Anyone else mad as hell about what the docs didn’t tell us??

SusanUES

Thanks a million for all your sage comments and advice!

I've learned so much from reading everyone's experiences...the good, the bad and the ugly.  Like I said in a previous post, my cancer was advanced so it was two quick weeks from biopsy result to surgery.  In a way, although I remain angry? disgruntled? pissed off? about the lack of candor and the dimissive way my questions were handled by my surgeon, I do not question the competence of MSK and my outcome.  A couple of shout-outs:

Mrs.BD, I loved your "cancer babes, neophytes" comment...great, never thought of it in that way but true, so very true!

Hondo, ain't if grand to fire your medical professional?!?  Words can't descibe the joy I felt when I walked out of my surgeon's office doing a (silent) Donald Trump "You're Fired!"

WMC, thanks for casting a positive and affirmative light on this subject.

And I wish all of us continued healing and happy days ahead.   

AndrewP16nose

I'm a doctor and got told next to nothing!!

This might sound all back to front but because I'm a family physician,  my surgeon, oncologist and radio-oncologist told me hardly anything. I guess they assumed I knew what was going on and what to expect but I'd never had a Stage 4 cancer before and needing my 5 front teeth, upper jaw, hard palate in internal nose removed is a "patient experience". So where did I get my questions answered? Right here on the CSN- I found you guys by chance during my miserable radio and chemotherapy and although I'm in New Zealand and miles from most of you I got all my questions answered by people going through what I was trying to deal with in the dark. I can't tell you all how much being able to blog with other survivors kept me going. Thank you all.

Andrew

SusanUES

Wow, Andrew...

Amazing that doc-to-doc info was not forthcoming!  You really went through the mill...good on you for coming through as well as you did.  You live in a beautiful country...I've visited and just loved it!

TracyLynn72

yep!

The first rad onc that I saw was quite old (retired during my treatment), set in his ways and had ZERO sympathy.  I had a tough time with rads.  My body had almost an allergic reaction to the treatment.  He basically told me to "get tough" and "drink musinex if the spit bothered me".  He told me this as I was on my 5th straight day of vomiting and had to have IV fluids twice.  His younger ro partner stepped in and took over my treatment.  I had been told that rads on the head and neck area are "uncomfortable" and that I "may have a couple of sores in my mouth"  but that nothing would happen until the last couple of weeks.  Really?  I swelled SO badly after my FIRST rad treatment that they rushed me into a CT scan.  I found this site and immediately learned what I needed to!  

tommyodavey

Josephwc said:

My informative surgeon in India

Dear Susan, I shopped around quite a bit before I decided on the surgeon who performed my dissection and free flap reconstruction. If anything she has offered too much information. I live and work in India so my emotional stress has been increased just because I feel so far away from my family and closest friends. My surgeon has become a close friend and I trust her so much. 

 

The only thing that I was not told initially was to have all the metal taken out of my mouth prior to rad treatments. I watched a YouTube video and luckily asked I'm time to have two caps amd five fillings replaced just two days before treatment started.  I have two weeks to go. Wish me luck!

Filings and Caps

Josephwc,

 

No one told me to have my metal removed prior to rads.  My surgeon sent me to an Oral Surgeon and he didn't say anything about having my old silver filings removed and or my two gold crowns.  What did they say was the issue?  This is the first I've heard of that.

 

Tom

lnyert

Hi Susan, I always joked that

Hi Susan, I always joked that I was going to write a book about my throat cancer, and title it.".What Do You Mean My Thumb Fell Off"? I thought it was funny. Thats probably the only side effect I havent had. I am 24 months out and doing pretty good. I am used to the constant ringing in my ears, the debris in my air way, and a great yearning for the "old" me.

Bart T

YOUR QUESTION REALLY HIT THE MARK!

As a prequel to my answer, I am about 4 years out from my treatment for tongue cancer (surgery for hemigolssectomy, neck dissection, radiation, and a bit of chemo for good luck), and I'm deeply grateful for some very fine care. Despite what follows, I’m  happy to be around to gripe about it.  Now that the disclaimer is out of the way, yes, I'm mad as hell. 

In particular, just about all of my problems are the result of radiation. My radiation oncologist glossed over the side effects as if they were inconsequential, was very dismissive of my complaints, and just kept telling me in time I will heal. Well after four years, I figure whatever I have is here to stay, and if anything, some of things are getting worse.

 Some of the things I was "half-told" about. For example I remember being told that I would likely have dry mouth. I thought dry mouth was just some minor annoyance like the sensation you might get when you're a bit thirsty. Surprise, Surprise, Surprise, it's a whole lot worse than that. 24/7 my mouth feels like a bad hangover and at night I wake up several times a night because the pain from the dryness wakes me up forcing me to sip some liquid before I can fall back asleep. I can't recall the last time I got more than two consecutive hours of sleep.

I was told me some foods might taste different. What I wasn't told was that there would be way too many foods I will never be able to eat again, or if I eat them, I'll never enjoy them again. Fresh pineapple along with any tart or acidic fruits are on my no eat list. A margarita by the pool in the summer is totally out of the question as is just about anything alcoholic with the partial exception of some mild wines. 

Crunchy things such as a granola bar or corn chips, have the same texture as broken glass. 

Dental work on the lower rear portion of my mouth involves going to an expensive specialist dentist who needs to give me general anesthesia because the surgery disrupted the path of the normal Novocain injection rendering it ineffective.

I could go on about my issues, and even though I doubt I would have done anything different if I knew what my new normal would be, I still feel I should have been told. Yes, I could have asked more questions and done more homework, but the bottom line is the doctors should have taken more time to detail the consequences. For that, under the surface of my eternal gratitude for my doctors, there will remain a healthy dose of resentment, bitterness, and a feeling that they had no regard for the consequences of the treatment they rendered.  

LiseA

BartT, I totally get where

BartT, I totally get where you're coming from. Today is my 4th rad, and I met for weekly visit with radiologist. when I asked about potential hearing loss, he glossed over saying "you will hear from the other ear." Then he said that radiation is easy compared to the alternative. I get that but I find he's not very forthcoming at all. 

SusanUES

Poor Bart...

I totally get it, too.  We are big ole lab rats, folks...sure, the docs are out to save lives but the bottom line is that our after effects are of little interest.  And what TotalDuck said above is so true.  Not a lot of money to be made in pre or post-counseling but mucho to be made from surgery, radiation, chemo and meds.  I will repeat again...yes, I am grateful but that does not preclude me from being pissed off at the lack of "real" info we received.