Help - Need Advice

jcavanaugh
jcavanaugh Member Posts: 100
edited March 2014 in Colorectal Cancer #1
Brief history - My dad was diagnosed with colon cancer (stage 4) in May 2002. In 2002, he had one spot removed from his liver. The cancer came back in 2004. We had a second surgery to remove a spot from his liver. It returned in January 2005, he had ablation done to remove a spot. In October 2005, he had surgery/ablation to remove one spot. Every time, we first saw an increase in a cea level which was then supported by a pet scan (1 to 3 cancer spots in the liver). Basically, we have been on the same roller coaster ride for the past 4 1/2 years --> CEA increase (never more than 9) --> PET scan confirmation of 1 to 3 spots --> surgery or radiofrequency ablation --> treatment. In June 2006, he had a clean pet scan with a 5.7 cea. In August, his cea was 3.5 (at this point he was off of treatment since June). My parents recently moved to Williamsburg from Northern Virgina. They are seeing a new oncologist and had a pet test done this week. His pet scan, for the first time ever (not done in Fairfax) was inconclusive according to the oncologist. The pet scan, according to the written report and oncologist showed 2-3 spots (not very bright spots). This scan was not compared to the June scan. No mention of it in his report. In the past, all scans are compared to the previous one. So, he sent us to a surgeon to discuss ablation. My parents saw the surgeon today. He said that he saw 8-10 spots and that all hope was lost. Does this make sense to anybody?? I am very frustrated. We are going to Johns Hopkins for a second opinion. Can anyone provide any advice or anything that could help explain these inconsistencies?? I appreciate anything.

Comments

  • Patrusha
    Patrusha Member Posts: 487
    #2
    I think your second opinion from Johns Hopkins should put you at ease. Another thing your dad could do would be to send copies of his most recent PET scan to his old oncologists and surgeon and have them compared. I think the new folks might be jumping to conclusions... Tell your dad not to give up! He's come a long way...
  • dee42
    dee42 Member Posts: 23
    #3
    First of all, I will forever refuse to accept "all hope is lost"...all hope is never lost. I think you getting a second opinion is definitely in order. Just the fact that your dad's cea was 3.5 in Aug, off treatment and only a month later, he has 8-10 spots and "all hope is lost? Don't think so...my mom was dx'ed in 03 stage II, no mets to the liver, but had 3 recurrences..the most recent in 07/06, stage III, 3/9 nodes...doing chemo now.

    You hang in and do keep us posted....

    Prayers to you.
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #4
    Hi -

    Please don't accept the "all hope is lost" based only a PET scan. Getting a second opinion is a good idea.

    Also, there are clearly differing views regarding comparison of PETs. But, as I understand it comparing one PET to another (when done on different machines) is not usually done because of the slight differences in machines. (At least that is what NIH/National Cancer Institute told me - not a bad source - they actually schedule patients for the same PET machine for repeat scans in order to avoid any machine related differences.) So, this may be why the new facility did not compare the new PET to previous ones. CT's however, should always be compared to prior CT if one is available.

    I think Johns Hopkins is the way to go, but you might also suggest that your parents look into clinical trial evaluation at NIH - they do lots of RFA work there - and they study the so-called "natural course of disease", so sometimes you can get treatment from really good specialists which doesn't involve experimental drugs. If their oncologist seems unable to support this, there are others who will. In spite of all his treatments, it sounds like your Dad has been doing pretty well - you might also want to consult with his former oncologist.

    Wishing you well,
    Betsy
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    I hate it when anyone starts messing around with hope....it's our strongest weapon against the beast!!!! Grrrrrrr!!!!
    I agree, a second opinion is definately in order, and I think Patrusha's idea of sending these to his old docs is a grand idea!
    And hugs to you for being such a wonderful son!!!

    Hugs, Kathi
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #6
    First of all, I also never believe all hope is gone. As long as a cancer patient is here, there is a chance to turn things around.

    Second opinion is always a great idea. In addition to medical help, though, have you considered nutritional help? I feel I can do this without making her feel uncomfortable, but e-mail scouty through this site. She is my inspiration, and a heck of a success story! She was told that hers spread to her lungs. Being the fighter that she is, she juiced everything under the sun, and was able to show those doctors that there is truth to fighting cancer with nutrition. Today, she's healthier than ever!

    Tell your dad we're rooting for him!!!!

    Stacy

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