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New diagnoses with not enough info

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Hi,

My husband had a cervical lymph node that showed squamous cells via FNA. I still can't catch my breath and feel like the earth just disappeared under my feet. He has swollen left tonsil on the side of the lymph node and a cough.....but that is all. His bloodwork is perfect. I am petrified to find out what the primary site was. He is scheduled for a pet scan on Thursday and then OR scope/biopsies on Wed. Where can the primary be from????anywhere??? We are so scared. I forced myself to eat breakfast and then promptly threw it up. We are not coping well. Any info/support for dealing with the uncertainty of the primary site or what tests to ask for would be so helpful.

Hard12Find
Posts: 195
Joined: Sep 2012

Washington State here, sorry you have had to find us, but let me try and help, and trust me this is the place to be, since you are where you are.
First of all... Take a deep breath......and know that there are a ton of survivors including myself that have had identical diagnoses to what you have just learned. I know it is hard, I got mine August 8th 2012, and am in my last week of treatments, and although hard it is doable. My right tonsil was the primary tumor, and it had spread into the right lymph nodes, and also locally metastisized to the left lymph nodes not as strongly, that gave me a stage 4 A cancer classification. What you need to remember is that head and neck cancers are not classified the same as other cancers, so it's not as bad as it seems.
I know things dont seem to be moving fast enough right now, but it is a process, and just make sure you have a good feeling about your oncologist. The pet scan will clear up most of your questions, but it looks like you are headed the right way. Grab a notebook ad when a thought or question crosses you mind right it down and ask your health care professionals, or on here for second opinions.
Don't buy trouble you don't already have, don't worry too far ahead....Make that man eat every fattening thing you can stuff him with, his goal should be gain 20 lbs by ice cream and any other method prior to going into treatment, he will thank you for it later. (I have lost 50+ lbs).
A very general list of things to expect will be to have your PET scan, receive a treatment plan ( likely 7 weeks of daily radiation, and high or low dose cisplatin chemotherapy concurrent with radiation) a gastrointestinal tube installed, a medical PICC line for IV fluids and chemo installed, and lots of appointments with speech and swallow therapy, audiologist, nutritionist, and others.
Get the PICC and GI tube as soon as you can, as it will give him time to recover before moving forward with the fight.

Know that myself and many other people on this site are here for you, and want you both to be sucsessful. Tell us a little more about your Husbands demographics, age other health concerns etc....

Live it one day at a a time.
Jim

hwt's picture
hwt
Posts: 1655
Joined: Jun 2012

Don't read too much on the Internet. Take it as it comes and deal with it. Try not to worry about the unknown. Know that your husband will get some side effects but not likely all side effects so don't needlessly worry about something that may not occur. Great idea to write down questions for doctor appts. even better, take an extra set of ears, someone that can remain calm and take notes for you.

luvofmylif
Posts: 344
Joined: Sep 2012

Sorry to hear what you are going thru but it sounds all too familiar to me. My husband was diagnosed with stage iv tonsil cancer in July of this year. Literally one day he was fine and was diagnosed the next day...he ran a fever one day and I sent him to the Dr who discovered enlarged cervical lymph nodes. The next day he had a CT scan and within a week had a biopsy which showed SCC . The next week he had a PET scan which showed the primary to be tonsil but it had also spread to the base of tongue. He was in great health, took no meds, went to gym every other day.

I have been pretty much in shock since and I tell you this so you know you are not alone. Finding the primary is essential so they can develop the proper plan of attack and the good news is that this cancer can be treated and has a good outlook, especially if it is HPV positive. In the following weeks you will probably be learning alot about his cancer. The people on this site will be a great help to you and also, let the medical professionals guide you and help you. This is what they do and know. Also, take what people may say to you with a grain of salt.

I , too, was scared to death and sometimes still am but all of the kind people on this site will offer wisdom and sanity when you need it. Good luck to you and keep us updated.

Joan

Praying for you and your husband.

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Thanks so much. Is the PET scan what will show where the primary is? How long did you have to wait for the PET scan results....waiting is the hardest so far. I so appreciate your support.

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

I am so grateful to have found this site. It's the best thing I have found on the internet. And I have made a vow not to "research" anymore until I get more information about what we are dealing with. Jim.....your words are so comforting and real. I can't thank you enough. My husband is 41. He had a cold a month ago and a cough that never seemed to go away. Overnight his left lymph node swelled up. He went for contrast CT that indicated likely infection but differential neoplasm. They scoped him in the office and saw nothing suspicious except left enlarged tonsil. They were all set for surgery until his bloodwork came back normal (perfectly normal....differential and all). So....they opted for FNA via CT. THe surgeon told us there was a ton of pus. THe path report saw squamous cells. So....we got the call "squamous cell carcinoma". Thinking that is has spread from who knows where is terrifying. REading prognosis on the internet is awful. My head is in a fog. I have a 9 and 11 year old that I have to stay strong for not to mention that I am trying to hold my husband up too. His dad was 40 when he was diagnosed with leukemia and died at 42. My husband was a teenager. So.....there is a TON of PTSD and guilt over what our own kids have to go through. I just want to get him the best care, make the best decisions, and fight fight fight. I want him around.

Thanks for the practical advice about tubes, etc. Unfortunately this all started with a visit to his MD for high blood pressure and he has been religously exercising and has lost 10 pounds. TIme to bulk up I guess if we can find a way to keep anything down with our nerves.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

yes...this is a good place, isn't it?

good advice to not do too much research. or at least stick to looking up medical terminology and avoid scary statistical prognosis stuff.

seems to me (a medical non-professional) that the overwhelming thing in your favor is that you apparently caught it early. compared to me, anyway. my own SCC of the left tonsil was well advanced, with tumour down into my throat.
if your husband isn't a smoker...HPV-associated oropharyngeal cancer is increasing rapidly. the good news is that HPV-associated cancer is eminently treatable.
if he hasn't been a smoker, they may be able to confirm by running an HPV DNA test from a biopsy.

phrannie51's picture
phrannie51
Posts: 3415
Joined: Mar 2012

is stay off the internet for your research...BUT, come here to get re-grouped, daily if you have to.

I was diagnosed last March with Nasapharengeal Carcinoma...I had enlarged lymph gland on the right side of my neck...the Dr.'s messed around with that from Jan. till March before sending me to an ENT...a FNA, behold it was SCC. I did the internet thing and scared myself to death, then I found this site and have been here everyday since. VERY knowledgable, supportive, kind, and positive people here.

This is is not the end of the world, tho it certainly feels like it. I finished Radiation in June, and finished chemo on August 28th...I have since gone back to work, and it feels like it was all a bad dream. You'll find many people here who's story is much like mine...they went thru treatment, then got back up and picked up their lives...It's all scary as hell, I know...but once the Doc's get moving on treatment, it becomes at once..a whirlwind, and a methodical everyday same scene kind of thing...it is tough, but it is doable.

Hang in there...it's going to be ok....

p

CivilMatt's picture
CivilMatt
Posts: 2649
Joined: May 2012

Hi Vermontgirl,

I am sorry you find yourself here, but it’s the place to be for perspective, advice and understanding. Each of us has traveled your road and we identify with your fear and confusion.

This week is the anniversary from the day I felt a lump on my neck while shaving. It turned out the primary was on my lower tongue, I felt nothing, never have and still don’t.

As for the PET scan, if he is anxious see a doctor about some Lorazapam. I experienced my first panic attack of my entire life during the scan. I made it through alright, but from then on I was prepared.

Try not to borrow trouble, don’t over read the information out there. That crap still scares me. Go to the Superthread (top of the page) and breeze through it, there is a lot of good information there. You will both be ok and will get through this in one piece; it is rough, but not insurmountable. I am far from the bravest person among my H&N friends and warriors and I made it through, so can you.

Best,

Matt

luvofmylif
Posts: 344
Joined: Sep 2012

Yes, the PET scan will reveal the primary except in some instances where the primary is never found. We received our results the next day. And, just like blackswampboy said( sounds funny saying that) you probably caught it early...my husbands also had spread not only to lymph nodes from tonsil but also down the throat to the epiglottis with no symptoms at all.

I can so relate to what Matt said..the day of the PET scan I lost it and also had a panic attack...my husband was calm but I was terrified. It wasn't the last day I was terrifed but with time comes acceptance and a little bit more calm. Up and down is my new normal though.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our little club, sorry you found yourself needing us. First off let me say, take a deep breath and know that you will get thru this just as many of us have. I was dx stage IV laryngeal SCC with node involvement. I was HPV negative and I've never smoked. I mention the HPV negative part because we hear so much about treatment having better outcomes if it's HPV positive but I'm here to tell you that my first post treatment scans show all clear, no signs of cancer/tumor.
I'm sure you will get your PET results rather quickly, perhaps the next day. Express to your doctor that you are very concerned and would like to hear the results as soon as possible. Maybe that way you can get an appt sooner rather than later.
I am a mother of two boys 17 & 11 at the time I was diagnosed in March 2012 and all I could think were the worst and scariest thoughts so I totally understand where you are coming from. Treatment is not pleasant but doable. Now when I look back to just a few months ago it seems like a whole other time in my life. Your husband will be healthy again after treatment, he is just going to hit a major speed bump but again, doable. We are all here to help you with our advice on what worked for each of us and just to listen to you when you need it. I don't know what I would have done without my CSN family.
I must say, the advice for your husband to try and gain weight is great advice. It is going to make things much easier for him during treatment, wish I'd known about that before I started treatment but sadly I found this site at almost the end of treatment....see you're ahead of the game! The other thing I can't stress enough is to stay off of the Internet!!! It really can play tricks with you and make you second guess everything. I'm proud to say that I didn't do one single search during my treatment until after treatment but before my scans and I had myself all convinced that treatment probably wasnt successful for me since I was HPV negative. Don't do that to yourself, it's not worth the stress it will cause you.

Come on here often and ask any question you have, none are silly or stupid.
Do your best to enjoy this time before treatment starts and you find yourself going from one appointment to the next, it's going to get busy!
Take care,
Billie

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

Billie. When I brought up HPV, I certainly didn't mean to suggest that HPV-negative means lower chance for full recovery. especially for a non-smoker such as yourself.

but if he's HPV-positive, that pretty much takes care of primary worries. there aren't very many primary locations for HPV-associated cancers: throat (common), cervix, anus (rare). that's about it. and if the primary is in the tonsil/throat with early detection, time to be optimistic.
me, I'd still try to get the test.

best, Douglas

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Of course I didn't think you meant anything by that, not in the least bit. I was only remembering when all I kept hearing was HPV+ tends to have better results and knowing I was HPV-it scared me. I just wanted to pass along to her that should her husband be HPV- he still has very very good chances of kicking cancer right where it counts. Sorry if I came across any other way with my post :-)
Billie

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I read/heard the news, too. I was totally dejected when I found out I was HPV negative - I had convinced myself that my chances of survival would be much better if the test came back positive. Luckily, like Billie, I also got the "NED" from my doc.

ditto1
Posts: 628
Joined: Mar 2012

Just wanted to welcome you and reiterate what others have said, that A:Stay away from GOOGLE searches for this cancer and B:come here with any and all your questions. I to was DX back in March and joined the site at about the same time as P51 and we both jumped on the bus together and have been here every since. I and my wife both come to this site everyday and thru out the last 7 months have not missed a day, if I was not doing well she would check. You will get both technical responses, humor, tears etc. I have had my hand held thru this hole process, if we had a question these great folks would offer answers. If I was sad, they lifted me up. I was dx with Base of Tongue, Stage IV with lymphnode involvement, HPV positive, had chemo and 33 Rads. So far last CT scan showed NED and hopefully my PET scan in December will as well. So thanks for listening or reading I should say. God Bless you and your family

Hard12Find
Posts: 195
Joined: Sep 2012

Thanks for the reply, i would say you caught this really early, I had a sore throat in December of 2011, with a tonsil that never stopped being swollen, not really sore just an annoyance. I waited until August to have it checked, so your quick actions, and your husbands youth will play strong in your favor......
Jim

jcortney's picture
jcortney
Posts: 371
Joined: Sep 2012

Vermont,

You are in the best place you can be. I am early in my treatment for Squamous of the tongue and lymph nodes on both sides and responding well.

Here's my advice, don't let the Doc's rush you into a treatment. What I know now, is that every doc I saw (surgeon, Oncologist, Rad Doc, MD Anderson, all five Doc's) all wanted me to start treatment with them NOW! The surgeon had compelling reasons on their side (most of which was reduced rads and chemo), the Chemo/RAD doc's had statistics on their side and MD Anderson had their reputation (if not a bit impersonal). At any rate, my wife and I felt immense pressure to choose and choose right then.

Don't get me wrong, I think I chose well but I wish I would have taken more time and checked out Johns Hopkins or Mayo Clinic (for Surgery). At any rate, don't panic, most of what we have here is very curable especially in your case as it seems it was caught early.

Best of luck to you and we'll all be cheering you on.

Joe Cortney
Dallas, TX

ac_scott
Posts: 9
Joined: Nov 2012

I had a Multidisciplinary Consultation, Onc Head, Onc Chemo, Onc Rad and Onc ENT. Each discussed the pros and cons of how they would treat my Dx in their speciality. Nice round table discussion, and decided on Rads with 3 Chemo just because. And currently the Chemo Dr is saying if we need it we can catch up, don't worry. I highly recommend the Multidisciplinary Consultation. Everyone in the same room at the same time, just makes sense.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I'm 16+ years past treatment and still walking above ground. It is scary, stressful and you will get tired and your husband will worry more about you than himself. Take it one day at a time. Read these posts so you will gather an understanding of the timeframes when some encounter different problems dry mouth, Thrush etc. Know it is coming, pray it doesn't but be ready to fight back.

We will all be with you through this journey.

Denny

VivianLee5689's picture
VivianLee5689
Posts: 541
Joined: Aug 2012

My husband was diagnosed stage IV Base of Tongue with lymph node involvement in July of this year. We have had several setbacks on our journey and will finally start chemo on Thursday. We are in our second week of radiation now. What I can tell you is the people here are the very best. The listen, offer practical advice and are very encouraging. If you go back and read my initial posts I sound very similar to you. I could not fathom David having something I could not control. I have learned (not quickly) that you have to go day by day. Trying to get ahead of the game doesn't get you far. Everytime I thought I had something figured out David's body would not cooperate and I would start all over. People told me to not borrow trouble and they were right. I am not saying that this journey is easy (It is the hardest thing I have ever emotionally been through), but it is doable and having the support of people who have survived and still remain positive has helped me tremendously. Once again welcome to the group.

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

So I wake up this morning after trouble sleeping all night....hoping for a new post to read.....and there are so many! I can tell....I will be here often. People say that it seems we caught this early, but honestly I don't assume anything anymore. What worries me now is this cough my husband has. He had a scope in the ENT office and all they saw was enlarged tonsils...nothing else amiss. SO, I worry that the pet scan tomorrow will show lung cancer as the primary. I don't even know if squamous cells can travel from there to the nodes. But....I am trying to do what so many of you say and not borrow trouble and just go by what we know today. He has scan tomorrow and we will find what we find (or maybe nothing). Thank you all so much so your encouragement and advice.

phrannie51's picture
phrannie51
Posts: 3415
Joined: Mar 2012

is a learning curve...afterall we're human, and we're used to having some type of control of our lives...It takes a while to learn to get up and face this day only, leaving the tomorrows to take care of themselves. Ah, but once we get on the one day at a time train, life gets easier...It's harder on the caregivers than it is on the patients.

Scan time is stressful, they even have a word for it here "scanxiety"...there isn't a person here who hasn't felt it...I'm even feeling it 2 weeks away from my first one which isn't until the end of this month. But I force myseolf to put it away, because today is ok, and I hate being caught up in the what-if's...they make me crazy.

I'm not a Dr. and I'm sure not the most knowledgable person on this board, but so far I've never heard of a case where lung cancer was the primary for throat cancer. Waiting is the hardest part of all of this, I swear. The six weeks it took to get from diagnosis to the beginning of treatment just about drove me over the edge....the folks here kept me hanging on...You just keep checking in, verbalizing your fears, and pretty soon the fear disapates...

p

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

Don't be alarmed if they can't find the primary. My husband had oropharyngeal SCC, diagnosed earlier this year when he had an enlarged lymph node in his neck. The PET scan indicated base of tongue for the primary, but when the ENT went in to try to get a biopsy, he could not find a tumor. This scared the crap out of me! How do you treat it if you can't find it??!?

Well, they did treat it and now the cancer's gone. Two lymph nodes in his neck and his throat were zapped with 35 rads, he also got 6 sessions of chemo. He was 38 years old when this all started.

The treatment is brutal, no question, but he got through it and is fine now. It's almost like it never happened. Hang in there, you'll get through this.

luvofmylif
Posts: 344
Joined: Sep 2012

I felt the same way while waiting for my husbands first surgery and then later waiting for chemo and radiation. But, now we are almost done with radiation and chemo. So, one day at time works. I just have to remind myself of that everyday, especially the last thirty days of radiation. So, your husband will get there in due process.

Skiffin16's picture
Skiffin16
Posts: 8024
Joined: Sep 2009

First and foremost....take a deep breath and know you will get through this...we all have walked in your shoes.

Like your hubby and you...

When I first found out and heard those words...STGIII SCC Tonsils and a Lymphnode, HPV+. It was devastating...no history in my family what so ever,.

Like your hubby, other than a slight irritation in my throat, I was in perfect health...., well other than having cancer, LOL.

As for the PET and a primary site...for me the primary was the tonsils, lymphnode was secondary.

Some people never know or find the primary, but their treatment, and recovery are every much as successes as those with known primaries.

You can get the results from the PET as early as 24 hours, usually it's anywhere from a few days to a week and results are given with a visit with your MD to discuss.

Anyways, please try to calm down, and get your mindset for the war on cancer.

We do have a SuperThread that offers tons of very useful info, maybe not as much now for you as in the near future...

SuperThread

Again, welcome....

Thoughts and Prayers,
John

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