Opinions from people who are or were in a similar situation (NX wait and see)

JAL23 · October 2017

Hi all,

Where to begin! I received a diagnosis of T1 tongue cancer after seeing 6 different Dr.s who refused to biopsy my tongue for fear it might "delay the healing process". I am 29 years old (28 at diagnosis), never smoked and occasionally will have a beer with friends. I have a feeling that my background information was what made all of the Dr.s so skeptical. My tumor was completely removed with surgery, and after a partial glossectomy I am missing about 10% of my tongue. The report said that the margins were clear, that the tumor itself had a depth of 2.8mm, and the tumor itself was T1 and superficial. The only thing that came back as puzzling was that the cancer itself was poorly differentiated, which both my ENT and oncologist say is irrelevant given the context of the tumor. The tumor was also HPV negative.

This all happened back in February - a month after accepting an offer for a tenure track job in the beginning of the fall. My wife (got married in Sept, what a whirlwind of a year!) and I were quite nervous at the time about what the course of treatment would be. Would I be receiving radiation therapy? Chemo? Further surgery? I anticipated from Dr. Google that at the very least, I would receive a neck dissection and radiation with a possibility of chemo. My oncologist, ENT, and a few other Dr.s who weighed in on the decision decided that, given the superficial nature of my tumor, that radiation and chemo would not be needed unless it metastasized to my neck. It was communicated to me that typically they start worrying about local metastasis with a depth of 3. Since I was so close to that number, my Dr.s agreed to take a wait and see approach, essentially closely monitoring the lymph nodes on the right side of my neck through regular CT scans and feeling them. In particular, my oncologist felt strongly about not doing an elective node removal or getting a PET scan. He said the way we would catch this is through the contrast CT scans of my neck. This seemed to contradict information I was reading online, but again, I trust my Dr.s decision making far more than generic online information. All communication seemed to suggest that I may very well have dodged a bullet.

I wish I could say this was the end of this awful journey and I could just move on as though nothing ever happened. Unfortunately, that rarely seems to be the case. About 4 weeks ago, a lymph node right under the corner of my jaw blew up - incredibly painful, but hard, unmovable, and rather stone-like. I immediately contacted my ENT who put me on a course of antibiotics and steroids to try and reduce the inflammation. Nothing. It simply got worse. Second round of steroids and antibiotics. Nothing again, but increasing in pain and size. at about the three week mark, my ENT sent me for a immediate CT scan, which revealed that the one lymph node was 3.5cm (holy moly!!!) and that the entire side of my neck and jaw had statistically inflamed lymph nodes. Immediate FNA biopsy of the largest lymph node, which came back as negative for cancer, showed normal healthy cells with some sort of indicator of reactive rather than cancerous material in the cell samples. He said the fact that it was painful was a good sign, but I still am unsure if the pain is from the node itself or the muscles it's pushing on. My jaw hurts, my neck hurts, my throat is soar,

If this does not go down in two weeks, my Dr. is going to stick me again with the FNA and see what happens. At that point, he said we would discuss the possibility of removing the largest lymph node, with the intention of removing everything if it is indeed cancerous. What a horrible position to be in - I might wake up and need a few days of recovery vs. an involved 5 hour surgery with an intense two weeks minimum recovery and an overnight in the hospital. Psychologically, this NX just seems like the worst and most uncertain thing that's happened to me. I imagine if this giant lymph node winds up being cancerous, that would bump me from a potential Stage 1 right to a Stage 4. Maybe had I just gone ahead with the neck dissection, it would have been Stage 3 with a slightly higher survival rate. Were my Dr.s wrong in this decision making? Should I have sought out even more opinions? Should my treatment have been more aggressive? I can't make sense of this and it's eating at me everyday I have to deal with this giant node in my neck.

It just sometimes feels like everything about this journey is dragging my wife, my family, and my colleagues at work through the mud. It's really hard to get out of this headspace sometimes. It's frustrating when I let people know what happened, and they respond "you are far too young to have health issues" or "You'll be fine because you are a healthy young guy" as though this wasn't a life threatening diagnosis.

I am not necessarily looking for a specific response, but at least some opinions, thoughts, or anything that I might find useful. Thanks for taking the time to read my rambling story.

Curlyn · October 2017

I am sorry that you are going

I am sorry that you are going through this! The only thing that I can add is that when my neck node enlarged, it was acute, painful, large and because of the intense pain thought it was infected. Biopsies did not show cancer, 3 were done plus a large incisional biopsy. We watched and waited. The cancer spread. If I had it to do over again I so wish that I had asked to just remove it. I am not trying to scare you but I find that you have to research, ask many many questions and be your own advocate. Your doctor sounds as if he is being proactive and ahead of the game. Hugs! I hope that you get answers soon.

Curlyn · October 2017

Also, I should add that I am

Also, I should add that I am now having chemo and radiation, and it isnt as bad as I anticipated. Compliments from the support and tips that I received from the fine people on this site. Its not easy but I am well prepared.

CivilMatt · October 2017

welcome

JAL23,

Welcome to the H&N place to be, you sound too healthy and young to be here and a ½ dozen cadre of doctors can’t satisfy you with a wait and see approach. An approach which may have let the cat out of the bag or at least in your head (or something like that).

Diagnosis can be a confusing time and taking a wait and see approach can pay huge dividends knowing the trauma caused by rads & chemo. That is if the wait and see employs very good detection monitoring. Did you notice this new lump and seek medical advice immediately?

You sound vocal, so I can’t imagine your doctors were not taking you seriously. I also can’t imagine they did not perform more revealing PET/CT scans. That is where many of us lit up like a xmas tree.

Moving forward, you want a good ENT trained in H&N cancer. This may happen now that your condition has changed, but I would not get stuck on the past and start your planning for getting rid of your problems and putting this behind you. If you are claiming negligence then you are on the wrong website. We normally deal with treatment side effects and how to survive.

Wishing you good luck and sound advice.

Matt

JAL23 · October 2017

Curlyn said:
I am sorry that you are going
I am sorry that you are going through this! The only thing that I can add is that when my neck node enlarged, it was acute, painful, large and because of the intense pain thought it was infected. Biopsies did not show cancer, 3 were done plus a large incisional biopsy. We watched and waited. The cancer spread. If I had it to do over again I so wish that I had asked to just remove it. I am not trying to scare you but I find that you have to research, ask many many questions and be your own advocate. Your doctor sounds as if he is being proactive and ahead of the game. Hugs! I hope that you get answers soon.

Hi Curlyn,

Hi Curlyn,

I am sorry you are going through this as well. If you don’t mind me asking, what was the waiting period between when you first noticed the node and when it was finally taken out? How rough was the recovery from the surgery? Sorry to ask such personal questions, but I am curious about the path in front of me if it does wind up being cancerous. My ENT is really on top of things, so I don’t think he will let it go too long without operating. Thank you for sharing, and I wish you the best with your treatment.

JAL23 · October 2017

Curlyn said:
Also, I should add that I am
Also, I should add that I am now having chemo and radiation, and it isnt as bad as I anticipated. Compliments from the support and tips that I received from the fine people on this site. Its not easy but I am well prepared.

I will certainly keep this in

I will certainly keep this in mind if this winds up being the next step for me. Sometimes it feels like all the info on rads and chemo is dark stuff. Glad to hear you are powering through.

JAL23 · October 2017

CivilMatt said:
welcome
JAL23,

Welcome to the H&N place to be, you sound too healthy and young to be here and a ½ dozen cadre of doctors can’t satisfy you with a wait and see approach. An approach which may have let the cat out of the bag or at least in your head (or something like that).

Diagnosis can be a confusing time and taking a wait and see approach can pay huge dividends knowing the trauma caused by rads & chemo. That is if the wait and see employs very good detection monitoring. Did you notice this new lump and seek medical advice immediately?

You sound vocal, so I can’t imagine your doctors were not taking you seriously. I also can’t imagine they did not perform more revealing PET/CT scans. That is where many of us lit up like a xmas tree.

Moving forward, you want a good ENT trained in H&N cancer. This may happen now that your condition has changed, but I would not get stuck on the past and start your planning for getting rid of your problems and putting this behind you. If you are claiming negligence then you are on the wrong website. We normally deal with treatment side effects and how to survive.

Wishing you good luck and sound advice.

Matt

Hi Matt,

Hi Matt,

Thanks for responding. Let me start by saying I certainly didnt mean to suggest any sort of negligence on the part of my Dr.s. In rereading my post, I can see how that might have come across, so my apologies. My ENT trained at Mount Sinai and specializes H&N cancers along with thyroid cancers, and I have a lot of trust in him. I’ve been suffering from a lot of anxiety and paranoia with medical decision making after seeing 6 other Dr.s who were very dismissive about the spot on my tongue. It feels like my mental compass no longer works, and I am weary and suspicious of any direction i am told to take. I do realize that cancer is so serious, in part due to its unpredictability, so I’m going to somehow learn to adjust and live with this uneasy feeling.

My Dr.s did not want to do a full PET CT scan given the circumstances of the pathology. Regular CT scans of the neck and mouth were and still are the plan moving forward - assuming nothing is in the swollen nodes. My ENT still seems to think (based on the CT scan and somewhat on the first biopsy) that the nodes are reactive rather than cancerous. He keeps reassuring me that regardless of what happens, this is still very much treatable.

You mention this is a place for treatment and surviving. So how do you survive? How do you deal with the ups and downs and fears with diagnosing and treatment? Does it ever start to feel normal again? How do I “live my life” so to speak, with this looming heavy? I am sorry if these questions sound a little insensitive, as I realize many others (just even browsing this board) have gone through hell and back like I can’t even imagine. Maybe I am destined for that at some point as well. In the meantime, I am having a hard time coping with everything, which I think is part of the survival equation.

HelenBack · October 2017

the worst part

Hi JAL23,

It is awful to hear about someone so young going through this. Two weeks will seem like an eternity but it truly isn't long in terms of (potential) cancer growth. Most people here waited many months to find out if a lymph node was cancerous. I really hope it's not cancer but also want to reassure you that getting the neck dissection wasn't so bad for my husband (getting tonsils removed was much worse) and even radiation with a couple of chemos was quite tolerable for the first few weeks, and he recovered really quickly. He's totally fine now, 5 years later.

I guess I don't have much to add to what others have said but I wanted to chime in about how we coped. Diagnosis and figuring out what to do was the worst part. We cried and worried and researched and second-guessed. AWFUL STUFF. We used Ativan sometimes to sleep through the night. Once treatment started, it got easier because we had a plan and everyday we had an important job to do. I took my job as caretaker very seriously and learned (on this site) what was going to be helpful to my husband. For most people, the effects of radiation treatment don't get too bad for a few weeks but then it does get rough, and CSN is where to find support and great advice. The best support we found was from people who had been through some cancer diagnosis. Well-meaning but clueless people can say unintenionally insensitive things. I had a friend say, "oh, well at least they cauight it early" when it was quite late stage. Mostly, people want to sound positive but instead they can seem dismissive. It sucks.

After treatment finished things got tough again, in a different way;not having the job of fighting left us a little aimless, wondering if it worked, if it will come back, etc. It's dark and scary stuff, but like all traumatic experiences, time heals. I wish it wasn't so hard, but really, several years out, we are not afraid of anything. It sounds odd, but in general, having been through this has made us less afraid of lots of things. If it comes back, we know what that looks like and we'll deal with it. We're tough now.

I hope I didn't get too "out there" but it's serious stuff. Facing the worst and coming back is a real jouney.

I hope the docs are right and it's just a reactive node, but if not, you will get through it. Lots of us have. Consult the experts, gain some weight, reach out for support and keep us posted.

Hugs,

Helen

swopoe · October 2017

Hi! Sorry you have joined us,

Hi! Sorry you have joined us, but here you are. I want to tell you a bit about my husband's experience. He was 41 at diagnosis, but sounds a lot like you, HPV-, non smoker, the rare beer, no risk factors. No one thought the thing on his tongue was cancer. But eventually, he went to an oral surgeon who biopsied it, and it was cancer. The ENT then examined my husband. He had one large inflammed, painful node on the right side of his neck. The ENT thought for sure it would be cancerous. But after surgery (my husband had a partial glossectomy...lost about the same amount of tongue as you and a neck dissection because of that node), they found out that the node was not cancerous. Just reactive. The docs were shocked! But it was great news. My husband was at stage 1 tongue cancer. And there were clean margins in the surgery. The tumor was also poorly differentiated like yours.

Now, because his tumor showed some possible neural invasion, we could have done nothing more and just followed up with scans or we could have done radiation or radiation and chemo. But, we have 3 kids, and we hit it hard and did chemo and rads. I do want to tell you that if you end up having to go that route (and you may not...the node really may be reactive!), my husband worked during his treatment. He took one day off a work a week for chemo day. He went to his office 4 days a week. 2 years later after diagnosis, he is in the clear still. There is life after this. There are days we don't think about cancer. We think about living! And cancer isn't as much a part of that as it was.

Wishing you and your wife all the best. We are all here for you!

Curlyn · October 2017

Hi Jal, all of our paths are

Hi Jal, all of our paths are different and this is a sneaky disease where docs are forced to make decisions- sometimes leaving morbidity when unnecessary. Hindsight is a wonderful thing. Each cancer grows differently and at different rates, so you can't compare to someone else. Talk to your physician, tell him your fears. Im getting through my treatments, my husband even took me shopping yesterday!

JAL23 · October 2017

Curlyn said:
Hi Jal, all of our paths are
Hi Jal, all of our paths are different and this is a sneaky disease where docs are forced to make decisions- sometimes leaving morbidity when unnecessary. Hindsight is a wonderful thing. Each cancer grows differently and at different rates, so you can't compare to someone else. Talk to your physician, tell him your fears. Im getting through my treatments, my husband even took me shopping yesterday!

Agreed. I will do just that.

Agreed. I will do just that. Thank you for sharing Curlyn.

JAL23 · October 2017

swopoe said:
Hi! Sorry you have joined us,
Hi! Sorry you have joined us, but here you are. I want to tell you a bit about my husband's experience. He was 41 at diagnosis, but sounds a lot like you, HPV-, non smoker, the rare beer, no risk factors. No one thought the thing on his tongue was cancer. But eventually, he went to an oral surgeon who biopsied it, and it was cancer. The ENT then examined my husband. He had one large inflammed, painful node on the right side of his neck. The ENT thought for sure it would be cancerous. But after surgery (my husband had a partial glossectomy...lost about the same amount of tongue as you and a neck dissection because of that node), they found out that the node was not cancerous. Just reactive. The docs were shocked! But it was great news. My husband was at stage 1 tongue cancer. And there were clean margins in the surgery. The tumor was also poorly differentiated like yours.

Now, because his tumor showed some possible neural invasion, we could have done nothing more and just followed up with scans or we could have done radiation or radiation and chemo. But, we have 3 kids, and we hit it hard and did chemo and rads. I do want to tell you that if you end up having to go that route (and you may not...the node really may be reactive!), my husband worked during his treatment. He took one day off a work a week for chemo day. He went to his office 4 days a week. 2 years later after diagnosis, he is in the clear still. There is life after this. There are days we don't think about cancer. We think about living! And cancer isn't as much a part of that as it was.

Wishing you and your wife all the best. We are all here for you!

Hi Swopoe,

Hi Swopoe,

I understand that cancer treatment is different for everyone, but this made me so happy to hear. It is such a shame that this happened at what feels like the beginning of our transition into a family. My wife and I still have hopes of having kids one day. I feel like a bit of a failure as a husband in this regard. I do not know about the neural invasion of my tumor (I am sure my Dr.s already are well aware) but that is something to bring up if and when the lymph node stuff wraps up. I hope I can get to the place you and your husband are at now.

It is uncanny how similar my situation is to your husband's - from the lack of risk factors to the poorly differentiated quality of the cancer cells. My oncologist seems to think this was purely bad roll of the genetic dice, but it really does make you wonder about the cause and effect of all of this. Not that this line of thought matters anymore, as the focus is now on overcoming.

Thank you for sharing,

John

JAL23 · October 2017

HelenBack said:
the worst part
Hi JAL23,

It is awful to hear about someone so young going through this. Two weeks will seem like an eternity but it truly isn't long in terms of (potential) cancer growth. Most people here waited many months to find out if a lymph node was cancerous. I really hope it's not cancer but also want to reassure you that getting the neck dissection wasn't so bad for my husband (getting tonsils removed was much worse) and even radiation with a couple of chemos was quite tolerable for the first few weeks, and he recovered really quickly. He's totally fine now, 5 years later.

I guess I don't have much to add to what others have said but I wanted to chime in about how we coped. Diagnosis and figuring out what to do was the worst part. We cried and worried and researched and second-guessed. AWFUL STUFF. We used Ativan sometimes to sleep through the night. Once treatment started, it got easier because we had a plan and everyday we had an important job to do. I took my job as caretaker very seriously and learned (on this site) what was going to be helpful to my husband. For most people, the effects of radiation treatment don't get too bad for a few weeks but then it does get rough, and CSN is where to find support and great advice. The best support we found was from people who had been through some cancer diagnosis. Well-meaning but clueless people can say unintenionally insensitive things. I had a friend say, "oh, well at least they cauight it early" when it was quite late stage. Mostly, people want to sound positive but instead they can seem dismissive. It sucks.

After treatment finished things got tough again, in a different way;not having the job of fighting left us a little aimless, wondering if it worked, if it will come back, etc. It's dark and scary stuff, but like all traumatic experiences, time heals. I wish it wasn't so hard, but really, several years out, we are not afraid of anything. It sounds odd, but in general, having been through this has made us less afraid of lots of things. If it comes back, we know what that looks like and we'll deal with it. We're tough now.

I hope I didn't get too "out there" but it's serious stuff. Facing the worst and coming back is a real jouney.

I hope the docs are right and it's just a reactive node, but if not, you will get through it. Lots of us have. Consult the experts, gain some weight, reach out for support and keep us posted.

Hugs,

Helen

Hi Helen,

Hi Helen,

Thank you for responding. If I am being completely honest, the thought of a full neck dissection scares the heck out of me. My ENT said that if this winds up being positive for cancer that they'd have to do a full neck dissection. I really, really wish I could go back in time and tell myself not to Google "radical neck dissection". I think I've psyched myself out a bit. I had my tonsils removed when I was about 15, and I remember that being painful but tolerable. Not that that is related to your husband's circumstances at all. It is wonderful to hear that there is life after all of this, and I hope I can be where your husband is now as soon as possible.

My wife has been the most wonderful person in the world in dealing with all of this. I sometimes "unload" all of my thoughts, emotions, and feelings about everything (most of the time unintentionally) and she handles it extremely well. When I ask her how she does it without falling apart, she always quips "light as a feather". She is my motivation to get through this, as I am not sure I would have much of a reason to push through without her. Still, I worry about how much of the stress and anxiety about this situation is hidden behind her bravery. I haven't told her I've posted here yet, as she might misunderstand CSN as another trip down the worthless Dr. Google rabbit hole.

It's really wonderful to read about your husband's story. I know cancer treatment can take different paths, but there is something inspiring about hearing someone survive. I hope I don't have to go down the rads/chemo path, but if rads and chemo are implicated in the future, I will certainly be reaching out for advice. You mentioned that aimless worrying feeling - we felt that a bit for the last few months as well. The last month and a half especially (having started my new job as a professor, fixing my diet, and going to the gym more regularly) really made me feel... it almost felt like things were back to normal. It felt great! My Dr.s kept repeating that it would be rare considering all of the information about the tumor for it to have metastasized to the nodes. Yet, one swollen node and it feels like we are back at square one feeling nervous and anxious and aimless. I want to be tough, but the burden is too great right now with all of the uncertainty. I hope we can get there one day too.

Thank you for sharing, and I will certainly keep everyone posted regardless of the outcome.

John

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