Teresa's Story

Teresa, Liposarcoma Survivor

Teresa was 35 when she was diagnosed with myxoid liposarcoma at the abdomen in 2003. Her treatments have included surgery, chemotherapy and radiation therapy.

My cancer story began long before I knew the cancer was there. In hindsight, which is, of course, 20/20, I can look back at an obstetrical ultrasound done March 5, 2002 and realize we should have questioned the “ill-defined area” that was my tumor. But the obstetrician did not question, and I had not yet learned that you should always read your own reports.

My son was born October 11, 2002 and I thought all was well in the world. But a year later I was still struggling to lose the baby tummy. Despite my attempts to eat well and exercise, my tummy just won’t get flatter. I felt very foolish, but finally in November 2003, I visited my family physician who, God bless him, took me seriously and sent me for an ultrasound.

Things moved fast. The ultrasound showed a large mass, and I was referred to the Kingston Cancer Center, suspected of having an ovarian or uterine tumor. Surgery was booked for Dec 19, 2003. Life was whirling around me, and before I knew it I was heading to the operating room. The tumor was a retroperitoneal myxoid liposarcoma measuring 25 x 25 x 25 cm. No clean margins were possible with this type of tumor, and no further treatment was suggested. At the time I was very unaware of the seriousness of liposarcoma and felt I had just had a one-time close call. I went on with life not really giving cancer a second thought.

The First Recurrence

Regular CT scan follow-up continued, and I really thought nothing of it. In fact, in fall of 2006 I had a requisition in hand and was to book my own scan with Northumberland Hospital, as it was closer instead of going to Kingston, and I hadn’t bothered to do it. My best friend likely saved my life the day she said, "Hey, shouldn’t you have gone for a scan? Give me your requisition, and I will book it for you." Thank you, Brenda! She booked my scan in January, and I went and then left on a holiday. Upon my return the doctor's office was trying to reach me. Something was suspicious on the scan, and they needed to see me. To make a long story short, I was back in the operating room on February 21, 2007 where they removed four tumors, all recurrent myxoid liposarcoma. 

Between February 2007 and February 2008, I embarked on a personal mission to lose weight, eat well and exercise. I felt very successful and reached my ideal weight, taking 2-4 cycling or cardio classes a week and lifting weights. I felt great, had my stress level under control and was enjoying life with my husband and kids. If physical fitness could control cancer, then I should have never have had a recurrence, because I was the model of good health.

The Second Recurrence

My health initiative did not stop the February 2008 scan from showing a new mass, and I was referred for a second opinion to Mount Sinai and Princess Margaret Hospitals in Toronto. Here is an entry from my diary in September:

On October 31, the sky fell in on my world. My case was discussed at the tumor board, and the decision was that my tumor was inoperable. Radiation was not recommended, and a cure was not possible.  Perhaps chemo (doxorubicin) would slow down the symptoms.

Teresa and her husbandI will never forget that day. I couldn't really believe what I was told, that this tumor would slowly but surely take over my body. I began to fight...fiercely. I searched for other answers. I simply could not accept that this was it. I have heard it described as crazy, courageous, foolish, expensive, miraculous, understandable and even unbelievable, and I am not recommending this step to anyone else, but what I did next was seek cancer treatment in Mexico. Under the care of an oncologist, I was treated with a low dose course of radiation combined with chemotherapy. At that point in time my scans showed I had three tumors overlying the renal arteries, the vena cave and the pelvis. I spent the next two months at home, recovering strength and weight. In February 2009 I booked an MRI scan at a private pay-for-use clinic in New York. This scan showed dramatic shrinkage of the tumors, and I was encouraged to seek a surgeon to remove the tumors. 

A surgeon with the KRCC was very cautious, but after discussing all of the potential risks with both me and my husband, he agreed to operate on February 17, 2009. I cannot thank him enough for his skill as a surgeon and his willingness to let me have my chance at living longer. According to the surgery notes "a long, tedious dissection was undertaken, and we were able to get this tumor off of the renal vessels and off of the vena cava and remove it completely…and again excised the pelvic lesion in a similar fashion." All tumors were resected, and all three were identified as recurrent myxoid liposarcoma. Here is an e-mail I wrote in June 2009:

Hi Bernie - I think of you as one of the cheeriest people I know! I have always enjoyed talking with you. Of course it helps that you that you have a really awesome accent! Cancer changes you forever, but some of the changes are good. It taught me to enjoy the day that I have in front of me, right now. I have quit putting off doing things tomorrow. Today I am going on a school trip with my son. Last year I would have said no, I was too busy at work and I would have promised him next year I would go. Not anymore. I realize it may be 5, 10 or I hope 40 years from now, but there will come a time when I am not here to see him grow and I should be enjoying all I can now. Live in the moment. Love the day you have before you. You are so right; life is a play. You never know when the curtain call will come but we can do our best to make our play the best ever no matter what. Part of that is having good friends. You are my good friend. Thank you for being my friend. I hope I am a good friend to you. - Teresa  

The Third Recurrence

Teresa and her familyAgain, I wish I could say this was the end of the story, but there is much more.  As you read this it will seem that I keep getting my life waylaid by cancer, but when I look back on it that is not how I feel. I feel I have lived so much life between today and the original diagnosis in 2003. Events in my life stand out now, like pictures in pop-up books, and there are so many of them. I have been blessed by others who have shared their stories, I have learned, loved, grown. Life is so rich now. So don’t start to feel sad or discouraged as you read on. Know that each crisis was a platform from which I was able to spring from, up and onto the next step in life. 

The cancer came back in the summer of 2010, and through the help of an online support group called ACOR, I met other Canadian Sarcoma patients who encouraged me to seek a second opinion from the Segal Cancer Center in the Jewish General Hospital in Montreal. I met an oncologist there in the young adult clinic and was impressed with how, while being candid about my prognosis, he also offered me the hope of treatment options. The tumors were scattered this time, like a dusting of cancer all over my abdominal wall. These were a few of my thoughts before treatment started:

I was out running this past Saturday morning and it was a typical fall day, breezy and cool. The leaves were blowing off the trees and swirling around on the road in front of me. I felt God was speaking to me, wrapping around me like the wind. I heard him say "It's okay, it's your fall season and all seasons have a reason. Your fall, just like the trees, is a time to let go of your leaves, to quit growing and focus your energy into your roots. It is a time to use your inner strength and prepare for winter. Winter will be a time of rest, regeneration and renewal. It will be a quiet time, with peace and sleep, a healing time. Though you won't be able to see it, a lot will be happening deep in your roots as you build strength in preparation for Spring." When my Spring arrives I will once again flourish, growing, reaching for the sun, showing my leaves for all to see.

Chemotherapy was suggested, and I embarked on a new adventure. Every three weeks I would go to Montreal for a three night stay in the hospital to receive chemo infusion by IV. I became bald, which was kind of cool in a twisted way. I discovered I have a well-shaped skull, and since I don’t like fussing with my hair, putting on a scarf or hat suited my style just fine. Chemo also made me tired, fat, nauseous, irritable and forgetful. Chemo brain was the worst - I became incredibly forgetful under chemo treatment. The worst was I lost my vocabulary. It’s hard to describe, but I would be talking to someone and the word I needed would be missing. It was like a cloud...I knew the word was in my brain somewhere but I couldn’t see it.

Here is an excerpt from my diary during treatment in February 2011:

I am finding things difficult and it bothers me that I can't get over it. In my mind I know this not reasonable, but I don't seem to be able to make my heart know it. Here is the embarrassing part - my disappointment is because I thought I had wonderfully skipped past the need for surgery. Yet today, when we saw the oncologist, not only was surgery back in the plan but he also tossed in two more chemo cycles. Double POW. Like I said, in my mind I know all the good stuff. The chemo is working exceptionally well, we are getting better than expected results, and I am now a surgical candidate which was not possible six months ago. It's all very, very good. I can see the disappointment in people around me too. I guess what happened is for a week we lived without cancer and then we had to take it back. I am actually really angry at myself for jumping into saying the cancer was gone and no surgery was needed. I should have read that report more carefully and been my usual questioning self. I let my guard down there, and now it has hurt a lot of people around me. 

It's also making life crazy. Last week we were filling up my week with plans, and now I am leaving for chemo and all this stuff I was going to be responsible for I cannot be.  It's hard to push all that off of my plate; it makes me sad to not be able to do these things. 

There, that is the ugly truth of it all... Please know I really needed this chance to vent. This is the worst of it, and I feel much better for having put it into words. Just don't hang onto to this message too long; it's like a good cry - once it’s done it done and we can move on.

It was a long seven months, and although my family won’t admit it, I bet I was a little unpleasant to be around. However, it was all worth it, as the cancer was going, going, gone, and by April 2011 my scans were showing no evidence of disease! 

The Fourth Recurrence

Summer 2012 found me with the cancer back again...this time the scan showed one tumor but it was growing fairly quickly. Surgery was recommended this time, and they operated on me at Kingston General on July 19th. My incision is always pretty impressive, and this one was 29 staples. And surprise - instead of one tumor the surgeon found three of them. I am appreciative of his skill as a surgeon. I healed, spent the summer playing with my kids and celebrating life.

Life Now

I do more of what I enjoy now. I garden and grow food, I ride my horse, I sit on the porch and marvel at the thunderstorms, I listen to the rain, feel the wind and get kissed by the sun. I love my husband every day. I appreciate my kids every day. I get frustrated and angry at things in life, but those feelings are not my life. My life is full of marvel. I smile, a LOT. I do struggle now with digestive issues from the surgeries but I just work with it, seeking medical therapies that will help. I talk a lot about my sarcoma experience, as I find it helps others. I am very open about all of it, sharing publicly my journey and the need for more awareness and research. 

Working to fund sarcoma research

I get scared at times, but I have learned how to not worry. I pray - I love - I laugh, and when the scary creeps in I respect the feeling, honor it for what it is, and then I look at my life with my eyes wide open and see how incredibly wonderful it is. Right now, at this moment, I can't help but smile and feel blessed. I live soaking up each moment as it comes, rejoicing in the awesomeness of it all.

There have been so many lessons learned through by cancer journey. I wish there was room to write them all down here, but I feel that would be more of a book than a story. I have learned lessons of love, giving and accepting help, courage, fear, determination and giving in, commitment, honesty with my kids and giving them space to grow, reaching out, reaching in, the power of fresh air, good food and knowing that no matter what, my husband is here with me. I am a fortunate woman.

Thoughts and Hints for New Patients

I wish I had known how complicated and dangerous sarcoma was, and I wish I had sought opinions from larger sarcoma centers before going for my first surgery. I would encourage a friend just diagnosed to seek second opinions, read and understand your own medical situation, and advocate for yourself. And join a good support group like the Liposarcoma Support List, rely on sound information such as the Liddy Shriver Sarcoma Initiative's website. Find what inspires you to fight for your life. I like Crazy Sexy Cancer by Kris Carr, The Cancer Crusade, Lance Armstrong, and The Cancer Fight Club. There are many to choose from, so look around the web and find what inspires you. There are often free publications available as well. Most of all - believe in you.

Sign Teresa's Guestbook

Signatures in Teresa's Guestbook will appear here. Please share your thoughts!

Marian 12/08/2014 07:45 am
Hi my name is Marian, I have a gorges son Daniel just turned 18 in March 2014 he was diagnosed on 29 January 2014 with the same cancer the life it over for me he is in year 12 preparing for getting in the Special Force (Army) no words can explain it he is a dream child fool of life and smile he all ways use to smile every one use to adore him.
He had 6 weeks of radiation finished on 4 April surgery on 29 April 2014 recovered very fast back to school gym party's a gatherings enjoying life. But what is in his thoughts we don't know he doesn't want to talk. On 18 August he is due for regularly test to see if cancer has returned it is scary I can't sleep I have shivers when he is next to me it is hard to look at him o wander all the time for have long will I have him around.
Thank you for reading my story
John Gamez 08/08/2014 11:33 am
Hi, I appreciate your insight, and am part of the struggle .
I had a 17lbs lipo removed ( along with my r kidney) in 2003. Finally educated myself as to the demon I'm dealing with, and had a small lipo removed at the lipo clinic in Huston at the Anderson cancer center. Dr. Pollock is now my "Hoplite" surgeon whom I trust; he relocated to Ohio st., so in the next few weeks, he will be removing another lipo that keeps returning in the same area. His strategy is to reframe from radiation or kimo as a last effort. So far, I'm in agreement.
If anyone has had success with tx modalities that successfully fend off regeneration of this cancer, I would be open to trying an unorthodox method to deal with this in the future.
Wish me Luck---jg
Jennifer Dunn 31/05/2014 05:52 pm
Hi Teresa,
Thankyou for sharing your very inspiring and positive story, dealing with Liposarcomas.I have a similar story which began in 2007 when I was diagnosed with a 30cm retroperitoneal mass a further biopsy revealed a low grade Liposarcoma, I underwent surgery loosing my L kidney L Adrenal gland and several Lymph nodes.
In 2008 a follow up CT Scan confirmed recurrent disease surgery was performed and another Retroperitoneal Liposarcoma was removed. In late 2010 a follow up CT Scan confirmed further recurrent disease in the L Para-Aortic region resulting in more surgery with the removal of several more Lymph Nodes
Late in 2012 whilst playing golf I felt some shortness of breath and had some tightness across the chest, went to ED where a mediastinal [chest] mass was found measuring 13x8x10cm I was warned this particular surgery was extremely dangerous,my surgeons were also warned by fellow colleagues not to go ahead with it, with amazing skill it was removed successfully and I made a good recovery.
Unfortunately in 2013 another large Retroperitoneal Sarcoma was found this surgery resulted in the removal of my spleen part of the stomach and pancreas, after 2 weeks of convalescing I developed severe abdominal pain which was investigated in ED and dian diagnosed with a bowel obstruction resulting in more major surgery and was shocked when I woke up with a ileostomy bag, which was temporary thank goodness and had reversed in February. Another mass has now been discovered and just yesterday I had a colonoscopy to rule out that it wasn't attached to the bowel luckily it's not I can only assume its another Liposarcoma, which will be monitored with MRI Scans.
Unfortunately none of these cancers have been compatible to any therapies.
Despite all the surgery I'm enjoying life, and realize how very lucky I have been over the last 7 years, without my wonderful surgeons and the love and support of my family I wouldn't be here. I'm 63 years old have a wonderful husband 2 amazing daughters and 3 very beautiful grandchildren who I want to see grow up.
To conclude Teresa I'm very interested to know whether at any time in your life were you ever exposed to Radiation or Pesticides?????
I hope you stay strong and positive Best of luck.JD
Helene Anthony 23/04/2014 08:03 am
Your story is one of the few I have seen of a sarcoma in the abdomen. A close friend's 27 year-old son has just been diagnosed with this. He's awaiting the specific type of sarcoma but they suspect myxoid liposarcoma. His appear sot be presenting like your second recurrence - many small tumors throughout the abdomen (and some outside as well), and inoperable. On Thursday he is supposed to begin a 10-month chemo treatment composed of IV infusions every three weeks - they've already put a port in his neck for this. Is it possible for his family to communicate with you as he goes through this journey? Anything you could share about how to make the chemo treatments more bearable or what to do in terms of diet and fitness in between treatments, would be so helpful. Or how to stave off depression! So happy to hear you are healthy and living life to the fullest.
Helene (in NJ)
Nicholas 19/04/2014 02:14 am
I am a 13 years liposarcoma survivor. Early in 2000 a 4.25 kg encapsulated retroperitoneal mass was removed from my abdomen, followed by a 60 days intense radiation therapy. As I had about forgotten that incident a month ago I found out I have a 10 cm x 5cm x 2 cm attached half around the main aorta and two more smaller ones by the kidneys. No metastasis to any of my vital organs as yet and my blood works look very good. In two days I will have the biopsy results and will proceed with chemotherapy I have been told. Hang in there brothers and sisters there is live left after a liposarcoma.Nicholas

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