I got second opinions- HAI pump, HIPEC, and now decisions

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Spazzyjanet
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Joined: Mon Oct 01, 2018 3:28 pm
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I got second opinions- HAI pump, HIPEC, and now decisions

Postby Spazzyjanet » Thu Nov 08, 2018 5:01 am

So I am back from two days of second opinions from the James in Columbus OH (ranked #20 nationally). I am locally receiving treatment from a center in Dayton.

As they say, you get what you ask for. Now I have some decisions to make- especially with regard to surgical options.

Liver mets:
My highly respected local surgeon wants to go with an aggressive resection and ablatement of my liver, and believes that he can do it in a way that will substantially limit the risk of it coming back.
The highly respected second opinion surgeon does not think it's possible to resect/ablate everything in one surgery, and believes that doing a partial resection and installing an HAI pump is my best chance to rule out recurrence. (note: I know that these have been discontinued, but they still have them in stock at the James).

Potential for Peritoneal Involvement/Spread:
(Background: The general surgeon who did my colon resection removed a single cancerous node from the peritoneum that may just be something that dropped from the colon. He says that he didn't see anything else, but nobody- including myself- is relying on this since this same joker confidently wrote off my liver metastasis as a hemangioma when there was clear evidence at the time to support otherwise.)

Local surgeon says that while he is in there he will take a look at my peritoneum and if he sees anything lay down a HIPEC application on the spot.
Second opinion surgeon wants to rule out peritoneal involvement before surgery. First with an MRI focused solely on the peritoneum, and then laparoscopically. If there is involvement, she can lay down HIPEC, but the HAI pump is not an option.

I love the simple, aggressive approach of the local surgeon. However, with the second opinion I am now afraid that it might be too aggressive or overly confident, and I am afraid of risk of it coming back. On the other hand I also worry that defaulting to the HAI pump is more of a "treat this like a chronic disease" versus a "cure" mentality. I am 40 and am not quite ready to give up on an approach that could potentially cure me and allow me to grow old and retire one day. Getting to 50 with a pump would be amazing, but I don't want to go down a road now that could limit my chances for cure long-term.

For those of you that have experience with either of these approaches, do you have any thoughts?
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

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cptmac
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Facebook Username: Dorothy McGrath

Re: I got second opinions- HAI pump, HIPEC, and now decisions

Postby cptmac » Thu Nov 08, 2018 9:14 am

When I was dx'd over 14 years ago, things were not what they are today. I was given six months to live but said I could die at any moment. I wanted to find the super doctor - I went several places.

I would suggest getting another opinion from Dr. Kemeny or head to MD Anderson or even the Mayo in Rochester MN.

A LOT of places turned me down but the University of Minnesota was the right place for me. It was 16 hours round trip from where I lived.

So I suggested getting another opinion from other great doc's.

When you say - "HAI pump is my best chance to rule out recurrence. (note: I know that these have been discontinued, but they still have them in stock at the James)."

Only the Codman pump is being discontinued. I used the Medtronic pump, which they are still making, and I had no problems with it.

I looked at a study concerning this study and it stated that 67% of patients who used the HAI pump were still alive 10 years out. I'm guessing the reason they have't predicted 15 years out is not too many patients have made that milestone yet. I'm at year 14 and I was the second person at the U of MN to do the clinical trial.

Good luck with your decision. You will choose the best one for you.
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

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juliej
Posts: 2866
Joined: Thu Aug 05, 2010 12:59 pm

Re: I got second opinions- HAI pump, HIPEC, and now decisions

Postby juliej » Thu Nov 08, 2018 6:52 pm

First of all, the good news is that you have lots of options. That's a great position to be in, even though I agree with you that the decision-making process is unnerving!

Spazzyjanet wrote:My highly respected local surgeon wants to go with an aggressive resection and ablatement of my liver, and believes that he can do it in a way that will substantially limit the risk of it coming back.
The highly respected second opinion surgeon does not think it's possible to resect/ablate everything in one surgery, and believes that doing a partial resection and installing an HAI pump is my best chance to rule out recurrence.

The stats on recurrence in the liver after a resection aren't good. Somewhere in the vicinity of 80% of patients have a recurrence in the first year. I'm not sure what gives the local surgeon his confidence in it not recurring, although I like his aggressive approach.

The second-opinion is more realistic to me. HAI pumps have been proven to prevent recurrences in the majority of patients who have them. The advantage to a second resection is that the remaining mets would be smaller (and likely dead) by that time, which would provide an extra degree of confidence in the outcome.

Spazzyjanet wrote: On the other hand I also worry that defaulting to the HAI pump is more of a "treat this like a chronic disease" versus a "cure" mentality. I am 40 and am not quite ready to give up on an approach that could potentially cure me and allow me to grow old and retire one day. Getting to 50 with a pump would be amazing, but I don't want to go down a road now that could limit my chances for cure long-term.

Getting an HAI pump is not treating it like a chronic disease. It is implanted, at least at MSKCC, with a "cure" mentality. As soon as your liver stays clear for a few years, the pump is removed. A strategy involving a two-stage liver resection with the addition of an HAI pump might be a smart move in terms of getting to long term survival. I speak as someone who has an HAI pump; I am convinced I am alive today because of it. I also had an aggressive liver resection and have remained clear since my treatment ended. I am due to have the pump removed in a few months.

You have lots to think about here, especially with possible peritoneum involvement. An extensive liver resection plus an impromptu HIPEC procedure sounds daunting. The second approach - MRI of peritoneum and laparoscopic exam - sounds safer. But I know how you feel. It's hard to give up a sure thing (liver resection and HIPEC) if the second approach means no HAI pump.

Could you have the MRI/laparoscopic and then make your decision? If they see peri-mets, you could go back to the first surgeon and see if they'll still do the resection + HIPEC. The pump would be out of the running then, I guess. (Although I know patients at MSK who have peri-mets and the HAI pump.) But you would at least know what you were dealing with. If they didn't see any peri-mets, then both options would be wide open for you.

Hope this helps!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

cartech78
Posts: 37
Joined: Thu Oct 25, 2018 6:22 pm

Re: I got second opinions- HAI pump, HIPEC, and now decisions

Postby cartech78 » Thu Nov 08, 2018 9:15 pm

I would ask to see how far Chemo can take you. Can it get you to the point both surgeons agree you are resectable.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.

Spazzyjanet
Posts: 47
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: I got second opinions- HAI pump, HIPEC, and now decisions

Postby Spazzyjanet » Fri Nov 09, 2018 6:20 am

First of all, thank you so much for giving me some of your thoughts.

-I called to schedule another appointment with my local surgeon on Monday to get a better understanding of his approach and his degree of confidence in it's success. Has he done this procedure before? And what was the outcome?

-The continued concern over peritoneal involvement keeps me up at night. I can't see a down-side to going through with tests prior to surgery other than well- more tests. Most likely no matter which I do I will probably go up and at least do the first one, which would be able to show or rule out extensive involvement. They gave me a paper that said it would involve a "water enema." Sigh.

-Both surgeons think that my liver is at least partially resectable. Despite the number of mets, the sizes are small so the total metastasis doesn't qualify as "extensive" per se. My largest met is 2 cm and is on the edge/lining. The problem is that I have several other smaller (small enough that no measurements were given) mets that are scattered throughout. I believe that the Dr. at the James is looking to put the pump in as a means of making those disappear and hopefully disappear and prevent them from coming back. I believe that the local surgeon wants to do some more extensive resectioning and then go in and ablate the smaller spots. He even had me take an MRI just of the liver so that if they are no longer visible after chemo he could still ablate where they had been previously seen.

-IF it is true that surgeon #1's approach has previously been done with success, I can't lie- it's appealing; if for no other reason than I could move forward without another initially painful and occasionally intrusive implant under my skin reminding me every day that I have cancer.

But I don't want to die either. I'm going to give him one more chance to explain how or why his approach is better long-term. If he backs off in his confidence or can't show me a success rate, I'm heading back to Columbus and getting an HAI.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.


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