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Unknown primary to head and neck

Roar's picture
Roar
Posts: 247
Joined: Mar 2013

Anyone out there with unknown primary? Just completed 40 radiation treatments with 3 chemo (cisplatin) treatments. Just had my first clean pet scan. Everything was going great. Out of the blue I get an ear infection and my ENT says we need to watch/look for a tumer. I think being that the pet scan was clean, maybe all the mucous in my throat is clogging the tubes that drain the ear and causing the infection. I had one lymph node removed under my left jaw bone and my entire head and neck were radiated. Well almost my entire head- anywhere that the tumer could have been hiding, even though all biopsy's were negative. Anyone have any thoughts?

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Roar,

I posted on your other thread. I too have an unknown primary. The team's best guess is that my body eradicated it but not before it spread it's joy to my lymph nodes. Dx'd: Tx N2b Mo Stage IV. 

Selective neck dissection, two tonsillectomies (palatine and lingual), two sets of biopsies and two laryngoscopies didn't reveal the primaty site but HPV was discovered after the 2nd surgery. I'm 7 rads and 1 chemo into treatment. Week two starts tomorrow. I don't have post treatment experience to fully comment on your situation but it's a good thing your doctors are being pro-active. 

Positive thoughts and prayers.

"T"

Roar's picture
Roar
Posts: 247
Joined: Mar 2013

Good luck on the adventure! Eat all the food you can hold because you will need the calories as the weeks go by. Fr me hard boiled eggs got me through it in the beginning and towards the end of treatment pastina and college in chicken broth. Naturally an ample supply of a good food supplement will be needed such as glucerna or other protein drinks. Eggs are a good source of protein, so try dropping an egg in the chicken broth. Just remember you have to get around 1500 calories a day into your system- check with your nutritionist. French toast really wet was a good breakfast that went down easy enough and quacker instant oat meal maple and honey went down easy

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

I'm with you on the eating! I'm set with protein shake ingredients as well as eggs, pasta, chicken broth, cream of wheat etc. My partner/caregiver is an excellent cook and she's always after me to eat so I'll be doing the best I can. I'm still having swallowing issues since my surgery and while I'm doing swallowing exercises, it's slow progress. I imagine it'll become more challenging as the rads accumulate. I didn't think about french toast...pancakes too! Lot's of syrup for sure. Hmmmm... I think that's going on the food bucket list for tomorrow while I still have my taste buddies!

"T"

boardwalkgirl
Posts: 263
Joined: Jun 2012

I was diagnosed in April 2012 with squamous cell carcinoma that they found in what they thought was a branchial cleft cyst that ended up being a lymph node that had gone cystic. I had MRI of head and neck and a pet scan from the knees up and they could not find anything. Took 35 rounds of radiation and 3 cycles of Cisplatin. Clear Pet scan in October 2012. Just had visit with ENT and he scoped nose and throat, said everything looked good. Will have cat scan in June. I guess it is good for him to stay on top of things but just remember it isn't cancer until they say it is. Mine was HPV + and my doctors tell me the success rate is better with HPV+ and with people that they never find the primary on.

AJW1966
Posts: 69
Joined: Nov 2012

Docs concluded that mine came from BOT (base of tongue) because of the proximity/size of the tumor, HPV+ , the stage plus whatever other medical calculations they use. One lymph node the size of tennis ball under left jaw. Had 30 rads with no chemo. I'm 4 months out of treatment.

Lots have said that rads is the "gift that keeps on giving". I contribute a lot of my pains(ear/neck) and discomforts(neck, mucous and so forth) to rad aftermath.

Prayers to you,

 

Alan

 

rbloki
Posts: 4
Joined: Apr 2013

Good to see stories of people surviving cancer with unkown primary. I woke up one day with what proved to be a malignant tumor in my left supraclavicular lymph node.

After excising the tumor, four blood tests, a full body cat scan, ENT exam, endoscopy, colonscopy, MRI and ultrasound of kidneys, and a PET scan no primary detected. Only a small (lowest level of stage one) mass on one kidney.

This week I am going to Sloan Kettering in NYC to discuss a treatment plan. Haven't slept well since this all started. And I must admit - I'm scared.

I'm curious about those who noted HPV as root casue being discovered after treatment started - how did they determine that as cause?

rbloki
Posts: 4
Joined: Apr 2013

Good to see stories of people surviving cancer with unkown primary. I woke up one day with what proved to be a malignant tumor in my left supraclavicular lymph node.

After excising the tumor, four blood tests, a full body cat scan, ENT exam, endoscopy, colonscopy, MRI and ultrasound of kidneys, and a PET scan no primary detected. Only a small (lowest level of stage one) mass on one kidney.

This week I am going to Sloan Kettering in NYC to discuss a treatment plan. Haven't slept well since this all started. And I must admit - I'm scared.

I'm curious about those who noted HPV as root casue being discovered after treatment started - how did they determine that as cause?

Roar's picture
Roar
Posts: 247
Joined: Mar 2013

Let us know how it goes

Roar's picture
Roar
Posts: 247
Joined: Mar 2013

If you weren't scared you would be crazy - have faith in your higher power and your team of doctors- everything will work out- keep us posted

donfoo's picture
donfoo
Posts: 1274
Joined: Dec 2012

>> I'm curious about those who noted HPV as root casue being discovered after treatment started - how did they determine that as cause? <<

There is a test they run using tumor tissue called HPV p16 staining. They apply some sort of dye to a thin slice of the tumor and I guess if it positive for the p16 strain of the HPV virus it presents some visual indication.

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

I presume testing the same tissue that has been concluded as SCC (in my case), and that same tissue tested and determined to be HPV infected. Those two conclusions gives them the information I presume, to determine the cancer was HPV derived...

HPV16 is the most common H&N cancer dervived from HPV (from my understanding), but you can also have HPV18 I believe, and maybe more types of HPV... I have only read of (that I can remember), HPV16 & 18 associated with H&N.

JG

 

rbloki
Posts: 4
Joined: Apr 2013

A second question I would have for people who have had this diagnosis - how was your health prior to diagnosis? Did you have any symptoms?

I basically discovered a hard lump (which turned out to be a malignant tumor) on my left supraclavicular lymph node. It was excised and as all would gues, was "poorly differentiated squamous cell carcinoma" that didn't lead to a specific body area. I had no symptoms associated with any GI tract cancers (fevers, weight loss, blood in urine, throat issues, gasrto issues) - in fact about the opposite - other than a sinus infection I had no health issues at all. In addition my excercising (lifting, running) was as good as it had been in 10 years.

I had CAT scan of upper body, PET scan, endoscopy, colonoscopy and ENT exam and all came up clean. They found a small mass on one kidney (lower end of Stage 1 which they ruled out as primary. Based on biopsy they are theorizing head/neck cancer.

After the lymph tumor surgey (and I also had hernia surgery) and all the tests I lost about 10lbs and was out of gym for 2 weeks - but I've gained weight back and almost all the way back in terms of strength and cardio endurance.

Also with an unknown primary - what do they check to determine if the treatment has been effective?

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Wow,

That sounds nearly identical to me with just a couple of exceptions.

Mine started with a sinus infection last August. My left lymph node was swollen. Really I went through the same scenario....a couple of surgeries etc. No symptoms until November. By the time it was Dx'd as SCC, it had firmly taken hold. 

CAT and PET scans showed the lymph nodes but nothing else. I had two tonsillectomies, biopsies and laryngoscopies and they couldn't find the primary. My team believes my body eradicated the original tumor ut not before it spread it's joy around.

I lost about 30lbs from the first surgery until I started treatment and another 10 since then. Treatment is brutal but you'll survive.

Unfortunately, the "Unknowns" get the full gamut of rads They have to hit a lot of area to insure they get the areas that may have held the original tumor. I know my plan is to work to insure I can sing. They are trying to minimize side effects in certain areas that really don't need the rads anyway.

The question "how do they check?" is a good one and one I will pose to my RO and let you know what he says. I see him tomorrow. 

The Countdown Begins! 

"T" minus 9

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Roar,

I posed the question to my RO team. You nailed it with your guess. Since there is no point of reference other than the initial scans, that's what they use. PET and CAT scans, Essentially from the knees to the top of you head looking for anything that lights up or is drastically different from the initial scans. 

They typically will do this at 3 month intervals. Inititially there's too much "junk" in the way to get an accurate reading without the chance of false positives if the scans are done too soon. Everything has to settle down inside.

"T"

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

Location, location, location....

From what I gather and talking, communicating with others... Unless they just happen to hit the tissues infected with HPV during biopsy, it's not going to show up....

JG

Viilik70's picture
Viilik70
Posts: 59
Joined: May 2012

I've had squamous cell twice the first time with unknown primary. Went 15 years and got it again but the primary was in my nasopharynx. I had radiation the first time and proton radiation the second time and still alive and kicking 4 years out so beating this is cake, so chin up and trust God because He's always taken care of me and my family and will take care of you!

rbloki
Posts: 4
Joined: Apr 2013

Had visit at Sloan in NYC. They want to do several more tests. Had an ultrasound which came up normal so likely don't have testicualr cancer. They also want to scope/biopsy my tonsil area and check an area of my shoulder where I had a previous basal cell skin cancer (about 2" from where lymph cancer was found).

If these come up negative they want to just monitor me closely until primary makes itself known. Given I have no symptoms and no clear primary from all the tests they do not feel they can plan an effective treatment, and if they pick wrong treatment, it could cause harm which could prevent proper treatment should primary later emerge.

So more tests for now.

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

sorry to hear they can't find the primary but at least they aren't giving up.  i'll keep u in my prayers.

God bless,

debbiejeanne

Roar's picture
Roar
Posts: 247
Joined: Mar 2013

I initially wanted to go to Sloan however being that my wife is a nurse at another big local hospital I chose her hospital - I went for other opinions and basically my treatment options were all the same no matter where I went. After they removed one lymph node from my neck on the left side right under my jaw and it came back SSC I went through another round of biopsies which came back negative. They told me it was possible that my immune system may have taken care of tuner primary site tumer. Tat being said after the neck dissection the doctor told me the node was well encapsulated and didn't look like it spread anywhere and i was spared a full neck dissection with all lymph nodes removed. All doctors including Sloan recommended 30 rads and 3 chemo treatments for me. Given the size of the lymph node they staged my cancer at 4. I asked the question what if I don't go for the rads and chemo and they told me it would kill me, so they treated me aggressively - is I am wondering how your doctors are telling you to wait and see. My treatment basically covered my whole neck and head- I can't remember what they called it " something like we idlers ring " or something close to it and it included tonsil area nasal passages tongue and throat while sparing sliver glands and nerves in the neck. Your doctors know best so you have to trust them and have faith in your higher power. It just seems strange to me that you had lymph nodes removed and confirmed SSC and a spot on your lung and they want to wait. 

donfoo's picture
donfoo
Posts: 1274
Joined: Dec 2012

All doctors including Sloan recommended 30 rads and 3 chemo treatments for me. Given the size of the lymph node they staged my cancer at 4. I asked the question what if I don't go for the rads and chemo and they told me it would kill me, so they treated me aggressively -

FYI - My surgeon trained at MSKCC and was awarded a fellowship there, quite an honor I believe. His advise to me clearly is to treat aggressively and at all decision points to choose the more aggressive option if it had improved odds for cure. HIs belief, and maybe that of MSKCC, is to treat hard upon first occurence as treating recurrence is compromised in many ways, so your best shot is the first shot to kill it off for good. Of course, this still needs to be placed into context to the patient's overall health, age, QOL, etc. but young and fit are likely to take aggressive routes.

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