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Need Post-Op chemo help and advice!

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

Hello one and all! I'm a relatively new member and have been quietly observing since my fiancé Bill’s diagnosis of T3N1M0 adenocarcinoma in early June. You guys have a wealth of knowledge and have been an extreme source of inspiration to me! Right now I need help with centers that do post-op chemo.

We live in the Kansas City area. Bill had a liver transplant at the University of Indiana in Indianapolis (IUMed) in August 2008. We’ve continued to go there for his follow up, and he has done BEAUTIFULLY! However, when we were there at the end of May, he was scoped and they found a 7 cm tumor at the esophageal-gastro junction.

Long story short – Bill did post-op chemo and radiation in Indy so they could follow him because of the liver involvement. Since the anti-rejection meds he takes for his transplant can be hard on the kidneys, his chemo was altered a little bit to Taxol and Carbo – 5 days a week for about six weeks. He did really well, and the doctors said “much better than most”.

He was not a candidate for MIE because the surgeon wanted to be able to physically see his liver as he did the surgery as not to cause harm. His surgeon does between 100-120 esophagogastrectomies a year, both the IL method and MIE, so we felt comfortable with our choice. Bill had the Ivor Lewis on August 29th and has progressed nicely, was in the hospital for a total of about 14 days. However, the post-op pathology indicated there were 5/22 nodes positive for cancer, and we also learned post-surgery that Bill’s tumor was HER-2+ (3+). (Even though they determined this from his initial diagnosis.)

We are back in Indy today and just left his one month post-op check up. From all I’ve ready here, I felt like post-op chemo was the norm when there are positive nodes. However, his oncologist at IUMed said there is no evidence that supports post-op chemo even though I said I knew of other centers that are doing it. She replied that she didn’t know how it was being paid for (by insurance), because it wasn’t the standard of care! This contradicts everything I’ve read here.

Apparently they just want to wait to see if it will come back, which I feel sure it will, especially without post-op chemo. She didn’t say that this decision not to offer chemo had anything to do with the HER-2+ or the liver. In fact, she said the liver transplant did not end up being an issue with his surgery and recovery, and she also said she was more concerned about recurrence because of the number of nodes and not the HER-2+. She said they just plain old don’t do it.

So, here we are, six weeks out and the post op chemo window will be closing soon. Today I’ve been in touch with two specialists in our KC area; one who has created/written a lot of the protocol in EC chemo and radiation, and another from the University of Kansas Medical Center (KUMed). I don’t know if either will recommend post-op chemo, but surely there is some center relatively close that will.

We have no problem with jumping from center to center if they’ll offer the most aggressive treatment. For what it’s worth – Mayo Clinic gave Bill two years to live in 2007 and told us flat out there was no center in the US that would transplant him. I couldn’t buy that. I was lucky enough to meet someone online that got us to IUMed and he had a new liver in five weeks after being put on the list. I have nothing against Mayo at all, and I know that just because a center is aggressive in one area does not mean they are in another. While IUMed KICKS BUTT in transplantation, I don’t feel like their GI Surgical Oncology is as aggressive.

Your thoughts, please? We’d like to stay in Kansas City for treatments because Bill is an only child with an elderly mother he cares for. We were gone for four months with the transplant and all summer with this latest chemo, radiation and surgery in Indy, and we need to get back to work! Any tidbits of advice one could offer would be most appreciated!
Kim

NikiMo's picture
NikiMo
Posts: 346
Joined: Jul 2011

Hi Kim,

My husband had his esophagectomy on 9/6, he had a clean pathology report and he is getting ready to start one last round of chemo on the 18th. You read it right, he had a clean pathology and we were still offered post-op chemo. In fact our oncologist told us on day 1, prepare yourself for chemo after surgery since I am writing the orders for you either way. You are correct there are no papers that can prove whether post-op chemo is helpful in EC. BUT, lets be realistic how much research even goes into EC to begin with! Our oncologist is at the University of Pennsylvania. He had his surgery at John Hopkins, the surgeon who read the pathology report to us said "call your oncologist and tell him I am faxing the report and I suggest follow up chemo." So that is two major NCI designated Cancer Centers on the east coast suggesting follow up chemo for someone with a clean pathology report! I would insist on chemo if I were you, it sounds like your fiance is on board with this, because ultimately it is his decision. Jeff just feels like he has come so far, he isn't stopping now. He wants to know that he has done everything possible to beat this beast. Hoping and praying that chemo the second time around won't be too terrible. I know there are others on here that have gone through post-op chemo, hopefully they will chime in.

Again our centers are University of Pennsylvania in Philadelphia, and John Hopkins in Baltimore. Best of luck,

Niki
Wife to Jeff T2N1M0
dx 5/24/11
IL 9/6/11

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

Niki - I knew I wasn't crazy! Although I don't think KUMed is an NCI designated center yet, they are working really hard to be. IUMed, ironically, is one...We may be going back to Mayo just to get something started. Bill tolerated the pre-op treatments and the chemo pretty well and he really isn't resistant to doing it again, just leaving home another for another extended period of time.

There is also an oncologist in town whose specialty is gastrointestinal cancers and to whom a friend of ours went for pre-op chemo before surgery at M.D. Anderson in 2008. He is listed as being in the top 1% in his specialty by US News and World Report. Can I take stock in that? I've gotten Bill an appointment with him next week, and am working on someone at KUMed.

Best of luck to you and Jeff as you start chemo next week! I know you'll give us status reports! Again, thank you so much!

paul61's picture
paul61
Posts: 1115
Joined: Apr 2010

Kim,

I had to read your post twice to insure I was reading it correctly. I am amazed that your oncologist would say that post-operative chemotherapy is not "the standard or care" in the instance that they find positive lymph nodes in the surgical pathology.

I had one positive node of 21 nodes removed. I can certainly tell you that my surgeon and oncologist recommended that I have chemotherapy after surgery. The only thing that they disagreed about was how much. My surgeon thought four rounds would be enough, but my oncologist recommended six rounds. I did six.

From the almost two years I have been a part of this forum, I can tell you that post operative chemotherapy is the norm when positive nodes are identified in post surgical pathology.

I will be the first to day that post operative chemotherapy is a challenge but given the choice I would do it all over again. There may be no "documented proof" that it is effective, but if I do get a recurrence, I want to be able to tell myself I did everything possible to try to avoid it.

I had my surgery at Medical University of South Carolina and did my post operative chemotherapy at University Hospital in Augusta Georgia.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

Hi Kim -
My husband had THE at Mayo with positive nodes and at his six-week post-op check, the oncologist couldn't get him back into chemo fast enough. We were fortunate in that they were willing to work with our local oncology center so he could have chemo locally. I'm not sure how of if the liver transplant changes things and certainly they evaluate things on a case-by-case basis but wanted to share our experience with post op chemo at Mayo.
Mary

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

We are really familiar with Mayo Clinic. Bill had been treated for his primary liver cancer there until they said they could do no more and we went to IUMed for his transplant. We are six hours away from Rochester. It was a wonderful facility but they were just too conservative to do "salvage transplants" at that time. In fairness to the center, I feel quite certain that they probably do them now as it was a newer concept in the States when Bill had his. We'd still be going there is so as it is closer!

That said, could you please share your oncologist's name? Bill is six weeks out and we need to get going. Mayo also has a great hepatologist there that we loved and who could confer with oncology there. It would be great to be able to have chemo in KC!

mruble's picture
mruble
Posts: 179
Joined: Jun 2011

Kim,
It was Joseph Ruben. We actually only saw him that one time. At the time of diagnosis, we didn't want to wait the two weeks it would have taken to see an oncologist at Mayo so told them we would treat at home. Even at that point we were encouraged to have our local oncologist consult with them. While I'm sure they would prefer to have everyone treated there, they also understand the importance of maintaining a life. I'm sure my husband would not have done as well had he stayed in Rochester.
Good luck, Kim. My prayers are with you!
Mary

Callaloo's picture
Callaloo
Posts: 147
Joined: Nov 2010

I'm looking at the chart in my copy of the National Comprehensive Cancer Guidelines (the treatment guidelines followed by most major cancer centers, and post op with positive nodes where the originial tumor is adenocarcinoma (and not squamous cell), calls for post op chemoradiation, and the specific kinds are also outlined.

So it appears to me that the standard of care in your case is for post op chemo and possibly radiation.

You can get your own copy of the 2011 guidelines at NCCN.org, or if you have trouble doing that, I'll email you a copy.

My doctors don't rely on it exclusively, but they take the guidelines seriously.

Best of luck to you and your husband.

Lu

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

The kindness of others never ceases to amaze me!. Mary - thank you for your oncologist's name. Lu - I will download the guidelines as soon as I back to KC tomorrow.

We've already made an appointment with another oncologist for next week. After a liver check here in Indy today we will be headed home in the morning, all records and films in hand.

You've given us HOPE...we both had the best night's sleep last night that we've had all summer!

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

The kindness of others never ceases to amaze me!.Mary - thank you for your oncologist's name. Lu - I will download the guidelines as soon as I back to KC tomorrow.

We've already made an appointment with another oncologist for next week. After a liver check here in Indy today we will be headed home in the morning, all records and films in hand.

You've given us HOPE...we both had the best night's sleep last night that we've had all summer!

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

The kindness of others never ceases to amaze me!.Mary - thank you for your oncologist's name. Lu - I will download the guidelines as soon as I back to KC tomorrow.

We've already made an appointment with another oncologist for next week. After a liver check here in Indy today we will be headed home in the morning, all records and films in hand.

You've given us HOPE...we both had the best night's sleep last night that we've had all summer!

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

The kindness of others never ceases to amaze me!.Mary - thank you for your oncologist's name. Lu - I will download the guidelines as soon as I back to KC tomorrow.

We've already made an appointment with another oncologist for next week. After a liver check here in Indy today we will be headed home in the morning, all records and films in hand.

You've given us HOPE...we both had the best night's sleep last night that we've had all summer!

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

What a newbie - have tried to delete the additional comments. THANKS, LU! I've downloaded the NCCN Guidelines for EC this morning!

Gatoraid's picture
Gatoraid
Posts: 71
Joined: Aug 2010

I was found to have 2 positive nodes after surgery, but they had identified them on x-rays before the surgery si they considered me to be clean. I was told that I did not need post-op chemo, but if they would have found any nodes that weren't previously identified, it was the standard approach.

In your case, get the post op chemo. What you were told by the oncologist makes no sense to me. I was treated at Mass General in Boston and in my mind they walk on water with their cancer program. Post op chemo is definitely warranted.

Wishing you the best,

Jim (aka gatoraid)

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

My treatment plan always called for pre and post op chemo. My oncologist said it was the best approach and from what I've read, I agree. I had three out of 31 nodes come back positive so there was absolutely no question. The very fact that cancer cells were found in the nodes mean that the cancer is on the move. The post op chemo offers the very best chance to destroy any remaining cancer cells that weren't detected on a PET/CT but yet are hiding out waiting for a chance to grow.

Time is of the essence. My oncologist said there was a definite window of opportunity when chemo is most effective post-op. I started mine one month after surgery almost to the day. I was still weak but I didn't want to wait.

Good luck!

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

I've had Bill's medical records sent to two KC oncologists, one at the University of Kansas and the other whom trained at Mayo and has writtten many papers on post op chemo (and radiation) after esophagectomy. We have out first appointment Wednesday. I've gotten copies of all the records and film to hand carry as well. I do know time timing is critical!

Jimbo - where were you treated?

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

My oncologist was Dr. Sehgal at the Edwards Comprehensive Cancer Center in Huntington, WV and my surgeon was Dr. Luketich at the University of Pittsburgh Medical Center in Pittsburgh, PA. I highly recommend both doctors and facilities. I was treated like royalty at both. Dr. Sehgal was incredibly aggressive and talented and prepared me for surgery very well. Dr. Luketich and his team performed the Minimally Invasive Esophagectomy and recovery has been much easier than I expected. Even with post-op chemo. I am so glad to hear that you are moving forward on getting a second opinion. Good Luck!

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

If so, I'm from Charleston. I also lived in Pittsburgh once upon a time and my kids were both born there. Best city in the universe!

The good thing about having gone through so much with Bill's liver transplant is I've now learned how to research what other centers are doing and not to take "no" for an answer!

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

I actually live in Ashland, KY but receive my treatments in Huntington, WV which is right across the state line. They've got a very nice cancer center up there. Been to Charleston many times though. I spent three weeks in Pittsburgh during July for my surgery. I actually will be going back to Pittsburgh in about three weeks for a follow-up. Small world isn't it?

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