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Gail4beagles's picture
Gail4beagles
Posts: 15
Joined: Aug 2012

I could really use any advice from anyone about how to find the best cancer doctor in Northern California/Bay area for my brother to treat his esophageal cancer. I know this will be a difficult road and I could sure use some guidance and support. I feel lost and am very scared for him. I am not ready to loose my big brother. This is my first posting. I really hope there is someone out there that can help us in this journey. Thank you for listening.

Bermudagirl
Posts: 120
Joined: Jun 2012

Gail you certainly have come to the right place. I can't advise you on doctors in your area, but I'm sure some on this board can and will. You have found a "haven" if you will here, and be sure to take advantage of all the advice and information that will come your way. Best of luck to your brother.

Sandy

Gail4beagles's picture
Gail4beagles
Posts: 15
Joined: Aug 2012

A little background on my brother:
Age 66 healthy never been in the hospital until July 13th. White male, never smoked or was around anyone who smoked. Never experienced any acid reflux or had taken a tums in his life, active and healthy, good diet and always kept himself slim. No cancer or heart problems in our family background. Suddenly on or about end of May, he started feeling like he was getting food stuck when he ate. Obviously that progressed and he ended up with phenomia and had to go into the hospital on July 13th and was there for 11 days. He finally went home,but still has the tube draining fluid from his lungs. He ended up back in hospital for a blood tranfusion on August 3, 2012. He was able to begin eating again for awhile, but is now struggling again. They will not due any chemo/rad until he is stronger. They are saying his tumor (10cm) is too big for surgery. They told him Friday the mortality rate would be low if they tried surgery now.

My brother is scheduled to have a feeding tube placed on Monday 8/13/12. Exactly one month after is was admitted to the hospital for the first time on July 13th. This will be good as he is getting thinner and needs to fatten up before they will try any chemo/rad on him. He is still getting fluid in his lungs and still has the tube draining fluid from his lungs. He is very depressed and weak. He just can't believe this has happened to him. I can't either. I was the one that always had acid reflux issues, not him. I have been on Nexium for years...

The doctors mentioned the cancer is agressive, but I worry there is so much time wasting away waiting before any chemo/rad is done. The tumor monster is probably still growing?
I am so scared for my brother. His medical is Kaiser, The oncology doctor seems good, but we are not seeing a team being formed to fight this thing. I think that is important. I told my brother and his wife we are a team in this journey. He lives about 3 1/2 hours from me so I have been going for the appointments with the Oncology Doc and I have been doing as much research as possible. It is scary, but I feel knowledge is power. It is the only way I feel I have some control over this. I would just feel better if we had a team of Docs that had a game plan as well.

Gail4beagles's picture
Gail4beagles
Posts: 15
Joined: Aug 2012

Yes, My brother had a PET scan and the only cancer that showed up was that of the espophagus, so the only good thing is it looks very localized. That made his wife and I very happy and feel there is a chance to fight this. The one big thing my brother told me personally was I just want a chance to fight this. Right now he is such disbelief.

His Oncology Doc is Aurora in Hayward California. His Doctor has reached out as well, to find the best options, but I am very skeptical and want to do more. Thank you for your thoughts and any info you can provide. You have no idea how much it is appreciated.

Bermudagirl
Posts: 120
Joined: Jun 2012

Please feel free to message me and I will send you my gmail email. My boyfriend Dave, age 58, is in the middle of this process, and will have surgery in October at Hopkins. I certainly can't give you all the great info that William will have thoroughly researched for you, but I can tell you what it's like for a Stage III patient right now. So I'd be glad to talk with you about what you, your brother and your sister in law can expect. Don't despair, it sucks, pardon my french, but is doable! Keep the faith! And an excellent team is paramount. But William will help you with that. I look forward to hearing from you.

Sandy

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Gail, you are getting excellent advice on your brother. You can depend on this group for that. I just want to say that I hope you have had an endoscopy done yourself! If not, please schedule one ASAP. Having heartburn/acid reflux and taking Nexium is a big red flag for EC.
I hope your brother improves and gets to start on chemo soon.
Angie

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

My dad is also a Kaiser patient in NorCal. Let me just say... we CANNOT wait for him to be able to switch companies. We have had nothing but trouble. If you find this info helpful, please send me a personal message. We would love to hear about it. He travels to Irvine often to a hospital there that focuses on alternative healing. He is Stage IV. We wish you the very best and will be praying that the answers you seek will come swiftly. Please don't wait for info... this Beast waits on nothing!

~Jayme
Dad Stage IV EC SURVIVOR
DX 8/2010

Gail4beagles's picture
Gail4beagles
Posts: 15
Joined: Aug 2012

Wow, Thank you all for all of your thoughts and guidance. I am typing this with big tears in my eyes that so many people have to go through this ugly journey, but have taken some of their valuable time to send me a note. THANK YOU!!

I have ingested every word from each of you and have been online researching this topic since my brohter went into the hospital on July 13th.

Yesterday he got a feeding tube placed-I believe it was a J-tube, will find out for sure tonight when I speak to his wife Isabel. My brother's name is William too, we call him Bill. I call him Billy. Yes I used my real name and theirs on this site. They will try the tube today and if all goes well he will come back home. Baby steps. The tube will allow better nourishment, which will give him more strength. The plan is to get him stronger and then start chemo/rad in about 2 weeks.

In the mean time I have emailed William's doctor (the William on this site) and I will contact the others that were mentioned from all of you to find someone capable to work on my brother's case.

By the way, yes I have had an Endoscopy as well as a Capsule Endoscopy just last month.

The beagles are mine. They make me happy and I thought they would make anyone viewing my discussion smile. Dudley is on the right and Bo is one the left, son of Dudley.

I did not have a digital picture of my brother to post, but will do that soon.

You are all in my prayers. I will update this posting as often as possible to let all of you know where things stand. I am hopefull and am sending to all of you prayers and and positive energy.
Gail

ptom
Posts: 36
Joined: Jun 2012

I was diagnosed with squamous cell cancer located within the esophagus - with no metastasis - and it is not operable. Not all cancer is located in the esophageal/gastric junction. Sometimes it is located in the upper esophagus too close to the trachea and voice box.

ptom

ptom
Posts: 36
Joined: Jun 2012

William,

I've had several surgical opinions here in California. I did email your doctor (twice actually - last Thursday and again yesterday) but have yet to hear back. And honestly I can't see traveling to the other side of the country for surgery this serious when we have several outstanding cancer facilities in this state.

The surgeons feel that surgery is too risky as well as horribly disfiguring because the tumor was very high up in the esophagus, next to the trachea and voice box, not in the stomach area.

In October I was classified NED after the standard course of chemo and radiation. I had thirteen weekly IV infusions of Taxol from November through February and am still NED.

I trust my oncologist completely as he also helped me survive Duke's stage III colon cancer 17 years ago. I also trust my local surgeon, especially since he was referred to me by a friend who works at Johns Hopkins in Baltimore. (He worked with the surgeon for many years in Santa Barbara.)

ptom

PS I wouldn't trust my life to the Cancer Treatment Center of America. They will do anything they can until your money runs out and then you're on your own.

Gail4beagles's picture
Gail4beagles
Posts: 15
Joined: Aug 2012

Hi Ptom,

Thank you for your honesty. There is so much information out there that one is never sure what is real or what is hype. I was suspicious of the Cancer Research Centers of America and never contacted them about my brother. I'm glad I didn't. Some places rely on the fact that people are desperate for answers and help. What a crime. All you can do is go with your gut and hope that what it is telling you is the right thing to do. I to tried to email William's doctor and never received any reply back.

My brother went back into the hospital on Monday to get a feeding tube. He is still there. They have been having trouble getting the food to digest. After many tests it was concluded that since my brother hasn't been able to eat very well that the stomach has slowed down and needs to "wake up" with the food that it is now getting. This was suppose to be a one day procedure and has now turned into week. There are so many highs and lows with this entire process, it is exhausting! We are hopeful that the feeding tube will allow my brother to gain some weight and strength so we can move forward with the next step. The fluid in my brother's lungs has slowed as well and we are hoping while he is in the hospital they will remove that as well.

I wish you well. I have always felt that it is never the quantity of life we have, but the quality of life. Once the quality is gone then it is time for the journey to end. You will be in my thoughts.
Gail

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

I'm so sorry that I only have a split second here, but call dr. Kate Kelley from UCSF cancer center! She is amazing. I will write more later. JohnnyW on this board is doing great as her patient.

jaycc
Posts: 131
Joined: Jul 2012

It is alot hearing all this EC information, hang in there.You instincts are right to question what you are hearing. Keep asking questions until you are comfortable, get help from the pros in EC, its not a common cancer so there are some good cancer centers but that does not mean they are good at EC cancer.
You have found a very good website here, lots of experienced people that can give you information.
Another reference is Stephanie below in your area she is a patient from the ECawareness group in your area.

Stephanie Santos, survivor
San Diego, CA 92111
Map | ssantos@gilbaneco.com
Phone: (619) 504-7825

Lina71912
Posts: 15
Joined: Jul 2012

After surgery it is harder to transfer to another hospital if there is complication. That is what happened to my mother. Loretta and Billy highly recommend Dr. Nguyen in Irivne who does MIE. Also check out Stanford in palo alto which is closer to Hayward also do MIE. God bless you and your brother.

hopefulsd's picture
hopefulsd
Posts: 11
Joined: Jul 2012

I agree wholeheartedly in not settling for a "local surgeon" just because they are close by and perhaps the first ones that the oncologist and insurance company will refer your brother to. My dad was given a list of several local thorasic surgeons by his oncologist and insurance company. Most of them had never performed the mie. NONE of them had the experience with this type of surgery that our family felt comfortable with. It takes a lot of phone calls and research but you WILL find one. We did, thank God. The journeys back and forth to the hospital is well worth the journey through life that your brother will have. My dad is currently at Albany Medical Center, which is and hour and a half north of us. He had the MIE and is not completely out of the woods yet but is doing great so far and we are hopeful....all because we were able to find him such a talanted surgeon, who also studied with William's (on this site) surgeon. Take William's advise and contact the surgeon he mentioned in California. William will only refer you to the BEST. Best wishes and keep us informed.
Heather

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