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Thread: Partner with SCC, no treatment

  1. #1
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    Partner with SCC, no treatment

    In December my partner (man in late 60s) had a lesion removed from his tongue. It was quite small and identified as squamous cell carcinoma. They said it was all removed but they would prefer a bigger margin so they did a resection in January. We were told that no lymph nodes were involved. Then a few months later he noticed a small lump in his neck and showed it to the surgeon at a follow-up appointment. They did another CT scan and fine needle aspiration and referred him to a larger hospital, where we had to go for a multi disciplinary meeting (a 300 km drive away BTW). We waited, and waited, and waited, and were then told it was in several places and he would be referred back to the General Practitioner for palliative care. He doesn't feel ill from this (but does have COPD). No indication of what to expect from now although we were told chemo might be offered but that it would be unlikely to help;

    Just so confused about this.

  2. #2
    Moderator Senior User IndyLou's Avatar
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    It does not sound like your medical doctors are advising you with all the information. It's good that they detected the cancer on the tongue and removed it, but the fact that now there's a lump in the neck suggests a metastatic tumor. You need to press for the results from the FNA biopsy, and I would also suggest a CT-PET scan, to determine if the cancer has spread elsewhere in the body.

    Additionally, you should be discussing some type of chemo (often cisplatin) or a targeted biologic such as cetuximab. if the lump in the neck is also a SCC, this suggests a more systemic treatment is needed; i.e., chemo.

    Another thing to check when they do the biopsy is to understand if the HPV virus is present. This is becoming a more common cause of all head and neck SCCs, and your partner is at a prime age for seeing it. I would encourage you to read up on head and neck cancers, specifically caused by squamous-cell carcinoma.

    The good news is that HPV is a good indicator of a better outcome. This is very treatable, but your patient must take control of the situation and get a little more demanding in terms of treatment from his doctors. There's no apparent reason why this couldn't be treated as a cure. I wish you both well. Feel free to ask more questions here in this forum.
    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

  3. #3
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    The lump on the neck is metastatic SCC and there are a number of lumps, some he can feel,and when they did the FNA I thought I could see that the CT scan and thought I could see several.

    The doctors we saw at the MDM said there is one in his chest as well, but I don't know how they know it is the same as I know they only biopsied one.

    We are in the public health system. I'm not sure of our ability to demand things.

    I'm also not sure what scans can be done here. He has had several CT scans. The lumps in his neck were not found when he had a scan late last year. There was one done when he had chest pain a few months ago. I don't know what area it covered and they didn't mention any lumps at that time.

  4. #4
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    PS as someone who has had many partners in his past I guess HPV is a strong possibility.

  5. #5
    Moderator Senior User IndyLou's Avatar
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    Quote Originally Posted by olwen View Post

    We are in the public health system. I'm not sure of our ability to demand things...

    I'm also not sure what scans can be done here. He has had several CT scans.
    I'm sorry to hear that your only option is the public health system, but there ARE treatment options available to your partner. I think time is of the essence here, so I would encourage you both to get an appointment with the doctor and discuss what options you do have.

    A CT-scan can show various tumors, but a PET scan "lights up" where there is metabolic activity occurring. Tumors have a high uptake of glucose, as they grow faster than their surrounding organs. Such a scan could help diagnose where in the body the cancer has metastasized.

    Again, SCC with underlying HPV component is a positive indicator of a better outcome, but only if treated sooner, rather than later.
    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

  6. #6
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    Quote Originally Posted by IndyLou View Post
    I'm sorry to hear that your only option is the public health system, but there ARE treatment options available to your partner. I think time is of the essence here, so I would encourage you both to get an appointment with the doctor and discuss what options you do have.
    He is due for a 3 monthly appointment anyway. We'll make that for next week to allow them to have got any letters. It sounds as if an appointment with the oncology department is a high priority. They may be able to arrange a PET scan. I've discovered that there seem to be 3 in the country, all in private facilities which are contracted to District Health Boards. The public health system in NZ is where major issues are normally handled. In general it works okay. but it does leave less alternatives available.
    The GP may have the HPV status to hand.

  7. #7
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    I was googling Cetuximab and discovered this. I wonder if he could get on the trial. https://www.auckland.ac.nz/en/about/...cer-drugs.html

  8. #8
    Moderator Senior User IndyLou's Avatar
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    I absolutely agree that your partner should be meeting with the oncology department--he needs oncology specialists right now, given his cancer stage. If he is in otherwise good health (COPD shouldn't prevent him from being treated), he should most definitely need treatments soon. I'm still shaking my head at the advice that was given for palliative care only. No insult to you, but if this is what we can expect from government-run healthcare, I want no part of it. They seem to have acknowledged that there is little else they can do for your friend and don't want to expend any resources to deal with him.
    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

  9. #9
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    I had a phone call from the cancer co-ordinator at Christchurch Hospital yesterday (Friday afternoon). She started by asking how we were. Bad mistake. I told her exactly how I felt.

    We had had to drive to Christchurch. It's a little over 300km on a very scenic road (quite narrow, winding in places etc) If you did it in 4 hours it would be a fast trip, it took me closer to 5 with short breaks. Fred does not drive, he lost his license for drink driving a few years ago, and would have to sit a test. The procedure to get it back was too much for us. So I did all the driving, and I don't especially enjoy it. We drove down on Tuesday and stayed at my sister's place overnight. The appointment for the meeting was 10 am. We has a short examination from a doctor (a registrar?) and met the co-ordinator who showed us the meeting room and told us there would be 20 or so professionals there. Then we sat in a corridor and waited. Lots of hospital people went into the meeting, and cakes for morning tea went in. Then they started taking the people around us in. Then they would come out and their treatment further discussed in the corridor.

    Finally some time after 1pm the professionals started to leave and we were taken into an office by 2 doctors (neither the one we saw earlier). Virtually the first words were "palliative care only". We spent a little over 5 minutes with them. We already knew there were several lumps in his neck. They are tiny and recent. They said there was also one in his chest. Chemo was mentioned but rather downplayed as offering little advantage. After that I drove home. Close to 2pm before I left Chistchurch and after 7pm when we got home. It was instant noodles for tea because we were both shattered.

    Anyway I found out from the co-ordinator we would be referred back to the local ENT specialist, and to oncology nurses at the local department. Our DHB covers an area with 2 main towns about 100km apart. We are near Blenheim, the smaller one. Nelson has a larger hospital and many specialists are based there and visit Blenheim. Chemo can probably be done at Blenheim, but for an urgent appointment with ENT or other doctors we might have to visit Nelson.

    I think there is definitely an element of not spending money on Fred's treatment. There has been an ongoing fight to have Keytruda funded for melanoma treatment. Then Optiva was funded earlier this year, and Keytruda from the start of August. When I was looking at the information it seems that they are funded for melanoma only so we may not automatically have access to a full range of treatment.

    The suddenness of this has shaken me. Our ENT specialist didn't spot the lump?? in Fred's chest. He also had a chest scan a few months ago when he had a bad turn, and spent the day in the ED. They spotted nothing and he left with antibiotics.

  10. #10
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    Should also say I asked the cancer co-ordinator about HPV. She says it wasn't tested.

 

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