Clear Cell Sarcoma

Today I have been diagnosed with clear cell sarcoma in my right knee.  The lump began to grow in May 2008 after arthroscopy to remove a benign cyst.  After going back and forth to a GP and physiotherapist in October 2008, I had another MRI scan and was referred to a local cancer care centre in Newcastle upon Tyne.  Another MRI, CT and bone scan later, the diagnosis was confirmed today.  The Doctor is recommending amputation above the knee, but the artificial limbs available on the NHS are at best glorified lego kits. 

I'm going to get a second opinion, but is amputation the best soultion or can knee replaecment be an option

Hope to hear from anyone who has been through amputation in NHS system

Regards

I am sorry to hear of your diagnosis Sax. The shock, fear, and unknown are extremely overwhelming after the news. And I know exactly what you are feeling right now.

I was diagnosed with clear cell in the right ankle in October. I was shell shocked after the diagnosis, and it took a couple of weeks to sort it all out in my mind. I am a military veteran and fortunately was able to utilize one of the best VA hospitals in the country. I had a University Ortho Surgeon assigned to me who was absolutely wonderful. After we discussed the option of limb salvage and all the following reconstructive surgeries as well as the increased possibility of metastisis, I asked him a simple question. "If it was YOU sitting in this chair what would you do?" He didnt miss a beat and replied "I'd have the amputation". I accepted it completely and I had a below the knee amputation on Nov 13th. Was in the hospital for 4 days and off my pain meds in 3 weeks. Was it easy? No. Did it completely change my lifestyle? Absolutely. Did it save my life? Probably. I will say it was not as painful or traumatic I as I had envisioned in my fearful mind. I was on crutches 2 days after the surgery.

I am 7 weeks post op and am already walking on my prosthetic. You will learn that the changes in your lifestyle will be quickly overcome, and you will be surrounded by people to make your transition as easy as possible. I feel it was a small price to pay, at 46, to ensure I have more time to enjoy life and my beautiful wife.

Second opinions are always good. I personally did not feel the need to seek one out. As for knee replacement in lieu of amputation I would mention this. Alot depends on obtaining clear margins in order to ensure you are cancer free at the site. It was explained to me that "local reoccurence" is extremely likely after excision versus amputation. You would also run the increased risk of at least regional metastisis, which often times in distal extremities means the lymphnodes in the groin area. Not good.

Im not sure what the "NHS" system is, but I know I obtained a top of the line prosthetic from the VA, through a vendor that works with the Irag and Afghan amputees. I will be golfing and water skiing by this next summer. So I can tell you that there are prosthetics out there that allow you to live an active and productive lifestyle.

The MOST important thing to a fast and complete recovery is to stay POSITIVE. Don't let it beat you emotionally or in your head. If you can do that, the physical stuff can be overcome with determination, the support of your friends and family, and hard work. Don't be afraid.......you CAN do this.

My prayers and with you, and God Bless

Hi

 Thanks for the message.  It has given me hope that ther is life after amputation.  I have just returned from visiting a sarcoma support group meeting in Newastel.  The people there were very supportive, I even spoke to 2 amputees, and they were extremely positive.  They just said keep strong mentally and I would be able to get through this. 

 I am not scared of amputation now.  I will just have to see what happens now.  Its in the hands of the Gods, but there is light at the end of the tunnel, the hard part is getting through the tunnel.

Thanks again for the message of support and prayers. 

On 1/5/2009 The Sax Machine wrote:

Hi

 Thanks for the message.  It has given me hope that ther is life after amputation.  I have just returned from visiting a sarcoma support group meeting in Newastel.  The people there were very supportive, I even spoke to 2 amputees, and they were extremely positive.  They just said keep strong mentally and I would be able to get through this. 

 I am not scared of amputation now.  I will just have to see what happens now.  Its in the hands of the Gods, but there is light at the end of the tunnel, the hard part is getting through the tunnel.

 

Thanks again for the message of support and prayers. 

 

Sax, I'm sorry to hear of your recent dianose. In Aug. 2205 I was also diagnosed with clear cell sarcoma. The tumor was located in my sacrum area. I was treated at the University of Virginia, who gave me options of different treatments. One of the first options was amputation, but at the age of 21 I did not like the sound of that. First reason cause I would ultimately end up in a wheal chair with cathiters and a colostimy bag for the rest of my life. (the doctors eaven agreed when I said that sounded like manslaughter) This was because of the location of the tumor and that it had attached to my bladder and the amputation would includ my whole leg up to my hip bone which ment no possibilties for prosthetics. 2nd option for me was chemotherapy and radiation.Ofcourse when this option was given to me the biopsy was still between 2 different sarcomas. Nerve sheath sarcom=typically responds well to chemo and of course clear cell sarcoma =typically does not respond well to chemo (typically being a key word).  I decided to go with the second option. I would rather try instead of wondering for the rest of  my life. I went into the hospital not knowing which cancer I had and started chemo waiting for more studies to come back to determine if it was the clear or the nerve sheath, while hoping it would be the nerve sheath and that the chemo would work.  Happily chemo worked but the study came back Clear cell sarcoma.  I was shocked but happy. I went thru 6 months of chemo and 30days of radiation at UVA.  3yrs later going on 4 I'm still in remission with check up every 3-4 months.  But still it scares me after having chemo and radiation was the correct answer. Most research and case studies I've done with long term survival rate all have had amputations.  If my tumor had been in a different location and it was possible for a prosthetic and not all the yucky side effects  I might of went with amputation. I do consider myself VERY lucky, because I never hear of anyone just doing chemo and raidation with clear cell sarcoma cause it typically does not work. I dont know if u have made a descion or if u have already went thru but UVA was great. I hope this helps u with accepting amputation, because like I stated if it had not been such an extreem amputation without the cathiters and colostimy bag. If I could of just had the option for a prosthetic I would of more than likey went with amputation.  GOOD LUCK!!!  STAY POSITVE!! MIND OVER MATTER.  Honestly, after going thru all of this loosing my hair, having to stay in the hospital for five to 6 days every 3wks for chemo treatment for 6mnths, getting my blood checked every 2-3 days, blood transfusion, the endless medications, and the worse mouth sores near the end of my treatment.  The best medication for me was staying positve and happy.

On 1/13/2009 ashsarcoma21 wrote:

 

On 1/5/2009 The Sax Machine wrote:

Hi

 Thanks for the message.  It has given me hope that ther is life after amputation.  I have just returned from visiting a sarcoma support group meeting in Newastel.  The people there were very supportive, I even spoke to 2 amputees, and they were extremely positive.  They just said keep strong mentally and I would be able to get through this. 

 I am not scared of amputation now.  I will just have to see what happens now.  Its in the hands of the Gods, but there is light at the end of the tunnel, the hard part is getting through the tunnel.

 

Thanks again for the message of support and prayers. 

 

Sax, I'm sorry to hear of your recent dianose. In Aug. 2205 I was also diagnosed with clear cell sarcoma. The tumor was located in my sacrum area. I was treated at the University of Virginia, who gave me options of different treatments. One of the first options was amputation, but at the age of 21 I did not like the sound of that. First reason cause I would ultimately end up in a wheal chair with cathiters and a colostimy bag for the rest of my life. (the doctors eaven agreed when I said that sounded like manslaughter) This was because of the location of the tumor and that it had attached to my bladder and the amputation would includ my whole leg up to my hip bone which ment no possibilties for prosthetics. 2nd option for me was chemotherapy and radiation.Ofcourse when this option was given to me the biopsy was still between 2 different sarcomas. Nerve sheath sarcom=typically responds well to chemo and of course clear cell sarcoma =typically does not respond well to chemo (typically being a key word).  I decided to go with the second option. I would rather try instead of wondering for the rest of  my life. I went into the hospital not knowing which cancer I had and started chemo waiting for more studies to come back to determine if it was the clear or the nerve sheath, while hoping it would be the nerve sheath and that the chemo would work.  Happily chemo worked but the study came back Clear cell sarcoma.  I was shocked but happy. I went thru 6 months of chemo and 30days of radiation at UVA.  3yrs later going on 4 I'm still in remission with check up every 3-4 months.  But still it scares me after having chemo and radiation was the correct answer. Most research and case studies I've done with long term survival rate all have had amputations.  If my tumor had been in a different location and it was possible for a prosthetic and not all the yucky side effects  I might of went with amputation. I do consider myself VERY lucky, because I never hear of anyone just doing chemo and raidation with clear cell sarcoma cause it typically does not work. I dont know if u have made a descion or if u have already went thru but UVA was great. I hope this helps u with accepting amputation, because like I stated if it had not been such an extreem amputation without the cathiters and colostimy bag. If I could of just had the option for a prosthetic I would of more than likey went with amputation.  GOOD LUCK!!!  STAY POSITVE!! MIND OVER MATTER.  Honestly, after going thru all of this loosing my hair, having to stay in the hospital for five to 6 days every 3wks for chemo treatment for 6mnths, getting my blood checked every 2-3 days, blood transfusion, the endless medications, and the worse mouth sores near the end of my treatment.  The best medication for me was staying positve and happy.

Thanks for your message

I have been positive, and people have been surprised at this.  I think it is more beneficial to keep positive rather than wallow in a den of self pity.  I get results of a PET scan later today, and go for a second opinion next week at the Royal Marsden Hospital in London.  Whatever the future holds, I am sure that something goos will come from this

Thanks once again

Sax Machine

hi sax

hope things are ok?

we live in merseyside. my son was 10 when he was diagnosed with cler cell sarcoma that was 2 years ago. his was in his neck so amputation was not an option!! he had radiotherapy and so far so good.

he has scans every 4 months now but is doing really well.

gill and nathaniel