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Thread: Squamous Cell LC with occult primary

  1. #111
    Experienced User
    Join Date
    Mar 2016
    The question of faith and personal beliefs is a complicated one which will be for a future post.


    Actually, there are choices about the kinds of treatment and variations in treatment. Itís not just treatment vs. no treatment.

    A couple of examples. (I know I was talking about immunotherapy before, but these are two that sprang to mind.) We are planning on chemoradiation. Chemo has been shown to make the radiation more effective. It is an adjuvant (as you know). So, if for whatever reason, I didnít want to continue with the chemo and just continue with the radiation, it is not useless. There is simply somewhat less chance that it will be effective. Note: I am not planning on this.

    Second example: I have been presented with two options for the radiation field. Will it include only the lymph node tumors (two thoracic lymph node stations)? Or will it include apparently healthy nearby nodes as well (five thoracic lymph node stations). Since my radiation oncologist presented me with the two choices, I am assuming that the former might have fewer risks of side effects (notably esophageal stricture) but also offer a lower chances for local control whereas the latter might increase the risk of side effects but also increase my chances of local control.

    So in addition to everything else, I have been mulling this over and I thought of a possible compromise. Maybe we could irradiate all 5 lymph node levels but reduce the dosage of radiation to the apparently healthy lymph nodes. I have no idea if this makes sense, but I am going to ask her about it tomorrow. Or maybe she was already planning on this but just didnít communicate it to me.

  2. #112
    Experienced User
    Join Date
    Mar 2016
    About belief and faith. I think it has been pretty much proven that one’s attitude doesn’t make chemo or radiation more or less effective. See: https://medivizor.com/blog/2015/04/3...ng-and-cancer/

    Of course, if one thinks so negatively they don’t get the treatment, well then .... you have a problem. But if you do opt for the treatment, I really don’t think you can make it work better by any kind of emotional gymnastics or positive thinking. And that’s a relief, frankly. (Do we really want to go around believing that if we think bad thoughts or the wrong thoughts we will sabotage our treatments? What a burden that would be!)

    In two of the most serious medical interventions I have experienced, my attitude had zero effect on the outcome.

    First, four years ago I was rapidly going deaf. I had already tried one medication that did not help. I really didn’t think the next medication would do anything at all (plus it had some scary side effects). My otoneurologist basically begged me to try it. My husband begged me to try it. My husband and I got into a pretty big fight over it, if I recall correctly. But I tried it under the condition that I would stop immediately if we hadn’t seen any effects in three months (the medication was supposedly to take two to three months to become effective) or as soon as there was evidence of further hearing loss. I started the medication, with quite a bad attitude I might say. But guess what? The medication started working almost right away. My otoneurologist was incredulous and thought I was imagining things. But no. When I had another hearing test two to three weeks later, there were already gains.

    So long story short, I had a really bad attitude and the medication turned out to be more effective for me than it was supposed to be even in my doctor’s rosiest scenario.

    I also have a story to the opposite effect involving surgery, but I think you get the point.

    Onto faith and beliefs.

    I have faith in my husband to support me through thick and thin.

    I have faith in my friends to be there for me to the best of their ability. Ditto for my sister and mother.

    I have faith that my oncologists, nurses and technicians are well-trained and care enough about their patients and their career to act professionally and provide the best care they can.

    I have faith that I can cope with stressful, uncertain and potentially painful situations without falling to pieces.

    I have faith that I will grieve losses that I experience and will find a way to be happy again.

    I have faith that if I am feeling stressed and confused, this will not be forever and that I will be happy and calm again.

    I have faith that I am not special by any means. The universe is neither there for me nor there against me; it arranges things neither for my benefit, nor to my detriment.

    I have faith that if I am lucky enough to be cured, one day I will go back to being annoyed about silly, trivial things like everyone else.

    I have faith that if I am not cured and I find myself dying, I will find a way to go with a modicum of grace and gratitude.

  3. #113
    Experienced User
    Join Date
    Mar 2016
    I had the simulation done today and I have an official start date of Oct. 2nd. This is for the radiation. I am getting concurrent chemo, but donít have the schedule for this yet. Hopefully Friday when I see my medical oncologist.

  4. #114
    Moderator Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    Best wishes, Melisande. You're in a new phase of your journey.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED


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