Mayo or cancer center of America?
- This topic has 23 replies, 12 voices, and was last updated 11 years, 3 months ago by
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Porter, sorry to hear about the response you recieved from Mayo Phoenix. It is totally unacceptable for them to not provide more details. You deserve an explanation. I have no idea why they did not believe that you would benefit from a consultation; however, it in no way means that you are a “lost cause” as you put it. My guess is that the experts reviewed your images and reports and agreed with the current treatment plan — meaning that they have nothing additional to offer at this time.
I like your attitude of fighting on despite this setback. I am sure you will succeed in getting a second opinion. Perhaps you could seek out a visit to another cancer center on your week off from chemotherapy in between cycles.
Again, please let me know if I an help in any way.
Kind Regards,
Matt
Great!! Keep us updated! We will be there at the end of aug and sep…
I know your tired and frustrated but keep on going!! There are alot of things that wouldnt have happened if I just wouldn’t have made that phone call!!
Heather
You are not a lost cause….we don’t even go there. You must continue to find answers and these answers will come from a multiple of entities. I am not in a position of evaluating MD Anderson Phoenix however; I would not take their response as the ultimate voice.
Hugs,
Marionpfox, you must keep believing!! Don’t give up, like us , try some where else and who knows when they could find a cure. We got the same explanation, no benefit….I feel like we don’t have the time to waste and I am not giving up on my husband yet. Prayers go to you,
BrendaI mean would anyone know the answer to … Because they told me I wouldn’t benefit does that automatically mean a bad thing? Does that automatically mean they specifically think I’m a lost cause? I am trying to tell myself even if that is what they do think that I should just say F it and keep believing in my fight now matter what!
Good going, Porter. There are a few big hospitals “very” familiar with this cancer. You are doing everything right and don’t let this setback get hold of you. Keep on.
Hugs,
MarionThanks guys. I just felt discouraged and don’t know how to take that answer. It felt like they were saying no hope for you here goodbye. Heather I went ahead and submitted a request online thru mdanderson. Thank you!
PorterI can’t say enough about MD Anderson Houston. We were told by surgeons in austin that there was nothing they could do it was unresectable. Then went to MDA and first was told unresectacle then surgery! So you never know..and even if surgery can’t be done people are doing pretty good with stabalizing the tumor and living a pretty normal life from what Im reading on here! And there are so many things that was brought up to my husband if surgery can’t be done, its not easy but its something. I would encourage you to go to MDA or another large hospital and another opinion. Dr. Javle is my husbands doctor and we really like him! Hang in there!
Heather
Oh I am so sorry BUT that doesn’t mean you can’t go for a 3rd opinion somewhere! I think someone on here actually went for a 4th opinion and was helped! I am surprised that she didn’t tell you why. Let’s see what the others say on here, I know it makes you feel even more helpless but hold on here until you get some more posts! I am with you, I feel for you, be strong!
So I just received a call from the mayo clinic in Arizona and they said the dr reviewed my case and all she told me was that they didn’t feel I would benefit from the liver cancer center and that she was sorry. She wouldn’t go into any further details. Can someone help me on how I am supposed to take that news? It made me feel like I’m a lost cause.
hisprazr, well. I believe your Primary sure told you right! How are you doing?
Thanks for checking in on this with us and please keep us posted/updated on your progress. Best of luck to you!We are close to MD Anderson Houston so we made that choice. But, when asking our primary about CTCA he said we were right where we needed to be. His reasoning was this type of cancer is best served in a large research hospital since it is rare and not everyone has the expertise to treat it. The diagnosis we are dealing with is unresectible intrahepatic cholangiocarcinoma in both lobes and caudate area of the liver.
Pfox, I do believe that is the protocol in these ‘big’ Hospitals. I know at MDAnderson that I went to here in Phoenix, they present your request to a Board who usually decides what team one would be seeing at the facility. Since I am in just a ‘watch’ mode from my rare Cancer with only a year to go, I just switched back to a private office as I was not happy at our MDA here. I went for my 1st appt. last Thursday got called today that my CT Scan is Wednesday morning at an imaging center I like. I am happy with just a tad of anxiety. I think one more year from October cancer free and I am done!
My dad is going to Mayo….he is in Minnesota. He likes the doctors and they know what they are talking about.
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