Also new to this... what comes next

Mrs.Mack

So, ive been reading many of your stories and I would like to start off by saying thank you. Thank you for being here and sharing, seeing that so many are doing okay give me some relief to this unknown situation.

Heres my story, its similar to some of yours....

My dad, age 47, has been a long time sufferer of GERD, takes Nexium drinks baking soda you name it. No one has every mentioned him having a scope or anything other than GERD. It was diagnosed gosh, 10-15 years ago on symptoms alone. Recently, almost two months ago he started having episodes of food getting stuck. he would cough and jump up and down, I worried about aspiration at the time, we encouraged a dr. appointment but didnt push. ( turns out this has been going on a while and he would hide out in the bathroom etc so we didnt notice)

 Finally, one night the episode never passed. He was taken to the ER, had  CT done- tons of food backed up, emergency surgery to push it through, and biopsies. Biopsies came back okay, and we were reffered to Kansas University Medical Center to have the esophagus stretched. We're thinking its not so bad, we know some guys that have to have theirs stretch every now and again. No real big deal. So we went in and it was stretched and with in 24 hours was back to its previous narrowed state (more biopsies taken here nothing bad to report) Now we get referred to have Esophageal ultrasound. On the first attemp it couldnt be performed as the esophagus was too narrowed, so they restretched it and we were informed brisky that it has to be cancerous in nature. ultrasond rescheduled. The second attempt comes and is able to be completed. We were told that there was a mass,  more biopsies taken and it is most probable cancerous, we are being refered to an oncologist to be seen ASAP ( this is this last friday at 445pm and no appointments can be made this late) I ask the Dr. If this is someting that has a high success rate for treatment and he says of course and goes back to talking to my father whos still mostly sedated and tells us we need to start Radiation and Chemo immediately then he walks off. All weekend we kind of didnt pay much attention to it, but I started researching online and thats how I found this site, a godsend to keep my sanity this weekend because its ALL ive thought about since friday. So I had my game plan written out. 1.find out about Fridays biopsies 2.find best ESOPHAGEAL cancer doctors in Kansas or surrounding states whats their success rates, whats their experience. 3. Find out the stage and whats treatment plan. 4. ask about several sugeries Ive read about,  HER2, a PET scan 5. discuss G/Jube vs Stent ( my dad in 2 months has gone from 280-ish to 207, and im/were pumping all the boost, ensure plus, protein powder whole/vit d milk, icecream etc down him that we can)  I think I have a plan I just dont know if its correct or what comes next. I want a second opinion too but if it is really bad should he start treatment first? How to find out what doctors are the best. Is KU Great for this? should I look into CTCA? I want to do everything that I can for my dads survival and success but I dont really know where to start or how to go about it. After reading these post im half temped to move him up to M of U because Ive read about how good they are. IDK. Im just... I dont want to lose my dad. Hes a great guy, the best dad and im scared that this is something that was over looked for so long we cant fix it now. I tell my parents its going to be ok and about all the great stories Ive read and what others have overcome, I try to be positive and prepared. but at 3am I feel so unable to do anything to help.

Im sorry to rant Im just looking to any and all information about what to do and what comes next after youve been told- its cancer.

Any and all information is appreciated.

paul61

NCCN Centers are good locations for a second opinion

It sounds like your Dad is finally getting all the right tests to accurately diagnose and stage his cancer. The fact that it was so hard to diagnose initially gives hope that it is early stage and localized. It will take some time to complete his staging and to start a treatment plan but it is important to get it right the first time.

In terms of getting a second opinion it appears the nearest NCCM certified cancer centers to you are in St. Louis, MO, Omaha, Nebraska, and Aurora, CO. Here is a web reference to the NCCN member site. http://www.nccn.org/members/network.asp

Hoping the staging shows early stage and localized.

Best Regards,

Paul Adams

McCormick, South Carolina
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Three Year Survivor

 

Mrs.Mack

paul61 said:

NCCN Centers are good locations for a second opinion

It sounds like your Dad is finally getting all the right tests to accurately diagnose and stage his cancer. The fact that it was so hard to diagnose initially gives hope that it is early stage and localized. It will take some time to complete his staging and to start a treatment plan but it is important to get it right the first time.

In terms of getting a second opinion it appears the nearest NCCM certified cancer centers to you are in St. Louis, MO, Omaha, Nebraska, and Aurora, CO. Here is a web reference to the NCCN member site. http://www.nccn.org/members/network.asp

Hoping the staging shows early stage and localized.

Best Regards,

Paul Adams

McCormick, South Carolina
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Three Year Survivor

 

Thank you.

 Paul,  we are only 2hrs from Omaha, 4 hours from St. Louis, and 8ish from colorado, so thats great and reassuring. Thank you so much for this resource!  I will look into this this morning and hopefully get this ball rolling as well.

 

Mackenzie Herken

Leavenworth, Kansas