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Lymph nodes


#1

Has anyone had their cancer spread to their lymph nodes? If so was it close to the original tumor site

or was it in a unrelated part of the body?


#2

Are you asking because you have an enlarged lymph node?


#3

I experienced metastasis to the lymph nodes in the neck. There were several nodes affected and they grew pretty big. I had radiation which killed the tumors. I can still feel small knots, but I'm assured by my radiation oncologist that its scare tissue left from the treatment. It took about 4 months to visually see the decrease in my neck. I had a large area of radiation burn which cleared up nicely. My orginal tumor was in the right thigh and I also have several other tumors in different parts of the body which are stable. It was a frightening experience, but I work with a good team of doctors.


#4

Thanks Fighter91 & Elodie, I have had one lymph node in my neck that was a little enlarged to the touch. That 1 has now gotten bigger and another lymph node below is now enlarged as well. I have told 4 of my various cancer doctors about the first 1 but they didn't seem concerned.They said it's rare that it spreads to the lymph nodes.I find it ironic that when they are dealing with a rare cancer as this that they still follow what is the typical progression of the disease. I'm going for scans in 2 weeks if it's still enlarged I will mention it again.

Best wishes


#5

Camiam,

Go with your gut! I complained about a small enlarged lymph node for about 3 visits with my oncologist over a period of 5 months. I was finally told that I was basically worrying too much bc it was unlikely to be SS. The radiologist that read the CT called it a reactive lymph node...basically, an infection after one has had a severe cold and he said it would clear up. Since I had just gotten over a cold, I dismissed it and felt a little at ease. Nevertheless, it wasn't until I was on vacation and I started feeling other enlargements in the area and I mentioned it to my brother-in-law who is a MD. I kept telling him how the Drs. were not taking my concern seriously. He sent me for a sonogram of my neck and the results came back noting that it was possibly metastatic disease. When I returned home, a biospy was done which confirmed the findings. You need to get someone who will take your concern seriously...we know our bodies better than anyone else! Because of this experience, I've learned to do whatever it takes to get someone who will listen and follow-up. You do what will put to at ease. Yes, spreading to the lymph nodes is rare for SS, but that doesn't mean it can't happen.


#6

SS was in my groin muscle and was taken out. The surgery created a huge saroma in the area and radiation has made it tough to heal. After almost 4 months from surgery I still have 10cc of serous fluid leaking out each day. Scans show enlarged lymph nodes and lots of pockets of fluid in area but no mestasis of SS in area (lungs muscles or lymph nodes, etc). Follow up with different drs to get best/various reports!


#7

My tumor was in my right groin, I had to have the SS remove 2 times in the same area. I did seven weeks of radiation and 5 rounds of Chemo. Right now I am cancer free, but all my scans are showing three enlarge lymph nodes in the same area. I am also being told not to worry about it and that sarcomas travel in blood not lymph nodes, I am not a 100% convinced of this. I would just make sure you are watching it to see if it is growing, if it is growing, push to have it looked at more seriously.


#8

Happy Birthday Camiam. Did you find out what was the problem with the enlarged lymph nodes? Are you still in remission?


#9

Hi Elodie, thanks for the birthday wishes :). It looks like I’m still in remission. Although 2 of my lymph nodes are still a bit enlarged the docs are not concerned. I’m thinking of trying to get scans done myself but not sure of the cost.


#10

The cost may vary greatly from one place to another. It's worth shopping around. Besides you still may need a prescription :-(


#11

I was diagnosed with synovial in my left thigh a little over a year ago and had the tumor removed and went through radiation and now I have a lump in my lymph node in my groin area right above my left leg. I am not sure what is going to happen yet.