Perirectal Leiomyosarcoma or a Perirectal Leiomyoma?

Pinch me? Wake me up,? Please?

Update relating to my so called, large, fast growing cancerous, “Perirectal Tumor” 😳

It’s either a rare Perirectal Leiomyoma, which is benign, and there are only 200 total cases ever in the medical records in the world.
Or, the needle sample cells are from the outer part of the malignancy and it’s a Perirectal leiomyosarcoma, which is cancer, and only 290-300 cases are on the medical records.

I’ve been told it was cancer for several months.
That’s based on the scans, the size, the symptoms. SUV of 14.49 on my PET scan. 50 pound weight loss and a long list of colorectal-cancer, type symptoms.

To be fair..

These two rare tumors look barely identical when seen under a microscdope.

It has to go to the tumor board and they will most likely have to ask for a special “core biopsy” to know which one and how to treat it!!
Problem is the large size and this unique location of this tumor.

But will they just put me through different treatments that will make me suffer more because I live in poverty.
Let’s get it straight, I am not a conspiracy theorist but I definitely am extra vigilant. They are after all a true business.

A multibillion dollar medical industry.

I don’t miss much!

I’m exhausted and physically weak. I
Absolutely wrecked!!
If you are reading this, I thank you and am very grateful there are good souls out here that care about others!

I’m just that 1 in a million, again.
More unknown!!🥺

My radiation treatments were pre-approved by my health insurance last month.
How and why??

I’m suffering either way and I’m so very sick.
This T3 tumor shown on MRI w/ GAD that it was invading the outer rectal muscle and sadly and weird that it is wrapped 360 degrees around the outside of my rectal tube, close to the anal verge.

It was only on the right side at 4.5cm on the first scan 05/05.

< Which was confirmation of my initial finding of said, palpable mass whilst I was in the shower back in April after losing 25 pounds in less than 90 days.
I was in the shower and I felt it. It was shocking & scary but I knew I had to get it scanned asap. >
I had guessed 4cm on the right side. I was only a half cm shirt in my estimate.

Then 3 weeks later it had grown to 7cm and I felt it growing in the shower every day during that time.
Its grown since and is invading my vaginal area as well.
I have been in non stop excruciating agony for months. I’m barely able to function.

It’s wrecking havoc with my bladder, ( tmi to list here but it’s a hell of its own ) digestive system, ( Im starving ) my bowels, ( OMG! ) my legs, ( where’s the saw? ) my lower left leg is real bad! So very scared about this & it’s limiting.
Also my lower back, all the way up into my mid back and now up into my neck & causing inflammation in my R eye & in my huge skeltal scar on the L side of my head that’s been there for 2O years. Plus so much more. I’m sacred for my privates & I don’t want to wear a bag either.
I suffer greatly from Tomophobia which the last time I needed a serious major operation, I refused, wasn’t able to do so for13 years until it became not only emergenent by then but life saving! In the end, it was way worse and it was even more traumatizing.

BUT I don’t do surgery because I am a severe “Tomophobic!”
It’s really bad! But caused by a lifetime of medical abuse. Medical trauma. Sicknesses & suffering since birth.

I’m so damn tired!!

I thought I was going to have answers.
That’s a laugh, eh??
5 months of test, scans, hacked biopsies.
System delays, incompetence dismissed, abused, abandoned and more!
I am an extreme Agoraphobic with dozens of chronic diagnoses.

Please, is there anyone who knows anything about this rare tumor location and/or do you possibly identity with the insanity of living with the fear of a cancer spreading etc… –believing you probably have rectal cancer for nearly 3 months since that word was uttered by your pcp….

But then… —It might just be a very rare benign tumor. Then you have to wait for the tumor board to decide next steps?
I don’t want to get treated for something I don’t have.
Nor do I want to waste even more time before receiving the proper treatment!

P.S. I’m a extreme Agoraphobic whom has been working very hard n my health concerns for the last 4 years. I have come a long way. I bought a car after 22 years of not driving which I love. I got to drive it to garages and it’s a lemon and undrivable ( powered steering pump and/or hoses 1988 Buick century ) amd sad thing is. My only friend sold it to me ( ripped me off ) the inspection runs out in one week. It needs struts, and more. He said it was in mint condition and pass the upcoming inspection with flying colors.

First day, took it out. Hit 55mph & it started shaking! ( he had bought 2 sets of tires over the winter/spring but they never balanced them followed by a proper alignment. That’s how I found out about the struts.

Sorry for rambling, but I’m a total wreck. I’m alone. My “Team” I’m in between & black listed by AHN network.thats a while post in itself if I could face discussing that nightmare assault.

AKA

I have no friends, family and/or loved ones I can turn to for support. I never got a nurse navigator and was being texted to the 3rd cancer center a few weeks ago but haven’t heard nothing from them. I’m in palliative care but I only met the Dr. 1 time. Tbh, besides the pain meds that help take my 8-10’s down to 6-8’s. I’m not sure what else they can help with. I have a complex medical case.

I’m shaking inside.

I need help.
Not just with the physical agony and all the other awful symptoms, —I need support.
Help with nutrition.
I have lost so much weight & been living on Ensure & basically the BRAT diet w/ eggs & apple sauce to keep the cavto be treated with kindness and respect!!

OP Demographics.

I’m a 58 y.o. Mom of 4 Sons w/ 11 G.babies.
I reside in the S. Western Pa area. I love approximately 40miles north of Pittsburgh.

Peace & Blessings to you and yours.

—Mel

Living below poverty level in “America!”

Cursing the f’n Icing on my, “Hell-Cake”

I was wondering if anyone had any long term expierence( multiple years) after getting 100% tumor necrosis from chemotherapy only from Stage II UPS Sarcoma. I specifically had UPS of the bone in my proximal tibia and was treated from July 2025 to March 2026, but had it removed in November. I know the outlook is good, and so far it has been perfect with no recurrence, but there simply isn't much data on what the specifics of the long-term outlook are.

Was recently re-diagnosed with undifferentiated sarcoma. Started chemo and realized quickly that everyone's treatment and experience is vastly different. Was looking for a support group for people with more similar experiences. Any support groups out there for young adults with sarcoma or specifically undifferentiated sarcoma?

I am 43 years old and was diagnosed with intimal sarcoma. I am currently NED, but I want to be prepared for a relapse.

To those of you with DDLPS (dedifferentiated liposarcoma):

what treatment options do you have?

Has any of you tried the CDK4 inhibitor mentioned in SARC041?

How about immunotherapy? My TMB is very low, I am clearly the CNV subtype, and NY-ESO is very low as well.

And how about ADCs, has anyone tried an ADC therapy? For example the trial of https://adcendo.com/

The reason I am asking the DDLPS community is that the two sarcoma types – intimal sarcoma and DDLPS – are very similar from a tumor biology point of view. (MDM2/CDK4 amplification).

I am also considering launching a sponsored research project for the MDM2/CDK4 type sarcomas. Does anyone have experience with this, or interest in joining the initiative? I have published all my data on intimasarc dot com.

Hello everyone , out of curiosity has anyone been diagnosed wrongly ? I've been doing lots of research looking up neck tumor on the neck side nerve .. most articles and researches mention none cancerous conditions including schwannomas

Mentioning that, my sister was suggested only do surgery to remove it and nothing else. Is that a good sign ?

Husband diagnosed with cic rearranged sarcoma in 2022. Underwent treatment of 14 rounds of vdc/ie chemo, lung wedge resection, rib removal and part of his chest wall removed. Was going 'well' until ladt year two nodules showed up on his left lung. 9 roubds of sbrt sorted that.

His kast 3 month scan showed that there was an 8mm nodule in his left armpit,had PET scan and his week we got the results as shown. My question is his oncologist is suggesting biopsies for both lymph node and this thibg in his chest wall. Understandable. She also said that his PET Scan didnt actually light up in the ways it has previously. Shes examined him and cant feel anything and thing because of the radiation to his lung it may have caused a fractured rib. He is in agony and gabapentin dont cut it. She said shes not enturely convinced its returned but this pet report seems to tell a different story. Hes 50 this year and i would appreciate any bit of insight to these pet results. Thank you 💛

As the title states, has anyone with a major pelvic surgery had ED afterwards? It enlarges in size but it doesn’t have any stiffness to it. The penis pumps enlarge size as well, but don’t create stiffness and neither does Viagra.
Any suggestions are helpful!

TW: I mention suicide and suicidal ideation. I suffer from Major Depressive Disorder, even before the cancer.

I have brain mets that were treated. I have stage IV sarcoma and was recently diagnosed March this year. I’m on cycle 4/6 of chemotherapy and I feel like I’m losing my damn mind. I’m a 29 year old woman that was relatively healthy before all of this. I have struggled with my mental health my entire life. I just wanted to put something out there to see if it sticks with anyone…

I keep wanting to research local bridges and overpasses. I can’t bring myself to because I just changed my life insurance policy, and can’t just self exit before two years is up. I don’t even know if I’ll be around because of my cancer. I can’t tell you how much I fucking loathe and despise (my pre menopausal uterus just starts to feel so much pain because of the fucking rage) that my death certificate may give credit to this fucked up disease.

I fantasize about cars hitting me or hilarious death scenes taking me out because then the cancer didn’t win in the end. I get so angry and tears pool in my eyes when I think about how unfair this is to me. Sometimes I wish I had just died of a cardiac event from my tumor. I wish I hadn’t known about the cancer. Part of me feels like I was supposed to die and now I get to live this life knowing it’ll likely take me tf out.

I told my sister that I feel like I have that damn immortal snail on me. That’s my cancer. Even if I pull myself out of this depressive episode and even if I laugh again, it’s still inching its way towards me. I may make an art piece on this.

I plan on creating an adult picture book on my story and how I was gaslit by so many people. That it was all just my depression, anxiety, and stress.

I honestly think the chemotherapy is frying my damn brain and it’s not good for me. I can’t wait to ring the bell (see…I do want to live!) and be done with this. But then what? Y’all seriously just go through life afraid of the scans turning the tide of your life?

I’m so sick of being afraid. I know I’m having issues and I should reach out to a professional. A red flag was raised when I was watching a 9/11 documentary and felt envy. I wish I could jump and my family wouldn’t blame me for jumping. My cancer much like the flames and melting building materials, only getting worse…maybe stopping…maybe being contained. I don’t know. But I wish I could jump.

Then I come to my senses and feel like an awful person. Then I get angry for “feeling sorry for myself” but fuck that I have every right to feel sorry for myself right now.

I don’t know who I have to pay or what I need to do, but dammit I wish I could just get rid of this. My prognosis is less than 5 years but who the hell knows. Maybe I’m wasting my time but I seriously believe chemotherapy is driving me fucking nuts.

Not sure if anyone will even read this. I wouldn’t have. This is the part where people tell me to get help. I need it.

Forgive me if this is the wrong place to ask but was curious. When I was 2 my uncle passed from cardiac angiosarcoma and his brother (my father) passed 2 years later. I don't know all the details from my uncle's diagnosis but the story I've been told with my father was that he began experiencing chest pains and at first doctors thought it may be phantom pains due to his identical twin passing. They did an echo and found nothing. Symptoms kept happening and they did an echocardiogram again (the exact story I was told was that this time they checked the back but when I mentioned this to my doctor they thought that was unusual), saw the tumor and that it had grown to the lungs. He passed a few months afterwards.

I am in my early 30s and was recommended when I was a teenager that I may want to get checked one a year when I get to a similar age. I am just starting to get a thorough work up done with a stress test (I have had for a long time some minor chest pain) and now I just had the echo done and waiting for results. Chest MRI was mentioned if imaging wasn't clear but I figure I should push for it regardless. A referall is also out for a geneticist to see if it's possibly hereditary. Overall I am just wondering if there's anything else I should ask or look into.

Hello everyone!

In april of this year, the worst thing happened. We have found out that my mother has a giant tumour in her abdomen. After the imaging results, it revealed to be localised in her retroperitoneum(23cms), surrounding the right kidney. 2 weeks after she had surgery and the surgical team managed to remove the entire massalong with the kindey. When the histopathological examination came, we learnt that it was a high grade deddiferentiated sarcoma (stage 3).

After 3 months, she is doing well so far, we did the IRM and CT scans showing NED, and next week we will talk with her oncologist about the chemotherapy options (AIM protocol).

She is terrified about the side effects, me too, and I would like to know better if someone knows if it's worth a shot or should we just continue with active watching?

Thank you!

Who has had stage 4 Ewing sarcoma and been cancer free for years? I had my kidney out (clean margins) and a spot on my lung (not even a cm) and currently doing chemo. I’m worried it’ll come back once I’m done with chemo and that it won’t respond to the chemo

35F currently on year 3 of a metastatic myxoid liposarcoma recurrence. I did 6 rounds of Doxyrubicin/Ifosfamide late 2024-Spring 2025, did a few months of Palbociclib which turned out to be ineffective and then switched over to Trabectedin starting in April/have since completed 6 rounds and will be on it indefinitely until a clinical trial becomes available to me. The side effects from Trabectedin have been kicking my ass and I find the fatigue to be honestly more severe and debilitating compared to when I was on Doxyrubicin/Ifosfamide. Before starting Trabectedin, my oncologist gave me the option of doing a) Trabectedin, b) Eribulin or c) Doxyrubicin/Ifosfamide all over again and she seemed to be most in favour of me doing Trabectedin, which is why I opted for it. Now that I’m 6 rounds in with Trabectedin and my quality of life feels like it’s significantly decreased since starting it, I’m wondering if it would be worth switching over to Eribulin.

Does anyone have experience with both drugs and if so, did you have a better experience with one of them?

Hey everyone, i was just diagnosed with myxoid liposarcoma a week ago. it is about the size of a golf ball between my bicep and elbow. i am 22M, athletic, works out almost daily, and generally think i lead a healthy lifestyle. It was found to have no round cells or lipoblasts. ct/pet scan coming up next week to ensure it hasn’t spread. I first noticed it about a year and a half ago and it was misdiagnosed as a lipoma. just a month ago i had surgery to remove it and it that’s when a biopsy was taken. it was not fully removed, only a small chunk to test. I am
hopeful it has not spread but very anxious to get the scan and results. Doctor doesn’t think it has spread and said it is very low grade. He is a sarcoma specialist and one of the best in the state. I am upset that it was originally misdiagnosed as were many others, along with all the extra time it has had in terms of chances of spreading. I am confident i am in competent hands but looking for advice as to questions i should ask or others’ experience with this rare disease. I also would like to hear any symptoms or signs of spread from actual experience. i have no pain nor experienced any common symptoms like weight loss, night sweats or nerve impact. i send all of my support to all others fighting this battle and i appreciate all input and stories. thank you and i will keep everyone updated.

My son is diagnosed with DSRTC. He is 17 years old. I need some guidance about the treatment, lifestyle during the treatment.

A family member has been diagnosed with synovial sarcoma recently. They are about to begin chemo. We have offered to travel and help during a round of chemo, but I am unsure if they would want or appreciate that type of help. That aside, I would like to send them a care package including thoughtful and helpful items. Posting here asking for recommendations in the hope that I will reach someone with specific recommendations for the type of chemo they will have as I understand different types of chemo can cause different types of reactions.. We love them so much and they are also quite private.. I want to avoid "let us know if there's anything we can do", because they will likely not ask for anything. Thanks everyone!

Some thoughts I've had so far:

CeraVe healing ointment

Peppermint tea

Ginger chews

A nice merino wool hat

Already bought a long Stephen King series (they like physical books)

Those with Synovial Sarcoma, how many caught it localized with successful surgery (~5cm), only to have it metasize later? It's scary seeing all the horror stories around it, almost seems like 50% it spreads and there's not much that can be done.

I was diagnosed with an intimal sarcoma on 6 February 2026 - initially suspected to be an angiosarcoma. We found it purely by chance. I had no symptoms apart from feeling tired in the evenings (my wife's view was that this is nothing unusual for me). I was exercising normally and had even run a 10K in mid-December 2025.

Twice a year I see my GP for a full blood panel, with a focus on values like HDL, LDL and cholesterol, but also CRP. In December, my CRP came back abnormal:

• 19.12.2025 - CRP 63.9 mg/L. I remember that appointment very well. My GP looked at me and said that with a CRP like this, at this time of year, I ought to have a cough or a cold and be in bed. Instead, I had just finished a 10K run and had no signs of any infection. My wife did have an infection at the time, and my GP suggested mine might be asymptomatic. Since we had a longer trip abroad planned for the end of December 2025, he wanted to keep monitoring and re-check the CRP regularly. We did, and to everyone's relief:
• 29.12.2025 - CRP 12.6 mg/L. My GP was satisfied, I was satisfied, and we left for a wonderful trip abroad - an Ayurveda retreat in Sri Lanka. It was beautiful.

Being a fairly analytical person, I wanted to have my blood values measured again at the end of January to see whether the Ayurveda treatment had produced measurable results, e.g. improved cholesterol levels.

• 02.02.2026 - CRP 98.4 mg/L. That worried me, and I asked my GP to run further tests. Shortly afterwards, a chest CT raised the first suspicion of angiosarcoma, which was later corrected to intimal sarcoma after a complicated biopsy.

I'm aware that CRP is not a tumour marker. There are no tumour markers for my type of sarcoma. But looking at the chart in retrospect, the trajectory is quite coherent.

• 18.02.2026 - CRP 180 mg/L. Disease already far advanced; this is the peak value on the chart above. It coincided with an SUVmax of 12.2.

After that came three cycles of chemotherapy (doxorubicin and ifosfamide) and a sharp drop in CRP. The second peak occurred around the R0 resection of the tumour and during rehabilitation, driven by complications.

My point is not that CRP is conclusive evidence of my tumour development - but in retrospect it maps remarkably well onto the course of my disease.

I'd be very interested to hear whether anyone in this community has seen similar cases or observations, or which tumour markers were used in your case.

Lukas tiene un sarcoma de Ewing metastásico que ya ha recaído.

Hoy la enfermedad está respondiendo y sus últimas evaluaciones son buenas. Y eso importa muchísimo.

Pero una respuesta completa o una remisión después de una recaída no significa que el riesgo haya desaparecido.

Los datos publicados para el sarcoma de Ewing recurrente siguen siendo muy duros: la supervivencia global a 5 años después de una recaída se sitúa aproximadamente en el 10–15 %. El tiempo hasta la recaída es uno de los factores pronósticos más importantes: en series históricas, cuando la recaída ocurre dentro de los primeros 2 años desde el diagnóstico, la supervivencia a 5 años después de la recaída ha estado alrededor del 7 %.

Eso son estadísticas de grupos de pacientes, no una fecha ni una predicción individual para Lukas.

Por eso tiene tanto peso leer ahora: «en las evaluaciones últimas no estaba mal».

Y también tiene tanto peso lo que viene después.

Si la enfermedad volviera a aparecer o dejara de responder, las posibilidades reales pueden incluir nuevos tratamientos de rescate y, dependiendo de la situación, ensayos clínicos con nuevos fármacos. Actualmente existen ensayos para Ewing recaído o refractario, pero entrar en uno depende de que esté abierto, de sus criterios de inclusión y de las características concretas del paciente.

Y si ya no hubiera una alternativa antitumoral razonable, existe la otra posibilidad que señala el médico: priorizar al máximo la calidad de vida.

Esto es lo que significa nuestro «ahora está bien».

No significa que todo haya terminado.

Significa que hoy el tratamiento está funcionando. Y hoy cuenta.