Now the doc says biopsy first

Laura23

Today the surgeon called and said he would like to do a biopsy on the lymph node that showed up on the scan. He wants to do it next week with the possibility that he could remove the node. If the node comes back positive, they will postpone surgery and do more radiation. If it comes back negative, they will go forward with surgery as expected. Luis wants to just have the MIE, which is scheduled for August 30th right now. He is afraid that if the node comes back positive, it will be an excuse not to do the surgery at all.

Any info on what would be best? I know that there is a time window we need to be aware of but not sure exactly how long that is. Also, is more radiation really the best or would chemo after surgery be better? How much would the radiation delay the surgery by?

Thanks.

Laura
Wife to Luis
Dx 4/11/2011 T3N1M0

NikiMo

Maybe a second surgical opinion?
I don't know the answer to any of your questions, but maybe getting a second surgical consult would be helpful. I believe I recall that you are in the Philly area, and I also think I remember that you met with a few different docs at PENN and Jefferson. Maybe just a call to their office to get an opinion? I am sorry there isn't a clear path for you right now.

Niki

jthomas233

Check with your oncologist
I agree with niki... I would also call your oncologist...they are generally the folks who determine the course of non surgical treatment...are you working with Dr Scott at fox chase?

unclaw2002

Laura,
You might want to
Laura,

You might want to check with UPMC in Pittsburgh --- it is only about 5 hours from Philly and certainly worth the drive. The doctors there are very willing to give you a second opinion. Let me know if you have any questions. I live in Delaware so I am not far away either.

Best,
Cindy

Laura23

unclaw2002 said:

Laura,
You might want to
Laura,

You might want to check with UPMC in Pittsburgh --- it is only about 5 hours from Philly and certainly worth the drive. The doctors there are very willing to give you a second opinion. Let me know if you have any questions. I live in Delaware so I am not far away either.

Best,
Cindy

Second opinion
Yes, we are seeing Dr. Scott at Fox Chase and have been happy with him so far. He apparently consulted with the radiation oncologist and some GI docs who suggested this course. He was originally going to take the node out during the MIE. We will be making some calls tomorrow to get further answers.

I checked our insurance a while back to see if they cover UPMC. Unfortunately it is out of our network.

Thanks for all your support. I will keep you updated.

Laura

paul61

Time for a second opinion or a more complete explanation
Laura,

I agree with the other posts. I would consider a second opinion; at least from your oncologist, but maybe from University of Pittsburg. I assume your surgeon wants to biopsy the suspicious node because if it is positive for EC cells; even if it is removed as part of the MIE, that would mean post surgery chemo.

Chemo and radiation are always easier to tolerate prior to surgery when you have an intact digestive system. Having chemo after surgery when you are trying to recover from the physical trauma of surgery with a modified digestive system is much more difficult.

I think at a minimum your surgeon owes you a more extensive explanation of why he wants to biopsy the node prior to surgery and what that means in terms of the surgical schedule and any potential complications that may entail.

I would call the surgeons office and suggest I would like the following questions answered:

1. What is the rationale for doing the biopsy on the suspected node?
2. How does that affect the surgical time line if it is positive?
3. Who defines the treatment plan if it is positive?
4. What is the optimal surgical window?
5. If the node is negative does that affect the surgical time line?

You should not have to spend a week guessing at the answers to these questions.

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
6/21/2010 CT Scan NED
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!

NikiMo

Laura23 said:

Second opinion
Yes, we are seeing Dr. Scott at Fox Chase and have been happy with him so far. He apparently consulted with the radiation oncologist and some GI docs who suggested this course. He was originally going to take the node out during the MIE. We will be making some calls tomorrow to get further answers.

I checked our insurance a while back to see if they cover UPMC. Unfortunately it is out of our network.

Thanks for all your support. I will keep you updated.

Laura

Other excellent hospitals in our area...
Hey Laura,

If you don't get the answers you are looking for from Dr. Scott (side note here, I spoke with UPMC they are in my network so we were going to get a consult, I mentioned Dr. Scott and they said he was an excellent doctor as well). If UPMC is out there are hospitals in the area that are equally as good. I have the number for the cheif of thoracic surgery at John Hopkins if you want that, he does not do MIE but he is an expert and knows Dr. Luketich well. I get the sense that the top docs associated with EC know of each other. Also don't rule out Memorial Sloane Kettering if you need answers they were very helpfull when I was first calling around to the different hospitals. I am sure Dr. Scott will be able to better explain or we also liked his nurse practitioner she took more time with us when we had our visit with Dr. Scott. Just know you have other options if you aren't able to get the answers. But, I also agree with Jeff, get your oncologist on the phone...they are at Fox too correct? Our oncologist at PENN is wonderful if you want to get a fifth opinion on this, I'll give you the number

Please keep us in the loop, we are all here for you.

Niki

Laura23

paul61 said:

Time for a second opinion or a more complete explanation
Laura,

I agree with the other posts. I would consider a second opinion; at least from your oncologist, but maybe from University of Pittsburg. I assume your surgeon wants to biopsy the suspicious node because if it is positive for EC cells; even if it is removed as part of the MIE, that would mean post surgery chemo.

Chemo and radiation are always easier to tolerate prior to surgery when you have an intact digestive system. Having chemo after surgery when you are trying to recover from the physical trauma of surgery with a modified digestive system is much more difficult.

I think at a minimum your surgeon owes you a more extensive explanation of why he wants to biopsy the node prior to surgery and what that means in terms of the surgical schedule and any potential complications that may entail.

I would call the surgeons office and suggest I would like the following questions answered:

1. What is the rationale for doing the biopsy on the suspected node?
2. How does that affect the surgical time line if it is positive?
3. Who defines the treatment plan if it is positive?
4. What is the optimal surgical window?
5. If the node is negative does that affect the surgical time line?

You should not have to spend a week guessing at the answers to these questions.

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
6/21/2010 CT Scan NED
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!

Thank you all for your
Thank you all for your support and encouragement.

We called and spoke to a couple of different doctors and it makes sense now. The lymph node in question is in Luis' upper right chest, near his neck. If they do the surgery first, they will pull the already radiated tissues up into the chest. This would then be too close to the questionable lymph node to do more radiation.

By doing the biopsy first, if the node comes back positive, they can administer more radiation without worrying about giving too much to the area that already received radiation. He would also probably get more chemo.

So, pray that this node is just inflammation!

Laura
Wife to Luis
Dx 4/11/2011 T3N1M0

jthomas233

Laura23 said:

Thank you all for your
Thank you all for your support and encouragement.

We called and spoke to a couple of different doctors and it makes sense now. The lymph node in question is in Luis' upper right chest, near his neck. If they do the surgery first, they will pull the already radiated tissues up into the chest. This would then be too close to the questionable lymph node to do more radiation.

By doing the biopsy first, if the node comes back positive, they can administer more radiation without worrying about giving too much to the area that already received radiation. He would also probably get more chemo.

So, pray that this node is just inflammation!

Laura
Wife to Luis
Dx 4/11/2011 T3N1M0

Glad you got a good answer!
Laura and Luis-

I'm very happy you got a good answer to your question.

I had a swollen lymph node appear right near my breastbone and completely freaked out. I called my oncologist and he said that it was probably inflamation since the node was just within the radiation field. After a week, the node disappeared. I am praying the same is true for you and that your treatment continues on schedule.

My CT scan is Monday, PET is Tuesday, and I have a meeting with Donna Edmonsen/Surgical Consult at Fox Chase on Thursday. We may bump into each other in the hallways...

Jeff
DX 5/9
T3,N0,M0

Laura23

jthomas233 said:

Glad you got a good answer!
Laura and Luis-

I'm very happy you got a good answer to your question.

I had a swollen lymph node appear right near my breastbone and completely freaked out. I called my oncologist and he said that it was probably inflamation since the node was just within the radiation field. After a week, the node disappeared. I am praying the same is true for you and that your treatment continues on schedule.

My CT scan is Monday, PET is Tuesday, and I have a meeting with Donna Edmonsen/Surgical Consult at Fox Chase on Thursday. We may bump into each other in the hallways...

Jeff
DX 5/9
T3,N0,M0

Stop by
Stop by to see us and let us know your results! We will definitely be praying and hoping for good results!

Luis' biopsy was moved to Wednesday but he will be there for 2-3 days because of needing a chest tube. I'm sure we will be on the second floor of the hospital. Ask for Luis Jahn's room.

Try to have a good weekend and not worry too much.

Laura
Wife to Luis
Dx 4/11/2011 T3N1M0

NikiMo

Laura23 said:

Thank you all for your
Thank you all for your support and encouragement.

We called and spoke to a couple of different doctors and it makes sense now. The lymph node in question is in Luis' upper right chest, near his neck. If they do the surgery first, they will pull the already radiated tissues up into the chest. This would then be too close to the questionable lymph node to do more radiation.

By doing the biopsy first, if the node comes back positive, they can administer more radiation without worrying about giving too much to the area that already received radiation. He would also probably get more chemo.

So, pray that this node is just inflammation!

Laura
Wife to Luis
Dx 4/11/2011 T3N1M0

That makes sense
Hi Laura,

Glad to hear you got the answers you needed, and it makes complete sense. I am praying for you both that the node is just irritated, sounds like you have a great medical team behind you either way.

Niki