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Sunshine60
Posts: 76
Joined: Apr 2013

Hello all.  I have been coming to this board since February of this year after my husband was diagnosed with unk primary involving a lymph node in his neck.  Since that time, he has had surgery to remove the node while taking out 23 extra for a sample.  Those were all negative.  I remember thinking at the time how wonderful that was, but was discouraged to find that we WANT to find the primary site somewhere.  So, after we went to the Cancer Center and met with the oncology team, they made the decision to take the tonsils out this past weekend hoping we will find something there prior to starting radiation therapy. Pathology should be back this week.  In the meantime, it looks like the plan is radiation 5 days a week for 6 wks.  If we can find the site, at least they have a direction to go in!

While this is a family I did not want to be in, this site has given us both a lot of hope and answers too.  We have somewhat of an idea of what is up ahead, but appreciate that you are all here for us as we progress through this craziness.   So let me thank you all ahead of time!   We hope that we can be there for you also, even though we are new. 

Thank you! 

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Hello Sunshine...

Welcome to the board. If you've already been reading this forum, then you know the wonderful people here that are all full of advice and help along the way.

My loved one was dx in Aug '12 with BOT, 2 lymph nodes involved, Stage IV, HPV16+. His tx consisted of 7 wks Rads and Chemo (Carboplatin & Paclitaxel) and no surgery. He completed that about 4 months ago. The journey was a little rough, but completely do able. Anything is worth eliminating the beast.

When he was first dx it was due to a swollen lymph node. At the time we did not know where the primary was. His ENT suggested a scope/biopsy of the base of the tongue as his tonsils had been removed as a child. Sure enough, there it was. I wouldn't get to alarmed over not finding the primary, as some on here have never found there's and I've heard some say it may have irradicated itself. But, I do not know. Our doctors were set to move forward with or without a primary found.

You and your husband will find a lot of support on this forum. I was so glad I found it. These people who stick around long years after their tx to help others are just a God send. I, too, want to give back and help others any way I can. PLEASE feel free to ask any questions and others will chime in here anytime to give you some advice.

Looking forward to helping you through your journey.

~C

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

sunshine, i just want 2 say welcome.  u've come to a good place.  u can ask all ur questions here and get reliable answers from people who have lived it.  i'd stay away from the internet as that info is usually old and outdated.  you should be able 2 find all the info u need right here.  and from ur docs of course.  we'll be here to encourage u as the road gets rough and answer all ur questions.  i'm glad u found this site and look forward to traveling your journey with you.  keep us posted.

God bless,

dj

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

Don't be alarmed if the primary is never found. My husband's primary was never found and he is now cancer free 10 months out from treatment.

HelenBack
Posts: 63
Joined: Jan 2013

Unknown primaries seem to be very common. I sure hope they find it in the tonsils since they went to all the trouble (and pain for your husband) to remove them. 

My husband was diagnosed way back in January (SCC BOT T2N2bMO) and just today finished his 8th day of radiation. He's had one dose of cisplatin. So far so good, but thanks to these fine folks over here at CSN (more so than the doctors) we feel well informed about what is coming and have done all we can to get ready. 

What an amazing group of people, huh? As a newbie I feel that I'm unable to help as much as I'd like, but soon enough we'll be old pros. 

Good Luck,

Helen

 

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

Sorry you and your husband have to travel this road but happy you found us. The tx is hard but doable. It will go quicker than you think. My cancer was of the jaw but I had surgery, rads and Cisplatin and have had 4 clean scans since finishing my tx...soon to be a year. I suggest avoiding info on the Internet and don't fret too much about side effects that your husband may or may not encounter. Simply take it as it comes and deal with it. When you hit a stumbling block, ask for help here as one of us has likely dealt with the same situation. Prayers for an easy journey.

Candi

 

CivilMatt's picture
CivilMatt
Posts: 3088
Joined: May 2012

Hi Sunshine,

 

Welcome to the H&N forum, so sorry you find the need to be here.

 

Depending on the biopsy your plan is just about set and it will be time to rid your husband of his unwelcome intruder.

 

You may want to familiarize yourself with the information contained in the Superthread (top of first page).  It pretty much gives an overall picture of H&N cancers, from A to Z.

 

We all have been where you and your husband are now.  You will each have lots of questions and comments.  Feel free to ask anything, anytime.

 

Wishing you a smooth ride,

 

Matt

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

as several have said above, don't be overly alarmed by the lack of a discernable primary.  This, plus a node, is actually a classic HPV+ scenario, and has an excellent cure rate.  Yes, they will do some more tissue samples to try to find a primary, because that will alter somewhat their radiation treatment fields if they do.  But lacking  a primary location, they are still able to treat, with very good results.  

 

Pat

Roar's picture
Roar
Posts: 250
Joined: Mar 2013

Hi sunshine! I am 4 months out of treatment and was also an unknown primary. Hope it all goes well for you guys. Yes I think its better to have the primary but like my doctors say a strong immune system could have destroyed the primary site.hang in there and keep roaring

Duggie88's picture
Duggie88
Posts: 570
Joined: Feb 2010

Welcome to our unique club. Your going through the initiation as we speak but the nice thing is..................all the folks on here WILL help you and your husband get through it. It is a rough road but we are all here to fill in the potholes as you travel. Don't be afraid to ask questions we all had them.

 

      Jeff

Sunshine60
Posts: 76
Joined: Apr 2013

 

I feel incredibly lucky to have found you all.  The wait between each process i.e finding the lump, going to Dr, CAT Scan, biopsy, path report, then referral to oncology has been paralyzingly at times for both of us.  As many do, we searched the Internet and became even more horrified.  I will never go anywhere else again other than here. I feel like I know many of you as I followed your good and bad days.  This only showed me that no matter how hard this becomes, it is doable one day at a time. I'm sure we will have questions as we go along.  *HUGS* from us to you!

HobbsDoggy
Posts: 165
Joined: Feb 2013

I had same deal.  They never did find primary for sure.  Had a good guess after radiation started as there was a spot that was very inflamed which aparently is an indication of the primary.  They did the treatment to catch he entire neck area just in case.  Treatment is rough and side effects are hard to handle but they are all doable and they slowly but surely go away.  So far so good.  I found this site and a local cancer support group to be very helpful. 

HobbsDoggy
Posts: 165
Joined: Feb 2013

I had same deal.  They never did find primary for sure.  Had a good guess after radiation started as there was a spot that was very inflamed which aparently is an indication of the primary.  They did the treatment to catch he entire neck area just in case.  Treatment is rough and side effects are hard to handle but they are all doable and they slowly but surely go away.  So far so good.  I found this site and a local cancer support group to be very helpful. 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Sunshine60,

First welcome to the club everybody loves but nobody was ever hoping to belong to! My primary was found it was NPC stage 3, i'd spell it for ya but can't spell, walnut size tumor in nasal cavity, quite a few of us on here suffer from this one. I am a 12 yr survivor in my 13th yr. I joined in Jan due to some late term affects. I had never had any desire to be part of something like this and never once in those years looked for one. Then after a set back with late term rad effects hit hard inDec I believe in my heart Jesus brought me here. I've have never been around so many people that understand me, are compassionate, helpful, loving and willing to do just about anything they can to help you out. We are a family on this site, and sunshine60, we just added one more! I hope pathology comes back with a finding for you so rads can be more directed, but either way, although as you've read tx is the pits, it is DOABLE AND BEATABLE! Stay positve and pray!

Anything I can offer please don't be afraid to ask!

God Bless you both on this journey,

Rachel

Ruben and Jude's picture
Ruben and Jude
Posts: 154
Joined: Apr 2013

Hi Sunshine,

my husband and I are new as well. Ruben had his tonsilectomy on March 22, so I know what you and your husband are going through, and believe me, the tonsilectomy was, so far, the worse thing he has endured. It took about 3 weeks for him to start feeling like a human again!

He had a feeding tube placed last week, which we are determined NOT to use! And he had his first chemo and radiation treatment today, which went super well. NO nausea, eating well and said the radiation didn't bother him. One good day at a time. Amen!

Like the others have said, sorry you have to be here, but it is the best place to be. SO many helpful hints, remedies and advise. Sometimes the comments and experiences can be a bit scary, but at least you'll be prepared with all the gadgets, lotions, potions and tricks to help with the results of treatment. We're all in this together. You are not alone. All the questions I've asked have been read and addressed. It's the best feeling to know that there are people out there who care to take the time to help and encourage you.

Take care, God Bless. Hugs and prayers coming your way.

Ruben and Jude

Sunshine60
Posts: 76
Joined: Apr 2013

Wink

I will  be curious to see what the Oncology team recommends as far as the PEG - we are meeting with them next week to discuss radiation schedule.  I know some like to put in prior to tx and others wait.  By the way, my husband ended up getting thrush with his tonsillectomy!   He said his tongue hurts far more than his throat at this point!  Thinking of you as you get through each treatment- we aren't far behind.  Hugs back To you and everyone on this board :)

Sunshine60
Posts: 76
Joined: Apr 2013

Wink

I will  be curious to see what the Oncology team recommends as far as the PEG - we are meeting with them next week to discuss radiation schedule.  I know some like to put in prior to tx and others wait.  By the way, my husband ended up getting thrush with his tonsillectomy!   He said his tongue hurts far more than his throat at this point!  Thinking of you as you get through each treatment- we aren't far behind.  Hugs back To you and everyone on this board :)

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

that was me 17 years ago, the could not find the primary even after another search while being knocked out. 

never in my wild dreams did i expect to make one year, then it was 4 years and my girls graduation, then 8 years later and college graduation for college, both married and now three grand children. 

Sunshine, your in the right place for help and will be here for many many many years to come. 

john 

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

that was me 17 years ago, the could not find the primary even after another search while being knocked out. 

never in my wild dreams did i expect to make one year, then it was 4 years and my girls graduation, then 8 years later and college graduation for college, both married and now three grand children. 

Sunshine, your in the right place for help and will be here for many many many years to come. 

john 

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

and No Problem ahead of time, LOL....

Sorry I'm late to your party, but Welcome to the Family...

I'm pretty sure that most of my fellow clan members have answered your immediate questions. As other questions/concerns pop-up, please ask away...

Best,

John

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