Pre Diag and have questiins

Robbie Lowery

Hello,

I just had cinsult with ENT today for his exam and to go over CT results.

He advised he thinks it is Cancer and could not advise further. He suggested a biopsy for next Thursday to remove material from swoolen nodes in my neck. He is removing from my throat area and from masal area next to my uvela.

 

I am scared out of my mind.

Please help

wbcgaruss

Robbie Welcome

To the H&N forum.

We know where you are at we've all been there and the first thing to tell you is to be as calm as possible to think rationally. The next thing I would like to tell you after reading your post is it's not cancer till they say it's cancer. The CT scan shows the likelihood of cancer. The biopsy they take verifies that it is or isn't cancer and if it is what kind so they know how to treat it. So you don't have any verified cancer yet. I know that doesn't help your nerves because you are then still in the unknown. I will say I have seen cases on here where people were absolutely sure the lump, or the swelling, or the pain in their jaw was surely cancer and it turned out to be some sort of an infection or inflammation of some sort, or something else. So there is a chance either way.

So let me say if it does turn out you have cancer treatment today compared to even 5 years ago is greatly improved so the likelihood of you or anyone else beating it is an extremely high success rate as testified by the numerous survivors on here. I myself have had cancer 3 times and am still here to tell about it. Many on here would tell you to go to a major cancer center or teaching hospital that specializes in cancer treatment in general and head and neck specifically if you can.

After you get your biopsy done and go back to your ENT for the consult and any meetings related to this take along another person as 2 sets of ears are better than 1 and in your state of mind will not remember or retain information. Also, take along a tablet and writing device to take notes so you can refer back when you get home and are rethinking some of the things the doctor and you have gone over you can look back over your notes. Also if they will let you video your meeting or at least voice record it. There is a good android app called, surprise, Voice Recorder and I am sure Apple has one too.

I am sure others will be here with more advice for you and I hope this helps.

Wishing You The Best-Take Care-God Bless-Russ

ozymandible

I second what Russ said.

I second what Russ said.

It's not cancer until they say it is.

I had biopsies for about 15 years before I was actually diagnosed with cancer.

Take it easy-wait and see.

 

Robbie Lowery

ozymandible said:

I second what Russ said.

I second what Russ said.

It's not cancer until they say it is.

I had biopsies for about 15 years before I was actually diagnosed with cancer.

Take it easy-wait and see.

 

The unknown is consuming me.

The unknown is consuming me. Trying to not worry and full of amxiety about getting the biopsy. I did google search so many things and  am so confused now.

 

wbcgaruss

Robbie Lowery said:

The unknown is consuming me.

The unknown is consuming me. Trying to not worry and full of amxiety about getting the biopsy. I did google search so many things and  am so confused now.

 

OK Robbie You Can

Stay off Dr. google now. There is good information out there and bad. There are certainly many cases of personal cancer journeys too but each one is different and so is yours. But as I said previously it is not even verified that you have cancer. Do Not-I Repeat Do Not let the unknown as you say consume you. Start talking to family and friends about it and when you are not keep busy. Let's face it even if you do have cancer then it is there now it's just not verified by a test yet. Let's say you don't have cancer and it's not there now it's just not verified by a test yet. All the worrying, all the googling, all the consuming of yourself will not change that one iota. So this is your time to use the strength, mental and physical, stamina, and mental fortitude to think and deal with this as rationally as possible not be consumed by worry, it accomplishes nothing. If need be get some short term counseling but in the meantime talk to friends and family, keep busy, and if you don't know God find him and pray and meditate on this-a lot. This may help you-

How To Wait For A Diagnosis Without Losing Your Mind

https://valeriemurray.com/waiting-for-a-diagnosis/

 

Also here is a page of search results under the same idea-waiting for diagnosis-

https://www.google.com/search?client=firefox-b-1-d&q=How+To+Wait+For+A+Diagnosis+Without+Losing+Your+Mind

Wishing you the best-Take care-God Bless-Russ

???

Logan51

Robbie

We've all been where you are now, and it is the worst of times with the unknowns. The mind fetches worst-case scenarios, and said are bogus. H&N has come a long ways in advancement to the better for Patients. Bottom-line: all you can do is wait for the Dr.s to give you their treatment plan IF it is C, and worrying serves no purpose. That's life, Robbie. We are all Survivors, here (I'm over 12 years out to the good), we've been in your shoes, and looking back understand why we were so concerned, but now know we shouldn't have. Again, that's the reality of our lives, as, unfortunately, it might be for yours.

Keep us informed on your status. And, yes- what Russ said.

wbcgaruss

Thanks Logan

For your additional information, very well stated.

Take Care-God Bless-Russ

BeagleDad

Info Gathering

I get it, I understand.  We all do here.  That is the beauty of this forum.  Many will tell you to stay off Google..but how can you?  You want research, studies, information .. you want to learn what are these different body parts, how these cancers spread, etc.  I get it.  Internet searching definitley has its place.  But for right now, I'd recommend you stay right here..there are DAYS wroth of reading ... some that will scare you stiff, others that will cause you to rejoice, and some that will make you think you are standing on train tracks and this huge locomotive is headed right for you and there is no way off.  THAT is exactly how I felt.  I read about the folks with tubes, inabilities to drink even siups of water, loss of taste, scarring, and much more and did NOT want all that to happen to little ole me.  

But those things were out of my hands. 

There is no one in this forum that has not been there in one form or another.  There are many here still going through treatment or staring down the same sets of tracks you are.  No one here is going to chastize you for feeling sorry for yourself, feeling sad, whining, being curious, wanting information.  

We are not doctors, we are survivors.  We have gone through all the things you read here.  No, it is NOT fun.  In fact there are days when I just sat back and cried wanting it to all be over.  I kept joking with my wife every time I would wake up from another short nap, "Is it Feb 26th yet?"  I just wanted to sleep it all away.  But just like those that went before me, that time really was just a short blip.  7 weeks of radiation seemed like months.  But indeed, it was just 7 weeks.  I am 4 months post treatment now and except for my journals and writings about the experience (while I had the energy to journal) I cannot remember much of it.  I just remember feeling like I was on someone else's treadmill...completely out of the decision-making realm of my own choosing.  I did what the doctors and care team told me to do when they told me to do it... get up, shuffle to the car, get driven to radiation, shuffle back, go home, apply 3 different lotions to the area, plug in my gravity feeding bag for hydration and sometimes nutrition, try to sleep, pee (a TON), go back to bed, repeat, except for 6 Thursdays when it included an all day stay at Hotel Chemo.  

I lived, as some say, in the fog of chemo and radiation.

But it ends.  And for a great many of us it ends with life.  

Here are some observations I have for you from MY experience:  

1)  Keep a log or journal and one of the things to enter after you start chemo/rads is when you poop.  I know it sounds weird, but in my case, I did not realized I had not for 3 days and by then I was already adding to all my other pains by being constipated - address that right away; I spent 3 weeks trying different meds to help before finally solving that issue....I was in enough ick and pain already ..adding to it by the bloating and belly issues was BAD

2)  Keep on docs for pain meds.  My guy gave me liquid morphine after Week #3.  I did not use it much but having it was great..that and Benadryl helped me fall asleep..and like I mentioned, I wanted to sleep through it

3) Follow Piplillys moisturizing routine.  It worked great for me.  Non alcohol aloe directly after treatment.  Pure coconut oil mid day.  Aquafor in the evening.  I did not ever use the entire bottle of either.  

Wea ll have advice and recommendations based upon our experience but remember thateveryone's cancer, treatment and experience is different, no matter how close our symptoms.  Mine was left side tonsil that had moved into lymphs.  I had TORS surgery that remvoed the tonsil and then they did a radical neck dissection and took 4 lymph nodes.  They found some cells under the tonsil which precipitated the chemo/rads.  Wait to see IF you have cancer, and then if, where and then we can help you understand what you face a little better.

But by all means, stay in touch with the folks here.  No one here will lie to you, nor sugarcoat.  Since we have been through it, we have a deep seated desire to share our experience and help others.  We all have questions and want to be prepared, and this is the best place to get those answers and ideas for preparation.  But also remember we are NOT doctors, just survivors.  Don't mistake our advic for professioanl medical advice.

I hoep this helps...and if you do have the cancer, don't be a stranger.

Don aka Beagledad

Robbie Lowery

I really would like to talk

I really would like to talk to someine wha may have experienced the same type of swollen lymph node, so I can understand it.

 

motorcycleguy

Robbie,

I had swelling in my neck. Your Doctor will likely schedule an operation to remove it.

At that time, they will send a sample of it in for a Biopsy.

If the Biopsy comes back '"Benign" you're good to go. If it's not, you may need to get some further treatment.

My advice is to not worry about it (as much as possible), until the result of that Biopsy comes back. I know that's hard to do - but it's really the only answer.

In general, the internet will have a lot of information that will just scare you. Try to stay off of it ... again - until the Biopsy comes back.

Even then, you're probably better off getting answers here. But, that's your call, of course.

I wish you the best possible outcome!

MG

johnsonbl

Will second what most have said...
It's pretty hard to stay off google but you WILL tend to worry more about the worst of the worst...when in fact you'll probably end up like most of us, having made it through and now life isn't that different than it was before.

I had the same as you...swollen lymph node. They did a CT then sent me to ENT. ENT recommended a biopsy where they did a fine needle aspiration (sucking the juice out of the swollen node....it was no big deal at all). Then they test that for squamous cells and likely for HPV. At that point they'll really know whether it's cancer or not. Then they will try and find the location of the actual tumor. If you are HPV+ it will likely be in one of your tonsils or at the base of your tongue. If it's not HPV then it might be in other spots. They'll probably do a PET scan to try and find the tumor.

After that all depends on what type of cancer and whether they find where the tumor is... So, don't get too far ahead of the process. It doesn't do much good.

Good luck and come back here often. It s a great source of info.

Brandon

SuzJ

My neck

I referred to it as "growing a second head"

Don't google, really, just don't. I did, and I was lucky, I found myself here, but I also hit some sites that said my mortalitaty was only 25% - WHAT????

If you have HPV, you are 95% ish (may have changed) chance of a full cure. It won't be pretty, Cancer never is, but it's doable, YOU can do it, and we'll be here to help.

Robbie Lowery

Spoke to my PCP last night. I

Spoke to my PCP last night. I explained my fears to him. He did say that he was looking at CT while we were talking, and.said the Raduologist stated the bad area did not reach vocal cbirds and that we could likely rule out lung cancer and kymphima. He said he was nit 100 % sure but was confudant. He said we need tussue in a jar. He alsi mentiinr HPV but could not really say. He made a point to say he has an older kady whi survived head and neck, so I can do it too. I an sheduked for biopsy day after tomorrow. Very nervous.

 

Robbie Lowery

Can I talk to someone about

Can I talk to someone about this? Maybe someone who may have experienced this?

johnsonbl

Robbie Lowery said:

Can I talk to someone about

Can I talk to someone about this? Maybe someone who may have experienced this?

Sent you a message...

.

Robbie Lowery

johnsonbl said:

Sent you a message...

.

Sorry, your message did not

Sorry, your message did not come thru.

LitlCJdoll

johnsonbl said:

Sent you a message...

.

Lots of waiting....

Hi John,

I am communicating with Robbie, too.  On the subject of Waiting for Path reports to come in, there is also this sort of Gray area, at least in my case of having many recurring tumors. 5 recurrences and a New Primary after my radiation treatments.

A few of mine came back initially as Atypical squamous proliferation...but technically benign. Okay, they were evolving / devolving into malignancy. What happened is, after the biopsy and that first result, the tumor would begin growing like crazy, and invade surrounding tissue. They obviously then biopsied it again and it was proven by 2 Pathologists to be SqCC, invasive with deep positive margins. This happened several times to me.

My R O told me I have what's called Field Cancerization. It's a concept that was put forth long ago....it describes the area as being in different stages of evolving into malignancy. So for instance, I have areas of Filmy Leukoplakia, some in Mild Dysplasia and at my vocal cords a mass in Moderate Dysplasia. Varying areas of pre- malignancy, which may or may not go full tilt.

I'm monitored every few months, and scoped a Lot !!  They biopsy everything they see, including ones I keep growing in my esophagus. My G I doctor biopsies those, during my esophageal dilations. I get dilated Every 4-6 Weeks. Sometimes he will let me go 8 weeks, like now .

 

My point is, it's all about the Wait.  Waiting for results of one thing or another. It's best to have good ways of coping, like hobbies, spending time with people, etc.

I must admit that I'm very used to it and I just stay cool...

Gosh, wishing I could do that today because it's 92* here !!   LOL 

Crystal

 

OKCnative

Robbie Lowery said:

Can I talk to someone about

Can I talk to someone about this? Maybe someone who may have experienced this?

I was in your position almost

I was in your position almost exactly 4 years ago.

 

I discovered an enlarged node in my neck. I finally found an ENT I liked and he suggested a biopsy right then and there. be prepared, it's very uncomfortable to painful. But not impossible. Also, my neck swole up HUGE after that biopsy And stayed that way for weeks.

 

ENT called me two days later and told me it was cancer. A biopsy of the actual tumor (base of tongue) 2 weeks later confirmed it was HPV in origin. That's actually good news, as it's far more receptive to chemo and radiation.

 

for me, I calmed my fears by simply embracing my cancer. My co workers even through me a cancer party with tongue tacos (they thought that was hilarious) and my favorite desserts.

 

I got smoothie gift cards and lots of encouragement.

It wasn't an easy road, but I made it through: 35 radiations and 3 big doses of chemotherapy.

 

I refused a PEG or a port. I also refused any surgery until after treatment. When treatment ended there was nothing left to do surgery on. 

In one more year I'll officially be 'in remissio.' You'd never know to see me that I ever went through it. In fact, within. A very short time after treatment ended I was back in a Mexican restaurant having chips, salsa and fajitas.

 

This is very doable if you keep your emotions in check.

 

good luck to you!