Desmoid Tumor

[u/Abruscini]

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.

[u/sentientdumpsterbaby]

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.

[u/Abruscini → u/sentientdumpsterbaby]

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.

[u/Abruscini → u/Abruscini]

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!

[u/sentientdumpsterbaby → u/Abruscini]

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

[u/Abruscini → u/sentientdumpsterbaby]

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.

[u/sentientdumpsterbaby → u/Abruscini]

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

[u/Abruscini → u/sentientdumpsterbaby]

I definitely will, when I find out I’ll be in touch. Thank you so much again.