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Newly diagnosed SCC in lymph nodes but primary source unknown- Should I get tonsillectomy biopsy?

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Hi, everyone.  I was just diagnosed with metastatic squamous cell carcinoma -- head and neck cancer. I am 59 yr old male in good health...not a smoker or heavy drinker.  My lymph nodes on both sides are affected, but they could not identify a primary cancer site through MRI, PET scan or ENT exam.  The ENT is recommending more biopsies under general anesthetic including a complete tonsillectomy to improve chances of finding the primary source, but he says there is still only a 20% chance they will find the primary source through this procedure.  He says the treatment will likely be chemo-radiation therapy without surgery regardless of what they find, However, he said if they find the primary site they can focus the radiation more directly on the site instead of radiating the entire head and neck.  From what I hear, a tonsillectomy is very painful and slow recovery...and it would only be done with a slim chance that it will help identify the primary site. They could still do biopsies of the oral and nasal cavities and the tissue of the tonsil without taking the tonsils out, but taking them increases the chance they will find cancer if it is in the tonsil.   Is the tonsillectomy worth it?  Does anyone have any experience or information on the pros and cons of the tonsillectomy in this situation?

Michael

 

phrannie51's picture
phrannie51
Posts: 3687
Joined: Mar 2012

nobody wants to belong to.  You have struck gold tho, by finding yourself in this forum asking questions....LOTS of knowledgable, kind, and supportive souls are here.  I don't know how many here were offered the choice of getting a tonsillectomy and then refused....but I do know a lot of folks here have had them....with unknown primaries and with known ones.  My cancer was inoperable, so I didn't have to go thru choosing anything.  One thing for sure...IF they do find the primary, getting rads in a lesser area is more than a nice benefit...around here they call radiation the gift that keeps on giving....so less area is way better.

You'll be hearing from some people here soon who were in the same spot you are in.

Skiffin16's picture
Skiffin16
Posts: 8072
Joined: Sep 2009

I was STG SCC Tonsils (left side) and a lymphnode, same side...HPV+. More than likely yours is HPV+ as you mentioned not being a smoker... Also, I would presume STGIV since on both sides, not 100% sure on that. But in reality treatment more than likely will be the same either way.

For me, tonsil was the primary, lymphnode the secondary.... Tonsils came out upfront, power port inserted, then nine weeks (three week cycles) of cisplatin, taxotere and 5FU. Then an additional seven weeks of concurrent weekly carboplatin and 35 daily rads.

Yes, the tonsils coming out can be pretty intense, not sever, but rough for 7-10 days...doable.

I would do what the ENT feels best, but that's because mine has been spot on with every aspect of my diagnosis and treatment since it all started January 2009.

Radiation has the longest long term effects, chemo was rough but doable as with rads...

But with the rads, your're gonna lose your taste and saliva more than likely for a few months pretty much.

As for radiating the whole head and neck area... I'm sure that wouldn't happen...at most they're going to radiate the area of the lymphnodes that were effected, and any known areas.

Welcome aboard....

John

CivilMatt's picture
CivilMatt
Posts: 2928
Joined: May 2012

Hi Michael,

 

Welcome to the H&N forum, it sounds (unfortunately) like you qualify to be a member, sorry for that.

 

When the lymph nodes light up it is generally traced back to a few common areas like the tonsils, base of tongue, etc.  Your ENT is more than likely looking where experience and the scans led him.

 

As Skiffin mentioned, treatment will likely be similar whether the primary is found or not.  I don’t know what they saw on the PET scan, but that will probably help focus their treatment areas.

 

It is no joy having surgery, but far less fun having cancer.  Your team is just formulating your plan when it is ready and activated you will do fine and have many years in front of you.

 

Best,

 

Matt

fisrpotpe's picture
fisrpotpe
Posts: 1334
Joined: Aug 2010

sorry i must say welcome to the club, wish you did not have to be here but more than happy you are as this is a good place for help. 

i had radiation and chemo 17 years ago, them they just could do a broad treatment over the whole nect. there were no options. do to that i have many long term side effects. 

if i had the same problem now vs back a lifetime ago, i would look long and far for the primary. if found the new radiation equipment helps pin point the treatment and reduces many of the long term side effects. i watch many in my local area first hand that had the same thing i did with the new equipment and it sure comes accross that the treatments are much more bearable and the side effects much easier to live with. 

for me this would be an easy choice! Keep Looking!

good luck

john 

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

Hi Michael,

As the others have said, "Welcome", but sorry it's under these circumstances. This is a great group of folks, supportive and informative. 

Your case sounds like mine with the exception I was a smoker. I was diagnosed with SCC Nov. 30th 2012. All scans showed the lymph nodes affected and I had a slight light up on my right tonsil in the PET scan. I had a tonsillectomy (palatine tonsils), biopsies of my tongue, nasopharynx and a laryngoscopy on Dec. 21st. Being that the tonsils and back of tongue are a major source of the primary site, it is necessary to remove and biopsy them. Also, being that they can be a source of future infection, it's best to remove them. You don't need them anyway.

After the surgery and biopsies, they didn't find the primary site. I was Dx'd  Tx, N2b MO Stage IV. I had metastasis to the lymph nodes on the left side of my neck and they were large and growing fast.  The initial plan of treatment (locally) was chemo/rads and no surgery. After seeking a 2nd opinion (and I HIGHLY suggest you seek one), I decided on treatment at Johns Hopkins in Baltimore as opposed to locally (best decision I ever made!). Their plan of action was to remove the tumors via surgery followed by rads and possible chemo. They felt they had a 50% chance of finding the primary. I had a selective neck dissection as well as further biopsies and another laryngoscopy on Feb 7th. They also took my lingual tonsils as they saw something suspicious there. Unfortunately, all pathology came back negative for the primary. A true unknown primary is rare (only 1-2% of all H&N cancers). The positive is that the tumors came back positive for HPV which bodes well for treatment. In my case, being that they removed the cancer via surgery, the treatment is more of a mop up operation. I'm getting 30 rad sessions and 6 weekly chemos (Cisplatin). The tumors were large and had broken out of their capsules so we have to do chemo to make sure we get any rouge cancer cells that might have escaped. They still have to irradiate a larger area but it's necessary to cover the bases.  

Ok... I'm not going to sugar coat this. Yes, a tonsillectomy is brutal at our age (I'm 54). Take into account that they will be taking chunks of your tongue out and that adds exponentially to the pain. The first day or so is not too bad but around 3-4 days out until about 2 weeks out you're going to feel like death warmed over. The pain is excruciating but is is managable with meds. Make sure you stay ahead of it even if you have to wake up to take your meds. I neglected to do so a few times and regretted it. Get used to a liquid and soft food diet. (Cream of Wheat and mashed potatos and eggs were a staple). I recommend you visit this site www.tonsillectomyrecovery.com. It's very helpful concerning what you'll be experiencing and quite graphic as well. 

Keep us informed of your progress! Positive thoughts and prayers coming your way. As all will say here. This is no picnic but it is doable. I'm just a few days into the treatment part of the journey but I've made it through thus far and my road up until now has been more than bumpy! 

"T"

PS... Initially, they didn't find the HPV. It was the 2nd opinion and subsequent surgery that discoverd it.

 

Hard12Find
Posts: 204
Joined: Sep 2012

Sorry you had to meet this wonderful group of people, truly the best friends I have never met. I know there are differing thoughts on this subject but my radiation oncologist took the stand, to reserve the surgery for after the radiation and chemo if there still was cancer to be found, however I did have a primary tumor located which makes sense. in the case of not knowing the primary, I am not sure how I would want to proceed. You have to decide if the odds of locating it are worth the extra intusions into your body, because even knowing you will still likely receive the same course of treatment, but yes maybe a little more localized or focused on the primary. with nodes on both sides of the neck affected you still will be receiving a large area of radiation treatment. I would rely on your Dr and ask how much difference it is likely to make even if they find the primary.....remember you will need a peg tube, and med port most likely installed surgically as well, so weigh your options carefully.  My best advice is to pack on as many pounds as you possibly can I have lost 85  lbs in the last 6 months, due to treatment and recovery complications. Best wishes on this road you are about to travel, it is tough, but if I can survive then anyone can....

Jim

Hard12Find
Posts: 204
Joined: Sep 2012

Sorry you had to meet this wonderful group of people, truly the best friends I have never met. I know there are differing thoughts on this subject but my radiation oncologist took the stand, to reserve the surgery for after the radiation and chemo if there still was cancer to be found, however I did have a primary tumor located which makes sense. in the case of not knowing the primary, I am not sure how I would want to proceed. You have to decide if the odds of locating it are worth the extra intusions into your body, because even knowing you will still likely receive the same course of treatment, but yes maybe a little more localized or focused on the primary. with nodes on both sides of the neck affected you still will be receiving a large area of radiation treatment. I would rely on your Dr and ask how much difference it is likely to make even if they find the primary.....remember you will need a peg tube, and med port most likely installed surgically as well, so weigh your options carefully.  My best advice is to pack on as many pounds as you possibly can I have lost 85  lbs in the last 6 months, due to treatment and recovery complications. Best wishes on this road you are about to travel, it is tough, but if I can survive then anyone can....

Jim

D Lewis's picture
D Lewis
Posts: 1530
Joined: Jan 2010

Hi Michael,

So sorry you needed to come here, but welcome, glad you came.  My response will be like many of these.  My SCC was identified first in lymph nodes - on both sides, and was followed up by a biopsy surgery to try to identify the primary.  In that surgery, the ENT removed and tested my tonsils and biopsied the base of my tongue.  My primary showed up as base of tongue.  Was removal of my tonsils unnecessary?  The recovery was long, painful and a pain in the ass.  I felt a whole lot better about having the tonsils out after I learned that this type of cancer is prone to recurrence, particularly in the tonsils, if you still have them.   That being said, 'base of tongue' cancer is considered to be a 'mid-line' cancer, moving into lymph nodes on both sides, a lot faster than would a cancer located in one or the other tonsil.  SCC in lymph nodes on both sides of your neck may be a very good clue that your primary cancer is (or was) base of tongue.  Personally, I don't regret removal of my tonsils. I feel safer.

Deb

jcortney's picture
jcortney
Posts: 411
Joined: Sep 2012

Michael,

I, like most of the others that have already given you great suggestions, have SCC with lymph nodes on both sides effected.  My primary was found to be base of tongue (bot). But it took my second opinion ENT to find it.  So, even if you were sure where your primary was, I would still encourage you to go to a certified cancer center and get a second opinion.  You are almost definitely going to have Chemo and the RADs, since you said that your lymph nodes are effcted bilaterally, will entail almost your whole neck being radiated (like mine).   So my point is while you will probably wind up having surgery, I might opt for biopsies by themselves first to see if I really needed it.  I mean if it turns out to be BOT or somewhere else, why have the surgery.  It might mean two times going under, but it might save you a bunch of pain.

Just my 2 cents worth.  Whatever you decide you'll find a plethora of information and support here.

 

Joe Cortney

Dallas, TX

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Thanks, everyone for your very helpful responses.  I never expected so many responses so quickly.  What a great help to me.  Thanks!

I live in Minnesota, so yesterday I arranged to go to the Mayo Clinic on Monday to get their opinion about the tonsillecctomy and about the treatment they will recommend.  Then, later next week, the cancer team that I started with in Minneapolis will give me their recommendations, too. 

I am fortunate, too, that the husband of one of my colleagues at work is an oncologist and is giving me some advice and information along the way. Once I decide the right course of treatment I may go to his clinic for the chemo/radiation treatments.  It is also close to my house, which will make the treatments more convenient.

Because several people have advised me to "bulk up" before I start treatment, I am going to indulge myself in eating for the next few weeks before treatment starts.  This morning I asked each of my friends to take me out to their favorite restaurant for dinner over the next few weeks.  I am looking forward to spending the time with each of them and will savor the food and not worry about gaining weight.  What a nice treat, although temporary. 

Thanks for your advice and support.  I will check in regularly and ask questions when I need to.  Hopefully I will be around a long time to return the favor to others and the newbies that join later.

Michael

 

 

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

Hi Michael,

Now you're talking! The Mayo clinic is one of the best CCC in the country (#4 I believe)!  They have some of the most advanced technologies available including the DaVinci Robot. If you decide to get the surgery, ask about it. It's less invasive and recovery times are improved because of it. My surgeon at Johns Hopkins used it to remove my lingual tonsils and do the biopsies. I posted a thread showing pics of it in action on me http://csn.cancer.org/node/255249 (don't look if you're squemish). 

"T"

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

I think the world of Mayo in Rochester. I was treated for my H&N cancer here in STL but traveled to Mayo several times with my brother for 2 primary cancers..we both remain with clean scans. It's a tough journey, don't lose sight of the goal for NED (no evidence of disease). God Bless!

Candi

D Lewis's picture
D Lewis
Posts: 1530
Joined: Jan 2010

A thing once seen cannot be unseen.  Eeeek.  I peeked at your pics, Fishmanpa, and had to look away.

Deb

jcortney's picture
jcortney
Posts: 411
Joined: Sep 2012

Did you see the ghost of cancer past?

J.

cureitall66's picture
cureitall66
Posts: 860
Joined: Aug 2012

First, Welcome! You are very fortunate to find this forum...there are WONDERFUL people here that will help you along the way. I've been on here since August when my loved one (male age 51) was dx with SCC, Base of Tongue, Stage IV, HPV16+, 2 lymphnodes involved on same side as BOT. It was noticed with the lymphnodes first with unknown primary. After a hunch, the ENT wanted to do biopsy of BOT, as his tonsils were out as a child. Sure enough, there it was at the BOT. They did not do surgery as the cancer was deep, even though it was the diameter/size of a dime. Had they decided on surgery, it would have been the Divinchi Robotic surgery. His tx consisted of 7 wks of concurrent Chemo (Carboplatin & Placlitaxel) and Radiation. No surgery to neck. The tx was fairly rough, but doable. We finished tx in December and are 3months out with a clean scan!! Technology today, compared to even 5 yrs ago has become more advanced with this kind of cancer. The radiation equipment is state of the art with it's ability to directly pinpoint compared to years ago.  Be sure to stay close to the forum here for some wonderful tips to get you through. Please ask questions as often as you like. There will always be someone that has experienced a similiar issue...you will get very helpful tips and advice here. There is always some positive energy on here.

~C 

Crazymom's picture
Crazymom
Posts: 295
Joined: Nov 2011

Hi  I had SCC with 2 lymph nodes and left tonsil.  they did no find the tonsil primary cancer until they did the tonsillectomy biopsy.  So...it was a good operation for me as it helps them plan the chemo and rads if they know where the primary is.  I would do it if I were you.   Ann

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