UPDATE: urgent help needed: Chem vs second surgery

seek@light

Hi all,

Happy holidays.

I am from China. I am asking for help for my mom, who is 61 now. She was diagnosed to have stage 4 rectal cancer with MET to liver (two tumors with size < 2 centimeters). She got surgery to cut off rectum and part of liver on 11/01/2011 and recovered very well. She finished two cycles of chem (FOLFOX) so far. The third one should start last Friday and now it is postponed to Monday (12/26) due to pending PET/CT SCAN result.

The main story is about the CEA. Her levels are presented below:
1) 189 on 11/01/2011 (the day of surgery)
2) 35.4 on 12/08/2011 (the first day for 2nd chem, about 40 days after surgery)
3) 19.2 on 12/22/2011 (about 52 days after surgery)



So her oncologist decided to hold her 3rd round of chem and ordered one PET/CT scan for her. And he proposed to get a second surgery for liver if the PET/CT scan showed new tumor there. The reason is that it would be difficult to have surgery if the tumor disappeared after chem. I have to make decision on Monday if that is the case. That is why I am seeking urgent help here.

I am really concerned about the proopsal for a few reasons:
1) I was thinking that it would be great if tumor can disappear after chem.
2) I am not sure whether my mom can tolerate a second surgery just about 2 months after the first one. If not, her quality of life will be much worse.
3) If we found tumor now and decide to have a surgery, I am not sure whether all tumors are cut-off this time. If CEA is still high or there is another small tumor later on, should we have another surgery?
4) I would like to know whether the chem does work for my mom. It might be too early since she only had two rounds of chem so far.



What I am asking can be summarized below:
1) What is the procedure do you have if you unfortunately had the same path?
2) As a pt, would you prefer to have a second surgery or continue to receive chem since it seems that chem works? (I am asking since my mom did not know much about her disease yet).
3) it would be great if you could direct me to some guidance on this issue or some forum to seek doctor's suggestions.

Sorry for the long post at this special day. I am so depressed since I already lost my dad to cancer. I know how tough cancer can be to patients and also their families. Hope all patients are getting much better soon.


Gary

Lovekitties

Dear Gary
So sorry about your mother's situation. While I have no experience with liver mets a couple of thoughts come to mind.

It sounds as if the doctor feels there is some reason to be concerned that mets have returned to the liver. Has the doctor said what is the reason for this concern? Was he expecting the CEA to be much lower or in the good range by now? It does seem that the CEA is dropping.

When necessary, I believe that surgery is best option over chemo, if it can be tolerated by the patient.

I hope that the scan results will show better news than expected.

Best wishes to you and your mother.

Marie who loves kitties

seek@light

Lovekitties said:

Dear Gary
So sorry about your mother's situation. While I have no experience with liver mets a couple of thoughts come to mind.

It sounds as if the doctor feels there is some reason to be concerned that mets have returned to the liver. Has the doctor said what is the reason for this concern? Was he expecting the CEA to be much lower or in the good range by now? It does seem that the CEA is dropping.

When necessary, I believe that surgery is best option over chemo, if it can be tolerated by the patient.

I hope that the scan results will show better news than expected.

Best wishes to you and your mother.

Marie who loves kitties

half life for CEA
Hi Marie,

THanks a lot for your reply. Those are very helpful for us to make final decision!

The only thing that indicates the mets could return to liver is the CEA readouts. Or there were some tumors somewhere in the body even before the first surgery and unfortunately those were not found due to the size. As you mentioned, it seems that the CEA is keeping lowering from the beginning. That gives me a lot of hope.

Our oncologist believed that the half life of CEA should be about 5 days, therefore, the CEA should be back to normal (0-5) after about 6 weeks at most after surgery, starting from 180->90->45->22.5->10->5. The first post I had in this board is about the CEA, and Amy kindly replied and mentioned that the half life of CEA reduction might be about 2 weeks based on her oncologist and her research. If that is the case, then my mom's readout as 19 for now is on the right path. However, my oncologist was more leaning to what his gut told him

Merry Christmas!

Gary

janderson1964

Surgery is definately the
Surgery is definately the best option. I just had my third liver surgery over the course of 6 years.

seek@light

janderson1964 said:

Surgery is definately the
Surgery is definately the best option. I just had my third liver surgery over the course of 6 years.

how long to recover from repeated liver surgery
Dear Janderson,

Thanks a lot for your reply. And your personal story is very encouraging.

Now I am leaning to agree with my mom's oncologist. If possible, would you share a little bit more about your experience on How long it took you to recover from the second and the third liver surgery? Was it signficant longer than the first one? I was a little bit concerned that 2 months might be too short between the first and the second surgery.

I saw that you are in treatment-free now. That is great! You really beat the cancer.

Best,

Gary

annalexandria

Hi Gary-
I'm sorry you're going through this with your mom, especially after losing your dad. I lost my sister to cancer, so I know how hard cancer is on a family. My personal experience leads me to definitely be in favor of surgery. Chemo didn't work for me, so I rely on surgery for survival. I've had 5 surgeries in the last two years and two of them were just a couple of months apart. Both were pretty major surgeries and I did fine. If your mom is relatively healthy, without additional complicating health factors, she'll probably do ok with the second surgery, and if her doctor recommends it, I think it's a good decision. From my reading, surgery is a major factor in long-term prognosis, even more so than chemo...being able to have it is a good thing! Wishing you and your mom the best-Ann

seek@light

annalexandria said:

Hi Gary-
I'm sorry you're going through this with your mom, especially after losing your dad. I lost my sister to cancer, so I know how hard cancer is on a family. My personal experience leads me to definitely be in favor of surgery. Chemo didn't work for me, so I rely on surgery for survival. I've had 5 surgeries in the last two years and two of them were just a couple of months apart. Both were pretty major surgeries and I did fine. If your mom is relatively healthy, without additional complicating health factors, she'll probably do ok with the second surgery, and if her doctor recommends it, I think it's a good decision. From my reading, surgery is a major factor in long-term prognosis, even more so than chemo...being able to have it is a good thing! Wishing you and your mom the best-Ann

Thanks
Hi Anna,

This is exactly the information I am looking for. My mom is relatively healthy and the doctor believed that she could tolerate another surgery. I hope so.

You have done a great job so far. You will beat your rare cancer for sure!

Happy holiday.

Gary

janderson1964

seek@light said:

how long to recover from repeated liver surgery
Dear Janderson,

Thanks a lot for your reply. And your personal story is very encouraging.

Now I am leaning to agree with my mom's oncologist. If possible, would you share a little bit more about your experience on How long it took you to recover from the second and the third liver surgery? Was it signficant longer than the first one? I was a little bit concerned that 2 months might be too short between the first and the second surgery.

I saw that you are in treatment-free now. That is great! You really beat the cancer.

Best,

Gary

2 months is very short
2 months is very short between surgeries. I went 18 months between the first and second. The second surgery was easier. I was out of the hospital on the third day. The third one is a different story. I am still recovering however the first 2 were wedge sections. The third one was the entire right lobe and part of my diaphram.

I hope that helps.

annalexandria

seek@light said:

Thanks
Hi Anna,

This is exactly the information I am looking for. My mom is relatively healthy and the doctor believed that she could tolerate another surgery. I hope so.

You have done a great job so far. You will beat your rare cancer for sure!

Happy holiday.

Gary

Thanks-
and happy holidays to you as well!

rlridings

difficult to have surgery if the tumor disappeared after chem.
I was told this at the Mayo when I went for a second opinion - "we would have to keep a close watch on the tumor because if it reduces to where it disappears then we cant operate" - I then went to MD Anderson and they said not to worry - "we will know where it was and be able to take out that area" - so you should not be told to worry about not being able to operate if it disappears

seek@light

thanks a LOT to everyone
First of all, thanks a lot to those who provided their opinions to my post below, much appreciated. Those are the foundation for me to discuss with the doctors.

Also I would like to thank this board as well; I read many threads (so warm and so kind), your journeies in "about me" (so encouraging and so positive) and all this made me see lights at the dark tunnel, that is what I am trying to do here -- "Seek Light".

Back to my mom's situation. We got the result. Bad thing is taht she did have a relatively large tumor in the liver. Good thing (now I look at postive side) is that she only had one in the liver, not spreading to other organs yet.

After meeting with surgeron, oncologist, and doctor on liver issues, it was agreed that it would be the right to wait for two more rounds of chem, then have surgery if appropriate. This is good because we will have operation-free new year and chinese new year as well (01/22)!

Happy New Year!

Lovekitties

seek@light said:

thanks a LOT to everyone
First of all, thanks a lot to those who provided their opinions to my post below, much appreciated. Those are the foundation for me to discuss with the doctors.

Also I would like to thank this board as well; I read many threads (so warm and so kind), your journeies in "about me" (so encouraging and so positive) and all this made me see lights at the dark tunnel, that is what I am trying to do here -- "Seek Light".

Back to my mom's situation. We got the result. Bad thing is taht she did have a relatively large tumor in the liver. Good thing (now I look at postive side) is that she only had one in the liver, not spreading to other organs yet.

After meeting with surgeron, oncologist, and doctor on liver issues, it was agreed that it would be the right to wait for two more rounds of chem, then have surgery if appropriate. This is good because we will have operation-free new year and chinese new year as well (01/22)!

Happy New Year!

Happy New Year to you and mom
I am glad that you are feeling better about your mom's situation and that you both agree with the plan.

Wishing for good results on chemo and surgery.

Keep us posted and don't hesitate to ask anything or just hang out with us.

Marie who loves kitties