u/BreakfastGlass5587

I posted 2 months ago that my NET was removed during a colonoscopy, ki 2, 1mm size, resected to r1 and that I was awaiting pet scan and treatment plan

Pet scan shows tumor bed is clear but what was showing for 3 years on other imaging for endometriosis as either a parasitic fibroid or endometriosis nodule doctors now believe to be an avid lymph node of the mesorectal or perirectal fat anatomically consistent with the tumor bed location.

I am seeing Rutgers and MSK GI surg onc doctors for reference.

MSK said my choices are: monitor, biopsy, or insist on removal. He favors monitoring.

Rutgers initially said laparoscopic removal which I could have combined with an endometriosis procedure, that a biopsy might not find it, but now are saying to monitor and not to get it removed, but that I could still have my endometriosis surgery as planned.

Both say monitor tumor bed that r0 resection is not necessary.

I have experienced carcinoid symptoms for years but they don’t know if the tumor was causing it or if the lymph node will cause it.

I’m just at a loss. I’ve had many surgeries and DO NOT want another but with endometriosis we often have no choice but to try and address our pain, I’m also an RA patient on 2 immunosuppressive meds.

Is leaving this metastasis really a good idea? Both doctors say that it’s not worth removing and that meds aren’t the right choice for me.

I want to move forward with my life and though they say it may never grow I don’t want to suddenly need a dramatic surgery because we didn’t monitor close enough.

Help!

I’ve posted here before about being turned down by a top surgeon who told me to give up on trying to get a surgery to treat my persistent Endo pain and “not to let anyone operate on me further”

My last two MRIs showed a nodule of 1 cm on the perirectal fat, one called it a parasitic fibroid, and the other called it an endometriosis nodule. The specialist told me not to worry about it and declined to operate on me.

I sought a second opinion from a colorectal surgeon who sent me for a colonoscopy. Well, we’re still not sure what that initial nodule is but the gastro found a neuroendocrine tumor of 1 cm in the rectum. I’m not sure what my treatment plan will be but it will involve another attempt at removal as the margins weren’t clear.

So in my case, butt lightning was actually also a tumor and not just Endo.

Fucking hell.

It feels surreal to post here, I’ve been dealing with endometriosis since I was 14 (39F) and investigating a potential endo nodule in the perirectal fat led me to a colonoscopy

I’ve had years of sweats, headaches, diarrhea, chest pain, vomiting, all chalked up to endo and MCAS (plus really bad joint pain from rheumatoid arthritis)

One 4mm tubular adenoma was excised

So was one 14mm sample which ended up being a carcinoid tumor of the rectum, 1cm cgA - and ki67 2%

Margins were not clear.

Original Perirectal nodule was not touched, biopsied or viewed in the G.I. tract

My doctors (gastro) plan is:
Repeat colonoscopy in 2 mos to excise more
5-HIAA urine test to investigate carcinoid syndrome
Genetic testing as to why I had 2 diff abnormalities

I asked for a PET scan (dotatate ofc thanks to reading your posts) but was told wait for urine results and colonoscopy anyway, low risk of malignancy

I requested appts at MSK and Rutgers New Brunswick (NCI center with a NETs research wing) but will they take me? Do I follow her plan or seek additional scans?

“The internet” says my joint pain and MCAS could all be caused by these tumors…

Help! Nets specialist or?