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What happened to optimism and support from doctors???

tclem
Posts: 22
Joined: Nov 2011

My 59 yr old father was diagnosed last week with Stage IV EC with affected lymph nodes in his stomach.

His first and 2nd opinion doctors both basically told him they can't do anything for him. Other than having difficulty swallowing, he feels fine. They are doing 6 weeks radiation and 11 weeks chemo but said after that, he'll just have to go home and wait. The doctor even told him today that he has less than a year, if he is lucky. What??? I'm all for putting your cards on the table but that just seems brutal to me.

I have read online that many people do additional rounds if they are feeling up to it. Did I find inaccurate information or is this doctor just giving up before she even starts treating him?

I really don't know where to go or what to do at this point. The local doctors aren't optimistic and no one else seems willing to take a chance on him either. My dad was ready to fight and now he is devastated considering his own doctor doesn't believe in a miracle. Is there anything to hope for?

T~

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

a quality 2nd opinion would be a good start! EC is a rare enough beast that not every doc is familiar with it. Find a quality Cancer Center in your area or travel a bit if you have to. There are several resources on the Internet that will provide information about Cancer Centers and their docs. Otherwise, William will post information as he is able. William is currently dealing with a family medical issue, so may be delayed in responding....

1st - Make sure the Stage IV diagnosis is correct.
2nd - Find a doctor that your father has confidence in
3rd - Begin treatments - don't delay. EC is a fast moving cancer and needs to be met head-on
4th - Have faith, find strength in family, and hang on. It's a roller coaster. BUT the EC board at CSN has a great crew and we're here for you! With a shoulder, with information, with an ability to research - we are here for you!

With prayers, love & hugs,

Terry
Wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11
Clean Path 09/13/11

ABC321's picture
ABC321
Posts: 52
Joined: Oct 2011

You know our experience with Drs has been that they mostly steer well clear of the 'how long' question, and i think thats appropriate, because everyone is different and responds to treatment differently. Who knows how long? I think the advice re; second opinion and a good cancer centre is very sound! There are many ups and downs on this journey as i am currently learning, but you certainly dont need your medical team to promote the 'downs'. You need them to be factual, and not give false hope, but not to KILL hope! This is a really serious disease,and whilst my partner and i continue to seek the right course of action, i am also very conscious to try and live well, enjoy the day, enjoy our family and each other, and not take things for granted. There is always something to live for!
Steve

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Steve,

I haven't had a chance to comment on one of your posts yet, but wanted to say I wish you and your partner well. I hope he responds well to treatment.

Let us know how we can support you!

Hugs & love!

Terry

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

T~,
I too am staged Ivb, and I am age 43. Male, scared, alive. Shocked. THAT is what WE mean by welcome here. Not a sick joke we are in a serious spot together here, BUT, we are family here and we help out with HONESTY.

There is simply nothing that CAN be done beyond palliative care IF it is stage IV, if indeed this doctor(s) are correct, and it is, if surgery is not an option. There simply is NO "cure" for EC at this point if there is no surgery to remove the cancer, after pre- and post-op chemo.

I am dying. I mean NOT to be so blunt or horrible to welcome you this way, but I doubt you want doctors lying to you more than me?

Where did your dad get diagnosed? Where are you located? This helps us help you. How many opinions have you had? Three is a good darting point, unlike any other disease.

There are a LOT of choices (although not many pleasant to face), if this is less than stage IV. Surgery is the ONLY "cure" if it is less than stage IV.

Tell us more. Who is your oncologist? What cancer center? Has there been talk of a feeding tube NOT through the nose but what they call a J-Tube? How much weight has been lost already? What other health issues exist at 59 if any?

Sorry for my bombardment with information and questions; I want to help guide you honesty as all the other posters do as well.

I will pray for you two and await your follow up post with more information and man others will chime in with information for you as well that I am sure I have forgotten.

God bless.
Eric

sangora
Posts: 218
Joined: Mar 2011

I am a stage IV and have been recieving Chemo for 19 months and counting. I consider myself one of the lucky ones in that my body seems to handle the chemo well. I have some side effects, but very few and the ones I have are well controlled with medication. My oncologist is of the opinion that as long as I am tolerating the treatments there is no reason to stop them. I am now on my 5th drug and doing well. My biggest problem is fatigue and I am learning to adjust to that. The idea that your husband would get 11 or so treatments and then stop( unless he wants too) is rediculous. There are many classes of drugs now that can be effective in slowing the progression of EC. I would get another view point. I have not spread beyond the original spot in the liver and it is stable. Good luck as you continue to learn and research. Where are you located? Sam

tclem
Posts: 22
Joined: Nov 2011

Eric and others:

Thank you for your response. I hate that this is how we all need to get to know each other but truly appreciate that there is so much love and support here.

To answer your backup questions:
Where did your dad get diagnosed? Bassett Healthcare/Fox Cancer Center in Oneonta, NY

Where are you located? Upstate NY. Oneonta, NY and Cooperstown, NY are the closest oncologist/treatment centers. He's certainly willing to travel.

How many opinions have you had? 3
Locally: Thorasic surgeoan - said NO. 2 oncologists - both said 11wk chemo/6wk radiation was best they could do. Three is a good darting point, unlike any other disease. We also had all of his info sent to Dr. Rizk at Sloan Kettering and he agreed that he wouldn't/couldn't do anything different. They all agree it is Stage IV.

Who is your oncologist? Dr. Kathleen Laveaux is radiation oncologist and Dr. Saito is chemo oncologist.

What cancer center? Fox Cancer Center in Oneonta, NY.

Port and feeding tube (through stomach) were already put in last week. He has lost a total of 9 pds in less than 2 weeks so they have instructed him to use Ensure through tube 3 - 4 times per day in addition to anything he wants by mouth. Until this, he had no other health problems.

Why would they tell him he can only do 1 round of treatment when other have done multiple?

Again, I greatly appreciate all the help and support from you all. I know everyone has their own troubles but it's nice to gain your experience. You will all be in my thoughts and prayers.

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

I just wanted to chime in with one more welcome. You've definately come to the right place for answers and for support. Eric asked a lot of good questions but I have a couple more to add for your doctors. Is your dad's tumor HER2+? Has he been tested for HER2+? If it is present in your dad's tumor there is a drug called Herceptin which can slow the growth of the tumor.
I'm confident others on the board with way more knowledge than me will be onboard shortly to welcome you with open arms and to provide more information and support than you'll ever get from any medical team.
Hugs to you
Rita

oriontj
Posts: 390
Joined: Jul 2009

my husband had stage 3-4 depending on which system is used and a lymph node in the clavical. We have never once that there isn't anything they can do. They put him in a clincial trial...did the radiation and chemo and the cancer was gone for a year. It came back in a little tiny spot..same place. They again started him on chemo...every three weeks til his neurophy acted up. Now one drug every week. I can't believe they said that.

He was diagnosed in July 09 and his onco said he is a chemo virgin. She is an EC specialist he did not stay locally but went to Chicago.

You need to go to a major cancer treatment teaching hospital and have someone who specializes in this look your dad over..

jan

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

My original oncologist said there was nothing they could do but make sure I was comfortable. No cure, Stage IV. Went to the University of Washington, Fred Hutchinson Cancer Center, and the oncologist there said, no, no that staging is all wrong. Possible T3N0M0, but we won't know for sure until we've studied the endoscopic ultrasound. (Which I just had.)

So I've gone from "worst case 3 months, best case two years" to totally indefinite, depending...

--Jerry

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