Synovial Sarcoma - Online Support Group

Primary synovial sarcoma of lung pneumonectomy


Hi there,

First of all, this is my first post to the forum so hi to everyone !
I have been reading this forum for quite a while and now that I’m in a hospital and have some spare time, I thought I would share my story.

I’m 29 years old male from Finland, I’m passioned about Thai Boxing, running and gym.

I got my first symptoms in about April-June 2017. I started feeling a little cough when exercising. The cough seemed to last longer than it should, so after a few weeks I finally went to see my occupational health care doctor. He ran some tests, and in July 2017 I was diagnosed a mycoplasm. I had some strong antibiotics, but the cough continued. I was sent to a lung specialist, who described me even stronger antibiotics for pneumonia. At this point, my breath was really heavy and I couldn’t do any exercise. I returned to the doctor a couple weeks later and she was shocked that the strong antibiotics had little to no effect at all. Then she was suspecting it might be asthma, so she described me some asthma medicine and told me to come back in one month to see if they had any effect. Of course the asthma medicine did nothing, so I was sent to a CT scan.

After the CT, I went to a vacation in Spain, had some hard time breathing there and couldn’t really do much, The first night, I had probably 40C feaver.

Anyhow after one week of vacation, I returned to my doctor. This was in November 2017. I had my doctors appointment in the evening around 18:00, when the doctor came in with the CT results her face looked really worried. She said that a mass of about 2cm was found from my left main bronchial tube. She called to the University Central Hospital right away and got a doctors time for me in the same evening.

So I went to see the doctor and they did a bronchoscopy to me (I was awake during the procedure and I could see the mass with my own eyes on the monitor). The mass was moving with my breath, it was attached close to the intersection of the bronchial tubes leading to upper and lower lobes of the lung. The mass was almost floating in the bronchial tube, attached with only a thin root. They took some biopsies, but they were not able to do the diagnose from them. Probably they didn’t have large enough samples to run all the necessary tests.

After Christmas, I got time to a bronchoscopy surgery, where the mass was removed. Only the root remained, so the surgery was not with clear margins . When I woke up from the surgery, I felt completely normal, like Id never been sick at all. The tumor was about 4cm from the widest diagram.

After about one month at the end of January 2018, I got a call from the doctor. The pathology results had arrived and It was diagnosed as synovial sarcoma. In the hospital that I was treated in, they have this meeting every week, where the hospitals best experts review every sarcoma case in a sarcoma team. They had decided that the best way was to give me some neoadjuvant radiochemotherapy before they would remove the “root” of the tumor. At this point, they told me that they would probably just remove a small length from the bronchial tube that the tumor was attached in.

However, my IA chemo started in the beginning of Feb 2018. The plan was to give me 4 rounds of doxorubicin and ifosfamide. I got treated with radiotherapy in between the syto’s, in 48Gy in total. My body took the treatments relatively well, even though I could’n do much in the first week every time I got chemo. The radiation also burned my esophagus, so I had to eat really strong pain medication in order to be able to eat (oxynorm + oxycontin + panadol).

However, in the control CT they took in May 2018 the tumor had shrank from 1cm to about 7mm and the remaining tumor looked like just scar tissue. Doctors told me that the resukts were “excellent”. I also had a full body PET scan and It showed no signs of metastatic.

In June 2018 I had a meeting with the surgeon. My surgeon is probably the best thorax surgeon in Finland and among the best ones in Europe too, so I was really lucky in that sense. He said that he saw my case first time already in February and has given it a lot of thought. He told me that he wanted to do me pneumonectomy (removal of the lung). Earlier I was told that a smaller surgery would do the trick, since the tumor hadn’t spread locally and was not metastatic. Of course the biggest thought in my mind was that how could I do the things that love with only one lung ? I’m used to spend most of my free time at the Thai-kickboxing gym and I move 6-7 days a week for about 2-3 hours. The doctor had me convinced that I would be able to continue active life after the surgery, since my right lung did already about 70% of the work according to the test they ran to me. He told me that the remaining lung would expand to the empty space and the capacity would grow.

However, after giving the pneumonectomy some though I decided that it would be the best option for me, so that I wouldn’t have to worry all the time that the cancer will come back to an other section of the lung after it is removed. The doctor also told me that he cannot promise, but that I had really good change of being cured from this terrible disease if we will do it. He said that he did not do the decision on light basis, but the SS is so dangerous and spreads so easily that this is the only way we can prevent local re-occurrence for sure. He said that with this operation we would get extremely good clear margins.

So, the operation was set on July 6th 2018. The operation took only 1 hour and 50 minutes, everything went just perfect. All the samples that was taken close by the tumor and the lung were clean. I woke up from the surgery and didn’t need any intensive care after it. I felt surprisingly well, considering how large operation it is. Next day I was already walking on the hospitals aisles shocking all the nurses and doctors how fast I recover. Everyone was telling me how my good physique is helping me.

I’m writing this text in the hospital, still recovering from the surgery. Soon I wont need the epidural catheter anymore for pain and I will probably get home on Friday. There’s not much point in this text, I just thought I would share my story about SS since I’ve got a lot of free time here in the hospital and I’ve been reading this forum for quite some time.

Even though I lost a lung, I still feel happy that I have been able to be treated, as I know that all of us are not as lucky. Now I feel like that I’m cancer free, since the lung does not even exist where the cancer was. The pathology results will arrive in about one month so after that they will decide in the sarcoma meeting my next step. There is a change that I still need couple rounds of chemo for precaution, but I hope not.

Is there anyone in this forum that has had a similar case, a SS lung that was removed and got cured with that treatment ? if there is anyone, I would love to hear your story.



Thank you for sharing your story, Rosberg. It is therapeutic for the writer and the reader. I am new to the forum. My sarcoma is synovial sarcoma in my ankle joint. This is my second go-around in the same place since 2016. In a strange way it isn’t as scary the second time around. I am more open to a final option of amputation. You might say that was what you did with respect to your lung. My first preference is healing by God my Creator. Many people are praying in faith for that for me. If He chooses not to I will know. Unless the docs at my consult at Univ of California Davis can give me every confidence next week that a re-run surgery will get all the cancer and if God chooses not to heal me because He has another plan for me then I am becoming very content with the below the knee amputation. The key for me at 67 y/o is to immerse myself in the world of amputees and prosthetics to demystify it and it becomes my “new normal”. That I have done this week. I am so blessed to have a husband who does the research and makes the connections because no matter what choice I make it impacts him and us as a couple who will celebrate our 38th anniversary tomorrow.

I am not as active as you, but I refuse to forego a full life. I am pro-actively beefing up my immune system with nutrition and essential oils and exercising particular muscle groups to conquer whatever way I need to go, even miraculous healing. I want to be a good steward of this body to honor the One who created it. I will pray for your full recovery.



Hi Roseberg,

How are you feeling now. Hope you are back to kick boxing :slight_smile:


Hi Supergirl,

Currently I´m doing just fine, thanks for asking, celebrating my 30th birthday this Friday! Can´t feel the difference living with one lung in “normal life”, but in uphills etc. I get out of breath quite easily. Kick boxing is probably too heavy exercise for me, but perhaps I can continue my hobby in some kind of lighter form.

Got clean papers from my 4 month scan already and heading to 6 month CT in few weeks and follow up doctors meeting in January. I´m actually participating in a study where they take a “low-dose CT scan” on every control. Normal procedure would be to take only X-ray images every 2 months and CT every 6 months (don´t know if it´s the same for everyone?) They told me that the study is to find out that can metastasis be found earlier with some kind of new low-dose radiation formula compared to normal X-ray images. So because of the study I get “extra” CT-scanned 7 times during the follow up, but since it´s low-dose, the radiation I receive from the images is going to be insignificant.

I read about the nodule findings on your last scan, but was good to hear they were probably just because of the flue.

Hope you´re well!



That’s great news. Advance birthday wishes to you and prayers for everything to be smooth and clear going forward :slight_smile:


I always like seeing primary chest wall SS patients doing well… (Mine was in my chest wall as well)

Did you have anything else removed with the lung? Like diaphragm or plurea lining? I’m currently considering a full left lung removal and lining. I’ve already had two wedge resections of the left lung and diaphragm.

I’m glad you didn’t notice much difference. I was an athlete and very active. I have noticed a significant decrease in breathing with each lung surgery… But it could be the 60 rounds of radiation, 7 rounds of AIM and 4 rounds of high dose Ifos that has made things worse.


Hi Wsp,

The tumor was growing in my left main bronchial tube, and the resection was done from the “root” of that tube. I made a picture with MS paint to help you visualize the tumor location and the resection line. As far as I know, they “only” removed the left lung along with 6 lymph nodes from the surrounding areas (they were all clean). I can try to translate the surgery notes from Finnish if you are interested.

Of course I can notice a significant decrease in breathing as well, but I just mean it does not effect my normal life (cooking, working, etc,…)

One kind of annoying problem I have had after the surgery is some serious heartburn, though it might be because of the radiation too, did you have anything similar after your surgery? Hopefully I get some help to that problem when I go to see my doctor next week. Still waiting for my 6 months CT-scan results, hope they come out clean.


My prayers for your full recovery and a perfectly healthy life in the future.