34/f and 3 months ago had a c-section, within 24 hours of the operation a large lump appeared on my neck. The OBGYN thought it was from stress because my head was turned to the left the entire c-section dry heaving. At my 6 week appointment it didn’t go away so they sent me to general surgery. General surgery did a CT which lead to a biopsy with “two passes”. The biopsy came back inconclusive even when they sent it out to a bigger hospital. The general surgeon is sending me to a general oncologist who did a fellowship at MSK. The general surgeon told me he thinks I have Desmoid tumor…I can’t see the oncologist until mid September which is kinda driving me nuts. I do plan on asking for a referral to a sarcoma hospital I live on the East Coast so I have a few over here. Just wondering if anyone has dealt with this type of tumor? Or has anyone had their biopsy come back inconclusive? I will say I am annoyed it was inconclusive. When the doctor was doing the biopsy he did mentioned I have abnormal spindle cells and also an abnormal cluster of cells. They were taking the samples and looking at them under the microscope with me laying on the CT table. So I was confused on how they couldn’t get an answer. The doctor even went back in and took more because he said it would have to be sent out for more testing. The soft mass tumor is sitting above my first rib and is sticking out my neck.
When I had my tumor biopsied the pathology teams also had a hard time deciding exactly what type of cancer to call it. Categorizing the pathology is not necessarily straightforward. If they do think you have sarcoma, I recommend skipping the guy who did a fellowship and calling a major cancer center with a dedicated sarcoma team directly. Have them request your pathology slides so that they can redo the pathology themselves.
Pick a hospital on this list of recommended sarcoma centers. I did not need a referral from a doctor to get appointments at University of Michigan and Memorial Sloan Kettering. If you can get a copy of whatever pathology report was generated to forward to the intake teams, that will help expedite your intake.
Do not let any more general surgeons mess around with the tumor. Disturbing it more is probably risky. Not only do you need a doctor experienced in handling sarcoma, but you also need the benefit of a support staff with experience as well. The nurses, pathologists, etc. are also critical to your care outcomes.
Thank you so much for responding, I have been looking up sarcoma hospitals and I will send a message out to MSK and see what happens. I requested to see the biopsy report as it’s not uploaded to my chart but still waiting.
Have they done a pan TRK test? NTRK spindle cell sarcomas have that spindle cell pattern plus others which makes it hard to diagnose. NTRK tumors are more common in younger folks like me and you (I’m 26).
I had (six months NED) stage 1b NTRK-rearranged spindle cell sarcoma of the endocervix. That’s what my local hospital calls it, but MD Anderson refers to it as a malignant uterine mesenchymal neoplasm with an NTRK rearrangement. They are VERY rare, but from all the studies I’ve read out there, they favor younger females (pre-menopausal).
I’ve attached one of my pathology reports in case it helps comparing it to your own. PanTRK detects the presence of the NTRK gene rearrangement in a cancer if it’s there. If that’s positive, then they proceed with a FISH analysis to see which NTRK gene it is, and then even more detailed pathology after that with a gene panel. Your story of confusing pathology with spindle cells plus other odd formations reminded me of my own pathology for my cancer. Hard to say if it’s NTRK for you, but I see the similarity.
Edit: A big clue that it could NTRK is if other routine stains )like desmin, etc) are negative like it is in my shared photo.
Thank you so much! One of my issues is I haven’t seen the pathology report! It was never uploaded to my chart so I’m really unsure what it even says, other than the doctor saying it was inconclusive. Congratulations on NED that’s amazing.
Hopefully they get those reports to you. I’d hound them bc it’s your right as a patient to have those. And thank you! I wish you the best on your new journey. Hang in there. The waiting is the worst part but it doesn’t last forever. Please let me know if you have any questions about NTRK tumors or about MD Anderson as a second opinion. Also, look into the sarcoma alliance’s second opinion grant. They will give you $1k to help cover the costs of second opinions which rare cancers undoubtedly need.
Thank you so much, I’ve seen the sarcoma alliance grant a few times mentioned here so I will check it out. I plan on calling again on Friday. I’ve called and emailed and even emailed the like “records” department of the hospital but I haven’t gotten any call back. I also plan on seeing if I can get an appointment at MSK in the upcoming weeks. Hopefully they will be able to get their hands on my records and maybe give me a little more insight. I really appreciate you answering and chatting with me.
Can I ask what steps you needed to take to become NED? I read your other post about giving birth to your cancer that must of have traumatic to say the least!
Well, NTRK tumors are bizarre. They don’t respond well to chemo or radiation, so surgery is the first line of defense. A few years ago, targeted therapy called NTRK inhibitors came out which are like miracle drugs for recurrent or metastatic NTRK cancers, but I haven’t needed that. I was diagnosed at stage 1b, but my tumor was 16cm total. I was misdiagnosed for years bc the tumor hid very well on imaging, and I was diagnosed after I gave birth to 8cm of it on my own. I went into labor one day (I’ve never been pregnant before) and five days later I gave birth to the dying part of the tumor. I had a total hysterectomy (cervix, uterus, tubes) but left behind my ovaries because of my age. My surgery achieved clean margins and pathology showed no lymphovascular invasion in any section of my tumor, so MD Anderson suggested a watch and wait approach. I get CT scans every three months to see if it’s back, and it hasn’t come back yet (and hopefully never) after six months. But it was extremely traumatic giving birth to a sizable sarcoma! I’m in therapy to process things but me and my 🐱 have been through the ringer lmao
Omfggggg that sounds wicked intense and I have given birth before. Amazing step being in therapy I also see a therapist regularly. I took a break and will be going back next month. I was just reading about that target therapy, if the cancer comes back will that be an option for you? I hope it doesn’t! I’ve read some post about people being 20 NED.
Yep, I have a back up plan of the inhibitors. Hopefully they’re never needed, and MDA felt a cursory round of them was overtreatment, so hopefully I was cured from surgery alone. I had the cancer for approximately ten years and my uterus easily trapped it like a fetus so it appears to have been a stupid cancer regardless lol. But I’m taking my experience and sharing it with others to inspire them. I should be dead having a sarcoma for ten years that had aggressive features, but I’m not, and besides for some pelvic issues caused from the tumor pressure, I’m relatively normal now. Just gotta deal with the demon if scanxiety every now and then. But I’m interested to know what your diagnosis ends up being. Feel free to message me at any time if you just need someone to talk to. Being a young woman with sarcoma blows but it’s easier with a community who can relate
Of course, I don’t mind chatting with a fellow sarchomie (as sucky as it is to be one). If your health insurance has access to care coordinators, I would tap into that as well. They can negotiate the healthcare system for you, including receiving records.
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u/Logical_Sugar9118 11d ago
Same!! 24 hours after c section, two biopsies inconclusive to then being a super rare version with a protein gene fusion message me if you’d like