Just got final confirmation that I have stage 3 cancer in my left leg. I don't know what to feel right now, other than a deep, yawning chasm of uncertainty so wide it's blocking my ability to even examine how I feel.
I had swelling in my leg that I noticed a while ago, but it wasn't painful and didn't cause any problems other than cramping. I didn't have health insurance at the time, because I was going back to school to finish my degree, and was living in savings from a previous job. I thought it was just a minor muscle tear. Then I got a job that required me to walk a lot of miles every day, and it quickly got larger, but I had to wait 3 more months for my health insurance to kick in before I could afford treatment.
Literally the first day my insurance kicked in, went to see a doctor who sent me for an MRI, which indicated a tumor, rather than a muscle issue. I got biopsied on my birthday, and the results just came back as low to intermediate grade liposarcoma, stage 3 because of the large size (19 x 13cm, yes, cm, not mm).
It's wrapped around my femoral artery as well as the nerve sheath for my leg, and up against the bone as well, so surgery is out of the question, unless the radiation shrinks it significantly. If I had to guess, right now I'm betting they'll end up taking my leg off, although the doctor seems more optimistic, but that was before I got the biopsy results back. I go tomorrow for a consult with the radiation oncologist, hopefully he'll tell me it's not as bad as what I've concluded from the posted results and my furious googling, but so far that hasn't been the trend. The only good news seems to be that it's not in my lungs yet, based on a chest CT.
Any time I try to reflect on my thoughts about this whole thing, I keep going back to the fact that if we lived in a country that gave healthcare to everyone, or at least didn't tie it directly to employment, this would have been found six full months ago, and we all know the difference early detection can make. I might very well die or lose my leg because of our incompetently structured system of medicine in this country.
I don't know what I wanted out of this post. Maybe just to put what's happening into words for me to refer to later. Maybe for people that's had similar experiences. I don't know. I don't know much of anything right now, it feels like.
Update from a diagnosis from the 2nd. The final biopsy report came back with an update from roundcell to this little monster.
Dr. Was not kind in breaking it to me, just via an email on not needing a spinal MRI.
Kaiser says this changes nothing for the plan. I still have my full body scan end of this week and surgery on the 24th. Only risk is near the sciatic nerve that is near the edge of the growth. Otherwise, 2/3rds of my hamstring will go along with the primary tumor on my right leg.
I know we have a few folks suffering from a leg one.
Does anyone have a PLS variant ? Or one where they list out EP features on the main tumor?
I’ve read articles that day chemo works for this type, and others say it’s resistant. I’m more interested in chemo in the event this little fucker has spread (which it seems to enjoy doing) or regrowing in the original site if anything is missed.
Last I’m looking for resource on beneficial CBD types to focus on along with if there’s been studies on moving to a keto diet that would starve the tumor of sugar.
I’ve asked my work for a “2nd review” via a partnership with Stanford and reach out to have a discussion with MD Anderson.
I was feeling pretty good with my chances and this latest news rocked me to my core.
Age : 39
Height : 180cm
Weight : 78kg
Gender : Male
On Medication : None
Smoking status : Vape (smoked almost my whole life, 3 years ago switched to vape)
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A quick bit of history will set this up:
Feb 2021 - Start having a low intensity pain in my lower left abdomen. Don't think much of it. Calling this "pain" is almost incorrect.. 1/10 on my personal pain scale, it comes and goes... Depending on position and I guess how full my intestines are. I sort of ignore it thinking meh it will just go away, maybe something I ate.
Mar 2021 - Has not gone away at this point. Go see a specialist. Right away he diagnoses me with an inguinal hernia. "You are going to need to find a surgeon... no huge rush but this will need to be taken care of".
Apr 2021 - Find a good surgeon, he confirms, inguinal hernia. Lets have your surgery late may.
May 2021 - Have the surgery.
June 2021 - Checkup / stitch removal. Everything looks great as far as the surgery goes. Healing up nicely.
Late June 2021 - Notice that after the post surgery pain has all pretty much gone away... The "pain" that led me to discovering the hernia and having it operated on is still there... Start massaging my lower abdomen and notice a bump near the spot where I feel the "pain".
Late June 2021 - First ultrasound. She confirms there is something there, says flat out its "not a tumor". Confirms its NOT on the intestine but rather on the abdomen muscle. Recommendation : physiotherapist.
Late June 2021 - Not too content with the first prognosis I find another doctor who has a better machine (the one that lights up the colors, blue green and red)... He says "yep there is something there, to me, it looks like a hematoma to me". Recommendation : MRI.
Late June 2021 - Visit the surgeon that did the hernia surgery. He says he does not "feel any sort of structure that would indicate anything to be too worried about" but says to be sure, we need to do an MRI.
Early July 2021 - MRI with contrast. Few days later I get the writeup.
Diagnosis : Lipoma-fibroma. 100% confirmation it is not on the intestine but rather between the 2 abdomen muscles. 100% confirmation that it is "fat" based. Size: 11mm x 7mm. I am translating this from non-english, but she also states that using the contrast agent it DOES NOT show characteristics of "mischievous nature" or "pathological nature"... I am reading this to say that it does not have "cancerous qualities". Further states that it has "morphologies of fibrous struc
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My Medical Oncologist is recommending I forgo recommended radiation treatment to try the effectiveness of multiple rounds of Trabectedin treatment for a liposarcoma in my leg. He has me scheduled to install a chest port for the IV next week. After doing some reading on the drug, it's method of action seems to be binding to the DNA repair mechanism of cells, and thus allowing the cancer to "mutate itself to death." While that sound at least moderately awesome, it also raises a concern for my long-term survival. That's that I'm only 46. This cancer, so far as they've scanned, is only on my left leg. If they were to remove my leg right now, presumably, I'd live another 30 years or so. What's going to be the effect of 3-6 rounds of Trabectedin binding to the DNA repair mechanism of my healthy cells in that time?
Am I worried over this for nothing? I can't find much discussion on the long-term side effect of this drug on the internet, presumably because it's largely used in people who already have metastatic sarcomas, and aren't likely to have time for long-term effects to appear. Anyone with any insight on this would be appreciated.
Sarcoma is a cancer. My father was a fighter and a hero to me. He was diagnosed with Liposarcoma 5 years ago and has never stopped fighting until today. He went through 4 surgeries to remove 7 tumors over the last five years. His cancer was so aggressive that the doctors recommended he go on a trial, which only made my dad suffer. The trial was unsuccessful and by then the growth rate of the tumors had multiplied to 160%. My father had been in the hospital for the past week due to the rate of growth in the tumors he currently had. He did not want to have my mom, brother and myself watch him suffer. As my mom walked out of the hospital room to use the phone to check in on me, he passed. He did not want to be resuscitated and could not handle the pain anymore. My brother and I came to see him after his passing at the hospital because they would only let my mom in before he passed. That was my first time seeing a human being dead. It was gut wrenching to see my father like that but we all knew he was finally out of the pain he had been struggling recently and for the last 5 years.
5'9" 230 lbs White Started about 15 years ago with just one non-painful lipoma. No smoking or recreational drugs. I drink lightly about 10 times per year (nothing this year though). I take Zoloft and Hydroxyzine daily, although I only started these a couple years ago.
These Lipoma have been getting worse as I age. From ages 13 to 18, I had 2 or 3 Lipoma with 1 removed. By the time I was 21, there were at least 50. Now I'm 28 and there's at least 100. Doctor said the painful ones are too deep in muscle to remove without permanent damage.
Ideally I'd love to remove them all, or at least the painful ones, but removing one costs close to $1,000. For now, I'm only removing the ones that are causing severe disruption in my life (not being able to get out of bed and/or talk due to extreme pain).
I recently learned about the existence of Liposarcomas. At what point should I be concerned? My wife is worried I'll get one close to my heart or another location that will cause serious damage.
I was diagnosed with a Well Differentiated Myxoid Liposarcoma on October 1st, 2018. The tumor was in my right thigh. This type of cancer doesn’t have stages but more so grades of severity. It was a 2nd grade but borderline grade 3 (3 being the worst). I had a surgery to have the tumor removed on October 19th, 2018. It left a 20in scar along my inner thigh. Some nerves were numb and are still numb to this day. The pathology report on the tumor resulted in negative margins all around. The tumor was slightly larger than a tennis ball. I was off work for 1 month until I was finally able to walk on my own.
The doctor recommended Intense 4 day In-patient Chemotherapy (4) times, 3 weeks apart. It started in January 2019 and ended in April 2019, 1 week before my 24th birthday. I would have a PIC line inserted on the first day to handle (3) 24hr drips of chemo drugs and have the PIC line removed upon leaving. The first stay was miserable. I threw up every other hour on the last (2) days and was forced to stay an extra (2) days. It got so bad, it felt like my teeth were being pulled out each time I threw up. The second stay was a little more manageable. I only threw up every other hour on the last day. The last two stays weren’t as bad. I didn’t throw up on those stays. The worst part about the chemo sessions, is having foods I loved now make me nauseous when I smell them. I still feel the side effects to this day.
Lastly on my treatment list was Radiation Therapy. I started on July 1st, 2019 and finished on August 16th, 2019. I was working in between Chemo sessions and during the first 3 weeks of radiation. At the start of the 4th week, my skin was borderline 3rd degree burns. I had to take off work for 3 weeks due to the amount of rubbing of my raw right thigh. I would only leave my house for treatments. The pain was comparable to the nausea from chemo.
The worst part of my long hard battle was the need for constant emotional support. I would crave attention, both physical and social. Some days I would cry myself to sleep and other nights I would have a panic attack. I would sometimes hope my coworkers would offer to hug me because I was too embarrassed or felt selfish to ask. I just wanted to cry into someone’s shoulder and tell me it would be okay.
In conclusion, I’ve had a few MRIs and CT scans of my leg, pelvis, chest and abdomen. I can say as of August 28th, 2019 that I am cancer free. It’s a wonderful feeling to know I endured so much to get to this po
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How accurately can a lipoma vs liposarcoma be determined by CT scan with contrast? Back in March 2017, I went in for a scan after having insurance for the first time in a few years. I had noticed a mass in my lower right abdomen that felt the size of a marble (my estimate) when getting a massage in summer of 2015, and then thought it was a form of hernia when I finally had it scanned, having grown to about 2 inches (per scan).
The doctor said it was a lipoma, and being stupidly optimistic that it could stop growing, I opted to not take it out with the hope of avoiding surgery. Fast forward to early this year, and it was still growing, so I decided to finally schedule the operation for May. With all the Covid stuff going on, it was postponed because it was deemed elective.
Now I'm having lots of anxiety and general symptoms like fatigue, nausea, etc, and worrying it's not just a lipoma.
I'm a 37 year old male, caucasian, and in generally good health. 5'8", 155 lbs with 15% bodyfat. I was never a big drinker, but I completely stopped last summer because over the past 5 years or so, alcohol started hitting me harder, to the point where I felt hungover after a few sips the last time I had it. My liver readings always come back normal, except for high bilirubin that my doctor thinks is Gilberts Syndrome. Never smoked cigarettes, and I did consume cannabis moderately for the past 10 years or so, mostly stopping recently due to how poorly I sleep if I consume close to bed time.
20 years old
I have a lump on my right hip (something VERY similar to these photos here http://www.hurren.com/procedures/other-procedures/lipomas/before-and-after-photos-lipoma/ - photos below "Lipoma right hip")
I don't know how long it's been there, but I think I started to feel it more than 4 months ago (my guess is 3 years ago when I fell pretty hard on the area, I felt something when palpating but I think it was very small then, but I may be wrong, I took an X Ray then and it was nothing unusual, so maybe I didn't have anything 3 years ago).
It doesn't hurt
It's very easy to move left-right with my fingers.
The skin not red or other colors
I don't feel others around it, just this one
I think it's a bit hard, but it's hard to tell because when I press on it, it moves. but between my fingers it seems hard
2 months ago I did an ultrasound and the doctor told me it's a lipoma and not to worry. (on the sheet it was written "probably lipoma" and that it's 10mmx6mm, but it feels bigger, it feels around 2-3cm large and 8cm long with my fingers)
It is not that visible on the surface, I have to put my fingers on my skin to feel it
My questions are:
- Can you determine 100% sure on an ultrasound that it's a lipoma? I've heard that it's hard to differentiate lipomas from liposarcoma on ultrasound.
- What is negative Doppler signal? (I don't know what this is)
- Can a lipoma be much smaller than you actually feel it when palpating?
Thank you for your answers, I appreciate it!
I was diagnosed with myxoid liposarcoma in july of 2014. The 13cm tumor was removed in August-2014, followed by 33 rounds of local-site radiation, and then three rounds of Adriamycin, Ifosfamide, and Mesna (AIM) regiment chemotherapy which ended in February 2015.
I had regular local site MRIs and CTs of my chest, abdomen, and chest conducted in the subsequent years with no signs of recurrence. I was released by my orthopedic and medical oncologist in May of 2019! (Yay, right?)
My question is will it ever be okay to give blood? I know the American Red Cross says it’s okay two years after treatments end, but that is a general statement made based on more common types of cancer than myxoid liposarcoma, and there just isn’t enough cases to study how it is potentially spread. I want to give blood but the thought of passing this cancer along is too much.
TL;DR i had a rare cancer years ago with recurrence rates that never drop to zero. Is it ever okay to give blood?
Age 36 Sex Male Height 6'3" Weight 365 lbs Race White Duration of complaint July 2019 Location Boston, MA Any existing relevant medical issues Tumor Current medications Zoloft, "men's" multivitamin, vitamin d, buproprion, senna, miralax, tylenol, dulcolax, dilaudid
Hello! I have been diagnosed with stage IV myxoid libosarcoma. By the time my doctors could find out what as going on, it had already exited my thigh and "landed" in my spinal column. One part in particular, the L5, was enlarged enough to seem to block at least some of the treatment, so my doctors tried to focus on shrinking that tumor in particular to alleviate the massive amount of pain I have experienced. My doctors' have determined that shrinking the L5 via radiation is not the best path to go on, and will be meeting on Monday to determine a better way.
Also I have already done two rounds of chemo, one on ATM, the latest on trabectedine. Three more I think? Latest plan was to continue on with the trabectedine, but that might have changed.
At the same time, in the back upper part of my thigh, a cavity developed that won’t embolize. So far, the only way to stop the bleed has been to wipe out the cavity, then stuff it with kerlix gauze and the put in a few sutures or tape to hold it together.
I know that I probably don’t have a lot of time, and I need to start making plans for visiting family and friends for the last time, right? But I can’t do that with this thigh thing hanging over me. So, what can I do? Thanks.
Hey People,
A few weeks ago I posted about being diagnosed with Liposarcoma. Had a CT of my chest to make sure it hasn't spread to my lungs.
My doctor just called up with the results and said my lungs looked clear. A huge sigh of relief. I've been having chest pains and breathing has been feeling weird, which caused some panic. I guess anxiety got the best of me, there.
Hey Everybody,
I recently had surgery to remove a 5-6cm Liposarcoma from my upper thigh. Margins came back clear, but it was recommended that I still receive radiation for it.
I was confused at why it was recommended since I've always been under the impression that clear margins meant you were good, but the radiation oncologist explained it to me. Because of the size of the tumor and the fact they couldnt take a large enough amount of extra tissue without severely impairing the function of my leg, ratiation can reduce odds of recurrence.
He told me to think about it and that it is ultimately up to me because there are pros and cons... one con being that I am young (25) and there's (hopefully) many many years left in my life for complications to occur because of the radiation.
Other cons such as potential impacts on my fertility, lymphedema, potential secondary cancer down the line, etc etc.
The only real pro is that it would bring the approximately 20% chance of recurrence down to like 10%. Doesn't seem like a lot, but that is a 50% increase in my odds. Also according to him, a liposarcoma recurrence is worse than the initial instance, which scares the shit out of me.
Honestly, I feel like I should do it even though my family hates the idea. Infertility sucks, but so does dying at a young age. My father died in his early 40's and it's always been my goal to at least make it past that age.
Has anyone here had any experience with external radiation around the pelvic area? How were the side effects? Anyone with similar cancer and location?
History
My 9 year old female lab mix has several lipomas that have developed over the last few years. Most have grown to at most the size of a grape and all have had a cytology performed.
She has one lipoma on her sternum slight off center that unfortunately did grow. I first noticed it about 3.5 years ago and it was the size of a golf ball. The check at the time came back just regular fat, another lipoma.
This lipoma grew over 1.5 years to about the size of small orange and then seemed to stop growing or grow very slowly. In the last 2 years it has barely grown.
It doesn't seem to bother her, affect her gait, etc but I did notice in the last several months the constant rubbing was working down the fur in the area. There is friction and weight on it if she is rolling around, lying down not on her side, etc. Basically lots of compression and rubbing. Lately I also noticed the skin the the area looked ever so mildly chaffed as well (not the entire lipoma, just the top that is being rubbed) and it was also getting very firm.
I decided it was time for another check up on the lipoma.
Vet visit + Test results
The vet performed several aspirations in house and looked under the slide and only saw fat. She then took 2 samples from deeper in the lipoma and noticed "other cells" that were suspicious enough to warrant sending off for examination.
The results came back somewhat inconclusive. The lab person primarily suggests it's a lipoma with inflamed tissue and inquired if the area suffer perhaps any trauma. They said they also couldn't entirely rule out liposarcoma.
My vet seems to think the chronic trauma to the lipoma of weight/rubbing/etc might be the "trauma" the lab describes, rather that some acute injury. The lipoma itself causes zero pain whatsoever. The vet didn't note anything abnormal with lymph node swelling, etc.
To be on the safe side I have a punch biopsy scheduled for next week
Questions
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As I always understood it is not possible (or very rare) for a lipoma to become a liposarcoma. It starts as one or the other and stays that way generally, correct?
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Could the weight, pressure and rubbing over time cause the lipoma to become more firm and/or present as trauma as is being suggested? It seems reasonable to me, but other opinions are valued.
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My understanding of liposarcomas is that they are generally fast growing and/or aggressive once matured. Considering my dog has had this lipoma festering for about 4 years would th
Sarcoma is a cancer. My father was a fighter and a hero to me. He was diagnosed with Liposarcoma 5 years ago and has never stopped fighting until today. He went through 4 surgeries to remove 7 tumors over the last five years. His cancer was so aggressive that the doctors recommended he go on a trial, which only made my dad suffer. The trial was unsuccessful and by then the growth rate of the tumors had multiplied to 160%. My father had been in the hospital for the past week due to the rate of growth in the tumors he currently had. He did not want to have my mom, brother and myself watch him suffer. As my mom walked out of the hospital room to use the phone to check in on me, he passed. He did not want to be resuscitated and could not handle the pain anymore. My brother and I came to see him after his passing at the hospital because they would only let my mom in before he passed. That was my first time seeing a human being dead. It was gut wrenching to see my father like that but we all knew he was finally out of the pain he had been struggling recently and for the last 5 years.
Sarcoma is a cancer. My father was a fighter and a hero to me. He was diagnosed with Liposarcoma 5 years ago and has never stopped fighting until today. He went through 4 surgeries to remove 7 tumors over the last five years. His cancer was so aggressive that the doctors recommended he go on a trial, which only made my dad suffer. The trial was unsuccessful and by then the growth rate of the tumors had multiplied to 160%. My father had been in the hospital for the past week due to the rate of growth in the tumors he currently had. He did not want to have my mom, brother and myself watch him suffer. As my mom walked out of the hospital room to use the phone to check in on me, he passed. He did not want to be resuscitated and could not handle the pain anymore. My brother and I came to see him after his passing at the hospital because they would only let my mom in before he passed. That was my first time seeing a human being dead. It was gut wrenching to see my father like that but we all knew he was finally out of the pain he had been struggling recently and for the last 5 years.
Sarcoma is a cancer. My father was a fighter and a hero to me. He was diagnosed with Liposarcoma 5 years ago and has never stopped fighting until today. He went through 4 surgeries to remove 7 tumors over the last five years. His cancer was so aggressive that the doctors recommended he go on a trial, which only made my dad suffer. The trial was unsuccessful and by then the growth rate of the tumors had multiplied to 160%. My father had been in the hospital for the past week due to the rate of growth in the tumors he currently had. He did not want to have my mom, brother and myself watch him suffer. As my mom walked out of the hospital room to use the phone to check in on me, he passed. He did not want to be resuscitated and could not handle the pain anymore. My brother and I came to see him after his passing at the hospital because they would only let my mom in before he passed. That was my first time seeing a human being dead. It was gut wrenching to see my father like that but we all knew he was finally out of the pain he had been struggling recently and for the last 5 years.
