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Thread: New to Forum--Just diagnosed after surgury

  1. #1

    New to Forum--Just diagnosed after surgury

    Hello all

    After an avaluation by my ENT, an excision of a Retromolar lesion (tri area) was done and pathology confirmed it malignant. The lesion had not spread and he had a good margin around it.
    Of course, now we're discussing the follow up Radiation treatment with an oncologist. The regimen hasn't been set yet, but it appears it would be 5-6 weeks, 5 days a week.
    I'm concerned with this area to be treated that I'll lose function in the salivary glands. Is it a given that they will no longer function after the treatments? Or does some of the function return? I've had "grand central mind" after the diagnosis and am looking to see if anyone here has had this type of cancer and how the post op treatements went. ANY advice is welcome.

    Thanks

    John

  2. #2
    Senior User IndyLou's Avatar
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    Hello, John-

    I'm sorry to hear of your news, but you will find great resources and support within this forum. It sounds like you caught this early, and many types of head and neck cancers are effectively treated to cure. I have a few questions, to better understand your situation, if you don't mind.

    Would you mind sharing your age and general health? Can you tell me what type of cancer was your diagnosis? I'm betting that it was some form of squamous cell carcinoma, but I'd like you to confirm. Did they say what caused the cancer--perhaps smoking, drinking, HPV, or something else? Are you a smoker, heavy drinker, or user of chewing tobacco?

    The radiation often used for these types of cancers is called intensity-modulated radiation therapy, or IMRT. This is a highly-focused radiation treatment, where the beam is controlled over 360 degrees around your head. It's very precise, unlike treatments of old, where the entire area was irradiated. The good news with this type of treatment is that the salivary function might initially be stunted in the short-term, but you will gradually see a return to normal. Your salivary function should continue to improve, even over the next several years following treatment.

    Every cancer patient is different, so how your body responds may be slightly different than another patient. That said, radiation is initially very harsh on the body, particularly in the mouth and neck areas. The inside of your mouth may become inflamed and reddened; it may become difficult to swallow, and you will likely need opioid medicines to combat the pain. you may develop oral mucositis, and your taste may be affected, perhaps even for months afterwards. You may develop dysphagia, or a difficulty in swallowing. All of these things can be managed, and over 6-12 months and even longer, your ability to taste and swallow will improve.

    I had a bad case of mucositis, that developed about 3 weeks into my radiation treatments, and didn't subside until well after the treatments had ended. I had a feeding tube, but lost over 20 pounds because I simply couldn't eat while receiving radiation. Even after my treatments ended, my tongue and mouth were inflamed and raw. I had little tolerance for the tastes of foods, even bland ones. Carbonated drinks were out, even drinks with extreme temperature variations--too hot or too cold--I couldn't tolerate. It stands to reason that foods with any kind of spiciness were impossible to eat and enjoy. Actually, eating was no longer an enjoyment.

    There have been some newer studies, particularly with HPV+ SCC patients, that indicate a lesser treatment window with radiation might be possible, and yet still effective. This greatly reduces the short-term effects of radiation. At the end of the day however, what are you going to do, what options do you have? You can put off treatment of course, but your cancer will likely spread. You could ask about a surgical approach, but that may cause disfigurement; they might also miss some of the cancer, even with good margins.

    I do wish you well, John. You have a good prognosis ahead of you, but in the short term, it's not especially pleasant being a cancer patient. Please let me know if you have other questions, or would like to discuss treatment options.

    Best wishes.
    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

  3. #3
    IndyLou

    Thanks much for your response. In a nutshell, I'm a 63 year old male, history of smoking (light/moderate alcohol use). General health is very good. No other issues (normal BP, xrays, blood woork, etc.). I've been pretty active and have not had any other health related issues of note. (I do have Hydrocele surgury scheduled soon however. That was checked and it's a simple fluid buildup after ultrasound and Urologist consult) As I undertsand it, the diagnosis is SCC (retromolar trigone). I have a CT (PET)? scan scheduled in a few days. The surgeon and the oncologist are extremely helpful and informative. I have total confidence in them. We have yet to schedule any radiation treatments...I guess pending scan results and other consultations. My understanding is that even with the malignancy excised, with no sign of migration into any surrounding areas, that the radiation therapy is mainly to kill and other cancer cells that may have migrated from the initial area? Will the scan show any sign of any cancer migration? I've asked these questions of the doctors but I swear....I guess I wasn't totally focused on what they were saying. There is no communication issue...just me not focused! I will be this week however. This is just now all kinda sinking in I guess. The surgury to remove the lesion went well and as I mentioned in the first post, there were clear margins and no sign of any intrusion into the surrounding area. I'm still experiencing Trismus from the surgury two weeks ago. It is getting a little better, but still can't open my mouth very wide. I've been doing some of the exercises and "working the area" until it becomes painful to do so. I'm hoping that this will resolve after awhile?

    Again, I appreciate you taking the time to respond to a "newbie" with this and I'd love to hear any other thoughts you have regarding this.

    Thanks You!

    John in Fla

  4. #4
    Senior User IndyLou's Avatar
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    Hi, John--

    Thanks for filling me in on your situation. I think I understand a little better, what you're facing. A couple things.

    It sounds as they want to use adjunct radiotherapy to wipe out any stray cancer cells that might be beyond the margins. They may apply a lower dose of radiation, which may help with any recovery, but if you get to that step, be sure to discuss more with the radiologist.

    The CT-PET scan will be painless from your perspective, though you may experience a little anxiety in the enclosed space. I didn't find the PET scan nearly as confining...it was almost relaxing!

    Anyway, the PET uses a glucose fluid (which accumulates near rapidly-growing cells like cancers). If a cancer has spread, it's sometimes detectable on the PET scan. This technology is a reasonable detection, but it can cause some false readings.

    You sound like you're in decent shape, but those doctor visits are a challenge for many. If you have a spouse or a friend that can come along, they can help you remember things. There's a lot of information, that's for sure.

    Another good idea is to start a notebook. Write things down, including any questions you think about between visits.

    I'm happy to help as much as I can...dont hesitate to ask any questions you may have!
    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

  5. #5
    IndyLou

    Your insight and experience are a huge help. I will post more as we progress through the process. My view (and I'm sticking to it!) is that the surgeon removed the lesion, got it all, and the radiation is a "just to make sure" follow up. If I can conceptualize it that way, hopefully it'll allow me to focus directly, rather than get the "Grand Central mind" syndrome.

    A heartfelt thanks!

    John

  6. #6
    Senior User IndyLou's Avatar
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    Quote Originally Posted by John_in_Florida View Post
    IndyLou

    ... My view (and I'm sticking to it!) is that the surgeon removed the lesion, got it all, and the radiation is a "just to make sure" follow up. If I can conceptualize it that way, hopefully it'll allow me to focus directly, rather than get the "Grand Central mind" syndrome.
    That's certainly the way I would describe it, John. Conceptually, that's exactly what they'd be doing.

    Good luck with your upcoming scan--let me know what you think of it. If your doc does suggest radiation, we can talk a bit more about what to expect there, but otherwise, it sounds as though things are going well.

    Best wishes,

    Lou
    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

  7. #7
    IndyLou

    By the way, congrats on your progress as well.

    PET scan scheduled for this Monday 11/20 early morning. I guess we look at the results and go from there. Not sure how long a review of the results takes but I'll post here as soon as I know.

    Thanks again.

    John

  8. #8
    Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    Location
    Indiana
    Posts
    247
    John-

    FYI-usually, the PET scans are administered by radiology technicians. They're not allowed to give any diagnostic information to the patient, so you'll likely have to wait until your follow-up doctor's appointment. That could be up to a week, or longer, depending on what the results are.

    You should also be given some instructions prior to the PET scan...I think they want you to fast for x number of hours, but drink lots of water prior, and afterwards, to flush the IV contents.

    As I hinted earlier, I thought the CT-PET scans were actually somewhat relaxing. They weren't nearly as enclosed as the IMRT radiation machine!

    Have a great weekend!
    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

  9. #9
    With everything going on, I thought it was a PET scan but it is a CT scan instead. Still scheduled for this Monday. I checked to see what prep was needed for the appt and they indeed told me it's a CT scan and not a PET scan. I was speaking with the oncologist last week and we discussed both types but I must have misunderstood what he said. Anyway, I think I have it straight now!

 

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