Dad newly diagnosed- lengthy response to William's questions

Jenyphero

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?

sandy1943

I know how difficult it is
I know how difficult it is to deal with someone like your dad. Praying you can convince him to get a second opinion.
I can't believe the oncologists would give this diagnois without a pet scan and other tests. He definately needs another opinion and fast. Cancer doesn't wait on us to make decisions.
Hope your visit with him will be productive,
Sandra

hopper52

GET THE SECOND OPINION
I, too am newly diagnosed. I, too was a heavy smoker (2 packs a day for about 40 years). I also struggled with alcohol for 40 years until I was able to quit 4 1/2 years ago by the grace of God. I'm also 58 (59 this year). Being an ex-alcoholic I can relate to your father's position. In a weird sort of way it's a vestige of control. One of the hardest things I had to do in my recovery from alcoholism was release control to God, seek His will for my life and try to do the next right thing. My life is so much better today. Even though I have this dreadful disease, I keep praying and trying to do the next right thing. There's a prayer they use in Alcoholis Anonymous that says "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference." I was in fear when I began my tests that I was stage four but the Lord comforted me and said let's get the whole picture. Then the PET and CT came back and it appears that it hasn't spread. So now I'm thinking stage III. I came back today from an endoscopic ultrasound and the Dr that performed it said that yes the tumor has penetrated the muscle she could see no lymph node involvement, so now I'm taking a positive outlook that the TNM will be T3N0M0 (Stage IIa). I'll get the results next week after I meet with the oncologists and surgeons.
That being said........I would definitely recommend a second opinion or I should say insist on one. From your description it sounds like some of your doctors may have graduated from the "LaSalle Correspondence Institute" that you used to see on matchbook covers. Try and find a top notch cancer center in your area and even if you have to travel to get to one, go for it. I know your Dad says "It is what it is" but to me that's a cop out. From what I've learned from this site is to never give up. If he gives up the outcome is assured....if he continue to fight he has a chance. If he'd like to talk to me I'd be more than happy to. I know that my disease is probably the result of the lifestyle I lived but that lifestyle is in the past, I'm forgiven by the blood of Jesus and I just take it one day at a time. God bless you and pray that God will open a door that your father will be receptive to a second opinion. I'll be praying for you.

Unknown

hopper52 said:

GET THE SECOND OPINION
I, too am newly diagnosed. I, too was a heavy smoker (2 packs a day for about 40 years). I also struggled with alcohol for 40 years until I was able to quit 4 1/2 years ago by the grace of God. I'm also 58 (59 this year). Being an ex-alcoholic I can relate to your father's position. In a weird sort of way it's a vestige of control. One of the hardest things I had to do in my recovery from alcoholism was release control to God, seek His will for my life and try to do the next right thing. My life is so much better today. Even though I have this dreadful disease, I keep praying and trying to do the next right thing. There's a prayer they use in Alcoholis Anonymous that says "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference." I was in fear when I began my tests that I was stage four but the Lord comforted me and said let's get the whole picture. Then the PET and CT came back and it appears that it hasn't spread. So now I'm thinking stage III. I came back today from an endoscopic ultrasound and the Dr that performed it said that yes the tumor has penetrated the muscle she could see no lymph node involvement, so now I'm taking a positive outlook that the TNM will be T3N0M0 (Stage IIa). I'll get the results next week after I meet with the oncologists and surgeons.
That being said........I would definitely recommend a second opinion or I should say insist on one. From your description it sounds like some of your doctors may have graduated from the "LaSalle Correspondence Institute" that you used to see on matchbook covers. Try and find a top notch cancer center in your area and even if you have to travel to get to one, go for it. I know your Dad says "It is what it is" but to me that's a cop out. From what I've learned from this site is to never give up. If he gives up the outcome is assured....if he continue to fight he has a chance. If he'd like to talk to me I'd be more than happy to. I know that my disease is probably the result of the lifestyle I lived but that lifestyle is in the past, I'm forgiven by the blood of Jesus and I just take it one day at a time. God bless you and pray that God will open a door that your father will be receptive to a second opinion. I'll be praying for you.

This comment has been removed by the Moderator

Callaloo

Dad needs a better-informed opinion
Yes, it's possible to be stage IV with only a couple lymph nodes. It's not how many, but where they're located. Even a single malignant distant lymph node will render EC inoperable. That said, I'm not sure how a stage IV can be diagnosed so soon, without a biopsy of the ascites, or at least a PET scan (but without actual biopsy, even PET scan can be inconclusive).

First, a CT scan can only suggest malignancy, it cannot confirm it. I've had 5 CT scans with contrast in the last year. Whenever a scan detected pathologically abnormal lymph nodes, it has been followed up with a biopsy (when the node is in an accessible area) to either confirm or rule out maligancy. It will be hard to biopsy the retroperitoneal nodes, but it seems like the ascites can be extracted for biopsy.

I also had retroperitoneal adenopathy show up on my initial CT, but without ascites, and both the oncologist and radiologist told me that it was just as likely due to inflammation as cancer. Because malignancy was confirmed in other distant lymph nodes, we never bothered to confirm or rule out metastesis to the retroperitoneal area.

I know about false hope -- I've been through that wringer too. But it's important to get the staging right, even if all it does is confirm stage IV.

Second, the fact that stage IV is incurable does not necessarily mean your dad has only months to live (I think that's the generally accepted meaning of "terminal"). If your dad is medically fit, and the cancer hasn't affected his other vital organs, and he's treatable with chemo-radiation, I would ask the oncologist why such a dire prognosis so early in the game. It's this doc's apparent "shoot-from-the-hip" prognosis that makes me question his opinion.

Third, don't discount the idea of chemo-radiation even if it is just "palliative" as opposed to curative. The fact that treatment is palliative doesn't mean it's a waste of time. I have undergone palliative chemo-radiation and I'm still going strong more than a year after being diagnosed with stage IV. I'm still having palliative treatment, leading a normal life, and I expect to be around for a while.

The point of getting a second opinion is not just to find a doctor who will say dad is curable. There are other reasons, even if it confirms stage IV. The point is to consult a doctor who understands this particular disease and has treated this disease, and a general oncologist is unlikely to have sufficient knowledge.

Stage IV EC is not curable, but it is treatable, with the treatment goal being "stable disease". It's a goal worth fighting for.

Jenyphero

hopper52 said:

GET THE SECOND OPINION
I, too am newly diagnosed. I, too was a heavy smoker (2 packs a day for about 40 years). I also struggled with alcohol for 40 years until I was able to quit 4 1/2 years ago by the grace of God. I'm also 58 (59 this year). Being an ex-alcoholic I can relate to your father's position. In a weird sort of way it's a vestige of control. One of the hardest things I had to do in my recovery from alcoholism was release control to God, seek His will for my life and try to do the next right thing. My life is so much better today. Even though I have this dreadful disease, I keep praying and trying to do the next right thing. There's a prayer they use in Alcoholis Anonymous that says "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference." I was in fear when I began my tests that I was stage four but the Lord comforted me and said let's get the whole picture. Then the PET and CT came back and it appears that it hasn't spread. So now I'm thinking stage III. I came back today from an endoscopic ultrasound and the Dr that performed it said that yes the tumor has penetrated the muscle she could see no lymph node involvement, so now I'm taking a positive outlook that the TNM will be T3N0M0 (Stage IIa). I'll get the results next week after I meet with the oncologists and surgeons.
That being said........I would definitely recommend a second opinion or I should say insist on one. From your description it sounds like some of your doctors may have graduated from the "LaSalle Correspondence Institute" that you used to see on matchbook covers. Try and find a top notch cancer center in your area and even if you have to travel to get to one, go for it. I know your Dad says "It is what it is" but to me that's a cop out. From what I've learned from this site is to never give up. If he gives up the outcome is assured....if he continue to fight he has a chance. If he'd like to talk to me I'd be more than happy to. I know that my disease is probably the result of the lifestyle I lived but that lifestyle is in the past, I'm forgiven by the blood of Jesus and I just take it one day at a time. God bless you and pray that God will open a door that your father will be receptive to a second opinion. I'll be praying for you.

Thank you!
Thanks for the honesty, Hopper. I think that's my dad's biggest issue right now. He feels like he let everyone down by his choices. While I'm sure alcohol and tobacco consumption play a large factor, there are many factors to this horrendous disease. I know cancer survivors who never smoke or drank a day in their life and others worse than my dad who don't have a thing wrong with them. To narrow it down to, "Oh, well that explains it" just doesn't work for me. It's almost like he's written off because of his choices, both by the doctor and by himself. Trying to convince him that he can still fight it, he doesn't deserve it, is the first hurdle to overcome. Then it's finding a 2nd opinion with the insurance. I have a lot of colleagues at various research institutions across southern California (Scripps, UCSB, UCLA, UC Davis, UC Berkeley, etc.) My last job was managing a grant from CIRM (California Institute for Regenerative Medicine) and I built up a network of top notch researchers in the field of stem cell science, including several people from City of Hope. Getting the names of great oncologists isn't the problem; it's convincing my dad and convincing the insurance company that he needs to be seen by them. It's so frustrating. This is an uphill battle in and of itself. I think what's most frustrating is that none of us have control over the situation. He has the final say and we have to respect his decision. We may not have to like it, and it will probably cause years of grief and regret down the road, but ultimately, its his life and his choice.

Jenyphero

Callaloo said:

Dad needs a better-informed opinion
Yes, it's possible to be stage IV with only a couple lymph nodes. It's not how many, but where they're located. Even a single malignant distant lymph node will render EC inoperable. That said, I'm not sure how a stage IV can be diagnosed so soon, without a biopsy of the ascites, or at least a PET scan (but without actual biopsy, even PET scan can be inconclusive).

First, a CT scan can only suggest malignancy, it cannot confirm it. I've had 5 CT scans with contrast in the last year. Whenever a scan detected pathologically abnormal lymph nodes, it has been followed up with a biopsy (when the node is in an accessible area) to either confirm or rule out maligancy. It will be hard to biopsy the retroperitoneal nodes, but it seems like the ascites can be extracted for biopsy.

I also had retroperitoneal adenopathy show up on my initial CT, but without ascites, and both the oncologist and radiologist told me that it was just as likely due to inflammation as cancer. Because malignancy was confirmed in other distant lymph nodes, we never bothered to confirm or rule out metastesis to the retroperitoneal area.

I know about false hope -- I've been through that wringer too. But it's important to get the staging right, even if all it does is confirm stage IV.

Second, the fact that stage IV is incurable does not necessarily mean your dad has only months to live (I think that's the generally accepted meaning of "terminal"). If your dad is medically fit, and the cancer hasn't affected his other vital organs, and he's treatable with chemo-radiation, I would ask the oncologist why such a dire prognosis so early in the game. It's this doc's apparent "shoot-from-the-hip" prognosis that makes me question his opinion.

Third, don't discount the idea of chemo-radiation even if it is just "palliative" as opposed to curative. The fact that treatment is palliative doesn't mean it's a waste of time. I have undergone palliative chemo-radiation and I'm still going strong more than a year after being diagnosed with stage IV. I'm still having palliative treatment, leading a normal life, and I expect to be around for a while.

The point of getting a second opinion is not just to find a doctor who will say dad is curable. There are other reasons, even if it confirms stage IV. The point is to consult a doctor who understands this particular disease and has treated this disease, and a general oncologist is unlikely to have sufficient knowledge.

Stage IV EC is not curable, but it is treatable, with the treatment goal being "stable disease". It's a goal worth fighting for.

My thoughts exactly
Thanks Callaloo. Those are my thoughts exactly. I'm going to start copying all of your responses and put them together for my dad. It's unlikely he'll ever sign up on this website. He's completely anti-technology. They barely changed their internet connection to DSL vs. Dial-up last year. However, if I can be the medium and pass along this information, I'm hoping he'll be receptive.

cher76

Jenyphero said:

My thoughts exactly
Thanks Callaloo. Those are my thoughts exactly. I'm going to start copying all of your responses and put them together for my dad. It's unlikely he'll ever sign up on this website. He's completely anti-technology. They barely changed their internet connection to DSL vs. Dial-up last year. However, if I can be the medium and pass along this information, I'm hoping he'll be receptive.

Lost reply!
I too posted a reply to you Monday and it disappeared into never never land! So, here i will try again.
My husband, aged 54, was diagnosed Stage IV with mets to the bones, in October 2010. Living in south Texas, we sought treatment at MDAnderson in Houston. We have been told it is inoperable and incurable. This said, palliative treatment was prescribed. Rickie has undergone 2 rounds of chemo treatment and one clinical trial which was a double blind study involving a placebo, and we think he received the placebo. Everyone reacts differently to chemo, so you never know how you will tolerate it until you try it. My husband has been lucky in that other than one bout of nasty diarrhea, he has been spared the debilitating side effects. As he has told the doctors, it is a quality of life issue. As long as he can "manage the cancer" and feel somewhat good he will continue to fight it. He wants desperately to live and we pray for time. We have three grown children and two beautiful granddaughters, and I have seen first hand how this cancer has effected all of our lives. Someone asked me today "and how are YOU doing?" and I told her, I am fine, you do what you have to do. I am in fight mode and will continue to be so until he says enough. I will pray that you can convince your dad to fight this disease to get a second opinion.
Cheryl

Callaloo

Jenyphero said:

My thoughts exactly
Thanks Callaloo. Those are my thoughts exactly. I'm going to start copying all of your responses and put them together for my dad. It's unlikely he'll ever sign up on this website. He's completely anti-technology. They barely changed their internet connection to DSL vs. Dial-up last year. However, if I can be the medium and pass along this information, I'm hoping he'll be receptive.

One more thing to pass on to dad
Your comment about dad essentially giving up due to the mistaken and misguided belief that he brought this on himself with his lifestyle choices makes me think of Christopher Hitchens, who is an alcoholic, heavy smoker, brilliant writer, famous/infamous atheist, and has stage IV EC. He is totally unapologetic about his lifestyle, says he wouldn't change a thing, even in light of his disease. Throughout his debilitating treatment, he continues to speak and write about his fight against this disease, and he is definitely in the fight, even to the point of volunteering himself for some experimental treatments to help us all.

He makes it pretty clear that blame and self-pity have no place in this particular fight.