Kathy and Tom
Wonderful news
Back at you with in our thoughts
Sincerely
Debbie and family
Tom from Pennsylvania - Dx 2002, RIP 2021
Re: Tom from Pennsylvania - Dx 2002
Awesome, hoping for the good brain scan result as well. How long it is from the last thoracic surgery by Dr.Rolle?
I usually advocate using cryo or RFA versus radiosurgery for the lung mets from the fear of the radiation pneumonitis but it looks like there is a very big variability between the patients how prone they are in getting it as a side effect from the radiosurgery. I.e. since Tom did not get it before, the chances are greater that he is not getting it in the future, especially if there is a very limited lung tissue volume that gets affected by the irradiation. Your radiosurgery doc is good too! Killed it reliably.
Was his L4 (recurrent primary) checked as well, what does clean mean if it was - has it completely resolved after the radiosurgery? I am asking because there is a great need to improve our understanding what can be done when the primary tumor location precludes it from the complete resection with the good positive margins, if it is justifiable to go for the close margins or even scrap the contact surface and to deal with the recurrence later if it occurs.
I usually advocate using cryo or RFA versus radiosurgery for the lung mets from the fear of the radiation pneumonitis but it looks like there is a very big variability between the patients how prone they are in getting it as a side effect from the radiosurgery. I.e. since Tom did not get it before, the chances are greater that he is not getting it in the future, especially if there is a very limited lung tissue volume that gets affected by the irradiation. Your radiosurgery doc is good too! Killed it reliably.
Was his L4 (recurrent primary) checked as well, what does clean mean if it was - has it completely resolved after the radiosurgery? I am asking because there is a great need to improve our understanding what can be done when the primary tumor location precludes it from the complete resection with the good positive margins, if it is justifiable to go for the close margins or even scrap the contact surface and to deal with the recurrence later if it occurs.
Olga
Re: Tom from Pennsylvania - Dx 2002
Hi Everyone,
The last surgery by Dr. Rolle was in May of 08. Yes the L4 looks really good. There was a scare there a few years ago that was again treated with radiosurgery. It was thought to have not worked initially as it looked bigger in the scans, but it now appears to have died. I believe Olga you had mentioned swelling after treatment which was indeed the case. I too was fearful of more radiosurgery on his lungs - or anywhere for that matter, but Tom feels so good about the success he has had with the Doctors at UPMC Shadyside in Pittsburgh and he wanted it treated quickly.
The last surgery by Dr. Rolle was in May of 08. Yes the L4 looks really good. There was a scare there a few years ago that was again treated with radiosurgery. It was thought to have not worked initially as it looked bigger in the scans, but it now appears to have died. I believe Olga you had mentioned swelling after treatment which was indeed the case. I too was fearful of more radiosurgery on his lungs - or anywhere for that matter, but Tom feels so good about the success he has had with the Doctors at UPMC Shadyside in Pittsburgh and he wanted it treated quickly.
Re: Tom from Pennsylvania - Dx 2002
Hi Kathy and Tom
I hope the news is good with the brain scan just having been completed, continued prayers..
With Tom's L 4 tumor , I assumed it was a metasties from the leg?
Would you guys mind describing the procedure of radio surgery, as I am having a hard time wrapping my mind as per wiklipedia.
Was it a localized radio treatment as it was close to the spine?
On another note-
How big was the primary tumor and how long did you guy think it had been there?
When first DX? Were you given a guesstimate to how long the tumor had been there before it was found?
After a years triathlon with Joshua's DX, biopsy, 2x Dr. Rolle, we need to get a plan.I can say with certainy,that we all feel very lucky to have what we have.. Each other and life.
Love
Debbie
I hope the news is good with the brain scan just having been completed, continued prayers..
With Tom's L 4 tumor , I assumed it was a metasties from the leg?
Would you guys mind describing the procedure of radio surgery, as I am having a hard time wrapping my mind as per wiklipedia.
Was it a localized radio treatment as it was close to the spine?
On another note-
How big was the primary tumor and how long did you guy think it had been there?
When first DX? Were you given a guesstimate to how long the tumor had been there before it was found?
After a years triathlon with Joshua's DX, biopsy, 2x Dr. Rolle, we need to get a plan.I can say with certainy,that we all feel very lucky to have what we have.. Each other and life.
Love
Debbie
Debbie
Re: Tom from Pennsylvania - Dx 2002
Hi Debbie,
Tom's primary was a retroperitoneal mass that measured 12.8 x 11.5 x 10.7 cm. We have been given various opinions of how long it was there. Most Doctors feel it was around 10 years, which coincides with a bad accident he was in, as well as a time where he was going through terrible night sweats. A few Doctors said it could have been from birth. I guess we will never now.
As for radiosurgery. It is a non-invasive localized radiation that is done as an out-patient procedure. Tom has had no real side effects from this treatment and they have been highly effective for him. All of his treatments have been done at University of Pittsburgh Medical Center at Shadyside (for the lungs).
Blessings and as always thinking of you and yours,
Kathy
Tom's primary was a retroperitoneal mass that measured 12.8 x 11.5 x 10.7 cm. We have been given various opinions of how long it was there. Most Doctors feel it was around 10 years, which coincides with a bad accident he was in, as well as a time where he was going through terrible night sweats. A few Doctors said it could have been from birth. I guess we will never now.
As for radiosurgery. It is a non-invasive localized radiation that is done as an out-patient procedure. Tom has had no real side effects from this treatment and they have been highly effective for him. All of his treatments have been done at University of Pittsburgh Medical Center at Shadyside (for the lungs).
Blessings and as always thinking of you and yours,
Kathy
Re: Tom from Pennsylvania - Dx 2002
Debbie,
I should clarify that Tom has had radiosurgery done on this brain, the L4 and his lungs. The L4 was done with radiosurgery due to location and the fact that they felt traditional surgery risks out numbered the benefits.
Kathy
I should clarify that Tom has had radiosurgery done on this brain, the L4 and his lungs. The L4 was done with radiosurgery due to location and the fact that they felt traditional surgery risks out numbered the benefits.
Kathy
Re: Tom from Pennsylvania - Dx 2002
Debbie, I wanted to add some info - Kathy will correct me if needed. Tom's primary (13cm tumor) was not in the leg but in the retroperitoneum, twisted around nerves, so they had to remove the femural nerve to do the resection and had to go for no clean (2cm+) oncological margins due to a lots of other nerves and vessels surrounding that - it was a very complicated abdominal surgery. The L4 tumor is located very close to where the primary was and it is unclear if this is a local recurrence due to an initial incomplete resection or a local tumor spread from the primary.
Olga
Re: Tom from Pennsylvania - Dx 2002
Yes Olga that is correct. Thank you for clarifying. 
Re: Tom from Pennsylvania - Dx 2002
Olga
Thanks for the clarification.
How is radio surgery performed ? Does it involve small incisions ?
Kathy
Our first meeting with the surgeon after surgery we were left with the impression that there could be a determination to how old the tumor was but were later told no by the oncologist , not surgeon
Josh had night sweats too
On another note, did Tom ever experience pustules after insect bites
Didn't make any difference to what bit him
Josh experience those from early age on into adulthood
Hope you have good news on scan
Love
Debbie
Thanks for the clarification.
How is radio surgery performed ? Does it involve small incisions ?
Kathy
Our first meeting with the surgeon after surgery we were left with the impression that there could be a determination to how old the tumor was but were later told no by the oncologist , not surgeon
Josh had night sweats too
On another note, did Tom ever experience pustules after insect bites
Didn't make any difference to what bit him
Josh experience those from early age on into adulthood
Hope you have good news on scan
Love
Debbie
Re: Tom from Pennsylvania - Dx 2002
Radiosurgery is a radiation treatment with no incision. Radiosurgery is a very high dose given in 1 or 2 treatments versus moderate doses given in 2-3 weeks of treatment with the radiation therapy. There are different software/hardware platforms to deliver the radiosurgery accurately as the dose is really high and it basically fries the target, with the registered names like CyberKnife, Novalis, Synchrony etc. that were developed and are sold by diff. companies. They mostly work with the X-Ray radiation but also with the neutrons etc.
There are some problems and side effects with the radiosurgery as the radiation is scattering around the target and surrounding tissue can be damaged causing post-irradiation fibrosis, plus the process can not be monitored as it is being done but only by the follow up scans (cryo can be monitored as they look at what they do). But in some cases and locations local ablation can not be done so the risk of having the radiosurgery becomes acceptable. It also less invasive.
There are some problems and side effects with the radiosurgery as the radiation is scattering around the target and surrounding tissue can be damaged causing post-irradiation fibrosis, plus the process can not be monitored as it is being done but only by the follow up scans (cryo can be monitored as they look at what they do). But in some cases and locations local ablation can not be done so the risk of having the radiosurgery becomes acceptable. It also less invasive.
Olga
Re: Tom from Pennsylvania - Dx 2002
Debbie,
As Olga mentioned it is non-invasive. Tom will have a planning CT done about a week prior to treatment. They hit the tumor with high doses of radiation from all angels. His most recent met was treated with one treatment. He has had others in the past that have taken more. They mold your body in the planning CT and put a cover on you that "sucks the air out" so that you don't move. He describes the "mold" as laying in a bean bag. Tom has mentioned that for him the only side effect has been heart burn.
Blessings,
Kathy
As Olga mentioned it is non-invasive. Tom will have a planning CT done about a week prior to treatment. They hit the tumor with high doses of radiation from all angels. His most recent met was treated with one treatment. He has had others in the past that have taken more. They mold your body in the planning CT and put a cover on you that "sucks the air out" so that you don't move. He describes the "mold" as laying in a bean bag. Tom has mentioned that for him the only side effect has been heart burn.
Blessings,
Kathy
Re: Tom from Pennsylvania - Dx 2002
We were just given the news that the brain looks great! I think we will take our 3 beautiful children out to dinner to celebrate! Praise God!
hugs,
Kathy
hugs,
Kathy
Re: Tom from Pennsylvania - Dx 2002
Congratulations, Kathy & Tom! I hope Tom continues to enjoy stability, and you continue to remain diligent in properly timed scan intervals. When are the next scans scheduled for?
Re: Tom from Pennsylvania - Dx 2002
Ivan, I am so glad that you asked that. We could use some advice. We are torn. We hate to see him go through so many scans. Back, brain and lungs have been every 6 mo at this point. Well, the lungs have been more like 3-4. The brain has been clean since 08'. Would it be okay to go a year or should we do it sooner? We feel a little lost with this, all of your opinions mean a great deal to us! We are not impressed with our current oncologist and are looking for a new one. He is a very nice man, but we feel he is so impressed with how Tom looks and what he continues to be able to do, that he thinks we should be grateful that we have come this far. Obviously he has never said this, but it is a feeling that we both have had after our meetings with him. We basically use him to right the scripts and we take it from there.
We are eager to hear from you all!
Thanks for the love and support!
Kathy
We are eager to hear from you all!
Thanks for the love and support!
Kathy
Re: Tom from Pennsylvania - Dx 2002
Kathy, in general your current schedule looks very good although I would go for everything 6 months at this point incl. lungs and he should have a bone scan once a year and abdominal CT once a year. What type of scans are done for the back, brain and lungs? It should be MRI for the back and brain (no radiation damage) and CT for the lungs. Unfortunately sometimes ASPS produces some more faster growing clones and a year for the brain met might be way to much - you had the great success with finding and treating them with the radiosurgery on a very small size and this is how it should stay. Any of the treated mets could later be found to have been treated incompletely - i.e. if there is an even small amount of the viable tissue left it can recover years after and then it often grows faster, especially the spine met where the closeness to the spine column and its rather big size are the risk factors.
Olga