That summer I went to sleep over camp. I feel and hit my knee on a rock- no big deal until I got a bump that wouldn’t go away. I had my physical the week after I got home so I mentioned it to our NEW pediatrician. She felt it and kept her hand on it while talking to us. She sent me for an X-ray that day (a Wed), and that night I went to my friends summer home. The doctor called my mom the next day and said I needed an MRI and it needed to be done Friday. I had it done and we received a phone call around 7pm that night saying there was something on the MRI and whatever it was needed to be checked.

An appointment was made for me at Mass General on Monday morning. We went to the appointment- outside the office was a sign that said “orthopedic oncology.” At 13 I had no clue what that meant, but my parents knew. The same day I had a biopsy done and within an hour we had the results that it was osteosarcoma. I went home that night crying, afraid I was going to die. Wednesday I was back at the hospital to get my central line put it and to start chemo.

Treatment: I had 10 weeks of chemo and then an allograft done, then had another 7 months of chemo. What a way to start off my freshman year of high school! Before I started chemo my mom asked about freezing eggs because she knew it could affect fertility, but they told her we needed to think in the now not the future.

Life After Treatment: During a routine CT scan to follow up after chemo they found a cyst on my ovaries-totally unrelated to the cancer. They needed to remove it, and in doing so ended up taking the ovary also. I was told then I would probably never have children. I was devastated. Two years later I found out I was pregnant! I was a miracle and a dream come true. I now have 2 beautiful children 6 and 4. It is hard some days when my knee is bothering me and I can’t get around easily and I can’t really run. It is a constant reminder of what I went through.

Thoughts and Hints for New patients: People tell me all the time they couldn’t do it. You might think that but when you are faced with this you don’t give yourself an option. My biggest thing that helped me was I never let myself get down. I always stayed positive. You have to stay positive and know you are going to get through this!

Osteosarcoma at the distal femur
Date of Diagnosis: July 1996
Age at diagnosis:13
Location:Massachusetts
Surgeon (optional): Dr. Hornicek
Oncologist (optional):Dr. Ebb

He scanned, x-rayed, scoped…you name it, he did it.  On the very last day, he opted to run a bone scan to see if he could pinpoint the reason for my now phantom (as in gone) pain.  During the bone scan, my tumor was found.  Of course the x-ray tech couldn’t tell me that; she simply told me to get it checked as it wasn’t normal.  As a side note…no cause was ever found for the original kidney pain.

Off to the ortho (Dr. Robert Fain) I go…after all, I thought I had a knee problem.  He says, “You have to go to M.D. Anderson.”  I’m in utter disbelief!  For what?  I thought this was just arthritis.

Dr. Fain paves the way for me to get in to M.D. Anderson, where my case is picked up by the Chief of the Sarcoma Clinic, Dr. Robert Benjamin. I’ve come to truly love this man.  More tests.  Everyone who is on the web page knows about the tests.  I’m going to glow & poop in technicolor for the rest of my life!  The bone biopsy is not specific.  They can only tell that it’s a spindle cell sarcoma, not the specific “make & model”.

Treatment: Chemo is begun on 6/30/2000, and my hair is gone three weeks later.  Many rounds of chemo ensue until, in September 20o0, I am scheduled for surgery.

Dr. Kristi Weber is a great doctor, an excellent surgeon & the best cheerleader there is!  She performs an allograph on my right femur.  So now I have a little over 5 inches of someone else’s femur bone in my body.  I’m now to be completely non-weight bearing until the two bone grafts heal.  This ends up being 13 months…bear in mind that I’m an overweight 45 year old woman by this point.

In November 2000, during my monthly appt. Dr. Benjamin comes into my exam room and smiles at me.  For the first time since I’ve been his patient, he is smiling.  I start to cry.  Maybe I’m going to live through this after all. He tells me my tumor is MFH (I’ve have lots of words that fit those initials – can’t put any of them here tho!).  I’m told this type of cancer in the bone in someone my age is very rare.  Woo-hoo, lucky me!  He tells me there will be more chemo, inpatient & outpatient.  And that 2001 will probably suck, but 2002 will be great!  2002!!! Up till this point, no thoughts had strayed that far ahead.

The new, tougher chemo regimen starts and he’s right, it still sucks…until, in April 2001, my bone marrow dictates that there is to be no more chemo.  The other thing that has been dictated is that I have to have another surgery.  The original one has not healed.  This time, my fibula is transplanted to my femur.  The original metal brace is removed & a longer one is put in…along with 13 screws…on an Xray, I look bionic. But I still have my leg.  Since there is no chemo to interfere, the leg finally heals. My gift for my 45th birthday is that I’m allowed to walk on both legs!

Life Now: My other, ongoing gift is that I am here.  I am writing my story.  This month – April 2009 – is my 8th anniversary off chemo.  I’ve had no recurrences. I have come to believe in Guardian Angels (remember that phantom pain?) and the people at M.D. Anderson.  Dr. Weber has moved on to Johns Hopkins and I truly miss seeing her.  There’s just something about the people who save your life that you never get over.

Malignant Fibrous Histiocytoma at the distal femur
Date of Diagnosis: June 2000
Age at diagnosis: 44
Location: Houston, Texas – USA
Surgeon: Kristi Weber
Oncologist: Robert Benjamin

Diagnosis: I first saw my family physician in August feeling soreness around my right knee. He determined I had most likely torn a muscle running and said to take some Advil for a couple of weeks. I was never in a lot of pain, but my knee began to swell and I thought I had better take it seriously. I asked my Dr. to send me off for an MRI. Within a few days I was told they believed I had low grade osteosarcoma. I had never heard of bone cancer before. I have been extremely active and fit my whole life and could not believe it was possible for this to be happening to me. I had to put on a brave face and prepare for what was ahead: many tests. I was off to meet an orthopedic oncologist and had blood work done, x-rays, a chest scan, and a bone scan of my whole body. I was told we would need to proceed with a biopsy in about a week, then plan the surgery from there. No chemo was planned, we caught it early enough. It was a difficult and confusing time. Hard to find answers to all the questions I had running through my head.

Treatment: The biopsy came back as expected- with the tumor being malignant. My surgery was discussed in detail and scheduled for October. I was in surgery for 10 hours, the tumor had wrapped itself around my knee and my femoral vein, and my surgeon spent hours trying to save the vein, but had to eventually “clip it”. I had 8 inches of my femur removed and a full knee replacement. My surgeon used a 3 piece metal prosthetic with a hinged knee. It runs from my upper thigh to my mid calf. Waking up after surgery was horrible. The reality of it all was overwhelming. I was in the hospital for 5 days. I had a family member in my room at all times. The nurses were not attentive and not very sympathetic to the miserable state that I was in. The pain was awful, and I rarely slept. I believe the Dr’s made an effort to try to keep me comfortable.

Recovery: Once I got home things just got worse. I was told I would be on crutches for 3 months, but I was only able to use a walker. My leg felt like it was not part of my body. If I got up to stand, it would “pop” over to one side. If I was lying down it would “jump” up from the couch or bed. My foot was always numb and felt like an ice block. Depression set in as the holidays came around and I was barely able to move about my own home. I was constantly calling my surgeon or being taking to the hospital. There were days at a time when I could not even get out of bed because I had excruciating stabbing pain in my upper thigh (unexplainable really). Sometimes it would take a dozen attempts at sitting until the pain let up enough that I could sit. If I didn’t, I just had to stand up with my walker. Once down, I stayed that way for days until it let up. No one could tell me what was happening. Finally at the 9 month mark, my surgeon did another bone scan and was able to tell me that he believed the metal rod that was inserted into my remaining thigh bone was moving. It was too small. He had hoped I would have had more bone growth around it, but it didn’t happen. I needed to have the upper rod replaced with a larger one. I had this done in August of 2007. In addition to replacing the rod my surgeon cleaned up some scar tissue around my knee. I was in the hospital for 3 days, and this time my experience with the nursing staff was much better. The surgery was also successful.

Life now: I had in-home, out-patient and aquatic therapy during my recovery. I am still actually in recovery. I exercise daily now on my own, but nothing near what I used too. Mainly just lots of stretching, some treadmill, and finally back on my recumbent bike. I went off all my meds a couple of months ago because I wasn’t getting any relief from them for my knee pain. My surgeon gave me a steroid shot a couple days ago and we will see if I can get some relief for a while. There are many things I can’t do with my new leg, but I am still pushing myself everyday to see what new things I can do. My bend will never be more than 90 (feels like 80 to me), stairs are a big challenge, I have a slight limp, and my calf swells from lack of blood flow from the loss of my femoral vein, but I try to keep a positive outlook and see something good in each day.

Thoughts and Hints for Patients: This website has been wonderful. Many others were very scary and had way too much information. Talk to your Dr. and ask questions and press for answers. Know you are not alone.

Update in February 2009: In May of 2008 after months of continued pain and decreasing movement of my knee, my Omaha surgeon recommended arthroscopic surgery to “take a peek” at my knee cap, remove any scar tissue they could get to, and then go from there. I proceeded with that surgery in May of 2008. It was a relatively simple procedure; I was in the hospital for a few days and had a pain block in place. I returned home and for the next two months used an in home CPM unit. It wasn’t long before I realized that surgery was not the answer. The pain eventually worked its way back even more aggressively and I suffered each and every day. It was difficult to walk and the pain consumed my days and affected everyday living. The only way I know to describe what was happening, is to say that when I bent my knee, there was a visible shifting (of my kneecap?) and a “pop” that occurred as something seemed to settle back in place (you could feel it happening if you put your hand on the front of my knee as I extended it). It often felt as if something was wedged there or that possibly my knee cap was not tracking properly. Nothing relieved the pain. I was not taking any prescription pain medications. Advil, Tylenol, ice, heat, little activity, vigorous activity, regardless of what I did, nothing eased the pain.

As I neared the two year mark from my diagnosis I was feeling depleted. My surgeon in Omaha had no answers. I made copies of my films and medical notes, included a letter asking for help, and mailed it to the Mayo Clinic in Rochester, MN. And I waited, four months in all, before I received paperwork saying they would see me. That was in October 2008. Meeting Dr. Franklin Sim and having him look at my films, explain things like no one ever had, and telling me he could help me, made me see the light once again! I scheduled surgery for December of 2008. The plan was to go in to the knee, and resurface the kneecap and put in place a plastic cap device that would make my kneecap glide over my metal knee. I couldn’t wait. I would have done it that day if they would have taken me!

On December 3rd, 2008 I had my 4th surgery. It did not go quite as planned, however, much better than planned! While in surgery, Dr. Sim determined that I needed a smaller knee prosthesis as well as the kneecap resurface/plastic cap device, and he was prepared with the parts necessary. So, the surgical team basically reopened the entire incision (oh, it’s a real pretty scar now!) and took apart the prosthesis and replaced the knee, and one of the rods, and repaired my kneecap. Within a day I knew it was totally different. Painful, yes- but I could kick my knee out, and bend it with no pain what so ever. My bend is now comfortably at a 90 degree, I walk much smoother, and there is no popping or clicking of any sort. I was on crutches for about a month, but now I am driving, walking, shopping, and doing as much as my leg will allow in a day. I only hope it continues to get better with each day.

Diagnosis: I was diagnosed on May 22, 1996 at the age of 25 with osteogenic sarcoma of my right distal femur. My diagnosis came 2 days after a bone biopsy. My story goes like this:

In the summer of 1993, with visiting family in CA, a sudden sharp pain overcame me along the back of my right knee/thigh area. The pain came and went so I didn’t think much of it. Thought maybe just a strain or stepped wrong. Upon returning home the pain worsened and I figured better safe than sorry so I went to see an orthopedic specialist. After visiting 2-3 different orthopedic doctors a small bone tumor was revealed through x-ray and then confirmed by an MRI in April 1994. At the time it was felt to be a benign non-ossifying fibroma. With little knowledge about bone tumors my orthopedic, Dr Fletcher, felt it was best to watch it and wait. Seemed like nothing was helping, did PT, anti-inflammatories, and rested my leg as much as possible. Out of frustration I decided to just deal with the pain and swelling. Two years later the pain had worsened, becoming unbearable at times, causing me to return to my orthopedic. A repeat MRI showed slight tumor growth with irregular margins. So a biopsy was schedule for a month later, the longest month of my life.

On May 20, 1996 I had a bone biopsy done. Two days later on the 22nd I was diagnosed with high-grade osteogenic sarcoma of my right distal femur. The day of my diagnosis was a whirlwind of activity. I was off for chest x-rays, chest CT, bone scan, blood work, and met with my oncologist, Dr Weissman, in Latham NY. The following week I met with my orthopedic oncologist, Dr Springfield, at Mt Sinai Hospital in NYC.

Treatment: Two weeks after my diagnosis I had surgery to put in a port and started chemotherapy. Neo-adjuvant chemo was 2 cycles high dose Methotrexate with Leukovorin rescue. Which were 5 days in the hospital, scheduled 2 weeks apart. Then came 3 cycles of Adriamycin/Cisplatin combo (YUCKY!!!) administered at my oncologist’s office each 3 weeks apart, finishing that course in late August.

Limb salvage surgery was September 10, 1996. Consisted of radical resection of my right femur with osteoarticular allograft, patella replaced, and short head of my quadriceps muscle resected. I was in a long leg cast for 2 months and then a custom long leg KFO block brace for another 3 months. After surgery I spent 10+ months on crutches, started with no weight bearing then toe touch, to 75% in June 1997 and finally walked with a cane in July. Adjuvant chemo began in October 1996, ending with 3 cycles of Ifosfamide. Again 5 days in hospital given 4 weeks apart. On December 7th I turned 26. And on Dec 13th I finished my last chemotherapy. What a way to celebrate the holidays and bring in the New Year.

My hospital experiences were difficult. At 25, I was no longer a pediatric case so all my treatment was given on the adult ward. Which consisted of mainly dying elderly patients. Not a fun experience at all. My first 2 treatments were like living in a time warp. My second treatment ended with an early 1 am breakout. Couldn’t take it anymore. Felt like I was living in a fog in extremely slow motion. Just wanted to be at home in my own bed. The doc loved that wake up call. LOL! My last 3 chemos were at a hospital my oncologist visited. What a wonderful experience. The nurses treated me like one of their own. I had a private room, special meal requests, slept with my door closed, kicked out the maids, my doc wouldn’t wake me but rather do all his rounds then come back to me, he even made special trips to see me, I ruled the floor. I became the “queen of 3S.” At times it was lonely as everyone was working and carrying on their lives while I was fighting for my life. But I made it through. No worse for wear.

Recovery: Well, one could consider me a physical therapy “lifer” at this point. LOL! My therapy began in Dec 1996 and has been going strong ever since. Since my limb salvage surgery I’ve had 5 knee surgeries: 12/97 TKR (total knee replacement), 4/98 removed cement that leaked in TKR surgery OOPS!, 6/01 lateral patella release, 2/04 TKR revision – replaced plastic components to TKR, and my latest 12/04 – partial TKR, lateral release, and button on patella. [Click here to see my x-ray.] Can yah see why PT is still part of my life? Plus, in between I’ve managed to severely sprain my left ankle and a wild spill off my bike while off-road biking, all with a sprained ankle resulting in a rotated pelvis and tail bone that to this day is off about 1 inch to the right side. So I’ve managed to have a bit of fun that changes up my therapy needs. Takes the focus off this damn knee at times. My orthopedic oncologist says he’s ready to “take me out back and shoot me.” LOL! I love that guy. Not sure he realizes how much I appreciate all he’s done and continues to do for me. I’m his nightmare patient. He also says patients are discharged when there x-ray files weigh more than the patient, which is about true in my case. LOL! Guess someone needs to keep him on his toes. Right?

Life Now: The key is I am ALIVE. Life now is still filled with a lot of medical “stuff.” Most of my time is spent running to doctors appointments and dealing with long term effects of dealing with cancer. Although, I have two wonderful dogs Zephyr and Sheba, who I enjoy spending lots of time playing with. Needless to say I do not work. I did go back to school after treatment and have my BS in Biology graduating in Dec 2002. I also have an A.A.S. in Criminal Justice. Maybe one day I’ll get to use it. I’m thinking pharmaceutical rep. maybe? My passion is working with other cancer survivors, especially young adults. But I’m so not into going back to school to start over again. I volunteer at a local Gilda’a Club that recently opened. It’s like a second home to me, very welcoming and inviting. Which is adding purpose to my life.

Even with all the changes that have taken place in my life due to my cancer diagnosis I wouldn’t give it back. Sounds crazy but it’s true. The people and opportunities I have had over these past 9 yrs have been extraordinary. I’ve been places, done things, and learned more about myself as a person than I probably would have otherwise. My mom was my rock during treatment: living with me, carting me back in forth to treatment, caring for me day and night, and being my emotional support. My dad has been my rock after treatment: helping me financially by giving me a roof over my head, car to drive, and helping with medical expenses, while offering as much emotional support as a dad can. It’s because of all those people who took time out to help me during my cancer experience that I’ve made it this far. Some of my fun adventures have been – living with my gram in OH for 5 months and being with her during her death, several trips to Miami beach and cruise to the Bahamas, a trip to Ireland, several trips to CA to visit my older sis and her family (4 nephews and a niece). My most recent trip to see them was this past October (2004) where I witnessed the birth of my sister’s fifth child, my nephew Michael. More adventures include several yearly trips to OH to visit family and friends, summer trip to San Diego, getting to spend lots of time with my best friend Kristi and her husband Paul, and much more.

Thoughts and Hints for New Patients: My advice to you – Take one day at a time. Laughter is truly healing to the body, mind, and soul. If possible find someone to connect with who understands what you’re going through. Know that all your thoughts, emotions, fear, anxieties, etc., are normal. Listen to your body. You are the best indicator of how you feel and your best advocate. So ask the tough questions and don’t be afraid when necessary to demand answers. Don’t settle for anything less than what you deserve. Choose doctors who are not only top in their field, but are also warm compassionate souls. This will go a long way during and after treatment. Don’t stress over the little things. Set goals. No matter how big or small and cross each off when you have accomplished it. Keep a journal and/or scrapbook. Great for reminiscing and when need pick me up. Remember no one’s life is guaranteed. We’re just the special people whom got to learn this before it was too late. Live life to the fullest as everyday is a gift.

It is possible to live after an experience with cancer. Maya Angelou wrote “Surviving is important, but THRIVING IS ELEGANT.”

Update (February, 2009): Since I last reported not much has changed. I have undergone several more surgeries: 12/05 removal of calcification in popliteal area (behind knee). I fractured the allograft bone and there was loosening of the cement along the rod in my femur which led to surgery in 2/08 – removal of plate and screws in femur and allograft bone, revision to total knee replacement (TKR), and insertion of partial prosthetic femur and long rod extending up near hip joint. For some reason this surgery didn’t go very well. My body rejected the metal prosthesis which led to another surgery where they did another revision and cemented the rod in my leg in 4/08. I am currently waiting for my next surgery due to the loosening of cement around the rod in my femur. Not sure what my doc will be doing. I’m still going to physical therapy regularly and other maintenance dr. appointments. I’m praying that this next surgery will be it for a long while. I’m itching to get on with my life. I’m still not sure what I want to be when I grow up but I’m sure it will come. One of the best thing that has happened to me since my last report is that my pain level has drastically decreased with the Feb. 08 surgery and removal of the allograft bone. With the Lord’s help I am living each day as it comes. My spare time is spent attending church, bible studies and hanging out with a core group of special friends and of course my family and dogs.

Diagnosis: I had been having pain in my knee for 4 – 5 years. I went to my GP for the first time about my knee in January 2004 and he referred me directly to physio without doing any tests or x-rays. I tried that physio for about a year but due to moving house and the exercises not doing a thing I gave up. The pain was still getting worse so yet again I went to my GP who again referred me to physio in August 2005 (yet again without any tests) and was told basically to do the same exercises, which I stuck at for another year but again gave up due to moving house and stuff, plus it was still getting worse not better. Over Christmas 2006 it was getting worse, I could hardly bend it, was very swollen and extremely painful. I went back to my GP who I told I needed this sorting and he agreed to do blood tests to see which department to refer me to at the hospital.

A few days later I phoned the hospital and they got me an appointment for the middle of March. A few days later I got a phone call and they said they had prioritised me and could I go next week. I saw the Specialist Physiotherapist and the Rheumatologist who examined me and asked me to go for an x-ray and blood tests and then to go back to see him. He was talking about drainage and biopsies, but it wasn’t his expertise and he would refer me to his colleague.

A few days later I got a call from the hospital who said they had been ringing all day to try to get me in (this was a Thursday at 16:50) and wanted me in on Monday 5th February 2007 at 9am. They sent me straight for another x-ray of my whole leg and chest (which when questioned was a normality). Then I went to see the Orthopedic surgeon who told me I had a malignant tumor in my knee and the best treatment was in Birmingham so they would refer me there to do further tests ASAP. I felt and still feel very frustrated about the time it took for me to be diagnosed. If it was found and treated 4-5 years ago I’m almost sure it would have been benign and could have been removed without the need for limb salvage surgery or chemotherapy.

Treatment: First I had 10 weeks of chemo, which included Cisplatin, Doxorubicin and Methotrexate. Then I had limb salvage surgery as the tumour had grown in my knee bone. This was a total knee replacement and half my thigh bone replaced with a metal rod (Right distal femur.) About a month after surgery I had a red patch on my right leg, after investigations this was believed to be an infection, so I had an open wound washout to get rid of the infection on the prosthesis. Then I had 30 more weeks of chemo, I was on the Euramos trial so this included more chemo drugs, these were Cisplatin, Doxorubicin, Methotrexate, Ifosomide and Etoposide, these were to see if I had a better response with the extra drugs. I had a poor response to the chemo before surgery so I thought this was a good idea, even though it was stronger, more drugs and meant two months more treatment. I was treated on the adult ward, so this wasn’t very nice. I did meet lots of nice people and the staff were run off their feet but all tried their best. But I would have appreciated being on a young persons’ ward and I think it would have given me more motivation and involvement. I did make friends on the teenage ward (as I was 21, I was too old to stay on the ward) and I was very welcome to use the facilities there, so that was a nice change from the adult ward.

Recovery: I am still having Physiotherapy three times a week and probably need it for quite a while, three months after finishing chemo I feel I’m now progressing more and getting stronger.

Life now: I haven’t managed to get back to work yet, I feel like I’ve still got a lot of strength to regain yet. I’m just taking it slow and enjoying life, short walks, shopping and NO hospitals!

Thoughts and Hints for Patients: Stay strong and be positive, you can get through this!