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Synovial Sarcoma plus metastases in both lungs

TinaHTW
Posts: 2
Joined: Jul 2003

I live in the UK. I developed a small lump on the inside of my L foot about 2 years ago. It got larger and so I saw my GP who sent me to a Podiatrist who diagnosed it as a Ganglion. I had an MRI Scan and was put on the urgent waiting list for operation. The lump grew and got considerably larger, in fact it was the size of a duck egg. Having heard nothing for 9 months about my operation or when it would be, I made a call to the hospital and was told they would investigate the matter and call me back. They did call back and I was asked to come in for admission in 2 weeks time. I somehow think I was not put on the waiting list. The lump was excised and three weeks later I have been informed it is was a synovial sarcoma. After being referred to Oncologists, they now inform me that my CT Scan shows secondary metastases in both lungs. Not only that, but the surgeon who operated did not excise a wide enough margin and there are still bits of cancer left in my foot. I am about to start Radiotherapy for that. I am bringing a Clinical Negligence claim against the surgeon who misdiagnosed it as a Ganglion. I have also been told that chemotherapy is out of the question as they have given me 1 year to 18 months to live and as I am pretty fit at the moment, they do not want to reduce my quality of life. I feel it is the end of the world and that there is no hope left for me. Can anyone tell me otherwise?

jgatkins
Posts: 3
Joined: May 2003

Tina,

It sounds like your podiatrist is not fit to even treat animals. Quick diagnosis and action is always best. But know your not alone. I lost my mother in May 2001 to cancer. She complained about pain in her arm. She went to her primary physician and he told her she had bersitis. As she compalined more he sent her to physical therapy. By the start of June she ended up in the hospital. Still then they balmed her problems on congestive heart problems. After two weeks someone finally decided to take CT scans. By then she had cancer that spread to her lungs.

My mother's problems probably helped to save my life. When I found a painful lump in my thigh last July I went to the doctors immediately. Thank God I had great doctors. I had surgery and radiation and so far I am clean.

To use a phrase from the sports world, "It's not over until its over!" I'm sure circumstances seem dire at the moment. My advice is to seek out another opinion. Find the best doctors in the UK who specialize in cancer treatment and get their opinion.

Find a group you can talk to if you feel the need for emotional support. But in the mean time live your life. There are many people who have been told they would never make it and have beat the odds. Many have been told they would have to learn to accept that their life would be different after treatment. But the spirit of the the body and human mind are powerful. Look at Lance Armstrong. He had cancer. Who would have ever imagined he would come back from it and win the Tour De France again and again.

Stay strong and don't give up!

stevelamont
Posts: 3
Joined: Aug 2003

Hi.

We also are in UK and had very similar experiences to you.

My wife had a lump on her left knee also diagnosed as ganglion. Grew to size of an orange before they operated. Finally they found out it was lipo sarcoma.

She had a spread to her chest wall in 98 and had surgery twice.

In 2001 she had tumours in her pelvis, spine and lungs. Spread to her lymph and abdomen in 202 and she finally went on chemo as a last resort.

At the same time we started a well-researched program of supplements. Maybe it was the chemo or a combination of chemo and supplements but against all the odds she is now clear.

I know if I was in your position I would immediately start a supplement and de-tox programme.

I would be happy to help further if you want any more info.

Steve Lamont
steve.lamont@pyinna.co.uk

rh8585
Posts: 5
Joined: Nov 2008

Steve, if you could suggest what supplements to take I would really appreciate it. Thanks so much, Linda

ttamng
Posts: 10
Joined: Nov 2009

Hello,
My name is Tammy. I just read your post on www.csn.cancer.org/node/140751 website and found out that your wife had the same problem as my sister currently has. In 2001, my sister had several lumps on her left foot and the Dr. said that they were normal tumors. She went in for surgery, just to take the lumps out. In 2006, those lumps came back larger and finally they found out that was cancer. They cut her foot to her ankle and she went back for exam after that they told her that everything was clear. In mid 2008, she had dignosed that it had spread to her left lung. She finally went on chemo in Oct. of 2008.....She is very weak now and they has stopped the chemo after ten times.
She lives in Vietnam. I am so sad since I could only help her to pay some of the chemo cost and cannot see her because I live too far away. The last couple of days, she is more sick and she doesn't have enough blood count.
I just read your post and hope that you could tell me more about the supplements. So hoping that with chemo and supplements could help her.
Thank you very much!
Tammy

lcg
Posts: 1
Joined: Jan 2010

Hi I have just joined tonight and i am looking for advice i am a thirty year old,mother of two who has been treated with cancer for the last 5 years i have had chemotherapy, surgery and even tried two clinical trials so i was very relieved to see that there is something else that i could try. Please could you let me know the details of these supplements and detox programmes as i am very keen to get started on something soon. thanks again for your help in advance i just have to keep going for my kids and my husband x

Gem
Posts: 1
Joined: Feb 2010

Dear Steve
Would you suggest any supplement or a detox programme? My wife had 4 operations and chemo/raditherapies. We are now looking for any supplements and/or a detox programme...

Thanks

ncaines
Posts: 3
Joined: Apr 2011

Hi, my name is Natasha & I joined this group after reading your post. You mentioned Supplements and De-tox programme helped your wife. My husband was diagnosed with Synovial Sarcoma in his hand in '08. They removed the tumor, followed by 25 rounds of radiation and then the index finger and with skin grafting it doesn't look that bad. In Jan '10 we were told that mets had spread to both lungs, 7 spots between both. He did 6 rounds of chemo then took a 3 month break as the chemo had made the spots dormant. 2 days after having our first baby in Sept. '10 we were told that the spots were growing so they started another type of chemo. He finished it up in March and it was working at the time. He has another routine scan in May and we are hoping the spots are still dormant. I would really like some more infor on the supplement & de-tox programme you mentioned.
Thanks, Natasha

Oddrey
Posts: 1
Joined: Jan 2004

I got synovial sarcoma in my spine three years ago. The doctors at my local hospital kept trying to tell me it was all sorts of different stuff but cancer never entered their mind. However my brother died of leukemia so mom and I figured what i had was a tumor and we went to Ellis Fischel Cancer Center in Columbia, MO USA to see if they could diagnose me. They did and they also operated on the tumor, getting clear margins, within two weeks. I then began six weeks of radiation followed by four months of in-patient heavy-duty chemo. I was considered cancer free until just two weeks ago when they discovered six tumors in my lungs. They again managed to remove them with clear margins but I feel like I am just playing a waiting game now. How long until my next tumors show up? I won't give up hope, and I don't feel you should give up hope Tina. I'm 19 and not ready to die and you shouldn't accept death either. Get a second opinion, pray, try alternative medicine, try new and experimental medicine, and laugh as MUCH AS POSSIBLE. I believe humor is a key to health. I will tell ya though, chemotherapy is rough so it is hard to know what to do to balance that with a decent quality of life. Follow your heart, find some doctors you can trust, and laugh. And definitely never give up hope- it's not worth it. Although much time has passed since you posted your message, email me if you wish to.
Audrey
abf91700@cmsu2.cmsu.edu

kchristina
Posts: 1
Joined: Nov 2009

I am a 47 year old female. I had synovial sarcoma in my right forearm around my ulnar nerve. I had resection surgery and they got it all. I didn't have any other treatments. I now have had a cough for over a month and my muscles ache so bad that I can hardly go some days. I don't go back to the doctor until January. I am afraid. I do not know the symptoms of metastases in the lungs. I was told I had 85% of survival but now my health seems to be failing me and I am getting scared. I proably need to call my doctor but I am scared of what they may say.
Kathy

ttamng
Posts: 10
Joined: Nov 2009

You should go to see the doctor immediately. My older sister, who is 43 years old, and had her left foot remove in 2005 due to synovial sarcoma. After that, the doctor told her everything was ok. However, in 2008, she had cough and lost weight. She went to check with the doctor, after the ct scan, they found out that it was metastased to her lung. She is on Chemo treatments now. Hope everything is ok for you.
Tammy

katie14
Posts: 5
Joined: Jul 2002

Wow Im 15 now but when i was 12 i had synovail cell sarcoma. At first they thought it was a gangly and they told me that they were 99% sure it was not cancerous but they took it ou and it turned out to be cancerous. I went through chemo and radiation. I wish you the best of luck
in christ
katie s

twicebitten
Posts: 5
Joined: Mar 2004

I had synovial sarcoma that also began as a lump on the side of my foot that many doctors Dx as a ganglion cyst. It wasn't until months later that a surgeon decided that since the lump bothered me (it hurt to wear shoes) he would remove it. When he got in there he knew that the mass was suspicous and more involved. The pathology confirmed that I had synovial sarcoma. I went immediately to Sloan Kettering Cancer Center in New York City for an opinion. They rec amputating below the knee and 10 months of chemotherapy. I followed this recommendation. Luckily, I had no sign of disease anywhere else in the body. This was in 1981. I am now 35 years old. You should go right away to a cancer specializing facility and fight with all your might! Good luck and God Bless!

TinaHTW
Posts: 2
Joined: Jul 2003

Thank you to everyone who has replied to me. I thought I would update everyone. I started a course of chemo in January of 2004 which lasted until July 2004. I was on Idoxrubicin and Adriamycin. It wasn't as bad as I anticipated. The worst thing was losing my taste. The things I dreaded happening such as being sick were not a problem, losing my hair was not as bad as I thought it would be and I counted at least 18 side effects thoughout the treatment, but the worst was losing my taste. Everything tasted like rancid wallpaper - not that I know what rancid wallpaper tastes like, but it's how I would imagine it tastes. The chemo reduced some of the smaller tumours and also some of the bigger ones. Within 3 months of finishing the chemo my hair came back very very soft like babies down and very very curly. Unfortunately after 3 months of finishing treatment one of the bigger tumours started to grow again, so I am now into my 1st line chemo and have just had the 1st regime and am due to go in and have the 2nd on the 220th Dec. The last chemo was given as an out patient, but this is being done as an inpatient over 4 days. So far I am doing ok, I am feeling alright and I am being very positive about everything. I am also keeping my eyes and ears on what is happening with the trials of Iressa. If anyone has any more up to date info, please post here.

rh8585
Posts: 5
Joined: Nov 2008

Just hang in there. You have given me hope for my grandson Willie.

rh8585
Posts: 5
Joined: Nov 2008

My heart just breaks for you. My 15 yr. grandson has it in his calf and both lung. The prognosis is grim with chemo and radiation. You will be in my prayers as well as Willie.

transdriven
Posts: 1
Joined: Jun 2013

 Hi..Im frm india.My uncle has been diagnosed with synovial sarcoma on his knee with metastasis in both lungs.Wright now nothing is going through my mind.He'l be on chemo soon.Im just worried about his survival.I really wish he gets clear.

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