Spindle cell or Epithelioid sarcoma?

Sandeep Patel
Sandeep Patel Member Posts: 3
edited March 2014 in Sarcoma #1
I found out two months ago that I had a tumour in the third toe of my left foot, and that there is some damage to the other toes (except the big toe). I have had surgery on the foot where the middle toe and the third metatarsal bone has been removed and I am currently recovering from the operation. Once the wound is healed I believe I will be starting a course of radiotherapy.

Unfortunately various specialists in this field have not been able to agree on a diagnosis as it seems I have a rare form of cancer. Some are saying that it is a spindle cell type of cancer, others are saying it is an epithelioid sarcoma. Without a confirmed diagnosis, it seems any post op treatment will be experimental, and I am told that I will require close monitoring to ensure the cancer does not re-emerge. At the moment I am unsure if radiotherapy or chemotherapy will even work, but I guess I have to trust those who know best and make decisions based on the best information available to me.

In one sense I am feeling lucky that I haven't lost my whole leg because that was a consideration for a while, particularly as we weren't sure how aggressive the tumour was, but I have to still face up to the reality that I may have to consider full amputation if the cancer does turn out to be of the aggressive nature. Everything so far points to the fact that it isn't, but it is worrying when some specialists are saying that it is. I guess as anyone who has had cancer will know, I have to take one day at a time, and importantly remain head strong and believe that I will recover and lead as normal a life as possible.

Comments

  • Sandeep Patel
    Sandeep Patel Member Posts: 3
    #2
    Confirmation of angiosarcoma
    I met with specialists from the sarcoma unit here in London, who has diagnosed me with angiosarcoma, and is recommending the aggressive treatment of below the knee. This will be followed up with 18 weeks of aggressive chemotherapy. Obviously this is shocking news I have received today but as I put in my previous post it was a possibility, and unfortunately it seems it is the only option I have.

    I will be undergoing some further tests - MRI, CT etc - within the next two weeks to get an up to date picture of what's going on, and I anticipate going for surgery prior to Christmas.

    I'm going to try and remain positive as this is something that is out of my control and I believe I will lead as normal a life as possible. I have to prepare for some difficult months ahead but I have great family support and I will come out of this dark episode in my life.

    Thanks for reading.
  • Findingout
    Findingout Member Posts: 132
    #3
    Sandeep Patel said:

    Confirmation of angiosarcoma
    I met with specialists from the sarcoma unit here in London, who has diagnosed me with angiosarcoma, and is recommending the aggressive treatment of below the knee. This will be followed up with 18 weeks of aggressive chemotherapy. Obviously this is shocking news I have received today but as I put in my previous post it was a possibility, and unfortunately it seems it is the only option I have.

    I will be undergoing some further tests - MRI, CT etc - within the next two weeks to get an up to date picture of what's going on, and I anticipate going for surgery prior to Christmas.

    I'm going to try and remain positive as this is something that is out of my control and I believe I will lead as normal a life as possible. I have to prepare for some difficult months ahead but I have great family support and I will come out of this dark episode in my life.

    Thanks for reading.

    Spindle cell
    I was searching "spindle cell" on this website as I have been diagnosed with a spindle cell carcinoma of the breast, and saw your posts. Do you have a date yet for your surgery? Were they able to differentiate your type of cancer, from spindle cell and/or epithelioid sarcoma? There certainly does not seem to be a lot of information on spindle cell types of cancer. I don't see a surgeon/ oncologist until next week, so I have no specifics yet on my situation. I hope you are recovering well and that your chemo treatment - if that has begun - is not too uncomfortable for you, and that you'll be able to enjoy the holidays.
  • Sandeep Patel
    Sandeep Patel Member Posts: 3
    #4
    Findingout said:

    Spindle cell
    I was searching "spindle cell" on this website as I have been diagnosed with a spindle cell carcinoma of the breast, and saw your posts. Do you have a date yet for your surgery? Were they able to differentiate your type of cancer, from spindle cell and/or epithelioid sarcoma? There certainly does not seem to be a lot of information on spindle cell types of cancer. I don't see a surgeon/ oncologist until next week, so I have no specifics yet on my situation. I hope you are recovering well and that your chemo treatment - if that has begun - is not too uncomfortable for you, and that you'll be able to enjoy the holidays.

    Spindle Cell
    Sorry for the tardy reply, I haven't been on here since my last post. I had the surgery on 13 December and am doing well with my recovery. I am walking with a prosthetic although it will be a few more months yet until I am fully healed, but I am confident I will do most things like a normal bodied person. I have always kept a very strong mind about all this and it has certainly helped.

    Following the surgery I met with my oncologist and she gave us the news that the tumour I had was called angiosarcoma, which had originated in the soft tissue. Due to this fate of luck I did not need to undergo any chemo or radiotherapy. So obviously that was a huge relief and I was able to begin my recovery quicker.

    Unfortunately not much is known about this type of cancer, but it seems it was from the family of epithelioid sarcomas. So I feel very lucky to be alive as everything I had read about this was not good.

    I hope everything is well with you and I look forward to hearing how you are doing with your recovery.

    Sandeep
  • ccp
    ccp Member Posts: 2
    edited September 2018 #5
    Sandeep Patel said:

    Spindle Cell
    Sorry for the tardy reply, I haven't been on here since my last post. I had the surgery on 13 December and am doing well with my recovery. I am walking with a prosthetic although it will be a few more months yet until I am fully healed, but I am confident I will do most things like a normal bodied person. I have always kept a very strong mind about all this and it has certainly helped.

    Following the surgery I met with my oncologist and she gave us the news that the tumour I had was called angiosarcoma, which had originated in the soft tissue. Due to this fate of luck I did not need to undergo any chemo or radiotherapy. So obviously that was a huge relief and I was able to begin my recovery quicker.

    Unfortunately not much is known about this type of cancer, but it seems it was from the family of epithelioid sarcomas. So I feel very lucky to be alive as everything I had read about this was not good.

    I hope everything is well with you and I look forward to hearing how you are doing with your recovery.

    Sandeep

    Epithileoid Sarcoma

    Hi Sandeep,

     

    My name is Chandler. My brother (28 yrs old) was just diagnoised with Epithileoid Angiosarcoma. I haven't been able to find a lot about this rare cancer, so after seeing your post I wanted to reach out to you. I hope you are doing well today and living a perfect normal healthy life. Just wanted to see if you could give me any more info on what to expect in these next few months for him and what all you went through. For him the cancerous cells have attached to his lungs. We are going to MD Anderson next week so they can hopefully find where the tumor is and the best treatment for him. I want to do anything I can for him, so please reach back out to me when you have a chance. Thank you so much!

Discussion Boards