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One year later


#1

It's been exactly one year since I had my terrorist removed from the left abdominal wall. It's been a good year until now. A new SS has developed on the right side just above/on the liver behind a rib. I can actually feel it. It's small, 2.5 x 2.0 cm, but it has to come out. Have a PET scan next week to identify exactly where it is and how deep it is as the rib is "hiding" it. The following week is another consult with the oncologist and then off to the surgeon. Hoping a "lap" will be possible and still achieve clear margins, but the oncologist has already suggested radiation may be needed after the surgery. Here we go again!

Please keep me in your thoughts as I do all of you. Together we will beat this!!!


#2

Good luck with your scan! I hope this is an easy fix...


#3

I hope everything is quick, good luck


#4

I hope you get rid of it easily, good luck .


#5

Best wishes ,hope all comes out ok!!


#6

Has anyone had experience with interactive radiography? It's been suggested as one of my options. It is minimally invasive and burns the sarcoma to death. M S Kettering is using it as are other sarcoma centers.


#7

Never heard of interactive radiography and cannot find any information about it. Is it a kind of radiation therapy?


#8



Elodie Espesset said:

Never heard of interactive radiography and cannot find any information about it. Is it a kind of radiation therapy?


#9

Sorry. My mind is just reeling from yesterday's discussions. It's called Interventional Radiology. A doctor at the Texas Medical Center in Galvaston is having great success especially with prostrate cancer. He addresses the liver as well. Its a type of radiation.


#10

Then I heard about it at the last annual patient educational conference organized by the SFA in New York. The doctor who was presenting it was David Madoff from Weill Cornell. Here a video where he is explaining the concept:

https://www.youtube.com/watch?v=NV5Lh1QsoQE

This includes many different types of procedures. Cryoablation is one type for which I know successful cases with sarcoma. Dr. Littrup is the most famous specialists for this in the sarcoma world. He works at Rhode Island hospital at the moment.

There is also a trial looking at these procedures:

http://www.synovialsarcomasurvivors.org/forum/topics/cryoablation-rfa-microwave-ablation-trial


#11

Things getting more confusing. The CAT and the PET did not correspond. So, tomorrow I go for an MRI for more definition. The surgeon does NOT think the spots on the liver are cancer. He told us the synovial tumor in the abdominal wall would have metastasized to the lungs, not the liver. If I had had the tumor in the colon, it would more likely have gone to the liver. He did resection my colon as a precaution last year, but there is no indication of cancer in the colon.

After the MRI, we'll do a LAP. During the LAP, an ultra sound will be used, a biopsy done with doctor in room to analyze it. . He can do ablation (heat) to burn any thing suspicious and we'll go from there.

My mouth dropped when he said he didn't think it was cancer as did my husband's and my friend (I always take a friend with us to take notes). We are so optimistic after the dark picture the oncologist (who is new) painted for us. I'll keep you posted.

Thank you to everyone for your support. Prayer and a positive attitude are such live savers!!!


#12

I hope the MRI and LAP confirm it is not a metastasis. Good luck!


#13

In three weeks, the mass grew from 2.5 to 3.9. Surgery Monday, Nov. 16, one year and one month from the first surgery. The mass is very close to a blood vessel in the liver but we are hoping to remove with clear margins without touching the vessel. If the vessel become involved, I'll lose part of the liver and a bypass will need to be done. Five plus days in the hospital. Yuck!

L5 has become suspicious so have an MRI today to out rule any trouble there. Could be a compressed disk, but uptake on the PET was 4.5 so we'll see.

I am not looking forward to this but I'll make the best of it. Please keep me in your thoughts and prayers. I'll keep you posted.


#14

Good luck Ellen! It's good that they can do surgery. I hope they do get clear margins and you recover quickly! One day at a time...

Ellen said:

In three weeks, the mass grew from 2.5 to 3.9. Surgery Monday, Nov. 16, one year and one month from the first surgery. The mass is very close to a blood vessel in the liver but we are hoping to remove with clear margins without touching the vessel. If the vessel become involved, I'll lose part of the liver and a bypass will need to be done. Five plus days in the hospital. Yuck!

L5 has become suspicious so have an MRI today to out rule any trouble there. Could be a compressed disk, but uptake on the PET was 4.5 so we'll see.

I am not looking forward to this but I'll make the best of it. Please keep me in your thoughts and prayers. I'll keep you posted.


#15



Ellen said:

In three weeks, the mass grew from 2.5 to 3.9. Surgery Monday, Nov. 16, one year and one month from the first surgery. The mass is very close to a blood vessel in the liver but we are hoping to remove with clear margins without touching the vessel. If the vessel become involved, I'll lose part of the liver and a bypass will need to be done. Five plus days in the hospital. Yuck!

L5 has become suspicious so have an MRI today to out rule any trouble there. Could be a compressed disk, but uptake on the PET was 4.5 so we'll see.

I am not looking forward to this but I'll make the best of it. Please keep me in your thoughts and prayers. I'll keep you posted.


#16

Surgery done and not as bad as the last one. The little terrorist wiggled between the liver and the abdominal wall. The surgeon had to lift the liver up and the the tumor plopped down. He lifted it out and them attended to the stem. Once that was out he ablated the area. There is some suspicion the this tumor may have been the original mass and last year's the secondary mass. At any rate, it puts me at stage 4 which is a bummer.

The surgeon, who readily admits he is not an oncologists, thinks chemo might be appropriate to eliminate any microscopic lingerers. He said margins were clean but not clear (I may have that reversed) .He mentioned a MACE cocktail. Anyone familiar with that?


Also, I can't believe i spend 4 days in the hospital with nothing but broth and jello and still gained 10 pounds!!! Fluid, I know, but still amazing.

Still need to do the MRIs for L5 and lower back


#17

You definitely need to see a sarcoma specialist. MACE is used for AML. Never heard of it being used for sarcoma...


#18

Thank you Elodie. See oncol Wednesday and then will decide on MD Anderson


#19

Keep us posted and good luck!

Ellen said:

Thank you Elodie. See oncol Wednesday and then will decide on MD Anderson


#20

Surgery was so much easier this time. Switched oncologist as well. Problem, oncologist says chemo will not help so have been referred to MD Anderson in Houston hoping they can make suggestions or have info on clinical trials. Appt next week. There has got to be something to do as I am now stage 4. I hate not being proactive.