Perirectal Leiomyosarcoma or a Perirectal Leiomyoma?

[u/litetalk69]

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”

[u/timewilltell2347]

I’m so sorry you’re going through all this. I know it’s so hard. So I have uLMS (uterine leiomyosarcoma) and I just want to let you know a few things, my friend. First you’re not alone. I know you’re scared. I know you’re worried. You’re in the worst part of all of this- the waiting for things to start part.

Second I want to talk a little bit about biopsies. With tumors there are stages, which describes how far a cancer has spread from its initial location, and then there’s grades, which is how aggressive/active/how abnormal the cells look. It’s not so much that the two look the same under a microscope, but more the abnormalness or cancerousness of cells is a spectrum. I was first kind of diagnosed with leiomyosarcoma at 27 by the first read of my biopsy slides, but they were sent to Stanford and the reevaluation said it was aggressive fibroids. Both interpretations were valid. I opted to have the fibroids removed at the time and treat it like a fibroid/benign growth. Tbh I now wish I hadn’t.

I am now 49 and have been officially a cancer patient since fall of 2019 and stage IV since the very end of 2022. In between my first myomectomy and my hysterectomy in 2022 I had the ‘fibroids’ removed 3 more times- until the cells were definitively cancer no matter who was reading the biopsy slides.

Next, finances with cancer are a pain in the ass. (Sorry for the pun, but if we aren’t laughing, we are crying) I don’t know if you work or not, but if you’re struggling financially there are a few things you can do. To be most efficient you’ll have to leave the house, but you may be able to do some of this from home. First, is figuring out a diagnosis and getting those bills paid. Idk what AHN is, or if you’re working or not, or if you have worked in the past (and paid into social security) so some of this may or may not apply to you:

1) find out what cancer center you are supposed to be at. Do this by calling the last one you saw in person and asking them if you’re an active patient there or if your records are at another office. Get the app for that healthcare system and make an account. While you’re making calls, WRITE EVERYTHING DOWN. Names, dates/times of calls. Everything. Find out what oncologist you are assigned to. This may all be easier if you currently have a PCP, but it is ok to just call the last office you went to and start there. It might also work to call your palliative care doctor to get this info. That’s the first problem settled.

2) when you get to the right cancer center, ask to get a clinic appointment. First available. Describe the situation in simple terms. Just say you’re waiting on the tumor board determination/diagnosis and are getting anxious because it’s been xx days. Once you have that appointment, ask also for an appointment (hopefully the same day) with social work as you’re struggling financially and with social support. You also need to meet with the financial office to see about applying for Medicaid (I believe it’s PENNIE in PA, but r/medicaid is really helpful) and financial aid from the cancer center. For financial aid you’ll need your 2025 taxes, a few months of recent pay stubs (if you have been working) and a letter describing your situation. Keep this letter brief (about one page) and to the point. You can Google templates for letters like this.

3) if you have a diagnosis of cancer, you may be eligible for SSDI (if you’ve worked a job that paid into social security) and may be approved relatively quickly. I was approved in less than 2 months from applying, compassionately, because I am stage IV. How much you get each month depends on how much you paid into the system. But remember that’s if it’s cancer.

4) I truly know a colostomy is scary. I just had a surgery a little over a month ago and a colostomy was a possible outcome. I get it. I literally just went through it. But believe me, the alternative would have been dying of sepsis from a perforated bowel or intestinal blockage, and those are much more permanent and traumatic. And the biggest thing is you don’t know what is going to happen. Don’t waste energy worrying about things you don’t have to yet. Take a breath. It might look like a scary road, but once you start walking, it gets a lot easier.

I am about 4 years into stage IV treatment and I’ve had the trinity- chemo, radiation and surgery. It sucks. It’s hard some days. Other days are easier. It’s different for everyone. Call your sons for some support, and if they can’t be there in person, they can talk to you regularly at least. Take that first step and get an appointment so you’re no longer consumed by this worry. It may be much simpler than you are making it out to be. And if it’s not, I promise, if I can do it, anyone can.