Stories needed for arm sarcomas

24242
24242 Member Posts: 1,398
edited March 2014 in Sarcoma #1
I am just doing what the breast cancer board is good at doing and that is posting a new thread because jumping around get confusing. I am looking for any information on sarcomas especially but interested in any of the arm bicept area.
I am interested to hear about the symptoms, the diagnosis before truly knew it was cancer and how long it took for doctors to finally biopsy and look to find out exactly what it is.
I am 50 with new tumors in my arm one actually was in lymphnode but they biopsied and benign but the huge one they won't biopsy because he says can't see on MRI though I read report and they area comes back inconclusive. I am 14 year breast cancer survivor of stage 3 with 11 out of 21 nodes and as it turns out had one of the worst forms of aggressive breast cancer with far less rate of survival than they thought back then since I was apart of a study they did back then so they could learn.
They believe a fat cyst or lympoma nothing to worry about but the last time around had they checked the fibrous cyst they didn't worry about I might not have had to go through all I did and left with the fall out though lucky I manage to live pretty good.
I was diagnosed with several arthritic conditions, several nerve disorders and pain riddled at times now all fall out from treatments. Mastectomy, chemo coctail and radiation and I was just that sensative that I got everything you could get almost as side affects. Oh well I have done very well till now and these new lumps are terrible causing all kinds of pain numbness and physical inability but yet they don't want to biopsy this mass or take it out. Oh yes found out my shoulder is screwed and need surgery so this will force them to make sure I do not have any form of a sarcoma or the new orthopedic surgeon probably won't touch me.
My last cancer did not fit the criteria for invasive ductil carsinoma. If any of you are in pain there are things we can do and seeing a very good Pain Specialist is an amazing thing. My GP did nothing for me though he was there to see me and take care of me through my treatments. I begged him to send me back to cancer clinic 3 years after finishing treatments because my quality of life was terrible hardly able to work. All he could think to give was antidepresants and they almost made things worse adding migrains to the mix something I never had before then. I knew it was NOT anxiety that they think we all suffer. I know my body and know it that well that this time too I feel like somethin is terribly wrong and they all look at me like I am crazy and how could I think I could have breast cancer or cancer again. I was totally offended when the old oncologist asked me several times why I thought it could be breast cancer. I laughed in her face and said that the chances of it being breast cancer were slim since I had done all I could to minimize the return of it with the treatments I accepted as my fate. It baffles me when I know friends of mine who have had no less than 24 bipsies on her breast a second time around because they doctor just didn't like what he saw though it had already come back benign. She is now being treated for breast cancer in both breast instead of just the one that had come back stage 1 they also found tumor hiding under that suspect area that didn't show up on any of the scans.
It is totally not comforting and I have no faith in the system and don't know why I have to kick up a fuss because I need to know what it is they may not but I do this time around.
thanks for reading and adding anything you can.
Tara

Comments

  • jenmessley
    jenmessley Member Posts: 8
    #2
    arm
    I agree with you it should be biopsied. I however do not think that it is your breast cancer speading. It would be an unlikely place for it to go. I am like you. When something worries me I must have it looked at. Only then can I relax.I think that is only sensible after any cancer.
  • btill48162
    btill48162 Member Posts: 5
    #3
    Pursue Further
    Hi Tara! In 1996, at the age of 10, I was diagnosed with Synovial Cell Sarcoma in my left forearm. The place was a nodule about the size of a nickel under the skin. Felt like a cyst according my pediatrician at the time. I was then referred to an ortho to have it removed but when he got in there it was no cyst. I can remember anytime I would be playing and the spot would get hit how tremendous the pain was down my arm and into my hand. Come to find out this was because the cancer had wrapped itself around my ulnar nerve. I had the appropriate treatment and surgeries done and was cancer-free in 1997, going on 12 years old. About 7-8 years ago I had a nodule pop up in the same location. Terrified, I ran to my doctor to have it checked out. After watching the location for 5 years and no growth, we ruled it as a "neuroma". About 4-5 months ago I noticed that my pinky finger on my left hand was going numb and the nodule seemed to hurt even more if was to get bumped. The MRI showed that the place had grown in length. I had an open biopsy done yesterday and found out that I have a recurrence but not sure of what kind. The doctor said that him and the pathologist believes that it may be Spindle Cell Sarcoma. It has once again attached itself to the ulnar nerve. When the doctor first looked at my MRI, he believed that it may have not been anything to worry about but thankful that he was concerned enough to pursue further. I do believe that this is something that should be biopsied and especially with your previous history of cancer whether it was in your breast or not. Cancer can always come up in a different form. Don't listen to the statistics and pursue this further yourself, even if that means finding another doctor.
  • 24242
    24242 Member Posts: 1,398
    #4
    btill48162 said:

    Pursue Further
    Hi Tara! In 1996, at the age of 10, I was diagnosed with Synovial Cell Sarcoma in my left forearm. The place was a nodule about the size of a nickel under the skin. Felt like a cyst according my pediatrician at the time. I was then referred to an ortho to have it removed but when he got in there it was no cyst. I can remember anytime I would be playing and the spot would get hit how tremendous the pain was down my arm and into my hand. Come to find out this was because the cancer had wrapped itself around my ulnar nerve. I had the appropriate treatment and surgeries done and was cancer-free in 1997, going on 12 years old. About 7-8 years ago I had a nodule pop up in the same location. Terrified, I ran to my doctor to have it checked out. After watching the location for 5 years and no growth, we ruled it as a "neuroma". About 4-5 months ago I noticed that my pinky finger on my left hand was going numb and the nodule seemed to hurt even more if was to get bumped. The MRI showed that the place had grown in length. I had an open biopsy done yesterday and found out that I have a recurrence but not sure of what kind. The doctor said that him and the pathologist believes that it may be Spindle Cell Sarcoma. It has once again attached itself to the ulnar nerve. When the doctor first looked at my MRI, he believed that it may have not been anything to worry about but thankful that he was concerned enough to pursue further. I do believe that this is something that should be biopsied and especially with your previous history of cancer whether it was in your breast or not. Cancer can always come up in a different form. Don't listen to the statistics and pursue this further yourself, even if that means finding another doctor.

    Thanks for your thoughts
    Well I do know that I will have my second opinion when I see the new ortho surgeon since finding out my shoulder has a problem and surgery is needed but will not due do at my cancer clinic because it isn't cancer.
    I do know that he won't want to get involved unless he is sure I am cancer free. So I guess that will be the other opinion since don't feel that fat mass or whatever is a problem so I am not fighting with them. I got the tests and biopsied what they could but still didn't biopsy the big mass. Just quitting thinking about it all the time and finally able to work again has helped. Truly I won't do surgery unless necessary since I get side affects from that too. I have had a raging staph infection so don't need to do any of that if that can be helped. Worse bugs out in hospitals these days than back then.
    Thanks again for your advice
    Tara

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