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Thread: New to Forum--Just diagnosed after surgury

  1. #11
    Senior User IndyLou's Avatar
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    Thanks for the update, John...good to hear from you. Un-exciting news is always good for a cancer patient.

    About your results--I suppose it's good to know that the doctors are being thorough in their assessment. On one hand, your oncologist said that there was nothing concerning in the scan. That alone sounds good.

    As for the discrepancy, I don't know if that is cause for another concern or not. Definitely, it's something you'll want to discuss with your ENT. Did it sound as though more surgery might be needed? I guess the trade-off would have to be weighed as to what that would accomplish.

    Otherwise, it sounds like things are moving along well with you. I hope you enjoyed your Thanksgiving!
    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

  2. #12
    Thanks IndyLou

    I guess we'll address ther discrep this next week (Mnday 12/5). I've been in overdrive thinking about the RT treatments. I speak for a living and am extremely
    concerned about the stories I've heard and read about the side effects of the RT. Salivary gland destruction, amongst the most frightening. I can deal with the short term stuff , knowing that will eventually diminish. The permanant loss of those however, is extremely concerning. Is it a given that will happen? With the location of the lesion ( Retromolar Trigone). Any other methods to address preserving them? I've read about stem cells as well. Is there a treatment facility that excels in preserving this during treatments? Fortunately, I can still work where I happen to be , so geography isn't a concern. I could pretty much relocate to anywhere for a couple of months or so.

    According to the oncologist, the surgeon swears he got everything....pathology shows something different. I mean, which do you go by? I pray that another surgury isn't required, but I would imagine that I would use a different surgeon if it does?

    Thanks IndyLou

    John

  3. #13
    Senior User IndyLou's Avatar
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    Hello, John-

    As I might've said earlier, the IMRT radiation is a lot more precise to the tumor area, and therefore a lot less (permanently) damaging to other areas live salivary glands.

    It took me a good 6-9 months to heal following my RT. But I had a pretty high dose of radiation for 35 days, and the coverage was more expansive. My tumor was in a lymph node, and was considered a secondary cancer. They never did find the primary, though admitted that it may have "burned itself out." As such, they treated my entire orphyrngeal area.

    During the healing process, my voice did a lot of strange things. Based on what the ENT said, my vocal chords were inflamed. At one point, I was salivating excessively--so much so that I would occasionally gag on the amount of saliva produced. At other times, (according to a woman in my organization), I had a "deep, sexy, radio announcer voice."

    For the first year or so, it was imperative that I have a copious amount of water with any meal. Some drier foods were impossible to eat, including anything "bready." Gradually, my voice improved (I am a lector at my church), and my taste and salivary function improved. Today, better than four years out, I consider my taste and salivary function to be > 90% of what it was prior to my cancer treatment.

    For you, it sounds as though your radiation would be extremely targeted. Obviously, check with a radiologist on that. I'm not very familiar with stem cell treatments for your cancer--I don't think it's a first-line treatment.

    Again, that discrepancy from what's been communicated and the pathology deserve some very pointed questions, followed by some good answers. If the first surgeon missed something, I'd want to know why, and then what would they do differently if they had to go in a second time? Your trade-off might be: do more surgery and endure the post-operative pain and stiffness, or treat any residual cancer with radiation, and endure a potentially longer recovery time (depending on the exact RT plan.)

    I hope you get some good answers next week.

    Cheers,

    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

  4. #14
    I really appreciate you relating your experience Lou, and what I might expect. I'll certainly know more after next Tuesday's appt. and we'll go from there.
    I contacted the American Cancer Society regarding any Phase 3 trials that might apply to my situation (adjuvant therapy while preserving salivary, etc.)
    but nothing came up that looked like a good fit, but at least I'm in the database there. My concern with the radiation is that the salivary glands are "in line" with the location of the Retromolar Trigone. I'm hoping there is something that can be done to address this.

    Again Lou, It's comforting to see your response to my posts. You've been there, beat it, and now you're sharing your experience. I'll post again probably after the ENT appt. on Tuesday, Dec 5th.

    God Bless my friend.

    John

  5. #15
    I don't know what difference this makes as far as treatment options, but the diagnosis of the lesion was SC Carcinoma in situ. So if I understand correctly, the cancer really isn't even at a stage?
    Again, I have an appointment Dec 5th with the ENT/Surgeon, and then over to radiation oncology to go over the treatment timetable, measurements, etc. The dental appointment is Dec 6th to ensure that
    everything's good there. Shouldn't be an issue.

    Pardon me if I start thinking out of the box here but, proceeding onward, since the SCC Retromolar Trigone lesion was "carcinoma in situ", excised with good margins (according to the ENT, still a bit of an issue with the pathologist interp), and a clean CT scan, is there ever an accepted strategy of "wait and see"? Rather than go through the Radiation Therapy right off the bat?

    No one has suggested this but I can't help but ask.

    Appreciate your thoughts & experiences.

    John

  6. #16
    Senior User IndyLou's Avatar
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    Carcinoma in-situ (CIS), is typically classified as Stage 0 cancer. I like that you're thinking out of the box, and I can see what you're thinking. Why go through RT at all--given its potential nasty side effects--if the lesion never turns, or if it takes years to turn into a cancer?

    My radiologist, a wonderful person whom I've really got to know well since first seeing him over 4 years ago, did bring up the "wait and see" option. At the time though, I was classified as stage 2/3. My doctor said, "you do nothing for six months, but this could be really ugly by then."

    RT therapy for your CIS seems excessive. But, should they administer RT now, perhaps you can receive an abridged treatment, with less radiation, and for fewer days' treatment. That might go a long way in keeping side effects to a minimum.

    On the other hand, let's say you wait, and avoid surgery and RT. You might get lucky, and this lesion may burn itself out. You would obviously monitor it with your doctor on a regular basis. If it doesn't burn out however, and grows into a Stage 1/2 cancer, surgery and/or RT might be unavoidable. There are a lot of ifs and buts, so I can only encourage you to discuss it with your doctor so you can make an informed decision.

    Good luck, and good day.
    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. #17
    Thanks Lou. Just to recap...The lesion was removed on Oct 30, 2017 and diagnosed as SCC Retromolar Trigon. After checking yesterday with the ENT to verify the diagnosis, the lesion was 1.5 x 2.0 cm, and classified as "in situ", removed with clear margins. I guess the main concern is the recurrance of the lesion in the same place and RT is being used as adjuvant therapy. The radiation oncologist has spoken of about 6 weeks (maybe a little more) of RT. The ENT explained that this is to basically "sterilize" the area, removing any other cells remaining. He also mentioned that the RT would involve the whole head/neck/upper chest area. I'm starting to feel like this is a really aggressive approach. The CT scan after surgury showed nothing and there's no other indication of any involvement.
    I reached out to the NCI for suggestions, as well as a group called Support for People with Head & Neck Cancer (new to me). I'm contacting my insurance company to see about a second opinion. Even if they won't cover it, I will.
    I'm not saying that the doctors involved here are wrong or overly anxious to do the RT, but given the circumstances, I'd like an unbiased 2nd look at things.

  8. #18
    Senior User IndyLou's Avatar
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    Based on what you've told me, I agree--the RT seems very aggressive, especially without any further reasons to need it.

    I also agree that a second opinion should be pursued.

    Keep us posted on your progress.

    Take care, John.
    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. #19
    Update as 12/11/17

    One 2nd opinion down...two more to go. Already I'm kicking myself for not doing this sooner. Quite a difference in the approach, knowledge, etc with the facility I went to today. They're located in the DC/MD area. Extremely well known. The doctor was incredible. I had forwarded my records...labs, path, CT film, etc to their office and saw him this morning. He did a complete examination and asked many questions that I know he already knew the answer to. Without saying as much, he would have pursued a different path for the initial treatment of the SCC RMT. As I stated earlier, in the first surgery, there was a difference in the path report vs the surgeon's report. Path said margins were borderline...surgeon swore they were clear. Now with the tumor excised, there's only the path report to rely on. The new doctor today pretty much said that another surgery is needed to be sure. This one will be a bit more involved than the first since they will now have to use more of a "reconstructive" approach in the Retromolar Trigone area since the original area was excised. This might involve using tissue from my arm area, or something to that degree. A much wider excision area would also show either a clear or not so clear margin...in which case radiation might be called for anyway. The original doctor and the oncologist he's known for many, many years, never brought that up as an option. I think I'd undergo another surgery and then see if adjuvant radiation therapy is needed rather than just start it now, like the original oncologist is really anxious to do. Plus...the kicker....the new doctor today noticed something on one of the vocal cords. He didn't see it as alarming at this point but something that will be addressed with the new surgery. He also brought in a specialist who looked at it and agreed. Hopefully it can be addressed with a laser is the thinking (of course pending the biopsy).
    My first ENT guy totally missed that when he scoped everything.

    Frustrated and somewhat baffled as to the actions of the first surgeon and oncologist. Kinda like...this way or the highway...no other options....or at least that's how I felt about it.

    Tomorrow headed to NC for the third opinion. Also a very well respected facility and staff.

    Any thoughts, comments are really welcome. My mind is working in overdrive.

    Thanks everyone.

    John

  10. #20
    Senior User IndyLou's Avatar
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    Frustrated and somewhat baffled as to the actions of the first surgeon and oncologist. Kinda like...this way or the highway...no other options....or at least that's how I felt about it.
    Hi, John-

    The above reminds me of the say, "when all you've got is a hammer, EVERY problem looks like a nail!"

    It's very difficult as cancer patients to know what questions to ask, and even more difficult to know if the answers we receive are the best ones. We might assume every doctor is telling the truth, or that every doctor is a liar. I don't believe most of them are liars, but some may be more limited in their knowledge and experience with a specific cancer. It's very difficult to say what happened with your first experience.

    I am personally relieved that you feel empowered by your experience, and that you're seeking multiple opinions, rather than simply accept the first advice you received. You were put in a corner by your first oncologist though, and you were facing some challenging outcomes. I'm glad that you sought additional advice, and hoping that it gives you better options for completing your treatment.
    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

 

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