Crazy with worry...

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musiclover
musiclover Member Posts: 242
edited March 2014 in Colorectal Cancer #1
I've been writing to the group for sometime about my friend Mark. Today he finally went for a follow up CT scan (two month wait!) after his Feb. 2nd rectal surgery. During the surgery they found a nodule on his liver; a biopsy showed it was cancer. It has been agony waiting and wondering if Mark has more cancer aside from the one nodule. Meanwhile they've been getting him ready for a clinical trial of chemo (Avastin, Xeloda, Oxy.) hoping whatever is there will shrink and he'll be a candidate for surgery.

After his scan I accidentally saw it on a computer screen while I went to the restroom. What I saw has me very concerned. Of course I'm no doctor or radiologist and have no clue how to read a scan but this clearly showed his lungs and innards and from what I could make there were many spots everywhere except for one lung which was completely clear. Mark's birthday is April 1st (Sat.) and I've asked the doctor to save any bad news until after that day if possible. Has anyone ever seen their scans? Were there any noticable spots? I'm crazy with worry. He's so thin - barely gained a pound since the surgery. I want to make this the best birthday I can for him so I'm going to try to put that aside and put on my happy face.

I could scream about the doctors not doing a CT BEFORE the surgery. They may have been able to remove that spot (last scan was in September). I'm mad at myself for not insisting on it. I've been very diligent finding him the best surgeons and drug regimens but somehow I didn't push hard enough for that. Just worn out I guess. Sorry for the rambling...

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  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #2
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    Kathrynn - I can understand how worried you are.

    But, remember you are not a radiologist. A real expert at NIH told me just last week that reading a CT scan is sort of like a rorschach test - if you look at it long enough you can see anything. So, you really shouldn't assume anything about what you think you saw.

    Regarding scan before surgery. I had a CT before surgery and it showed "something" in the liver. Surgeons and radiologists were puzzled. It or something close to where "it" was biopsied positive during surgery. But they didn't do any resection at that time - my surgeon indicated that such invasive surgery was not a good plan until they knew more after some chemo and additional scans.

    And, I am doing well.

    So, while I totally agree that Mark should have had a CT done earlier, there is probably really nothing lost. They aren't going to start chemo, especially Avastin, until the surgery is fully healed - nominally at least 6 weeks.

    Take care.

    Betsy
  • cherriann
    cherriann Member Posts: 155 Member
    #3
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    not to get your hopes up or down but i too was looking through the window trying to catch a glimose of my cat scan and i thought i seen many abnormalities, best to wait for the radiologist for the read out. mine turned out well!! keep the faith!!
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
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    Kathryn,
    Don't beat yourself up, my dear....are you a Radiologist, Oncologist, and all other ologists rolled into one? No, of course not. I saw my PET scan, and it was very wierd. All sorts of stuff to scare the daylights out of me. I didn't read it right.
    If you get a chance, read my Caregiver's bill of rights on my page (in gallery, too if you search).
    You are so great to be supporting Mark so much, don't let it get to you.
    Hugs, and prayers,
    Kathi
  • musiclover
    musiclover Member Posts: 242
    #5
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    Betsydoglover said:

    Kathrynn - I can understand how worried you are.

    But, remember you are not a radiologist. A real expert at NIH told me just last week that reading a CT scan is sort of like a rorschach test - if you look at it long enough you can see anything. So, you really shouldn't assume anything about what you think you saw.

    Regarding scan before surgery. I had a CT before surgery and it showed "something" in the liver. Surgeons and radiologists were puzzled. It or something close to where "it" was biopsied positive during surgery. But they didn't do any resection at that time - my surgeon indicated that such invasive surgery was not a good plan until they knew more after some chemo and additional scans.

    And, I am doing well.

    So, while I totally agree that Mark should have had a CT done earlier, there is probably really nothing lost. They aren't going to start chemo, especially Avastin, until the surgery is fully healed - nominally at least 6 weeks.

    Take care.

    Betsy

    Betsy, thanks again for your words of comfort and wisdom. I received an email from the doctor. He's ready to put Mark on the trial. People aren't allowed on the trial unless there is "evidence of disease" so apparently that was reconfirmed with the CT. We just don't know how much disease there is and he won't discuss the results until Monday (after Mark's Birthday). I will try my best to think positive thoughts. Having this board helps immensely. Kathryn
  • Kanort
    Kanort Member Posts: 1,272 Member
    #6
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    Hi Kathryn,

    I am sorry you having to worry about the unknown. That is the hardest part....not exactly knowing what Mark is facing.

    But, what I want you to remember is what an incredible caretaker and friend you are. Your support and advocacy for Mark is truly amazing, so please don't look back on what wasn't done. Try and focus on the fact that if it does show new growth, you have a plan secured for action. Then BELIEVE that all will be well and know that you have done your very best.

    Please give Mark a hug and wish him Happy Birthday. I know that you will make it a memorable day for him.

    Sending you strength and thinking of you both.

    Love,

    Kay
  • nanuk
    nanuk Member Posts: 1,358 Member
    #7
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    even if what you thought you saw is additional cancer, there is little they can do with surgery;
    if there is more than one location, esp lungs, a systemic-(chemo) approach is probably the only one, other than alternatives-but I agree with the other posts here; there are a lot of "spots" that show up on scans that are just that-spots..only a radiologist can identify them as cancer. What I don't understand is the 2 month wait for a scan..that seems unreasonable, unless there is a
    prescribed time between scans.
    You might also consider a 2nd opinion from one of the major centers-MD Anderson, Sloan Kettering, Mayo, etc. Bud
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #8
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    Hi Kathryn,

    I want to say we all think you are great in what you are doing and understand how hard it is. I'm sure Mark thinks you are great too since it is always nice to have somebody help them fight for what is needed. Don't beat yourself up for what you didn't do. We all have those stories of what we should not have ignored too as a patient. You need all your strength for what is going to happen next. Have a great day with Mark on his Birthday for a little relaxation. This will help with what will come on Monday. We are all sending good vibes and pulling for you and Mark.

    Hugs!!! (one for Mark too)

    Lisa
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #9
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    lfondots63 said:

    Hi Kathryn,

    I want to say we all think you are great in what you are doing and understand how hard it is. I'm sure Mark thinks you are great too since it is always nice to have somebody help them fight for what is needed. Don't beat yourself up for what you didn't do. We all have those stories of what we should not have ignored too as a patient. You need all your strength for what is going to happen next. Have a great day with Mark on his Birthday for a little relaxation. This will help with what will come on Monday. We are all sending good vibes and pulling for you and Mark.

    Hugs!!! (one for Mark too)

    Lisa

    Happy birthday to Mark from oz. Kathryn.....it has been said before but I will repeat. Being a carer is probably a lot harder than being the one with cancer. I know because throughout my ordeal I saw my lovely wife Jen hold her head high with incredible strength and courage, just as you are doing now. Jen was obviously extremely worried but battled on. I always talked with her openly and wanted her to know that we both needed to share our emotions together.
    Dear girl, you are beating yourself up for the "what ifs"......there are things here beyond your control.I commend you for doing all you can to get info to be able to help and understand Marks cancer. Just by doing that you have made a huge difference to his situation. Keep doing what you are doing and I am sure that Mark will benefit from it.
    Huggs from oz, Ross and Jen
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #10
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    Hi again,
    First just let me say that it is possible you were not even looking at Marks scan. At least at my hospital they do these scans back to back and the one up on the screen may not have even been your friends. If it was, then like you yourself said, you are not a radiologist. One time I was shown my scans (on the computer) when I had 2 nodules on my lung......I could not tell the difference between those nodules and all the other lymph nodes and such in my lungs. The doctor was like, see, there is one and I was like "OK, if you say so"......Anyway, there is really no sense fretting about something that has not happened yet that you do not know the outcome of. Just try to have a good time on Marks birthday and celebrate the fact that he will be accepted into the trial! You know, honestly at least from my experiences things don't just pop up and go nuts in a 2 month period of time. If there is something showing up on the scans now that was not seen before, it was probably already there, just too small to see. Does that make sense?
    Anyway, I know it is easier said than done, but don't freak out until/unless you have a reason to.
    Take care,
    Susan.

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