Input needed-- I don't think my Dad's getting the best treatment

My Dad is being treated for EC by the VA in San Antonio.  Before his surgery, he was ordered 3 rounds of chemo treatment.  No radiation... it's not available at the VA and has to be done at a cancer treatment center.  I suspect my Dad didn't get radiation because of this.... the VA would have to pay for it.

My Dad didn't make it past the 2nd chemo treatment; he was in so much pain they did a CT scan and the tumor had not shrunk.   They took him off and surgery was scheduled a month later.

During surgery, they removed 15 lymph nodes.  8 of those came back as mucinous adenocarcinoma. 

We met w/ his oncologist yesterday at the VA and he is continuing the same chemo protocol, despite the fact my Dad didn't respond to it before.  Is this normal?  He said they are more successful if they follow the latest protocol. 

Chemo meds include:  5-FU, Cisplatin, Epirubicin.  The 5-FU is a continious drip via his port, Cisplatin is given once/week and Epirubicin is givin every 3rd week. 

I also asked his doctor about radiation and why they didn't try it in the first round.  He said that gastic cancers are not treated by radiation.  HUH???  Almost everything I've read includes radiation as part of standard treatment for EC.  When I said that, he repeated himself.

Your input would be greatly appreciated.  I'm concerned by the number of lymph nodes with life cancer cells after my Dad had 6 weeks of the chemo protocol, and the tumor not responding.  I'm afraid he'll go through 9 weeks of hell for nothing.  :( 

Unfortunately, he does not have health insurance and has to get his treatment through the VA.  If I don't think he's getting the right care and I have enough information to prove it, I'll file a complaint through the patient advocate.  I just need data to support what my gut is telling me (I think they are trying to control cost of his treatment). 

Thanks!!!

 

On 8/27/2009 Bobsdaughter wrote:

My Dad is being treated for EC by the VA in San Antonio.  Before his surgery, he was ordered 3 rounds of chemo treatment.  No radiation... it's not available at the VA and has to be done at a cancer treatment center.  I suspect my Dad didn't get radiation because of this.... the VA would have to pay for it.

My Dad didn't make it past the 2nd chemo treatment; he was in so much pain they did a CT scan and the tumor had not shrunk.   They took him off and surgery was scheduled a month later.

During surgery, they removed 15 lymph nodes.  8 of those came back as mucinous adenocarcinoma. 

We met w/ his oncologist yesterday at the VA and he is continuing the same chemo protocol, despite the fact my Dad didn't respond to it before.  Is this normal?  He said they are more successful if they follow the latest protocol. 

Chemo meds include:  5-FU, Cisplatin, Epirubicin.  The 5-FU is a continious drip via his port, Cisplatin is given once/week and Epirubicin is givin every 3rd week. 

I also asked his doctor about radiation and why they didn't try it in the first round.  He said that gastic cancers are not treated by radiation.  HUH???  Almost everything I've read includes radiation as part of standard treatment for EC.  When I said that, he repeated himself.

Your input would be greatly appreciated.  I'm concerned by the number of lymph nodes with life cancer cells after my Dad had 6 weeks of the chemo protocol, and the tumor not responding.  I'm afraid he'll go through 9 weeks of hell for nothing.  :( 

Unfortunately, he does not have health insurance and has to get his treatment through the VA.  If I don't think he's getting the right care and I have enough information to prove it, I'll file a complaint through the patient advocate.  I just need data to support what my gut is telling me (I think they are trying to control cost of his treatment). 

Thanks!!!

 

My mom does not have insurance either. When she was dx in April, I was told that due to her stage IV EC with mets to lymph nodes and possibly lungs, she was only going to have chemo, no radiation. The doctors ran some tests and biopsy of her lymph nodes but the result came back negative. They can't biopsy her lungs due to the nodules <5mm. So even they had doubts of mets, I pushed them to give mom combined radiation and chemo. I also asked her gatro doctor to push radiation for her due to her excruciating pain in her esophageal. I wrote numerous emails to her doctors expressing my concerns. I copied the sucessful stories from this site and sent to her onc. Her onc told me they are rare cases, and I responded "they are real cases". Now my mom had finished radiation, and one cycle of chemo, and her pet results are excellent.

I read your other posts too and understand your dad has stage II adeno. I was told by mom's onc that only 20% people respond to chemo. And I think that squamous cells tend to respond slightly better than adeno. Your dad has the advantage of finding early, and had the surgery to remove the tumor. Did the doctor say that he has removed everything? The protocol your dad on has sucessfully treated many EC patients, including stage IV EC. Most people who had chemo and radiation before surgery have the goal to shrink the tumor so during surgery the doctor could remove everything. If your dad's tumor has been removed completely, chemo is just preventing the cancer from coming back. My thinking is that radiation at this stage may not be as important. If your dad has hard time tolerating chemo, I would talk to the doctor to reduce the dosage. It is better to have chemo at smaller dosage, than not be able to tolerate it at all.  

Please keep us updated on how your dad is doing. I totally understand your worries and concerns. My prayers and thoughts are with you and your dad.

May

Bobsdaughter, I am also having my follow up care at the VA in Massachusetts. My chemo and radiation were given at the same time and I was taking Cisplatin and 5FU with daily treatments of radiation for 28 days. My followup care at the VA is only for CT scans and my oncology Doctors are through my private insurance outside the VA in Massachusetts. Please approach your fathers VA Doctor and ask him to put in writing why no radiation is being given and I would take whatever he writes and see his Primary Care Doctor at the VA first and complain, if that does not work, file a complaint with the patient advocate and then contact your Congressional rep. in your home state immediately. Please post your results and if this fails I will put you in contact  with someone for an answere.  Phil A.  Another Vet

I agree.  With all the hype about health care, call your congressman/woman if your Dad is not getting the care he should.

The radiation is generally used to shrink the tumor if possible, with the chemo being systemic so it will go after cancer cells anywhere in the body that might have gotten away from the original site to kill them. Seems that if they were able to remove the tumor successfully, there would be no reason to subject him to radiation now. Does seem most, but not all have some radiation, but sometimes they do not use it because it is contraindicated for some reason (doesn't sound like the case here).

He was at stage 2, until they found lymph node involvement.  Now, he's stage 3.  But they did get everything out; his surgeon is confident of that. 

Unfortunately, my Dad's VA  primary doc is a quack.  My Dad presented with food getting stuck in his esophagus, trouble eating many foods, black stool,  & significant weight loss over a short period of time.  After a stool sample tested positive for blood, he ordered a colonoscopy.  My Dad's friend suggested he call his doctor and ask for an endoscopy, since that is where the problem is.  Fortunately, he agreed and he had both done.  Colonoscopy came back completely clean but they found the tumor in his esophagus.  Since getting his test results, he hasn't gone back to that doctor.   

We are working on getting him a NEW primary doctor at the VA though.  I wish he had private insurace; we definately would be going to the Central Texas Cancer Center.  His surgeon had set up the radiation because that's standard protocol for the patients he operates on.  He's NOT VA; he contracts with them for this cancer.

I'm more concerned about the protocol not being modified the 2nd time around, since wasn't responding well the first time.  The whole radiation issue I brought up was more around me feeling like they are more concerned about cost.  I think it wouldn't do any good for radiation at this point.  I don't have any trust in that doctor, which isn't good.

 

 

Bobsdaughter,  Please contact Jim Strictland at www.vawatchdog.org  and write an email to him explaning what you have posted here on the forum and Jim will put you in touch with the right people an a solution to this bull at the VA hospital. Please do this immediately for he is the most dedicate patient advocate that I know helping thousands of veterans yearly.I wish you the best and also your father in resolving this. Please post your results with Jim.  Phil A.