Diagnosed with sarcoma? Let's share

Hi there. I've been diagnosed with kaposi sarcoma. Over 36 rounds of chemo, 4 different medications, just finished radiation. My lesions are terrible, it has knocked my self esteem, i am mostly covered, don't show any skin. Lesions don't seem to be fading despite all the treatments and being on ART. I'm at a loss for words.

I have been diagnosed with an echondroma (July 2023)by the radiologist who read my images but my oncologist said she felt it was actually a condrosarcoma and referred me to Mayo in Phoenix in July 2023. I just completed radiation for Lobular breast cancer that traveled to my lymphe nodes in May 2023 and I wonder if that could have turned it into cancer. My lab work has been what would be expected having gone through a lumpectomy and than 4 weeks of radiation (to breast only; did not radiate lymph nodes ??) but last Monday I had my labs drawn and about 5-6 of the items they test for were abnormal leading my oncologist to think I am leaning towards multiplemyloma. Have you had any blood work that was concerning to you oncologist? I am sorry to hear you are going through this. Chronic pain definitely effects your quality of life. Have they been able to help you with the pain? I have some pain in my rt femur where the tumor was found but as of yet it has been mild. The tumor is pretty big. 10cm x 2.2cm. How are you doing today? what treatments have they offered you? I am just wondering if you have been pleased with your treatment thus far. I'll say a prayer for you today.

My experience with Sarcoma: ongoing. I was dx’d with Sarcoma in 3/2021. I had a large growth removed by surgery from my thigh. It seemed to happen 10 years after a bad dog bite in that same area. (By my own dog!) It was a stage 3 from what I read. They used a Wound Vac to help heal the hole it left. It was very stressful and it was compounded by having a rough time trying to find a proper doctor to help me. One Emergency Room I felt was trying to kill me and that was after driving 3 hrs to get there. I was there for 6-8 hrs and they had me do an MRI scan on a machine that was roped off with Caution tape. They also had female EMT’s trying to take blood from me for lab work and they were very painful about it and one couldn’t even get a vein from me. But the other did. To have to leave there after all that with only more gauze for bandages to help me bandage the growth to try and keep it covered as it had started to bleed, was very frightening however the alternative seemed like they were hoping the way they were treating me I would die. This was at a hospital by the name of a huge mansion on Long Island NY where I grew up, so I always thought very well about that name and never expected to be treated that way. (Mistreated was more like it.) Upon getting back home I eventually found my way to a cancer surgeon back at associated with that hospital, and she seemed professional enough. I met her on a Zoom call and she had all my MRI pictures there on monitors behind where she was sitting. She said to me “are you tired of having that thing on your leg yet?” And I knew then that she was the right surgeon for me. She eventually was the surgeon as far as I know who did put me out and remove that growth. Although that’s another story. Everything was quite precarious though. I have tried to attribute the strange care to during the time of Covid. 2 years later (this past Spring) I landed in 2 Emergency Rooms over a period of 6 weeks, in severe right side pain. With a few different diagnosis’s. None of which seem to be 100% sure. I lost 15 lbs during that time and at one of the ER visits blood work indicated because I had stopped eating that my body was surviving off of my fat in my body. Diabetic ketoacidosis ? My key-tones were 3+ the lab report read. None of the doctors told me anything about this. I read it in my medical reports from them on the hospitals patient portal. Severe stress at home seemed to bring on the pain. I’ve had different relationship problems going on at home. The last time I was in an ambulance & the emergency room they had me on different pain killers Morphine, Hydrocodone &. Fentanyl. For about a week afterwards I did not feel well mentally I feel from all that. With the weight loss though I began to feel better and gradually was able to eat normal again but it took awhile. I thought I must have appendicitis due to such severe pain but they said no. I have had 2 abdominal CT Scans and an abdominal ultrasound. An Oncologist and a GYN additionally want me to have a Pet Scan and a transvaginal Ultrasound but I am reluctant to have them as I have a lot of dental problems and I did not react well to the abdominal CT scans and ultrasound. Meaning my abdomen ached for 3-5 days after those scans & ultrasound. (Not just on my right side which is what sent me to the ER to begin with.) These tests have been done at nearby hospitals. Not at Mayo. We don’t live near any Mayo Clinic hospitals. How long does it take on average to get a Pet Scan done? I have since joined a Redcap Causal Study thru that hospital due to that Sarcoma diagnosis, where I had the surgery done at. They just took 5 vials of blood from me about 4-6 weeks ago. I have been trying to find out the results of all that blood work but so far they aren’t telling me, no matter how many times I try to reach out to them to find out. I was told they use a lab in Chicago. I did recently get my hands on & read a lab report that I got from a plastic surgeons office who did the original biopsy on that growth on my thigh and it mentioned I am positive for something to do with that I am not getting enough protein in my diet. (I forget the wording.) I changed my diet some. I started in recent years with getting lightheaded & dizzy in the late morning after having little to eat for breakfast (I was never a big breakfast eater when I was growing up) but with adding more protein to my breakfasts recently I am not experiencing that anymore, (I did pass out once even.) However with the extra protein in the morning I am finding that now I am not as hungry for dinner but I am getting lightheaded & dizzy during the early evening instead. It could be due to lack of enough sleep also. I used to sleep 7 hrs no problem but in more recent years I am unable to do that and if I get 5 hrs sleep that’s alot. Sometimes I only get 3. Also my thyroid levels are up & down. My most recent thyroid lab work indicated everything is ok, but a year before that it said I had a higher level meaning hypothyroidism. I am not on any thyroid medication. These past few years I am losing more hair then usual. I have read it’s so important to get enough sleep!

Are you currently being seen at Mayo? I was diagnosed in July also and was referred to Mayo which took a while to get a call and get things scheduled. It seems once I was scheduled there things have been moving along. I found out that Chondrosarcomas do not respond to Chemo OR Radiation so my only choice in this is surgery which is major! My first surgery will be on Nov 27th and they will cut 3 nerves. I will no longer have bladder, colon, or sexual functions. The 2nd surgery is when they will cut out a large part of my sacrum. Seeing as my sacrum supports my pelvis, I will no longer be able to do certain things or lift anything heavy. If I fracture the remainder of my sacrum there is nothing they can do for me. After surgery I will have to learn to deal with a colostomy bag and also learn to cath myself. I won't be able to sit for 4-6 weeks. I can only be on my right side or standing. UGH...I am way too young to be dealing with all of this. (I am 55) It sounds like chondrosarcoma may be a genetic thing so I enrolled in the Mayo research. I have 9 appointments coming up before my surgery. I think they are looking for another cancer in my body. I get really nervous when they want more scans but at least they are being very thorough. I guess I just have to trust what they tell me and do what they tell me to do. I can't wait for all of this to be over wih although I'm sure I will have to deal with some of it the rest of my life and pray that cancer does not show up anywhere else down the road. I am so sorry to hear of everything you are going through. Lots of stress having to wait things out and wonder if they are doing the right things. I do trust the Mayo over any other clinic or hospital though. My doctors have been awesome!!! Prayers and hugs to you.

Good morning! My heart goes out to you. Ie been praying for you since I read your comments yesterday. I didn’t have time to respond but I haven’t been able to get you out of my mind. You must be terrified. Those things they want to do to you to save your life will also remove your quality of life? Is that how you see it?? I know sometimes it seems like we are backed in a corner and we aren’t given a choice. My first oncologist at City of Hope said to me when I told her I didn’t want to take hormone blockers (for breast cancer I had removed)“what are your options?” That was a slap in my face. I realtor I want to live I have to take them. I getting ready to start my 4th hormone blockers. I have bad arthritis and when I take the hormone blockers I become crippled. I limp and I can’t get out of my chair. I’m not a heavy person so it’s not my weight. It induces excruciating pain in all my joints. It’s aweful. So idk what I’m going to do. Now I’m faced with this possibility of bone cancer and I hear your story and I just can’t imagine how you must feel. I’m so sorry you are going through all this. You have had to make some life preserving decisions and I’m sure it’s not been easy. Do you have family and friend support? I’m curious what your symptoms were. What brought you to the doctor in the first place? You are right. . . . You are too young to be going through all of this. Did they say what causes it? You said it’s possibly genetic so maybe that IS the cause. The doctors I see just keep telling me “you have bad genes.” 🥲 I will keep praying for you.

I didn’t answer your question. I have waited 6 weeks for just an MRI of the echondroma/Chondrosarcoma in my rt femur at Mayo. I will finally get it done this Friday and I will see the surgeon next Wednesday Oct 18th. I have to admit I’m scared. My last blood work was indicative of bone cancer. My hips and back have hurt for a few years. I have a bad back so I thought that’s what it was but now I’m thinking it is the Chondrosarcoma that can only be repaired by surgical removal. If they have to amputate my leg and remove part of my hips and pelvis idk what I will do. Please let me know what your symptoms were.

I am happy to hear that you have a MRI coming up on Friday. Finally maybe some answers for you. Which surgeon are you seeing? I have Dr Karim and he is AWESOME!!! Explains things in a way you can actually understand and is very caring. I'm so happy I have him as my orthopedic oncologist. He told me that I most likely have had this cancer growing for a long time. I guess it is a slow growing cancer. Keep me updated on your progress and I will be praying for good news for you.
I do have lots of family and friend support which makes this all a little easier to deal with. I'm very thankful for that. How about you? Do you have support through everything you are going through? I hope so!!! My symptoms started last January when I started having constipation which eventually led to sciatic nerve problems. I was in horrendous pain across my whole right butt cheek. I saw SEVERAL doctors and even went to the chiropractor for weeks but it kept coming back. I could barely sit and it hurt constantly. They kept saying its this or that but I knew inside that something was going on. I finally left work one day and took myself to the ER. Finally found a Dr in the ER that did a MRI on me and found the mass on my sacrum. I was admitted to the hospital so they could do a biopsy. They sent my biopsy results down to Mayo and it even took them a couple months to finally figure out that it was Chondrosarcoma. No chemo or radiation....only surgery can take care of this type of cancer. I'm pretty nervous about my major life changes but I am not ready to die so I will deal with what is coming. I have never had a MAJOR surgery before so not sure what I will be waking up to besides pain. I just always tell myself that I will get through it. They do a major pre op exam down at Mayo so that makes me feel better anyway. Sometimes I just feel like this is all a bad dream!!!

I feel the exact same way. It was like life was great and normal and than overnight it changed. I have the same symptoms as you but I have also had back surgery in 2017(fusing L-3, l-4 and l-5) so I’m not sure if it’s from that or this tumor in my femur. Have you ever had another kind of cancer? Like I had breast cancer diagnosed last Nov 22,2022. Rt before I was supposed to open my home for 3 straight days of cooking and feeding and celebrating. The MRI is only if the large tumor in my femor and not in my hip and pelvic area like I had asked so I’m guessing I’ll have to go through a ton more of these imaging tests and scans before they figure out what’s wrong. My recent blood work revealed that I had bone cancer but she wants to run the labs again to make sure. I want to know but I'm afraid to go do the lab work. I keep putting it off. What kind of appts do you have coming up? You mentioned 9 appointments. That’s a lot!! I dread this MRI for this Friday. It’s at 6:45am and it’s a 90 minute scan. I can’t lay there that long with this bad back. Idk what im going to do. Did you ever do a 90 minute scan and how did you get through it? Im keeping you in prayer and praying they find a different less invasive removal and repair. Sleep well! Oh! Do you work full time too with all these pending appointments you have coming? Sweet dreams. I have to get to bed! Good night!

Dream.catchr, how did your appointments go? What did you learn? How are you doing?

I had a large sarcoma mass removed from my left leg a year ago..I then developed blood clots on my lungs
and now, after a PET scan I have a hypermetabolic mass on the right side of my colin..I had colin cancer
in 1999....I am now on Xarelto for my lungs and the doctor told me to stop two days before my procedure
on Friday where a tube will be inserted into my lungs for a biopsy to determine whether I have colin or
lung cancer or if it's an inflammation. I'd appreciate any suggestion, advice, hope, etc. thanks much for
your time. anna