Synovial Sarcoma - Online Support Group

Concern for pulmonary metastases

Hi Mito. Thank you :blush: The initial tumour was on my foot and was 4cm. They said it was grade 3, I can’t remember the grade exactly. But at that time my lung scans were all clear. I am in Canada and have been consulting a sarcoma specialist. I still haven’t got a chance to talk to to the doctor yet, hopefully today. I had the scans and out of scanxiety I got the results from my family doctor even before my specialist calling me. I am waiting to hear back from them today to see what the plan is.

You are absolutely right and prayer brings victory :blush: I will keep you all updated.

I am sorry to hear about the nodules. I know it is very worrying . My daughter has nodules similar in size since her very first CT scan in August 2017. I know it is hard, there has not been a day that goes by that I don’t think about that. . They only way to fight it is to keep the same positive attitude that you had on this since the very beginning. You are are SuperGirl and since you joined the forum you have been very positive inspiration and you need to stay that way to fight this. Life is too short to waste it. I am letting my girl have as much fun as she can and you should do the same for you so you. Some people manage to live with METS for a very long time but you have to be very proactive.

There are a lot of treatments but probably your nodules are still too small for anything as well but you need to probably scan them again ASAP. I would recommend no more than 6 weeks even if you have to pay out of pocket for the scan just to make sure they are not growing rapidly. This things may have always been there but were too small for the CT Scan to pick up. Make sure they use 1.5 mm slices when they do your scans. Some places do 5 mm and that is not enough resolution.

In my daughter’s case after 6 scans they are still about the same in size so they are not recommending anything yet because they are too small for any of the treatments. I wanted to put her on Chemo right away but the 5 oncologist that saw her case in the first 3-4 months at several of the top hospitals in the nation said no. Now I am seeing just 2 oncologist to make sure I get more than one point of view. One lung Dr. wanted to open her chest wall and attempt with her hand to take a couple of the nodules that were close to the lung wall out. I decided to go against that.

Supposedly chemo is more effective when they are growing fast than when they are slow growing. Right now I don’t want to disturb the nodules and decided let my daughter enjoy her life as much as she can. For you, getting an idea if they are aggressive or not will be good to see what is the best action.

The treatments that I am aware off are (not in any specific order)

-Radiation (several types of radiation)
-Chemo with Immunotherapy (new trial at Miami I just heard a few weeks ago)
-Chemo with Votrient (fairly recent to try more than one drug at the same time)
-Votrient alone
-A Miracle from God (they do happen)

Some of the nodules shrink for a time with Chemo but my understanding is that only removal gets rid of them completely but I have seen people on this forum claim that proton beam radiation worked on a specific nodule. When on any of the radiation treatments you have to also be careful. When they radiate the body try to heal itself. So tumors that are not being radiated or don’t show in scan yet may benefit from the healing process and grow while the tumor being radiated shrinks. Therefore if you do radiation, you still want to be scanned regularly as well.

Make sure that you send your tumor from the leg for analysis. I tried foundation one but unfortunately there was not enough tumor left for them to do the analysis. That will help to determine which trials you are able to join. or if new treatments pop up the treatments may be related to a particular gene.

I hope this helps. I will pray for you as I do for my daughter and everyone else fighting this disease.

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Hi I’m so sorry to hear you have lung nodules i read a book written by a woman who had synovial sarcoma and lung mets. I read that she used cryoablation which appears to have worked well for her - this is something that we would seriously consider. All the best!

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Hi Supergirl, How are you doing? Did you meet Dr?

Hello Everyone, happy news to share :blush: I did meet with my specialist, he told me there was nothing to worry as the modules are very tiny with the biggest being 4.5mm. He said looks like this is from the heavy cold and infection I had during the time of my scanning. They are going to monitor me and scheduled me for another CT in the March - three months from this one. He said he wasn’t expecting Mets to happen considering the wide margin surgery amputation and the high dose chemo I underwent after that. I am very positive and I am sure my next scan would be clear. I will keep you all updated.
Thank you all for remembering me and my prayers and wishes to all of you :blush:

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That’s so great to hear. God bless you🙏

Thank You Mito :slight_smile: Remembering everyone in prayers. The initial report before seeing the doctor was however a wake up call for me to have a healthy lifestyle. I have to focus more on being active and eating healthy. I am such a foodie and eating healthy is my most toughest part. Anyhow i will give it my best. Does anyone of you follow a particular diet plan? exercise?

Updates… After my chest CT in dec 2018 I did another one on March 2019. Out of The four nodules which were there in Dec CT, two grew from 3mm to 5mm and 5mm to 6mm. I haven’t seen my main doctor yet, not quite sure about how serious this is and what the next steps would be! I am positive and pretty sure that this will be vanished in my next CT! Totally not up for another round of chemo !

Thx for the update, hope there’s nothing to worry about this mild change. When will you get to see your main Dr. Please update us.

With prayers

Hello Team. UPDATES. I met with my doctor today. Not so great news. He said the nodules 3 of them have grown in the last three months the biggest being 7mm. They are going to discuss about me this Monday and will let me know if it’s possible to have a surgery or do chemo. He said I could go for second opinions else where too to make sure what’s the best option. I am kind of nervous but I am fine at the same time lol! I wish they can remove it with a surgery. I know it’s not a walk in the park to have a part of the lung removed, it’s just that the nodules are too small. Is there anyone here with a similar situation or with any updates advises ? Thoughts greatly appreciated.
Also tomorrow marks my 2 year ampuverssary!
Looking forward to hear more about Mets and treatments.

Have you considered ablation?

Hello. No I haven’t thought about ablation. I honestly do not know much either. Never thought about lung Mets at all in the last two years. Have to start my research and find out what would be best.

UPDATES… I have a PET scan scheduled tomorrow. I have no idea how a PET scan works, but I will be fine :blush: On Monday I am meeting with a Thoracic Surgeon. Waiting to complete the PET scan and to surprise the doctors with the miracle that’s going to happen. Nothing is impossible as my Lord is by my side. Cheers

Oh Supergirl I will be praying for you tomorrow. I am asking God to give you the kindest and most patient of technicians to help you through your pet scan. The Lord will fight for you. You need only be still! He is faithful even in the scariest of times.

God bless you!


Elizabeth Wehmann

Elizabeth, I really appreciate the response, words like these gives me the strength to keep going. Yes, pls keep me in prayers. :blush:

Praying for you dear…
Pet scan is nothing to be worried of… Just pray that the results should be good.
Prayers do miracles :pray:

PET works by scanning how fast cells take up a radioactive sugar (cancer eats fast and a lot) - easy scan. Keep fighting - you can do whatever it takes. Will be praying for you.

Thank you Mito and Jimlaw. This forum is amazing, the support we get here is the best and can’t ask for more :blush: I will keep you all posted.

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UPDATES… Not good news! I received the PET Scan results and it shows metabolic activity in those lung nodules. Also the worst part is that the report say there is hypermetabolic mass seen on my amputated stump. I have been having pain wear my prosthesis and was assuming (should never have) that it was due to my prosthetic leg not fitting well. I am seeing my oncologist today. My thoracic surgeon had mentioned that they would not consider a lung surgery if this has spread elsewhere. I am not quite sure what the mass is in my stump, will need a biopsy probably. I have never heard of tumor coming back on the amputated stump, hopefully it is some inflation.
Please keep me in prayers :slight_smile:

I am very sorry you are going thru this. I am certainly keeping you in my prayers. I recommend you find another opinion and try to get radiation or the nodules removed by a different hospital. That thoracic surgeon does not seem to be giving you good advice. Even if it is on the leg again which I doubt it since you have amputation there is no reason to wait to get treatments in the lungs.

At the same time don’t let any of this affect your positive attitude! Enjoy every day as it is a blessing.