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Synovial Sarcoma - Online Support Group

Every one's story is so unique, so here is mine. (survivors who chose no treatment, please read)


#1

Every one's story is so unique, so here is mine.

My name is Michelle, I am 21 years old.

About five years ago, I began to feel an annoying dull pain near my ankle. Everyone thought I was faking it to get out of high school PE which I did kind of fake at times :p

Anyway, being who I am, I wanted to know what it was. So I went to my pediatrician and told him what I felt. Like any other unknowledgeable doctor I was about to see, I got a "tendinitis" "unknown" "normal". About ten doctors to be exact actually. The pain increased and was sooo painful to the lightest tough.

Finally doctor #11 (an orthopedic surgeon) decided to do an MRI again (after I'd done one two years prior which was "normal").

And there it was, that nasty white dot that had caused me such excruciating pain for the past 4 years.


The doctor was very relaxed and had no doubt that this tumor was benign. We scheduled to have it taken out because it was very painful to me.

In September, I had the tumor removed and in October I received the more horrific call of my life.

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I explain my full story on my blog if you'd like more details - https://michellevscancer.wordpress.com

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Fast forwarding. I went to be seen by my first oncologist. And frankly, I think she ruined my entire perspective of that medical institution. She was cold, to the point, and laid it out like it was. I believe the first thing she did was starting spitting questions at me like she had no time and was in and out of there in 10 mins. During the two meetings I was with her, she mentioned chemo (not her field), radiation(not her field), and amputation which was her top choice (her field). I thought the idea was absolutely absurd. Having little to no knowledge I now see why people do it, but I still do not think this is an option for me.

I was scanned immediately after my first meeting with this doctor. My results came back perfect, there was no sign of metastasis. Yet she still seemed very pessimistic.

I was then referred to several oncologists which is where I saw a new personality from each one. The surgical oncologist thought amputation was absurd as well, and didn't even want to do a biopsy of my lymph nodes like the first doctor wanted.

I saw a radiation oncologist that made me feel like I was going to drop dead if I didn't do radiation..Yet the burns may be so severe I might not be able to walk anyway..

At this point I had practically made up my mind that I wasn't going to agree to any of this treatment that seemed to have worse side affects than what its treating. I am a strong believer in natural medicine and the power of the body and immune system. So I declined it all.

Now I'm stuck. I have made up my mind about treatment but I haven't been able to deal with my anxiety that it may have come back or its spreading. Its so bad to the point where my only remedy is cannabis and ignoring that I am 2 months late for my scan.

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I guess I'm seeking information on how any of you cope with the anxiety? I can't believe how long this disease can stay in remission then reoccur. So I can't imagine living in fear for the next 10 years.

And have any of you had it never come back after using hollistic methods? or nothing at all?

Thanks!

-Michelle


#2

Knowledge is the only cure for anxiety.

Knowing what you need to face and coping with it s the only way forward. Smoking pot and self medicating for anxiety solves nothing. Trust me - I know. I was just informed last Thursday that I need to have lung surgery for the 4th time. Coughing up blood is not fun, nor can it be ignored. Seek treatment. Find a doctor that you trust and move on with your life. I was in remission for many years and was even pronounced cured after 10. At 15 years it was in both lungs. At 24 years into this I'm still battling and have an incredible family. Your life is in front of you.

Grab it while you have the chance.


#3

You had a bad experience with the first center you went to and it is understandable you do not want to go back there but before giving up on conventional treatment, you may want to get a few more opinions. Burying your head in the sand like an ostrich is not going to solve your problem unfortunately.


#4

I feel you. No surgery, radiation, or chemo for me at all, and am still refusing the mid-bicep left arm amputation they are offering me for a supposed "cure" whatever that means to the doctors. You can see I am still highly skeptical of all this. And this is after being diagnosed since November 2013 with several years before of misdiagnosis, including tendinitis. Pursued some alternatives, which have helped me keep it contained and not spread.

I also self medicated with cannabis (which is fantastic), but have been off it for the last 3 weeks to clear my head a bit after this happened to me...

(from my wife's blog, http://livingwithsynovialsarcoma.blogspot.com/2015/04/side-effects....)

"In the last couple of weeks, John was having a hard time making simple decisions, he was tired all the time, and he was very depressed. He had not been acting himself, and it was steadily getting worse and worse. We had an appointment with his psychiatrist, who agreed that it was a good idea for John to seek intensive treatment from professionals, and so John admitted himself into a psychiatric hospital. They determined that at least one of the medications that he was taking for his alternative treatment was the major cause for his mood and behavior changes. Here is what John had to say in the Facebook group last week:

"Friends, hello from [the] Hospital. I admitted myself last week because the Interferon that I have been taking as part of my alternative cancer treatment put me into a dangerous depression that I was starting to lose myself in. Here they can monitor me as I get off the Interferon so we can avoid this side effect in the future. The doctors here believe the Interferon has had a huge negative effect on my mood and behavior lately by exacerbating my already existing social anxiety, depression, and problems focusing. Struggling with even the smallest decisions in daily life, and getting argumentative with rapid speech that hits you like taking a drink from a fire hose, are just a few examples. Just yesterday my lovely wife...compared my recent eccentric behavior to that of Woody Allen on a bad day for him. She quickly pointed out that, unlike Woody, I can't quite pull it off. That kind of manic behavior is just not sustainable or healthy at all. I'm already much better after a week off the Interferon and should be able to get back home next week. All of this has been a sobering reminder that my mental health should not be neglected while maintaining my physical health. Too often the mental health aspect has been overlooked in cancer treatment. It feels good to finally be getting them more in sync."

The days that John was in the hospital were tough, but I knew that he made the right decision. He was able to recover quickly, and was released a couple of days ago. John had a very positive experience at the hospital. He is now in the day program there, where they will continue to monitor him and adjust his medications accordingly. He will transition out of the day program and then follow up regularly so that we can make sure this doesn't happen again."


#5

Michelle:

I'm so sorry you're dealing with this. My 24 year-old-son Drake also had synovial sarcoma. Twice.

First of all, I suggest getting as far from that first doctor as possible. Run. Then surround yourself with medical professionals who give you hope and are truly dedicated to your healing. It's very important to go to a Sarcoma Center like UCLA or Cedars Sinai, where they know this disease intimately.

Like you, we live in San Diego. When my son's cancer came back six years after he was first diagnosed at age 17, he was treated at UCLA in the Young Adult section (which was basically adjunct to the kids ward there but the nurses are much nicer and he didn't have to be surrounded by people three times his age). Dr. Noah Federman was his kind and supportive oncologist and he's has dealt with A LOT of synovial sarcoma patients. Most oncologists have never treated SS in their entire medical careers. It's too rare. I honestly believe that if my son had been treated there the first time, they would have been more attuned to the intensity of treatments needed to keep it from back...and wouldn't have stopped scanning him like Children's Hospital and Scripps did. I don't necessarily believe in the effectiveness of chemo (3 percent?), but I would recommend surgery, if needed to get positive margins (they have the great surgeons at UCLA) ,as well as doing proton radiation here in San Diego, which targets only the cancer cells and not the healthy tissues.

This disease is no joke and to fight it effectively you must be positive, proactive and determined. My family is VERY into integrated medicine and were doing CBD therapy along with conventional treatment. My son has since changed his diet dramatically and is now doing everything he can to get his body to kill off any remaining cells. I also suggest reading the book "Radical Remission" to learn more about ways people have used alternative methods effectively. But I definitely agree with Elodie. Please don't underestimate this high grade cancer or think you can avoid going at it with everything you've got. To quell the anxiety I believe in focusing on what you want, not what you fear. I just knew I wanted him to see the best experts in this disease and to make the most of every day in the interim. We celebrated the milestones as he went through and decorated his hospital room like a beach resort complete with tiki lights. Surround yourself with positive people, watch funny movies and read empowering books.

I'm happy to talk with you or put you in touch with my son, Drake, should you want to talk with him. We can also suggest some great services for young adults going through cancer, including the wonderful Nikolas Ritchel Foundation, which sent our family to Florida for a respite from the disease. Sending you hugs and healing thoughts.

Deborah


#6

Michelle, Elodie, Jim, and Deborah are giving you good advice. Elodie has moderated here for years and has seen the stories and the outcomes of everyone who comes through this site, including a lot of people who did not pursue proper treatment and regretted it later.

Please note that there is a rule about not mentioning institutions or hospitals by name in a negative context.

I wish you the best in seeking and obtaining proper treatment for your disease. Please keep us posted.


#7

Hi Michelle,

Our stories are very similiar up until the diagnosis and I've had my share of "bad" doctor, too. Having a good relationship with your doctor, for me, is something really important as you are trusting them with your life in some way. I've been blessed enough to have found the one.

As for the fear of our cancer coming back, I went through rounds of chemo and radiation, plus surgery and I'm still afraid. I suggest you go see a shrink to help you deal with it. It worked for me. I found it really hard to move forward with my life because of the fear of recurrence, I couldn't concentrate on my college classes, didn't wanna go out, and such, but I've learned to live with the possibility of it coming back, I guess. I won't let cancer stop me from living my live.

Wishing you the best,

Ale.


#8

Coping with anxiety is difficult. I'm a life-long sufferer of anxiety. My brother passed away from synovial sarcoma a few weeks ago after fighting for 2 years. His passing has left me very anxious. It's different for everyone, but I'll share what I've used to deal with anxiety.

1) Weed helps a lot. It completely removes my anxiety. The problem is it isn't a long-term solution, and it leaves you zoned out and prevents clear thinking.

2) Xanax helps the most for me. It keeps me calm without completely zonking me out like weed.

3) Do what you love with who you love, as much as your illness allows. I guess that goes without saying.

4) Trying to get a sense of control over your situation is helpful. Learn about your condition, ask questions, research, find second opinions, work hard or ask others to work for you to to gain knowledge. That knowledge will create more anxiety, but that's outweighed by the greater sense of control you feel over your fight.

My brother used some holistic / naturopathic methods. Nothing worked. Neither did any conventional treatment. I'm not a doctor but from what I know there isn't any medical evidence to support naturopathy. I personally feel that it robs your time and energy that's better suited to more practical solutions.


#9

hey there Michelle. doctors are morons. put me in pt and had me squishin my tumor around with a rolling pin. i too decided to look for natural treatments. that led me to fungi and mushrooms.


#10

Check out chrisbeatcancer.com His blog is so inspiring and calming. Check him out. I think you’ll find comfort in him. It’s all about perspective- He may change yours. :slight_smile: I’m sending you Big hugs and lots of strength. People do survive this, why can’t you be one of them?!


#11

Update: hi everyone, it’s been a year since my last scan… My anxiety and depression worsened and have truly been the real disease here but I am doing my best to pull through it. I still feel 100% healthy and am confident to be still in remission.
Although I’m still very reluctant to trying any conventional treatments I’m being seen by the Sarcoma Center at Stanford next week where we will see where I’m at with a scan I’m sure. I’ll post updates soon. Thanks!


#12

Fear and worry can be so crippling, that it is almost like cancer in and of itself. Try to do the things you know to do. Don’t put off your scans. That’s the only way you will know if you are healthy. Try to take your focus off your cicumstances by helping someone else in need. Start small, get to know their story (because we all have a story right) and it will help remind you that you are not alone, that others have bad things they’re dealing with in their lives too, and sometimes even worse. It will remind you of how blessed you are even in the midst of your storm.