Sami’s Story
Osteosarcoma at the distal femur with lung mets
Age at Diagnosis: 21
Date of Diagnosis: 1995

Diagnosis: It started with a little swelling in my lower leg which I disregarded thinking I bumped my leg somewhere. Some time passed by and it didn’t go away, so finally went to the local hospital. The doctor thought it was swelling and gave me some meds for the infection. The condition persisted and I went to see another doctor. He took an x-ray, and with one look he told me it was osteosarcoma and referred me to the only local hospital in the country that deals with cancer.

Lucky for me all my cousins are doctors at this hospital, and my case was given first priority. I was told that the cancer is at the last stage but luckily it is contained in the femur and has not spread elsewhere in my body, they told me the best thing to do here was amputate my leg above my knee.

Treatment and Recovery: I did the normal MRI’s, bone scans, X-rays, blood work, etc., and went in for the amputation. Recovering was tough as in my country; there was no professional to turn to for guidance, no dietician to tell me what to eat or what to expect.

After the operation I was was made an artificial leg (a very basic one) to learn how to walk and use it on my own. I am still figuring it out today. I was also given adjuvant chemo, 6 doses for six months. Adriamycin is one I remember now. I had the toughest time with no one to turn too in any way. As a result, I have permanent damage in my stomach, and my hair never grew back properly.

I have had bi-yearly x-rays of my chest since then for 10 years, which ended in July 2004. I was all clear and was let go from the hospital as cured.

I married in 2002 and have a good life. My partner fully understands my condition, and since then we have helped ourselves, mostly with information from the internet. I am looking forward to getting a much better artificial leg from a nearby country.

Recurrence: My last x-ray was July 2004, as mentioned before. However, for my own peace of mind I decided to follow with a private clinic and went for a regular checkup in March 2005. It was back – a perfectly rounded sarcoma in my lung just near my heart, measuring 5×4x4cm.

We were crushed; however, we didn’t waste time and found a great doctor in my country who was visiting (our angel). I had an operation again. Half of the lobe of my lung was removed, It was a very painful recovery, but this time I have help: a great doctor, great wife and more knowledge. I am doing ok now and waiting to go for chemo in a couple of days, 3 doses.

Thoughts and hints for new patients: Hang in there; that’s the best thing you can do for yourself.

The rest of Sami’s story (shared by his wife): Sami had his chemo and was ok till Oct 2007, when we went to see a doctor for a regular flu he suggested an X-ray and there it was. He was quite heart broken after he found the results of all the scans and tests, he was at Stage IV. I remember him telling me that night that he knows this time he wouldn’t survive. We had to travel outside our country as no one here knew how to care for him.

We lived in Istanbul from Nov 2007- September 2008, where Sami recieved Various Chemo, radiation and cyberknife surgery. In June 2006, after his Cyberknife surgery and successful rounds of chemo we were told that Sami was responding very well, they had got most of the cancer! We had to wait another 3 months for scans to see the results of the Cyberknife. During this time Sami was not able to continue his chemo because of very low blood counts. We spent this time in and out of the hospital, but Sami was the happiest during this time.

The doctors gave him an early scan due to a cough he had developed, which showed the cancer was back in his lungs, and more scans showed that it had spread to his kidneys, more bones and to the heart too. A bone marrow biopsy was taken and it was invaded too. The doctors asked me to come and see them, and the walk to their office was the most difficult ever, I was told Sami had at most 2 weeks to live, there was another chemo they could try but the results will be less than 15%, Sami the brave fighter he was took the news in more bravely than me, he said what he always did “Alhamedullah and Allah Kareem” which means ” God is great and merciful and I am thankfull to Him in any condition”.

Sami decided to take the chemo but we also decided to go back home and do it, we came back home on September 1, 2008, which was the first day of Ramadhan (the holiest fasting month for us Muslims). He was a little sad that he couldn’t fast this year. At home we were surrounded by family, he was happiest beyond words to see his new born niece; he called her “Angel.” His favourite cousins came over to see him and he at a blast with all of them. God was very merciful to him, till the day he died he never was in pain, when doctors asked him if he needed pain meds, he used to say, “for what i don’t feel any pain.”

Sami was not able to breathe on his own anymore and needed oxygen at all times, we were transferred to our local hospital. He insisted on taking the chemo saying he will fight till the end, his chemo started on 11 September, his condition was declining. 12 September we celebrated his birthday in the hospital, he was in and out of consciousness now, but was happy blowing out his candles. On 13th September he woke me early in the morning at about 4:00 am and said to be “Sweetheart, enough! No more” and kept repeating that, I couldn’t understand at that moment what he meant, as he used to often say ‘Sweetheart enough!’ to me when I tried to make him eat. From that morning onward he wanted me really close to him, holding his hand all the time, he wouldn’t let me out of his sight, I had to actually sneak to the bathroom really quickly when he slept.

Ewing’s sarcoma at the pelvis
Age at Diagnosis: 44
Date of Diagnosis: 2006
Location: Columbia, Missouri, United States
Surgeon: Howard Rosenthal of the Mid-America Sarcoma Institute
Oncology Team: Anderson, Miller, and Westgate at Ellis Fischel Cancer Center

Diagnosis: In late January 2006, I left Missouri for two months of fieldwork in Indonesia with a growing tumor in my right pelvis. That hip had been stiff and hurting off and on for quite awhile (over a year at least), but everyone assumed it was muscle/exercise related. (The stretching exercises did seem to help for awhile so no one thought anything of it.) During my time in the field, however, the cancer decided to accelerate its growth; I can’t recall a more uncomfortable and sometimes excruciating field experience as it began mashing rather unrelentingly on my sciatic nerve, making it painful to walk very far.

On my return home in early April, my wife and I went to a sports doctor, still assuming it to be muscular, but were urgently referred to Dr Marc Miller at Ellis Fischel Cancer Center (EFCC) here in Columbia – probably one of the most underrated cancer centers in the country and a wonderful facility with many caring and competent nurses and doctors. He was certain that the tumor was some sort of sarcoma, and a biopsy confirmed it as Ewing’s sarcoma. [At 44, I was on the “old” side of the stats for this cancer which normally hits teenage males.]

Treatment: My case was taken up by Dr Clay Anderson and Mary Cunningham (who also established a palliative care practice, of which thankfully I have not had to avail myself), and by early May I began a year-long regime of chemotherapy (alternating cycles of vincristine / doxorubicin / cyclophosphamide and ifosfamide / etoposide). (The first thing that fell out was my beard, then the rest of my hair from head to toe!) And the tumor, which had extruded from the pelvic bone and grown to melon-size, actually dissolved during the very first couple rounds of chemo – “like melted butter,” as one of the medical fellows said. (I will never look at butter quite the same.) Then came six weeks of radiation in October – linear-accelerated X-ray/IMRT at 2 Gy or 200 RADs (don’t ask me: I didn’t understand it then either) – administered by Dr Stephen Westgate at EFCC.

In late January 2007, I went through surgery – a hemipelvectomy, to be exact, with reconstruction (meaning most of my upper right pelvis was cut out and a graft from my right fibula was inserted). For this we went to Menorah Medical Center in Overland Park, KS where Dr Howard Rosenthal has his Mid-America Sarcoma Institute practice. As with EFCC, the Sarcoma Institute is a gem of expertise and caring; I feel most fortunate that Dr Miller referred us there.

Recovery:After surgery and some recuperation at Menorah, I was transferred back to Columbia and stayed at the Rusk Rehabilitation facility for in-patient physical therapy for two and a half weeks. (I might have enjoyed my stay there a bit more had I gotten a room with a window, but at least I had a very entertaining roommate.) After being discharged from Rusk, I finished up my chemotherapy (three final rounds), and then went back to Rusk for out-patient therapy during the summer of 2007 – to get my muscles working enough so I could walk on my own again.

Life Now: I am now in that long and uncertain period of continual monitoring, for years to come. Bone is regrowing into the gap left by the surgery; in fact, it had started to grow during the last bit of chemotherapy (something that Dr Rosenthal was surprised to see given the negative effect of chemo on cell growth). And I am making slow but steady progress in walking.

Throughout this experience, which has included bright spots (such as the nurses and therapists of EFCC, Menorah, and Rusk) and (perhaps inevitable) despair and depression, I have had tremendous support from family and friends around the world, from Missouri to Borneo, but especially my wife and son, and the MU Department of Anthropology across the board. I doubt I would have come through it as well as I have without them holding me up along the way.

————–

Editor’s note: Reed shared his story with us in July 2007. In November 2007, he wrote and explained that he was dealing with a recurrence. He also shared a fascinating story about his work that is published here.

After his recurrence, Reed took two rounds of palliative chemotherapy, and was hospitalized with a near-fatal case of pneumonia as a result. Even though the chemo seemed to be holding the cancer at bay, he decided that he didn’t want to spend his final months in and out of the hospital. Therefore as of mid-February, he ceased all chemotherapy.

For almost three months, he had a relatively comfortable time at home under the care of his wife Oona and his home health nurse, Stephanie Wriedt. He was able to receive visitors, keep up correspondence, wrap up additional work, and see his son turn 10. Except for a short but very successful round of palliative radiation to address a brain metastasis that was affecting his eyesight, he had no more treatment of any sort.

He enrolled himself in hospice care at the end of May, began to decline quickly after that. He succumbed to the Ewing’s Sarcoma at his home on early Saturday morning, 28 June 2008, at 4:30 a.m. He is survived by his son Lucas, his wife Oona, his parents Gwen and Harold, and his siblings Rose, Neal, and Rance, and their respective families.

Ewing’s sarcoma at the scapula
Age at Diagnosis: 32
Date of Diagnosis: June 2004
Location: New York State
Surgeon: Dr. Patrick Boland
Oncologist: Dr. Paul Myers
Hospital: Memorial Sloan Kettering in New York City

Diagnosis: I had had surgery for a torn labrum in my left shoulder in March of 2004. When I visited my doctor for my three-month checkup (June 9), I had swelling in my left shoulder. The doctor ordered x-rays that showed a dramatic change in my left scapula. Seeing this change, he ordered an MRI to look more closely. The MRI showed erosion in my left scapula. At this time, he was confused. My previous MRI (Dec. 2003), showed no defects or problems with the scapula. He was concerned that I may have had some reaction to the anchors from the surgery. Or worse, that it may be an infection or some type of tumor.

Because I live in a small town, he sent me to an orthopedic oncologist in Syracuse. As soon as this new doctor saw my scans, he ordered a battery of new tests (including a bone scan and CT scan) and did a soft-tissue biopsy of the swollen area. I received the news of a diagnosis of Ewing’s Sarcoma the following day (June 16). An appointment to see a medical oncologist in Syracuse was made for June 21.

When my family and I learned of the diagnosis, we went into the initial visit with the first oncologist with the knowledge that Ewing’s is rare and one should get a second opinion (preferably at a large cancer center.) Once my first visit was completed, I managed to get an appointment at Sloan-Kettering for two-days later (June 23). Unlike my visit with the first oncologist, my visit at Sloan was with a medical oncologist in the Pediatric Clinic. Ewing’s, being a predominantly pediatric cancer, is primarily treated in pediatrics at Sloan-Kettering.

The treatment protocol followed by the doctor at Sloan varied greatly from the one put forth by the first medical oncologist. After a number of conversations with family members, I decided to have my treatments done at Sloan-Kettering. Before treatments could begin, my medical oncologist ordered a PET scan. Additionally, he wanted to look at the slides of my biopsy to ensure the initial diagnosis was correct.

I had a dual-mediport inserted and a bone marrow biopsy conducted on June 28. I began my first cycle of chemo on the following day, June 29th.

Of course, the logistics of having treatments done in New York City can be daunting if one doesn’t live in New York City. For patients ages 26 (I believe) and under, there is a Ronald McDonald House that offers truly reasonable rates and is just a short walk from the hospital. The social workers can help set that up. If you are over that age, I am 33, it is increasingly more difficult. Fortunately, I have had a tremendous help from family and friends that enabled me to stay in the city.

After completing my first protocol, I was diagnosed with a recurrence of Ewing’s in May of 2005. This diagnosis was approximately 5 1/2 months after my treatments ended. Once again, I started treatments again fairly quickly.

Treatment: Since I was treated in a pediatric ward, I am unaware of how my experience differs from those who have been treated in an adult oncology center. At Sloan-Kettering, my medical oncologist was the point-man of a team which included an orthopedic oncologist, a radiation oncologist, various nurse practitioners, and nurses. Although the doctors could be and are always busy, they generally offered great amounts of time for answering questions and explaining procedures or other things. I understand that many have had some difficulties with various parts of the hospital, but my experiences have been good.

For my initial diagnosis of metastatic Ewing’s, I followed a protocol of seven cycles of chemotherapy, surgery for my primary tumor, and radiation therapy for the other spots. Chemo included three three=week cycles of vincristine, doxorubicin, and cyclophosphamide, followed by three three-week cycles of ifosfamide and etoposide, and concluded with a cycle of vincristine, doxorubicin, and cyclophosphamide.

My surgery was completed following the fourth cycle of treatment. The surgery called for the removal of my left scapula and the muscles and tendons surrounding it. Once the scapula was removed, the doctor transplanted a scapula from a donor and fixed it in place with surrounding muscle.

Once healed from the surgery, I began the remaining three cycles of chemo and twenty sessions of radiation therapy to deal with the smaller spots that had appeared in my right femur and spine. In all, the treatment protocol lasted roughly 6 months. The treatment itself went fairly well. I, fortunately, had little nausea but dealt with periods of neutropenia. Simply put, a regular cycle of chemotherapy would be as follows – Week 1 – two to five days of chemo (depending on the drugs), Week 2 – neutropenic for much of the weeks with regular doses of GCSF to promote white blood cell growth, and Week 3 – recovery in preparation for the start of a new cycle.

Following the diagnosis of a recurrence of Ewing’s in May of 2005 (noted on a PET scan and MRI), my medical oncologist offered a new protocol. I would do three rounds of cyclophosphamide and topotecan and 10 radiation sessions. Once completed, I entered a clinical trial that called for a bone marrow transplant. I had my transplant on July 26, 2005 and am currently recovering from that.

Recovery: Having dealt with a recurrence so quickly following the completion of my first treatment protocol, I feel I have been recovering for some time now. Over the course of treatment, I have generally felt well. I have been able to eat well and continue to enjoy a decent amount of energy.

Due to my shoulder operation being rather extensive, I have done quite a bit of physical and occupational therapy to regain as much mobility and usage of my left shoulder as possible. My orthopedic doctor is unsure exactly what I will be capable of over the long haul but at the very least, I have reached his minimum goals. These would be full elbow function. I have gone beyond that now and have gained some shoulder function. With more work, my shoulder function should keep increasing.

Most importantly, I feel that I am in a good place mentally. Being diagnosed with cancer can be quite a blow to the psyche. It created quite a few moments of anxiety and doubt. Although there can be times I feel an uncertainty about the future, those feelings don’t dictate me.

Life now: Six-months from a bone marrow transplant and I am still in recovery. Due to this recovery process, I have not gone back to work yet but am looking forward to the day I can. I am fairly active in other things though. I walk and read regularly and enjoy a healthy with family and friends. In many ways, my relationships have become much more open and honest.

Thoughts and hints for new patients: A little solitude is not a bad thing. Dealing with a diagnosis of cancer is quite difficult and needs some quiet time to help smooth the acceptance process. At the same time, open and honest communication with family, friends, other cancer patients, survivors, and care givers is very important. From talking to others, one can gain knowledge and reassurance. Also, when one is going through treatments, it is important he or she can express what is needed or how he or she is feeling.

Be your own best advocate.

If you can, find a doctor you trust and have a good relationship with. You should feel comfortable when you need to ask questions or are being given information. I truly believe it goes a long way in achieving success.

Always remember, you are not alone. There others who have been through similar situations. And, even your caregivers, who may have not gone through what you will, are capable great empathy for your situation.

January 2006

Editors note: Kevin developed multiple Ewing’s sarcoma bone mets in late 2006. He started taking Temozolomide and intravenous irinotecan, and these drugs stopped disease progression and shrunk some of the tumors for nearly a year. The treatment was administered at Memorial Sloan-Kettering, and it looks like there may be a Phase II trial at some point. In the mean time, some doctors may be able to offer these drugs to patients with progressing Ewing’s sarcoma even without an official trial. More info here. And hugs to Kevin…

Kevin’s Obituary

May 19, 2008

LAKE PLACID — Kevin John Broderick, age 36, died on May 17, 2008 after a nearly four-year battle with Ewing’s sarcoma.

A native of Holyoke, Mass., Kevin lived in Lake Placid for the past nine years, where he worked as a teacher of AP U.S. history and served as an assistant hockey coach and goaltender coach at the National Sports Academy.

A 1995 graduate of the College of the Holy Cross in Worcester, Mass., Kevin was a standout collegiate goaltender and a 1995 ECAC East All-Conference First Team selection as well as the winner of the 1991 Bessone Award given to the best hockey player in western Massachusetts.

His passions in life included teaching, spending time with family and friends, reading, and sports, including World Cup Soccer, golf and the Boston Red Sox.

Kevin embodied the motto, “Love, Compassion and Strength,” and inspired others through his own life, his easygoing and caring way, and his generous nature. Kevin had a gift for bringing people from different backgrounds together in a spirit of unity and cooperation.

Throughout his tenacious battle with cancer he took the time to comfort and support other patients who were suffering, including children, adolescents and adults. He also cheered and strengthened his family, care-givers, doctors and nurses with his tremendously positive spirit.

Kevin leaves behind the love of his life, Andrea St. John, whose love gave him such joy and happiness; his parents, Tom and Elaine Broderick of Deerfield Beach, Fla.; his sister Kelly Moss and her husband Joe of Santa Monica, Calif.; his brothers: Michael and his wife Suzanne of West Merses, England, Thomas and his wife Nicole of Lake Placid, and James of Shrewsbury, Mass.; as well as his nieces and nephews: Jonathan, Jameson and Alena Moss, Megan Broderick and Morgan and Kate Broderick; his aunts, uncles and cousins.

The Broderick family wishes to extend a special thanks to all of those who helped Kevin during his treatment and brought him joy during a difficult time, including but not limited to: his caregivers, the doctors, nurses, staff, patients and the families of Sloan Kettering Memorial Hospital, the students, faculty and staff of the National Sports Academy, his friends and teammates at the College of the Holy Cross, his friends in Holyoke, Mass., Randy and Mindy Levine and the New York Yankees, who treated Kevin with compassion and class even though he remained a loyal and diehard fan of the Boston Red Sox, High Peaks Hospice, and the great and generous people of Lake Placid.

You can read more about Kevin at his website. Tax-deductible donations in Kevin’s honor can be made to the Adirondack Community Trust: Kevin Broderick Fund, 2284 Saranac Ave., Lake Placid, NY 12946.

Kevin will live forever in our hearts and memories, and we look forward to one day seeing him again.

Linda writes: My husband was a very unique and energetic man. He was very smart in business, and his advice was sought after by many. He was a “fixer” in that he was always making things (and people) “better.” He had a gift that way. Physically, he could work circles around men half his age (and often did). He loved the Lord, and was very devoted to his family. He was sensitive to the feelings of others, and often set his own needs aside for the sake of everyone else. He was very busy, always. He was a wonderful husband, very romantic, and very sweet. We dated for 6 years, and were married 17 1/2 years, totalling 23 1/2 years.

The Cancer Experience: When my husband was first diagnosed with cancer 9 years ago, in 1996, we were very scared. There wasn’t much data available about chondrosarcoma. We trusted our doctor, who was a musculoskeletal oncologist, very much. He told us that he would do his best to make Dave “his survivor”.

After surgical resection of Dave’s shoulder, we had to learn again how to function and live with cancer. It was not easy. Day to day functions that we take for granted had to be relearned in a new way, because Dave did not have the use of that arm any more. Everything in our lives changed, physically, mentally, and emotionally. Our spirituality grew more and more. We lived more in the day by day mode, rather than looking too far into the future. We became more and more thankful for each day. We changed our long term plans to be short term plans. We didn’t look for death, but knew it could come someday.

When the cancer metastacized just in time for Dave’s 5 year check up, we were bewildered and scared again. The surgical resection of the lung was a very difficult surgery for Dave this time. He took longer to heal, and was in more pain. I was scared the whole time. All along we were told, “surgery our only option”. We did all the radical diets, settling on a vegetarian diet that seemed very healthy. We did a lot of juicing, and ate raw vegetables mostly, and while there was cancer going on (we didn’t know) we at least were feeling healthy. Dave got more rest, cut his work hours, relaxed more, ate healthier, and loved better than ever before. He joined a cancer support group that met for 12 weeks; came to grips with what having cancer meant to him and for us. I wish I had gone to the group with him, but I do feel (and he did too) that I was as supportive as I possibly could have been. I did the diet, and gave up what we felt was detrimental, willingly. We felt that WE had the disease, not just Dave.

I am crying as I write this, because if I had known how the end would feel, maybe we could have tried other options? I am scared of each day right now, because I don’t know exactly how to make it through each one. I live right now moment by moment, because I never know which feeling will overwhelm me now.

On February 5th of this year, we found out that the cancer had again metastacized, to both lungs, and also to the left ventricle of Dave’s heart. They told us that Dave could live 3 to 6 months, but that he also could die at any time because of the location of the tumor. Then the doctor left the room (this was a cardiologist we had never met before) with instructions for others to leave us alone. We stayed in the room for nearly an hour, afraid to leave the doctor’s office, crying the whole time. From then on, everything went quickly. We made a mad dash to visit Dave’s mom and siblings in another state, visited our attorney to be sure everything was ready legally, met with the kids and grandkids, and then began to prepare for the end. We prayed each day for “one more day! “.

Dave lived until May 4th. We had hospice come in at the end, although I did everything myself for my husband. We never let the nurse do anything other than advise. I felt privileged to be able to take care of Dave’s every need. When he got so weak that he couldn’t bear his own weight, Dave’s son would lift him, and I would care for him. My husband called us “the A team”. I stayed up through the night to be sure he was breathing.

I don’t remember being taxed in any way, except I didn’t like everyone dropping in so much (as people often do when they know you’re going to die soon). I would cry after they left, because it hurt my husband SO much when people would tell him how bad they were going to feel when he was gone. He would be in tears by the time most left (they would leave feeling better –”they got to tell Dave everything they wanted to”) and it would take me an hour or more to calm him down. People when they are dying do become more and more fragile. I felt like people were stealing my time away from my husband too. Now it’s 4 months later, and no one calls, and no one asks..it hurts awfully. I am very much afraid of cancer.

Dave’s Legacy: They say that people die the way they live. It’s true. My husband who was very kind in life, was even more so in death. An hour before he died, he thanked each one of us (son, daughter, daughter-in-law and wife) for taking care of him. He tried to do as much for himself as he could, and NEVER complained. I don’t know if I could ever be that good, but now I’ve seen an example. Also, he loved the Lord, right to the end.

Living with Loss: My life has changed in every way — I don’t know what to do with each day. Life seems less meaningful right now. My anchor is gone, and I am drifting aimlessly. Weekends are long, nights are long, eating is difficult, holidays are long, it’s hard to pay attention sometimes, it’s hard to be patient. My pets have helped me immensely — sometimes they are the only reason to get up for. My faith has helped me too; I know that God has a plan. I don’t have to understand it, just accept it, and I do. I don’t believe that I have unresolved items about my husband’s death. I do miss my husband very much, I hate being alone, I wish he was here, I know he’s not coming back, I know I’ll figure this all out later, in time. I know I took very good care of him, and no one will know what some of those long nights looked like for Dave and I — when he couldn’t quit coughing until he finally coughed up all kinds of blood, how scared we were, how much we cried, and how much we prayed.

Advice for other Patients and Caregivers: My advice for others: Do What YOU feel is the right thing to do — don’t be guilt tripped into anything by people who mean well but don’t have a clue.. Do seek alternative therapies for comfort measures — do try to be comfortable, like massage therapy. Physical pleasure helps. Don’t make the person with cancer feel like any less of a person, like any less of a man or woman, any less appealing. Support them with as much love as you can give. Support what THEY want to do. Be sensitive to what they cannot do for themselves, and DO IT FOR THEM! Bone cancer hurts, physically. Remember that, keep heating pads and ice packs around for comfort. Learn to give a massage, not a painful one, but a calming one. Take the time to just sit and be together as much as you can. You may need to draw on those times later.

On Grief: You may pick up that today is not a very good day for me. This seems to be a backslidden day– just a reminder that we don’t control grief, I think it controls us. My husband’s birthday would be tomorrow, Saturday, first day of a 3 day holiday. I thought I was ready, haven’t been crying for nearly 2 weeks now, and feel like I am ready to move forward. But today says to me to be patient, it will be a long weekend.

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” (author unknown)

Karen writes: Andrew was a very loving man. His family meant the world to him. He was a very hard worker. He was a baker following in his parents footsteps. Andrew worked hard and played hard. He liked to go out with his mates, but always put his family first. He had a lovley wife, Jane, a son Andrew and a daughter, Kirsty. We were a very close knit family, mum, dad, brother Carl and me Karen, his sister.

The Cancer Experience: Andrew was first diagnosed in January 1999. He was having a lot of pain in his right hip and felt a lump. He had a biopsy done and was told he had chondrosarcoma. Andrew had the first tumor removed and was clear for two years. He was going for regular scans and after two years the tumor was back in the same place on his pelvis. He had surgery to remove the tumor and then had clear scans for one year. Once again it came back. In all he had six surgeries, each time the tumor came back quicker than what they expected. The doctors told him the only way to cure him was to have his leg amputated. He went down for surgery on 6/14/2004, the day before his 37th birthday. When they opened him up, they found the cancer had spread to his spine, buttocks and liver. They did not remove his leg. The doctors stitched him up and sent him home the next day probably thinking he wouldn’t live long, but being so strong and not wanting to give up Andrew lived another ten months. Sadly, he died a terrible death. The tumors were eating him away. There were holes all over his body and he was in constant pain. I was relieved when he died. I couldn’t watch him another day. I was with him from the very beginning. I took him to all his appointments for years and I sat day and night with him for those last ten months. It broke my heart to watch my beautiful strong brother become what he had.

Andrew’s Legacy: It’s been five months since his death, but there’s not a day that goes by when I don’t think of him. It has changed my life forever. He was truly a legacy. Andrew was a brave young man and I feel so proud that he was my brother. God gave me a really special gift.

Living with Loss: My life has changed. I get really annoyed when people moan about the smallest things. My family has kept me going. I have a wonderful husband and three brilliant sons, they are what keep me strong. If I could turn the clock back I would be more pushy and question the doctors; knowing what I do now about chondrosarcoma, but it’s too late for that. Now, there’s no point on dwelling on it, who would benefit?

Advice for other Patients and Caregivers: Always get second, even third opinions and learn as much as you can about your disease.

A Note for Andrew: To my wonderful brother, I loved you more than I could ever tell you and I consider myself very lucky that you were my brother. You were a special gift given to me by God and like so many things, I sometimes forget to be thankful for you, but I would like you to know, I could never have chosen a more wonderful brother and I love you more than you’ll ever know. Karen xxx