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Thread: Squamous Cell LC with occult primary

  1. #151
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014
    Posts
    520
    Hello, Melisande-

    You say your doctor is "leaning against" immunotherapy, which if you described accurately, sounds as though the doctor could be persuaded otherwise. I don't know much about autoimmune tests or how to interpret them, so I can't offer anything to what you already said.

    What's the big picture here? How have the chemo and radiation therapy performed? Are you considered NED yet? Is the immunotherapy even necessary at this point? I would give the doctor the benefit of the doubt with respect to your blood tests. Perhaps they see something that concerns them, a reason for not wanting to strongly pursue immunotherapy? Based on what I read from the NCI, radiochemotherapy + immunotherapy is an option for treating stage III NSCLC, but it isn't the only option, nor is it considered the SOC.

    If it were me, I would wait for my appointment later this month, and have the conversation with my oncologist at that time. Between now and then, enjoy the fact that the chemo and radiation appeared to have done a good job, and take time to prepare your line of questions for the discussion on the 27th.
    Age 54 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

  2. #152
    Senior User
    Join Date
    Mar 2016
    Posts
    100
    Hi IndyLou,

    Well, that is exactly the answer I actually wanted to hear. I think it makes sense. I find the psychology of cancer treatment really interesting. At the beginning of all this I didn’t even want to do chemoradiation which definitely is the SOC. But now that I have done that and come through it well, it’s almost as if I now have a new identity of “successful cancer patient taking action and coping well with treatment” that I don’t want to shed right away.

    However, this morning I woke up feeling like I could actually see skipping immunotherapy or post-poning it for a long time depending on what the scans look like and what my oncologists say.

    It’s funny my attitude shifted so quickly about this.

    Tomorrow I will be meeting with the local oncologist— the one who would not hesitate to give me the immunotherapy. I am trying to think up good questions to ask.

    One of the things that perturbed me a little after my initial consultation with this local oncologist was the difference between how I felt about immunotherapy in his office vs. what I found out later when I did my own follow-up research at home.

    He made it sound like the patient who “responded” to the therapy was cured (not true), that because my tumors had high PD-L1 expression I would necessarily respond to the immunotherapy (not true — patient with higher PD-L1 were somewhat more likely to respond, but there was a lot of overlap with those whose tumors expressed PD-L1 at a lower rate), if there were autoimmune-related side effects, they could be easily dealt with with steroids (usually, but not always).

    If indeed the Moffitt oncologist winds up not recommending the immunotherapy and I agree with him, then I will also have to deal with family members (husband, sister & Mom) who want me to do everything possible to survive. They are not saying this officially. Officially it is “whatever you decide, we’ll support,” but I can just tell what they are really thinking (body language, tone, silences, sighs, smiles, excitement or lack thereof etc.) But I suppose I’ll just deal with this when I come to make the decision.

  3. #153
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014
    Posts
    520
    that is exactly the answer I actually wanted to hear. I think it makes sense.

    I'm glad that I could provide you with a useful answer!

    There is definitely a psychology behind cancer, in general. It has its own mystique for non-patients, and for patients, the psychological drama never ends. Grief, anxiety, impatience, sorrow, joy, happiness, loss...we live with contradiction all the time.

    We've said it before, there are few guarantees when treating cancer. You make the best decisions with the information you have--whether about the disease state, available treatments, and potential outcomes--and you live another day. Even with seemingly great results, there's always that seed of doubt in the back of your mind--if the conditions were right for my first cancer, could they be right a second time? There's no good that comes from worrying about that.

    Your family clearly means well, but YOU are the only person that needs to be convinced of your treatment decision. You always have the final vote, the final say. No other proof or evidence is required.
    Age 54 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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