scared and confused at his point

jcorum
jcorum Member Posts: 54 Member
in Anal Cancer #1

I posted last week that my colorectal surgeon wants to do another biopsy and I wondered why. Wel, my chemo doc released me in March and told me to go to my go now for blood work. I went in sept. he is in the same medical group as my colorectal surgeon and I guess somehow my bloodwork results didn't get seen by the colorectal doc til my appt the first week of dec. I am going to assume that somehow my go thought my cancer doc would/did get them. Evidently something in my bloodwork came up concerning but the cancer doc didn't see that til dec. Bloodwork was sept 11th. When I was in his office, he said to schedule the biopsy and I tled him it was time for my yearly ct scan. Actually, I had the last one in sept 2013 so I am 3 months late for it. So, I was still not real concerned except Tuesday of this week, I have had a discomfort u dear my right rib and left rib. Of course, I get to checking that out and it can be symptoms of liver mets. He also asked did I want to do the biopsy and scan this year or wait til January? I originally said January, and he replied "ok, no hurry" end om conversation. My scan was for jan 6th but since he acted kinda strange and said he wanted to do a biopsy, which was random, the fact my bloodwork was off (I know the cholesterol was high, for one thin, not sure what else) and when my under ribs on both side got discomfort this week, I moved the scan to tues. My opinion is he thinks it could be back and mets (with the anascope , he said everything g down there looked great) why would a biopsy down there be scheduled a week after the ct scan because if it shows mets to liver, really no point in the biopsy in the anus, is there? so some would think since he said "no hurry" it means everything looks ok on the bloodwork, manual check of nodes (he doesn't know about the rib discomfort since it just startEd tues) but I think , because he has been a kinda gloom and doom guy from day one, that he is subconsciously saying no hurry because there's no hope since it would mean to far gone and a death sentenice no matter what you do. It just buys you a little time. I don't have PAIN u see the rib cage on either side but it started the same day and I can feel something there. Not manually by touching it, but I side. Hard to explain. No right shoulder back pain tho. By reading on here and the rare cancer alliNce, it puts the fear in me thinking it could be in my liver. So in the last few days, I haven't slept,  gag periodically throughout the day from nerves, can't eat cuz of nerves. Terrified, actually. And wondering why he would say " no hurry". My chemo doc and radiation doc were so positive and encouraging all aLong. I was stage 2. Kept saying I was going to be cured. This doc on my initial visit  with my hubs and mom in the room with me, said "take your family to disneyworld before you start treatment  because you might not make it and it will give them something to remember you by". That attitude is what makes me think he wouldmy hurry with the scan, wanting me to enjoy a last Christmas without knowing because if it is, is am a dead duck anyway

 

 

 

 

 

 

Comments

  • qv62
    qv62 Member Posts: 434 Member
    #2
    jcorum

    I am no expert on any of this but I am an expert on letting my imagination run away with me, so I would take some deep breaths and try not to read into someone who told you to go to Disney as your familys last memory. What I would do is get on the phone tomorrow and demand some explanation as well as get on the phone and see a new doctor. I hope this all works out well and only you know what is best for you but I would seek answers and new consult. Please keep us posted.

  • jcorum
    jcorum Member Posts: 54 Member
    #3
    qv62 said:

    jcorum

    I am no expert on any of this but I am an expert on letting my imagination run away with me, so I would take some deep breaths and try not to read into someone who told you to go to Disney as your familys last memory. What I would do is get on the phone tomorrow and demand some explanation as well as get on the phone and see a new doctor. I hope this all works out well and only you know what is best for you but I would seek answers and new consult. Please keep us posted.

    I wish this constant

    I wish this constant discomfort where my liver is hadnt started this week, i wouldnt be as scared. Definitely feels like something is there. Wish i had made sure the results of the bloodwork was sent from my gp to the doc in sept, rather than now. Wish i had gotten my ct scan in sept like i was supposed to instead of putting it off.  i have felt great for 4 years, NED last month, no side affects except bleeding sometimes depending on my bowel movement. Still feel great, except for the whatever i know feel in the liver area. I have really not experienced any residual sude affects. I was blessed

  • 0626june
    0626june Member Posts: 73
    #4
    jcorum said:

    I wish this constant

    I wish this constant discomfort where my liver is hadnt started this week, i wouldnt be as scared. Definitely feels like something is there. Wish i had made sure the results of the bloodwork was sent from my gp to the doc in sept, rather than now. Wish i had gotten my ct scan in sept like i was supposed to instead of putting it off.  i have felt great for 4 years, NED last month, no side affects except bleeding sometimes depending on my bowel movement. Still feel great, except for the whatever i know feel in the liver area. I have really not experienced any residual sude affects. I was blessed

    could be

    I had a very similar sensation and went into the Dr, concerned about livet mets.  Felt like the "stitch in the side" I used to get from running, but was constant. Turned out that my intestines were filled with poop.  Not blocking, but still swollen.  Due to the radiation and inflammation, things weren't passing through. Could this be it?

     

  • eihtak
    eihtak Member Posts: 1,473 Member
    #5
    jcorum said:

    I wish this constant

    I wish this constant discomfort where my liver is hadnt started this week, i wouldnt be as scared. Definitely feels like something is there. Wish i had made sure the results of the bloodwork was sent from my gp to the doc in sept, rather than now. Wish i had gotten my ct scan in sept like i was supposed to instead of putting it off.  i have felt great for 4 years, NED last month, no side affects except bleeding sometimes depending on my bowel movement. Still feel great, except for the whatever i know feel in the liver area. I have really not experienced any residual sude affects. I was blessed

    jcorum.....

    I am so sorry that the anxiety has gotten to this point for you. Please listen to what others have said.....take a few deep breaths and think about the whole situation. We are not able to diagnose things ourselves and often worry over the things our imagination creates, thats part of this game I guess. Maybe I've just read things wrong, but your communication with your medical team seems very confusing, I would call and ask for some clear answers until you are satisfied......remember YOU are the boss here, they work for you!! If you are not satisfied with your treatment , please seek out another doctor it is very important to clearly communicate with them.

    I am almost 4 yrs post treatment and still need to be careful of what and when I eat. Although I have an ostomy, my digestive system is the same as others until the point of "exit." There are often times I feel a pinch or twinge in my abdominal area usually related to something I ate. Also, there are many other reasons for pain in that area, gas, an ulcer, a muscle strain ........ please keep us posted. I will have you in my thoughts.

    katheryn

  • mp327
    mp327 Member Posts: 4,440 Member
    #6
    jcorum

    Since your colorectal doctor seems to not be giving you clear answers as to why he wants a biopsy and when he thinks you should have the CT scan, I would definitely seek out a second opinion.  By all means, get the CT scan on Tuesday, but keep questioning that biopsy and why he wants one if "everything looks great," as per your last anoscope.  Neither my colorectal doctor nor my radiation oncologist are in favor of routine post-treatment biopsies, due to potential healing complications of the radiated skin. 

    As for your pain, it could be that your intestines are not moving stuff through fast enough (decreased motility).  This can cause partial blockages, which, as in my case, resulted in pain right where you describe yours to be.  Of course, I didn't know until I ended up going to the ER that that's what was causing it.  A partial blockage can still let enough waste through to not send up a red flag that that's the problem.  It's even possible to think it's constipation.  Taking either a laxative or Imodium when there's any blockage is a very bad idea.  I'm not saying this is what you have, I'm just saying that your symptoms sound similar to mine.  My pain was a different kind of pain than any other I had ever experienced.  Now that I know that pain and what causes it, it really gets my attention when it happens.  If you do have a partial blockage going on at the time of the CT scan, it should show up on the scan. 

    Just because you are having pain in the area of your liver, do not assume that it's liver mets.  There are many other things that can cause such pain.  I hope the CT scan will relieve your fears and that it turns out to be something simple, such as gas.  I also think cramping is a common problem in radiated intestines as waste passes through, so this could also be the issue.  Have the CT and I hope you can get the results ASAP.  Let us know what you find out.  Also, if I were you, I would be dumping that downer of a colorectal doctor.

    Martha

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #7
    Scared, but verify!

    Hello, jcorum - It's very scary, for sure, to have the dread of cancer recurrence hanging over your head.

    From what you wrote, though, you seem to letting your imagination run away with you and are reading a lot into what the MDs are casually saying. You must ask more pointed questions of the medicos. Write their replies down. If you don't understand what they are telling you, tell them to say it again in plain English. It's your right to understand! You also have the right to receive copies of all your labwork results, scans, x-rays, pathology reports, everything. Get them. If you don't understand what the reports say, tell the docs to explain them to you in terms you can understand.

    If this is what truly happened: "This doc on my initial visit with my hubs and mom in the room with me, said, "Take your family to disneyworld before you start treatment  because you might not make it and it will give them something to remember you by"." then you must get a second opinion at the very least or switch doctors at the most. That is an irresponsible thing to say, especially to someone with only a stage II cancer. Does this person have any other experience with anal cancer or are you the guinea pig? Find someone with experience treating this rare disease!

    You are letting the docs coast along and allowing it to drive you crazy. You are your own best advocate, so advocate on your own behalf beginning now.

  • nicotianna
    nicotianna Member Posts: 209
    #8
    scared and confused

    Who is your primary physician?  Go to that person & get a REAL physical exam & bring your labs along.  I think you have let your imagination go wild!  A good doc will check for nodes in your chest, neck, inguinal region & elsewehere.  He/she should check your abdomen...tap on your chest & asssess your liver.  High cholesterol is no indication of cancer!!!!

    Abnormal liver enzymes (Alt, sgot, sgpt) might be an indication.

    This is just for starters!

    Nic

     

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #9
    nicotianna said:

    scared and confused

    Who is your primary physician?  Go to that person & get a REAL physical exam & bring your labs along.  I think you have let your imagination go wild!  A good doc will check for nodes in your chest, neck, inguinal region & elsewehere.  He/she should check your abdomen...tap on your chest & asssess your liver.  High cholesterol is no indication of cancer!!!!

    Abnormal liver enzymes (Alt, sgot, sgpt) might be an indication.

    This is just for starters!

    Nic

     

    Yes! Put your primary doctor into the loop.

    Nicotiana's suggestion about seeing your primary doctor is an excellent one. My poor primary is the only doctor out of the loop in my cancer care. Since the specialists always forgot to include him, I periodically make an appointment to see him just to get him caught up and to show him the most recent labs, scans, etc. So, by all means, see your primary armed with all your medical results and while you're there, you could ask for a recommendation for a second opinion of any of the specialists who are not taking you seriously.

    "Abnormal liver enzymes (Alt, sgot, sgpt) might be an indication. [of cancer]" - But they are more likely to indicate other medical conditions. <http://www.mayoclinic.org/symptoms/elevated-liver-enzymes/basics/causes/sym-20050830&gt; - this doesn't appear to be an exhaustive list, either. Here's a more technical article about figuring out elevated enzymes: <http://www.medscape.com/viewarticle/756142&gt;  Elevated enzymes could be caused from something as simple as Tylenol (acetominophen). And as the 2nd article says, the lab values may not even be real. 

  • nicotianna
    nicotianna Member Posts: 209
    #10
    scared and confused

    Google labs for cancer of the liver.

    Nic

  • pializ
    pializ Member Posts: 508 Member
    #11
    nicotianna said:

    scared and confused

    Google labs for cancer of the liver.

    Nic

    scared and confused

    I would write a list of questions,  phone & ask them writing down the answers. Whatever the answers I would be asking for a change of doctor. 

    Medication can give unusual results on blood tests.

    What you need to focus on is facts. Hold onto that. Anything else are just thoughts which are being felled by anxiety. Not saying I haven't been there, because we all have, but worse at times like this. I try to hold on to the facts........

    Will be thinking of you

    Liz

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #12
    Ouch_Ouch_Ouch said:

    Yes! Put your primary doctor into the loop.

    Nicotiana's suggestion about seeing your primary doctor is an excellent one. My poor primary is the only doctor out of the loop in my cancer care. Since the specialists always forgot to include him, I periodically make an appointment to see him just to get him caught up and to show him the most recent labs, scans, etc. So, by all means, see your primary armed with all your medical results and while you're there, you could ask for a recommendation for a second opinion of any of the specialists who are not taking you seriously.

    "Abnormal liver enzymes (Alt, sgot, sgpt) might be an indication. [of cancer]" - But they are more likely to indicate other medical conditions. <http://www.mayoclinic.org/symptoms/elevated-liver-enzymes/basics/causes/sym-20050830&gt; - this doesn't appear to be an exhaustive list, either. Here's a more technical article about figuring out elevated enzymes: <http://www.medscape.com/viewarticle/756142&gt;  Elevated enzymes could be caused from something as simple as Tylenol (acetominophen). And as the 2nd article says, the lab values may not even be real. 

    Breath in, breath out!

    I can see how scared you are. This is totally normal given what you went through to treat your cancer. We all get scared about every little twinge being a  cancer recurrence. It would be good to try to get control of the worry, though. When you see your primary, be sure to tell her/him how difficult it is for you to sleep and how wound up the whole thing is making you. Perhaps the doctor will perscribe you a short term of sleeping meds and anti-anxiety meds to help you through this bumpy period. It sure will feel good to be able to sleep again!

    I won't tell you not to do browser searches for any and all explanations for the symptoms you perceive, because that would be unrealistic. I wouldn't listen to me about that, either. Just remember that until you get full explanations from your primary or specialists, you don't really know that there's anything to be worried about. Breath in, breath out! This might be a good time to explore yoga and/or meditation. If you give either a good try, they really do help you learn to calm yourself and stretch weary muscles. The first summer I took yoga 3xweek, by August, I was able to touch my toes for the first time in my life. Felt great!

    All the best, always!

     

    [Light edits - spelling & a space added between two words.] [Dang! More misspelling!]

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