not be the same for your father. I was stage 1a lung cancer with no lymphnode involvement. You will also find the internet helpful. Some terms I didn't know what they were and I typed them in to find out what it meant. As far as the oxycodone and oxycontin, maybe the doctor would give him something else.

    Hoped it helped.
  • augigi
    augigi Member Posts: 89
    #5
    catcon49 said:

    legendsdaughter

    I think the radiologist depart can either put them on one cd or separate. I have had both. The radiologist who reads the scan has to report everything. There have been some things that showed up and then the next time they weren't there. There have been things they the radiologist was concerned about but my surgeon was not worried. I do believe that somethings depend on who reads it, but this may not be the same for your father. I was stage 1a lung cancer with no lymphnode involvement. You will also find the internet helpful. Some terms I didn't know what they were and I typed them in to find out what it meant. As far as the oxycodone and oxycontin, maybe the doctor would give him something else.

    Hoped it helped.

    If he needs that much
    If he needs that much oxycodone, which is a short term "rescue" or breakthrough therapy to cover the oxycontin, he either needs a higher dose of oxycontin, or he needs to add liquid morphine or something similar. Ask his dr.
  • legendsdaughter
    legendsdaughter Member Posts: 30
    #6
    augigi said:

    If he needs that much
    If he needs that much oxycodone, which is a short term "rescue" or breakthrough therapy to cover the oxycontin, he either needs a higher dose of oxycontin, or he needs to add liquid morphine or something similar. Ask his dr.

    Thanks
    Yes I am going to ask his dr about increasing the dosage of oxycodone. Liquid morphine is a drip, right??? He is mobile & insists on going to the store, etc, so I don't think that is a viable option, at this time.

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