Dear Mania,
I am so deeply sorry to hear about these very shocking, concerning, and confusing scan results regarding the supposed finding of a previously undiagnosed large 8 centimeter soft tissue mass. My heart breaks for all of the pain, worry, and anguish that I know that you and Paula are experiencing right now. Hopefully some kind of mistake has been made since it seems highly unlikely with the indolent nature of this disease that a previously undiagnosed ASPS tumor could grow that rapidly in such a relatively short time after the last scans. This certainly doesn't seem to make any sense. I Hope that you will be able to obtain a clarification and explanation from Paula's oncologist as soon as possible. I will be anxiously waiting for your next update when your time and the situation allow, and holding very tight to Hope that this is somehow an incorrect reading of the scan by the radiologist. Please take care dear Mania and know that my most special caring thoughts and prayers are with you and Paula.
With special caring and continued Hope,
Bonni
Paula from Poland - Dx 2009 - RIP 31/08/2011
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
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Fictional
Re: Paula
Mania, It is a little hard to tell from the report, but it sounds as if it may have been there before and has only slightly progressed over the last few months. I do know that it is fairly unreliable to know by MRI whether there has been invasion of neighboring structures, but the surgeon will have better idea in the surgery. In general our surgeon told ASPS tends to push and not pull into neighboring structures. Perhaps this is a lymph node? Regardless it will be taken out during surgery.
Keeping Paula in our prayers,
'F'
Keeping Paula in our prayers,
'F'
Re: Paula
Bonni and 'F' thank You for your comforting words.
'F' you are closest to how facts are.
We went through previous descriptions of imaging scans and in PET from may I found that
Multifocal lesion of 97x86x88 mm in size with peripheral uptake of 18F-FDG SUVmax. FDG=2.0 in the right iliac ala and in the surrounding soft tissues; there are two foci showing bone tissue destruction in the region of iliac ala on CT examination.
On the right side, single iliac lymph nodes of 8x9 and 6x8 mm in size poorly accumulating
18F-FDG SUVmax. FDG=1.7 – they were also visible on the previous CT scan.
Perceptible increased uptake of 18F-FDG bilaterally in the adnexa: on the left side SUVmax. FDG=2.6, on the right side SUVmax. FDG=1.7; additionally on the left side in the adnexa, circular (20 mm) hypodense lesion showing no uptake of 18F-FDG – a cyst?
I marked in color what seems to be the 'second' tumor. As it gets clear I will post it here.
Hugs to all of You
'F' you are closest to how facts are.
We went through previous descriptions of imaging scans and in PET from may I found that
Multifocal lesion of 97x86x88 mm in size with peripheral uptake of 18F-FDG SUVmax. FDG=2.0 in the right iliac ala and in the surrounding soft tissues; there are two foci showing bone tissue destruction in the region of iliac ala on CT examination.
On the right side, single iliac lymph nodes of 8x9 and 6x8 mm in size poorly accumulating
18F-FDG SUVmax. FDG=1.7 – they were also visible on the previous CT scan.
Perceptible increased uptake of 18F-FDG bilaterally in the adnexa: on the left side SUVmax. FDG=2.6, on the right side SUVmax. FDG=1.7; additionally on the left side in the adnexa, circular (20 mm) hypodense lesion showing no uptake of 18F-FDG – a cyst?
I marked in color what seems to be the 'second' tumor. As it gets clear I will post it here.
Hugs to all of You
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Fictional
Re: Paula
I know it is a bad feeling that the lymph node may be growing, but the purpose of lymph nodes is to catch and filter and prevent the tumor cells from releasing to other sites of the body, so maybe it is better than if it didn't do all that catching? The lymph node will be removed with surgery on the primary.
Praying for our Lord's presence with you all now, during, and after surgery. : )
Praying for our Lord's presence with you all now, during, and after surgery. : )
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Fictional
Re: Paula
oh - didn't answer your other question - lymph nodes would be the most obvious things that are there...
BTW, the SUV's are low. In the trial 'K''s currently on, they wouldn't count a nodule as being SUV-positive unless it was over 3.0. Sometimes rapidly growing ASPS nodules are higher than 3.0. Those are the ones that usually have to come out surgically.
BTW, the SUV's are low. In the trial 'K''s currently on, they wouldn't count a nodule as being SUV-positive unless it was over 3.0. Sometimes rapidly growing ASPS nodules are higher than 3.0. Those are the ones that usually have to come out surgically.
Re: Paula
Thank You for sharing your knowledge with us 'F'.
It's been clear, that in june we were put to sleep by positive news from CT scans about the regression of primary. We were not carefull enough to ask and read, and stay allert about what PET results said. I am angry we agreed so easy that surgery was postponed 3 times due to financial/administrative matters. Paula is such a worior, so many people in our country cheer for her to win this battle.
'F' you marked that SUV are low -I don't even know exactly what this 'SUV' really means.BTW they are results from may. could it be it changed.
Paula is off Sutent now due to surgery, we try not to think that now cancer is free to go cause Sutent doesn't stop it.
It is very difficult for us, since we have no doctor who we trust 100%. No one here in POland has expierience with ASPS. There is one professor, who we see once in a while he advices us to hold onto boston. In Boston they take responsibility for surgery, not for the whole treatment. It takes our energy sometimes.
I was thinking maybe some of You reading these posts here can think of a name of a doctor from Dana Faber who had treated asps patients, we could contact while in Boston. We will be there for 5 weeks, starting august 12th. . We have our docs in General Mass, but they are team for surgery (surgeon of orthopaedic oncology, general oncology surgeon, urlogist, and radiologist).
What we need now is a plan what to do after surgery? THere are several plans different doctors have for after surgery. But we wish we had more options, to choose from. Going back for sutent seems now controversial.
Now with this extra tumor we are scared risk of loosing a leg is greater. We are scared to talk about it, we count it will not happen. I hope it is still possible.
One of our doctors here told us that You get a chance for live only if you agree for agressive chemo, he said 'you have to almost die to win your life.' Looking at success stories it seems to be true. But I had impression he was talking about sarcomas in general, not about asps. Unfortunately I get this impression quite often.
Anyway, sorry for this bitter dominant of my post. I'm sure You understand.
Healing greatings to all of You
m
It's been clear, that in june we were put to sleep by positive news from CT scans about the regression of primary. We were not carefull enough to ask and read, and stay allert about what PET results said. I am angry we agreed so easy that surgery was postponed 3 times due to financial/administrative matters. Paula is such a worior, so many people in our country cheer for her to win this battle.
'F' you marked that SUV are low -I don't even know exactly what this 'SUV' really means.BTW they are results from may. could it be it changed.
Paula is off Sutent now due to surgery, we try not to think that now cancer is free to go cause Sutent doesn't stop it.
It is very difficult for us, since we have no doctor who we trust 100%. No one here in POland has expierience with ASPS. There is one professor, who we see once in a while he advices us to hold onto boston. In Boston they take responsibility for surgery, not for the whole treatment. It takes our energy sometimes.
I was thinking maybe some of You reading these posts here can think of a name of a doctor from Dana Faber who had treated asps patients, we could contact while in Boston. We will be there for 5 weeks, starting august 12th. . We have our docs in General Mass, but they are team for surgery (surgeon of orthopaedic oncology, general oncology surgeon, urlogist, and radiologist).
What we need now is a plan what to do after surgery? THere are several plans different doctors have for after surgery. But we wish we had more options, to choose from. Going back for sutent seems now controversial.
Now with this extra tumor we are scared risk of loosing a leg is greater. We are scared to talk about it, we count it will not happen. I hope it is still possible.
One of our doctors here told us that You get a chance for live only if you agree for agressive chemo, he said 'you have to almost die to win your life.' Looking at success stories it seems to be true. But I had impression he was talking about sarcomas in general, not about asps. Unfortunately I get this impression quite often.
Anyway, sorry for this bitter dominant of my post. I'm sure You understand.
Healing greatings to all of You
m
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Fictional
Re: Paula
James Butryrinski is there - he would be great. Contact his office and tell him of Paula's surgery date. He could probably come by and see her after her surgery. She will have to be off medication for at least 3 weeks after surgery to allow things to heal, so no medical decisions will have to be made quickly.
Another is George Demetri, but I think Butryrinski (could he be Polish heritage?) would be better. Demetri travels a lot, and may be too hard to reach - he does more with other sarcomas (non-ASPS) anyway. Butyrinski used to be in Seattle. We spoke with him on the phone and he is quite familiar with ASPS. He seemed like a very nice person.
SUV stands for standardized uptake value - essentially what they follow with tumor activity and PET. ASPS tends to be lower than other cancers (slower growing) - although when the disease gets aggressive, some of the SUVs are higher than 3.0.
Another is George Demetri, but I think Butryrinski (could he be Polish heritage?) would be better. Demetri travels a lot, and may be too hard to reach - he does more with other sarcomas (non-ASPS) anyway. Butyrinski used to be in Seattle. We spoke with him on the phone and he is quite familiar with ASPS. He seemed like a very nice person.
SUV stands for standardized uptake value - essentially what they follow with tumor activity and PET. ASPS tends to be lower than other cancers (slower growing) - although when the disease gets aggressive, some of the SUVs are higher than 3.0.
Re: Paula
Hi again,
I'm reading PETscan results from may and looking at this part : "Perceptible increased uptake of 18F-FDG bilaterally in the adnexa: on the left side SUVmax. FDG=2.6, on the right side SUVmax. FDG=1.7; additionally on the left side in the adnexa, circular (20 mm) hypodense lesion showing no uptake of 18F-FDG – a cyst?"
Does it mean than in the left andexa there is also tumor cells? It's a question to a doctor, but it is a 3 months after we have seen so many doctors and had 2 imaging scans and did not ask.
i hope you are all well.
I'm reading PETscan results from may and looking at this part : "Perceptible increased uptake of 18F-FDG bilaterally in the adnexa: on the left side SUVmax. FDG=2.6, on the right side SUVmax. FDG=1.7; additionally on the left side in the adnexa, circular (20 mm) hypodense lesion showing no uptake of 18F-FDG – a cyst?"
Does it mean than in the left andexa there is also tumor cells? It's a question to a doctor, but it is a 3 months after we have seen so many doctors and had 2 imaging scans and did not ask.
i hope you are all well.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula
Dear Mania,
In referrence to your request for a recommendation for a good sarcoma doctor at Dana Farber with experience in treating ASPS, I agree with 'F' that Dr. James Butrynski would be an excellent choice. Dr. Butrynski was Brittany's primary oncologist at Seattle Cancer Care Aliance in Seattle before he accepted a position at Dana Farber and moved to Boston two years ago. He is a very dedicated, thorough, knowledgeable, kind, caring, and responsive doctor, and we were heartbroken when he moved from Seattle. He is currently working with Clinical Trials for sarcoma patients at Dana Farber, so he would be able to provide you good information on those. Please let me know if I can answer any questions for you about him and our very positive experience with him. Take care.
With special caring thoughts and continued Hope,
Bonni
In referrence to your request for a recommendation for a good sarcoma doctor at Dana Farber with experience in treating ASPS, I agree with 'F' that Dr. James Butrynski would be an excellent choice. Dr. Butrynski was Brittany's primary oncologist at Seattle Cancer Care Aliance in Seattle before he accepted a position at Dana Farber and moved to Boston two years ago. He is a very dedicated, thorough, knowledgeable, kind, caring, and responsive doctor, and we were heartbroken when he moved from Seattle. He is currently working with Clinical Trials for sarcoma patients at Dana Farber, so he would be able to provide you good information on those. Please let me know if I can answer any questions for you about him and our very positive experience with him. Take care.
With special caring thoughts and continued Hope,
Bonni
Re: Paula
After investigating a bit re Paula’s latest scans here is the conclusion:
Scans from june was wrongly described by radiologist here. We took the cd's with CT to the other radiologist:
The ‘new tumor’ was there all the time. It had to progress lately. Unfortunately he didn't have enough time to compare them with the new CT.
It would be crucial to estimate before surgery how much bigger it is now. I'm hoping radiologists from Mass General will estimate it the best.
So, of we go to Boston! I will write soon.
sunny and health wishing beans to You!!!
Scans from june was wrongly described by radiologist here. We took the cd's with CT to the other radiologist:
The ‘new tumor’ was there all the time. It had to progress lately. Unfortunately he didn't have enough time to compare them with the new CT.
It would be crucial to estimate before surgery how much bigger it is now. I'm hoping radiologists from Mass General will estimate it the best.
So, of we go to Boston! I will write soon.
sunny and health wishing beans to You!!!
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Paula
Der Mania,
I am glad that you consulted with another radiologist and were able to get a more accurate interpretation of Paula's most recent scans. We have learned the hard way through a radiologist's inexcusable failure to see and report Brittany's large paraspinal tumor last year that radiologists unfortunately can and do make mistakes. Take care, travel safe, and know that my best wishes and greatest Hope for a very successful outcome to Paula's surgery travel with both of you.
With special caring thoughts and continued Hope,
Bonni
I am glad that you consulted with another radiologist and were able to get a more accurate interpretation of Paula's most recent scans. We have learned the hard way through a radiologist's inexcusable failure to see and report Brittany's large paraspinal tumor last year that radiologists unfortunately can and do make mistakes. Take care, travel safe, and know that my best wishes and greatest Hope for a very successful outcome to Paula's surgery travel with both of you.
With special caring thoughts and continued Hope,
Bonni
Re: Paula
1Hi
We are alrady in Boston, having all kinds of pre/surgery appointments. It is very reasuring to be in hadns of our doctors here. They give
Us an impression they are know what are they doing. We saw dr Butrynski yesterday.Thank You so much for recomendation, it was great to meet him,
And we are sure we see him again once Paula heels after surgery.
The panic which was raised in Poland about new tumor was pointless – it was the old tumor, which slightly progressed. The nature of it is that it consists of
2 or even 3 parts that are combined together. I don’t want to comment on how this panic influenced Paula’s mind.But now she is very calm, ready to give herself
To the hands of team of surgeons. It is very unlogic how today she is swimming, walking and bycycling, and on Thursday she will lay with pain and with half of her iliac bone taken out.
I will keep You posted. Keep Your fingers crossed tomorrow
Healing greetings to all of You
We are alrady in Boston, having all kinds of pre/surgery appointments. It is very reasuring to be in hadns of our doctors here. They give
Us an impression they are know what are they doing. We saw dr Butrynski yesterday.Thank You so much for recomendation, it was great to meet him,
And we are sure we see him again once Paula heels after surgery.
The panic which was raised in Poland about new tumor was pointless – it was the old tumor, which slightly progressed. The nature of it is that it consists of
2 or even 3 parts that are combined together. I don’t want to comment on how this panic influenced Paula’s mind.But now she is very calm, ready to give herself
To the hands of team of surgeons. It is very unlogic how today she is swimming, walking and bycycling, and on Thursday she will lay with pain and with half of her iliac bone taken out.
I will keep You posted. Keep Your fingers crossed tomorrow
Healing greetings to all of You
Re: Paula
Dear All!!!
I am happy to share the great news of today! Surgery was successful! Team of surgeons in General Mass Hospital resected Paulina’s tumor! Main surgeon told me the surgery couldn’t go better!
There were no surprises,no complications, all the risk that was taken under consideration did not happen! It is just so good to hear! We feel very happy today. Very tired but happy.
I want You to know the news. I will write more soon:)
warmly
I am happy to share the great news of today! Surgery was successful! Team of surgeons in General Mass Hospital resected Paulina’s tumor! Main surgeon told me the surgery couldn’t go better!
There were no surprises,no complications, all the risk that was taken under consideration did not happen! It is just so good to hear! We feel very happy today. Very tired but happy.
I want You to know the news. I will write more soon:)
warmly