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Nine year old lump in thigh--so scared

HelloStar
Posts: 1
Joined: Jul 2014

Hi all,

I'm so frightened and upset: I have had a lump on the front of my left thigh for almost nine years.  It was more "fatty" before but I noticed in the past few weeks, it has gotten less superficial and more firm.  It's also quite large--I think it is the size of the palm of my hand.  I'm also noticing a dull muscle pain and discomfort.  

Nine years ago, I pointed out the mass to my doctor who dismissed it.  Over the years I would sometimes mention this lump but doctors were always dismissive.  For some reason, this past weekend, something clicked in my head and I googled.  My heart fell down to my shoes.  I have a son who just turned two and am a care-taker to two elderly parents.  I didn't know how serious this could be.

I went to see two doctors--one of whom dismissed it again.  The second doctor ordered an X ray, which showed nothing.  On my own, I pursued an appointment with Dr. Samuel Singer at Memorial Sloan Kettering because I just feel like something isn't right.

Some questions:

-Do sarcomas show up on x-rays at all?

-What were some symptoms people had with regards to a leg tumor?

-Is it possible that this is just a benign condition?  If so, what can it be?  I'm panicking because the only information that comes up for large lump thigh is cancer.

 

Any words or insight would be greatly, greatly appreciated...

natmcg
Posts: 123
Joined: Jun 2012

Hi,

My sacoma is probably totaly different to what you may or may not be dealinf with. If you havnt got any answers yet (sure hope you have) My advise would be find a Dr that will get a biopsy, only way to be sure.

Good luck.

PS? Not cancer till a Dr says it is.!

swcoody
Posts: 3
Joined: Aug 2014

I am going through something like this also. Could you update me with what you find out. I have an appointment with a Sarcoma specialist next week

PLEOMORPHIC SARCOMA
Posts: 8
Joined: Dec 2014

What happened?

PLEOMORPHIC SARCOMA
Posts: 8
Joined: Dec 2014

MRI are best for finding Sarcomas, even then only good well trained eyes will spot small ones.  X-ray is of no use.  That hospital is considered one of the best for cancer treament.

NO biopsy.  Just take it out in one big chunk.  

 

Let me know what the pathology report says AFTER the thing is removed.  I wish the best.

 

 

 

Jillron
Posts: 1
Joined: Nov 2016

HelloStar,

I'm curious as to what the outcome was to all of this? I was diagnosed with synovial sarcoma in my left thigh a month ago and Dr Singer at Memorial Sloan Kettering Cancer Center in NY just had it  surgically removed. It would be great to connect and hear how you're doing. Or anyone reading this that is in the area - please reach out! Jjancko@gmail.com

 

Although living in California for the past 9 years, the closest treatment center was USC (a 5 hour drive) so it was no question that my family back in NY wanted me to be seen at Sloan and am fortunate enough to have the amazing Dr Singer as my oncologist. I highly recommend people diagnosed with sarcoma to seek out oncologists who deal specifically with sarcomas and would recommend Dr Singer and Sloan Kettering Cancer Center to anyone in the Northeast. THEY ARE THE BEST! He removed the tumor last Monday with clean margins and no treatments will be necessary. Dr Singer knew exactly what kind of cancer I had just by looking at the tumor and pathology confirmed it to be synovial sarcoma (my previous biopsy results indicated fibrosarcoma but we knew that diagnosis may change).

 

In just 3 weeks I went from being a healthy, active normal person, to learning that I've had cancer for maybe half my life (although my oncologist team guessed 5 years), to walking into a cancer hospital as a patient who doesn't feel sick, to having a scary surgery to remove a large chunk of tissue, fat and muscle surrounding my tumor, to WALKING out of MSKCC 2 days later, CANCER FREE! I feel like I hit the lottery. Not only am I cancer free, but for the first time since I can remember, I'm no longer in pain either. I don't know how I got so lucky, and part of me feels like there is still cancer running through my body. Cancer does run on my dads side of the family, but I'm 99% certain that I got mine from trauma that my cells overreacted to repair - personal theory.

 

Here's my long story, similar to others, how I experienced pain for years that was dismissed as nothing, that turned out to be cancer.

 

I've had pain in my leg for literally half my life. When I was 16, a friend punched me in the leg (goofing around) and I recall having a massive bruise over most of my outer left thigh that went away just like any other bruise. I'm 31 now and for half of my life, I felt excruciating pain, due to what I always assumed was a damaged nerve, misfiring and interpretting pain even with the SLIGHTEST touch. My parents dismissed my pain for several years, assuming I was complaining over nothing. So I just went on with life, unconsciously guarding my leg from being bumped.

 

5 years ago and 10 years later, my friend picked me up, wrapping his arms right around that sensitive spot and I just about died from pain. I never let anyone touch that spot! Everything slowly got worse from there - increased pain, larger area of sensitivity, and constant throbbing from my left thigh throughout the entire leg. I began seriously seeking help from doctors and was referred to orthopedists who refused to operate or even do any imaging, and finally a neurologist  who prescribed me antidepressants to treat a localized pain! What I learned was that no one wants to deal with nerve pain and I gave up hope for another 4 years - I accepted this pain was something I would always have to live with.

 

Fast forward to late March of this year - I was snowboarding and took a 6 foot drop to a flat landing. I never hit my leg but the impact felt like electricity was running through me - my leg was in unbearable pain and over the next few weeks a lump grew rapidly in that sore spot on my leg and I was unable to do anything high impact. But this was great, because I finally was in enough pain to be taken seriously, and with something visible to show for it!

After about 3 weeks without the pain dulling, it was my cat jumping on that tender spot that prompted an ER visit with my first ever XRay (first ever image, actually). They saw a small area of calcification that was diagnosed as myositis ossification. Then it was a matter of getting health insurance - it's a nightmare in CA trying to get Obamacare if you're broke but not poor. I finally got in to see an orthopedist. He wanted an MRI done to see what he was looking at (which took 6 weeks for my insurance company to approve), and shared his findings with colleagues in various fields including an oncologist at USC who was concerned the lump was cancerous. I laughed at the concern - I've been in pain half of my life and would definitely say I'm in better health than most people!

 

That minimal concern from one oncologist, who I never even met, saved my life. My orthopedist was concerned that in the "rare' event that it came back as cancer, he wanted the surgery done right once and only once. We did a core biopsy to determine what the lump was made out of - the worst pain I have ever felt but they were able to detect I indeed had a sarcoma.  The news was a shock - I'm not sick! But the fact that I spent 15 years in pain was scary to say the least. Had my orthopedist not been as knowledgeable and concerned, and just taken the lump out and biopsied it after, I'm certain I  would have been on a completely different and much longer road to recovery.

 

I understand that a lot of people's stories have not been as celebratory, but I want to encourage others that there is hope and not every cancer diagnosis is a death sentence. For me, this has brought me back to my family which is a whole other issue that I'll have to work through to get through this. Probably a long time coming. I would say I've been a loner most of my life, but cancer is one thing that no one should go through alone. Find people that support you in the ways that you need it, and hold onto relationships that are dear to you. That's the best way to get through this. Thanks for listening and I hope everyone out there is able to find peace within their own struggles.

 

All the best,

Jill

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