Dad newly diagnosed- lengthy response to William's questions

Hi All:
I decided to start a new post. This will hopefully be enough information for some feedback. I will start with William’s questions to me, since I think that will provide all the answers. I’m apologizing in advance for such a lengthy post!

1. Dad is 58, will be 59 in June

2. I am the oldest. I have one sister who lives in Detroit.

3. CSU Channel Islands, graduated with a BS in Environmental Science and Resource Management, minor in Biology, in 2009.

4. Dad lives in Port Hueneme, CA (Ventura County), between Los Angeles and Santa Barbara.

5. What medical facility diagnosed him as Stage IV? Hematology/Oncology Specialists in Oxnard, CA

6. This is a long answer, so bear with me. I finally got the results faxed to me about 2 hours ago. Here goes:

PET Scan- not run. I talked to the oncologist and he said the CT scan was sufficient because it was CT with contrast down to 5 mm (whatever that means)

CT scan showed ascites present with uncertain etiology and moderate retroperitoneal adenopathy identified both in the paraaortic and paracaval region with the few scattered mesenteric lymph node seen as well.

EUS showed medium size ulcerating mass with bleeding in the gastroesophageal junction. No endoscopic evidence of mass or ulceration in the entire examined stomach.

Biopsy tissue results confirmed by pathologist state moderately to poorly differentiated adenocarcinoma, invasive

7. Dad was not referred to a surgeon. Oncologist diagnosed it as Stage IV, inoperable. I asked about a or b, and the TNM nomenclature, and was told that is all pathological nomenclature and since surgery hasn’t been performed, he can’t give a pathological diagnosis. He said 1 tumor (gastroesophageal junction) and 2-3 nodes, retroperitoneal and mesenteric.

8. The oncologist told my dad he was terminal.

9. I don’t know for sure how long he was exhibiting symptoms because my dad hides things and doesn’t like to complain. My mom noticed he was starting to lose weight early February, and then started watching his eating patterns. He was eating less and less. Around the beginning of the month he was unable to tolerate any solid food, which is when he finally went to see his primary care physician and the tests began. The oncologist didn’t NOT recommend chemo/radiation, however has indicated in his report that it would be palliative. He has recommended a regime using 5FU cisplatin via IV and Xeloda by mouth, in addition to radiation of the GE mass.

12. The doctor’s name is Warren Banta and he is a board certified oncologist and hematologist, with his background in internal medicine. He has only been practicing for 5 years, completing his residency in 2006 at Los Angeles County Hospital. His medical degree is from St. George’s University in Grenada. No, I’m not impressed.

13. Effected lymph nodes are retroperitoneal and mesenteric.

15. Dad has not had a second opinion and does not want one at this point. He feels that the doctor has the training and knows what he’s talking about. My question: if he moves forward with the treatment, can he get a second opinion at any point? It seems that treatment is standard no matter what stage he’s in.

16. He is a 2-3 pack a day smoker and an alcoholic, but otherwise healthy. He does have complications with a hiatal hernia, which is part of the reason he didn’t get checked out earlier. He thought it was just the hernia acting up.

17. No other organs are effected, however the oncologist said “because it has spread outside the esophagus, surgery is not an option”. THIS is something I don’t understand.

18. Dad is pretty bitter right now, I guess. He just wants to accept what he has been told, use the treatment options that are made available unless “ he doesn’t like feeling so sick”, and doesn’t want people coming out of the woodwork to express their condolences, which I understand. I don’t know why people don’t want to check in on the healthy, only the sick and dying.

19. Mom is 61 in October, and a nurse. She is a mixed personality; submissive in my dad’s presence and spit and vinegar outside of it. She’s having a hard time balancing her health care profession with her spouse roles.

20. Dad has Anthem Blue Cross. I don’t know what constitutes “good” insurance, so I can’t answer this.

21. He is able to travel, I just don’t think he wants to. He is adamant about accepting it. “It is what it is”, he says. So he’s pretty defiant about seeking a second opinion.

22. I found this site relatively quickly. I was reading through some research papers in medical journals, but they were giving me a headache. I decided to look for normal people. :-) A Google search showed one of the discussion topics, I clicked on it, and it led me to this site.

Hopefully this has been enough to get a discussion going on what to expect with my dad. I’m still struggling to believe its really stage IV with only 2-3 nodes and one tumor in one organ.

I’m going to fly out there on May 4th to stay with him for the weekend. My kids aren’t happy I’m leaving them for Mother’s Day, but they understand. I’m not sure how best to spend the visit. As much as I want to try to convince him to get a 2nd opinion, I want to spend a lot of quality time with him and not create tension. I don’t even know how best to approach the idea of a 2nd opinion. My mom has tried and he has silenced her by saying absolutely not. He’s worried that seeking a 2nd opinion is reaching out for false hope and he doesn’t want to be told twice that he has a noose around his neck. Any suggestions?