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

Susan,

i know exactly what you mean and, with that said, am also incredibly grateful to my team of dedicated doctors who did so much for me.

No. They don't tell you much about the after-effects of treatment. I have a radiation injury to my tongue which leaves me in constant pain. No one told me this could be a possibility. I'm 21 months out and some days I can hardly stand it. when I told them I was having a problem, they just sent me over to pain management for meds. I researched hyperbaric and asked for a referral. Ive learned to be my own advocate.

i think one of the reasons why they don't dwell on the potential side effects are: a) everyone is different and the side effects may be different for each individual, and b) my personal opinion is if they told you all of this while you were trying to absorb what you were about to endure (treatment) would you decline treatment? Some people might. It's an overwhelming load of information.

if I had known I'd be dealing with the pain that I'm constantly in, I'd still choose treatment. I'm just hoping that the hyperbaric treatment that I'm doing now will help.

as for the tightness in your neck, mine has improved greatly. My dry mouth is tolerable. 

I did a lot of research before I started treatment as well. So I had a huge list of questions for the docs about possible side effects. But, again, they don't know everything and it's sometimes hard to predict how each person will be affected afterward. 

Hi Susan,

The majority of people joining our club are pretty much dazed when told they have cancer and rarely is anyone fully prepared for what is to come. There are a handful of people in the medical field who know about what happens but most are just very rattled, shaken up, scared, and totally not prepared.

Each situation is really unique. The doctor's personality, your personality, your diagnosis, various treatment options, your own body condition, etc. The list goes on and on and every one has an influcence on how YOU are best able to cope with the ordeal.

I do think doctors in generally offer less information rather than too much. Honestly, most people are already freaked out just by having to go through the ordeal one day at a time. I really do think quite a few would just totally melt down if they were given all the potential gory details. I'm certain doctors may have offered more details and patients just walked out the door.

From my time here, even though I don't remember any poll on this one, that less details is probably the preference. I sort of laugh as I can't remember anyone as crazed for details and information ahead of the ordeal than me. I asked 1000 questions - look at my post count. LOL I wanted to know as much as I could so I could ensure I was as fully informed of what was going on and the options being presented so i could feel I made the best decision. Today, there is never a day in the past three years, not one, where I thought what if, or I should have, I would have, I could have done something different.

If you feel you want more information, there is plenty of resources availalbe to you. Naturally, none of us will ever be as expert as the doctors but at least we can understand the lingo and the general options and know enough to get a solid feel good about it all. Then again, some folks really just don't want to know anything more. Literally, just take one day at a time and deal with whatever comes. Good luck, don

I understand your anger Susan.  I too have been angry regarding the lack of information and compassion given.  Often felt like a number in line to be radiated or sitting waiting for my toxic cocktail.  Have found you do have to be your advocate.  My ENT has been the only one who has helped set me up with the tests and therapy that I have needed. In the 2nd wk of treatment, pain got so bad due to horrible mouth sores my Onologists offered some pain meds but do to some possible allergies, they would not prescribed them and told me to get a Pain Specialist. No help, no referral. I did not ever get any handouts on what to expect, treatment plans, or side effects.  Just verbal basics with nothing much to fall back on when questions arose.  Was told not to read to much on the Internet yet that was the only way I could understand what was going on.  My mouth became so loaded with muscosis, sores, burns, that a PEG had to be put in.  They just kept saying," I've seen worse, you'll be ok after treatment."  These are top Cancer Doctors in our area, by the way.  

As for information/ classes pre-treatment, I agree.  Would have been extremely helpful.  My Speech/Swallow Therapist has been trying to set-up such a program but so far has only gotten I Onologist on board.  Hoping more will follow since our Hosiptal is starting the "Star" Program.

As for pre-information clouding my judge, I do not think so at all.  I like to know what is going to happen so I can be prepared for it.  I would have have made my best effort to get through treatment for myself and the others around that love me.  I am 3 wks out so I have time till I get a new diagnosis and hopefully many of these side effects will get better with time but if for any reason I get a negative diagnosis, I will educate, evaluate, and maybe even reconsider all treatments before I make a decision the second time around.  Knowledge is Power.

I was fortunate in that my team at Johns Hopkins spoke to me about what to expect and gave me literature as well. That being said, I joined this forum at the beginning of my journey and reading what everone went through prepared more than anything else and for that I'm grateful. The mantra "everyone is different" rang true as I experienced symptoms that I saw others experienced and it didn't take me by surprise. Same with the long term effects. 

That being said, it's such an individual experience and we all have different ways in which we react and cope. 

Positive thoughts and prayers

"T"

Cancer babes. Neophytes. That's what we were when we first met our oncologists. I think they treat new patients the same way good parents share bad news with young children. They give the necessary information and try not to traumatized the "babes" with all the negatives. They figure they'll answer specific questions as they occur. My doctors were excellent "parents". They went through the booklets with me, highlighting important parts, but tried not to add to my already growing anxiety. Not everyone experiences every symptom, so the team members reacted as side effects occured. I was blessed with good doctors and support staff as well as the wonderful people on this site. We can help the newcomers with our advice and prayers. Some of us have also mentored people who are starting their treatment. It helped me take the focus off anger at getting this disease and turn it into a force for good.

SusanUES said:

I'm loving all your responses!

Great reading them...I find open discussion both informative and interesting.  Yes, I understand the concept of reluctance on the part of medical professionals to offer too much info on what's to come.  But hey, what would have been our options...not much, right?  My anger mostly stems from the dismissive way I was treated post-op by my surgeon.  On my third follow-up, he upset me so much that I left his office thinking, "that's it, end of story, I am never ever ever seeing you again." My oncologist and his team were upset, of course...but I stuck to my guns and am so much happier now.  My oncologist takes plenty of time, answers my questions kindly and carefully, I just love him.  I'm a year out now so pretty used to all the baggage we have to carry around (plus did a ton of research during that time).  This forum is fantastic!  And thanks again for all your comments, guys...much appreciated.

go-to guy....from warm fuzzies to meds.  He ALWAYS talks to me until I'm done talking.  He's warm, compassionate, kind hearted, and knows more than just Oncology.  When I had my recurrence, he knew that I didn't feel comfortable with the RO....who's cold as a fish....and even tho I wasn't getting chemo, he kept me in his loop so I could get the care I wanted.  If I needed anything, medical-wise, he would be there to provide it. 

I see the ENT....I see the RO.....but when I need something, I go to my Oncologist.

p

SusanUES said:

I'm loving all your responses!

Great reading them...I find open discussion both informative and interesting.  Yes, I understand the concept of reluctance on the part of medical professionals to offer too much info on what's to come.  But hey, what would have been our options...not much, right?  My anger mostly stems from the dismissive way I was treated post-op by my surgeon.  On my third follow-up, he upset me so much that I left his office thinking, "that's it, end of story, I am never ever ever seeing you again." My oncologist and his team were upset, of course...but I stuck to my guns and am so much happier now.  My oncologist takes plenty of time, answers my questions kindly and carefully, I just love him.  I'm a year out now so pretty used to all the baggage we have to carry around (plus did a ton of research during that time).  This forum is fantastic!  And thanks again for all your comments, guys...much appreciated.

Yes, that was not very good of them keeping you in the dark about what will happen after all the treatment is done.  My case was like Phrannie's.  My team of doctors did tell me up front what might happen and the majority of information I got was from everyone here.  

That is awful knowing your surgeon had to cut a nerve during your neck dissection.  Mine wasn't cut but my doctor said he had to pull it up quite high to get to the cancer underneath.  So like you, I suffered pretty bad shoulder and arm pain for almost 2 years.  I would have sworn he cut it.  Nerves just don't like to be touched and payback is a bi@#$.

Lucky for me my teeth have stayed okay.  The oral surgeon didn't need to pull any because I already take very good care of my teeth.  The only difference now is adding the flouride to my nightly ritual of flossing, brushing, etc.  If I lose some teeth so be it.  

Don't believe them when they say it's forever.  My saliva came back and is now almost 100%, even with losing my right parotid gland.  Give it two years and think positive.

Tom

I'm annoyed that the radiologist at MDA said radiation would be easy. He does not derm

to take my questions seriously, and dismisses my concern wirh a soft "it's not bad, don't read anything on the Internet.  I'm due to begin treatment on May 31st.  I opted out of chemo in combo with radiation because of Mastocytosis. They do not have a clue about whether Cisplatin is going to cause me more problems than the average person, and the oncologist just said it would be an adventure since she's never had a patient like me. I can't say that I'm super impressed with the lack of communication between my team members. We wrote an email today to the PA to let her know about our dissatisfaction. 

Maybe I just got lucky and got the right doctor and team. I went to Stanford Medical and did my research where I wanted to go. I wanted to stay in California to make it easier for my wife. I checked all the places and Stanford was my choice and I wanted this Doctor. He is the head of oncology, head ENT surgeon, and the only doctor there I see. I do go there SLP as well. He did everything he could to get me to a local ENT to have me checked locally for every other visit to save me money and the 215 miles, one way. Which he did and that was some help as to see Stanford it is 12 hour day for me, but well worth it. When my prosthesis is leaking, [I had a full laryngectomy and the TEP lets me talk] I e-mail him and the SLP who is the one who changes them, and may ask if I could come in next week to have it changed. My doctor sends his e-mail to several and tells the I need to be seen now and somehow get me in tomorrow. The way he writes it you can tell there is no discussion on this, and just make it happen. I drove four hours the next morning and I was seen and taken care on there lunch hour, as they are booked weeks in advance. I never had to have chemo or radiation, just surgery and cut from ear to ear and 86 lymph glands removed. He even asked if I would do some videos and put them on YouTube so he can show others, to help laryngectomee do all the things I can do that we are told we can't do, but I found a way to do them, like blow your nose. You see we have to breathe through a hole in our neck so many things are much different. He has shown them to ones that just had the surgery, or about to have it and are so scared. They even have other laryngectomee come and meet the new one who have to have the surgery so they can see for them self that there still is life as a neck breather. By the way, the videos have been viewed in 62 countries now.

So you can see why I am shocked at how you all have been treated. One would just assume you would be treated the same.  I'm sorry you weren't

Bill

I did so much research about treatment side effects and that includes this board.  If I had just went by what my doctors said.....well I'd know hardly anything.  The bad thing about reading and reading is I expected things to be much worse than they were.  Thats a good and a bad thing I guess.  They did give me a fairly thick book that listed side effects which was good but it was very general.  My Radiation Onc thought I was a "very pleasant patient" which is very odd.  It was just I had read about all the side effects and I didnt see any point in asking him about them.  I also didnt feel like talking...  Oh and I also lost my voice for a month.