Full Disclosure Survey

My docs didn't leave out a single detail that I can recall, and some of the effects they said were possible never happened.

And nearly 2 years later I'm still dealing with chronic neck discomfort, some lymphedema, etc.

Ecarr,

Let’s see what I can remember, My ENT had first crack at me and would not say that I had cancer after the fine needle biopsy , but waited until I had surgery to get a GOOD BIOPSY before he told me “you have squamous cell carcinoma”. During this biopsy surgery he went ahead and removed all the cancer in my neck and the base of my tongue (that is what I told him I wanted to do, GET RID OF THE CANCER).

On my first visit to my radiation oncologist office, they gave my wife and I a bunch of pamphlets about head and neck cancer and treatments and we watched a movie about what was ahead of us (what was ahead of me in particular).  Shortly after this visit, maybe a day or so my wife found this strange and wonderful site with all these crazy weird people who had or did have head and neck cancer and all the secretes of our cancer were at our finger tips.

I am trying to put some real time soft-pedaled, evasive info together to get an idea of your life in the fast lane of cancer diagnosis.

A few of my soft-pedaled and evasive info statements might read something like this:

“Instead of purchasing an Olive Garden Gift Card maybe, you might like to get a BOOST or ENSURE Gift card”.

“A PEG tube is no big deal and you only use it if you need it”.

“The mask is just an easy way for us to keep your head still during  your rad session”.

I am sorry if you did not  get the kind of welcome to this awful disease you would have liked. But, do not dwell on what should have or could have been said and instead I welcome you to this H&N club we all belong too.  It is terrible what happens to us, but the H&N forum can help you cope with what lies ahead for you and we have been known for straight forward answers to any and all questions.

Now tell me what is Ecarr? Is it an actual name, an electric car or something else?  Be honest and please don’t soft-pedal or be evasive with your answer.

Matt

@101 reads

armana said:

I was informed

My oncologist told me about the side effects of radiation and what to expect. I am fortunate that I had my wife with me during all the visists, because as a scared patient, I would not have comletely comprehended his comments. Keep in mind that everybody responds diffently to treatment and the Drs are not fortune tellers and some may not want to present you with the worst case scenario.

 

...I do think the doctors should say, "Worst case scenario, this could happen."

In my own case - once the biopsy confirmed it was cancer, my thought was: I want it out. Surgery. Has to be surgery, don't want to take the chance with chemo and then raditation that MIGHT get it all, when - with clear margins - we can be rerlatively confident that surgery WILL get it all.

My surgeon didn't really dissuade me from that notion. He explained that, well, other people do opt for chemo, and here's why, etc.... but I was so intent, "I want this thing out of me," that we never really got around to discussing, "Ok, but here are the long-term side effects that could result from surgery" - not just to remove the BOT cancer, but the neck dissection which took 63 lymph nodes from ear to ear.

Would I have made a different decision? Hard to say; I'd heard a lot of bad things about chemo. And, as noted, I just wanted the damned thing out of me. But the side effects of the surgery... I can't sing like I used to. I'm in constant ddiscomfort re: my neck, the dissection. Would I be dealing with this had I opted for the chemo/radiation rather than the surgery/radiation? Who knows. I know what I wanted at the time and it's resulted in what I have, right now. I'm here, which is the most important thing.

But you can't help but think - these side effects do affect my quality of life. Would it have been better if I'd made a different decision? Did my surgeon do enough to make me aware that - in my frightened state at the time - there were other options that might have been better? I don't know. We all live with the consequences  of our deicions, I guess. I am. And - hey, at least I'm living, right?

My radiation oncologist described side effects very well, and made me feel like I had it easy - as it wasn't as bad as she made it sound.

My chemo oncologist wasn't quite as good describing side effects. At one point, unexpected reactions concerned my GF, as she thought it might be allergic reaction! (An experienced nurse told me later it was just a typical side effect of 5 FU.)

My advice: Ask LOTS of questions...

Overall, I feel like I had excellent care - and the bottom line is that my first PET Scan was a NED (No Evidence of Disease)!!

kgasmart said:

This is true but...

...I do think the doctors should say, "Worst case scenario, this could happen."

 

In my own case - once the biopsy confirmed it was cancer, my thought was: I want it out. Surgery. Has to be surgery, don't want to take the chance with chemo and then raditation that MIGHT get it all, when - with clear margins - we can be rerlatively confident that surgery WILL get it all.

 

My surgeon didn't really dissuade me from that notion. He explained that, well, other people do opt for chemo, and here's why, etc.... but I was so intent, "I want this thing out of me," that we never really got around to discussing, "Ok, but here are the long-term side effects that could result from surgery" - not just to remove the BOT cancer, but the neck dissection which took 63 lymph nodes from ear to ear.

 

Would I have made a different decision? Hard to say; I'd heard a lot of bad things about chemo. And, as noted, I just wanted the damned thing out of me. But the side effects of the surgery... I can't sing like I used to. I'm in constant ddiscomfort re: my neck, the dissection. Would I be dealing with this had I opted for the chemo/radiation rather than the surgery/radiation? Who knows. I know what I wanted at the time and it's resulted in what I have, right now. I'm here, which is the most important thing.

 

But you can't help but think - these side effects do affect my quality of life. Would it have been better if I'd made a different decision? Did my surgeon do enough to make me aware that - in my frightened state at the time - there were other options that might have been better? I don't know. We all live with the consequences  of our deicions, I guess. I am. And - hey, at least I'm living, right?

I wish I would have been informed of everything to expect, good & bad & options & what I WANTED, not them. Should have been My decision.  Surgery has it own problems but I will tell you if I would have known about surgery for mine I would have done what you did.  And it was your choice.  Rads & Chemo are brutal & come with often horrific side effects.  Yes it's not all rosy out in H&N Forum.  Some do great either way some go extremely opposite.  Depends on Centers you go too, your Drs, & drugs & equipment & targeting. Any Surgery comes with risks, nerve & muscle damage, scar damage, infections.  Again, Center, Drs/surgeons, experience, location, stage & location of Cancer come into play.  I was just given one option their way, Chemo/Rads and they were harsh.  I'm alive but not living.  Yes We tend to second guess ourselves.  After 3 yrs with it, feeling fine, living a great life, I would not have done anything for at least 6 months to digest and learn as much info before I made a decision plus do a lot with my family, travel, enjoy life & eating, gain enough not to lose so much, 50 lbs in 2 months,  I also had to endure feeding tube, non stop pain with No relief and told to buck it up by a Rad Dr.  I was not terminal but feel like I wish I was now.  Not an easy decision for anyone.  This is one beast of a Cancer!  Good luck to you in the future.

I went thru treatment at Kaiser-Perm in Lonetree, Colorado.  I met my Oncs two weeks before we started (35 rad/7 chemo) and was briefed on everything possible.  I was also provided with a thick briefing book, and attended one multi-media briefing on cancer in general, and another on my specific treatment method.  We also did a dry run on the machine with my facemask bolted down days before treatment started.  I can only say good things about my team, in the strongest possible terms.  Dr Ryan Brown ENT, Dr Mark Edson Rad Onc, Dr Scott Kono Chemo and Hemo Onc.  The support staff is incredible. 

I originally went in with a diagnosis of a possible abscess to the Urgent Care office.  My ER doc ordered a scan, looked at the results, called another office and booked me for my biopsy.  Then he came out and told us we were due at the Franklin office in 90 minutes.  Dr Tran saw me immediately, did a quick biopsy, and told us it was cancer, but she would need the results to establish which type.  Three weeks later I was in treatment.  In two days I have my three year follow up.  I rotate between my Oncs for quarterly exams.

Yes, there were gaps.  Things went south for a while and I did 11 days in the ER/ICU/not home.  But, we knew something was going on, we just couldn't figure out what, my Blood Ox started reading low, while everything else looked normal .  I had formed 3 Pulmonary Embolisms.  I pulled thru, because when the effect finally hit hard I had been well trained in how to react.  My training probably allowed me to save my own life (per Scott Kono).  He would know, he trained me.