Dad newly diagnosed in Boston

Glombardo

Hi friends,

My 63 year old dad was diagnosed with stage IV esophageal cancer this week. It's been a roller coaster with Christmas and having to wait the extra days for results. He is in Boston and is being treated at the Dana Farber Center at Brigham and Women's hospital. Anyone have info on this facility?

He is being intentionally vague with us (his adult kids), but we know this is pretty horrendous news. Cancer has also been found in his liver and a little in his stomach. They are inserting a port on Wednesday and starting chemo shortly thereafter. The type of chemo is unknown as they are waiting for HER(?)receptor blood results.

Any hints on support would be very appreciated.  my sister and I are in Chicago so its extra hard as we can't be with him. Thanks all.

Grace

 

 

Amjosmom

So sorry to hear...

My Dad is also Stage IV. He has mets to his liver, bone, and recently his lungs. He was diagnosed in August of 2010. This is a very aggressive cancer and you should tell your Dad that he should be honest with you guys about what is happening. The best way to fight the disease is to have a positive attitude and a strong support system. You can't be strong for him if you don't know what's going on and honestly, you don't really have the time to be waiting for things to happen. I don't want to overwhelm you with negatives, but time is not on our side when dealing with the Beast. There are MANY things that can be done to slow down progression, but educating yourselves and being a strong advocate with doctors will be very helpful. It is a good idea to stay one step ahead of the EC. There are a lot of experienced people here to help. Don't be afraid to ask questions and get as much info on uour Dad as you can. The more we know, the more we can help. Also, I am not familiar with Boston at all. We're from California, so I'm not sure about the staff your Dad is currently with. I would definitely search for a hospital that specializes in EC. This will give him a jump on treatment. Your Dad is probably in shock and trying to protect you from this blow, but try your best to be understanding. There is little time to "pout". It's time ti FIGHT!!

callerid

Amjosmom said:

So sorry to hear...

My Dad is also Stage IV. He has mets to his liver, bone, and recently his lungs. He was diagnosed in August of 2010. This is a very aggressive cancer and you should tell your Dad that he should be honest with you guys about what is happening. The best way to fight the disease is to have a positive attitude and a strong support system. You can't be strong for him if you don't know what's going on and honestly, you don't really have the time to be waiting for things to happen. I don't want to overwhelm you with negatives, but time is not on our side when dealing with the Beast. There are MANY things that can be done to slow down progression, but educating yourselves and being a strong advocate with doctors will be very helpful. It is a good idea to stay one step ahead of the EC. There are a lot of experienced people here to help. Don't be afraid to ask questions and get as much info on uour Dad as you can. The more we know, the more we can help. Also, I am not familiar with Boston at all. We're from California, so I'm not sure about the staff your Dad is currently with. I would definitely search for a hospital that specializes in EC. This will give him a jump on treatment. Your Dad is probably in shock and trying to protect you from this blow, but try your best to be understanding. There is little time to "pout". It's time ti FIGHT!!

Hospitals that specializes in EC

Not sure how you find centers that specialize in EC's. My husband was diagnosed with Stage IV EC with mets to the spine in Dec 2012.. He recently completed 10 radiation treatments of a higher dose along with 2 weeks of Xelodol. Not much hope was given to us. I called MD Anderson but felt that bone mets was a game changer. Any information you can direct us towards would be helpful

Amjosmom

callerid said:

Hospitals that specializes in EC

Not sure how you find centers that specialize in EC's. My husband was diagnosed with Stage IV EC with mets to the spine in Dec 2012.. He recently completed 10 radiation treatments of a higher dose along with 2 weeks of Xelodol. Not much hope was given to us. I called MD Anderson but felt that bone mets was a game changer. Any information you can direct us towards would be helpful

Location?
Where are you located? I'll see what info I can find.

llamp0922

Your dad

Hi Grace,

Sorry that you find yourself here, but welcome.  Your dad is in a top-notch treatment facility for EC.  Dana Farber is among the best.  You can search on US News and World Report for verification.  I know of several people that have had cutting edge treatment for other cancers at Dana-Farber. 

I am a 5 year survivor of inoperable EC.  I didn't have distant mets, but I had some lymph node involvement and the tumor grew into and obstructed over 50% of my trachea.  Chemo and radiation and remarkable oncologists at Mass General Hospital, along with a positive outlook and tremendous support from loved ones got me to this day.  I am very, very fortunate.  But there are survivor stories out there.  Your dad is his own statistic of one.

See him if you can.  Attend an appointment and feel as though you are a part of his journey. 

Hugs,

Lisa, age 44

callerid

Amjosmom said:

Location?
Where are you located? I'll see what info I can find.

I'm in Iowa

I'm in Iowa.  Not much is offered for Stage IV. We could travel anywhere for a chance. I can't let him go yet.

Amjosmom

callerid said:

I'm in Iowa

I'm in Iowa.  Not much is offered for Stage IV. We could travel anywhere for a chance. I can't let him go yet.

I'm not sure where in Iowa you're at, but...
Some have recommended Mayo in Rochester. Is that near you?

paul61

Dana Farber has an excellent reputation for treating EC

Grace,

Your father is in an excellent facility for treatment of EC. There have been a number of survivors from this group that have had good results there. Of course, that is not to minimize the seriousness of a Stage IV diagnosis. Stage IV normally eliminates surgical intervention as an option but there are other treatment approaches that can prolong and improve your Dad's quality of life.

It is not unusual for someone your Dad's age to not want to burden his adult children with his challenges. But I think if you educate yourself about the treatment options for EC and particularly for the treatment and nutrition support options you can make suggestions to your Dad without seeming intrusive.

As you do your research, please ignore the survival statistics for EC. There have been a number of improvements in the treatment of EC that are not reflected in currently published statistics.   

I would suggest:

1.  Let your Dad know that you respect his privacy, but you are there for him in whatever support capacity you can provide

2.  Send him articles and suggestions you get from your research that he can review in his own time and make decisions

3.  Ask your Mom to share the specifics of his treatment plan and prognosis with you in private if your Dad is not comfortable discussing those details with you. Let her know you don’t wish to be intrusive but you really want to help in whatever way you can.

4. If you have been putting off visiting your parents in person because other priorities have been getting in the way, ignore those priorities and go see your Dad.

5.  If you have small children and your Dad is receiving chemotherapy be careful that your children do not have some minor cold or other health issue that may become a major issue to your Dad’s compromised immune system

Here is a reference that discusses EC and the diagnosis, staging, and treatment options.

"http://www.upmccancercenter.com/pdq_xml/cancer.cfm?id=54

 

Your Dad is in excellent hands. 

 

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/22/2009                  T2N1M0  Stage IIB

12/03/2009                         Ivor Lewis

2/8 through 6/14/2010       Adjuvant Chemo Cisplatin, Epirubicin, 5 FU

Three year survivor

 

Life may not be the party we hoped for, but while we are here we might as well dance!

 

GerryS

callerid said:

I'm in Iowa

I'm in Iowa.  Not much is offered for Stage IV. We could travel anywhere for a chance. I can't let him go yet.

Iowa patient.....

I am also from Iowa and had my treatment and surgery at Mayo Clinic in Rochester,MN.   I was Stage II at diagnosis and my oncologist is Dr Alberts.   Best to your family...

Gerry

birdiequeen

Grace,
Paul gave great

Grace,

Paul gave great advice.  I would recomend you go visit.  If your Dad wants to keep private about his condition, let him, but who ever his care giver is may need to talk.  Make sure you are there for him too, if he decides to open up.  Sounds like a good time for a sisters road trip!

Take Care,

Lee Ann

Josie60

Iowa

Iowa city U of I hospitals and clinics I would recommend for THE surgery. Dr Iannettoni. He does THE several times a month and I believe he trained up in Michigan.  DR Clamonn is the oncologist specializing in EC but I  only used him as a second opinion.  

 

I was diagnosed as stage 3 in March 2012. I had preop chemo and radiation locally in Waterloo. And had the surgery in IOwa City.  In Sept additional lymph nodes showed up on my PET scan so I am stage 4 and doing more chemo.   I have asked for an appointment in Mayo to see what other options I have for treatment .

jaycc

helping your Dad with EC Stage IV

Grace,

I'm sorry to hear about your dad. My husband was also Stage IV,with mets to liver. Her-2 positive. Mother was also cancer patient.

There are treatments for Stage IV, don't let anyone tell you otherwise. 

Just my opinion, there is a tough road ahead, take it one day at a time. But the nature of this beast, means the medical world has to move aggressively. If you think he would like to talk to other survivors directly, there is this site, and/or we can get you some phone numbers of other survivors if a phone call would be better for him. (here's a link to phone numbers,http://www.ecaware.org/get-help/regional-contacts/ )

Don't let scheduling get in your way, push, make the phone calls for him (if he permits) and get treatment started. My husband was dx Dec 26, (previous years) really hard but got all tests, scans and biopsy in, with help of his GP office. The first chemo was started immediately, within 14 days. He was hospitalized a week before first chemo, with weakness and concern of infection. So they ran antibotics to ensure first treatement could start.  Everyone seems to react differently.

If you not in town, and he agrees perhaps you can get a conference call into one of his appointments for family questions. Suggest you write them down ahead of time.  or as others have said, you may want to travel to him, taking turns.

It is tough, but if you ask your Dad a quesiton, be patient, and wait for his response. He may want to protect you, but he may also need to know he still has his children's respect.  I'm sure he has your love.

Put on your armour, keep positive.