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Second Opinion

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

We went to the Huntsman Cancer Inst. on July 28th. We met his new onc. We really like her and the place and the other staff that we were able to meet. How ever the prognosis is still the same. No chance for surgery. We really didn't except that to change but I guess a little part of me didn't want it to be off the table completely. She said that because it is in multiple places that surgery isn't an option. John was hoping that he would get a break from the Chemo but she scheduled two more treatments this month. He had a CT scan on Monday and she said she would call us on Tuesday and let us know the results. We were waiting for her call all day and she didn't call. I was getting a little upset and then John for some strange reason turned on his cell phone and she actually had called and left a message the night of the CT scan. She said that she had not got a chance to compare the lung mets with his Pet scan that was done before he started chemo but the liver mets had shrunk down quite a bit. She said she was going to put it to the board today. I called and left a message for her to call us and tell us what the lung mets looked like and the adrenal gland. She did call us this afternoon and said that the lung mets had shrunk down too and so did the spot on the adrenal gland. She said that because the lung mets were smaller that was proof that they were cancer too. I had asked that because on the Pet scan they seemed to me to be small and light blue in color. Only one had a tiny red spot on it. The liver was bright and yellow and red. Looked pretty nasty to me. She said that it was all in his right lobe. I didn't even think to ask about the board!!! I will next time we see her.

John will see her on the 18th and he is going to see what she thinks of him taking a little break from chemo. Not to long only miss two treatments. Him and his dad are going down to Vegas to see our son and his wife and our beautiful grand-daughters. Oh and of course the Utah Vs. UNLV football game. I get the feeling from her that this won't be a problem.

I asked here about the Speres that I had heard about. She said that they weren't doing them anymore becauseit wasn't approved yet and they cost 75K a treament. I thought I had read on another post that they had been approved?? They will be keeping him on the 5-FU + avastin. I am rambling just wanted to let you all in on whats goin on. You all have help us so much.

Paula

mom_2_3
Posts: 965
Joined: Nov 2008

Paula,

Sounds like things are moving in the right direction with chemo but I would still suggest you see if a third opinion at Memorial Sloan-Kettering would be possible/feasible for your husband. I know patients at MSK that have had lung mets but have still received liver resections. I don't know if this oncologist felt he was not resectable was due to the multiple locations (liver/lung) or multiple lobes of the liver (I have heard that some oncologists tell patients they are not resectable if multiple lobes are affected). Of course the final word on Huntsman will be the surgical oncologist's opinions. I had an oncologist tell me I was not resectable but a surgical oncologist tell me I was. You can imagine whose opinion I trusted more.

If you can make it to NYC to see the famed Dr Personality it may be worthwhile to you. If you need a telephone number please PM me.

All the best,
Amy

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Thanks Amy,
I wish we could but we don't have the cash. Even if we did our insurance wouldn't go for it.
I am still keeping up hope. I have heard that the tumor board looks at everything. We may go get a third opinion but are limited because of where we are at and our insurance.
She said not an option because of it being in multiple organs. She did mention that if the lung mets and the spot on the adrenal glad went down and stayed down. Maybe...but she said she has never seen this happen before. She said there were still several options for treatment open. We didn't get into them at this stage of the game. Thanks Amy

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Paula,

I just wanted to let you know that when I had my liver resection in May '08, I had it done while I still had some small lung mets. The lung mets were no longer lighting up on the PET at that time & I believe my surgeon felt what remained in my lungs may have been "shells" as he called it & he still went ahead and did the liver resection. I don't know if he would have done it if the lung nodules had lit up at the time or not.

As someone else already mentioned, there ARE surgeons who will do the surgery with other mets in the body. I suppose it would depend upon how many, where, their size, etc.

Just thought I'd let you know & you can bring up to the doctor that you've now heard of at least two people that know of or have had a liver resection with other mets.

Take care and I wish you all the best-
Lisa

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

We will just have to see what the board says after some more chemo. I hope it will change. I read that all the long term survivors have had sugery. This makes me want it to be possible more. I am still going to talk with her about it and other things too. I am not giving up hope. Thanks

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I also think you should get another opinion.The treatments sound like they are working.See what the board says.Best wishes,and I will pray for you both.

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Paula,

Less than 20% of us will ever be candidates for liver resections. That doesn't mean there aren't options. Just because "they" don't do SirSpheres, doesn't mean he won't qualify or that insurance won't pay. Many insurance companies pay for Y90, most need a little pressure. I can guide you to that if you are interested. What about stereotactic radiation or external beam radiation? Chemo embolization, HAI pumps....there are so many options out there. Don't wait for your onc to offer them. Don't rely only on what is offered at one facility. Keep digging and don't give up.

Don't let a medical onc determine if he is a candidate for a surgical or radiation procedure. Make sure he is evaluated by the entire team.

In January I was a candidate for only ONE procedure. Without it I would be dead now. Only a small number of rad onc in the entire country perform this, and today I thanked him again for saving my life. I don't know how you thank someone for that.

You know your family is in my prayers,

Kimby

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Thanks Kimby. I just might be in touch with you on Y90. And get more info from you. You have been such a great help. Glad you are back on the board. Great picture of you guys. Love to both of you Paula

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I think it's very good news that he is on the tumor board. That way everyone-including the surgeons-look at the case. Although i haven't needed it, the Huntsman does do nuclear medicine so keep pushing to see what's available. I'm thinking about you and your family lots.

Take care, Leslie

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Hi Leslie, We will be seeing Dr. Jones in two weeks. We will here what the board thinks then. I am not sure how it all works yet but she did say she was going to take it to the board. I am wondering how often they do this. He had Chemo today up at the Huntsman and I thought everyone was so great. I will not leave any stone unturned. I have already started a list for our next visit. Thanks for thinking of us. You take care too. Paula

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

I'm glad to hear about the shrinking. That's good news! It'll be interesting to hear what the board suggests as a next step.

I'll be praying for y'all.

*hugs*
Gail

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Thanks Gail. It is good news ya just always want more. We are glad that they are shrinking and the Chemo is working. You just hang on to so much hope. We have to. Thanks for the prayers we appreciate it. Best to you. Paula

hopefulone
Posts: 1048
Joined: Jan 2007

Hi. I know first hand how valuable 2nd and third opinions can be as my husband has been told twice in the last 3 years not resectable... yet he has just had his 2nd liver resection last week (entire rt lobe). It's important to find an aggressive surgeon who thinks outside the box. Just a suggestion - you can sometimes send cd's of ct's and pet scans and get an opinion without travelling in person . I have done this. One even called us at 9pm at nite at home. Contact surgeons via email (check hospital sites also) and explain the situation and ask if you can send them cd's for review. If they think they can do surgery, you can appeal to the insurance and if they agree you can't get the same quality treatment in your home state, they will usually pay for it. Also, extrahepatic areas do not always mean a liver resection can't be done! Others have had lung & Liver mets resected, especially if it's in one lobe only of liver. Good Luck & God Bless.

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