SCC Unknown Primary

Joel4
Joel4 Member Posts: 263 Member
edited March 2014 in Head and Neck Cancer #1
Hello everyone my name is Joel and I live in Rochester NY. I am 39 years old and married to a wonderful angel of a wife and we have two young children.
One month ago I was diagnosed with SCC unknown primary after a biopsy was performed on a swollen lymph node I noticed on my left neck.
A PET scan showed activity in my right and left tonsil and other lymph nodes in the left neck.
I had a tonsillectomy and left neck dissection two weeks ago. My Doctor at the Wilmot Cancer Center expected the primary to be found in the tonsil.
Pathology revealed that the only cancer found was in the original node, Doc said I'm N1 with no extracapsular spread.
The tricky part was the primary was not found. The tumor board met this week and reached a consensus that I should not have follow up radiation which was what they were planning on doing prior to the pathology report.
They are suggesting that I should just have follow up exams and if a primary is found they will take action. They think there is a good chance that the primary is gone.
I want to accept this as good news and an answer to prayer but this is all so unexpected I don't know what to think.
Has anyone here heard of anything like this?
Also I'd like to take a second to thank of all of you who have shared their stories and experiences in hopes of helping others. You are all very kind and brave.

Comments

  • Scambuster
    Scambuster Member Posts: 973
    #2
    Good news - now stay healthy
    Hi Joel,

    You sound you have been given very good news. While studies vary, the speed any remaining cancer would grow and show itself would be quite slow. Also it can be hard to get a strong reading if only a few tiny remnant remain with the scan. I had 2.5 x 1.5cm SCC removed from my left tonsil and ENT doc reckons it took 9+months to get that far with no spread.

    Your priority now is to remain cancer free. I harp on here about diet etc but the more I read and study, the more convinced I am, this is the way out. You can PM me anytime and I am happy to share what I have found. If not, I recommend you read or watch the DVD called 'Healing Cancer from the inside' and definitely read 'The China Study'. Both can be downloaded.

    Regds
    Scambuster
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
    No Primary
    Hey Joel. There are quite a few of us on here that have had an unknown primary. I had a PET and 2 CT Scans, and the only thing that lit up was the tumor on my neck. I had metastatic SCC HNC Stage 4. The day before my modified radical neck dissection they did a bunch of exploratories and biopsies. No primary. My tumor was on my left side. They took my salivary gland and 23 lymphnodes, 3 cancerous. I then had 30 radiation treatments. My PEG is still in lo these almost 15 months later. So.....

    No radiation sounds great to me! As Scam says eat right, and do your follow ups and stay healthy. Best of luck to you.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    double post
    yada yada yada
  • uvm1978
    uvm1978 Member Posts: 33
    #5
    sweetblood22 said:

    No Primary
    Hey Joel. There are quite a few of us on here that have had an unknown primary. I had a PET and 2 CT Scans, and the only thing that lit up was the tumor on my neck. I had metastatic SCC HNC Stage 4. The day before my modified radical neck dissection they did a bunch of exploratories and biopsies. No primary. My tumor was on my left side. They took my salivary gland and 23 lymphnodes, 3 cancerous. I then had 30 radiation treatments. My PEG is still in lo these almost 15 months later. So.....

    No radiation sounds great to me! As Scam says eat right, and do your follow ups and stay healthy. Best of luck to you.

    Modified radical neck dissection
    Hi. I just had a modified radical neck dissection last week and am awaiting the pathology reports. I had one node (level 2a) in the right neck that was biopsied and determined to be SCC. They think it originated from a surface level SCC removed from my forehead. They are indicating radiation for the parotid and neck. Just wondering what the radiation was like and how you are doing? Deb
  • Scambuster
    Scambuster Member Posts: 973
    #6
    uvm1978 said:

    Modified radical neck dissection
    Hi. I just had a modified radical neck dissection last week and am awaiting the pathology reports. I had one node (level 2a) in the right neck that was biopsied and determined to be SCC. They think it originated from a surface level SCC removed from my forehead. They are indicating radiation for the parotid and neck. Just wondering what the radiation was like and how you are doing? Deb

    New Post
    Hi Deb,

    Welocme to a great site with loads of support and useful information. You may wish to repost this as new thread to get better feedback.

    As for the Rads, I had IMRT (Intensity modulated Readio -therapy)which is said to be better than the older type as it's more specific and causes less collateral damage. I had Erbitux Chemo at the same time so the reaction does vary when you add Chemo.

    I did get quite sick and weak during my treatment. I needed a PEG by week 3 as was losing too much weight. You will find it affects your mouth and throat pretty harshly and eating can be hard so discuss the PEG with your Doctor. Some opt to get one before they start, others midway and some not at all.

    The after effects are generally dry mouth which is a nuisance so also check w/ your doctors about Amifostine, which can shield you salivary glands during rads.

    You can get through this. post here for any questions Deb. Many will follow with some more info but as I suggested you might want to repost as a new thread.
    Regds
    Scam
  • micktissue
    micktissue Member Posts: 430
    #7
    Joel
    Hey Joel. Welcome to the forum.

    My Dx is the same as yours only mine was on the right. I had surgery in January (they took 30+ nodes and 7 had disease, minor extracapsular extension, stage 4 by definition). Chemo (cisplatin x3) and radiation (33 sessions over 7 weeks) followed in February.

    I blogged about the experience at www.justwrite.us. The thing about unknown primary or occult tumors is that the target area is also unknown. The result is that, in my case, they radiated my entire mucosa. When the primary is known the target is much smaller and therefore the damage to surrounding tissue is less. What that meant for me was a fairly brutal time of it. I lost 50 pounds (199 to 149, now maintaining around 151) because I could not eat enough. I got a feeding tube (PEG) at the end of treatment when I was losing a couple of pounds a day. I am now 5 months post-treatment and I still have the PEG because my esophagus is closed due to radiation scarring (it's called a stricture). Bear in mind that a stricture like mine is uncommon (less than 5%) so it's not likely in your case.

    The good news I take away from what you wrote is no extracapsular spread. With no adhesions the survival rate goes up. Are you a smoker? Drinker? Those take away from survival rates. Did they check for HPV in your nodes and biopsies? Finding HPV adds to survival rates (less chance of recurrence).

    You are in for a bit of a rough time, but you're young and look strong and that is in your favor. Your angel of a wife will be tested and let her know that she is welcome here for support and help and ideas and tips. There are a few caregivers in the forum who have experience and wisdom from their journey with cancer. Your kids will be tested too when they see papa struggling to get out of bed when the chemo hits (maybe not, but be prepared) so you might want to get a kid's book on cancer and let them know what's coming. If you to go my blog you will read the 3-Rocks story about what my 6-year-old did in response to my struggle, it was pretty amazing.

    All the best Joel. Keep us posted and know that we are here for you and your caregivers. There is a lot of experience and help here, Please do not hesitate to visit even if it's to say you feel like crap or that you feel great.

    Best,

    Mick
  • KristynRuth86
    KristynRuth86 Member Posts: 140
    #8
    micktissue said:

    Joel
    Hey Joel. Welcome to the forum.

    My Dx is the same as yours only mine was on the right. I had surgery in January (they took 30+ nodes and 7 had disease, minor extracapsular extension, stage 4 by definition). Chemo (cisplatin x3) and radiation (33 sessions over 7 weeks) followed in February.

    I blogged about the experience at www.justwrite.us. The thing about unknown primary or occult tumors is that the target area is also unknown. The result is that, in my case, they radiated my entire mucosa. When the primary is known the target is much smaller and therefore the damage to surrounding tissue is less. What that meant for me was a fairly brutal time of it. I lost 50 pounds (199 to 149, now maintaining around 151) because I could not eat enough. I got a feeding tube (PEG) at the end of treatment when I was losing a couple of pounds a day. I am now 5 months post-treatment and I still have the PEG because my esophagus is closed due to radiation scarring (it's called a stricture). Bear in mind that a stricture like mine is uncommon (less than 5%) so it's not likely in your case.

    The good news I take away from what you wrote is no extracapsular spread. With no adhesions the survival rate goes up. Are you a smoker? Drinker? Those take away from survival rates. Did they check for HPV in your nodes and biopsies? Finding HPV adds to survival rates (less chance of recurrence).

    You are in for a bit of a rough time, but you're young and look strong and that is in your favor. Your angel of a wife will be tested and let her know that she is welcome here for support and help and ideas and tips. There are a few caregivers in the forum who have experience and wisdom from their journey with cancer. Your kids will be tested too when they see papa struggling to get out of bed when the chemo hits (maybe not, but be prepared) so you might want to get a kid's book on cancer and let them know what's coming. If you to go my blog you will read the 3-Rocks story about what my 6-year-old did in response to my struggle, it was pretty amazing.

    All the best Joel. Keep us posted and know that we are here for you and your caregivers. There is a lot of experience and help here, Please do not hesitate to visit even if it's to say you feel like crap or that you feel great.

    Best,

    Mick

    Same here
    My dx is the exact same as yours. They did a left neck dissection, removed my tonsils and 20 lymphnodes which all came back negative for any kind of malignancy. My tumor had slowly been growing for 3 years and was about the size of a mandarin orange before I got my biopsy which is why perhaps they are taking different action. At first they just wanted to do radiation for 7 weeks which I had come to accept, yesterday they told me the drs decided I would need Chemo to go along with the radiation. It puzzles me why me and you have the same dx but such differnt treatment methods. I guess in the end it's the drs who decide. I know your recovery from the surgery was no picnic, but it's wonderful that they don't feel the need to make you go through any rough treatments. I pray everything will be smooth sailing for you from here on out!
  • Joel4
    Joel4 Member Posts: 263 Member
    #9
    KristynRuth86 said:

    Same here
    My dx is the exact same as yours. They did a left neck dissection, removed my tonsils and 20 lymphnodes which all came back negative for any kind of malignancy. My tumor had slowly been growing for 3 years and was about the size of a mandarin orange before I got my biopsy which is why perhaps they are taking different action. At first they just wanted to do radiation for 7 weeks which I had come to accept, yesterday they told me the drs decided I would need Chemo to go along with the radiation. It puzzles me why me and you have the same dx but such differnt treatment methods. I guess in the end it's the drs who decide. I know your recovery from the surgery was no picnic, but it's wonderful that they don't feel the need to make you go through any rough treatments. I pray everything will be smooth sailing for you from here on out!

    Crazy
    Yeah it is strange huh? I had one lymph node test positive out of the forty or so removed and it showed no extra-capsular spread.
    Prior to the pathology following surgery the plan was radiation and possibly chemo so when the Doctor suggested otherwise I was shocked. The tumor board met and reached a consensus and they suggested no further treatment at this time.
    My Doctor said listen, if your primary shows up in an exam we will do radiation and be able to target it better and your prognosis would not change. He also said that the primary may be gone. I accepted the boards recommendation and decided that the miracle that I had prayed and believed for had happened.
    A recent PET scan just showed activity at my base of tongue and my Doctor said that since they are taking such a conservative approach with me he wanted me in the OR for a biopsy.
    That biopsy just came back clean and I just keep rolling on.
    I wish you the best with your treatment and I just know that it will all work out for you.
  • Scambuster
    Scambuster Member Posts: 973
    #10
    Joel4 said:

    Crazy
    Yeah it is strange huh? I had one lymph node test positive out of the forty or so removed and it showed no extra-capsular spread.
    Prior to the pathology following surgery the plan was radiation and possibly chemo so when the Doctor suggested otherwise I was shocked. The tumor board met and reached a consensus and they suggested no further treatment at this time.
    My Doctor said listen, if your primary shows up in an exam we will do radiation and be able to target it better and your prognosis would not change. He also said that the primary may be gone. I accepted the boards recommendation and decided that the miracle that I had prayed and believed for had happened.
    A recent PET scan just showed activity at my base of tongue and my Doctor said that since they are taking such a conservative approach with me he wanted me in the OR for a biopsy.
    That biopsy just came back clean and I just keep rolling on.
    I wish you the best with your treatment and I just know that it will all work out for you.

    Excellent news Joel
    Whoa, that is weird and wonderful. The body is an amazing machine.

    I do think now is an important to figure out how you can improve your health through diet and exercise so as to reduce chances of recurrence. Building your immunity is oe of the key things to work on because it that's working well, it should head off the nasties.

    All the best to you Joel. Great news.

    Scam

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