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snook717
Posts: 52
Joined: Jan 2011

I was wondering if someone can help me out. Should the surgeon be involved before any treatment is started or can that be something that happens later? Also has anyone had to have their primary care physician write a letter to the insurance to see if they will accept a hospital that is not in their HMO plan? The surgeon at the hospital will accept the insurance but I was told that this is the next step. Thank you everyone for your help!

preacherchad's picture
preacherchad
Posts: 62
Joined: Dec 2010

hello snook;

I will tell you that we chose to get a second opinion from a surgeon prior to any treatments. This was the best decision we made. She walked us through it, laid out all the possibilites and explained why getting treatments prior to surgeory was the best option and how many.

My oncologist was going to move forward with an aggressive treament plan, with no surgery. This aggresive plan would have prevented my from healing properly when and if surgery would have taken place. As for as the other questions, i can not respond.

I am sure others will be posting much more indepth response to your questions. And they are much more qualified than myself.

chad

snook717
Posts: 52
Joined: Jan 2011

Thanks so much Chad. We will get the PET and CT results Tuesday. As of now assuming the cancer has not spread the doctor said he will get 6 weeks of radiation with 2 rounds of chemo lasting 96hrs each with the 5FU given at home. He said we will then wait 3-4 weeks then do the scans again and if everything is where he needs it to be he recommends surgery to be done by doctor Luketich in Pittsburgh. It seems like we've been waiting forever for different appointments and results and all I can think is that we need to get this started before it spreads even more. Thank you again for your response it is greatly appreciated!

cjmac49's picture
cjmac49
Posts: 110
Joined: Jan 2010

I would involve Dr. Luketich from the beginning so you get the type of treatment he desires. He can also tell you all about the surgery up front.

Good luck.
Jim

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

I agree with Jim. Dr. Luketich is the doctor that pioneered the minimally invasive surgery and we found that the surgeon dictates the whole process. They each like a certain kind of chemo and number of radiation. The chemo you are having is the chemo that my husband had recently, with the addition of Cisplatin. It completely destroyed the tumor and all of the cancer in his body. He went through the MIE January 5th and is recovering from the surgery now. I too was concerned about waiting as long as we did, but the doctors know how long the chemo is working in the body and they have to wait until after the chemo and radiation before doing the Petscan. They know the exact window that they need to work in. It is normal to stress over these things, but rest assured they know what they are doing! It sounds like you are doing it all right. Be sure Dr. Luketich's office is in charge of your case.

I pray all will go as well as it has for my husband. It is a rough road, but you can come out okay!

Linda

snook717
Posts: 52
Joined: Jan 2011

Thank you Linda. We are hoping that the insurance is going to approve the doctors recommendation to go to Dr. luketich when the time comes but as you said I believe he should be involved now. Do you know why your husband received the cisplatin as opposed to the carboplatin? I am so glad to hear that your husband is doing so well. The stories of hope help tremendously. Thank you so much.

Danielle

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

Danielle,

My father received the Caroboplatin instead of the Cisplatin because of the potential side effects of the Cisplatin. My dad was 78 at the time with type II diabeties and had loss of hearing. Cisplatin is very hard on the kidneys and also can cause hearing loss. Those two side effects caused the doctors to choose the Carboplatin instead. My dad got a mix of two chemo agents, Carboplatin and Taxol - and then had chemo + radiation.

If you have other questions please let me know.

Best,
Cindy

snook717
Posts: 52
Joined: Jan 2011

Hi Cindy,

Thank you for the information. The more I read the more I wonder why a doctor would choose Cisplatin as oppossed to Carboplatin?

Danielle

oriontj
Posts: 390
Joined: Jul 2009

Cisplatin and carboplatin are in the same drug family...dh's oncologist called carboplatin the little brother of cisplatin...each with their own side effects and the docs know them all....they are both platins...the platinum standard of drugs.

jan

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

Hi Danielle,

Jim is 68 years old and our oncologist told us that Cisplatin and 5fu were the drugs that he had had the best success with. Cindy is right, the Cisplatin is hard on the kidneys and they did a lot of extra flushing with fluids on Jim. He has had severe hearing loss since the chemo and he had enough before! It is a true problem for him and me. Once he recovers from the pneumonia he is going to see about a hearing aid. When I had ovarian cancer I was given Carboplatin and Taxol and I have some hearing loss in one ear, so the platin's definitely can affect your hearing. We are both alive and that is okay that we lost some hearing! I think each oncologist decides what is best for each patient and what has worked for their prior patients. I know our oncologist also conferred with a specialist in esophageal cancer in NY and this was the chemo regimen that they recommended.

I highly recommend you get the surgeon involved in the care now. Chemo and radiation are very hard to go through for the patient and also the caretaker. My husband ended up in the hospital for twelve days extremely ill. Hydration is so important and I wish that my husband had had a feeding tube because he couldn't eat for weeks. I am so grateful he has one now with the pneumonia because he hasn't had any appetite for two weeks. With the feeding tube he is holding his weight.

I hope this helps. Hang in there!

Linda

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