my scan results

lisa42
lisa42 Member Posts: 3,625
edited March 2014 in Colorectal Cancer #1
Hello,

I had my PET/CT scan yesterday and got my results today at an appointment with my oncologist. Results... CT portion of the scan showed that all nodules in liver and lungs are stable- all except for one nodule in my lungs & that one more than doubled in size from 0.6 cm to 1.4 cm. The PET portion of the scan showed increased activity in all areas of lungs, liver, and rectum. The weird thing about the rectum is that two scans in a row have shown increased PET activity, but nothing shows up there on the CT portion of the scan. I had an exam by my colorectal specialist (Dr. Ramamoorthy, for those of you in San Diego who know her) last week and she felt a nodule, which she estimated about a 1/2 cm. I asked my oncologist why that wouldn't have shown up on the scan. He said that if it's on the inside of the rectum under a certain size, it often won't show up on scans.
Given that it's been bothering me more lately (lots of blood and mucus), Dr. Ramamoorthy and my onc Dr. Helton both agree it should come out. I'm going in this coming week for a cyberknife evaluation on that (and maybe they'll look at that growing lung nodule too). He did say, however, that sometimes the cyberknife rad docs are hesitant to do it on the inside of the rectum because it could possible cause a hole in the rectum, which would result in emergency surgery. So I told him that I'd rather not consider it then, but he said still go for the evaluation and see what they have to say. If that doesn't work out, it looks like I'll be having an internal rectal excision of the nodule at some point. We'd have to figure out the timing, since it would mean I'd have to stop the Avastin for 6 wks prior and 6 wks after. We're also going to be looking into clinical drug trials & I'm most interested at this time in pursuing the one with Dr. Lenz at USC with the drug that targets the cancer stem cells. On that, I emailed Lenz's assistant 2 days ago & she replied that they still haven't been given the green light yet on the trial & to email back in 2 more weeks. I don't know that I'd even qualify- it's so hard waiting. Also, as with all clinical trials, all chemo would have to be stopped 4 weeks beforehand. We won't stop it yet though, because we have no idea when it's going to start and if I can get in.
Dr. Helton talked about how the combo of the Gemzar/Xeloda/Avastin seems to be working now like a dam wall- holding things back, but now it may be springing a few leaks. He's convinced I'd be worse off if I weren't taking anything, but with the constant increase in PET uptake the last two scans now, it clearly isn't giving us the results we'd like.

So far as all the supplements I started a month ago...I stopped them two weeks ago because I decided I better be just on the chemo for my scan to see what it's doing. My thought was that if the supplements were actually helping (which there's really no way of knowing), I then wouldn't have been certain if my scan results were influenced in any way by the supplements & we needed to know how the chemo alone was affecting it.
So, I did have a drop in CEA of 14 points when I first started the supplements, then just a 1 point drop the time after (3 wks later). It was at that point, about 2-1/2 wks ago, that I stopped them. I'm going to resume them again now- my onc told me he doesn't know if they'll help or not but they really won't hurt so, why not?

Emotionally, I really am okay today (& my husband is too- I believe that's an answer to prayer- he usually gets so down and depressed anytime I have a scan that doesn't show tumor size reduction). I don't have that nervous upset feeling in my gut at all. I honestly and logically don't know why, except that I know many are praying for me and I am a believer who believes God hears all those prayers. As a believer, I don't believe He is ignoring the prayers and that he does hear them, but I believe that there must be a purpose in all this. I'm even wondering if maybe God allowed one nodule to grow, because I do know that Dr. Lenz has a requirement of some kind of tumor growth showing on a CT scan in order to even be considered for this stem cell drug clinical trial.
So, a lot is still uncertain & I will let you all know how the cyberknife eval goes. Oh- I mentioned nanoknife to my onc & he said he has referred a few patients there (UCI, the only place it's done in Calif) & all of the patients he's referred there ended up not getting it done. Supposedly the docs up there said surgery or cyberknife would be better to do (at least on those particular patients)- so he said he'd rather me not go there.

So, thanks again to all who are wishing me well and/or praying for me- I value you all & I want to let you know that you are all on my mind and in my prayers too.

Hugs,
Lisa
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Comments

  • msccolon
    msccolon Member Posts: 1,917
    prayers
    Lisa, I pray for you often. You have been battling this hard and I have been watching closely to see how things go for you. I am interested in what your results are regarding the nodule in your rectum. I have been having lots of problems with pain in my rectum and my recent scope showed no growth inside the rectum, so it's got to be related to the nodes outside, there are 2 that show growth. Are you saying that cyberknife would be more plausible for these? I really have to get something done now that we've determined there's no growth inside the colon/rectum.
    mary
  • KathiM
    KathiM Member Posts: 8,028
    I'm putting my arms around you, dearheart....
    I am STILL gonna pray for you, if that's ok?!?!?!?!

    hugs, Kathi
  • lisa42
    lisa42 Member Posts: 3,625
    msccolon said:

    prayers
    Lisa, I pray for you often. You have been battling this hard and I have been watching closely to see how things go for you. I am interested in what your results are regarding the nodule in your rectum. I have been having lots of problems with pain in my rectum and my recent scope showed no growth inside the rectum, so it's got to be related to the nodes outside, there are 2 that show growth. Are you saying that cyberknife would be more plausible for these? I really have to get something done now that we've determined there's no growth inside the colon/rectum.
    mary

    Mary
    Mary,

    Are the 2 nodules that show growth outside your rectum outside on the anus, or do you mean in the pelvic cavity- outside the rectum, but inside the body? If that's what you do mean, then what I was told by my colorectal surgeon is that "the cyberknife folks" (as she put it) prefer to do cyberknife on nodules that are on the outside of the rectum or colon, inside the pelvic/abdominal cavity, then they do on nodules inside the rectum.
    If that's your case, I'd definitely pursue getting a cyberknife evaluation. For the evaluation (depending upon your insurance), you'd probably just need a referral to a cyberknife center from your oncologist. Then, they'd look at your most recent scans and evaluate if you are a candidate for it or not.
    Best wishes to you on that- thanks for your prayers, Mary- I will be praying for you too. :)

    Lisa
  • lisa42
    lisa42 Member Posts: 3,625
    KathiM said:

    I'm putting my arms around you, dearheart....
    I am STILL gonna pray for you, if that's ok?!?!?!?!

    hugs, Kathi

    Kathi
    YES- most definitely & thank you!!! :)
  • msccolon
    msccolon Member Posts: 1,917
    lisa42 said:

    Mary
    Mary,

    Are the 2 nodules that show growth outside your rectum outside on the anus, or do you mean in the pelvic cavity- outside the rectum, but inside the body? If that's what you do mean, then what I was told by my colorectal surgeon is that "the cyberknife folks" (as she put it) prefer to do cyberknife on nodules that are on the outside of the rectum or colon, inside the pelvic/abdominal cavity, then they do on nodules inside the rectum.
    If that's your case, I'd definitely pursue getting a cyberknife evaluation. For the evaluation (depending upon your insurance), you'd probably just need a referral to a cyberknife center from your oncologist. Then, they'd look at your most recent scans and evaluate if you are a candidate for it or not.
    Best wishes to you on that- thanks for your prayers, Mary- I will be praying for you too. :)

    Lisa

    in pelvic/abdominal cavity
    yes, they are in the pelvic/abdominal cavity, pressing on the nerves down there, at least that's what we figure must be causing all the pain. We do see enlarged nodes down there, and since we've confirmed there is no growth on the inside, i suppose it's process of elimination. I will definitely call my oncs office on Monday for a referral to a cyberknife center. Thank you for your prayers, i greatly appreciate them.
    mary
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252
    Thanks for updating us
    Thanks for the update. I've been wondering how things went. All stable except for just one growing - you might be right. That one could be your ticket into the trial, and that trial looks promising. I hope you can find a way to get rid of the rectal nodule soon to relieve that pain. Continued prayers for you.
  • Kerry S
    Kerry S Member Posts: 606
    Dirty old man hug
    Lisa,
    I don’t really know what to say. All that comes to me is I know you are a strong fighter with an even stronger faith in God. Darlin, with that attitude and God in the mix you can beat the monster.
    Much love and prayers going your way.

    Kerry
  • AnneCan
    AnneCan Member Posts: 3,673
    Sorry the results are mixed
    but as usual you are putting the plan in place + continue to inspire us. I am humbled by your knowledge, strength + tenacity in fighting this. I honestly think you could teach a course in it.
  • Lori-S
    Lori-S Member Posts: 1,277
    Lisa
    I am sending out lots of hugs and prayers to you.
  • newperson
    newperson Member Posts: 76
    Lisa, You are in my prayers
    Lisa, You are in my prayers. I'm sorry you got the mixed result. But you a true fighter. You can fight this monster back, at least put them under control. I pray for you that the cycberknife eveluation will go well. I pray for you that you will get into the clinical trial that targets the cancer stem cells. - Lucy
  • newperson
    newperson Member Posts: 76
    msccolon said:

    prayers
    Lisa, I pray for you often. You have been battling this hard and I have been watching closely to see how things go for you. I am interested in what your results are regarding the nodule in your rectum. I have been having lots of problems with pain in my rectum and my recent scope showed no growth inside the rectum, so it's got to be related to the nodes outside, there are 2 that show growth. Are you saying that cyberknife would be more plausible for these? I really have to get something done now that we've determined there's no growth inside the colon/rectum.
    mary

    Mary
    Mary, my husband has tumors in his pelvis which press on the nerves and cause extreme pain in his right leg. He is doing radiation in hoping to shrink the tumors to ease his pain. He has done 6 treatments with 6 more to go. So far we haven't seen any improvement yet. But I think cyberknife would be better. please look into it. You are in my prayers. - Lucy
  • plh4gail
    plh4gail Member Posts: 1,238
    Lisa
    Lisa, you sound so strong. It makes me want to be also. Thank you for that. You and your family have my prayers and bestest of wishes!

    Prayers, Gail
  • traci43
    traci43 Member Posts: 773
    my thoughts are with you
    Sorry for the mixed results, hopefully they can get rid of the rectal nodule and the rest goes smoothly. While growth is never what we want, if it gets you into Dr. Lenz' clinical trial, that would be great. Happy thoguhts, prayers and a big hug to you, Traci
  • msccolon
    msccolon Member Posts: 1,917
    newperson said:

    Mary
    Mary, my husband has tumors in his pelvis which press on the nerves and cause extreme pain in his right leg. He is doing radiation in hoping to shrink the tumors to ease his pain. He has done 6 treatments with 6 more to go. So far we haven't seen any improvement yet. But I think cyberknife would be better. please look into it. You are in my prayers. - Lucy

    thank you
    and I will pray for your husband to get some relief as well. This stuff just really sucks sometimes!
    mary
  • sasjourney
    sasjourney Member Posts: 395
    This could be a blessing
    Lisa,

    This could be the blessing that you mentioned and allow you to take part in the trial. It sounds so promising and Dr. Lenz really believes that it may be the"cure" for colonrectal cancer. I know your faith will keep you strong and God is always with you. He will take care of you.

    There are new treatments always in the works and I know that things will turn around for you. You are an amazing fighter and you will win this battle!!! As always, you are in my prayers and thoughts. I just know good news is coming for you.

    Stay strong my friend,

    Sara
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Scan
    Sorry you didn't get all good news but sounds like you are at least stable in most of them. Glad to see that you are informed as to what your options are and that you can make a sound decision with your doctors in how you want to pursue this. You are always in my prayers. Thanks for keeping us informed.

    Kim
  • valley
    valley Member Posts: 94
    Lisa
    my husbands pet scans

    Lisa

    my husbands pet scans have lite up in the rectum since his first scan in 2006. He has had several biopsies, sigmoidoscopies and ct guarded needle biopsy, barium enema and colonoscopies in the past almost 5 years. Everything has come back no evidence of cancer.
    The scan results state that imflammation due to radiation is causing the scan to lite up. Hope this help. I will be praying for you.

    good luck
    val
  • march15
    march15 Member Posts: 12
    power in prayer
    You are so right in the peace prayer can give you. The night before my surgery I slept like a baby (and I've had many sleepless nights worrying about much less important things) but my friends were taking turns covering me in prayers. I'll be praying for you and your family. Pam
  • pepebcn
    pepebcn Member Posts: 6,331
    plh4gail said:

    Lisa
    Lisa, you sound so strong. It makes me want to be also. Thank you for that. You and your family have my prayers and bestest of wishes!

    Prayers, Gail

    Lisa , of course my prayers and good vibes
    are with you , actually the Pope Benedict is going to be in Barcelona tomorrow and will celebrate a one million people mass ,I will pray for you there!
    Hugs!
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Lisa
    Lisa,
    You will stay in my prayers. The peace God brings is often beyond our comprehension. I will pray that peace continues for you. You are strong, smart and amazing.

    Aloha,
    Kathleen