Pulmonary Artery Sarcoma
In Sept of 2012, I was diagnosed after a heart attack that I had a tumor in my pulmonary artery. I had never heard of Sarcoma before that. I've heard it's one of the rarest forms of Sarcoma with only about 200 reported live cases. This is usually found post mortem. At age 35, the wife and mother to two beautiful kids, I have been shaken to my core. I'm told prognosis is not good based on the 200 cases. We don't really know about my case yet. I've had 4 rounds of intense chemo (5 day stays at Emory) and I have two weeks of 7 total weeks left of radiation. I was told the chemo probably did not do anything...no shrinkage to the tumor, but at least no growth either!! Very hopeful the radiation does the trick. I will have my next test in about a month.
I know because this is so rare that it may be hard for me to find anyone who has this....ANYONE?
Comments
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pulmonary artery sarcoma
Hi,
I am a 48 year old woman who was diagnosed with pulmonary artery sarcoma (UPS) in 1/2010. I had the actual surgery to remove the tumor at Duke in 12/2009 and then had 5 rounds of doxorubicin to shrink lung tumors. At some point after the surgery I suffered a heart attack but no one can pinpoint when - I had too much going on in my body with pain from surgery and chemo. I am telling you this because a) we are very rare and 2) I am still alive and kicking.
Please let me know if I can answer any questions for you and you want to chat privately. I have met 2 other people with the same diagnosis since my journey began in late 2009. I hope the radiation helps. It was not recommended in my case. Hang in there!!
M.J.
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pulmonary artery sarcoma
I am a 48 year old woman who was diagnosed with pulmonary artery sarcoma in 1/2010. I had surgery to remove the tumor at Duke in 12/2009. I then received 5 rounds of doxorubicin as adjunctive therapy. At some point I suffered a heart attack after the surgery but we arent sure when. Between the pain of recovery and chemo side effects it could have happened any time.
I go for scans every 3 -4 months and other than some werid lung spots that appear and disappear, I am doing well. Radiation was not an option for me. I have met 2 other people since I started my journey with the same diagnosis.
Hang in there and if you would ever like to chat privately, feel free to sene me an email.
M.J>
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You are not alone
Hi. My husband was diagnosed last month with pulmonary artery sarcoma (also UPS) after months of complaining of shortness of breath and a misdiagnosis of a saddle pulmonary embolism with failed thrombolytic therapy. He has metastases to his lung, adrenal glands, and right arm. He is currently being treated at mass general hospital in Boston and receiving his second round of chemo with doxorubicin and ifosfamide. He will likely have surgery to debulk or remove the primary tumor but we are trying chemo first to see if that might shrink it or any of the mets.
I can understand your feelings of panic. We are both in our 30s and I am currently 7 months pregnant with our second child; our first is not quite 3 years old. We are holding onto our faith and relying on the expertise at MGH to meet my husbands goal of walking our unborn daughter down the aisle one day at her wedding. We are told we will need a good amount of luck for that to happen. I hope your treatments have been effective and that you and your family enjoy a long life together.
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Me three
Hi thereI am also dealing with a diagnosis of pulmonary artery sarcoma and was told its exceedingly rare. Mine unfortunately spread to both lungs and kidneys. I have been through 6 rounds of AIM and it has been shrinking all of the tumors, but still not enough foR surgery. And I'm also dealing with going through treatment and parenting a young child, my son is 3.5 years old (I'm 35). If you are interested in swapping stories, please send me a message, I would love to talk to others going through this too.
Cindy
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Pulmonary Artery Sarcoma
I am a 45 year old woman from WI, disagnosed with a pulmonary artery sarcoma in Feb 2012 after having shortness of breath and being admitted to the hospital for what they thought was a pulmonary embolism. After a couple days of blood thinners, I stopped breathing and lost consciousness. Fortunately, I was on a cardiac unit at the hospital and the surgeon performed emergency surgery. The next day, I was introduced to my oncologist and was quite confused and could not believe I had cancer, as that was never discussed as a possibility. The surgeon was able to resect about 90-95% of the 6x3x2cm tumor from the pulmonary artery, but part had grown into the outflow tract of my right venticle. It was classified as an udifferentiated pleomorphic sarcoma. Most surgeons will never see such a tumor in the heart, so he did not feel qualified to complete the resection.
We sought a 2nd opinion from Dr. R at Methodist Hospital (Not sure if we are supposed to mention specific doctors by name on here) and consulted with the sarcoma team at MDAnderson. I had two cycles of AIM, inpatient 5 days each, then had a second surgery at Methodist Hospital in Houston TX in May 2012. He is an amazing surgeon - so skilled at sarcomas in the heart and PA, and a nice person too. The surgery was successful and I had four more cycles of AIM. In December 2012, I had a tumor removed from my brain, which turned out to be a benign meningioma, completely unrelated, although the neurosurgeon was sure it was sarcoma. Clear scans til this past July 2013 when they found metastasis to my right lung. There had been a suspicious spot ther all along, but the chemo had shrunk it to nothing; now we now it likely just went microscopic and was hiding. I had a thorocotomy with pneumonectomy in August 2013 (complete right lung removed) and they found a recurrence of the sarcoma back in the pulmonary artery. Still healing from my last surgery, very short of breath. Headed back to Houston for more tests and to consult with Dr. R again.
It is good to find others with the same condition. When I was first diagnosed, there were no threads started on here for this specific sarcoma. I just activated my account on here, so do not know if others can msg me privately, but if you can please do so. Would like to know how all of you are currently doing and what treatments you are seeking.
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Hi. I am a new member to thisCarolynHSarcomaSurvivor said:Pulmonary Artery Sarcoma
I am a 45 year old woman from WI, disagnosed with a pulmonary artery sarcoma in Feb 2012 after having shortness of breath and being admitted to the hospital for what they thought was a pulmonary embolism. After a couple days of blood thinners, I stopped breathing and lost consciousness. Fortunately, I was on a cardiac unit at the hospital and the surgeon performed emergency surgery. The next day, I was introduced to my oncologist and was quite confused and could not believe I had cancer, as that was never discussed as a possibility. The surgeon was able to resect about 90-95% of the 6x3x2cm tumor from the pulmonary artery, but part had grown into the outflow tract of my right venticle. It was classified as an udifferentiated pleomorphic sarcoma. Most surgeons will never see such a tumor in the heart, so he did not feel qualified to complete the resection.
We sought a 2nd opinion from Dr. R at Methodist Hospital (Not sure if we are supposed to mention specific doctors by name on here) and consulted with the sarcoma team at MDAnderson. I had two cycles of AIM, inpatient 5 days each, then had a second surgery at Methodist Hospital in Houston TX in May 2012. He is an amazing surgeon - so skilled at sarcomas in the heart and PA, and a nice person too. The surgery was successful and I had four more cycles of AIM. In December 2012, I had a tumor removed from my brain, which turned out to be a benign meningioma, completely unrelated, although the neurosurgeon was sure it was sarcoma. Clear scans til this past July 2013 when they found metastasis to my right lung. There had been a suspicious spot ther all along, but the chemo had shrunk it to nothing; now we now it likely just went microscopic and was hiding. I had a thorocotomy with pneumonectomy in August 2013 (complete right lung removed) and they found a recurrence of the sarcoma back in the pulmonary artery. Still healing from my last surgery, very short of breath. Headed back to Houston for more tests and to consult with Dr. R again.
It is good to find others with the same condition. When I was first diagnosed, there were no threads started on here for this specific sarcoma. I just activated my account on here, so do not know if others can msg me privately, but if you can please do so. Would like to know how all of you are currently doing and what treatments you are seeking.
Hi. I am a new member to this site and am glad to find other people who are going through what I am going through. I am a 46 yr old woman diagnosed with Primary Pulminary Angiosarcoma.
My story is so long it's almost hard to write it. Fisrt they found a mass on my right lung and had no idea that it was a sarcoma. After being diagnosed with a blood clot in my pulmonary artery which never went away, they went in and found the main tumor in my artery of my left lung and the mass that on the right lung. They took out the left tumor and artery and 20% of my lung.
They reconstructed my artery and closed me up. I was left with a metastasis mass on my right lung. I have been doing crazy amounts of chemo for 3 months and the tumor is definitely shrinking. It seems to responding very well to the chemo. Thank god!!! I have another CT scan tomorrow to see if it is still shrinking.
I feel good about my prognosis although after reading some stories on this site I am actaully scared to death. Sounds like sarcoma's come back fast and furious? Mine is classified as aggressive. I haven't been able to find many positive stories and such little data because it is so rare.
How are you feeling? What is your next step?
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A positive storydebraK said:Hi. I am a new member to this
Hi. I am a new member to this site and am glad to find other people who are going through what I am going through. I am a 46 yr old woman diagnosed with Primary Pulminary Angiosarcoma.
My story is so long it's almost hard to write it. Fisrt they found a mass on my right lung and had no idea that it was a sarcoma. After being diagnosed with a blood clot in my pulmonary artery which never went away, they went in and found the main tumor in my artery of my left lung and the mass that on the right lung. They took out the left tumor and artery and 20% of my lung.
They reconstructed my artery and closed me up. I was left with a metastasis mass on my right lung. I have been doing crazy amounts of chemo for 3 months and the tumor is definitely shrinking. It seems to responding very well to the chemo. Thank god!!! I have another CT scan tomorrow to see if it is still shrinking.
I feel good about my prognosis although after reading some stories on this site I am actaully scared to death. Sounds like sarcoma's come back fast and furious? Mine is classified as aggressive. I haven't been able to find many positive stories and such little data because it is so rare.
How are you feeling? What is your next step?
Hi Debra.
I'm familiar with that feeling of being scared to death. We are a rare group. I had a surgery at 50yr in Oct 2006 to remove my left lung and part of the pulmonary artery. After some radiation and in spite a prediction for a poor outcome, I've not had any further work done. My Pulmonary Artery Sarcoma was also classified as agressive. Keep your spirits up.
I hope your CT scan looked great!
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Writing on behalf of my dad
Hi. My name is Sarah. I am responding to you because my dad passed Nov. 1, 1995 from Pulmonary Artery Sarcoma. Well, at least that is where it started. He is case number 7 at the Mayo Clinic. To this day I still get looked at like I am crazy when I tell a new dr. or specialist what type of cancer my father had. Reading through the replies it is comforting to see there are others out that have 'beat' this demon.
Let me tell you a little history about my dad. On Dec 8, 1993 he went to the dr because he was having shortness of breath. This was not like my dad. He was not a thin/healthy man nor was he an overweight/unhealthy man. He was 6'4" and weighted 240 lbs. He loved his family and he loved his job, sometimes we joke that his love for family and job was completely equal. Now we lived, part of us still do, in a very small town and the dr he went to was an old family friend. I thank the Good Lord for having Blake in our lives that day. He ran his little tests in office and told my dad to immediately go to the hospital for more tests. That night my dad and mom called my brother and I to the hospital to talk to us. They had already called my sister at college and let her know what was going on. All our small town dr could see was something wasn't right. He was being sent 2 hours awayin the morning to a larger city for more testing. On Dec 11, 1993 (still in larger city) he was rushed into open heart surgery. My mom was told to call in all his family and his priest. He was not making it. I will never forget my 2 hr drive down there crying, trying to figure out what was happening. I was only 19 at the time and could not wrap my brain around dad being so sick and now he is dying. By the time I made it he had made it out of surgery and was doing much better. This is when we found out that he had a tumor in his pulmonary artery that had already spread to his lungs. It had completely closed 1 lung and had partially closed the other. They were able to get 'most' of the tumor (I can't remember the % anymore). He healed and was home (weak but home) for Christmas. The day after Christmas though he was off to the Mayo Clinic with my mom. My brother (he was only 15 at the time) and I were sent to stay at my aunts until they could come home. The time he was at Mayo Clinic seemed like forever but I think it was only really a week or 2. When he came home he sat all 3 of his children down and explained what it was he had, that there were only 6 other people in the world that had this type of cancer besides him, and that his dr's felt he only had about 90 days to live. He is having to tell his 15, 19, and 21 year old children that he could be gone in 3 months. He had a time stamp. I just have to throw in there that I absolutely dispise any dr or anyone who thinks they can actually tell you how much longer you have to live!! We all agreed that he would fight. We all would fight with him. We all stood united against this giant named cancer. It wasn't only his battle. Chemo began, but so did funeral arrangements. My father wanted to make sure that if he was called home then mom would not have to take care of any of that. He planned the whole thing. Right down to having his ashes sent back home by the post office. We didn't have a crematory here and almost 20 years ago you could mail human ashes. You see, dad didn't tell any of us that he was being mailed back home and that was his little last joke on us. January goes by, then February, then March, April, May, June...... Dad is still with us....He beat his time stamp!! He was here, had been in remission but by winter he found our that it had spread to his brain. After the long year we had my parents decided to put my brother in boarding school and send me off on a 3 month hiking trip. My brother just simply needed something that could be normal and my then fiance was joining the military so they said I could use something to take my mind off everything. Dad was still doing well, so my brother and I thought. At the end of February 1995 my family came to visit me on a weekend break. You could see dad wasn't well. He had fallen the day he was heading to meet up with me. When they got back home they found out his cancer had gone from his brain to his spine. I still didn't know this fact until I got home 2 months later at the end of April. Dad had several falls and was doing rehab then. He was officially wheelchair bound. Ramps, hospital bed, and chairlift had all been installed at the house. That summer I moved 3 hours away with my dad's encouragement to go to school. Every weekend I drove home. By August he was bedridden. By October you couldn't understand anything he was saying. He would lay in his bed and just rub his worry rock that was given to him by a very dear friend. Oct. 31 1995 my mom calls me to tell me that dad would not would not be making it throught the night. By the time I made it back to my small town and went to drop off my roommate I was so tired that it would have been very dangerous for me to try to drive out of the very narrow and curvy mountain side they lived on. I spent the night. At 6:15 am on Nov. 1 1995 (All Saints' Day) my sister called to tell me that dad had just died.
My dad's time stamp was for 90 days. We were blessed with 1 year 11 months with him. During that 1 year 11 months we laughed, cried, screamed, blamed, and most of all prayed. We prayed at home, we prayed in public, we prayed every Sunday in our church, and when dad couldn't go to church any more then our small church came to him. I fully believe and will always believe that the power of prayer is what blessed us with almost 2 extra years with my dad. As for the worry rock my dad would lay and just rub, my mom said that it was in his hand as usual but to this day we have not been able to find it. It was not in his hand when he took his last breath. It has just vanished.
I am sorry that this is so long. Yesterday I went to a specialist because I am having some health issues. Once again I was looked at like I was crazy and it made me wonder if anything was on google about this. I found you and the replies. This would be a message board that I never would have wanted to find. In my heart I would have liked for my dad to have been the last case. For it to have just simply ended at case #7. But you are here. You will now be forever in my thoughts, my heart, and my prayers. All of you. This is a very rough road and no one should ever have to go through it. I may not know any of you personally but you have my love, support, and prayers. Thank you for allowing me to tell my families story. I am adding this picture of my dad and brother. It was taken Feb 1995 when I was on my 3 month hiking trip. My brother was actually holding my dad up because he was already losing the use of his legs.
Much love to you all and your families, Sarah0 -
Pulmonary Artery Sarcoma
Hi Folks,
Is there anyone who posted on this feed still out there? They think my sarcoma has come back in my pulmonary artery (orginally diagnosed in 2010) and I am wondering if anyone else has had a recurrence? Looking for treatment options since I dont think I can have another surgery.
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Pulmonary artery sarcoma. Diagnosed June 9, 2015monnatn said:Pulmonary Artery Sarcoma
Hi Folks,
Is there anyone who posted on this feed still out there? They think my sarcoma has come back in my pulmonary artery (orginally diagnosed in 2010) and I am wondering if anyone else has had a recurrence? Looking for treatment options since I dont think I can have another surgery.
My husband is 46 and has never been sick a day in his life. On May 8, 2015 he was diagnosed with a very large pulmonary embolism. The PE was a miss diagnose. We live in Michigan and he is currently seeking treatment at U of M. Would love to speak with anyone who has this condition. Please contact me any time. Thank you. Leann Williams
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Sarcomamonnatn said:Pulmonary Artery Sarcoma
Hi Folks,
Is there anyone who posted on this feed still out there? They think my sarcoma has come back in my pulmonary artery (orginally diagnosed in 2010) and I am wondering if anyone else has had a recurrence? Looking for treatment options since I dont think I can have another surgery.
I would love to hear more about your story. I'm new to this site because my husband was just diagnosed about a month ago. Please contact me at your earliest convenience. Thank you Leann Williams.
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Stevestir said:
A positive story
Hi Debra.
I'm familiar with that feeling of being scared to death. We are a rare group. I had a surgery at 50yr in Oct 2006 to remove my left lung and part of the pulmonary artery. After some radiation and in spite a prediction for a poor outcome, I've not had any further work done. My Pulmonary Artery Sarcoma was also classified as agressive. Keep your spirits up.
I hope your CT scan looked great!
Hey Debra,
Hope you are well. My husband has been diagnosed with a pulmonary artery Sarcoma for which he had a pulmonary artery resection and reconstruction, left pneumonectomy and is currently due to see the oncologist with regard to chemotherapy. He is 38 years old.
I just wanted to connect with someone who has been through a similar situation
We are going to see the oncologist tomorrow.
Any information would be helpful. How are you coping, how were things pre and post chemo? How did the pneumonectomy affect you?
in case I do not hear from you, hope you are well and have your spirits up and are fighting this... Take care
Regards,
SSK
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PASLeann Williams said:Pulmonary artery sarcoma. Diagnosed June 9, 2015
My husband is 46 and has never been sick a day in his life. On May 8, 2015 he was diagnosed with a very large pulmonary embolism. The PE was a miss diagnose. We live in Michigan and he is currently seeking treatment at U of M. Would love to speak with anyone who has this condition. Please contact me any time. Thank you. Leann Williams
Can we talk? Email me at {Content removed by CSN}
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Pul artery sarcomamonnatn said:pulmonary artery sarcoma
I am a 48 year old woman who was diagnosed with pulmonary artery sarcoma in 1/2010. I had surgery to remove the tumor at Duke in 12/2009. I then received 5 rounds of doxorubicin as adjunctive therapy. At some point I suffered a heart attack after the surgery but we arent sure when. Between the pain of recovery and chemo side effects it could have happened any time.
I go for scans every 3 -4 months and other than some werid lung spots that appear and disappear, I am doing well. Radiation was not an option for me. I have met 2 other people since I started my journey with the same diagnosis.
Hang in there and if you would ever like to chat privately, feel free to sene me an email.
M.J>
Hi Mj
i would love to chat privately. What is the best way to do this? I am new to this site. I'm 59 yrs old with intimal pulamnary artery sarcoma.... a lobectomy 18 mos ago followed by proton radiation... how can we chat privately?
Wishing you good health
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Pulmonary Artery Sarcoma
i am a 59 yr old PAS survivor. I had a lobectomy upon initial tumor identification, and later diagnosed with PAS. Margins were not clear so radiation followed. I was clear until about 1 year after surgery when small nodules were found in my lung... watched for several months ...waiting for trial.. not eligible. Now deciding on surgery or chemo. Is there someone I can speak with? There is so little research, we need to speak to each other.
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How is your husband? MyLeann Williams said:Pulmonary artery sarcoma. Diagnosed June 9, 2015
My husband is 46 and has never been sick a day in his life. On May 8, 2015 he was diagnosed with a very large pulmonary embolism. The PE was a miss diagnose. We live in Michigan and he is currently seeking treatment at U of M. Would love to speak with anyone who has this condition. Please contact me any time. Thank you. Leann Williams
How is your husband? My husband was also diagnosed ...this website seems difficult to chat
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Pulmonary Artery Sarcoma
Hello. I was diagnosed with pulmonary artery sarcoma (more technically, “primary pulmonary artery rhabdomyosarcoma”) in late 2013. Doctors said it was “high grade” and probably very aggressive.
I was relatively non-symptomatic beforehand. What brought me to the doctor’s office initially was a persistent cough that had been going on for four months, as well as some shortness of breath.
My treatment began with an open heart surgery to remove the tumor. The surgeon, wizard that he was, successfully removed the whole mass with clean margins and then replaced the parts of the artery that had been cut out. Luckily, the mass had not involved the heart valve, so I didn’t have complications with that.
After about a month or so of healing from the surgery, I began chemotherapy. The idea was that sarcomas tend to spit out microscopic cancer cells (too small for any scanning technology to see) into the body, which then end up in other places and grown into more tumors. So the chemo is administered to kill off any of those tiny, evil cells if they happen to be present.
My chemo seemed to be pretty intense. I alternated between two different chemo protocols, each one containing three different chemo drugs, for a total of six drugs in twelve infusions over eight months. It started out fine but became awful, with multiple side effects. The most persistent and most debilitating effect for me was fatigue. A few months in, and I was not able to work. Luckily, I had very little nausea and spiked a fever high enough to bring me to the emergency room on only one occasion.
It is now three years since the end of the chemo. I feel very lucky to say that, as far as any scanning can detect, I am cancer free. I feel good. Life is good.
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