Sandra's Story

Sandra

Sandra was 44 when she was diagnosed with a low grade soft tissue sarcoma at the thigh. She had radiation therapy and surgery.

In early 2009, I felt my right thigh was larger than my left and that the leg was "heavier." I visited my family doctor and he told me nothing appeared wrong. So figured it was in my head and went on with life. I also had been having problems with my leg when getting out of my car after long rides, but I attributed that to getting older. All in all, 2009 eventually turned out to be a year of loss for me. My older brother died unexpectedly in the summer, and I had a hysterectomy in the fall. When New Year’s Eve came around, I was just thankful to be out with the old and in with the new. 

Little did I know that 2010 would be one of those life-altering years. I was looking forward to a vacation planned around my birthday in April to Vegas to see Cher, which was a lifelong dream for me (no laughing please). My business partner and I were moving toward going our separate ways (as friends). By spring 2010, I had lost 30 pounds and was in getting into shape. That is when the trouble really started. After losing all the weight, the difference in my thigh size from right to left became more noticeable, at which point my husband convinced me to see our orthopedist.

I consistently thank this doctor for saving my life because he ordered an MRI. Glowing on the image was a giant tumor. My hero doctor said he knew what it was not (a benign lipoma) and said he was referring me to an orthopedic oncologist....ON-COL-OGIST, a word that literally sent chills down my spine and echoed in my head for several minutes even with the doctor still talking to me. I only partially heard what he said to me after that. In April 2010, right before my 45th birthday, my journey began…I made an appointment with the new doctor for mid-May and went on my trip to Vegas to be "normal," if just for a week. I spent that week with my brother, and Cher was great.

Upon returning, the Internet searches commenced. My first few brought up sarcoma in dogs, which was not encouraging. This is when I realized the rarity of sarcoma.  People suggested I stop surfing the net, but I needed to know the worst-case scenario. One friend pointed out that it was death.  Well, yeah, but I meant the worst-case scenario where I lose my leg (though planning for death was right up there). I had figured out in my head a plan for each scenario, from the limb sparing surgery with the giant scar, to choosing a prosthetic leg online and figuring out how I was going to pay to replace it every few years when it wore out, to lining up things to make sure everyone was ok after I died. Was it needless worry? Perhaps, but having a plan for each scenario helped calm me somehow, even though it appeared to drive everyone else crazy. 

What followed was the meeting with my new doctor and two different biopsies. The needle biopsy came first, the results of which proved inconclusive. I was then scheduled for an incisional biopsy, the result of which was high-grade sarcoma.  The hospital lab then sent my specimen onto another lab for a second opinion (my tumor specimen did more traveling than I did). After almost two months of waiting as the University of Florida performed further testing, I finally got a diagnosis of low-grade soft-tissue sarcoma or solitary fibrous tumor as the Florida pathologist called it in an email to me.  Why did the pathologist contact me directly? He responded to my email after I tracked him down and emailed him for an update because the waiting was pure torture. My surgeon’s office was obviously tired of me calling but was not getting on the horn to follow-up, so I took matters into my own hands. I will never understand why medical professionals do not understand that waiting to find out what is wrong is worse than knowing what is wrong – my hope is that one day this will change.

Once I got a diagnosis and was moving forward, I felt some relief. My orthopedic oncologist suggested pre-surgical radiation to shrink the tumor, followed by surgery. I choose a cancer center that was nearer to home for the radiation therapy. After verifying the plan of action was consistent with current protocols (yes, thank you Internet), I put my life in the hands of my medical professionals and God. I have been very fortunate to have both of these doctors within an hour of my home. The orthopedic oncologist is only one of two in the state and is located an hour away.  The radiation oncologist works at a well-respected cancer treatment facility that has a "branch" only 10 minutes from my home.

Treatment

In early July 2010 I started down the road of five weeks of radiation. Upon arriving at the facility I was shown a short movie, the name of which I do not remember, but it had to do with being diagnosed with cancer. Cancer, what are they talking about, is it me? It literally almost made me vomit.  During the movie my husband sat somewhere that seemed to be a million miles away from me because I do not think he knew what to do. They really should give you a teddy bear or something to hold during that movie. My anxiety was at an all-time high and I felt like running out of the building, but, like many before me, I went with the nurse and met doctor next.

My first reaction to my radiation oncologist was: Oh no, this is not going to work. But he explained the process to me, and in time it turned out we had the same dry sense of humor, and he turned out to be another hero for me. Valium calmed the stress of the first few treatments as well as that of the unknown. Overtime I needed it less and less.  Since my tumor was in the posterior thigh, the radiation affected the back of my leg. Note to self: sitting on a leather car seat that has been heated by the hot southern sun while wearing shorts during radiation treatments is not advisable.  I did not figure that out until I left what felt like a layer of skin stuck to the seat. Another note to self: use a towel!  Most of my side effects, blistering mainly, did not start until after radiation stopped, which they failed to tell me was going to happen so they got to see me an extra visit.  That is when they gave me the Aquaphor to place on the area – would have helped to have it sooner, but live and learn.

Four months into my journey, radiation treatments were completed and I got a month break to heal before my surgery at the end of August. Soon enough the day of surgery was upon me, and frankly I was ready. My husband was surprised at my calmness, but I just wanted the dam tumor out of me (aka my evil twin, as I had been calling it). I had come to terms with the surgery, leaving its outcome to God and my surgeon.

Now, whoever invented the nerve block for the whole leg is a genius; I had absolutely no pain right after surgery because that sucker was numb, as numb could be.  In the recovery room, a nameless nurse became another hero.  She made sure I had a pain pump despite objections from the doctor who had done the nerve block (I could hear the whole conversation). I think the nerve block doctor was doing some sort of pain management study that did not include pain medicine in addition to the nerve block.  Past midnight, the numbness wore off and I was happy to have the pain meds to help me sleep.

The next day, I was able to walk, with pain of course, but I was so happy to still have my leg and walk at all.  I also made sure I used every ounce of pain meds in the pump before discharge as a thank you to that recovery room nurse.  It made me vomit, but it was a victory for patients everywhere!  I was sent home on some pain meds, with a wound vac and an order for home health.  I disliked the wound vac, but think it was critical to my incision healing, which it did quite nicely over time.  I had that thing for a week and it just got in the way of everything; my dog even got tangled up in the tubing at one point.

Through the whole process I had been also seeing a therapist who had given me some tools to cope with my anxiety, which worked.  During this time I felt like my life had stopped but everyone around me continued on as normal.  It was truly a strange time.  Friends and family were curious and supportive but at the same time I do not think wanted to deal with it, or maybe that is just how I felt.  People kept acting normal while what I was going through was not normal – very weird.  

Recovery

CoupleIt took me four months to heal up my leg with the help of some home health and physical therapy. Fortunately, I was in a career that allowed telecommuting and time flexibility, so I was able to work through the whole process, though not as much as I had before. I was just going along with my healing when bam, I said the words "I had cancer" aloud. Talk about making it real, my God I was almost knocked over by reality. What resulted was a deep depression that lasted for about a month or so.  I kept getting the "you should be happy," from friends and family; I knew they were right, but still I had trouble emerging from wherever I was traveling at this time. From what I read now, seems this happens after all treatment ends. The depression felt like it would never go away. It seemed to drag on forever. But with time, some antidepressants, talk therapy, and exercising as much as I could tolerate, I rose above it.

Physically I felt like I had a heaviness holding me down for almost one year exactly after my first radiation treatment. There was nothing any of the doctors could do. Turned out to just be my body’s way of healing, holding me back so I could get better. After that cloud lifted, I felt almost normal again despite the fact that physically, mentally and emotionally I would never be the same again. 

Six months after surgery I had my first post-cancer scans – a chest CT and MRI of my leg. I had anxiety going into the MRI no words can describe.  After four Valium, one taken as I was walking into the room, there was no relief. I got on the table, promised the tech I would not push the emergency button and the machine started.  Well that is when I started getting hot and sweaty, then the heavy breathing started and I wanted to jump off the table. Instead I practiced the relaxation exercises I had learned and used them. They actually worked and I managed to stay put until the test was done. This is what I have since found out is called "scanxiety," and it is no myth. People who have never had cancer cannot seem to conceive it. All I hear is, "but it’s not your whole body going in the machine, it’s only your leg" or "you’ve been through this test before, what’s the problem."  Well, they have no comprehension that it has absolutely nothing to do with the machine, but what may be discovered by radiologist. My God, terror is possibly a word to describe it.

Life Now

After spending over a year all over the place on an emotional roller coaster trying to find my "new normal," at the two-year mark I am starting to finally feel on the right track. I have spun my cancer journey to a mission of making myself a better person. My new goals are to be selfless, full of faith, and to shift my priorities in general to what is important in life – family, friends and using my talents to help others. In 2011, I started training for a 5K, which I ran in January 2012 followed by a 10K and another 5K.  My pain is managed with massage therapy and the occasional non-narcotic pain pill.  I became more involved with my church by training for the Stephen Ministry program, volunteering to be the Financial Secretary and coordinating a Financial Peace University program in Fall 2012 (helping people get debt-free). My career is right where I want it to be also. I am enjoying what I do with flexibility and the ability to telecommute.  

Thoughts for New Patients

It is so important to have doctors you are comfortable with and trust. After all, your life is now in their hands. If something doesn't feel right, get another opinion.

I must say, the waiting for a diagnosis was the worst part of my journey. I encourage each and every patient to be their own advocate, even if it comes down to tracking down and contacting pathologists on your own! Doctors do not give names, but they do give hints, so make sure you or a partner in crime listens carefully.

The emotional roller coaster I stepped on after treatment was normal and slowed down eventually. It takes time to get to the "new normal." It is all a process. The best word to describe the whole journey is surreal.

As I am approaching my two-year scans, after having three that showed no evidence of sarcoma or metastasis, my anxiety has decreased, but it is still there and probably always will be. Just know it is normal and there is absolutely nothing wrong with how you are feeling. 

And as type up my story I realize a theme has emerged – fight or flight.  Please always choose to fight. Something my radiation oncologist said to me my last visit has stuck with me. He called out "Thanks for coming."  That told me that some people do not return for follow-up for whatever reason. Please go through with all your follow-up visits as directed. Do not let fear dictate the wrong path, because at least if something is found, more often than not it will be early enough to treat. You are stronger than you think.

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Iain Ings 07/08/2014 09:50 pm
Hi Sandra, a great and uplifting story when I have been feeling really down. I have just be diagnosed with a malignant soft tissue fibrous tumor on my L4/L5 nerves where they exit the spine. Unfortunately after 2 attempted ops and 12 months, they have only now realised it is malignant adn I am having to deal with the fact that my particular one is also showing aggregsive tendencies. It has also taken 2 months to confirm the diagnosis as samples ahd to be sent to the UK and USA from here in New Zealand. I ahve set myself a target of seeing the next 3 years and then 5 years, with my BHAG being 10 years so that at least IO cna see my children (11yrs and 3yrs) at least grow into young adults. Keep positive and so will I!
Beth Edwards 29/06/2014 12:58 pm
Just diagnosed with solitary fibrous tumor in theft thigh that the pathologist said he is "gonna call benign" it took forever, or at least it seemed so, 1week to hear anything, and I called them. Now I am another week out and waiting on o surgery date. My "friend" as I call my tumor, is causing a good amount of pain and weakness. Just wish everyone would be prompt and upfront with information... Thank you for sharing your story, it is open and honest. I am a thyroid cancer survivor too, and the follow up tests and scans definitely cause more anxiety than the initial diagnosis.
Carol 11/06/2014 06:12 am
Hi, Sandra. I am so glad that I read your story. It helps me to understand what happened to my mother. She had sarcoma of the breast. I always wondered why she never saw a Dr. when she found a tumor (her mother had breast cancer in both breasts, but hers was carcinoma). Now, I realize my mother's breast must have just become larger than the other (rather than finding a lump). By the time she did go to her doctor, the cancer had metasticized. She only lived another nine months. She was 67 years old.
I am so happy that you went to your physician after noticing something was different. This is such an important lesson. Please, please keep telling your story. This is a very nasty cancer and most people would never think about seeing a doctor because one leg (or one breast) has started growing bigger than the other until it is far too late. Because of your story, I will not make the same mstake that my mother made.
I wish you all the best. God Bless You.
Ann 08/05/2014 11:29 pm
Thanks for your story. Yours is the only one that kind of helps me.

I have a similar thing symptom-wise: my left thigh is mcuh larger than my right and my left leg seems "heavier"...I am aware of it at all times unlike my other thigh. All times. It bothers me. I have wanted to go to the doctor to get it checked out ever so much, but then think he will think I am just a crazy lady worrying about just a fat thigh. ("It's called fat, lady.") I guess if you had the guts to go originally, I guess I should get mine checked out. There's no info on the internet for this really!

Thank you for publishing your story.
Greg 22/04/2014 12:56 pm
Sandra, My wife was diagnosed with same tumor (8cm) in the same location 12 years ago...surgically removed followed by 30 rounds of radiation. She was faithful to her annual follow-up exams for 5 yearss as then prescribed by doctors. We recently learned it has come back to her lungs and elsewhere. Please don't ever stop getting everything checked regularly regardless of what they may tell you.

Thanks and best of luck!!

Greg