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Newly diagnosed metatistic SCC unknow origin

samtheman
Posts: 5
Joined: Mar 2010

Looking for others with insight into treatment and diagnosis. Newly diagnosed with stage IV (a) we think, meet with docs Tuesday. Surgery last Friday removed tonsil and 1cm tumor did multiple tissue biopsy's tonsil and all biopsy's negative. So essentially we have a PET scan with two neck masses and needle biopsy's of the neck masses / lymph nodes came back Squamous Cell Carcinoma. Currently at UCLA should we get a second opinion since they cannot find source? should we get on a plane to MD Anderson any advice or similar personal experience would be helpful.

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Sam. Other than removing the tonsil and the 1cm tumor (where did they find that and did they say it was negative?), you and I have exactly the same Dx. Are the nodes on the right side?

For my story go to my website www.justwrite.us for the whole story. Start at the bottom of this page - http://www.justwrite.us/cgi-bin/archives/2010/02/ - and go up from there. Really the first post is all you need for now to know what happened to me.

You are in very good hands here with a lot of people having gone through, are going through what you will most likely face. Ask a lot of questions and search the posts for subjects.

Welcome to the boat Sam and it does not make me feel good to say that.

Best,

Mick

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Sam,

I was diagnosed with SCC primary Right tonsil on Jan. 18th. Had a right neck dissection, where nodes were removed and also my tonsils. The mass on the right side of my neck was 7.4cm. I had no symptoms other than the mass. It did not bother me in any way. It was 1/10 that size when I noticed it. Had a needle biopsy done before surgery, but did not know the primary until after the surgery.

Like Mick there are times when they don't find the primary. If you feel you need a second opinion after your meeting on Tuesday then go for it. I would give the meeting a chance 1st though. My medical team really moved very quickly with me, and I never felt the need for another opinion.

I was also said to be stage 4, but my ENT said he really was able to clean me up very well.
Unfortunately, not well enough to avoid chemo and radiation. Tomorrow will be day 11 of my treatment
and I am doing pretty good so far.

Sam , this is a very good place for information. There are people like you and I, and also many people in various stages of recovery. Some days out and some years out. SURVIVORS. That is what this place is all about. So ask away, whatever your question, and the kind folks here will help you.

Hoping the best for you,
Steve

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

First welcome to the forumn. Almost everyone here has stage 4 and metastic disease. Just the nature of this beast. Lets start at the beginning. what does the PET scan say. dis you ask for a copy and the film? Start that practice now, kind of pick things up as you go. many times first films are no charge. The PEt has to say something? It either had FDG uptake or not. Does it venture a guess at the primary. Two lymph nodes, are they right or left nodes. which tonsil was removed right or left? 70% of unknown primaries are eventually found on the right tonsil if the lymph was on the right side. A biopsy of a tonsil and a 1 inch tumor returned negative???? Sounds very strange. needle aspirations in my opinion are a waste of time. They just don't get enough tissue for a definitive diagnosis. I assume your next step will be an operation to remove at least one lymph node and biopsy. You currently don't have enough information for a cancer diagnosis. Something is missing if someone has told you you have stage four squamous cell carcinoma. The next question is "Doctor are you telling me I have cancer" because one of them is holding back. Keep us informed and we can help you along. All the best and start asking lots of questions.

fbcuthguy
Posts: 15
Joined: Feb 2010

I was diagnosed with the same thing in September 09. I ended up at Vanderbilt working with a group of Head & Neck Specialists. I had 2 triple endoscopies doing "blind" biopsies in likely sites & also had a tonsillectomy so they could do a thorough dissection. After all that, still no primary. My team chose not to do a neck dissection because of the location of the lymph nodes involved. They felt that major nerve damage was a certainty.

I had 9 weeks of induction chemo with Taxol & carboplatin. I ended up having a bad reaction to carboplatin on the last treatment so when I started radiation, they switched to a cisplatin. Another nasty reaction, so I'm just doing taxol concurrently. I've had 16 radiation treatments & there is no evidence of the 3cm lymph node when they do manual exams. I'm hoping that we will avoid surgery altogether!

My advice is to find a comprehensive team that specializes in Head & Neck and regularly communicates. My first Dr. was very nice, but everything was farmed out & it seemed we were always out of the loop. At a good cancer center, the Docs sit down & make all decisions as a team.

I remember how I felt given the first diagnosis. It is a very difficult thing to wrap your head around! Cancer is full of unknowns, & having an unknown primary just adds to that stress. Stay informed. Get copies of everything. Gather your support system & do everything in your power to beat this thing down!

You are in our prayers!

Rob

Tanager75
Posts: 86
Joined: Aug 2009

Left tonsil, 2 lymph nodes, SCC undifferentiated. The head of my cancer team is the chief surgeon for head and neck cancer at Virginia Mason. I trusted them from the start, them being a team of doctors who look at each cancer patient's scans/dx and come up with a recommended plan. My doctor told me they would rather do radiation and chemo and not do surgery unless the former two did not work. Just got done with 9 months post treatment check up and everything looks great. I guess my point is I found a team I trusted and decided not to second-guess them after deciding not to get a second opinion. I wish you the best on your journey and recommend this site to keep on top of the questions you need to be asking your doc's.

Peace,

mark

Fire34
Posts: 350
Joined: Feb 2010

Sam
I had a similar dx here. mine was lso stage IV SCC with unknown primary. I had my tonsils removed at a young age but the endoscopy revealed that they were not completely removed, but what was left was negative.
Prior to treatments I had enough blood tests to choke a horse and am thinking that is how they decided stage IV. As mentioned above at University of Chicago the oncologists did work as a team and made decisions about my care that way, which I thought was pretty great.

Steve
What kind of chemo are you on? Wish I was able to work during mine.
Take care and be strong
Dave

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

Hey Fire 34 I'm currently still being treated there just wondering if you have ever been to the Tuesday head and Neck cancer group, I have not and was looking for input?

Fire34
Posts: 350
Joined: Feb 2010

Rat
No I have not I was just wondering when they are again. During treatment I felt Like garbage. Are you doing the clinical study? If so which arm. Luckily I had the inpatient arm as we live 60 miles south on 55. I wish I would hae went to a couple but my suppor,was the greatest my wife. Let me know what arm your in I have a follow up on the 16th and maybe I can look you up.

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

Don't know a thing about the clinical study. I was a transfer patient. Is it through the ENT or oncologist and is it something you can tell me more about. I'm guessing it has nothing to do with your physical arms. Are you refering to branches of study. I did sign something that they can use tissue from biopsies to run other tests and experiments and I'm more than happy to benefit someone down the road. I'm 9 months post treatment now so it may not even apply. Anyway we are not to far away from one another and I'm always looking for fellow survivors. I have not attended their group as it is on the fourth tuesday of the month during the day. 1:00 pm I think. I do attend a six pm group at the cardinal Bernadine center at Loyola which I will go back for a second time this month, they are having a radiologist as a guest speaker. I share a wonderful wife also but find that some aspects are only understood by fellow fighters as terrific as she is. All my best to you.

Fire34
Posts: 350
Joined: Feb 2010

Rat
I dont kow what the criteria was exactly, maybe a transfer patient you might not have been eligible. I started consults back in Jul of 09 and after I was diagnosed with Stage IV unkown(I had 4 tumors lower right side of neck) I was offered to take part in a clinical trial. They are still online to look at. The two arms were A & B. Arm A was on an outpatient basis and Arm B was inpatient. I was Arm B which consisted of 8 weeks induction chemo with Erbitux, Taxol, & Carboplatin. Then 5 alternating weeks of twice daily radiation(IMRT) again with Erbitux(weekly), Hydroxyurea(twice daily pill form), And 5FU for 24 hrs. a day for the 5 days inpatient. The bad part is you dont get to know the results of the trial, but who cares. My first PET was negative and I didnt need a disection .
Are you now a quarterly follow up? I dont start my quarterly until May. Take care
Dave

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

I assumed thats what you were talking about. I live right off of I-55 at the edge of the City. I followup with an ENT and ONCOman there. I also started treatment in July. Thats a good regime from what I've read. Wish i had started there. I had the old fashioned straight 3 21 day cycles of cisplatin and 39 once daily radiation treatments. My name is Rick. You must be around Dekalb which I pass through frequently?

Janisk
Posts: 1
Joined: Mar 2010

My husband was diagnosed with scc rt neck node with unknown primary initially. He had a PET scan which showed a "light area" at base of left tongue. THis had been biopsied (under local only) and was negative. He went for a second biopsy under ansethetic which confirmed the primary at base of tongue. He has justfinished 35 radiation treatments with chemotherapy ( 2 doses of Cisplatin) He kept a blog of his journey which may help some of you in your journey

www.janodavo.com
We have been home for 2 weeks now and I wxpected him to be drinking more. He is only able to sip ensure which I find disapointing. Is athis normal?
Janis

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

at the very least send out some slides of the pathology to another LAB. This is common and routinely done. Johns Hopkins even has a service for it as probably mayo and other big names. send to MD ANderson!

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