crazy question

Denise1966
Denise1966 Member Posts: 90
edited March 2014 in Colorectal Cancer #1
I have one question that has been haunting me from my colonoscopy biopsy. They took five samples one came back necrotic, three came back with high grade dysplasia and the last one was worrisome for invasive carcinoma. I know they are doing the chemo/rad to shrink the tumor for the surgery, but was everyone elses biopsy conclusive or was it as vague as mine? When they did the endoscopic ultrasound they told me the tumor got through the wall and that there were 2 very small lymph nodes. Based on the biopsy is this definitely cancer? They did not biopsy the lymph nodes. Shouldn't they be swollen if affected? I know that I'm a week into my treatment already, but I can't get this off of my mind. My husband tells me to drop it, that I have to have this chemo/rad for the shrinkage since the tumor is 10 cm in my rectum and the doc doesn't think I'll need a colostomy if it shrinks enough. The drs. also tell me that they treat it like cancer until proven otherwise.

Can anyone share their colonoscopy biopsy experience with me, so I can move on and get this out of my mind. Thanks you so very much!

I know I'm rambling, but this question will not get out of my head!! Thanks again.

Comments

  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #2
    The doc would have done a biopsy during the colonoscopy. Ask for him/her to explain it to you and ask for a copy of the pathology report. When I had my endoscopic ultrasound done there also were 2 questionable lymph nodes. They cannot be biopsied until the surgery. They are on the outside of the colon. My surgery showed cancer in 2 lymph nodes, but it had not gone through the wall. It was a T2N1 rectal. Your actual staging is not done until the surgery, thats when the lymph nodes are removed and examined.

    I hope that helps.

    They would not be giving you chemo and radiation without a known cancer diagnosis.

    Maureen
  • Denise1966
    Denise1966 Member Posts: 90
    #3
    Moesimo said:

    The doc would have done a biopsy during the colonoscopy. Ask for him/her to explain it to you and ask for a copy of the pathology report. When I had my endoscopic ultrasound done there also were 2 questionable lymph nodes. They cannot be biopsied until the surgery. They are on the outside of the colon. My surgery showed cancer in 2 lymph nodes, but it had not gone through the wall. It was a T2N1 rectal. Your actual staging is not done until the surgery, thats when the lymph nodes are removed and examined.

    I hope that helps.

    They would not be giving you chemo and radiation without a known cancer diagnosis.

    Maureen

    Maureen,

    Thanks for the answer. I do have the pathology report and those were the findings that I listed in my question. That's where my issue comes in. Are the words worrisome and suspicious enough for them to make the assumption? When I spoke with the doc who did the colonoscopy, when he got the biopsy back he told me probably stage 1, then after the endo ultrasound they told me possible stage 3. I know they can't stage til after surgery, but I think I could handle everything better if it had not stated worrisome or suspicious and definitely gave me an answer.

    See this is why my dear hubby tells me to drop it.....
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
    Sounds familiar. I was stage III rectal. 2" tumor, first rectal fold. One lymph node looking 'interested' (I kid you not) got me there. The pathology was so questionable, it was sent to USC to the guy that wrote the book on pathology...lol...and he confirmed. Mine was squamous cell carcinoma. This is usually anal cancer, not rectal. And it was on the OUTSIDE of the rectum, growing IN (sigh, can't even get cancer right!!!). Fears were that it had involved the abdominal wall, and my uterus. Neither was the case.
    Chemo/radiation to shrink the tumor actually eliminated it...when I had my surgery that removed my rectum and sig colon, none of the tissue had any cancer left...

    What kind of cancer (adenocarcinoma? squamous cell?) did they say you might 'have'?

    Hugs, Kathi
  • Denise1966
    Denise1966 Member Posts: 90
    #5
    KathiM said:

    Sounds familiar. I was stage III rectal. 2" tumor, first rectal fold. One lymph node looking 'interested' (I kid you not) got me there. The pathology was so questionable, it was sent to USC to the guy that wrote the book on pathology...lol...and he confirmed. Mine was squamous cell carcinoma. This is usually anal cancer, not rectal. And it was on the OUTSIDE of the rectum, growing IN (sigh, can't even get cancer right!!!). Fears were that it had involved the abdominal wall, and my uterus. Neither was the case.
    Chemo/radiation to shrink the tumor actually eliminated it...when I had my surgery that removed my rectum and sig colon, none of the tissue had any cancer left...

    What kind of cancer (adenocarcinoma? squamous cell?) did they say you might 'have'?

    Hugs, Kathi

    Kathi,

    Thanks for your answer. They never told me what type of cancer, since the biopsy only stated the following:
    adenomatous fragments with high grade dysplasia
    seperate small fragment suspicious for invasive carcinoma
    seperate fragment of completely necrotic tissue also present.

    When did they tell you what type of cancer it was?

    Hopefully all the chemo/rads can shrink this thing too!!!Would be great!!!!
  • TY2HC
    TY2HC Member Posts: 46
    #6
    When they found my Cancer it was in a polyp. And the tumor within the polyp had moved into the stalk of the polyp. They sent the polyp off for testing after they took it out and found that it was Cancerous. Recently, I had 2 more polyps found and one of them had dysplasia. Again, they were sent out for biopsies.

    What helped me cope with the news, was taking the stance "it is what it is". It helped to put my mind at ease and then I was able to take a step back and plan for what was to come. I only needed to have surgery to take care of my Cancer.

    The good news is it is beatable, but you have to not let it consume you. I wish you all the best! Stay strong!
  • claud1951
    claud1951 Member Posts: 424 Member
    #7
    Hi Denise,
    I was told that I had adenocarcinoma after the colonoscopy (or I should say after the results came back from the lab).

    Then it was off to surgery and that is when they told me what stage it was (stage 3) and that the tumor had NOT gone through the muscle wall.

    I had 2 out of 28 lymph nodes that were cancer and the pathology report was very clear on that.

    Whew..was lucky on that one. I think it would drive me crazy wondering why didn't they just say this or that.

    You keep up your great attitude. You know what? you sound like me! Ha. and now I am NED!!

    Thinking of you
    Claudia
  • KathiM
    KathiM Member Posts: 8,028 Member
    #8
    Denise1966 said:

    Kathi,

    Thanks for your answer. They never told me what type of cancer, since the biopsy only stated the following:
    adenomatous fragments with high grade dysplasia
    seperate small fragment suspicious for invasive carcinoma
    seperate fragment of completely necrotic tissue also present.

    When did they tell you what type of cancer it was?

    Hopefully all the chemo/rads can shrink this thing too!!!Would be great!!!!

    After the colonoscopy. Actually, I sat down with my lab report, called 1-800-ACS-2345, and asked to have someone interpret it with me....it was a BIG HELP!!!

    I called a pathologist friend of mine, read to him what you replied, and he said "Well, I can't be complete without the op report, where did they find these things, but, it sounds like what they are doing for treatment is correct."

    I hope this helps, think about calling ACS (American Cancer Society), they are very helpful and really put my mind at ease!

    Hugs, kathi
  • Denise1966
    Denise1966 Member Posts: 90
    #9
    KathiM said:

    After the colonoscopy. Actually, I sat down with my lab report, called 1-800-ACS-2345, and asked to have someone interpret it with me....it was a BIG HELP!!!

    I called a pathologist friend of mine, read to him what you replied, and he said "Well, I can't be complete without the op report, where did they find these things, but, it sounds like what they are doing for treatment is correct."

    I hope this helps, think about calling ACS (American Cancer Society), they are very helpful and really put my mind at ease!

    Hugs, kathi

    Kathi,

    Thanks for the suggestion. I will call and see if they can interpret for me.

    That was VERY sweet to call your friend for me, I really appreciate that!

    I hope you have a great weekend! I will try, since I get my buddy (the pump) back on monday.

    Denise
  • pamness
    pamness Member Posts: 524 Member
    #10
    My cancer was diagnosed when they found a polyp during a routine colonoscopy. The doctor waited until I was awake and told me he was sure it was cancer. They sent it out for biopsy and indeed it was adneocarcinoma - l look at that as garden variety colon cancer. The scheduled me for surgery, did an MRI and CAT scan which were clear. They expected a diagnoses of Stage 1 - mine had not gone through the outer wall of my colon. Much to my surprise and everyone elses I had two out of 20 some odd positive lymph nodes - the two closest ones actually. I took this as good news. I would agree that they would not be doing chemo and radiation to shrink a tumor that they did not believe was cancer. Can you talk to your doctors again. My lymph nodes were not swollen at all. They cannot biopsy them until surgery.
    Keep a postive attitude, your first week sounds like it went very well. Hopefully things will go well for you. You will get some definitive answers soon. Are being treated at a major medical center - teaching hospital? I live it boston so I was probably lucky, answers were pretty easy to get.

    Pam

    All my best.

    Pam
  • kristasplace
    kristasplace Member Posts: 957 Member
    #11
    Hi again, Denise! I don't blame you at all for feeling like you don't understand what's going on. I would feel the same way. I'm very curious about what they mean by 'dysplasia', and i would want an answer as to WHY there is necrotic tissue? Does that mean you have some sort of tissue killing disease other than cancer?? It does sound like they probably found some adenocarcinoma which is the most common type of cancer in the colon, but i don't understand why someone hasn't come out and said it. It's almost like they did a "half ****" pathology, or no pathology at all, just a visual guess. On my first meeting with my onc he explained exactly what i had, where it was, and what he was going to do about it.

    I'm being treated at UCSD which is supposedly the best place in the world for cancer treatment. It's almost an hour away from me, but it's worth it to get the best care. Do you have an option about where you can get treatment?

    Many hugs,
    Krista
  • vinny3
    vinny3 Member Posts: 928 Member
    #12
    Did they say how big the tumor itself was? It sounds like they definitely think it is cancer but, for some reason, don't want to just say that. A spot may become necrotic just because it outgrows the blood supply to that area. If they thought it might not be cancer I would think they would just do the surgery. At 10 cm up the rectum they have a good chance of removing the tumor and reconnecting you.

    Hope the chemo/radiation and surgery go well for you. Keep us informed.

    ****

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