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Synovial Sarcoma - Online Support Group

New to site ansd scared silly


#1

My diagnosis was in September and I really did not know anything except that I had cancer. As I've learned more, I admit I am scared. Surgery was 7 weeks ago. The tumor was 8cm. The colon also had to be resectioned. Pathology came back with clear margins. The surgeon implanted markers "in case radiation was needed later". Recovery has been difficult and I dislike wearing ab wraps 24/7 but at least I am alive.

What comes next? How do I navigate the ins and outs? Just finding this site has given me a lift. I'd appreciate any feedback.


#2

It's normal to be scared. Don't look too far in the future. Take one day at a time. Try to enjoy every day like it was a gift. You may be already cured but nobody can tell. Accept uncertainty. When is your next follow-up?


#3

Hi Ellen,

The good thing is margins are clear!!.. I had my tumor in the left lung. This happened in 2012 with margin clear. Defiantly scary to say the least. Clean so far. My suggestion is ask a lot of questions and research as much as you can on line. This is a great web site and very helpful people. Ask a lot of questions when it comes to radiation because it can damage more than it can help.

It always take time to heal but we do and take each day at a time.

Georgia


#4

Welcome,

Everyone here has been, or is scared, as cancer is a terrorist. Elodie is 100% correct that you may be cured and in her recomendations. Please know that you are in my prayers.


#5

Hi Ellen,
I agree with Elodie. One thing about hearing the word “cancer” is that we realize just how precious our time is on earth. My 14 y/o son was diagnosed after a surgery to remove a cyst came back as cancer. (We are at MD Anderson as I type this). We are looking at a definite second surgery so what a blessing that you don’t need one. I believe that attitude affects our lives either positively or negatively. Make a point to pick out things to be thankful for each day. Yes, sometimes those things may be small, but that doesn’t matter as much as the attitude of thankfulness. Ask questions and research. Just don’t get in the mindset that the doctors know everything that is in your best interest. You are your own advocate. That’s just my two cents. We are planning on having the second surgery and then going the holistic route because we feel that is the best route for our son. I will be praying for comfort and wisdom for you.


#6

Dec.23 - Merry Christmas!

Elodie Espesset said:

It's normal to be scared. Don't look too far in the future. Take one day at a time. Try to enjoy every day like it was a gift. You may be already cured but nobody can tell. Accept uncertainty. When is your next follow-up?


#7

Great advice. Thank you and good luck with your son. You'll be on my prayer list. You are in good hands at MD Anderson so keep the "Hope and Faith". Please stay in touch. We may meet up at MDA in the future.

HopeandFaith said:

Hi Ellen
I agree with Elodie. One thing about hearing the word "cancer" is that we realize just how precious our time is on earth. My 14 y/o son was diagnosed after a surgery to remove a cyst came back as cancer. (We are at MD Anderson as I type this). We are looking at a definite second surgery so what a blessing that you don't need one. I believe that attitude affects our lives either positively or negatively. Make a point to pick out things to be thankful for each day. Yes, sometimes those things may be small, but that doesn't matter as much as the attitude of thankfulness. Ask questions and research. Just don't get in the mindset that the doctors know everything that is in your best interest. You are your own advocate. That's just my two cents. We are planning on having the second surgery and then going the holistic route because we feel that is the best route for our son. I will be praying for comfort and wisdom for you.

#8

George,

Thanks for your reply. I do and will question as it is in my nature. I'll follow your advice and do my homework.

Congrats on being clear for two yeras!!!!



George said:

Hi Ellen,

The good thing is margins are clear!!.. I had my tumor in the left lung. This happened in 2012 with margin clear. Defiantly scary to say the least. Clean so far. My suggestion is ask a lot of questions and research as much as you can on line. This is a great web site and very helpful people. Ask a lot of questions when it comes to radiation because it can damage more than it can help.

It always take time to heal but we do and take each day at a time.

Georgia


#9

AGD,

I love the descriptor of "terrorist". It fits.

AGD said:

Welcome,

Everyone here has been, or is scared, as cancer is a terrorist. Elodie is 100% correct that you may be cured and in her recomendations. Please know that you are in my prayers.


#10

Great advice! You are your own best advocate. Do your research and ask questions and keep asking them. There are many treatment options and you need to understand them. You can win this fight!

HopeandFaith said:

Hi Ellen,
I agree with Elodie. One thing about hearing the word "cancer" is that we realize just how precious our time is on earth. My 14 y/o son was diagnosed after a surgery to remove a cyst came back as cancer. (We are at MD Anderson as I type this). We are looking at a definite second surgery so what a blessing that you don't need one. I believe that attitude affects our lives either positively or negatively. Make a point to pick out things to be thankful for each day. Yes, sometimes those things may be small, but that doesn't matter as much as the attitude of thankfulness. Ask questions and research. Just don't get in the mindset that the doctors know everything that is in your best interest. You are your own advocate. That's just my two cents. We are planning on having the second surgery and then going the holistic route because we feel that is the best route for our son. I will be praying for comfort and wisdom for you.

#11

Hi Ellen,

It's hard to hear the word "cancer", I'll be honest, it was even harder to hear SS and do my research and see what it says out there about our cancer. I was diagnosed in July with SS primary in my lung. I was pleasantly surprised to see not only a support group, but to see so many long term survivors. While each case is different, it's nice to see there is hope. You've gotten clear margins in your surgery, that is excellent!


#12

Three month scan and everything is clear!!! There was a little inflammation in the lower lobe of the right lung, but doctor not too concerned. We will watch for it with the next scan in June. Life is so good. I am convinced that knowledge, support and a positive attitude made a big difference. This site has helped me so much. Thank you all, especially Elodie.


#13

YEA!!!!!! Great news - keep it going. Just so you know I've had inflammation in my lungs that comes and goes.

Celebrate!


Ellen said:

Three month scan and everything is clear!!! There was a little inflammation in the lower lobe of the right lung, but doctor not too concerned. We will watch for it with the next scan in June. Life is so good. I am convinced that knowledge, support and a positive attitude made a big difference. This site has helped me so much. Thank you all, especially Elodie.


#14

Thanks for sharing the great news Ellen! Like Jim said, it's time to celebrate :-)