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Mom doesn't want surgery

tmchapman
Posts: 3
Joined: Apr 2013

Hi,

I am new to this site, and I am hoping I can get some advice. My Mom (72 years young) was diagnosed with stage 3 esophageal cancer. It is located very close to the stomach. She has finished the chemotherapy and radiation, which took it's toll. Now the PET scan shows the therapies worked, and they don't see the cancer - which I am sure you all know - that doesn't mean it isn't there. The doctors have told us that there is a 75% chance that the cancer is still there and they are recommending the minimally invasive esophagectomy. My Mom has decided the cancer is gone, and does not want to have the surgery. We don't know anyone who has dealt with this type of cancer before, and I am hoping to get some real life pros and cons to having and not having the surgery.

Can anyone help?

Tracy

Ladylacy
Posts: 465
Joined: Apr 2012

When my husband decided against further treatment, I was in agreement with him.  He is 76 and has gone thru laryngeal cancer (35 radiation and 3 chemo, then surgery).  Then in 2012 when he was going to have a procedure for a TEP cancer was found at the cervical of his esophagus.  At first he didn't want to undergo radiation and chemo again (first time in late 2010).  Surgery wasn't an option due to previous radiation, his age and the serious side effects that could occur.  So he underwent another 35 radiation and 7 chemo this time.  PET/CT and endoscopy showed clear in September/October.  Follow up PET/CT scan in January showed something in his right lung and a recurrence and large at the cervical of the esophagus.  He underwent a needle biopsy of his lung which showed cancer.  H&N Specialist did an endoscope and dilation and said the tumor was large and that due to the spread surgery was out, which my husband said he wouldn't do anyway.  When we met with the oncologist he said chemo wouldn't cure, only prolong and could hasten.  My husband had already decided against any further treatment.  He chose quality over quantity of time left.  To date he is doing well.  Not much pain, works in the yard, goes the the store, and pretty much does what he wants.

The surgery is hard at any age but you need to let your mother make the decision, because after all the decision is hers.  There is a lot on the internet about this type of surgery and all the side effects that many have, while others do good.  Just remember that everyone is different in how they respond to treatment.  And just because she doesn't want the surgery, doesn't mean the cancer is still there or won't come back even with the surgery because it does.  Esophageal cancer is aggressive.  My aunt went thru many rounds of chemo, radiation and surgery but still lose the battle after 3 1/2 years of fighting she said enough.  She was 71 when diagnosed and the surgery was hard on her.  She was in good health before the diagnosis.

Believe me when I said I know how hard it is when your loved ones make the decision that you don't want to hear, but it is their decision after all.

Wishing the best to your mother and you.  Sharon

ebawa
Posts: 37
Joined: May 2012

Hello Tracy,

 

I was diagosed stage III EC in Feb 2011, I had 26 radiation sessions and chemo then found it metastasized to my liver.  I had a new round of chemo and after I had new scans and endoscopy that found No Evidence of Disease in Oct 2011. 

I juice carrots and apples, drink Essiac tea and do H2O2 therapy every day.  I have been N.E.D. for 18 months now.  I have not had surgery and do not plan to do so.  I work full time, eat what ever I want and feel great. 

I feel treatment options should be a personal decision. 

Alan

 

 

tmchapman
Posts: 3
Joined: Apr 2013

Thanks to both of you. Everything I had seen was skewed to surgery. I want Mom to have the surgery. She had 28 radiation treatments, 1 month of 5FU chemo, and weekly oxyplatin chemo treatments, and I couldn't see going through all of that without finishing it. We meet with the surgeon on Wednesday. I am glad to have some real life information to go along with the doctors opinions.

 

Tracy

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

Hi Tracy,

I was stage III B, had chemo only - no surgery or radiation. Since June 2012, I've had 2 catscans, 2 petscans, and 1 esophagus biopsy. all with no cancer found. Praise God !

22C55
Posts: 2
Joined: Mar 2013

I had stage III EC in 2009. I did nine weeks of chemo which shrunk the tumor from a baseball size to a BB. Surgery was next with the upper third of my stomach being removed and the bottom half of my esophagus. Nine more weeks of chemo. The pathology of the tissue removed revealed stage I with no lymph nodes affected. (Praise the Lord!) I sleep propped up, don't eat as much, dump almost daily. Otherwise, Life is great!

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

Hi Tracy, I was diagnosed stage three with three effected lymph nodes, in 2007 at the age of 64. I took chemo and had the ivor lewis surgery. It has been five years and I am cancer free. I don't regret my decision for surgery, Because it is the only  cure, even though that is not always a sure thing. Everyone reacts differently to treatment, including surgery. For me it was the right thing to do. I have adjusted to the new stomach and enjoying life to the fullest. I agree with the others that the decision has to be hers. I have asked my family to respect my decision about treatment  if I ever have a reoccurance. Share with your mom my story and others that are own this site. That's what we're here for, to give and receive help from the survivors and caregivers.

Praying for the right decisions for your mom,

Sandra

Gavin Campbell
Posts: 1
Joined: Feb 2013

There is nothing easy about any of this, including the decisions which must be made.  I was diagnosed in April of '12 and am now just seven months out of treatment, 27 radiations and 6 chemo.  I was pressured, to some extentd, by my radiation oncologist, to have the surgury and simultaniously discouraged by my primary oncologist.  To be fair, I must tell you that I have a tumor on my kidney competing for thier attention.  I went to another renowned hospital for a second opinion regarding surgury and got no new information.  Given that surgury is no guarentee of cure I opted not to put myself through the recovery and not to make more difficult, kidney treatment should it become imperative during recovery from EC surgury.  My oncologist told me that I would never know whether I had made the "right" decision regardless of the outcome and he is right. What is important to me is that I reach a level of acceptance suitable to all outcomes.  I have, and it sounds as though your Mom has, as well.  I am showing NED after my second PET and while that is the best news possible, it only means what it means!  Today I am well and surrounded by the people I love the most, as is your Mom.  Love and respect her choices.  Be at Peace,

Gavin

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

Hi and welcome, I haven't been here too long, 7 months now. My husband Larry was originally staged a stage T3N1M0. After chemo and radiation his follow up pet scan, and barium swallow showed that the original tumor had shrunk considerably yet he had alot of lymph activity which proved to be benign. He had reservations regarding surgery because he felt his treatment had beeen so successful "why not do more treatment". Surgery is a scary thing so I can understand the fear. His surgical pathology restaged him at Stage T2N0M0, even though they found two new tumors that didn't show on scans. 2.5 cm one in the upper esophagus and 2cm one straddling the ge junction. His original tumor was mid back of esophagus. I thank God for his bravery to endure surgery. The cancer was already spreading. We have 14 grandchildren together, age 14 and younger. We jokingly call them "the little people", When he told me he wasn't having surgery I told him quietly he needed to tell the little people himself, one day when they were all here for a family gathering.  He decided he had to do the surgery after receiving some much needed hugs and loving from those he loves so much. I would encourage her to move forward. That's just my feeling. The surgery is rough no doubt about it. But the alternative is harder.

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