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Synovial Sarcoma - Online Support Group

Anyone had 3 recurrences and been clear for 3+ years?


#1

Hi, I'm new to this site. I have struggled to find anyone in a similar situation I have had 3 surgeries in 2000, 2006 and 2010, together with radio therapy in 2006. My last surgery was in the UK and was much more extensive than my first 2 which were in Ireland and unfortunately not by specialists. All have been in the same location, groin/inguinal region.

I am now 2 years post my last surgery and know my chance of recurrence is quite high but would be great to find someone who has achieved a cure after numerous recurrences?

AM


#2

Hi AM, welcome to the site. 2 years post your last surgery plus 12 years since you've had the disease is a good sign. A comment my oncologist made at one point was that he believed that SS metastasized early in the lifecycle and for some unknown reason some do not (or have the ability to) metastasis; the longer you hung on the better your chances i.e. and evidence that it wont. That you've had 2 recurrences of your primary tumour isn't great but as you point out the surgeries weren't done by a sarcoma specialist and they may have just left a small amount in and not achieved clear margins. Your personalised strain of SS seems to be slow in developing and I think that you're chances sound better than many. Cure is an interesting word with cancer. im not sure it we are ever out of the woods and weve got to learn to enjoy life with the potential threat of recurrence hanging over us. Good luck and I hope yours cant metastasis and that you are through the worst. Kind regards Gary


#3

Hi Gary,

Thank you so much for your response. It was not 12 years between the last 2 surgeries I may not have been clear in my post. I had surgery in 2000, 2006 and 2010 and radio therapy in 2006. I was really ignorant of the possible severity of my disease until I met the surgeon in London in 2010 so I lived in blissful ignorance of potential mets and recurrence until then. I guess I am fortunate it was not the type which tends to met elsewhere. Where mine is located is right beside the femoral nerve so if it does recur again I will lose my leg which is scary at 33!


#4

Hello my name is Marie. I had a synovial sarcoma in my head and neck which is so rare . Most are in the joints.I was not given a good prognosis. I had 3 months of radiation with no chemo available. I was told at the time they did not have enough trial and error as in other cancers.They were very aggressive with the radiation because of this.It was in my right parapharengeal space.in my neck.THIS WAS IN 1995...YES 1995.One doctor told me the truth. He said it could go to my lungs or brain and kill me in 6 months.I begged him to tell me the truth and he did.

He was the Radiation Doctor I first went to.I did not get my treatment at his hospital but chose Unn. of PENN in Philadelphia P.A

I have had 5 small masses removed in 17 yrs. All benign.I lost my voice due to radiation and surgery. My vocal cords were paralysed. I had injecitons of chemicals in them and went to voice therapy to learn how to train mt vocal cords to work several times. The injections are not permanent.fix.They only last for maybe 2 yrs.I also was a candidate for a gortex implant in my vocal cords to make it permanent.It worked ,But my body rejected it and it dislodged a yr later.I had it removed and more injections.The muscles one my right side of my neck dont work and put a constant strain on the left side because they do all the work. This tends to be painful but I am used to it.

I am happy to tell you people live many years with this disease.I am proof.Be confident and hopeful.Have faith.Pray .

I know it is a nightmare at times.It never goes away.It is always with us.You can live. I was 33 when I was diagnosed ,Im now 51.Keep the faith .Be your own advocate. Take good are of your mind ,body and spirit.Live well, eat well ,SIMPLIFY!!!!!

We all know how you feel.You are not alone in this.

God Bless

Marie DeMari


#5

At a sarcoma conference, a patient asked a specialist how they knew if a patient was cured. The specialist answered that when the patient dies from another cause, then the patient is considered cured :-)

This disease makes you understand you don't have control over your health or your death. That's a good reason to celebrate every day you are healthy and alive :-) Don't waste your time being scared!

Besides, as Gary said, if you haven't had a metastasis in 12 years, you should take this as a good omen.


#6

Good morning AM,

I am a 21 year survivor. I've only had what is considered "remission" twice during this period. I've had 7 lung surgeries, been on every standard chemo for SS and have had 5 radiations to different areas of my body. I was once told by a sarcoma surgeon who did 5 of my surgeries that it will return and there really wasn't a "cure." However, you can live with it which I'm living proof of that! The key is strengthing your immune system by eating well, taking supplements and exercise. This will at least give you a fighting chance. For the most part, however, being positive and living for the moment....very important! Look for the positive aspects in your situation and disregard the negative. What ever you can do to find that peace, do it! My husband is my reality check when I get weary and says "be thankful you have the opportunity," Keep your hope alive by living for each day, eating well and focus on the positive!

Bless you,

Gina


#7

Thank you all so much for your responses, it is such a relief and comfort to hear of all of you long term survivors and I feel lucky now that all my recurrences to date have been localised.

Wishing you all the best

Am


#8

Hi AM, Yes understand, what I meant to say is that although you've had SS for 12 years, it hasn't metastasize to another part of your body, that is very cool and maybe it can't!

AMH said:

Hi Gary,

Thank you so much for your response. It was not 12 years between the last 2 surgeries I may not have been clear in my post. I had surgery in 2000, 2006 and 2010 and radio therapy in 2006. I was really ignorant of the possible severity of my disease until I met the surgeon in London in 2010 so I lived in blissful ignorance of potential mets and recurrence until then. I guess I am fortunate it was not the type which tends to met elsewhere. Where mine is located is right beside the femoral nerve so if it does recur again I will lose my leg which is scary at 33!

#9

Hi AM, I have had SS localized in my left forearm for 17 years. It started with the first appearance in '96 at the age of 10. Disappeared until about 2003, which the doc thought was a neuroma. In October 2010, I was diagnosed with my first recurrence. Then again it appeared to me in May 2011 but nothing was done due to me being pregnant until November 2011, when I was diagnosed with my second recurrence. In July 2012, I was diagnosed with my third recurrence where clear margins were not obtainable so October 1st, 2012, I had my arm amputated above the elbow. I pray that my journey is over but if not, I will overcome like always! Stay positive and keep fighting!

Lots of prayers,
Brittany


#10

Gosh Brittany how do you cope with a small baby? Hopefully this will be the end of the issues for you. My consultant has advised I wait at least 3 years post surgery before I consider getting pregnant , now I’m thinking it might be selfish of me to have kids knowing I will suffer with this for life and may die early, tough call.


#11

Hi, I am a caregiver for my son who has SS. I believe that you having children is not selfish. You may surive for a long time and then what. I should have? Whatever time you have will be quality time. There is an old saying. "Is it better to have loved and lose it or to have never loved at all"

AMH said:

Gosh Brittany how do you cope with a small baby? Hopefully this will be the end of the issues for you. My consultant has advised I wait at least 3 years post surgery before I consider getting pregnant , now I'm thinking it might be selfish of me to have kids knowing I will suffer with this for life and may die early, tough call.

#12

Hi, my son also has SS in the head and neck. He is two years out, clear so far. Had surgery and radiation. Did not have clear margins after surgery. I also know another young man in Maine that has head and neck SS. Both were around 33 when they discover SS. Glad to hear you survived so long.

beechreader said:

Hello my name is Marie. I had a synovial sarcoma in my head and neck which is so rare . Most are in the joints.I was not given a good prognosis. I had 3 months of radiation with no chemo available. I was told at the time they did not have enough trial and error as in other cancers.They were very aggressive with the radiation because of this.It was in my right parapharengeal space.in my neck.THIS WAS IN 1995...YES 1995.One doctor told me the truth. He said it could go to my lungs or brain and kill me in 6 months.I begged him to tell me the truth and he did.

He was the Radiation Doctor I first went to.I did not get my treatment at his hospital but chose Unn. of PENN in Philadelphia P.A

I have had 5 small masses removed in 17 yrs. All benign.I lost my voice due to radiation and surgery. My vocal cords were paralysed. I had injecitons of chemicals in them and went to voice therapy to learn how to train mt vocal cords to work several times. The injections are not permanent.fix.They only last for maybe 2 yrs.I also was a candidate for a gortex implant in my vocal cords to make it permanent.It worked ,But my body rejected it and it dislodged a yr later.I had it removed and more injections.The muscles one my right side of my neck dont work and put a constant strain on the left side because they do all the work. This tends to be painful but I am used to it.

I am happy to tell you people live many years with this disease.I am proof.Be confident and hopeful.Have faith.Pray .

I know it is a nightmare at times.It never goes away.It is always with us.You can live. I was 33 when I was diagnosed ,Im now 51.Keep the faith .Be your own advocate. Take good are of your mind ,body and spirit.Live well, eat well ,SIMPLIFY!!!!!

We all know how you feel.You are not alone in this.

God Bless

Marie DeMari


#13

Thanks to everyone for their comments, fingers crossed and hope for the best I guess. Its the Lymphedema thats causing me issues now!


#14

Have any of your oncologists indicated it is genetic and possible to pass on to your children?


#15

You can't pass your sarcoma to your children but a very small percentage of people with sarcoma have a predisposition to it because of their genes, and so their family. Here is an article about it:

http://sarcomahelp.org/articles/sarcoma-predisposition-syndromes.html

You can be tested for these predisposition syndromes. Usually in these families, several members have some type of cancer at a young age.


#16

Thanks Elodie, I'm the only one in my family with this, I do have an aunt with breast cancer but thats it. You are lucky in the US as you have the best medical care and most up to date research.


#17

Hi AMH

Just been looking at list of members and seen you are in London. Although I live in Merseyside I had surgery for SS in October in London and am coming down on Monday in fact to start 6 weeks of radiotherapy at UCH. Seem your SS is in same area to me too!. You probably know UCH but if not I mean University College Hospital, opposite Euston. Will be there everyday Mon to Fri so if you around that way, and fancy a coffee, you can message me. With best wishes. Louise


#18

Hi Louise

I had my last surgery in the royal Marsden I don’t know UCH but happy to meet you for a coffee if you like. I’d this your first surgery?

Ann Marie


#19


Hi Ann Marie, think Royal Marsden is in partnership with UCH and the Royal National Orthpaedic Hopital in Stanmore, forming the London Sarcoma Service. I had my surgery in Stanmore last October. I am under Professor Tim Briggs and Nicky Willis is the specialist nurse. I know the London Sarcoma Service support group meetings, sometimes at Stanmore and sometimes t Royal Marsden. where in London do you live? i am from london originally so feels quite strange spending so much time there now! my mobile is 07931351203. i should be able to get about easily for first few weeks so yes would be nice to have a coffee, if you would like to. best wishes, louise.
AMH said:

Hi Louise

I had my last surgery in the royal Marsden I don't know UCH but happy to meet you for a coffee if you like. I'd this your first surgery?


Ann Marie