pathology report-dissapointment again-update, mistake about positive margins

joannaw81
joannaw81 Member Posts: 185 Member
edited March 2012 in Head and Neck Cancer #1
hi everyone, it's paintful to write the reality but it also helps me as I can put down what I'm feeling, so here it is: pathology report came back and the margin from the tongue was NOT negative. Tomorrow we are going to the radiation doctor to see what he thinks, wheather or not mom can have radiation again. She finished first time 2/17/11. I know some of you had radiation twice but I think the time in between was much longer, how soon can you have radiation again? another question is how much radiation did she actually get the first time on her tongue (first time it was tonsil), can she get anymore? In addition only one of the lymph nodes was positive for cancer out of threee examined, here is another question: why did the doctor remove only 3 lymph nodes, first time on the left side I think he removed 15 of them. the worse thing is that the doctor didn't even call me to discuss the results. The receptionist called and said to pick up the copy of the report, so I went and waited to talk to him but he said that he will call later since he is very busy and we didn't have an appointment, he never called. On the other hand mom feels better, it turns out that although she has pain she can still move and raise her hand which is a good thing I guess. She is almost fully recovered. So many questions, so many fears, so much pain. what do we do now???? what is the next step? what if she cannot get anymore radiation....I'm slowly loosing hope. I will keep you posted tomorrow after the appointment with radiation doctor.
PS: my mom doesn't speak english so I am always the translator for her. I decided not to tell her everything and what the prognosis is. I don't want her to get depressed and live in fear. In fact I'm the only person in the whole family that knows the truth and the facts. Is that ok? as always thank you for being here and all your answers, all of you are truly supportive.

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    Brachytherapy
    comes to mind. Hi Joanna, sorry to hear of the pathology report. When I was going through treatment I met a fellow who was in the same situation as your mother and was being treated with brachytherapy and is doing well today. You will want to ask if this is an option for your mom and yes it can be administered even if she had previous radiation. It's localized radiation, usually referred to as "Seeds" which release the radiation to the surrounding area. It's a common type in prostrate cancer but as I said it can be used in this situation.

    From reading your post it sounds like she had a neck dissection on both sides. The reason for the difference in lymph nodes removed can be that one side was the primary side measured from the mid line of the tongue. Is that the side where the majority of nodes were removed? if so it's fairly typical as the incidence of spread on that side was higher??? take a step backward and breath as there are still options available.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    I don't want to second guess you
    regarding your mom. You may have valid reasons to withhold this vital information from her, but I have to say, those reasons would have to be good ones. Otherwise, it is my opinion that this is her disease, and she has an absolute right to know. The hole you dig by withholding this is going to get very deep, very fast. there are more conversations coming soon, that are vital to her interests, and will force healthcare providers to disclose this information to her, despite your wishes.

    Ratface raises a good point. There is a thread on the next page started by Marty36 that hou should read as well, regarding cyberknife therapy.

    best

    pat
  • joannaw81
    joannaw81 Member Posts: 185 Member
    #4
    longtermsurvivor said:

    I don't want to second guess you
    regarding your mom. You may have valid reasons to withhold this vital information from her, but I have to say, those reasons would have to be good ones. Otherwise, it is my opinion that this is her disease, and she has an absolute right to know. The hole you dig by withholding this is going to get very deep, very fast. there are more conversations coming soon, that are vital to her interests, and will force healthcare providers to disclose this information to her, despite your wishes.

    Ratface raises a good point. There is a thread on the next page started by Marty36 that hou should read as well, regarding cyberknife therapy.

    best

    pat

    better day today
    hi everyone, so I have to admit that I was wrong a little about the positive margins, on the report (which I read on my own without speaking with the surgent)- it said that margins cannot be assessed and I thought it ment that they were not able to get any negative margins. After speaking with the radiation doctor today he explained that the report did not say that the margins were positive, it said that they cannot be clearly seen due to the submission in very small pieces. After retreaving the complete surgery report he said that it looks like all the tumor was removed however due to high risk and passed history he reffered us to another doctor which we will consult to see if mom can get the brachytherapy. I must say that I will never play doctor again and try to diagnose on my own. I'm also shocked how much information all of you have, first thing the doctor said was the brachytherapy, exactly what your suggestions were.
    Thank you and I will keep you posted.

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