Where is the Answer???

SuzJ

I'm with OKCNative..

You seem very negative, and.. angry?

 

My tumor board discussed my cancer, I could have seen any of the Drs at my hospital, and they all knew the discussions. The Tumor board meets once a week, Monday mornings.

I saw Radiation, Medical, Surgery, Dental, Nutrition, Physical and Speech therapy, and many others I just don't remember.

 

I've had PET scans, MRI's, CT scans, Ultrasounds, ...

 

So my question is, whats with all the negativity?

CSN_Simone

Hello All,

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CSN Support Team

Ron Silver

I sure we can all dogpile. 

I sure we can all dogpile.  Of course you had a 'tumor board" a plethora of scans after treatment, your insurance would pay for 2nd and 3rd opinions, a full "team" including a massage therapist and you get a chocolate on your pillow each morning. Does not everyone????

Now I really feel deprived!  I had no "team" was only allowed one scan post treatment.  However I did get free juice with my chemo and a handout on swallowing exercises.  My post is and was a reality check.  I am gonna send this thread to my oncolgist.

MoreThan9Lives

I don't think that Ron is

I don't think that Ron is being negative at all. He's rather starkely pointing out that the quality of care in general, and cancer care in particular, that one receives in this country varies GREATLYdepending on your insurance coverage. It's a great comfort for me on a personal level to have a "Cadillac" health insurance plan by virtue of the fact that I work for the City of Baltimore. In speaking to many people I've found that a LOT of folks' insurance doesn't afford them the luxury of multiple CT/PET scans, X-RAYS, etc. Another important variable in the the quality of health care dispensed that Ron left out is geography. I am eternally grateful for the the fact that I live in Baltimore, Maryland as opposed to say, Kinston, North Carolina (my birthplace). All negative connotations associated with Baltimore not withstanding, we here are blessed to be one of the country's great centers for medical research and treatment. We have not one, but SEVERAL healthcare delivery sytems serving our populace. Just sayin...............................  

momall25ofu

I agree with MoreThan9Lives

I agree with MoreThan9Lives and Ron.  Good care is dependent on your insurance.  Individual insurance plans determine whether treatment is great or barely adequate.  

The key to dealing with mediocre insurance is to FIGHT them.   I've learned that trick.  It requires getting past their "first line of defense" (insurance "representatives" who answer -- trained with pat replies that get you no where).  You have ask for and DEMAND a supervisor, get your work company's head of insurance involved, and if needed your state representative, in order to get the care you need. 

SASH

My Timeline and Choices

Ok, I see I'm a day late and dollar short on this but here is my 2 cents worth.

June 1999 having difficulty swallowing that I wasn't even aware of, but it was pointed out by my mom.  Went and saw an ENT who diagnosed me with having a sinus infection.  10 days of antibiotics for this and follow up with the ENT in July 1999 and another round of antibiotics as it hadn't cleared up.  

August 1999 saw Primary care who said to go to an oral surgeon for a biopsy.  We think he knew what it was but wanted confirmation.  Granted this was just by looking in my mouth.

Friday Sept 10, 1999 - First available appointment with the oral surgeon - did 3 biopsy samples 2 from the top and one from the underside of my tongue.  I asked for a tongue stud since he already had the holes but he declined.

Thursday, Sept 16, 1999 got the results of the biopsy from the oral surgeon Stage IV N0 Squamous Cell Carcinoma of the tongue.  Asked about treatment locations, etc.  He had no idea.  Had a family meeting with parents and sister after we had the results and what to do.  Sister had a friend that worked at the cancer center so a call was placed, results faxed to her.  The fax was brought the the chief ENT Oncology Surgeon at the cancer center and he was told by my sister's friend, you will be seeing him.

Friday, Sept 17, 1999 - ENT Oncology surgeon's office called to have me down on Monday.  We would just have to wait as he would squeeze me in between surgeries.

Monday, Sept 20, 1999 - Slides brought for Cancer Center's pathologist to confirm diagnosis.  ENT Surgical Oncologist scoped me and then the treatment discussions started.  Surgery at the time was out of the question as it would be too devastating to me as it would have been a total glossectomy, insertion of feeding tube, and voice box removal.  He wanted to present the information at Tumor board on that Thursday.

Monday, Sept 27, 1999 - Had appointment with Oncologist and Radiation Oncologist about treatment plan.  10 weeks of radiation 5x a week and 12 weekly chemos.  

Oct 10, 1999 - Had dentist appointments to have teeth cleaned.  It took several hours due to the size of my tongue.

Oct 12, 1999 - saw oral surgeon to remove 4 wisdom and 8 molars to keep them from being damaged from radiation.

Nov 1, 1999 - started radiation and chemo to start a couple of days later

By Mid-March all chemo and radiation had completed due to blood counts there were several times that chemo had to be postponed.  

April 2000 - Surgery scheduled for May 1 after I gained some weight back - lost 95 pounds during treatment and had feeding tube installed for the surgery on May 1st.

May 1, 2000 Surgery scheduled for 18 hours to remove 85-90% of my tongue and do a flap from at first they thought my back, but in surgery they decided from my stomach instead so they wouldn't have to keep flipping me over during the procedure.

Spent 7 days in the hospital recuperating then home.  

July 2000 was able to have the tube pulled as I was getting enough nutrition by mouth.

Here we are in 2018 and I'm still here.  Not without my new normal of swallowing issues, dry mouth, speech problems, etc.  But I'm still here.  

A few years ago when I was down to my last 4 lower teeth, I went through HBO treatments and 2 jaw surgeries to have the remaining teeth removed and implant posts installed.  Now I have a permanent denture for lower teeth which allows me to eat.  While I'm able to eat, I now have issues with swallowing so I limit myself to thickened liquids and soft foods to keep myself from aspirating too much.

 

While this journey is a struggle, the alternative is worse.

 

SuzJ

Kidding, right?

I fought all the way with my insurance.

But I'm at a teaching hospital, where if you don't have insurancve, or money, you can apply for help, and get the same care as anyone else. You just have to know who to talk to. The Drs and Nurses were good with the info

Drivingdaisy

Cancer sucks & each story is different

some get great care, some of Us plead for help & get no where & that’s just Drs.  My so called team was an ENT (the kindness), Ro & Chemo .  No surgery since mouth was too small to get robotic in to take the spot, no lymph nodes involved (lucky).  My RO was so insincere,  showed very little kindness & help.  Feel he caused many of my problems with not targeting properly, No Salivary , no thyroid in first yr.  My Chemo showed compassion in the beginning than abandoned me.  visits were all of 5-10 min if lucky just cause I did well in his mind but nothing except a check up to follow protocol.  Developed a Sodium low issue yet would not give me a bag to bump them up, always told me to go to the ER.  Everything else I got help with I fought tooth & nail for & begged for, all with good insurance.  It was Drs that wouldn’t help or just said go see someone else.  no accountability.  Yes I’m angry, dealing now with stomach issues, can’t get into a GI till Jan.  So now having to work on my sodium up keep myself but can’t eat much & starving, but body rebellin.  Can’t get any help.  Team help, some of Us don’t get that offer or caring Drs.  Cancer sucks especially this one. Takes, & Takes, normal lifestyle gone, this is NOT living, it is surviving One day, at a time.  Next check up next month & demanded Pet to check if this has moved elsewhere which happened to a friend I went through treatment with.  1st yr to both lungs, rads, than rib bone, rads, now liver on going Chemo.  Mine is also HPV + so it loves soft moist places.  It can move, already had a stroke due to sodium low wish I would not have made it.  I’m exhauste.  Just want to do some living not existing & constantly fighting for help.

SuzJ

wow

I really did get lucky. My doctors are caring and nothing is "too small" to worry about.

I don't have my origonal ENT, but the new guy, survived my sarcasm, and "I didn't choose you" comments, and I trust him.

 

Just an FYI, I am near Richmond VA. My hospital is VCU Medical Center

AnotherSurvivor

As is rather common, I second

As is rather common, I second the motion by Suzj.  I went thru treatment with Kaiser Perm in Denver, mostly at Lonetree, and had the whole cast.  The only one I had problems with was a young inexperienced nutritionist who kept  suggesting that adding gravy on my mashed potatoes would help stop my 55 pound weight loss.  There was one Hospitalist during a spell in the ER/ICU who tried to push an unwise surgical action.  That got addressed within a couple of hours by a massively senior oncologist who summarized the whole thing by saying she was wrong and "I educated her".  She actually came thru big-time later with a fix for another problem, so no harm, no foul.  I love my care staff.  I have total confidence they are doing their same perfect job every day for others.

Curlyn

Hi All, my take is a bit

Hi All, my take is a bit different on all of this. I'm glad there is a shake-up in the field. It makes our healthcare professionals think hard on what is best for each individual. The fact that the decision relies heavily on patient input demonstrates ( to me anyway) that maybe there is more of an open mind these days in considering treatment. There are new drugs, new stats in the making, new results. Even the way radiation is delivered is changing. Life has no guarantees and never did. We are all masters of our own fate, and even choosing to do nothing is a decision. Ask questions, though, as many as it takes for you to arrive at the best decision for you!

PS- not sure what my intent was but I left out the most important part- that I agree that it depends where you live and what insurance you have to cover costs of treatment as to how your treatment and after care support go ie. physio, massage, swallowing therapy, etc. It also depends on one's financial ability to get to big teaching hospitals in order to receive that kind of care or maybe even participate in research studies. Many do online fundraising these days for family members. A sad reality.