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Dad newly diagnosed - Waiting for staging

AKRN2013
Posts: 22
Joined: Apr 2013

My father was diagnosed with adenocarcinoma last week. For the last few months he has been experiencing food getting stuck in his throat and retching when eating.  He has lost 7 pounds in the last month.  After several weeks of encouraing him to get checked out he had an EGD.  2cm mass located at the GE junction.  Pathology report shows invasinve moderately to poorly differentiated adenocarcinoma. He sees the oncologist tomorrow for staging and to determine treatment plan. He lives in California and his gastroenterologist advised he find a surgeon at Stanford or UCSF.  We are in the process of researching surgeons.  Would love to hear any advice, suggestions, or simply words of encouragement.   

 

 

 

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

First I would like to say welcome and I am so sorry you have had to find your way here. You will find this site extremely helpful. Everyone here here has first hand experience. My husband was diagnosed Stage 3 in September 2012. He had chemoradiation then surgery the THE surgery on March 22nd of this year. He is now home recovering. You will experience the rollercoaster ride of your life. All I can really say is if you are uncomfortable with any Dr, get a second or third opinion. Also research your Drs. This cancer is aggressive. Only entrust your father's care to a Cancer Center who has MUCH experience in this field. Best wishes to you. Always feel welcome to ask questions here, vent, or share your story. We really ARE interested and no subject is too small or too bug.

AKRN2013
Posts: 22
Joined: Apr 2013

Laura,  it is nice to meet you.  thank you for your reply.  We finally have staging:  Satge 3, T3N1M0.  The oncologist is recomending surgery first and then chemo and radiation.  She said that chemo and radiation before surgery is an approach they are takingin Europe but not here in the states.  I am confused by this because most of my research says chemo/radition first.  I will continue to research.  They meet with the oncological surgeon Friday.  I have asked to be teleconferenced in.  I have concerns that the surgeon he was referred to is not an esophageal expert.  He apparently is an expert in pancreatic cancer (in fact he was Steve Jobs surgeon) but I can find no data on his experience with esophogeal cancer.  Do you know of anyone who has used Stanford for thier surgery? 

Do you know how long after meeitng with the surgeon they schedule the surgery?  '

 

Thanks for your support!

Heather

South Side Steve's picture
South Side Steve
Posts: 23
Joined: Nov 2011

Welcome to this site, but sorry you have to be here. When I was first diagnosed with Stage IIB T2N1M0 esophageal cancer in November of 2011, my daughter introduced me to this site and I have found it to be very helpful and informative. Your nursing training will be an invaluable asset to your dad during his journey. I underwent chemo and radiation and then had the Ivor Lewis surgery in March of 2012. I recently had my 1 year CT scan and the results showed No Evidence of Disease! It's been a wild roller coaster ride since my diagnosis, but I survived and feel great today. I was very fortunate in that I had very few complications as a result of my treatments and surgery. Like everyone else, I had a pretty big weight loss, but that helped my blood pressure and cholestoral. Other than my previously favorite spicy foods, I can eat just about anything I want to. The biggest lifestyle change is I have to sleep with my head and chest in an elevated position. I bought an adjustable bed and it works great.

Don't be afraid to post any questions or concerns you have on this site. People are always willing to help. I found it very helpful for me to talk to persons that had gone through the surgery, so feel free to send me a private message via CSN Email and I will give you my contact information. Good luck to you and your dad.

Steve

AKRN2013
Posts: 22
Joined: Apr 2013

Nice ot meet you Steve!  It is nice to hear from a survivor.  I am goingto try to get Dad to join so he can network with other survivors who really understand what he is going through.  Right now I dont think he entirely understands what hes in for.  He seems to think that its a quick surgery, some chemo, radiation and he will be done. HE wants to know how soon after surgery he can come up to Alaska to go fishing (they have a trip planned for July that we need to try to reschedule).  Apparently the oncologist tried to gently explain that it will be a while before he's going to be going after Kings.  Please let me know if you have any advice to help him with understanding his diagnosis.

 

Thanks!

Dad'sfight
Posts: 155
Joined: Feb 2013

Hello, my father was T3N1MO, dx 9/27/12.  He did chemo/radiation and then had Ivor Lewis surgery 4/1/13.   His tumor was 7.7cm at the junction, and we were told with chemo/radiation he had a complete response.  We pushed for surgery, wouldn't take no for an answer.  Surgery has been rough, but we were told yesterday that all the nodes that were removed didn't have cancer. WOO HOO!!!!  When we were told the stage, I was devasted.  My father is only 55 and I was having a really hard time accepting the fact that I might loose him.  If you read my story you will see that we had major setbacks, but my dad's strength and courage was unbelievable. The fact's and percentages about survival were terrible, but I learned from this site not believe all of that.  They were right!!!! To be cancer free today at this moment is unimaginable.  Please take your father to an EC specialist.  There hasn't been enough data to prove the success of chemo/radiation then surgery, but I think my father is proof enough for me.  You can google (cross trial for EC) and find information about surgery alone or chemo/radation/surgery.  If Phoenix isn't too far, I highly recommend my father's team. 

 

AKRN2013
Posts: 22
Joined: Apr 2013

Thank you for sharing your story with me.  How exciting that he is oficially cancer free!! IT has been reassuring to meet people who have fought this cancer and won. 

 

Sounds like we are on a similar path. What kind of support did yoru Dad need during the chemo/radiation phase?  How was his recovery from the surgery (I will be headed home to care for him post-operatively and I am trying to determine how much time I can go and if it would be reasonable to bring my kids with me or leave them with my husband and a nanny.)  Its been very difficult being so far away during this. (Im in Alaska, the rest of the family is in Cali) My older sister has really worked hard to advocate for my parents and I generally get information tunnled through her. Its just frustrating not being there.

 

Thank you again for the information.  I hope you dont mind if I seek you out occasionally for information or support....

Heather

Dad'sfight
Posts: 155
Joined: Feb 2013

I live by my parents, so I was lucky in that way. 3rd week of chemo really hit my dad hard. I then started going with him because of blood counts and my mom didn't really understand that. My dad also lost j tube because of infection so he had to eat regardless of the pain so that was difficult. Howecer, he became really dehydrated so I stayed by his side for the remainder of chemo tx. The port was a blessing because I could hydrate him at home on the weekends through that. My sister lived 2000 miles away, but she decided to leave kids at home when she came. Probably good because I wouldn't want them to see him so Sick. Surgery was really tough, he couldn't come of ventalator. So I was there 24/7 until he was discharged. For me, I was the one in the family with medical background and I wanted to be there especially if complications presented themselves. Everyone's healing, coping, and symptoms are different. The Doctor's didn't want to do the surgery, didn't think he was steong enough. Knock on wood...he's healed better after surgery compared to what we started with. If I can be any help to you, please feel free to contact me. I would love to "pay it foawrd" as far as support. I received so much from others on here. It made my fighting for dad easier knowing that others have done it and had success. God bless, will be praying for you!!

dudley22
Posts: 3
Joined: Apr 2013

Hi I am Heather's dad. I have gotten a lote of information from everyone who has responded to Heathers request. It appear that I will start my chemo and radiation treatment next week for 5 weeks, but will know more after my meeting with my Dr at the cancer center on Friday. Not sure what to expect, but I am sure my daughters will give me plenty of advise(much needed). Very scared, but will get through it. I have lots of support from my friends and family. I am going to try to spend some time today resheaching treatments and effects. I hope to get some feed back on this site and will try to add my resposes as I can.

paul61's picture
paul61
Posts: 1111
Joined: Apr 2010

Dudley,

Like you, I was diagnosed with a 2 cm tumor at gastroesophageal junction. After surgery and chemotherapy I am back to doing the things I enjoy. I won’t try to convince you that it is an easy journey but it is worth it.

I wish you the best of luck as you go through treatment. Come back here often with questions as you move through the phases of your treatment plan. You will find a wide variety of experience on this forum.

As you approach surgery it is often helpful to speak to someone who has actually been through the type of surgery you will be receiving. If you would like to speak to me about my surgery, please send me a CSN mail and I will send along my telephone number.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

dudley22
Posts: 3
Joined: Apr 2013

thanks. I have 5 weeks of chemo and then surgery, but I will contact you when I get closer to that date.

Dad'sfight
Posts: 155
Joined: Feb 2013

Good support is great to have, your daughter sounds like she is definently an advocate for you, like I was for my father. We all were scared at first when dad started chemo and radiation, I remember that feeling like it was yesterday. I believe most if not all cancer treatment facilities are great to ease the patients anxiety and the family's as well. Once you get throught the 1st day, knowing how things work and what has to be done you'll get more comfortable with it. My father has a fear of needles, and the port was an absolute blessing. Radiation Oncologist gave my father a mouth rinse to help prevent blisters, it worked. Let them know when it becomes very painful to swallow or drink, they gave dad some numbing medication that was a drink, it helped. As your journey begins, don't hesitate to ask questions on here. This site helped so much, doctors try, but the tips we got from actual patients that have been fighting this battle was the best advice we recieved. I found myself going and asking the doctor for something specific because a patient on here suggested it. You will be in our thoughts and prayers, it's a lot to take in all at once but you'll get through it, just like my father did. GOOD LUCK and keep me posted.

jtebo1955
Posts: 46
Joined: Apr 2012

Hello,
I just read your story and wanted to reply with my story. I had chemo/ rad in Jan and Feb 2011, THE surgery in April 2011. StageIII? During surgery 11 lymph nodes removed, 1 positive. So, dr recommend 4 more rounds of chemo. That started in May and ended end of July. We had a Disney cruise with our kids and grandkids, planned before being diagnosed for Aug 2011, I got to tell you I never lost site of that trip and I went with little trouble. I napped if I needed too, ate small amounts..a challenge on cruise ships. But I had a wonderful time. I guess maybe I was lucky maybe in part I really didn't know what to expect. I had a good doctor and never had much trouble after surgery except with nausea and tired, but I think it was the chemo. I was doing pretty good the first couple weeks after surgery until I started the chemo again. Hope all goes well.

jrdials's picture
jrdials
Posts: 8
Joined: Feb 2013

Hi Heather & Dudley,

My story seems different from the others. I was diagnosed 1 year ago and was treated with Chemo only. I just got my 4 th cancer free scan 2 weeks ago - 2 PET, 2 CAT. Per Doctor's orders, I'm planning on some type of celebration on the 1 st anniversary of my last chemo treatment on Jun 6. So hang in there ! There's all kinds of possible positive outcomes and lots of great people to meet in this forum.

 

Jon

 

callerid
Posts: 99
Joined: Dec 2012

You know there will be many celebrating with you in spirit.

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