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Pulmonary Artery Sarcoma

Chartzell
Posts: 1
Joined: Mar 2013

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?

monnatn
Posts: 2
Joined: Jun 2013

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.

monnatn
Posts: 2
Joined: Jun 2013

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>

Sarcoma wife
Posts: 1
Joined: Aug 2013

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. 

 

Hansumyee
Posts: 1
Joined: Sep 2013

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

CarolynHSarcoma...
Posts: 1
Joined: Nov 2013

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. 

debraK
Posts: 1
Joined: Jun 2014

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?

 

 

Stevestir
Posts: 1
Joined: Jul 2014

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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