Newbie here... questions about liver resection...UPDATE!

[CM35]

Hi! I have been lurking off and on, and finally decided to join in...

I am a 35 year old female, diagnosed with stage 4 colon cancer in April 2013, with liver and ovarian mets. When I was diagnosed, my colon tumor was non-obstructive, and my liver was in such bad shape, that I went straight to chemo. I did 12 rounds of Folfox/Avastin, finished that up last month, and now I am on "maintenance" Xeloda/Avastin, along with Celebrex. When I was diagnosed, I was pretty much told based on the extent of my liver mets, I would never be a candidate for resection, and the best I could hope for was a good enough response from chemo to buy a little more time. This was according to both my local oncologist and second opinion at Mayo in Rochester. However, never say never... After 6 months of chemo, I had a restaging PET w/CT, and my response was so good that I am now 'resectable.' The tentative plan is that I will do the Xeloda combo for a few months, rescan, and if all is stable, proceed to surgery. This all according to my local oncologist, I am yet to get 2nd opinion after the restaging PET. I have asked my local doc about where I should have surgery, and I wasn't real surprised when he said I could have it here (I almost feel like they have to say that - stay in their system) or I could go to Mayo if I want (which is about 4 hours from where I live.) He said I would likely need 2 surgeries, one to go in for the colon and ovarian mass, the second to go after the liver. I agree with the treatment this far - we know my cancer is highly aggressive. I was misdiagnosed in January with a gallbladder attack and "hemangiomas" on my liver (3.5 months before I was correctly diagnosed) and my liver tumors pretty much went crazy in that short amount of time - the main tumor went from about 5 cm to 11 cm between January and April.

Otherwise, my health is generally very good. I am a healthy weight, I exercise daily, eat pretty healthy - I can keep up with all of my daily demands without a crew of "helpers." I just feel like we are in so over our heads with all the cancer crap! It kind of came out of nowhere - I have zero family history of GI cancers, I feel like we are wandering around in the dark with how to deal with all of this.

Anyway, I guess I am looking for opinions about second opinions. I am going to start pursuing them after the holidays - I want to give my kids a great Christmas, and then get back to the business of killing cancer. After my diagnosis, I chose Mayo for my 2nd opinion basically due to geographic convenience. However, after getting used to the idea of the fact I have cancer, and doing some research, I am not so sure that would be where I would want to go now... It seems like a better bet would be MSK in New York. I am just wanting to hear about experiences with major cancer centers vs. local systems. Also I would love to hear about your journeys to resection and what treatments you have received. Anyway, any feedback would be greatly appreciated!

Thanks!!!!

****Updated at end*****

[Voxx66]

From my research -if I could go anywhere for liver resection it would be MD Anderson. But for convenience's sake, I will likely have mine done (if I can get to that point) at Siteman in STL.

[CM35]

From my research -if I could go anywhere for liver resection it would be MD Anderson. But for convenience's sake, I will likely have mine done (if I can get to that point) at Siteman in STL.

I hope you get to that point, too! It's a good feeling, but scary at the same time... The only surgeries I have had are C-sections when I had my kids, and they are pretty routine. Thinking about liver surgery pretty much scares the crap out of me.

Yes, everything I have read about MDA is positive as well. I was thinking MSK mostly because I would like to get in their system anyway - I am intrigued by all I have been reading about the HAI pump, and it sounds like the oncologist there who does the HAI stuff pretty much is the gold standard as far as that treatment goes... While I am trying to stay positive about my cancer behaving itself and getting my resection, I don't trust it AT ALL, so I kind of am thinking back-up plans. What made you prefer MD Anderson over other places?

Ultimately, it WOULD be most convenient to have my surgeries done at home... logistically. We wouldn't have to find someone to stay home with our children for an extended length of time, and I really don't want to be away from my kids. Not to mention, the expense involved would be much less. However, I want the best chance for a good outcome, so whatever I need to do to get that, I want to do.

[juliej]

My situation was similar to yours. I was diagnosed as a Stage IV with several liver mets and two lung mets (one at the bottom of each lung). I was told by my local cancer center that I was inoperable and to expect 24 months at best if I responded well to chemo. I responded very well to chemo, but 14 months later they hadn't changed their mind about surgery so I sought a second opinion at MSK. I saw Dr. Kemeny, who consulted with her team and then told me I was a good candidate for surgery! In 2011 I had a surgery to remove my primary tumor + a liver resection + an HAI pump implanted. Three months later I had a double-lung surgery + an ileostomy reversal. I'm at 3 years 4 months now and am currently NED. Like you, my cancer diagnosis came out of nowhere. There's no history of cancer in my family and I eat healthy and exercise frequently. All the docs reassured me that I couldn't have CRC because I was too young and too healthy. The day I heard the diagnosis was the worst day of my life. It's hard to wrap your mind around what they're saying. Emotionally, it beats you up. Then the chemo beats you up. My advice is to stay strong and stay aggressive. MSK saved my life. I'm so grateful to all my wonderful doctors there for not giving up on me like my local place did.

Hope this helps. And PM me if you have any questions!
Julie

[mom_2_3]

Cmrf35,

Like Julie above I was also treated at MSK. I have been in remission since Feb 2009 when I had 40% of my liver removed along with my diseased colon section. At the same time I had the HAI pump implanted to serve as an adjuvant treatment methodology and I am so glad that I did. The HAI pump can decrease the chances of recurrence in the liver. I have been off all treatment since November 2009. I am sure that there are experts in liver resections at Mayo if you decide to go that route. Whatever you do, I would ensure that the surgeon is an hepatobiliary surgeon and not a general oncological surgeon. I know that CPTMAC (a longtime member here) had her liver resection and HAI pump implanted at Univ Minn at Rochester so perhaps that is also an option. CPTMAC is 10 years in remission from her liver mets.

Please PM through the board email if you would like any more information. There is a large cohort of Dr. Kemeny's patients on here and while most would agree that her bedside manner is not all warm and fuzzy, everyone would agree that she is a brilliant scientist and amazing oncologist. She only treats colon cancer.

Best wishes,
Amy

[radnyc]

MSK, great surgeons, plus, with their HAI therapy expertise a great opportunity to take care of your liver.

[debzak]

I was apparently stage III rectal cancer in march of 2012. I had chemo, radiation, surgery and some oral chemo for good luck. 7 months later I found out that my cancer spread to my liver. My original treatment was at my local cancer center. We had gone to MSK for a second surgery opinion at the begining and again before surgery. The opinions, at that time were the same. I showed MSK my local hospital's scans.

Dr. Kemeny seems to claim that their scans are better. I am currently one of her patients and have the HAI (since june). At the current time the liver surgeon says I am not a candidate for liver rescection because I have developed more tumors (lungs, lymph node, bone...). But he will look at my January scan and we will talk again.

Sometimes I wish I had gone to MSK from the begining, but I can't question the decisions I made. I love my original colorectal surgeon and I know others who have used him. He is wonderful and is always there if I need to ask him something. In a way things were easier being closer to home, but at some point it became clear that no matter what the inconvience wouild be to my current life, my future depended upon me changing doctors and centers.

You need to gather all of your info and then make a decision. You are also likely to get different opinions, which was something I didn't want to deal with. (if one doc said to A and the other said B). Sloan tends to have their opinions about things and does stuff other centers do not.

Good luck on this journey, we are all here for support.

Debbi

[hart2hart]

Hi -

My Pete just had liver resection and Hai Implanted on October 25th. I concur with deb, juliej, ray and
mymom that MSKCC is the place to go for liver Mets. They are absolutely brilliant and they do
the most liver surgeries (over 300+ per year) than any other hospital. Seems to me that they must be
doing something right if Dr. K has More Stage IV patients that are in long-term remission.

We learned of the Hai through this wonderful club. What does it hurt to seek out-an-opinion
from Dr. K her team and the Ace liver Surgeons at MSK.

We switched our local Onc recently because of reluctance to work with the pump. Our local
doc has one PT who is 13 plus years out from Liver Recsetion/Hai Pump from Dr. Kemeny.
One other item --- They call you back right away, are very friendly and professional (dr. K's staff)
and make you feel just how important you are!

Give Gabrielle a call at MSKCC --- send your stuff and at least get Dr. K's input on your treatment.



Julie H
Stamford, CT
Hubby (61) VLRC Stage 3 - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Chemo and Success reversal - 5/12 - 4/13
Clean Colonospcpy - 8/13
Liver Met - 10/13
Resection/Hai/Folfiri - 10/13 to current

[dianne052506]

I guess because of logistics, there seems to be a far greater contingent of MSKCC patients, than of MDA, so I'll speak up for MDA.
Seven and a half years ago, I was told my two other surgeons (one the general surgeon that did my colon resection, and one that specializes in oncology) that my liver was unresectable. They weren't saying "maybe, someday." They were patting me on the head and basically telling me to go home and die. Flew to MDA for another opinion, just so I could say I tried everything. The surgeon there looked at my scans and put me on his calendar for 3 months out. They told me to go ahead with 4 rounds of FOLFOX before the surgery, first, because I would need chemo again after surgery for "mop-up" and they wanted to see how I responded while there was still something big enough to measure; and second, he planned to remove about 80% of my liver, and anything that got those tumors to shrink would make the surgery that much easier.
The 2 local surgeons had said nothing about my ovaries showing up on the scans. Either the scans at MDA were that much better, or the radiologists were that much better. They told me they wanted to remove the one ovary that was enlarged, and based on the mid-surgery path report, they might go ahead and do a total hysterectomy. So, liver surgeon and GYN surgeon, but all that was done in one surgery. I know there are people who have also had colon resections and the same time as liver resections, but if you were interested in pursuing that option, then I would certainly have it done at a major cancer center where they can have all 3 surgical teams available.
Because you say your liver was in such "bad shape" to begin with, I would certainly want a surgeon who does nothing but liver surgery, day in and day out, not someone who does a couple of liver resections a month. That's another argument in favor of a major cancer center. You're a mom, and I bet if it were your child involved, you would already be at a major center. Because you're their mom, don't forget that you are that important, too.
I don't know Mayo, and obviously, Dr. K, and the HAI pump get a lot of press here, but the big thing is a finding a surgeon who gives you the confidence to put your liver and your live in his/her hands. You may find this doc at Mayo, MSKCC, or at MDA.
I did have a question about your story, that perhaps others can chime in on also. Is it typical when you've worked so hard to get to "resectability," to then delay surgery and do maintenance chemo for a few months? It seems I've only read stories about people getting the news and then heading off to surgery rather quickly. At a major center, a board would be making the decision about when to send you to surgery. Are both a surgeon and an oncologist involved in the decision now?
Best wishes to you,
Dianne

[mom_2_3]

Another long-term survivor, Colondar cover girl Erika has been in remission since 2001 and one of her treatments was an HAI pump. Check out http://www.colonclub.com/crazy-projects ... mber-2005/.

[CM35]

Wow, I appreciate all the feedback...

Dianne - regarding why I am on Xeloda/Avastin instead of going straight to surgery - according to my oncologist, we are taking this route to see how my cancer behaves on a lower dose of treatment. Primarily because we know for certain that it is aggressive left unchecked, thanks to my initial misdiagnosis. If I have a lot of progression on maintenance chemo, there is little chance I could do the 4-6 weeks off chemo before and after surgery, and be any better off than I am now.
And just speculating, because I have had time to "think" since my last appointment, but I am suspecting he wants to wait so we can use oxaliplatin again for "mop up." (Since we know I respond well to it.)
I am also interested in hearing if anyone else has had their treatment pursued this way (maintenance chemo before surgery), and been successful... I would also like to hear about any experiences with having both a colon resection and liver resection at the same time. In a perfect world, I would prefer to get it all taken care of at once. I don't know what they would do with my ovary - whether or not I would have a complete hysterectomy or just have the affected ovary removed. Neither my local doc nor the Mayo doc seemed too concerned about the ovarian met... I think mostly because my liver was such a disaster - innumerable mets throughout. Obviously, they weren't expecting the response I had to treatment.

Anyway, thank you for all the info... All this cancer "stuff" is so overwhelming... So many different approaches for treatment and trying to pick the right one is very stressful... All the feedback I can get is very appreciated!

[Rheaeliza]

Hi there,
I, like you, was told I would not be resectable upon diagnoses which for me was last December, 2012. We did 12 rounds of chemo, a break, then 3 more and my cancer shrunk more than anyone ever thought. I was getting treatment at Beth Israel in NYC and when my oncologist referred me for surgery, to my surprise, I was again surprised he didn't want me to stay in the Beth Israel hospital network.

That s becaue he wanted me to see a surgeon at Mt. Sinai who in his opinion is one of the best liver surgeons out there. Also, he does a proceedure called HIPEC which I didn't think would benefit me as I thought it was only for when you have a lot of visible peritioneal mets which i did not, but having omental caking, and spread to ovaries, well it means the cancer has been out there in your peritoneal cavity.

Months later, I have had HIPEC along with colon resection, hysterectomy, appendix removal, galbladder removal. THen two months later he did a very successful liver resection. At my last check in with him my pathology reports all came back clean and I am free of any visible cancer. No follow up chemo for me either. I did have to get a temp. ileostomy but the takedown on that is coming up soon.

Dr. Labow is his name and he is fantastic. Best most caring doctor I have ever met, not to mention, wonderful energy, and highly skilled. He is the head of surgical oncology at Mt. Sinai so you kow you are in good hands.

http://www.hipectreatment.com/resources ... binar.php/

Of course if you are going to treck down here, MSK is no shabby place to go either!!! Haha. I'm just very happy with the level of care I got from Dr. Labow and his team!

Best of luck and feel free to reach out if you have any questions!

Rhea

[CM35]

Well, I took the plunge and contacted MSK... I have made all the requests for my medical records to be forwarded to them... When I spoke with the person at MSK, he said that they would review my records and decide which doctor I would see. I did tell him I am going to them specifically to inquire about the HAI pump. Are there other doctors there that work with the HAI pump or just Dr. Kemeny? Also, for those of you who have the HAI pump, are any of you far away from NY, and able to have your pump filled at your local cancer center, and maybe just travel to NY on a quarterly basis or something? And has anyone had any problems getting their local oncologist on board with the HAI pump/willing to work with Dr. K? I have an appointment with my local doc in a little over a week, and am going to bring all this stuff up with him at that time.

Rhealiza - So, did you have the HIPEC procedure done? I guess I was unaware that ovarian mets indicated peritoneal involvement? What was your experience with HIPEC like? I have to admit that what I have read about the recovery kind of scares me...

Thanks in advance for all your input, you all are a wealth of knowledge!

[juliej]

Congratulations on taking the plunge! Since you have ovarian mets too, it's good you said you were contacting them specifically about the HAI pump. That should get your paper work seen by Dr. Kemeny. I live about as far from MSK as possible - on the west coast. Right now I travel to NYC on a quarterly basis for a CT scan and to have my pump refilled with glycerol. However, during treatment I rented an apartment in NYC and stayed there because the pump had to be filled with chemo (FUDR) every 4 weeks. The schedule is FUDR in the pump for 2 weeks (plus a systemic chemo), followed by saline in the pump for 2 weeks (plus another systemic chemo). Some patients fly in once a month, but it was simpler for me to just move there temporarily. Once treatment is finished, the pump only needs to be refilled every 6 weeks with glycerol. My local cancer center learned how to fill the pump and my onc is fine collaborating with Dr. K and taking directions from her. MSK has instructional videos and provides great support for filling the pump. Codman (the company who makes the pump) sometimes sends instructors directly to a local center to teach local staff how to empty and refill it too. The most important thing to know is that the FUDR must be put in at MSK. This is so Dr. K can look over your lab results and adjust the dosage as needed. Good luck! I think you made a smart decision!

[radnyc]

Dr. Kemeny is not the only one who does the HAI protocol, as far as I know the ALL do. Dr. Kemeny and MSK are the pioneers of this type of treatment, she is the expert on the pump, she supervises the whole group. She's a very busy oncologist as one can expect, so don't be discouraged if you don't get her to see you. Initially, I did not go there to see her specifically, I was assigned someone else, an experienced, competent Doctor. He recommended HAI and on occasion would consult with Dr. Kemeny if anything unusual comes up. You'll be in good hands I'm sure.