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My Story... Nine Months After My Diagnosis


#1

In November of 2015, I started having problems breathing and I felt more tired than normal. I went to my GP and she said it sounded like a hiatal hernia. But she wanted to confirm, so she ordered X-rays. From there, she said there was something visible but couldn’t make it out. She ordered a CT scan which showed a 5.25 cm mass on the left side of my chest. We quickly had a biopsy done and it came back spindle cell. It was sent to the Mayo clinic for further evaluation and it came back synovial sarcoma. I also had a pet scan which only showed one tumor and was told I was likely stage 3… (this process occurred within about 4 weeks time) I consider myself very lucky!

I was sent to a CT Surgeon named Dr. Patterson at Wash U here in St. Louis. He said he could remove it without shrinking it but recommended that I speak with Dr. Van Tine, a sarcoma specialist. (also at Wash U) Without getting into much detail, I started chemo right away. (I’m a 41 year old male, married with 3 young children) I was put on a 21 day schedule of ifosfamide, doxorubicin and mesna. After my first cycle I developed plural infusion and was rushed to the hospital via ambulance to drain 650cc’s of fluid. During this visit they took additional scans and the tumor had grown to 5.75 cm. In addition there was another small tumor showing up. I think they called it a Fisher and said the chemo wasn’t working. The on staff doctor told me I was stage 4 and was terminal. It was a terrible Christmas Eve and my wife and I were in tears all night. The next morning the “on staff” oncologist came back to the room and said Dr. Van Tine disagreed with his diagnosis.

The following week I had another CT scan. I was scared to death as to what they might say. To this point in time everything had been terrible news. However, that week was a turning point in my life. Without getting too religious, I did a lot praying and sole searching. The day before I heard my results, I had an overwhelming feeling of peace. That my results would be parallel to the way I felt. I didn’t know what this meant until a few hours later?

So Dr. Van Tine walked in the door and asked me how I was feeling. My response was… A very timid, “I feel good…” He laughed and said, “you better. Your tumor halved. It nearly shrank in half.” I was shocked. Again, more tears… (this must be another symptom of synovial) The next 7 cycles were much less eventful. They were very tough but I managed with the help of my wonderful support group. They have been amazing!

In April I had a thoracotomy, during which they removed part of my left lung and diaphragm. The tumor had shrunk to 1.9 cm. They went in from the back. Through my lat muscle, using forceps to spread/break the ribs and took out the tumor with negative margins. Even though I was given an epidural, it was a new level of pain… Which I still feel as I type this.

The next treatment which occurred only 4 weeks later was proton radiation. Because I had surgery first, Dr. Mchulfsky insisted I do 35 treatments. He said I needed two more weeks to get through the scar tissue from surgery. This has really been a breeze. I’ve had fatigue, trouble swallowing and my incision reopened. On a positive note my hair has started to come back and so has the weight. As I type this I have 6 treatments left.

I’m extremely excited to finish treatment. I realize that this cancer is very dangerous and can come back quickly with a vengeance. But I’m optimistic that I have done everything to the best of my ability. My Doctors have been incredible. I feel very blessed/lucky to this point in time. My first post op scan is September 14th. The following month I have a sarcoma run (which all of you should consider attending or supporting) I think Dr. Van Tine is in charge of it. I think you all know the drill after that, scans for the next 10 years if I’m lucky. I should mention that I will ask them to do a scan of my right arm. I know I sound paranoid but I used to be very active. (Lifting weights 5 days a week) For nearly 6 moths prior to my diagnosis I had pain in my right arm just below the elbow. Strangely enough it went away during chemo but returned after surgery. Granted I have started lifting on a very mild level again. But it is still a little scary.

I look forward to meeting many of you and fighting this terrible disease together. I’m very excited about the new treatments that are in the works. Especially from Adapt Immune. Please feel free to ask any questions, as I did gloss over several areas. I was just trying to keep this to a minimum. :slight_smile:


#2

Great story! You are in good hands with Dr. Van Tine. He is well-known in the sarcoma world. Do mention your issue with your right arm. Although primary lung tumors are possible, they are rare so one should always wonder whether they are really the primaries. Better be safe than sorry. Don’t be afraid to look like an hypochondriac. We all are :wink:


#3

Thank you Elodie. I was hoping you would see my story. You are one of the reasons I joined this group. Your experience and willingness to help/support others is incredible!

This has been such a difficult experience. The the pain and physical dedrgation has been difficult. However, the most challenging is the uncertainty with mets and the potential for reoccurance. I think that’s why I have such high hopes for immunotherapy. When I go in for scans in September, I’m also going to see if my tumor was positive for hla.

I


#4

Thanks for the nice words.
Keep us posted about your situation. It’s a difficult experience but hopefully you can get something positive out of it, a better appreciation of small things in life for example. It’s difficult to deal with anxiety. The best way is to focus on the present and try to make the best of your remission while it lasts. Keep hope alive!


#5

Thank you, that is good advice. I consider every day a gift since my diagnosis. Hopefully my remission lasts forever…

Dr. Van Tine has been very positive about my case which has rubbed off on my outlook. I’m very optimistic about the new treatments on the horizon, and I feel like there are a lot good options currently. I think the key to this disease is catching it early and finding the right Doctors to treat it.

I’ve been looking into changing my diet and adding some supplements. If you have any recommendations I would be grateful to hear them.


#6

I am not an expert in diets and I am not convinced diet makes a big difference in our situation as long as it’s not extreme. But I have to admit I couldn’t help but adjust my diet more than once in the years following my diagnosis, as an experiment. The most dramatic thing I have done, and still doing, is having my last meal at lunch time.


#7

Hello my friend…

Thanks for sharing your story! I also had synovial sarcoma in my lung (upper right lobe) …

I had a right upper lobectomy and by grace of god they were able to remove the tumor with clean margins. I also was able to avoid chemo or radiation, so right now it’s just scans every 2-3 months.

I have alot of pain from my procedure, but I consider my self very lucky and being only 33 I am hoping to be here awhile


#8

Wow, 33… I thought I was too young for this at 41. I hope you stay around a lot longer too! And I think you will…

I’ve had a bone come out of my shoulder, veins stripped from my legs and pulup removed from my noise. But I had no idea how painful this surgery would be? I can’t tell if it’s pain from the removal of lung or diaphragm? Or if it’s pain from tearing the lat muscle or breaking ribs? All I know is the pain I had/have was/is terrible. (Although it’s getting better) I’m over 2 months out and it’s still quite painful and numb in some areas.


#9

Yeah it’s been a crazy 6-8 months! They found a nodule in Jan of this year it was about 1-2 cm, after being mis-diagnosed twice with bronchitis I was finally diagnosed with cancer AKA Synovial Sarcoma two months later…

The tumor had grown from 1-2 cm to like 7-8 by this time and surgery was immediately scheduled, with 6 rounds of chemo to follow. My surgery was 04/11/16 and my sarcoma specialist decided against chemo for now because they were able to obtain clear margins. As you probably know, removing sarcoma with clear margins is the best possible form of treatment

I have been told that I am either “cured” or basically stage 4…throw in the pain from the lobectomy and the anxiety from cancer returning it can be hard to deal with at times. But through it all, I became closer to GOD and have peace that it’s going to be be okay and I consider myself to be very lucky…

But the pain and after effects from my surgery! wow! chest congestion, pain, numbness, etc!

My scans have been clear so far so now it’s about dealing with my pain!..any suggestions?


#10

Your story is similar to mine in several ways. I’m a very conservative person when it comes to most things. However when it comes to my health and well being, my aggressive side pops out. My CT surgeon said he could remove the tumor with clear margins back in November of last year. My oncologist said that would be a huge mistake. Initially he said 6 rounds of chemo and later changed his mind when I got to 6. I ended up having one more. He said the chemo was working. His two points were 1) If it’s killing the cancer you can see, than it’s likely killing the cancer we can’t see. 2) Even though my tumor was only 5.75cm at its smallest point, shrinking it will make it easier to remove. Which will help with recovery. He also said it’s important to radiate it as there is some wiggle room when it comes to margins. He said this disease is microscopic. Which is likely one of the reasons there is such a high metastic/reoccurrence rate. The radiation he said was another line of defense in case the surgery missed anything. Please note I only mention this because of the logic explained to me. I have read of several SS patients who just had surgery and were fine. I have also read about several that have gone through chemo and radiation, where it came back within 6 months. At this point no one really knows what works…

I too have grown closer to God and feel he has a plan for each of us. Recently I have had a couple of suspicious pains in my extremities. Of course sleepless nights follow. Yesterday I had my right arm X rayed. Right now I’m just waiting to hear back from the Doctor.

The best advise I can give is to stay busy. Try to do as much physical activity as possible. Our bodies get used to pain and we start not to notice it less. I like to look at potential treatments if it comes back. As I mentioned above, I’m extremely interested in Adaptimmune and immunotherapy…


#11

Well I understand completely on getting the extremity plain checked out, Sa coma is such a beast it’s best to as aggressive as possible. I just had a clear chest X-Ray weeks ago, I was having chest congestion and coughing up crap that is likely coming from my nose…oh yeah I have major sinus issues on top of everything.

I have my usual CT scan in the next few days which always brings me worry, but I do feel at peace like I am going to be okay. There are some pretty scary Synovial Sarcoma stories out there, but there are also so many stories where people survive.

I say why don’t you and I be the ones who survive to share our story where GOD gets the credit and glory? deal??? haha


#12

Good news, the doctor ordered an X-ray of my right arm and it showed everything was normal. I’m not sure if the X-ray is difinitive, but at least there was no evidence of a problem… If it continues to hurt they will do an mri next month.

I agree, there are a lot of scary stories on this forum. (This is a scary disease) But I feel we hear more about the negatives than the positives. That is one of the reasons I wanted to share my story. Brandon, there is no reason why we shouldn’t represent two more success stories!