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Soft tissue sarcoma

Soft tissue sarcoma

Posted by Diane410 on Nov 12, 2015 11:22 am

My son (52 years old) was very recently diagnosed with a soft tissue sarcoma.  Does anyone have any experience with this type of tumour?  Thank you.

Re: Soft tissue sarcoma

Posted by shellylynn on Nov 18, 2015 1:07 pm

Sorry I have never heard of it. 

Re: Soft tissue sarcoma

Posted by breadoven on Mar 21, 2016 2:43 pm

Yes, I have soft tissue sarcoma.  I was diagnosed in August, 2015,,had surgery to partially remove the tumor and have undergone 12 rounds (6 cycles ) of chemo.  I am  74 and have been physcally active and eating healthy meals all of my life.  Now I am waiting to find out the results of a CT scan.  My medical team is conflicted about continuing the chemo.  My daughter and son-in-law are adament that nutriion and herbal medicines are the way to proceed.  I have stopped consuming sugar, except for maple syrup, and dairy products.  I have no way of knowing if these measures will be affective.  
I have been fortunate in that my medical team prescribed medicine to combat the side effects of chemo and other than being tired for 4 days after the chemo sessions and needing extra hydration at home, the side effects have been manageable.  I have energy to tend to household chores and visit, and plan for the spring garden.  My type of sarcoma is very aggresive and I am already beyond the December end date predicted in August of 2015.  I am trying to educate myself about leomyosarcomas.  Here is a web site I found that is devoted to sarcome information. http://www.lmsdr.org/whatis_leiomyosarcoma.php Hope this will help.

Re: Soft tissue sarcoma

Posted by Pearl on Oct 22, 2016 1:26 pm

 I am new as of yesterday.  I am waiting for a surgery call to have a soft tissue mass (either lipoma or liposarcoma) removed from underneath my right arm. Have had a mammogram, ultrasound, MRI with contrast and biopsy - which showed inconslusive.  After the surgery I wait another 2 weeks to find out whether I have liposarcoma, subtype, grade etc.  There is so much waiting involved with navigaviting our health care system here in Ontario.  Before I found this site, I joined a few groups Sarcoma Alliance, Sarcoma Support Initiative, Sarcoma Survivors and Sarcoma Q &A.  All are great groups and I have learned a lot from the all posts.

Re: Soft tissue sarcoma

Posted by Pearl on Nov 5, 2016 12:55 pm

I have a surgery date of November 22, 2016 to remove the mass underneath my arm.  Then I wait another 2 weeks to find out whether it is lipoma or liposarcoma.  I'm ready to get this done, the waiting and the unknown is the worst part.
 

Re: Soft tissue sarcoma

Posted by Lacey_adminCCS on Nov 7, 2016 10:32 am

Welcome Pearl,

I'm glad you found our community as well as other supports you find helpful.

Waiting for things to get started and to get results is so hard! Good to hear that you're ready to get it done! Being mentally prepared is important. 

How will your treatment plan differ if its one vs the other?

Please keep us posted,
Lacey

Re: Soft tissue sarcoma

Posted by Pearl on Nov 7, 2016 2:37 pm

Lacey_adminCCS:
Welcome Pearl,

I'm glad you found our community as well as other supports you find helpful.

Waiting for things to get started and to get results is so hard! Good to hear that you're ready to get it done! Being mentally prepared is important. 

How will your treatment plan differ if its one vs the other?

Please keep us posted,
Lacey

 Hi Lacey:

Thanks for your welcome.  If my mass is lipoma, from what I understand, it is a fat deposit and no further treatment is necessary as it is usually benign.  Just removal and healing.  If it is liposarcoma, then the pathologist will determine the sub-type and grade.  My sarcoma surgeon said that normally radiation is the course of treatment, if he can't get clear margins.  When the mass was biopsied, the results came back indeterminate, so that has given me some hope, but right now all I want is that thing out of me and I'll deal with whatever it is.  So two weeks from tomorrow night, it will be gone.  I'll keep in touch.  Thanks.  Pearl.
 

Re: Soft tissue sarcoma

Posted by Shauna5 on Nov 7, 2016 10:25 pm

Hi Pearl
The waiting is the worst part.  I was diagnosed Aug.29th with Leiomyosarcoma in my leg.  Had my surgery on Sept.15th.  I was crazy to live with.   Crying all the time.  The only thing I can recommend is keeping busy to take your mind off of things.  To much thinking about it is not good.   I found I wanted to talk about my cancer all the time, but I don't think others did.  After surgery waiting to hear about clear margins and possible further treatment is all consuming.  My borders were clear they did not recommend radiation. Still healing as my incision was about 9" long and leg still swells alot.  I can relate when you said all you can think about is getting it out of your body!  Good luck Pearl and I wish for you a successful surgery!  
Shauna

Re: Soft tissue sarcoma

Posted by Lacey_adminCCS on Nov 22, 2016 11:09 am

Hi Pearl
Today is surgery day. I hope everything goes well, and you receive good news in the next couple weeks.

Shauna5,
 How is the healing going? Still experiencing swelling?

Thinking of you both,
Lacey

Re: Soft tissue sarcoma

Posted by Pearl on Nov 28, 2016 3:59 pm

Hi there - surgery went well on Nov. 22.  I saw my oncologist the next day and he said the mass was deeper than he thought.  A JP drain was installed during surgery and my husband is taking care of the emptying, measuring and recording of the drainage.  He also is looking after milking the drainage tube.  I have daily nursing care from St. Elizabeth and my nurse said it looks like she may be able to remove the drain on Wed. Nov. 30, as long as my drainage output stays at less than 30 ml per 24 hour period.  To-day is about the first day I have felt semi-human, so I am on the mend.  My incision stitches are dissovling and the tape is starting to fall off (takes about 7 to 10 days).  I go back to Kingston on Dec. 8 to receive the pathology report.  Will let you know it goes.  Pearl.

Re: Soft tissue sarcoma

Posted by Lacey_adminCCS on Nov 28, 2016 4:20 pm

Hi Pearl,

Sounds like your husband is taking good care of you :) Nursing as a second career choice maybe? So glad to hear things went well and you are feeling semi-human today. Fingers crossed that you can have your drain removed and your follow up goes well. Stay in touch.

Take care,
Lacey

Re: Soft tissue sarcoma

Posted by Pearl on Nov 30, 2016 7:26 pm

Pearl:
Hi there - surgery went well on Nov. 22.  I saw my oncologist the next day and he said the mass was deeper than he thought.  A JP drain was installed during surgery and my husband is taking care of the emptying, measuring and recording of the drainage.  He also is looking after milking the drainage tube.  I have daily nursing care from St. Elizabeth and my nurse said it looks like she may be able to remove the drain on Wed. Nov. 30, as long as my drainage output stays at less than 30 ml per 24 hour period.  To-day is about the first day I have felt semi-human, so I am on the mend.  My incision stitches are dissovling and the tape is starting to fall off (takes about 7 to 10 days).  I go back to Kingston on Dec. 8 to receive the pathology report.  Will let you know it goes.  Pearl.

 The nurse from St. Elizabeth Homecare removed my JP drain to-day.  Painful, but glad its gone.  No more bottles to empty, tube to milk and get tangled up in.  Time to start healing that part now. Pearl.

Re: Soft tissue sarcoma

Posted by Lacey_adminCCS on Dec 1, 2016 10:39 am

Hi Pearl,

Another step forward in the right direction! Now to see the doctor on December 8, sending positive vibes to you :)

How is your mobility in the arm? Are you able to use it?

Lacey

Re: Soft tissue sarcoma

Posted by Pearl on Dec 1, 2016 8:16 pm

Lacey_adminCCS:
Hi Pearl,

Another step forward in the right direction! Now to see the doctor on December 8, sending positive vibes to you :)

How is your mobility in the arm? Are you able to use it?

Lacey

 My arm mobility is good.  I'm not supposed to lift anything over 10 lbs or raise my arm above my breast level at this point.  I'm right handed, so it is hard to wash my hair with the left, but I'm managing.  One thing I really miss at this time of year is my knitting and cross stitching.  Thanks for the positive vibes for Dec. 8.  Will keep in touch.  Pearl.
 

Re: Soft tissue sarcoma

Posted by Pearl on Dec 9, 2016 2:57 pm

 Hi there - I am over the moon.  The results of the mass removal on Nov. 22 were good.  It was a lipoma with no indication of malignancy.  Now I can enjoy Christmas.  I know a lot aren't as lucky as myself and I certainly do wish you all the best in your separate journeys.  Merry Christmas everyone.
 

Re: Soft tissue sarcoma

Posted by Lacey_adminCCS on Dec 9, 2016 3:16 pm

Pearl,

Very happy for you, what a relief!

Merry Christmas and Happy Holidays,
Lacey