Spindle Cell Tumor

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Comments

  • Crofty
    Crofty Member Posts: 1
    #22
    Wendyuk said:

    Hi
    I was diagnosed with spindle cell carcinoma of the bladder in february 2001. I had a radical cystectomy and hysterectomy. I was told this cancer was very rare and especially at my age of 29 at the time. I would just like to send you all hope as im a survivor of ten years. God bless you all an stay positive sending many hugs and much love xxx

    Hi I just saw your post
    Hi I just saw your post wendyuk, I am just recovering after surgery to remove a spindle cell tumor from my bladder. I'm 26, and a little confused by it all and have been told it is extremely rare. Doctors here in Australia had first thought it to be paraganglioma, but after part of the tumor being sent to Boston in the U.S, this is now what they think to be spindle cell. Can you tell me anything about what you have had to go through? Just an idea would be nice :) thanks
  • mcjimenez
    mcjimenez Member Posts: 3
    #23
    Crofty said:

    Hi I just saw your post
    Hi I just saw your post wendyuk, I am just recovering after surgery to remove a spindle cell tumor from my bladder. I'm 26, and a little confused by it all and have been told it is extremely rare. Doctors here in Australia had first thought it to be paraganglioma, but after part of the tumor being sent to Boston in the U.S, this is now what they think to be spindle cell. Can you tell me anything about what you have had to go through? Just an idea would be nice :) thanks

    Spindle Cell Sarcoma-Bladder
    Were they able to remove the tumor without removing the bladder? Or did you have to have a cystectomy?
  • mcjimenez
    mcjimenez Member Posts: 3
    #24
    Crofty said:

    Hi I just saw your post
    Hi I just saw your post wendyuk, I am just recovering after surgery to remove a spindle cell tumor from my bladder. I'm 26, and a little confused by it all and have been told it is extremely rare. Doctors here in Australia had first thought it to be paraganglioma, but after part of the tumor being sent to Boston in the U.S, this is now what they think to be spindle cell. Can you tell me anything about what you have had to go through? Just an idea would be nice :) thanks

    Spindle Cell Sarcoma-Bladder
    Were they able to remove the tumor without removing the bladder? Or did you have to have a cystectomy?
  • Kate-A
    Kate-A Member Posts: 2
    #25
    dfrank said:

    Spindel Cell Sarcoma
    4 years ago my wife Mary had a lumpectomy and it was diagnosed as Spindle Cell Sarcoma. She just had a full mastectomy as she had a re-occurrence in the same breast with a tumor that grew to 3 cm in less then 6 months. Now just 10 weeks later they have found a blockage in her left Bronchial Tube and two spots on the left lung that are also Spindle Cell Sarcoma. We are looking for Doctor's with experience in this area, Studies, Trials, etc to help us with this battle. She is now at the Cleveland Clinic undergoing a Stendt through the tumor to open up her airway and give her lung capacity until we find a solution. Please forward this to anyone that might be able to help or give us some input on were or who to contact.

    Your wife's lung

    sir, did the hospital doctor recommend after surgery, an X-Ray (chest) every 3 months
    and then every 6 months, and then one once a year ? Why you may ask? Well Spindle cell
    Sarcoma is well know to migrate to the lung if not carefully watched after surgery.
    Most Sarcoma clinics are labeled :" Sarcoma/lung clinic ." I do not know what the percentage was of it returning in your wife's case? But most of the time the doctor will tell you 80% or 97% cure rate and that perhaps 20 % return and that is why the 3, 6 aand one year X-Ray follow-up is done. I hope this helps you ?
  • Kate-A
    Kate-A Member Posts: 2
    #26
    Sherry64 said:

    Spindle cell in leg
    YES! I was diagnosed with spindle cell a year ago. I had a limb salvage surgery to remove the softball sized tumor just above my left knee. The tumor erroded a hole in my femur and was stage three when diagnosed. I had accellerated radiation followed by sugery in November of 2007. Surgery was a success! I had a total knee replacemet, 1/2 of my femor removed and replaced with prosthesis. The tumor had come through my skin and therefore had a skin graft. It also wrapped itself around my femoral artery which was by-passed with one from a cadaber. No chemo or radiation after. Trying to build and strengthen my body now. I still have my leg and am walking without assistance. Thanks to God, and the doctors at Cleveland Clinic.
    Keep fighting!

    Your leg

    Sherry it sounds like you have had a very long road getting better. But I must tell you that in the medical community there is much debate on whether or not after surgery , patients should be complimented
    with Chemo and Radiation . I believe God is the great healer ! But with returning sarcoma someone should be seeing you and monitoring you carefully ! They really shuld consider radiation again if it returns.
  • FayCoTodd
    FayCoTodd Member Posts: 11
    #27
    mcjimenez said:

    Spindle Cell Sarcoma-Bladder
    Were they able to remove the tumor without removing the bladder? Or did you have to have a cystectomy?

    Spindle Cell Sarcoma of the Lung
    I recently had a tumor removed from my lung that was 1 cm, was diagnosed as Spindle Cell Sarcoma, since PET Scan showed no other uptake except for the known tumor they are telling me that it was more than likely the Primary location and that in all intents and purposes I may be cured, but they will monitor with 4 month CT Scans for 2 years, should I be worried? My care is under the direction of the Veterans Administration, all of this is being told to me by the Thoracic Surgeon who removed the tumor, I have yet to see an oncologist, or anyone who specializes with cancer.
  • aliceniki
    aliceniki Member Posts: 6
    #28
    Crofty said:

    Hi I just saw your post
    Hi I just saw your post wendyuk, I am just recovering after surgery to remove a spindle cell tumor from my bladder. I'm 26, and a little confused by it all and have been told it is extremely rare. Doctors here in Australia had first thought it to be paraganglioma, but after part of the tumor being sent to Boston in the U.S, this is now what they think to be spindle cell. Can you tell me anything about what you have had to go through? Just an idea would be nice :) thanks

    hi
    I have spindel in my thyroid from2008 till now I had no treatment or surgery and I.doing fine .but if spindel cell is so rare how cam so many people have IT? PLEASE STAY AWAY FROM CEMO
  • spindlecell
    spindlecell Member Posts: 1
    #29
    aliceniki said:

    hi
    I have spindel in my thyroid from2008 till now I had no treatment or surgery and I.doing fine .but if spindel cell is so rare how cam so many people have IT? PLEASE STAY AWAY FROM CEMO

    spindlecell
    Yes very rare. 4ish years ago pea size on forehead.

    All I could find was a story on a dog. An article 15 (males) in Japan died. I am female. Only info was 1 out of 5 get the cancer back; didn't say same place or different place in/on body. Mine was tender sore size of pea on forehead occasionally an intense sharp pain
    led me to believe it was not a cyst as I put off. Doctor worried, sent me immediately
    to dermatologist who immediately sent me to surgeon for biopsy. Three pathologists and immediate surgery. Ended up cutting uneven lightening type scar 4" long and ends about 1 and half pulled back and scraped area out.

    Interesting the posts as could find no stories before. Normal head face.
    Recent article before this site, was a man in Japan in tooth molar area. Pictures, a case someone went very long before seeking help. Notice this on other rare cancer pictures.

    And that article worried me as I'm having problems in that area, right side, but deep inside ear, jaw, nothing seen by ears checked teeth checked. Blood count no sign of infection. My eyes are really getting bad, and that worries me because of forehead which healed great scar not real noticeable.

    Back then I looked everywhere internet and doctors told me I wouldn't find anything because it was so rare. And I figured, being so rare is why they don't care to learn about it.

    QUESTION. My insurance isn't good. I wonder which CT scan MRI or Petscan best to get a doctor to do. I'm tired and can't remember the differences right now, and seeing one doctor tomorrow. Don't want to get milked.

    Prior military medic, PTSD and military studies say good chance of cancer and lot's of illnesses. Darn right stress can kill you. PTSD lot's of problems and pain entire body so many symptoms I'm always waiting to long to get treatment. Spent to much time wasting money.

    I will end this with I do not suggest radiation or chemo for this, for many many reasons from experience in medical field.

    Your stories are so interesting and only ones I've heard.
  • mimijohnson
    mimijohnson Member Posts: 2
    #30
    spindlecell said:

    spindlecell
    Yes very rare. 4ish years ago pea size on forehead.

    All I could find was a story on a dog. An article 15 (males) in Japan died. I am female. Only info was 1 out of 5 get the cancer back; didn't say same place or different place in/on body. Mine was tender sore size of pea on forehead occasionally an intense sharp pain
    led me to believe it was not a cyst as I put off. Doctor worried, sent me immediately
    to dermatologist who immediately sent me to surgeon for biopsy. Three pathologists and immediate surgery. Ended up cutting uneven lightening type scar 4" long and ends about 1 and half pulled back and scraped area out.

    Interesting the posts as could find no stories before. Normal head face.
    Recent article before this site, was a man in Japan in tooth molar area. Pictures, a case someone went very long before seeking help. Notice this on other rare cancer pictures.

    And that article worried me as I'm having problems in that area, right side, but deep inside ear, jaw, nothing seen by ears checked teeth checked. Blood count no sign of infection. My eyes are really getting bad, and that worries me because of forehead which healed great scar not real noticeable.

    Back then I looked everywhere internet and doctors told me I wouldn't find anything because it was so rare. And I figured, being so rare is why they don't care to learn about it.

    QUESTION. My insurance isn't good. I wonder which CT scan MRI or Petscan best to get a doctor to do. I'm tired and can't remember the differences right now, and seeing one doctor tomorrow. Don't want to get milked.

    Prior military medic, PTSD and military studies say good chance of cancer and lot's of illnesses. Darn right stress can kill you. PTSD lot's of problems and pain entire body so many symptoms I'm always waiting to long to get treatment. Spent to much time wasting money.

    I will end this with I do not suggest radiation or chemo for this, for many many reasons from experience in medical field.

    Your stories are so interesting and only ones I've heard.

    Just Diagnosed
    I was just diagnosed on 12/5/12 with spindle cell carcinoma. I was at MD Anderson for my annual checkup. I have had a lump on my neck for quite some time. When I was having an ultrasound of my breasts, I pointed out the spot on my neck. The technician called in a radiologist, who called in another radiologist. They did a needle biopsy of the lump, and by the time I left the hospital, I had a preliminary diagnosis of spindle cell carcinoma.

    I was completely floored by the diagnosis. I am anxiously awaiting return of the complete pathology report, so the doctors can determine my treatment. There is so little information on the internet!

    I will post again when I know more. It is comforting to find a group of people who have shared the same diagnosis.
  • Krystal_and_Larry
    Krystal_and_Larry Member Posts: 1
    #31
    Spindle Cell Sarcoma Confusion......

    Well, I am totally confused and need help here.... My girlfriend just lost a big part of her right lung on 12/21/12 to a Spindle Cell Sarcoma. Biopsy showed it to be benign but why such a radical surgery for a benign tumor?? Also, we were told it's very rare, especially for someone of her age, 27. She has had alot of medical problems over the last few years such as losing her gall bladder, appendix, cysts on thye overies etc. What could be the possibility this is all related? Just seems very odd that someone who has been healthy all her life can in a very short period of time have so many problems crop up. Any words of wisdom, advice etc would be appreciated.

  • robinsummers
    robinsummers Member Posts: 1
    #32
    Krystal_and_Larry said:

    Spindle Cell Sarcoma Confusion......

    Well, I am totally confused and need help here.... My girlfriend just lost a big part of her right lung on 12/21/12 to a Spindle Cell Sarcoma. Biopsy showed it to be benign but why such a radical surgery for a benign tumor?? Also, we were told it's very rare, especially for someone of her age, 27. She has had alot of medical problems over the last few years such as losing her gall bladder, appendix, cysts on thye overies etc. What could be the possibility this is all related? Just seems very odd that someone who has been healthy all her life can in a very short period of time have so many problems crop up. Any words of wisdom, advice etc would be appreciated.

    Spindle Cell Neoplasm

    My brother has Spindle Cell Neoplasm Lung Cancer.  Is there any one out there that specializes in this type of cancer?  Any help would be appreciated.  I don't want to lose him.

    Robin

  • seajoy88
    seajoy88 Member Posts: 1
    #33
    robinsummers said:

    Spindle Cell Neoplasm

    My brother has Spindle Cell Neoplasm Lung Cancer.  Is there any one out there that specializes in this type of cancer?  Any help would be appreciated.  I don't want to lose him.

    Robin

    Spindle Cell Lung Cancer

    Hi Robin,

     

    My brother was diagnosed with spindle cell lung cancer (Stage IIB) yesterday. The doctors still need to determine whether it is sarcoma or carcinoma. I can't find much information about this type of cancer so I would be interested in anything you or anyone else on here knows about it. I hope that your brother and mine can beat this cancer.

     

    Take care, Joy

  • jrmhgreene
    jrmhgreene Member Posts: 1
    #34
    Spindle Cell Tumor

    I just my pathology report and just found out that i havr the same thing... I trying to figure out whats next...

  • kstevenson127
    kstevenson127 Member Posts: 1
    #35
    Spindle Cell Neoplasm

    Hello All,

    I am 25 years old, battled malignant melanoma two years ago and today I received a phone call this morning from my doctor stating that what for years was thought of as a "cyst" on my back tested as Spindle Cell Neoplasm.  It's about the size of a pea and they are going to have me go in next week for tissue removal to be tested.  Why isn't there more information about this type of skin cancer online?  

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