Grapefruit sized sarcoma in muscle of upper arm, need to find best place to treat

maumeemom
maumeemom Member Posts: 1
edited March 2014 in Sarcoma #1
I'm writing to ask for your help with finding a doctor/hospital to treat my husband. We just now learned he has a large sarcoma in his . He is 47.

It is a grapefruit sized sarcoma in his arm that is growing in the muscle. His former doctor told him it was just a fatty tissue deposit not to worry about. He's been seen every year for the past seven years since he noticed it (small at first) He brought this to the attention of his PCP here in Toledo, Ohio (since it has gotten bigger) She sent him to a surgeon. The surgeon sent him for a MRI. The surgeon today told him that she is certain it is a large sarcoma and that he needs biopsy and treatment immediately and a chest x-ray to see if it has spread. Likely he has had this since childhood. She also said that he needs to go to Cleveland for treatment. We have been doing research, yet we need help to quickly find the best doctor.

We have excellent insurance and will go wherever we need to go to get treatment. I’m concerned about a local hospital biopsying it because I’m worried about it spreading worse and, from how his case sounds, it seems like he needs to get it taken out right away.

If this was you with this, where would you go? We need to find a doctor who will treat him right away. We have four school-aged children that need their daddy.

Thank you for any help you can lend.

Comments

  • lfitz6640
    lfitz6640 Member Posts: 2
    #2
    Treatment
    Sloan-Kettering in New York is the best! Proven.. We learned the hard way, (lost our son, 37 to angiosarcoma). No one could even diagnose his cancer, until slides were sent to Sloan. After much research, I am convinced you must get treatment at a facility that has the knowledge and experience to treat sarcomas. Get on their website and initiate an immediate consultation. Trust me.. I will keep you in prayer.
  • not24getkt
    not24getkt Member Posts: 1
    #3
    Best Place and Docs for Sarcoma
    Ive Had Malignant Fibrous Histiocytoma which is an agressive sarcoma.I would suggest that you get in touch with Dr. Richard Lackman and Dr. Arthur Staddon both are in the University of Pennsylvania Healthcare System working out of Pennsylvania Hospital. both are top docs in the states.Dr Lackman is a limb salvage expert probably the best in the U.S and Dr. Staddon is an onco that specializes in sarcoma treatments. They have saved my life Three times and even saved my leg
  • vicki125
    vicki125 Member Posts: 2
    #4
    Sarcoma treatment
    There are several cancer centers with specialists in sarcomas, and you do want someone who specializes in them. Not just any oncologist will do. I am being treated in Atlanta at Emory by an orthopedic oncologist who specializes in sarcomas. There are great specialists at Center for Sarcoma and Bone Oncology at Dana-Farber in Boston, the Mayo Clinic, M.D. Anderson Cancer Center, and Sloan-Kettering - these are the others we found when I was diagnosed with a liposarcoma of the right shoulder. The important thing is to find someone who specializes in soft tissue sarcomas. Look for an orthopedic oncologist to get on the right track. Sarcomas are rare enough that most oncologists haven't even seen one.

    Mine was about the size of an acorn, and my PCP thought it was just a lipoma. I had surgery and 7 weeks of radiation. Chemo was not recommended in my case. I will be followed every three months for at least 2 years, then 6 months, hopefully if nothing more shows up in 5 years I'll be done. My orthopedic oncologist is very optimistic.

    I'll be thinking of you.
    Vicki
  • DanielleN3
    DanielleN3 Member Posts: 3
    #5
    Rhabdomyosarcoma in Upper Thigh
    I would highly recommend Mass General Hospital. Dr. Edwin Choy. My Father was diagnosed last January with stage 4 rhadomyosarcoma. He just finished his last chemo cycle and there are no traces of the cancer at this point. My father was still able to work and his treatments didn't make him overly sick. They did a fantastic job considering a stage 4 cancer. Keeping you and your husband in my prayers.
  • bmscan
    bmscan Member Posts: 37
    #6
    Find an Orthopedic Oncologist
    Where I work there is a group that does research lab planning, and when I asked for myself the reply was Sloan-Kettering in New York. I have had 7 tumors, and talked with my orthopedic oncologist (in DC) about going there. His reply is that there is a group of orthopedic oncologists that keep closely in touch. He is in this group with SK.

    The other reply that you recieved about finding an orthopedic oncologist is true. They should know about liposarcoma! It is not like so much else, and they are rare.

    The biopsy surgery should be out-patient and should have a result right away (as in the O.R. ...if someone is coherent).

    The tough part is the waiting. Good luck. It can be worked... my first tumor was in 1998 and I am presently 3 years clear.
  • Derrick R.
    Derrick R. Member Posts: 1
    #7
    My Comments
    I was diagnosed with rhabdomyosarcoma in my shoulder/neck area about 8 years ago (I was 24 at the time). It was a fist sized growth and i had a biopsy performed in the local hospital by my normal doctor (this was in TN). The went in and did the biopsy and sent out the sample for results. The sample went all over the U.S. until it ended up at a University of Flordia. The office of B. Hudson Berrey, Jr, MD Professor; Chairman, Orthopaedics and Rehabilitation Orthopaedic Oncology, Orthopaedics, called me and told me that it was rhabdomyosarcoma. I drove down to Flordia immediatly and spend several more days going through some more tests (Check X-Rays, CT scans, Bone Scans, etc). Dr. Berry sent me home and told me that he was going to work on what chemo/radiation regiment would be best. He called me back down to U of F and explained my options and what the plan would be. He put me in contact with a Doctor at the Thompson Cancer Survival Center in Knoxville,TN (close to home)and Dr. Berry told them the regiment that I would be given. I went through the chemo and radiation close to my family and friends and then returned to FL for my follow up tests after treatment. The chemo and radiation was not easy but I always had the help of my family and friends and this helped me get through the bad days.I have now been cancer free for the last 8 years and have lived a completely normal life ever since Dr. Berry gave me my final check-up, after treatment.

    I hope this email helps in some way.

    Derrick R.
  • cbalfour
    cbalfour Member Posts: 3
    #8
    lfitz6640 said:

    Treatment
    Sloan-Kettering in New York is the best! Proven.. We learned the hard way, (lost our son, 37 to angiosarcoma). No one could even diagnose his cancer, until slides were sent to Sloan. After much research, I am convinced you must get treatment at a facility that has the knowledge and experience to treat sarcomas. Get on their website and initiate an immediate consultation. Trust me.. I will keep you in prayer.

    Sarcoma
    I have been trying to find a way to get my mom who just turned 56 last month medical help. First we were told she had a fatty mass in her right thigh from a surgeon in Muncie, IN. After he removed the mass he realized it was something more serious. Then we were sent to a doctor at Ball Hospital who referred us to I.U. to confirm that he appears to be Liposarcoma. This all started mid Jan 2010.We went to I.U. in Indianapolis IN. it was confirmed what she had. My mom did not get her first treatment of chemo until the end of March. First treatment was canceled due to the doctor went on vacation and forgot to order the chemo to be started. So we were sent back home to wait another week to start. Once we did get the chemo started we were told if the treatment with the chemo that was being used there was a back plan after the second treatment the doctor then told us he discussed with the IU doctor and they decided chemo was not going to help. We need to just make our mom comfortable and get hospice or leave her in the hospital. I very upset and truly feel that my mom has been pushed to the side due to she does not have good insurance and too young to get medicare to help pay the expenses. I learned recently would should have had PET Scan that we never had done. And trying to get help out of State is darn never impossible due to the insurance.

    Is there any help any where? Do miracles still happen?
  • tdch
    tdch Member Posts: 10
    #9
    cbalfour said:

    Sarcoma
    I have been trying to find a way to get my mom who just turned 56 last month medical help. First we were told she had a fatty mass in her right thigh from a surgeon in Muncie, IN. After he removed the mass he realized it was something more serious. Then we were sent to a doctor at Ball Hospital who referred us to I.U. to confirm that he appears to be Liposarcoma. This all started mid Jan 2010.We went to I.U. in Indianapolis IN. it was confirmed what she had. My mom did not get her first treatment of chemo until the end of March. First treatment was canceled due to the doctor went on vacation and forgot to order the chemo to be started. So we were sent back home to wait another week to start. Once we did get the chemo started we were told if the treatment with the chemo that was being used there was a back plan after the second treatment the doctor then told us he discussed with the IU doctor and they decided chemo was not going to help. We need to just make our mom comfortable and get hospice or leave her in the hospital. I very upset and truly feel that my mom has been pushed to the side due to she does not have good insurance and too young to get medicare to help pay the expenses. I learned recently would should have had PET Scan that we never had done. And trying to get help out of State is darn never impossible due to the insurance.

    Is there any help any where? Do miracles still happen?

    sarcoma
    Hi i know how you feel, we live in the UK and we have free national health service as you probably know, but my husband was treated for an infection in his right hand for a whole year. He had six operations for infection and osteomyolitus, . It was only when he went to have his stitches out that he was told a mistake had been made and epithelioid sarcoma was really the problem. He was told amputation of his right arm was the only option and after a biopsy and emi scans this was the next plan. After a week of taking in this terrible news he was told the results were not good and it had spread to lungs and lymph nodes. He is now undergoing chemotherapy and is in the middle of his third session. Luckily he hasn't had any side effects from the chemo except hair loss.
    He is going for a scan tomorrow to see if the chemo is having an effect. We are praying it has but around the original site there are several small nodules beginning to appear, which is really disturbing.
    I think you should keep praying and i hope a miracles does happen for your Mum and my husband, please keep in touch just sharing your worry helps.
  • jmarcian
    jmarcian Member Posts: 1
    #10
    My dad was diagnosed with
    My dad was diagnosed with LMS soft tissue sarcoma stage four (liver, lungs, and pancreas. He sees an oncologist at Danna Farber in Boston. Overall, he trusts his doctor there. She is caring, present, in the moment and never ready to run to the next patient. I find after appointments I write a summary of the meeting.. what I heard and send it to the MD and she will comment on my comments. The tricky part is my dad lives 3-4 hours away from Dana Farber and a local oncologist is overseeing the chemo (Doxil) and just switched to Gemzar today. I think the balance is quality of life vs treatment side effects and treatment effectiveness. My Dad and the oncologist are aiming for a quality of life over more radical options (surgery). I agree you go where folks have had more cases and experience with the type of cancer your husband has. The trick is the communication between that expert and the local MD administering the chemo. It is tough, you never really know what they are saying to each other. If it was up to me I would send a summary email to both after each visit and ask then to comment on my summary. My dad is from the "old school" do what the MD says... don't question them, ask questions ,but don't questions. I want to improve this part of my Dad's treatment. Anyway, we all just have today... and it is hard to stay in the moment. we are always on the verge of doing something else. That is all I can say, I hope you found a person you and your husband are comfortable with (trust) and does not get defense when you bring up your own ideas. THis is key: I find I have to get them out there, in the light of day
  • Sandy C.
    Sandy C. Member Posts: 4
    #11
    Treatment
    I have sacoma stage 4 and have found when my origanal onicologist had used the strongest chemo that targeted sarcoma with no results for me she referred me to Sarah Conner cancer research institute in Nashville, TN. I am currently on my second study and finally have some good results. The whole staff treats you like family. There are other places in Nashville. TN Onicology, Vanderbuilt Hospital, St Thomas Hospital. Hope this might help some one.
  • Cyork
    Cyork Member Posts: 1
    #12
    I'm sure you have already
    I'm sure you have already gone somewhere, but I am a 25 year old male with a baby on the way and was just diagnosed with a very rare type of sarcoma on my scalp and I am going to the # 1 cancer center in the world M.D Anderson Houston, Tx. They have a whole team at least 15 sarcoma doctors that sit down at a round table and discuss everyones case as a team. I was told so many untrue things at my first oncologist then came here and now have a great chance at beating this. I'm currently on chemotherapy and radiation and feeling great knowing I'm at the best place possible. Hope all is well if u need anything please let me know.
  • jjb2497
    jjb2497 Member Posts: 8
    #13
    not24getkt said:

    Best Place and Docs for Sarcoma
    Ive Had Malignant Fibrous Histiocytoma which is an agressive sarcoma.I would suggest that you get in touch with Dr. Richard Lackman and Dr. Arthur Staddon both are in the University of Pennsylvania Healthcare System working out of Pennsylvania Hospital. both are top docs in the states.Dr Lackman is a limb salvage expert probably the best in the U.S and Dr. Staddon is an onco that specializes in sarcoma treatments. They have saved my life Three times and even saved my leg

    malignant fibrous histiocytoma
    It seems really hard to find anyone that has had this type of Sarcoma. I was diagnosed in Feb 2010, had 2 surgeries in March, and 30 Radiation treatments. Did you do chemo the first time? The told me that only 1 in 20 people would benefit from the chemo and then the improvement would be very small (I think 10%). I didn't do the chemo but was told if it came back that I would need to do the chemo next time. It is scary that in so many of these stories it keeps coming back. I am doing MRI and CAT scans every 3 months.
  • u4art
    u4art Member Posts: 52
    #14
    Cyork said:

    I'm sure you have already
    I'm sure you have already gone somewhere, but I am a 25 year old male with a baby on the way and was just diagnosed with a very rare type of sarcoma on my scalp and I am going to the # 1 cancer center in the world M.D Anderson Houston, Tx. They have a whole team at least 15 sarcoma doctors that sit down at a round table and discuss everyones case as a team. I was told so many untrue things at my first oncologist then came here and now have a great chance at beating this. I'm currently on chemotherapy and radiation and feeling great knowing I'm at the best place possible. Hope all is well if u need anything please let me know.

    Sarcoma Treatment Centers
    MD Anderson, Houston Texas
    Dana Farber, Boston Mass
    Sloan Kettering, NYC NY
    University of Michigan Medical Center in Ann Arbor, Michigan

    ..all others have much less experience with Sarcomas
  • bellasbell
    bellasbell Member Posts: 6
    #15
    u4art said:

    Sarcoma Treatment Centers
    MD Anderson, Houston Texas
    Dana Farber, Boston Mass
    Sloan Kettering, NYC NY
    University of Michigan Medical Center in Ann Arbor, Michigan

    ..all others have much less experience with Sarcomas

    one more place...
    In case anyone lives in the south, I went to Moffit Cancer Hospital in Tampa Fla. They have a Sarcoma clinic. I had an excellent surgeon David Cheong-I had a 11cm liposarcoma stage 3 in my thigh-2 1/2 yrs ago and am in remission. I would highly rec. the hospital as did my surgery, chemo and radiation there. They even have a lodge families can stay there -its totally free for those who need to stay there for a while.
  • katherine71
    katherine71 Member Posts: 9
    #16
    bellasbell said:

    one more place...
    In case anyone lives in the south, I went to Moffit Cancer Hospital in Tampa Fla. They have a Sarcoma clinic. I had an excellent surgeon David Cheong-I had a 11cm liposarcoma stage 3 in my thigh-2 1/2 yrs ago and am in remission. I would highly rec. the hospital as did my surgery, chemo and radiation there. They even have a lodge families can stay there -its totally free for those who need to stay there for a while.

    yet another place
    Univ of Mich diagnosed my cancer. Hillman Cancer Center in Pittsburgh, PA. is another excellent hospital. You definately need a sarcoma specialist & an oncology orthopedic surgeon. I am pretty sure my surgeon studied in Houston.

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