In a nutshell, I have a soft tissue sarcoma in my peritoneum, its inside the mesentery but outside of the bowels. Its a very rare cancer, like 1 in a million. I had two surgeries in NYU, in 2019 and in 2022. After the second surgery, more tumors showed up.
Here’s the history:
October 2018: I started having some difficulties with urinating, the pressure got weak, I was going to the bathroom in every 30-60 mins to pee just a little bit, dripping each time.
So I went to my doctor, he ran the blood & urine tests, all looked fine, so he ordered a sonogram / ultrasound. The radiologist discovered there was a big mass in my stomach, a huge tumor, as big as a grapefruit, around 10 cm stuck to my intestine, close to my arteries. After a CT scan and a biopsy, it was clear that I needed a surgery.
1- March 2019: I got an operation at NYU. The operation was long (6-7 hours) but successful, the big (10cm x 9cm) mass was removed, he also cut off 12″ of my intestine as well. I stayed in the hospital for a week, it was a difficult stay, I was in pain, but I finally got home after a week and started the recovery process at home.
I had a difficult recovery, since this was my first heavy surgery I did not know what to expect, but could not eat well for months, mostly soup diet, eating hard food was hurting my stomach, I also had a blood cloth problem due to the surgery, it very close to my liver, which was luckily discovered 3 weeks after the surgery, so I was prescribed to take x’eralto blood thinning medication for about 6 months. 6 month after the surgery I lost 15-20 pounds. Pathology report said it was a; Low-grade fibromyxoid sarcoma, which is a super rare soft tissue sarcoma; it’s a type of cancer, not many known cases available, it happens like in 1 in 1,000,000 or fewer.
I kept visiting my cancer doctor at NYU, went all my checkups, and kept going to CT scans in every 3 months, then 4 months, then 6 months, etc. My urinating problem was not solved but everything else was good until…
3 years later; during a checkup CT scan, they found another tumor which was grown to 1,5 x 1.7 cm, it was very small but my surgeon recommended that he should remove it before it gets bigger. My cancer doctor agreed.
2- March 2022: I was on the same operation table at NYU hospital with the same surgeon. It was a much faster surgery, took only 2 hours. He took the small tumor and cleaned up a little bit more from the previous residues etc. I was in the recovery room only overnight, everything was ok except my heart was racing 140 to 150 for the whole night, the next morning my heart beat went down to 90s and they let me go. I was home, feeling much better than before. This was easier, I was able to recover within weeks and got back to my old self.
3- August 2022: 6 months after the second surgery, during the first follow up CT scan, the radiologist discovered new tumors growing in different parts of my mesentery wall and small bowels, total 6. My surgeon said, it would be very risky to do surgery at this time, the tumors are still small and all over the place in my stomach, it would be very difficult to find and remove all of them. He wanted to wait for 6 months to 1 year and want to remove the ones that get bigger perhaps next year.
4 – February 2023: The tumors grown more, two of them doubled in size, they said it was strange, because these kind of tumors normally grow very slow. My surgeon is still hesitant to do the third surgery, he said first of all, because the tumors were all over the place, he won’t be able to remove it all of them and if he does, since the tumors coming back, he doesn’t want to repeat surgery every year. He recommended to do a biopsy and advised me to search for other options besides surgery. He said NYU protocol allows them to do surgery only, but he was not sure if the third surgery is a good idea at this time, since the tumors keep coming back.
5 – March 2023: We are searching and getting second opinions from different hospitals. We went to Mt. Sinai, they recommended HIPEC, which is a surgery with heated chemo, a difficult procedure. We also tried to see a doctor at MSK but could not speak to any doctor since our insurance does not cover them and they were very cocky with no transparency. We will try to get an appointment from other cancer hospitals.
What am I doing besides researching;
1 – I started the intermittent fasting for 16 to 20 hrs a day. In mid August 2022, I was 193-197 lbs. in March 2023 I am around 170-174 lbs. This Ramadan (March-April 2023) I am doing normal fasting.
2- I stopped alcohol, cigar altogether.
3 – I am drinking herbal teas, ginger, ginseng, turmeric, licorice root, etc..
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RECENT MEDICAL REPORTS:
3/20/2023
PATHOLOGY
A. Mass, abdominal, biopsy
– Consistent with recurrent low-grade fibromyxoid sarcoma
Comments: low to moderately cellular elongated spindle cells with minimal atypia, prominent wiry vessels, and marked myxoid stromal changes present in the background. Morphologic features similar to previous cases for this patient (see TS22-05292). Sampled tissue is negative for any higher grade morphologic features.
EMA: Light positive
Sox10: Negative
Ki-67: 3%
Syed T. Hoda, M.D.
Pathologist
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3/3/2023
CT ABDOMEN PELVIS WITH IV CONTRAST
Clinical Indication: Low-grade fibromyxoid sarcoma, status post robotic lysis of adhesions and excision of right lower abdominal wall mass on 3/3/2022
Technique: Multidetector-row CT images of the abdomen and pelvis were obtained from the xiphoid through the symphysis pubis. Oral and intravenous contrast were administered. Coronal and sagittal reconstructions were performed.
Contrast: 116 cc IOPAMIDOL 300 MG IODINE/ML (61 %) INTRAVENOUS SOLUTION non-ionic intravenous contrast.
Comparison: CT abdomen and pelvis 8/22/2022, CT abdomen and pelvis 1/9/2019
Findings:
01. LIVER: Normal morphology. No focal lesion.
02. SPLEEN: Normal.
03. PANCREAS: Normal.
04. GALLBLADDER/BILIARY TREE: No biliary duct dilatation. Normal gallbladder.
05. ADRENALS: Normal.
06. KIDNEYS: Symmetric enhancement. No hydronephrosis, renal stone, or soft tissue attenuation mass.
07. LYMPHADENOPATHY/RETROPERITONEUM: No lymphadenopathy.
08. BOWEL: No bowel obstruction or inflammation.
09. PELVIC VISCERA: The prostate and bladder are unremarkable.
10. PELVIC LYMPH NODES: No lymphadenopathy.
11. VASCULATURE: Normal caliber abdominal aorta. Attenuated SMV caliber, with prominent mesenteric venous vasculature collaterals, unchanged.
12. PERITONEUM/ABDOMINAL WALL: Mesenteric surgical clips from prior resection. Previously referenced mesenteric lesions, as follows:
-4.1 x 3.8 cm right paramidline small bowel mesenteric nodule at the level of the umbilicus (series 3 image 66), previously 1.7 x 1.4 cm
-2.5 x 2.2 cm left mid small bowel mesenteric nodule (series 3 image 50), previously 1.7 x 1.6 cm
-2.0 x 2.0 cm right mid abdominal small bowel mesenteric nodule (series 3 image 46), previously 0.8 x 0.8 cm
-1.3 x 1.1 cm right mid abdominal small bowel mesenteric nodule (series 3 image 54), previously 0.8 x 0.8 cm
-2.4 x 1.6 cm left anterolateral abdominal wall soft tissue nodule (series 3 image 50)
-New 1.1 0.9 cm left mid abdominal small bowel mesenteric nodule (series 3 image 46)
-0.7 x 0.6 cm hypodense nodule superior to the urinary bladder dome, with a central fat attenuation and interval development of peripheral calcification (series 4 image 38), previously 1.0 x 0.9 cm, favored to represent evolving fat necrosis.
13. SKELETAL: No aggressive lesion.
14. LUNG BASES: Please see the separately dictated report of dedicated chest CT performed the same day.
Electronic Signature: I personally reviewed the images and agree with this report. Final Report: Dictated by and Signed by Attending Luke Ginocchio 2/28/2023 2:22 PM
IMPRESSION:
New and enlarging small bowel mesenteric and left anterolateral abdominal wall soft tissue nodules, as described.
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03/03/2022
PATHOLOGY
A. Mass, recurrent abdominal tumour, resection
– Recurrent Low-grade fibromyxoid sarcoma
Comments A: Two sides of the specimen are inked; both are involved by tumour.
B. Mass, abdominal wall, resection
– Recurrent Low-grade Fibromyxoid sarcoma (see note)
Note B: This is an infiltrative, low-grade malignancy which is growing with tumour projections through the surrounding soft tissue and muscle. Nodular pattern of growth is present centrally with poorly defined growth at the periphery. At least 2 cm (grossly) for the dominant nodule, the tumour is also present at the lateral edges of the specimen along with skeletal muscle as well as positive at the black-inked deep margin.
Please also refer to prior biopsies/resections (TS19-14277) which document a Muc4 positive staining pattern, which is consistent with the morphologic features present here; characteristic of Low-Grade Fibromyxoid Sarcoma. Negative for higher grade features. Some adipose tissue is present trapped within the tumour.
08/02/2022
CT ABDOMEN PELVIS WITH IV CONTRAST
12. PERITONEUM/ABDOMINAL WALL:
-Surgical clips in the mesentery.
-Interval resection of the two previously noted anterior abdominal soft tissue nodules.
-New 1.7 x 1.4 x 1.6 cm low-density (as was the primary lesion) nodule within the small bowel mesentery at the level of the umbilicus, slightly to the right of midline, compatible with a new site of disease (series 12 image 26, series 11 image 66).
-New 1.7 x 1.6 x 1.4 cm low-density nodule within the left mid small bowel mesentery (series 11 image 58, series 12 image 43).
-New rounded low-density lesions within the small bowel mesentery in the right mid-abdomen (series 12 image 38), measuring 0.8 and 0.7 cm respectively.
-Increased conspicuity of a 1 x 0.9 cm hyperdense nodule just superior to the dome of the urinary bladder (series 12 image 40), previously measuring 0.7 x 0.7 cm. This nodule demonstrates a focus of central fat attenuation, and was more fat attenuating prior examination, is favored to represent evolution of fat necrosis, rather than an additional deposit.
Electronic Signature: I personally reviewed the images and agree with this report. Final Report: Dictated by and Signed by Attending Kira Melamud MD 8/22/2022 12:58 PM
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Serdar Acar 