Synovial Sarcoma Treatments

Synovial Sarcoma - Online Patient Support Group

Tiny Lung Nodules

My husband had his CT scan last Friday to see if he could get back on the clinical trial after his surgery. Unfortunately he is unable to return to the trial because the CT scan showed 3 small slow-growing nodules in his right lung...not the lung he's had the 2 VATS on.

Ugh. So the tumors are too small for surgery, and to few for chemotherapy so we've been advised to wait 3 months to see what they do. The oncologist recommended we try to put it out of our minds for the 3 months and see what they do. We've never done that before, with the previous two lung scares we immediately went to resection...mostly driven by the possibility of this trial. I would love to hear from others what they've heard from their oncologists regarding this type of situation.

Also, we've been really good about "living in the moment", "not letting cancer define us", etc. but we're also really freaked out. Any tips on staying calm, cool, & collected. We remain positive, and very hopeful but aren't immune to the stress of a cancer diagnosis.

As always, thanks for listening.


Katie, this has been my situation for most of the last 4 years. And usually while I wait for a tumor to be big enough to be surgically removed, another appears on the other side (which cannot be removed at the same time since they won't operate 2 lungs in one shot). I feel that SS is mocking me! But I do feel lucky because I am still alive and have had a great quality of life in between surgeries. Better the disease be chronic that fatal...

Katie, I am so sorry. This is the situation that James has been living for 2 years. My advice is to investigate EVERY symptom that Dan has, Do NOT take anything for granted. If you feel that Dan needs a scan then fight for a scan. Three months is a long time. We were told that James' nodes could stay the same for years and years by DF and within a month his lungs were engulfed. Thank God he had not yet had his lifetime dose of doxirubicin and, as of right now, his lungs are back to several nodes....all too small to remove and too many. MOST importantly, enjoy life as much as you can. James has his bad days (as we all do), and honestly, cancer is ALWAYS on your mind. Sarcoma does not define him or James but to "forget about it for a few months", to me, is foolish. I read, I think, I cry, I laugh I investigate every minute of the day.......because of love. Be assertive, be aggressive and be alert. Love, Ellen

Hi Katie. I seem to be in a similar situation as your husband. I had a large sarcoma removed in 2009 but found out last October that 2 nodules had developed in my lung and one in my neck. In England there is a policy of 'watch and wait' and it seems to be normal procedure if they are too small to do anything with. A further scan in December showed that there were indeed 4 nodules in my lung (2 may just have been too small to see on the October scan). I am still watching and waiting and Chemotherapy is inevitable but they are currently monitoring the speed of growth of them. They have left me 2 months and I am due for a chest scan in March. Unlike yourselves I am not as good about living in the moment and find it really hard waiting but it is for the best.

I am not sure if the procedures are the same in England as they are where you are but thought I would share a similar story.

Good luck with your journey. xx

Hi Katie, Good luck with this, hopefully the wait time it going ok and your able to get on with life and anxiety levels aren’t too high. One thing we are doing at the moment to fill the gap and give us something to look forward to is planning a winter holiday somewhere north and nice n hot. maybe a tropical island if the budget allows. Even doing the planning and researching options is lots of fun and keep our mind off cancer matters. Regards Gary

Hi Katie,

How are things going with your husband and the tiny nodules? The medical community in this country has an unusual attitude toward the management of lung mets. My son had several tumors in his lungs and it was considered inoperable. We found a surgeon in Germany who has removed all of the tumors and my son is doing great. If you get frustrated, google this doctor, his name is Dr. Axel Rolle in Coswig, Germany. He uses a laser and the procedure is muscle sparing which allows almost complete recovery of lung function.

Good luck to you,