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Thread: Partner with SCC, no treatment

  1. #31
    Moderator Top User IndyLou's Avatar
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    Quote Originally Posted by olwen View Post
    The first thing I intend to ask is if we do nothing what we can expect. From there I can find out whether perhaps no treatment might be preferable to treatment. I've looked for info on how these things progress and haven't found what I'm looking for.

    I have half a mind to sell the house, and buy a motorhome. Then being cashed up we could visit friends and family round the country, places we've been to years ago and not revisited and places we always hoped to visit. But then we might be missing out on proper care.
    According to my radiologist, "doing nothing" is certainly an option...the results may not be pretty, but doing nothing is always an option. If indeed the SCC has metastasized, I'm not sure they can give you exact timing of things if left untreated. It may sound appealing, to just liquidate and go off exploring. That option is probably best left in your back pocket. I still believe that Fred's cancer can be treated and knocked down enough to give him many quality years left, but that's up to you, him and his doctor.

    I also think that effective treatment depends on the patient (their general health, their mental state, etc.), and factors in their caregivers. You should definitely ask about side effects of any proposed treatment, and the oncologist's confidence in mitigating them. If radiation of the head and neck region is performed, it could affect the patient's ability to eat, and weight loss is not uncommon. Ask about nutrition; i.e., how would Fred maintain his nutrition intake?

    You're making some progress. I hope Monday's appointment gives you some hope.
    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. #32
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    The decision at the moment is to do nothing and check after a few months. It WILL progress, we just have no idea how fast.
    Partner to Fred b April, 47 (COPD, ex smoker, osteoporosis, fairly high alcohol use)

    1. Complete excision 20x20 ulcerated left posterior tongue base lesion biopsy proven well differentiated SCC (p16 negative) 1/12/2015
    2 Re-excision similar area 29/1/2016 scar tissue with no evidence of dysplasia, SCC in-situ or invasive SCC
    3 CT scan at time no metastatic disease
    4 Left posterior triangle small firm query metastasise
    5 CT scan neck/thorax 28/6/2016 multiple left cervical, bilateral supraclavicular and mediastinal nodes ? pulmonary metastasis
    6 FNA left neck nodes malignant squamous epithelial cells consistent with metastatic SCC

  3. #33
    Moderator Top User IndyLou's Avatar
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    Hello, olwen. I'm sorry to hear they're not trying to do more. Is there a specific date you have for a future follow-up, or is there some kind of event that must happen before they see Fred again? Does he have any sort of medication that he can take?

    I wish you as happy and peaceful time as you can have. Perhaps liquidating and doing something enjoyable is now in order.
    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

  4. #34
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    Quote Originally Posted by IndyLou View Post
    Hello, olwen. I'm sorry to hear they're not trying to do more. Is there a specific date you have for a future follow-up, or is there some kind of event that must happen before they see Fred again? Does he have any sort of medication that he can take?

    I wish you as happy and peaceful time as you can have. Perhaps liquidating and doing something enjoyable is now in order.
    There's an ENT appointment for September 1, and an oncology one for October 18. Probably a scan before the oncology one. I can contact the oncology nurse if there are changes in the interim for an earlier appointment. They might do chemo or remove lumps if they become uncomfortable. At the moment no node is bigger than 1 cm, and I don't think the ones in the neck have changed since Fred found them, and they are not sore or anything. I guess it's wishful thinking to think they will stay that way.

    I am far more worried than Fred is. All the reading I've done tells me that this can get nasty. Fred, and his mother don't want Fred's daughter in London to know all the details. There's no point in her spending money she doesn't have to come to New Zealand. Fred's mother went through the blitz in London and has a stoicism from that era. I need to talk to the cancer society, but we generally do very little apart, and Fred doesn't want to do that sort of thing.
    Partner to Fred b April, 47 (COPD, ex smoker, osteoporosis, fairly high alcohol use)

    1. Complete excision 20x20 ulcerated left posterior tongue base lesion biopsy proven well differentiated SCC (p16 negative) 1/12/2015
    2 Re-excision similar area 29/1/2016 scar tissue with no evidence of dysplasia, SCC in-situ or invasive SCC
    3 CT scan at time no metastatic disease
    4 Left posterior triangle small firm query metastasise
    5 CT scan neck/thorax 28/6/2016 multiple left cervical, bilateral supraclavicular and mediastinal nodes ? pulmonary metastasis
    6 FNA left neck nodes malignant squamous epithelial cells consistent with metastatic SCC

  5. #35
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    I had sent an email to an Auckland clinic and thought it was being ignored, but had a phone call yesterday. Mr Patel will review Fred's case. http://www.ahns.co.nz/surgeons/rajan-patel/ He is going to request the scans.
    Partner to Fred b April, 47 (COPD, ex smoker, osteoporosis, fairly high alcohol use)

    1. Complete excision 20x20 ulcerated left posterior tongue base lesion biopsy proven well differentiated SCC (p16 negative) 1/12/2015
    2 Re-excision similar area 29/1/2016 scar tissue with no evidence of dysplasia, SCC in-situ or invasive SCC
    3 CT scan at time no metastatic disease
    4 Left posterior triangle small firm query metastasise
    5 CT scan neck/thorax 28/6/2016 multiple left cervical, bilateral supraclavicular and mediastinal nodes ? pulmonary metastasis
    6 FNA left neck nodes malignant squamous epithelial cells consistent with metastatic SCC

  6. #36
    Moderator Top User IndyLou's Avatar
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    That sounds like progress, olwen...do you know when you might hear back from Dr. Patel?
    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

  7. #37
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    They have to request scans. I'm picking a couple of weeks.
    Partner to Fred b April, 47 (COPD, ex smoker, osteoporosis, fairly high alcohol use)

    1. Complete excision 20x20 ulcerated left posterior tongue base lesion biopsy proven well differentiated SCC (p16 negative) 1/12/2015
    2 Re-excision similar area 29/1/2016 scar tissue with no evidence of dysplasia, SCC in-situ or invasive SCC
    3 CT scan at time no metastatic disease
    4 Left posterior triangle small firm query metastasise
    5 CT scan neck/thorax 28/6/2016 multiple left cervical, bilateral supraclavicular and mediastinal nodes ? pulmonary metastasis
    6 FNA left neck nodes malignant squamous epithelial cells consistent with metastatic SCC

  8. #38
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    I had a call the other day saying Fred's scans had been reviewed and that I should expect some sort of communication, yesterday we saw the ENT surgeon for a followup.. He had had a call from the Auckland man, but didn't know what it was about and had not got round to calling back. Today I got an email from Auckland. They recommend a palliative course of radiation and chemotherapy. It was not copied to oncology so I sent it to the oncology nurse who will pass it on to the oncologist. Then we'll see what they say.
    Partner to Fred b April, 47 (COPD, ex smoker, osteoporosis, fairly high alcohol use)

    1. Complete excision 20x20 ulcerated left posterior tongue base lesion biopsy proven well differentiated SCC (p16 negative) 1/12/2015
    2 Re-excision similar area 29/1/2016 scar tissue with no evidence of dysplasia, SCC in-situ or invasive SCC
    3 CT scan at time no metastatic disease
    4 Left posterior triangle small firm query metastasise
    5 CT scan neck/thorax 28/6/2016 multiple left cervical, bilateral supraclavicular and mediastinal nodes ? pulmonary metastasis
    6 FNA left neck nodes malignant squamous epithelial cells consistent with metastatic SCC

  9. #39
    Moderator Top User IndyLou's Avatar
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    I had been thinking about you and Fred, olwen, and wondering how things were progressing. I hope you get to an oncologist soon, and more importantly, I hope that Fred can begin his treatments. It still seems like there's a lot of passing information along from one office to another, so when treatments begin, hopefully, the oncologist's office can handle everything through them.

    Take care, and please keep us posted on your progress.
    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

  10. #40
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    Quote Originally Posted by IndyLou View Post
    I had been thinking about you and Fred, olwen, and wondering how things were progressing. I hope you get to an oncologist soon, and more importantly, I hope that Fred can begin his treatments. It still seems like there's a lot of passing information along from one office to another, so when treatments begin, hopefully, the oncologist's office can handle everything through them.

    Take care, and please keep us posted on your progress.
    The chemo recommended was cisplatin and cetuximab. Cetuximab isn't funded grrr.... It was recommended for funding with high priority in Feb 2014. There are patient specific routes. But we'll see if the professionals think it's worthwhile and are prepared to pursue it. Fred had a new CT scan today and should see the oncologist next week.

    I also was wondering if stainless steel rods in his spine make chest radiation awkward.
    Last edited by olwen; 10-11-2016 at 10:42 AM.
    Partner to Fred b April, 47 (COPD, ex smoker, osteoporosis, fairly high alcohol use)

    1. Complete excision 20x20 ulcerated left posterior tongue base lesion biopsy proven well differentiated SCC (p16 negative) 1/12/2015
    2 Re-excision similar area 29/1/2016 scar tissue with no evidence of dysplasia, SCC in-situ or invasive SCC
    3 CT scan at time no metastatic disease
    4 Left posterior triangle small firm query metastasise
    5 CT scan neck/thorax 28/6/2016 multiple left cervical, bilateral supraclavicular and mediastinal nodes ? pulmonary metastasis
    6 FNA left neck nodes malignant squamous epithelial cells consistent with metastatic SCC

 

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