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esophageal and stomach cancer

Lorie B
Posts: 11
Joined: Mar 2011

Has anyone had this and was able to be operated on? My father just found out he has cancer. They did a gastroscope, thinking he had GERD or reflux and they found a large tumor in the esophagus and some smaller in his stomach and the CAT scan showed one lymph node enlarged. We are waiting to go the oncologist on Monday. The stomach doctor wouldn't tell my mother what stage he was. I was talking to the Mayo Clinic and she said that it if we took him there he would have to go to the mets area because it's in both, meaning it metastisized and spread.

I really like what I am hearing about Dr. Luketich and he's the same distance as the Mayo clinic from us. Again, it's all up to my father, but I am trying to find the best information to present him with. He is going to be 76 years old this month, what a birthday present. But I really am heartened at what I've been reading on so many people doing so well for so long.

Lorie

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Lorie, Welcome to our family. I was not treated by dr.Luketich, But from what I've learned on here, If at all possible that is the way to go. I'm sure William or some of the others will be on to give advise on how to do this. Good luck on making the right decisions.
Prayers are with your Dad, Sandra

paul61's picture
paul61
Posts: 1090
Joined: Apr 2010

Lorie,

Welcome to our group. I am sorry you have joined us under difficult circumstances for your Dad.

It sounds like additional testing may be required to finalize the staging of your father’s cancer. Involvement of lymph nodes adjacent to the primary tumor site does not necessarily preclude surgery as a curative option. Staging criteria has recently been modified to change how involvement of lymph nodes is considered.

In addition, if your father responds positively to chemotherapy, and identified cancer areas are eliminated or reduced there is the possibility his staging could be re-evaluated and surgical options could be re-considered.

I would suggest at this point getting accurate staging and a treatment plan established with your oncologist is a primary objective. In addition, getting a second opinion from a cancer center with significant experience in treating esophageal cancer is valuable. If I had an option of going to Mayo or UPMC I would lean toward UPMC based on the experiences that have been communicated here.

Of course this is just my opinion based on my personal experience and others experiences I have seen here, but I can tell you that I had surgery and chemotherapy and have recovered and am back to the things I used to enjoy doing.

Tell your Dad this diagnosis can be overcome with appropriate treatment and support.

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
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

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

Lorie B
Posts: 11
Joined: Mar 2011

I am so happy I found this site. I've been looking everywhere for information. I am happy to find some from real people, not just a bunch of statistics. I am hoping that my father will make the right choices. All I can do is show him the information, it's up to him to decide. I am copying some of these posts so he can see he's not alone and people have successfully gone through treatment and come out of it doing well.

Thank you. I'll post what the oncologist says this Monday.

Lorie

Susie_Brendon's picture
Susie_Brendon
Posts: 141
Joined: Feb 2011

Hi Lorie,
I'm so very sorry to hear about your father. It's great though that you want to find out as much information as possible when it comes the treatment and care for your dad. It is necessary to find out what stage the cancer is in. We pray that it is not stage iv.

Your father should go through radiation and chemo first of all in his treatment plan. If ANY doctor says to just do surgery, GET A SECOND OPINION! Treating EC cancer has the best statistics when treated with all three: radation, chemo, and then surgery!

My husband has 10 radiation treatments left and 1 more round of both his chemo meds (cisplatin and 5fu). I knew absolutely nothing about this kind of medicine before he was diagnosed on Feb 1st. I learn more and more everyday. We meet with his oncologist this coming Tuesday. It will be at this appointment that we let him know where my hubby has decided to have his esophectomy performed.

In my research, I too, was so thankful for speaking to REAL people and not just statistics. Everyone on this site so very helpful and we all pray for one another - I will be sure to add your dad in my prayers this evening. I have a post on the site where many people replied. It was titled something like this "RESEARCH FOR SURGERY...HELP" or something like that. :-) Please, when you have a chance, go to that post (dated approx around 3/1)and read what everyone replied. It was so helpful to me and to my husband to read about real life surgery's that everyone went through.

I will keep your family in my thoughts and welcome to "our family" here on this site. You will find days when you really need someone to vent too...and besides for information, that's what we all are here for as well.

Susie
Husband - Brendon (38 year old)
Diagnosed 2/1/11 T3N1M0 EC

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello Lorie and welcome to you and your dad. I was a caregiver for my dad. Unfortunately, he passed last March from ec with mets to the liver. Take it one thing at a time. Get it staged next. Once that is done, then the drs can tell you what the next step will be. Usually it is chemo, radiation, surgery. If you can get to Dr. Lukeitch in PA, go for it. A second opinion is always recommended. Do your homework, start a journal, and most of all....keep your faith...and pray! We will be thinking and praying for you all.
Tina in Va

Lorie B
Posts: 11
Joined: Mar 2011

I took my dad yesterday to the oncologist. He has scheduled my father for a PET scan. He thinks he's stage 3. The doctor said the esophagus to the stomach is divided into 3rds. He said the second third of my father's esophagus has a large tumor and he has cancer into the 3rd/3rd of his stomach, plus the lymph node that swowed up on his CAT scan.

At first the oncologist was talking about chemo/radiation and then surgery. But then he started to say that maybe my father would just want the radiation. I felt he had already given up on my father, so I need to find a good oncologist in the chicagoland area. Does anyone know of one?

Also can you fax Dr. Luketich the results and see if he will work with you before you meet him in person? Since Dr. Luketich is a surgeon and not an oncologist, does he recommend oncologists?

I'm taking my dad in tomorrow to get his PET scan and talk to the radiation doctor. But I think my father is open to get a second opinion. I copied and pasted a lot of posts from this site to give him hope. There is not too many things worse than to stand next to your father and see him shaking and trying to hide it. I think the doctor made him feel he was beyond hope. I saw him perk up when I started to read stories from this site, especially those of Walt's.

Lorie

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

welcome Lori,
I hope the PET scan is soon--it is so hard to wait---and of course no one wants the cancer to grow. I am a daughter of a dad with EC too---seems there are a lot of them on here lately--it's just so hard to have a parent with cancer. I never realized that before being in that boat myself. My parents didn't want all the grim statistics--they just took one day at a time and did what their medical team told them to. Meanwhile-I am doing all this research and although I learned a lot, it is rather dismal. If they had done that same research, I am not sure he could have fought it as hard. One may not need to lie, but I think it is very important at this stage to see the "glass half-full" with your dad as much as possible. Being depressed doesn't allow the body to fight EC or heal from EC surgery as well. I find I get really down sometimes--but save that for private.

sorry to ramble. It is good that he is considering a 2nd opinion, but hopefully it won't delay chemo & radiation very long.
Keep us posted!
Kim

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Dr. Michael Gibson is the oncologist on Dr. L's team at Pittsburgh. He is an amazing and caring doctor. I have been on this journey with my dad since 2009. I have been to his regional hospital, Sloan in NYC and MD Anderson in Houston. I feel like I have been on a quest and an Odyssey. For the last year and a half I have heard the praises of the team at UPMC. I tried to get my dad here but couldn't get him to do it. Then as he went from stage 3 to stage 4b with mets to the liver and the doctors started talking about months to live he became more open. But it was really when we ran into a roadblock of using off label drugs and couldn't get Medicare to pay for them that things changed. Dr. Gibson, without having even seen my father and some emails from me was willing to go to bat for my dad to try and get him the treatment. So I flew him here from NO two weeks ago and now today he is back in Pittsburg for at least the next 6 weeks to receive the off-label experimental treatment combination of iritocan and Erbitux. Dr. Gibson was kind and patient and funny and talked to my dad honestly about the options and how important his quality of life during his final days. He said he didn't want to have to pry the chemo from my dad's hands but that it was worth a try to see if this would work because he has seen some remarkable results with this combination. All I can say is that the folks here are amazing, the family house is really comfortable and I would urge you to try to get here if you can. If you have any questions please email me.
Best,
Cindy

DanaMB3
Posts: 101
Joined: Dec 2010

Lorie - We are also in Chicagoland and went through a lot of research to get a good referral for an oncologist in the Chicago are when my dad was first diagnosed.
We were led to Dr. Victoria Vilaflor at the University of Chicago who came very highly regarded by many, including the first oncologist we consulted with at a more local hospital to us. She was recently named head of the EC department at the U of C - which is one of the top hospitals to treat EC in Chicago. Dr. Vilaflor has a reputation of being very aggressive with her treatment, which is what we needed. (My dad's diagnosis sounds somewhat similar to your dads). Long story short - we had Dr. Vilaflor create the treatment plan, and we had it carried out at an oncologist’s office closer to my parents home so they did not have to make the trip downtown every day for 5+ weeks (they live in the Schaumburg area). She also runs many clinical trials - if that becomes a desired treatment plan for your dad. My dad tried to get into one, but it was put on hold.

http://www.uchospitals.edu/physicians/victoria-villaflor.html

If your dad's cancer involves his stomach, this doctor might be a better fit - he was also highly recommended to us. Dr. Blaise Polite at the University of Chicago. We were told he handles lower esophagus and stomach cancers. We never met with him, FYI, he was just a recommendation to us from the first oncologist we met with.

http://www.uchospitals.edu/physicians/blase-polite.html

If my dad is considered operable, the surgery will be performed at the University of Chicago with Dr. Mark Ferguson with a MIE surgery.

On a side note - when we asked our first local/suburban oncologist for these referrals for the downtown/University doctors he told us he would not recommend anyone persue treatment at Northwestern at this time because they have had many staff changes recently and it's not very stable right now.

If you'd like more info I am happy to chat more through here or I can get my phone # to you as well!

sal314
Posts: 633
Joined: Jul 2010

We're in the Chicagoland area as well. My father saw an oncologist that was associated with Dr. Vilaflor, but he was treated at a different hospital. Though he worked with her team on my dad's case. Unfortunately, at the time of diagnoses, my dad was a stage 4 with mets to the liver, so surgery wasn't an option.

You definitely want to go to a top notch cancer center. I'd also recommend a second opinion, no matter what. Two brilliant minds looking at your case is always better than one, IMO. Rush is another very good hospital. My father went there for a second opinion regarding surgery.

I know the waiting is hard. Especially when you don't know the full story of what's really going on as far as the stage and extent of the cancer. However, it's prudent that you get all the facts and test results so you can make the best informed decision on a treatment plan. However, realize that depending on the stage and extent of the cancer, your choices may be somewhat limited.

Wishing you all the best.

Sally

GerryS's picture
GerryS
Posts: 237
Joined: Aug 2010

I had my Ivor Lewis at Mayo, Rochester, MN in March 2010. I am getting along fine after the surgery but make no mistake about it , it is a tough surgery and requires 3-4 months time to recoup. I was very happy with the Mayo staff and hospitals. This is only my experience and I was 57 at the time. I will keep you in my prayers as this is a important decision.

Gerry

Lorie B
Posts: 11
Joined: Mar 2011

Thank you for responding. Did you have the regular linear accellerator type of radiation or the tomo therapy one? The tomo therapy is supposed to be better for esophageal cancers:
http://www.ncbi.nlm.nih.gov/pubmed/17707195

I took my dad (and ma) for his PET scan and to see the radiation doctor today. The radiation doctor was surprised that my dad's oncologist just said to radiate without the chemo. I wish they had the tomo therapy machine as this place is real close to my parents house and it does both radiation and chemo there. The radiation doctor said they were very close, but I have to wonder. With the tomo they check every day to see how the tumor is doing, and adjust accordingly. With regular radiation you go 6 weeks, then wait 5 then they do an X-ray. Is that what they did with you?

I asked the radiation doctor if they checked the tumor to see what chemo drug is best and he said no. That they generally use a certain drug for esophageal cancer. I'll have to tell him about the her2.

My dad keeps saying he doesn't want surgery, but maybe if another doctor gives him hope, he might be more for it. It's such a touchy subject, since he could die on the table. But I will print what you said out and let him know that he is not alone and he's not too old.

We are hoping to have the results for his PET scan by Friday. I am wondering if I should just not push for him to go for the tomo therapy since he is already set up for radiation treatments for next Wednesday. The longer we wait the more growth.

I will tell him about Dr. Gibson, maybe he can confer with my father's oncologist or take over for that matter.

I will keep you informed and thank you so much, you are such an inspiration.

It would be nice if we got to stay at that place. I can do country driving, but city driving scares the heck out of me. It would be nice to have the bus to take us back and forth.

Lorie

BMGky
Posts: 666
Joined: May 2010

Lori, am sorry your family is facing this diagnosis. It is a shock to the whole family. It is great you are keeping your parents informed of the options. This site and the kind people who post gave me hope. When I got scared as my husband was undergoing treatment, I would come here and get hope. My husband was stage II B with no node involvement. He was 70 at the time of his diagnosis. Due to his age and medical history, they debated doing surgery but opted to go for it. He had a rough time with chemo and radiation and underwent the invasive Ivor Lewis. It is not for the weak of spirit; however, he had his post op 6 mos scan and there was no evidence of disease. He is feeling better each day except for the idiosyncratic digestive issues that pop up with the new digestive system. He is at the office every day. Was well enough to undergo surgery to repair a torn rotator cuff that he had had to endure throughout his treatment. His oncology team is pleased, and I hope his success will encourage them to consider giving "senior" citizens a chance. Heed the wonderful information you have been given by these previous posts. It gives your Father a fighting chance. Best wishes!!

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Lori,

Just wanted to mention my dad was 78 when he was diagnosed in December of 2009 --- he is now 79 and says will be here to celebrate my parents 65th wedding anniversary in May and his 80th birthday in November. So your dad is several years younger than my dad right now.

Yes the treatments have slowed him down, he has been in the hospital as a result of the treatments and unfortunately couldn't have surgery because his cancer has spread to his liver. But he is still here with us and still undergoing treatments. He is concerned with quality of life but it will be his choice when he decides that the medicine isn't working anymore --- not the doctors and not us either.

Good luck in finding the doctor who will work with your dad and your family to plan his medical treatment.

Best,
Cindy

Lorie B
Posts: 11
Joined: Mar 2011

Thank you guys so much for your comments. It really helps me to have hope. As you know when you look online they paint such a dreary outlook. My neice, to be nice, bought my father 3 cancer books, for diet, etc. My dad started to look into them and there it was about esophageal cancer being very hard to treat and not a good outlook. I have printed him off things I have seen on here to give him hope. And I hope it helps him to make the correct decisions for his care. This site is a Godsend.

Lorie

wings060
Posts: 2
Joined: Sep 2013

Hi Lori,

I see your post is dated some time ago Mar 2011 - how is your father?

I am a cancer survivor of esophagus cancer, stomach cancer and breast cancer.  I was told of my esophagus and stomach cancer in May of 2011 (it was stage 3).  And told of my breast cancer in August 2011. 

When I saw your post and the date - it was just about that time I was told of my cancer.  After seeing your post my first thought was how your father was doing. 

Charlotte

wings060
Posts: 2
Joined: Sep 2013

Hi Lori,

I am a cancer survivor.  I had esophagus cancer, stomach cancer and breast cancer.  I had chemo treatments, radiation treatments and surgery.  I read  your post and can see it goes back to 2011 - was wondering how your father is doing.

Charlotte

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