› Forums › Cutaneous Melanoma Community › baseball size lump under my arm removed, doc told me Melanoma
- This topic has 46 replies, 10 voices, and was last updated 13 years, 10 months ago by
kmrosserjr.
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- June 21, 2011 at 9:10 pm
So im new. my names Steve, im in good health far as i can tell. I noticed a lump about 6 months ago. I had no kind of insurance and little help getting to get it checked out. When i did about 3 months later they just felt it and said it didnt seem like cancer and we can cut it out if you want. so i spent the next 3 months trying to get Insurance. The lump grew to the size of a baseball before it was removed a week and a half ago. I went in for my post op today and the they told me they found Melanoma. I have no visible signs of problem that i can see on my skin.
So im new. my names Steve, im in good health far as i can tell. I noticed a lump about 6 months ago. I had no kind of insurance and little help getting to get it checked out. When i did about 3 months later they just felt it and said it didnt seem like cancer and we can cut it out if you want. so i spent the next 3 months trying to get Insurance. The lump grew to the size of a baseball before it was removed a week and a half ago. I went in for my post op today and the they told me they found Melanoma. I have no visible signs of problem that i can see on my skin. Im freaked out of course, dont want to tell my family yet, and everytime i look at my kids i have the hardest time not breaking down, not sure what im asking or what im here for. just scared and figure other people here might know what its like and where things go from here. waiting for a call for my appointment to get a PET/CT whole body scan whatever that is. should be in the next few days or so.
Steve
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- June 21, 2011 at 9:19 pm
Steve,
I'm so sorry you've had to join us. Evidently you have what is known as an unknown primary. Think back, have you ever had a mole that was removed? Had a mole that was there one day and then disappeared? There are others on the board with an unknown primary, it doesn't change your future.
I'm thinking your Dr is not a melanoma specialist since you didn't have any clues as to what you are facing. You need to look into this. There are many new treatments and trials out there but a specialist will help you navigate the system. You should have the tumor they removed tested for the new targeted treatments that are out there.
Hopefully the PET/CT will turn nothing else up.
This is a scary time, hopefully we can answer questions for you. Just realize that there is hope. Notice that there is a chat section on this board. If you go in there and sit for awhile someone usually will notice and come in to talk.
Linda
Stage IV since 06 Currently 2 weeks NED (no evidence of disease)
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- June 21, 2011 at 9:19 pm
Steve,
I'm so sorry you've had to join us. Evidently you have what is known as an unknown primary. Think back, have you ever had a mole that was removed? Had a mole that was there one day and then disappeared? There are others on the board with an unknown primary, it doesn't change your future.
I'm thinking your Dr is not a melanoma specialist since you didn't have any clues as to what you are facing. You need to look into this. There are many new treatments and trials out there but a specialist will help you navigate the system. You should have the tumor they removed tested for the new targeted treatments that are out there.
Hopefully the PET/CT will turn nothing else up.
This is a scary time, hopefully we can answer questions for you. Just realize that there is hope. Notice that there is a chat section on this board. If you go in there and sit for awhile someone usually will notice and come in to talk.
Linda
Stage IV since 06 Currently 2 weeks NED (no evidence of disease)
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- June 21, 2011 at 9:35 pm
Steve. It’s totally understandable that you are scared, so just let yourself feel angry, frightened, sad, worried, and cry if that helps you cope at this point. Then, get yourself educated, get to a melanoma center with a good doctor, and come up with a plan. You will need the results of your CAT/PET scan for planning purposes, so get those done ASAP. Those scan results will better inform the doctor where the melanoma is, is there a primary lesion, did the melanoma spread to other areas, etc. Also, you have to have a melanoma specialist review the pathology report on your tumor, to see if further treatment is needed. There are now more and more options for melanoma treatment, and there is plenty of hope for the future. Keep us posted, there are many helpful, supportive, and knowledgeable people who frequent this Board and are in your shoes! Keep the Faith, we are all here for each other in this fight against melanoma. Valerie (Phil’s wife) -
- June 21, 2011 at 9:35 pm
Steve. It’s totally understandable that you are scared, so just let yourself feel angry, frightened, sad, worried, and cry if that helps you cope at this point. Then, get yourself educated, get to a melanoma center with a good doctor, and come up with a plan. You will need the results of your CAT/PET scan for planning purposes, so get those done ASAP. Those scan results will better inform the doctor where the melanoma is, is there a primary lesion, did the melanoma spread to other areas, etc. Also, you have to have a melanoma specialist review the pathology report on your tumor, to see if further treatment is needed. There are now more and more options for melanoma treatment, and there is plenty of hope for the future. Keep us posted, there are many helpful, supportive, and knowledgeable people who frequent this Board and are in your shoes! Keep the Faith, we are all here for each other in this fight against melanoma. Valerie (Phil’s wife) -
- June 21, 2011 at 9:36 pm
Steve,
I'm sorry this is happening and of course you're scared. Just try to keep a grip on it and don't let it lead to full-blown panic because you really do need to keep your wits about you.
I would echo what Linda says about getting a melanoma specialist if at all possible and move as quickly as possible.
I'm guessing you'll probably be doing research online to find as many answers as you can or get an idea of questions for your doctor. Be armed but get your ammo from reputable sources. Scour this site, AIM which is aimatmelanoma.org, National cancer Institute which is cancer.gov will be good places to start. Also, search for Janner on this board, she has a site that's full of good info and it's in her info.
May I give one piece of advice based on what you write? You have children, is your wife in the home? Girlfriend? You need to tell someone close to you because, one, they need to know, particularly if you have a wife…this is part of being married, you know, that sickness and health, better & worse stuff…this is it. Tell her. Plus, it will make you feel better to unload and know you aren't in this alone. AND, she'll need to go with you to all future appointments. You need that extra set of ears and questions.
Lord, in Your mercy, help Your son Steve here with all this. Thank You. Amen.
Grace and peace,
Carol
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- June 21, 2011 at 9:36 pm
Steve,
I'm sorry this is happening and of course you're scared. Just try to keep a grip on it and don't let it lead to full-blown panic because you really do need to keep your wits about you.
I would echo what Linda says about getting a melanoma specialist if at all possible and move as quickly as possible.
I'm guessing you'll probably be doing research online to find as many answers as you can or get an idea of questions for your doctor. Be armed but get your ammo from reputable sources. Scour this site, AIM which is aimatmelanoma.org, National cancer Institute which is cancer.gov will be good places to start. Also, search for Janner on this board, she has a site that's full of good info and it's in her info.
May I give one piece of advice based on what you write? You have children, is your wife in the home? Girlfriend? You need to tell someone close to you because, one, they need to know, particularly if you have a wife…this is part of being married, you know, that sickness and health, better & worse stuff…this is it. Tell her. Plus, it will make you feel better to unload and know you aren't in this alone. AND, she'll need to go with you to all future appointments. You need that extra set of ears and questions.
Lord, in Your mercy, help Your son Steve here with all this. Thank You. Amen.
Grace and peace,
Carol
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- June 21, 2011 at 9:50 pm
Hello Steve,
I also have no insurance. Like many, many Americans our employment doesn't provide insurance and we struggle to pay the rent, let alone $400+ monthly for insurance.
However, most (and I believe ALL) states have some kind of indigent health care. Yes, it's welfare. Call your county office that deals with food stamps and they can let you know where to get applications for health care. In Colorado, you must meet income standards and then what you pay for medical care is based on a sliding scale.
For instance, for a $7000 PET scan, I got charged $200. Doesn't make a whole lot of difference since I can't pay the $200 either. I have bills and monthly payments.
Of course there is Medicaid. I finally got on Medicaid and it is wonderful. I pay $2 for doctor visits and $3 for PET scans. That I can afford.
Medicaid is available for you based on your income and is much, much easier to get if you have minor children living in your home. Please contact your local hospital or Social Services to see if you are eligible for Medicaid. Or you can apply for Social Security Disabiltiy or SSI and may get Medicaid then.
Without any insurance or Medicaid, my doctors and hospitals will still treat me. However, they will hound me for payments and have sent me to collections.
Your local hospital most likely has a social worker whose job it is to help with finances. Make use of them.
Bottom line, you can find some help. You may go deeply into debt due to medical bills. Millions of Americans are in debt for medical reasons and go bankrupt.
Do not let your finances effect your medical decisions. You deserve good medical care no matter what your income.
Nicki, Stage 3b
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- June 21, 2011 at 9:50 pm
Hello Steve,
I also have no insurance. Like many, many Americans our employment doesn't provide insurance and we struggle to pay the rent, let alone $400+ monthly for insurance.
However, most (and I believe ALL) states have some kind of indigent health care. Yes, it's welfare. Call your county office that deals with food stamps and they can let you know where to get applications for health care. In Colorado, you must meet income standards and then what you pay for medical care is based on a sliding scale.
For instance, for a $7000 PET scan, I got charged $200. Doesn't make a whole lot of difference since I can't pay the $200 either. I have bills and monthly payments.
Of course there is Medicaid. I finally got on Medicaid and it is wonderful. I pay $2 for doctor visits and $3 for PET scans. That I can afford.
Medicaid is available for you based on your income and is much, much easier to get if you have minor children living in your home. Please contact your local hospital or Social Services to see if you are eligible for Medicaid. Or you can apply for Social Security Disabiltiy or SSI and may get Medicaid then.
Without any insurance or Medicaid, my doctors and hospitals will still treat me. However, they will hound me for payments and have sent me to collections.
Your local hospital most likely has a social worker whose job it is to help with finances. Make use of them.
Bottom line, you can find some help. You may go deeply into debt due to medical bills. Millions of Americans are in debt for medical reasons and go bankrupt.
Do not let your finances effect your medical decisions. You deserve good medical care no matter what your income.
Nicki, Stage 3b
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- June 22, 2011 at 12:03 am
Steve,
My husband and I can relate to your situation. He, like you, was a healthy guy. He'd had a in-situ melanoma (in the process of changing into melanoma) removed 2 years ago and was told he was fine, just keep going to the dermatologist for checkups. He did. The derm never found a thing.
Late February, he noticed some tenderness under his arm. A month later when we finally got a biopsy, the area was swollen and bulging out under his arm. Melanoma. We had no idea.
Don't wait. Find yourself a melanoma specialist right away. You don't want to fool around, here. You want someone who specializes in what you have because there are so many new treatments and trials now, and your doctors should know about them.
If you don't know of a good cancer hospital in your area, let us know your general area and we can let you know what's available.
Fear is healthy, but don't let it consume you. You NEED a support person. I don't know who you have in your life, but find someone you can trust to be that person for you. It is essential you take someone with you when you go to your appointments, because trust me, you will won't remember about 75% of what you're told.
And yes, you need to talk to your kids. I don't know how old they are, but they need to be told something. Our kids are 14 and 13. Once we found out he had melanoma, we talked to them and told them his melanoma had come back, and that it was more serious this time, he was going to have to see cancer doctors, etc. We had a second talk with them when we found out he was Stage IV.
It stinks that you are part of our group, but for all that, it's a great bunch of people here. Lots of supportive people on the same road as you. It does really help to have people you can talk to that know exactly what you're going through! Also, it's a great place to ask questions, because usually someone knows the answer, or knows how you can find the answer.
Michelle, wife of Don
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- June 22, 2011 at 12:03 am
Steve,
My husband and I can relate to your situation. He, like you, was a healthy guy. He'd had a in-situ melanoma (in the process of changing into melanoma) removed 2 years ago and was told he was fine, just keep going to the dermatologist for checkups. He did. The derm never found a thing.
Late February, he noticed some tenderness under his arm. A month later when we finally got a biopsy, the area was swollen and bulging out under his arm. Melanoma. We had no idea.
Don't wait. Find yourself a melanoma specialist right away. You don't want to fool around, here. You want someone who specializes in what you have because there are so many new treatments and trials now, and your doctors should know about them.
If you don't know of a good cancer hospital in your area, let us know your general area and we can let you know what's available.
Fear is healthy, but don't let it consume you. You NEED a support person. I don't know who you have in your life, but find someone you can trust to be that person for you. It is essential you take someone with you when you go to your appointments, because trust me, you will won't remember about 75% of what you're told.
And yes, you need to talk to your kids. I don't know how old they are, but they need to be told something. Our kids are 14 and 13. Once we found out he had melanoma, we talked to them and told them his melanoma had come back, and that it was more serious this time, he was going to have to see cancer doctors, etc. We had a second talk with them when we found out he was Stage IV.
It stinks that you are part of our group, but for all that, it's a great bunch of people here. Lots of supportive people on the same road as you. It does really help to have people you can talk to that know exactly what you're going through! Also, it's a great place to ask questions, because usually someone knows the answer, or knows how you can find the answer.
Michelle, wife of Don
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- June 22, 2011 at 3:22 pm
Hi Steve,
You and I have something in common: never had a mole in my life and melanoma was found in a lymph node. The lymph node I had with the melanoma was about the size of a goose egg. The last thing anyone expected was melanoma.
You may want to address this with your wife and then between the two of you figure out what to tell the kids. This is a very scary time and you will need a good emotional support system. You have a lot more courage than I did when I was first given the diagnosis. I was afraid to read anything about melanoma, even come to this site. I was that freaked out. When I became emotionally more stable I started coming here and now wish I hadn't been such a fraidy cat from the get go. Don't be afraid to ask your doctor for some medication to help you cope with this.
You've been given good advice about seeking out a melanoma specialist in your area. Easiest way is to search for hospitals near you that have melanoma clinics. I cannot stress how important this is.
The scans are important to get to give the docs an idea of what's going on with your body. They need to be done to determine if the melanoma has spread. Once your scan results are in, doctors will be able to determine a course of action.
Linda
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- June 22, 2011 at 3:22 pm
Hi Steve,
You and I have something in common: never had a mole in my life and melanoma was found in a lymph node. The lymph node I had with the melanoma was about the size of a goose egg. The last thing anyone expected was melanoma.
You may want to address this with your wife and then between the two of you figure out what to tell the kids. This is a very scary time and you will need a good emotional support system. You have a lot more courage than I did when I was first given the diagnosis. I was afraid to read anything about melanoma, even come to this site. I was that freaked out. When I became emotionally more stable I started coming here and now wish I hadn't been such a fraidy cat from the get go. Don't be afraid to ask your doctor for some medication to help you cope with this.
You've been given good advice about seeking out a melanoma specialist in your area. Easiest way is to search for hospitals near you that have melanoma clinics. I cannot stress how important this is.
The scans are important to get to give the docs an idea of what's going on with your body. They need to be done to determine if the melanoma has spread. Once your scan results are in, doctors will be able to determine a course of action.
Linda
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- June 23, 2011 at 12:33 am
wow thanks everyone for writing to me, getting my scan tomorrow. No use really telling my kids. My son is 3 and my lil girl just turned 1. I have 50/50 custody with my boy an full custody of my little girl. I do have an amazing woman in my life and my whole family pretty much knows bout my situation as of this morning and everyone is been positive and supportive. I'll be sure to keep this updated, Steve
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- June 23, 2011 at 12:33 am
wow thanks everyone for writing to me, getting my scan tomorrow. No use really telling my kids. My son is 3 and my lil girl just turned 1. I have 50/50 custody with my boy an full custody of my little girl. I do have an amazing woman in my life and my whole family pretty much knows bout my situation as of this morning and everyone is been positive and supportive. I'll be sure to keep this updated, Steve
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- June 23, 2011 at 2:09 pm
Steve,
Very best of luck to on your scan today. So glad to hear you have a support group! That's really important. Yes, your kids are quite young, so I can understand how talking to them about it wouldn't help much.
Please let us know how it goes, okay?
Michelle
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- June 23, 2011 at 2:09 pm
Steve,
Very best of luck to on your scan today. So glad to hear you have a support group! That's really important. Yes, your kids are quite young, so I can understand how talking to them about it wouldn't help much.
Please let us know how it goes, okay?
Michelle
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- July 30, 2011 at 6:28 am
Hey Steve, just had my right leg amputated on June 7th b/c of Clear cell sarcoma which used to be known as soft tissue mealnoma. My tumor was in my foot anf was 2.7 cm. Anything greater than 5 cm is really bad. My tumoor was first removed in 09 and pet scans showed it coming back in my foot and ankle and biopsies cinfirmed so I amputated. Get the measurments of the tumor. Make sure the doctors do a sentinal Lymph node biopsi, this will tell if your cancer has spread. The tumor is in a bad spot and it looks like your gonna loose a good bit. A sarcoma specalist would probably take ypour whole arm and allot of your shoulder. Your Tumor is huge im sorry to say, If it is Clear cell sarcoma with a tumor that big you have a vey aggressive type and more tumors are sure to start showing up. Studies show tumors greater than 5 cm are more likley to spread through the lymph nodes and tumors take over. Dont take this as a joke please go very aggresseive because thats was a gigantic tumor and if tumors take over your body its not gonna be good. Look me up on youtube my name on there is Kmrosserjr i have documentaries and stuff and I would like to follow your story, Good luck Steve I will pray for you and your family.
Miles Rosser
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- July 30, 2011 at 6:28 am
Hey Steve, just had my right leg amputated on June 7th b/c of Clear cell sarcoma which used to be known as soft tissue mealnoma. My tumor was in my foot anf was 2.7 cm. Anything greater than 5 cm is really bad. My tumoor was first removed in 09 and pet scans showed it coming back in my foot and ankle and biopsies cinfirmed so I amputated. Get the measurments of the tumor. Make sure the doctors do a sentinal Lymph node biopsi, this will tell if your cancer has spread. The tumor is in a bad spot and it looks like your gonna loose a good bit. A sarcoma specalist would probably take ypour whole arm and allot of your shoulder. Your Tumor is huge im sorry to say, If it is Clear cell sarcoma with a tumor that big you have a vey aggressive type and more tumors are sure to start showing up. Studies show tumors greater than 5 cm are more likley to spread through the lymph nodes and tumors take over. Dont take this as a joke please go very aggresseive because thats was a gigantic tumor and if tumors take over your body its not gonna be good. Look me up on youtube my name on there is Kmrosserjr i have documentaries and stuff and I would like to follow your story, Good luck Steve I will pray for you and your family.
Miles Rosser
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- June 24, 2011 at 3:09 am
Steve,
Glad to see you have reached out — it's tough in the beginning, and even two years later :-)I'm so sorry you have to deal with the added stress of insurance, medical costs — and the tender age of your young children. One thing to note is that your children need to be protected from the sun – you have enough to worry about, but genetics increase their vulnerability. Take one day at a time, inform yourself but don't surf the internet too much, and don't forget that every day is a gift. Keep us posted and hang in there!
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- June 24, 2011 at 3:09 am
Steve,
Glad to see you have reached out — it's tough in the beginning, and even two years later :-)I'm so sorry you have to deal with the added stress of insurance, medical costs — and the tender age of your young children. One thing to note is that your children need to be protected from the sun – you have enough to worry about, but genetics increase their vulnerability. Take one day at a time, inform yourself but don't surf the internet too much, and don't forget that every day is a gift. Keep us posted and hang in there!
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- June 24, 2011 at 3:09 am
Steve,
Glad to see you have reached out — it's tough in the beginning, and even two years later :-)I'm so sorry you have to deal with the added stress of insurance, medical costs — and the tender age of your young children. One thing to note is that your children need to be protected from the sun – you have enough to worry about, but genetics increase their vulnerability. Take one day at a time, inform yourself but don't surf the internet too much, and don't forget that every day is a gift. Keep us posted and hang in there!
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- June 24, 2011 at 3:09 am
Steve,
Glad to see you have reached out — it's tough in the beginning, and even two years later :-)I'm so sorry you have to deal with the added stress of insurance, medical costs — and the tender age of your young children. One thing to note is that your children need to be protected from the sun – you have enough to worry about, but genetics increase their vulnerability. Take one day at a time, inform yourself but don't surf the internet too much, and don't forget that every day is a gift. Keep us posted and hang in there!
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- July 26, 2011 at 6:53 pm
So they have now determined I have Soft Tissue Melanoma, i have to go back to get more tissue removed from where the tumor came out of me, then radiation and chemo. I have nothing on my skin that showed up in the PET scan, and doctors looked over me a few times. I dont know much about soft tissue melanoma, anyone else have this crap?
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- July 26, 2011 at 6:53 pm
So they have now determined I have Soft Tissue Melanoma, i have to go back to get more tissue removed from where the tumor came out of me, then radiation and chemo. I have nothing on my skin that showed up in the PET scan, and doctors looked over me a few times. I dont know much about soft tissue melanoma, anyone else have this crap?
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- July 27, 2011 at 5:37 pm
YES!
I am a seven year survivor of Clear Cell Sarcoma of the Soft Tissue. It also goes by Melanoma of the soft parts, Soft Tissue Melanoma and a couple of other various names.
If this is what you have this is what I know and what you need to look into.
It's rare, I mean very very rare. About 400 published reports of it since in discovered in the the 60's. Only about eight diagnosed yearly in the world. Most likely your doctor has never seen this before. You need to know if he has. It does not respond to radiation or Chemo. The size of your tumor matters.
This is what I would do:
Go get seen by one of two types of doctors that specialize in the type of cancer.
Orthopedic Oncologist only about 120 in the whole county.
or a Sarcoma Specialist. You have a Sarcoma. I don't know much these guy but they are more common.
Your prognoses and its not good, this apply only to Clear Cell Sarcoma of the Soft Tissue and I am pretty sure that is what you have and check with your doctor and get a copy of the pathology report. Hopefully the pathologist send it out for a second opinion.
Numbers: 45% to 65 % live five years. Only 10% live ten years or more. Sorry. I have read of people living 28 and 23 years. Its very rare so its hard to get a numbers and when you do they are bad so move on to what you can do.
Get to doctors that specialize in treating Soft Tissue Sarcoma's.
You have grown a cancerous tumor and you need to stop feeding them. Don't eat dairy or red meat. Change your diet to cancer fighting foods. You have cancer stop feeding cancer.
Look up Angiogenesis and Tumors their are some videos, good information about how tumors grow.
I am also in touch by email with of about 15 other with this type of cancer you are welcome to join us. I live in Orange County Ca, we can meet. I have wife and two kids.
If you got what I got it wants to kill you! You are in a fight for your life! I hope you win!
Darryl
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- July 27, 2011 at 5:37 pm
YES!
I am a seven year survivor of Clear Cell Sarcoma of the Soft Tissue. It also goes by Melanoma of the soft parts, Soft Tissue Melanoma and a couple of other various names.
If this is what you have this is what I know and what you need to look into.
It's rare, I mean very very rare. About 400 published reports of it since in discovered in the the 60's. Only about eight diagnosed yearly in the world. Most likely your doctor has never seen this before. You need to know if he has. It does not respond to radiation or Chemo. The size of your tumor matters.
This is what I would do:
Go get seen by one of two types of doctors that specialize in the type of cancer.
Orthopedic Oncologist only about 120 in the whole county.
or a Sarcoma Specialist. You have a Sarcoma. I don't know much these guy but they are more common.
Your prognoses and its not good, this apply only to Clear Cell Sarcoma of the Soft Tissue and I am pretty sure that is what you have and check with your doctor and get a copy of the pathology report. Hopefully the pathologist send it out for a second opinion.
Numbers: 45% to 65 % live five years. Only 10% live ten years or more. Sorry. I have read of people living 28 and 23 years. Its very rare so its hard to get a numbers and when you do they are bad so move on to what you can do.
Get to doctors that specialize in treating Soft Tissue Sarcoma's.
You have grown a cancerous tumor and you need to stop feeding them. Don't eat dairy or red meat. Change your diet to cancer fighting foods. You have cancer stop feeding cancer.
Look up Angiogenesis and Tumors their are some videos, good information about how tumors grow.
I am also in touch by email with of about 15 other with this type of cancer you are welcome to join us. I live in Orange County Ca, we can meet. I have wife and two kids.
If you got what I got it wants to kill you! You are in a fight for your life! I hope you win!
Darryl
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- July 27, 2011 at 5:38 pm
YES!
I am a seven year survivor of Clear Cell Sarcoma of the Soft Tissue. It also goes by Melanoma of the soft parts, Soft Tissue Melanoma and a couple of other various names.
If this is what you have this is what I know and what you need to look into.
It's rare, I mean very very rare. About 400 published reports of it since in discovered in the the 60's. Only about eight diagnosed yearly in the world. Most likely your doctor has never seen this before. You need to know if he has. It does not respond to radiation or Chemo. The size of your tumor matters.
This is what I would do:
Go get seen by one of two types of doctors that specialize in the type of cancer.
Orthopedic Oncologist only about 120 in the whole county.
or a Sarcoma Specialist. You have a Sarcoma. I don't know much these guy but they are more common.
Your prognoses and its not good, this apply only to Clear Cell Sarcoma of the Soft Tissue and I am pretty sure that is what you have and check with your doctor and get a copy of the pathology report. Hopefully the pathologist send it out for a second opinion.
Numbers: 45% to 65 % live five years. Only 10% live ten years or more. Sorry. I have read of people living 28 and 23 years. Its very rare so its hard to get a numbers and when you do they are bad so move on to what you can do.
Get to doctors that specialize in treating Soft Tissue Sarcoma's.
You have grown a cancerous tumor and you need to stop feeding them. Don't eat dairy or red meat. Change your diet to cancer fighting foods. You have cancer stop feeding cancer.
Look up Angiogenesis and Tumors their are some videos, good information about how tumors grow.
I am also in touch by email with of about 15 other with this type of cancer you are welcome to join us. I live in Orange County Ca, we can meet. I have wife and two kids.
If you got what I got it wants to kill you! You are in a fight for your life! I hope you win!
Darryl
-
- July 27, 2011 at 5:38 pm
YES!
I am a seven year survivor of Clear Cell Sarcoma of the Soft Tissue. It also goes by Melanoma of the soft parts, Soft Tissue Melanoma and a couple of other various names.
If this is what you have this is what I know and what you need to look into.
It's rare, I mean very very rare. About 400 published reports of it since in discovered in the the 60's. Only about eight diagnosed yearly in the world. Most likely your doctor has never seen this before. You need to know if he has. It does not respond to radiation or Chemo. The size of your tumor matters.
This is what I would do:
Go get seen by one of two types of doctors that specialize in the type of cancer.
Orthopedic Oncologist only about 120 in the whole county.
or a Sarcoma Specialist. You have a Sarcoma. I don't know much these guy but they are more common.
Your prognoses and its not good, this apply only to Clear Cell Sarcoma of the Soft Tissue and I am pretty sure that is what you have and check with your doctor and get a copy of the pathology report. Hopefully the pathologist send it out for a second opinion.
Numbers: 45% to 65 % live five years. Only 10% live ten years or more. Sorry. I have read of people living 28 and 23 years. Its very rare so its hard to get a numbers and when you do they are bad so move on to what you can do.
Get to doctors that specialize in treating Soft Tissue Sarcoma's.
You have grown a cancerous tumor and you need to stop feeding them. Don't eat dairy or red meat. Change your diet to cancer fighting foods. You have cancer stop feeding cancer.
Look up Angiogenesis and Tumors their are some videos, good information about how tumors grow.
I am also in touch by email with of about 15 other with this type of cancer you are welcome to join us. I live in Orange County Ca, we can meet. I have wife and two kids.
If you got what I got it wants to kill you! You are in a fight for your life! I hope you win!
Darryl
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- July 27, 2011 at 9:18 pm
Yea you told me pretty much what I gathered by google! Fuckit we’re all going to die anyhow. At least I got the fire under my ass now to live life for the things that matter. Its really all I been doing since all this started. I’m waiting for a call for my next surgery to remove more tissue from the tumor area that was under my arm. It was huge. Like baseball huge! Deep under my arm it grew that way in about 6 months. I feel amazing right now health wise. Its hard to believe that there is anything at all wrong with me. My doctor was saying I’ve been kind of a hot topic the last few weeks cause it so rare, but there general consensus was that they are going to remove more tissue from where the tumor was removed, then they are going to start me on radiation and then interferon. is it pointless to go through all that? I just turned 30 years old and I’m in good overall health! Everything but some rare crazy killer cancer I guess! -
- July 27, 2011 at 9:18 pm
Yea you told me pretty much what I gathered by google! Fuckit we’re all going to die anyhow. At least I got the fire under my ass now to live life for the things that matter. Its really all I been doing since all this started. I’m waiting for a call for my next surgery to remove more tissue from the tumor area that was under my arm. It was huge. Like baseball huge! Deep under my arm it grew that way in about 6 months. I feel amazing right now health wise. Its hard to believe that there is anything at all wrong with me. My doctor was saying I’ve been kind of a hot topic the last few weeks cause it so rare, but there general consensus was that they are going to remove more tissue from where the tumor was removed, then they are going to start me on radiation and then interferon. is it pointless to go through all that? I just turned 30 years old and I’m in good overall health! Everything but some rare crazy killer cancer I guess! -
- July 27, 2011 at 11:49 pm
This next surgery is the most important. They have to get it all. Your on a Melanoma massage broad and you do not have a melanoma. You have a Sarcoma, a very aggressive Sarcoma. You need to see doctors that specialize in Sarcoma's. Your life depends on this next surgery and its outcome. You need to be seen by a Sarcoma specialist. Your doctor should should be talking about amputation not radiation. The must get it all or take the arm off. Sorry. Do you want to see your children go to school or junior high school or maybe graduate from high school? How long you live depends on this next surgery. This surgery if done wrong you will die within the next couple of years. Done right and maybe you can see your kids grow up.
I see an orthopedic oncologist every year and we talk about patients that he sees that have come and gone. One common thread is that others doctors send him patients after its too late. They screw up the surgeries. Everything you have written suggest these doctors are not Sarcoma specialist. Your cancer can and will open doors. There are Sarcoma center with specialist and Orthopedic Oncologist all over the county, go see one NOW.
I am seven years with this cancer and I plan to make it to ten and beyond. I know it will kill me one day but not today.
Good luck
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- July 27, 2011 at 11:49 pm
This next surgery is the most important. They have to get it all. Your on a Melanoma massage broad and you do not have a melanoma. You have a Sarcoma, a very aggressive Sarcoma. You need to see doctors that specialize in Sarcoma's. Your life depends on this next surgery and its outcome. You need to be seen by a Sarcoma specialist. Your doctor should should be talking about amputation not radiation. The must get it all or take the arm off. Sorry. Do you want to see your children go to school or junior high school or maybe graduate from high school? How long you live depends on this next surgery. This surgery if done wrong you will die within the next couple of years. Done right and maybe you can see your kids grow up.
I see an orthopedic oncologist every year and we talk about patients that he sees that have come and gone. One common thread is that others doctors send him patients after its too late. They screw up the surgeries. Everything you have written suggest these doctors are not Sarcoma specialist. Your cancer can and will open doors. There are Sarcoma center with specialist and Orthopedic Oncologist all over the county, go see one NOW.
I am seven years with this cancer and I plan to make it to ten and beyond. I know it will kill me one day but not today.
Good luck
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- July 28, 2011 at 12:12 am
anyhow im on the good oe facebook too. https://www.facebook.com/stevehockii
<a href="http://photobucket.com" target="_blank"><img src="http://img.photobucket.com/albums/v92/stereostevo/250445_1776576936544_1302967109_31533821_5809109_n.jpg" border="0" alt="Photobucket"></a>
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- July 28, 2011 at 12:12 am
anyhow im on the good oe facebook too. https://www.facebook.com/stevehockii
<a href="http://photobucket.com" target="_blank"><img src="http://img.photobucket.com/albums/v92/stereostevo/250445_1776576936544_1302967109_31533821_5809109_n.jpg" border="0" alt="Photobucket"></a>
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- July 28, 2011 at 12:14 am
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- July 28, 2011 at 12:14 am
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- July 28, 2011 at 5:51 pm
Thats big ass lump!
I don't remember but assume you were missed diagnosed when you first show this to a doctor, most of us had the lump for years and the doctors told it was noting. I assume you move on to oncologist and some kind of surgeons. Probably a team of doctors and you are the hottest topic today. They have probably read every reported case all four hundred of them, they are prepared. They are good people you want to trust them with you life.
You posted looking for others with this rare cancer. I found your post because I have this cancer and I have search engines looking for and people with this cancer. I found you because some replied talking about the proper names for this cancer and used the term Clear Cell Sarcoma and my search engine found it and alerted me to your post.
I not here to pray or comfort you. You will get plenty of that when your dying. I hate this cancer. I am a vegan and I like meat but I want to live. I don't use deodorants so have to shower every few hour or I smell. My toothpaste doesn't have fluoride. At first glance people think I am health freak. I didn't get here overnight but slowly I got here. I never stop learning and making small changes to my life style, I want to live.
Their is only you and I in this conversation. I know of others with this cancer and they are more of the pray and comfort type. One day this cancer is going to kill you and I. I am seven years in so I am either closer to death or farther away then you. I don't know which. Death is coming to everyone.
If somebody got a gun to your head do you want the first cop to show up and try and shoot the guy in head or would you rather wait for a swat team with a sharp shooter?
Here is a list of qualified center in California or get to a Orthopedic Oncologist. Your cancer is rare and it will open doors for you. Call one of these centers. You only get one shot at this next surgery and you want the best. Got this off the web. This cancer will kill you one day just not today. These guy will help you live longer.
The following is a list of some of the medical centers and hospitals specializing in sarcoma. While the list is not comprehensive, it includes the leaders in sarcoma research and treatment. Because sarcomas are rare, it is important to find physicians and multidisciplinary treatment centers that have experience with this disease. We hope the following list makes finding a specialist easier to accomplish.
California
Cedars Sinai
Los Angeles, CACity of Hope
Duarte, CAChildren’s Hospital of Los Angeles
Los Angeles, CAStanford University Cancer Center
Palo Alto, CAUniversity of California Davis Sarcoma Program
Davis, CAUCLA Sarcoma Program
Los Angeles, CAUniversity of California, San Francisco
San Francisco, CA -
- July 28, 2011 at 5:51 pm
Thats big ass lump!
I don't remember but assume you were missed diagnosed when you first show this to a doctor, most of us had the lump for years and the doctors told it was noting. I assume you move on to oncologist and some kind of surgeons. Probably a team of doctors and you are the hottest topic today. They have probably read every reported case all four hundred of them, they are prepared. They are good people you want to trust them with you life.
You posted looking for others with this rare cancer. I found your post because I have this cancer and I have search engines looking for and people with this cancer. I found you because some replied talking about the proper names for this cancer and used the term Clear Cell Sarcoma and my search engine found it and alerted me to your post.
I not here to pray or comfort you. You will get plenty of that when your dying. I hate this cancer. I am a vegan and I like meat but I want to live. I don't use deodorants so have to shower every few hour or I smell. My toothpaste doesn't have fluoride. At first glance people think I am health freak. I didn't get here overnight but slowly I got here. I never stop learning and making small changes to my life style, I want to live.
Their is only you and I in this conversation. I know of others with this cancer and they are more of the pray and comfort type. One day this cancer is going to kill you and I. I am seven years in so I am either closer to death or farther away then you. I don't know which. Death is coming to everyone.
If somebody got a gun to your head do you want the first cop to show up and try and shoot the guy in head or would you rather wait for a swat team with a sharp shooter?
Here is a list of qualified center in California or get to a Orthopedic Oncologist. Your cancer is rare and it will open doors for you. Call one of these centers. You only get one shot at this next surgery and you want the best. Got this off the web. This cancer will kill you one day just not today. These guy will help you live longer.
The following is a list of some of the medical centers and hospitals specializing in sarcoma. While the list is not comprehensive, it includes the leaders in sarcoma research and treatment. Because sarcomas are rare, it is important to find physicians and multidisciplinary treatment centers that have experience with this disease. We hope the following list makes finding a specialist easier to accomplish.
California
Cedars Sinai
Los Angeles, CACity of Hope
Duarte, CAChildren’s Hospital of Los Angeles
Los Angeles, CAStanford University Cancer Center
Palo Alto, CAUniversity of California Davis Sarcoma Program
Davis, CAUCLA Sarcoma Program
Los Angeles, CAUniversity of California, San Francisco
San Francisco, CA -
- July 28, 2011 at 6:11 pm
Well I appreciate the info! Ill make some calls today. Thanks for being so straight forward too. I hate sugar coating. Gonna make some calls. I wouldn’t mind knowing more about what kind of diet and things to avoid though! [email protected] -
- July 28, 2011 at 6:11 pm
Well I appreciate the info! Ill make some calls today. Thanks for being so straight forward too. I hate sugar coating. Gonna make some calls. I wouldn’t mind knowing more about what kind of diet and things to avoid though! [email protected]
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Tagged: cutaneous melanoma
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