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Thread: New to Forum--Just diagnosed after surgury

  1. #21
    An update .....After seeklng 3 more opinions (all of which were contrary to the first Dr), I had a second surgery to address the issue with the unclear margins after the first surgery. This turned out to be much more involved since the original surgeon did not orient the tumor...thus leaving the 2nd surgeon(s) to have to do much more cutting to assure the margins were clear. This also involved reconstructive surgery (using a free flap) to cover a much larger area than the original surgeon.I was in the hospital for 6 days following this second surgery. Prior to the second surgery, the new surgeon scheduled me for a CT scan to see if there was any indication of lymph node involvement. There was some suspicious swelling in two of them. To be extra prudent, a partial neck dissection was done removing a number of lymph nodes on the right side. The pathology came back completely negative and free of any carcinoma. The bone area under the original tumor site also tested negative for any involvement. I'm dealing with the expected neck & shoulder discomfort from the procedure but it's certainly manageable. It appears that the tumor had not progressed beyond the original site (Retromolar Trigone). What a relief to, at least for now, know that the radiation that the original doctor wanted to do is now not needed. He never even brought up the option of a second surgery. For this particular type of tumor, radiation is not that effective and surgery is the modality. I am so glad to have sought out those other opinions...and to also have them all essentially agree on the surgical approach, as opposed to radiotherapy. I'm still extremely upset with the original surgeon for not orienting the tumor. Again, he also told me right after surgery that " we got it all". Come to find out later, the margins were never clear and he failed to orient the lesion...turning the second surgery into a very involved procedure requiring reconstructive surgery as well. I am considering consulting an attorney...explaining the facts and what all had to be done.
    Again, I'm so thankful that it appears that regular exams , are for now, all that's called for.

  2. #22
    Moderator Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    Hello, John-

    I've been thinking about you and your story, and I'm glad to hear this update from you! It sounds like the surgery, though inconvenient and with some undoubtedly short-term after-effects, will be much better for you than the radiation option. Your situation is a great case study for using your gut to seek a second (and third and fourth) opinion. That was clearly in your best interest, and your actions affirm that for the best success, patients must advocate for themselves, and take charge of their situations when they are able.

    How is the side of your face and neck feeling, following your partial dissection? Do you feel numbness? It's not uncommon, depending on where the incision is made--there are a lot of nerves in that area. It will dissipate after a while, but the payoff is certainly worth it.

    Continued best wishes for good health,

    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

  3. #23
    Hi Lou

    Appreciate the thoughts my friend!

    The neck dissection was something I was pretty concerned about (after reading various accounts others had). Actually, the surgical "scar" is healing extremely well. The incision was made right along a neck "crease" which conceals it rather well. I anticipate it will be all but invisible after a few more weeks. The lymph nodes removed were levels 1 through 4. Quite a relief when the pathology came back negative for all. I can understand why we had to do it but one can't help but hope sooner rather than later, there will be a more definitive and non surgical approach to rule out any lymph node involvement for others in the future.
    I have numbness along part of my shoulder. Also a "weakness" as well. It appears to be resolving itself..and I'm helping it along with exercises. All in all certainly not a big issue at all. The main issue continues to be the Trimus that resulted from the two surgeries. I'm making gains, slowly but surely, with the exercises as well as the tongue depressor method. When I'm "warmed up", I can achieve about 34mm of opening. The surgeon says that this will be cumulative over weeks and not days. It has been a very frustrating experience but the gains are encouraging. It's amazing how we all take a simple thing like being able to open ones mouth for granted. Again, the surgery was very involved...with a much larger area removed and of course the reconstructive procedure as well. I still have swelling on the right side from the sugery that seems to be taking awhile to resolve. I had another follow up visit this past Tuesday and the surgeon(s) seem satisfied with the progress. Next appt is April 9th. That week in the hospital was probably the most uncomfortable I had ever been in my life....two drains for the neck dissection, the NG tube (the WORST!) as well as the IV I was constantly attached to. Glad that's behind me now for sure. Yes....I felt all along, after the first surgery, that I wanted to seek out the best information available. I would certainly recommend anyone else in a similar situation do the same.

    Thanks Lou for your insight and experience. It has been quite comforting and very much appreciated. I'll post any updates and if anyone would like to hear a more detailed account of my experience, please feel free to ask.



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