mlayton
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Porter, sorry to hear the news about diagnosis, but now that you have more information you can at least formulate a game plan.
My wife Lisa got a second opinion at Mayo (Rochester) shortly after her first visit at OHSU. You can definitely get a second opinion after you start chemotherapy, but some centers may want you to wait until after a few cycles are completed. We were very impressed with the Mayo system, the doctors, and the overall efficiency of the 3-day visit. Unfortunately, the Mayo team simply confirmed the opinion of the OHSU team that Lisa was inoperable and unlikely to ever be a candidate for surgery.
However, since that time, the OHSU team has shifted their opinion a bit and now they believe that Lisa may be a candidate for surgery in the future. Lisa’s condition is quite similar to yours — ICC with a large 15cm mass and several smaller masses. The only difference is that Lisa is stage 4A due to local and distant lymph node metastases. Dr. Billingsly is the liver surgeon at OHSU and he is one of the top surgeons on the west coast — he trained at Sloan Kettering. Dr. Billingsly reviewed my wife’s scans at the tumor board and he believes that resection is possible with a good initial chemo response.
We have also sought multiple other opinions from surgeons who essentially agree that resection could be possible in the future. Some surgeons will review your scans and will provide a remote consultation without actually having to visit them. Please let me know if you would like further information and I can provide some names and contact numbers.
The takeaway from my rambling is that second and third opinions are incredibly valuable. Just because you have been told that surgery is unlikely does not mean that you will not become a surgical candidate in the future. And like I stated previously, many of those who have been deemed permanently inoperable have had very good outcomes and live productive lives largely free of symptons.
Best of luck on your journey, and please let me know if I can help in any way.
Kind Regards,
-Matt
Porter,
For what it is worth, Lisa’s primary tumor is nearly as large as yours (15x12x13). The primary tumor has comprimised the portal vein and hepatic artery. She also has 3 smaller tumors and positive lymph nodes near the aorta. Despite the advanced stage, which I believe is somewhat similar to your case, we are very hopeful and optimistic. Lisa has completed two cycles of chemotherapy (gem/cis) and has tolerated it quite well so far. She will have her first post chemo scan in another two weeks.There are many cases of patients with similar size masses that begin as unresectable and become resectable after chemotherapy and other targeted treatments. We are very hopeful that resection will become an option in future. Even for non-resectable patients, many have had success at shrinking the tumors, managing symptoms, and preventing further growth for several years.
As for Dr. Vaccaro, I have heard many positive comments. I believe that you are in very good hands at OHSU.
I am sure you are still in shock after the diagnosis, and after almost two months the shock has still not worn off for us. Please rely on the folks on this board for support, it is an unbelievable resource. Don’t give up the hope, and please let me know if I can help in any way.
Warm Regards,
Matt
Porter,
My wife Lisa was diagnosed with unresectable, stage 4 ICC on May 30, 2013. We too have small children (ages 1 and 4), so I can definitely relate to the added anxiety and stress of battling this disease and raising young children.We also live in the Portland area — Lisa is being treated at OHSU as well. We are very happy with our care at OHSU and our oncologist, Dr. Lopez.
Many on this site stress the importance of second opinions and I definitely concur with this advice. We have obtained multiple opinions from some of top cancer centers in the country. So far, all of the experts have concurred with the initial treatment plan outlined by the team at OHSU.
Please let me know if you have any questions. I would be happy to share any information that I have regarding our journey as well as local resources that may be helpful for you.
Warm Regards,
Matt
Carl,
Great news! Thanks for sharing. Since my wife Lisa has a very similar diagnosis, we are extremely encouraged.Please keep us posted on your consultation with the team at MSK.
Kind Regards,
-Matt
Hi Sarah,
Sorry to hear of your father’s diagnosis.My wife Lisa was recently diagnosed with CC as well. We also consulted with the team at Mayo and learned that her cancer is currently unresectable — also due to portal vein involvement as well as some other factors.
My understanding from my research and from reading posts on this site is that some patients are initally unresectable and later become surgical candidates due to positive response to chemo and other treatment modalities. Perhaps surgery may be an option in the future?
Like others have stated, we have also learned the value of attaining multiple opinions. It seems that Mayo may be more conservative in terms of surgical options, as I have read about some patients who were told that surgery is not an option at Mayo and subsequently underwent successfull resections at some other centers including Memorial Sloan Kettering and MD Anderson to name a few.
I wish your father the best of luck with the port placement and with chemo treatments.
-Matt
Wow. Thanks so much to all of you for your kind words of support and encouragement as well as the very helpful tips and advice. It is reassuring to know that my wife Lisa is not alone in this fight. After a month of reading various posts to this board, it is nice to finally make personal connections.
I am amazed at the level of medical knowledge and sophistication that you all possess. My head is still spinning from my research into all of the various treatment options, facilities, doctors, etc. Reading about your personal experiences and knowledge that you have gained certainly has helped to make some sense of this very complex labyrinth.Jason – we have a lot in common. Thank you for sharing your knowledge and experiences. I was not aware that we could potentially purse the local and regional chemotherapy options concurrently. I will definitely discuss the DEBIRI protocol with our oncologist. I’m happy to hear that your wife Andrea seems to be responding to her initial treatments. I believe we both have the same hope of becoming a candidate for resection at some point in the future.
Carl – thank you for sharing your experiences thus far; our circumstances are quite similar as well. It is reassuring to hear that we did the right thing by starting chemotherapy right away rather than delay treatment. You stated that surgery is not an option for your wife Lynn. Would you mind providing further details? I will also be curious to hear about your experience at Memorial Sloan Kettering. Dr. Fong at Sloan is so far the only surgeon who believes that my wife is a candidate for resection (the official tally is 3 no’s, 1 yes, and 1 maybe).
Susie – it is great to hear about another CC survivor right in our hometown. We actually had an appointment with Dr. Vaccaro, but we chose to see Dr. Lopez at OHSU because he was able to see us a week sooner. My wife was diagnosed during the ASCO meeting and just about every GI oncologist in the country that we contacted was in Chicago and not able to see her right away. Do you know anything about Dr. Billingsley at OHSU? If Lisa becomes a candidate for a resection, he would be the one to perform the surgery.
Lisa – thanks so much for providing your contact information and agreeing to speak with my wife – also named Lisa. We visited your caringbridge site and were blown away by your amazing journey and your strength and determination. Lisa would like to reach out to you directly in the near future. Your story has become an inspiration.
Willow – you are an amazing advocate for your sister. She is very lucky to have you in her corner. Thank you for sharing your story. I am sure your sister can relate our difficulties in managing this disease while raising young children. It is comforting to know that there is also great hope for those who are not candidates for resection.
Marion – thanks for the tip regarding Dr. Schulick. I previously lived in Denver and would not mind getting back there for a consultation. As the biggest question mark for my wife is whether or not a resection is possible, I do not believe that you can have too many opinions from the top liver cancer surgeons.
