Talk Shows & Stories : Featured Stories : Jan

Jan: Fibrosarcoma

Recorded January 18, 2002

Listen With 17 minutes, 31 seconds.

Username: Janka

Go to Janka's personal Web page

My name is Jan and I'm a survivor. I'm married and I live in Michigan. I'm the proud mother of two grown sons and grandmother of four grandsons. I retired in 1998 at the age of 62. And as many people hope to do after retiring, I was planning on pursuing hobbies, enjoying my family, and doing some traveling to places that I've wanted to visit for a long time but just never quite had the time to fit into a busy schedule. My husband also retired a year after I did with the same hopes in mind. Great! Now we're ready to go for it, or thought we were.

Retirement and Fibrosarcoma

However, in July of 2000, these plans were put on hold due to my having to have lower back surgery for the second time in five years. This wasn't exactly in the original retirement game plan, so I had the surgery and it wasn't an easy recovery. A week after getting out of the hospital I noticed a very large lump behind my left knee. I had no idea what it could be, but it seemed logical at the time anyway, that it must be connected to my recent surgery. Because I had a lot of pain down my leg due to sciatic nerve involvement. The lump wasn't painful to touch or pressure around the edges, so I assumed it would go away as I got better--so much for assumptions.

It was a couple of months later before I finally was back on my feet and it was time to start preparing for the holiday seasons of Thanksgiving and Christmas. I didn't give the lump much thought during that time, actually even forgot about it. Thanksgiving and Christmas came and went with all the normal festivities of the season, but New Year's came in with a bang! Shortly after New Year's 2001, the lump reared its ugly head once more in such proportions that it shocked me. Logic no longer said it was part of the back surgery, so maybe I'd better go see my doctor and see what he thinks. I couldn't really see it too well. Have you ever tried to look at anything directly behind your knee, especially after having back surgery? I can tell you, you aren't going to see much.

I saw my primary care physician, and he thought it might be a Baker's cyst, but it was too big and its placement, about two inches above the back of the knee, was not quite where it should be to fit the Baker's cyst diagnosis. It was also too large for him to do anything about, so he referred me to an orthopedic surgeon. The surgeon said the same thing my other doctor did, but he said he would need a CAT scan of the area so he could see more detail. I went for the CT scan and then back to the surgeon. The only thing that had been determined was that it was a tumor of some kind, and he would have to do a biopsy or complete excision, depending on what he found when he got in there. This was to be an outpatient surgery and was performed about two weeks later. He performed an excision and they were still unable to give the tumor a name. The biopsy excision was then sent to Mayo Clinic for diagnosis. Another few days passed, and I got a call early one morning from the surgeon informing me that the results were back and I had a fibrosarcoma tumor, a malignant cancer of the soft tissue. He wanted me to come into his office, so the treatment could be discussed. He arranged an appointment for me to meet with him in a couple of days.

Coming to Terms with the Diagnosis

I think one of the hardest things I've ever had to do was come to terms with that phone call. It really turned me inside out and upside down, and then spun me around a couple of times for good measure. Disbelief, fear and hoping you misunderstood what he said, all the time knowing that you hadn't misunderstood. I did the normal thing, I guess. I cried a lot, felt sorry for myself. Thank goodness for my husband's broad shoulders. [laughs] I finally got to a point where my next concerns were how am I going to break the news to my family and friends. More tears. Talking about it was difficult. My husband was my support, and even though I knew he was hurting too, we had to face this and get on to whatever the next stage was going to be. That, obviously, was meeting with the doctor to find out about the treatment. I've heard the expression many times about something that happens that it really knocks your socks off. I guess that's as good as any way to describe how you feel.

I had a couple of days before I had to be at my appointment, so I spent a great deal of time glued to the computer and researching every possible website I could find that had information about this cancer that was residing in my leg. I had no idea what it was or could do to me and I had to find out, now. I also wanted to be armed with as much knowledge on the subject that I could absorb in a short time, so that I'd be prepared to talk at least halfway intelligently to my doctors and anyone else who would be treating me. Needless to say, this isn't happy stuff to find out about, but I did come away with enough basic understanding of what I could be faced with, God forbid! I had to focus on the good, but needed to know both sides of the issue. The good news was that it's a treatable cancer and I was still in the early stages of it. Also that it wasn't a fast-growing cancer. Bad news was it could, if not treated, metastasize into my lungs. That made up my mind. Let's go with the treatment.

The next thing that happened was having to find an oncologist orthopedic surgeon that specialized in rare cancers such as fibrosarcoma. That meant I was going to have to travel about 150 miles each way to the University of Michigan in Ann Arbor, to find that specialty. It's an exceptionally fine university and teaching medical facility, and I was scheduled to go for my first appointment in two weeks. That meant I had two more weeks to worry about it, but it also meant I wouldn't be sitting in a doctor's office and x-ray rooms for a while. And maybe I could relax and come to terms with all that was happening so fast to me.

Interestingly enough, even after the first surgery I never had much pain from anything. Yes, my knee was stiff and I was limping a little, but so far, so good, as far as I could see at the moment anyway. I knew I'd better enjoy these moments while I had them because who knew what may be waiting next? Needless to say, the two weeks passed quickly. Before I knew it, my husband and I were in the cancer wing at the University Hospital, sitting in the waiting room with many others; some cases looking so severe it made me almost feel like an imposter sitting there with my sore knee. I would have been ecstatic if someone had been able to give me a Band-Aid and a couple of aspirin and send me home. What a soul-wrenching experience it was to see these men, women, and especially the children, in such varying stages of cancer treatment. It certainly takes your mind off yourself.

Mapping the Course of Treatment: Surgery and Radiation

Next thing I knew, someone called my name and we were in the examination room with the doctor, physician's assistant and nurse, and the doctor is going into great detail to describe the disease to us and where they felt I was in the cancer stage. Depending on where you are classified naturally determines what treatment they will be administering. I would be scheduled for another surgery as soon as they had an opening, assuming I agreed with the treatment that they were proposing. This would be another surgery to remove any remaining tumor and bad cells they could find, which in turn meant going deeper and wider than before and removing quite a bit of skin, muscle and tissue. The tissue would then be resectioned to adjust the appearance of my leg, but of course muscle doesn't grow back.

If they were able to remove everything, I'd be home free. If not, then intensive radiation and possibly chemo to make sure everything was taken care of. The radiation would be approximately for seven weeks, five days a week, and then physical therapy would be needed later to get the leg functioning as normal as possible for the final stage. If I chose to go for the treatment, they said I would stand a 90 percent chance of curing the cancer. If not treated, well, that would be another story altogether, and one I chose not to even consider. Of course I'd go for the treatment, whatever it took.

Having chosen to go for the treatment also meant a lot more x-rays, blood tests, special MRIs, more waiting rooms, more twiddling of the thumbs. Do I sound impatient? Yes, I was. This all takes time, and of course meant the 300-mile round trip to Ann Arbor every time something else was needed. Consequently, the next surgery was scheduled for exactly one month away, April 9th, exactly two months since I'd had the first operation to do the biopsy. They said I'd probably be in the hospital for three or four days, and I'd be in a cast and on crutches for a while afterwards. So there goes any vacation plans for this summer. However, if I'm lucky I'll be home for Easter, and if I'm even luckier, my husband and I will be going out for Easter dinner.

April 9th came around with amazing speed, and we were up very early to drive to the hospital so that we could be there by 11 am with surgery scheduled for 1 pm. Nervous was the name of the game for me that day. I was just anxious to get it over with now. All my family and friends were waiting to hear, and sending me their love and prayers. It's so comforting to know that there's a lot of people who care so much for you. Sometimes you take it so much for granted, its times like this that mean so much and when the support is what you need the most. Of course, my husband is there with me, bearing the brunt of all my trials and tribulations--bless his heart!

Finally the surgery was over, and all the pain I hadn't experienced to this point had certainly ganged up on me and was in full residency and making itself known big-time. I was in a complete leg cast and totally immobilized with all the wires and tubes and paraphernalia that goes with operations. But the good news was the cast would be removed the next day and a soft cast put on to replace it. Bad news is they weren't able to get all the cancer nodules, and I would have to have the seven weeks of radiation. I was hoping to sneak by with just surgery, but no such luck.

Recovery, Radiation and Rehab

Some more good news, though. If I played my cards right, so to speak, I'd be able to go home the next day if I could learn to use the crutches okay, which meant being able to move enough to maneuver out of bed and not get sick doing it. Guess what? You bet I would! The 150 miles home the next day was really pushing it, and boy was it good to arrive home. The only thing better than that was seeing our puppy that had been staying with the neighbors spinning in circles of joy at seeing me home again. Unconditional love, no matter what. It's always so much better to be with your loved ones. Not to mention in your own bed for a good night's sleep, without all the contrivances the hospitals come up with to make sure you stay awake all night. At least I was home for a few weeks recovery before I had to go back for more doctor appointments and chest x-rays, which are a fact of life for me now, every time I see the doctor.

The recovery went well, and I was on crutches for about two weeks and then walking short distances on my own, but the leg was very unstable and weak at best. It seemed to have its own mind; about to walk or not to walk. That seemed to be the question. The cast was removed after two weeks. But due to many nerves being severed in the course of operations, the inside of the leg from my knee to my ankle was numb, and apparently will remain that way. Get used to it; a new fact of life. Good news is I've still got my leg, and [laughing] I'm not complaining.

There seems to be something about the ninth of the month that's been following me around lately. The first surgery was February 9th, the second surgery was April 9th, and now I would be starting my next phase of treatment, radiology, on May 9th. My first appointment was to meet the radiologist who would be handling my radiology treatments, and he explained in detail all this would entail. I had a couple more weeks before they would start. But in the meantime they needed to do the preparation work and construct a mold of my leg that I'd have to have on for the treatments each time they were administered. This would hold me completely still, so there would be no possibility of anything going wrong during the radiation treatments. These people have to be the most precision-oriented people I have ever seen, and thank God they are, otherwise it would be a disaster. They were a great group to work with. I started the treatments on May 21st. I had some discomfort for a few days, burning sensations mostly, and a little nausea, but that went away after about a week. Tiredness, but not extreme. No hair loss except, of course, on my leg.

I was having to stay in Ann Arbor during the week and going home on the weekends due to the distance. So I had plenty of time to read, sleep and watch TV, and talk with the other oncology radiation patients that were staying where I was. It seemed the high point of my days were the radiation treatments. [laughs] That's a tough way to spend what turned out to be eight weeks of therapy. My husband would drive down and pick me up on Fridays and take me back on Monday. But come July 13th, I was a free woman, as they say, hopefully free from cancer and on my way home.

A Profound and Enriching Life Experience

This, without a doubt, has been the most profound time of my life. It has brought me closer to the people in my life, both family and friends, and having their show of love, support and prayers for me. Being able to see my own prayers answered in so many ways through the wide variety of caregivers and new friends I've met and learned so much from while I was undergoing my treatment. I was able to witness the kindness and bravery of so many people while I was there, that if I can return even a small portion of that to someone struggling to deal with this illness, then that is my goal. I have been through a lot in the last year and a half, but so many others have been through a lot more. My prayers go out to them.

My mother was a cancer survivor four different times in her life. She fought bravely, and until now I didn't know how bravely. She passed away at the age of 84, and now I know a lot more about the battle she must have waged on a personal basis that only one who has been there can fully understand. Interestingly enough though, none of the cancers that she had were of the type I experienced. It's been a year now since I discovered the tumor, and I'm still in physical therapy, but hopefully I'll be through with that and on my own within the next month. I've made great strides both physically and mentally, and my leg is getting stronger, and even the limp is gone now. I'll be seeing my oncologist at regular intervals for the next five years, but other than that, I guess you could say I've survived, but the memories will certainly linger on.

If there's anyone who has had or is currently going through this, I would like very much to hear from you. To this point I have only met one other person who has had this same type of cancer. The incredible part is that it turned out to be someone that I had known nearly twenty years ago, that worked where I did. A mutual acquaintance told me that she had been through it, and of course I called her to see how she was doing. Turned out she had been through practically identical things that I had. She, however, had been through it about seven years ago, and now she is doing just fine. That was the most gratifying conversation I'd had in a long time, and certainly gave me something to look forward to.

I know there must be lots of other people out there that have or have had it. It would be wonderful to just talk about it and compare experiences. The one thing that really stands out in my mind is the positive influence that just being able to communicate with other patients can have. Sharing these feelings and experiences has a tremendous therapeutic value. Relating to someone who has also been there provides a lot of support, not only for you but for the other person as well. The more you learn to talk about your experiences, the easier they are to face. God is there for us all, and we surely can be there for each other as well.

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