spindel cell sarcoma NOS

bethmacd
bethmacd Member Posts: 1
edited March 2014 in Sarcoma #1
I am a 52 year old gal who just joined this group a moment ago...a spindle cell sarcoma (NOS, not otherwise specified)and have been on this trek almost 3 years. The progression of my disease was one tumor removed from the posterior neck...head and neck radiation (IMRT)...one rt.lung surgery for 2 lung mets...then two more tumors removed from the same neck/shoulder area that was treated with radiation...and now have more lung mets on the left and a new mass on an adrenal gland. In reading some of the posts here...I'd just like to say there is also a great sarcoma discussion board with the Sarcoma Alliance...and some very knowledgeable people there. http://www.sarcomaalliance.org/main.shtml (There's a gal on this discussion board, Olga, who seems to be quite knowledgeable!)

Yes, this is a tuff cancer...aggressive...and truly the stats are not so good for several reasons. Not enuff of us for good research stats...and the ability of this disease to be so pestersome. One should absolutely be seen by a specialty sarcoma group to begin with. First line of defense is a terrific surgeon who can remove the primary mass with clean margins (no tumor cells). They've shown in research this really is the key...getting those clean margins in the very beginning. There can be so many mishaps along the way...that you need to become 'the captain of your ship' and really inform yourself. The chemo offered to this disease can reduce tumors...but the literature really doesn't show it's effectiveness: tumors coming back in about 8+ months from chemo.
I'm off to Mayo Mn on Monday to see what's new and available to me...radiofrequency ablation, cryoablation...and something else new called stereotactic radiosurgery. I wish the best to all of you...and, if there is anyone out there who has ever had a sarcoma in the back of their neck (I've not found one yet!), let me know. Sharing info is good stuff.
Beth

Comments

  • wburns
    wburns Member Posts: 1
    #2
    Spindle Cell Sarcoma
    Mine wasn't on the neck...Lower, in the middle of my back near (but not involving, thankfully) the spine. I can echo much of what you write except about recurrence so far. About 13 months ago, I saw my general practitioner about a lump in the middle of my back that had grown from pea-sized to marble-sized in the space of several months. Unfortunately for me, I also had a sebaceous cyst on my upper back which had not grown bigger in about a year. The GP, despite my protesting (not strongly enough) that the former lump felt entirely different from the latter, diagnosed both as sebaceous cysts and sent me off to the surgeon to have both removed. The surgeon removed the sebaceous cyst but, upon examining the other lump, realized it was not also one, so he closed me up, had an MRI done to determine that it was not attached to anything vital, then performed a second surgery to remove it. He said he was "99 percent" certain that it wasn't malignant and sent it off for pathology tests. Guess what?

    Since then, I have had radical surgery and a follow-up skin graft to close a gaping wound in the middle of my back, since the surgical oncologist had to remove much larger margins and more skin due to the earlier surgeries. The most recent surgeries and all my follow-up care have been through the Johns Hopkins Sarcoma Center in Baltimore. I have been VERY pleased with the care I have gotten since those earlier days. In my case, in consultation with the radiation oncologist, we decided to forego radiation for the time being (due to the unusual circumstances and length of time it took for my surgical wound to heal), but so far after 11 months and three MRIs and chest X-rays, they have detected no recurrence or mets.

    I guess I would echo your sentiments in a couple of ways. First, TRUST YOURSELF It's your body, and you know better than your GP when something is wrong. I knew this lump was not the same as the one on my upper back. Had I insisted that they do a needle biopsy at first instead of jumping to surgery, the course of my recovery would have been MUCH shorter with less chance of recurrence or mets. They could have shrunk the margins with radiation before surgery and thus taken much less tissue. Second, find a sarcoma center where they know what they're doing. Because these are rare cancers, most doctors have never encountered them. I felt a great confidence just knowing that my doctors felt confident and knowledgable.

    I wish you and all cancer patients the best of luck and care.
  • aliceniki
    aliceniki Member Posts: 6
    #3
    wburns said:

    Spindle Cell Sarcoma
    Mine wasn't on the neck...Lower, in the middle of my back near (but not involving, thankfully) the spine. I can echo much of what you write except about recurrence so far. About 13 months ago, I saw my general practitioner about a lump in the middle of my back that had grown from pea-sized to marble-sized in the space of several months. Unfortunately for me, I also had a sebaceous cyst on my upper back which had not grown bigger in about a year. The GP, despite my protesting (not strongly enough) that the former lump felt entirely different from the latter, diagnosed both as sebaceous cysts and sent me off to the surgeon to have both removed. The surgeon removed the sebaceous cyst but, upon examining the other lump, realized it was not also one, so he closed me up, had an MRI done to determine that it was not attached to anything vital, then performed a second surgery to remove it. He said he was "99 percent" certain that it wasn't malignant and sent it off for pathology tests. Guess what?

    Since then, I have had radical surgery and a follow-up skin graft to close a gaping wound in the middle of my back, since the surgical oncologist had to remove much larger margins and more skin due to the earlier surgeries. The most recent surgeries and all my follow-up care have been through the Johns Hopkins Sarcoma Center in Baltimore. I have been VERY pleased with the care I have gotten since those earlier days. In my case, in consultation with the radiation oncologist, we decided to forego radiation for the time being (due to the unusual circumstances and length of time it took for my surgical wound to heal), but so far after 11 months and three MRIs and chest X-rays, they have detected no recurrence or mets.

    I guess I would echo your sentiments in a couple of ways. First, TRUST YOURSELF It's your body, and you know better than your GP when something is wrong. I knew this lump was not the same as the one on my upper back. Had I insisted that they do a needle biopsy at first instead of jumping to surgery, the course of my recovery would have been MUCH shorter with less chance of recurrence or mets. They could have shrunk the margins with radiation before surgery and thus taken much less tissue. Second, find a sarcoma center where they know what they're doing. Because these are rare cancers, most doctors have never encountered them. I felt a great confidence just knowing that my doctors felt confident and knowledgable.

    I wish you and all cancer patients the best of luck and care.

    hi
    Hi I have spindrl cells for four years and did no treatment and I am fine cemo kills dont do it please
  • MikeNewMexico
    MikeNewMexico Member Posts: 1
    #4
    Year 2012 ?
    I have liposarcoma left thigh/groin area..
    My tumor was removed by a surgeon in my area. Thinking it was benign. The path report was milignancy. My wife sought out specialist in this form of cancer. We ended up at MD Anderson, where i had neg margins removed, another tumor which was benign. Muscles removed were replaced by muscle in the same leg. I am at the begining of this journey. I returns to return every 3 mos to Houston for MRI and check ups.
    I wondering what treatments you are involved in.
    Look forward to hearing from any of you and hope you are well.

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