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I want off this roller coaster! (new diagnosis for dad)

first_thess5_17
Posts: 2
Joined: Sep 2015

I will try not to get too wordy so someone might actually have time to read this and possibly respond (I am a writer by heart and often go into too much detail). On dad's 63rd birthday in July a large mass was discovered in his lung.  No symptoms except back pain.  Lung cancer!  OK, so off to the races, the decision is made between my parents, CTCA (cancer treatment centers of america) was their best option. So within a week and a half off they go, 300 miles away, to face this battle.  A brief background before I continue with where my questions are.  In March of 2012, my brother passed away. 9 months later, after 7 open heart surgeries and being listed for transplant, my 18 year old son passed away after developing a fungal infection after his 7th OHS to place an LVAD to await transplant.  (Hence the subject line, I want off this roller coaster).  Back to dad, oncologist says it's the second largest tumor he has seen and had spred to his adrenal gland...stage 4.  Chemo begins after numerous imaging and lab tests.  Then a dr says, wait, we haven't scanned the brain.  2 small spots found. Cyberknife removed the two spots.  OK, continue treatment.  Then pain moves to the left side, so another imaging test.  Now, we have two spots on the liver (after 1 chemo treatment that is shrinking the lung tumor) and a mass on his spine.  One fall and he's paralyzed.  Emergency surgery scheduled, golf ball sized tumor removed, cage placed, and after healing will have radiation on the spine area.  After 1st and 2nd chemo (only 2 so far) he has run a fever, all tests negative, they say it's tumor fever.  Fever has been higher this time and lasting a lot longer than the first time.  He has also had several moments of confusion.  Everyone has an opinion on that, it's the meds (med suspected has been stopped), it's the fever, it's the cancer, on and on.  I am TERRIFIED they are missing something.  They did tons of labs and cultures on my son and it wasn't until two days before the died they finally had a fungal culture that showed the infection, that ultimately killed him.  Drs are saying the tests they are doing would show fungal growth, but I know a different test has to be done for that and am not there to insist they SHOW ME they are doing the right test.  The confusion has me most concerned.  I worry it's in the spinal fluid (which was suggested by one dr and then dismissed by all the others including the surgeon).  Would cancer in the spinal fluid cause the confusion?  Can a mass be "hiding" in his brain they can't see?  He isn't confused all the time and it's varying degrees. One time it will go on for hours, rearranging the furniture looking for something and thinking people and the dog are there.  Another time he will say one thing strange and immediately realize it was strange and not know why he said it.  I am not looking for sunshine and roses, so if you have an opinion on this please share, I can take it.  I just need to know if this is normal or if it means things are getting worse.  CTCA does not give "expiration dates" and I appreciate that because I feel that only God knows that, but He has given them knowledge to know the signs of progression of this disease. My mom wants a continuous fight song and I respect her wishes, but I need to know what is realistic.  I have 4 other children I need to gently prepare as best I can.

dennycee
Posts: 836
Joined: Mar 2011

The confusion may be related to the radiation and steroids.  Its been less than two months since treatment ended.  There is no reason why you can't get a second opinion.  If they agree with the care plan CTCA made you will find more confidence in them.  

TawnyJean79's picture
TawnyJean79
Posts: 3
Joined: Oct 2015

Hello.

I share in your hesitancy to ignore the fever. My father is fighting SCLC and he had a large mass that started to arise on his chest plate... the dr. said that it was the cancer and that it was a tumor growing on the sterum --  even though two biopsies returned as benign. After protesting, the doctor agreed to put dad on anti-biotics even though he KNEW that it was a cancerous tumor. And guess what? Dad took the antibiotics and the "tumor" went away and so did the fever!! Trust your gut. 

I am heartbroken to learn of your loss... you have endured so much. I wish the very besy for you and your dad.

Tawny

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