Initial imaging and tests; what to expect after initial NETs diagnosis

Posted by prairiezebra @prairiezebra, Jul 21 12:21am

Context:

I've known about my NETs diagnosis for less than 2 weeks. A very small NET was discovered during a routine colon cancer screening colonoscopy; my first colonoscopy ever! The doctor that performed the colonoscopy found two small polyps; one of which turned out to be a NET. He consulted with our local oncologist (who sees patients at our community medical center in rural Minnesota once per week). The oncologist said I could either wait 6 months and do another colonoscopy to get the remaining margins (and, I guess, see what growth there might be if any) OR I could have a procedure sooner to have the margins removed.

Rectal colon polyp, biopsy -
Well differentiated neuroendocrine tumor, WHO grade 1 (G1).
Greatest contiguous measurement at least 2 mm.
Margins involved.
Mitoses < 2 per 2 mm2 and Ki67 index < 3%.
Immunohistochemical staining (Synaptophysin, Chromogranin A, Ki-67) performed. Tumor is positive for synaptophysin. Chromogranin stains negatively. Occasional cells stain positive for Ki67.

I am planning to have a procedure to remove the margins next week, to meet with the oncologist the following week, and have an initial consultation at Mayo in MN in early September (unless an earlier appointment becomes available).

I had been having a variety of vague symptoms that I was guessing were perimenopause (I'm 47) or stress (frequent loose stool). I would occasionally have blood in my stool, but I thought maybe just hemorrhoids or something. My menstrual cycle is a little off, but not too bad -- some other changes I noticed that I thought were perimenopause (occasional hot flashes). My vision has been worse, and I've had more headaches and a couple of aural migraines (new to me). I also had a cold or some other virus last summer that I just couldn't shake (was pretty severe and lasted about a month, I still feel like I get winded more easily than I used to). I masked all year at work because I seemed to get COVID once a semester when I didn't, and that cold/virus from the summer really wiped me out. I'm now wondering if some of my symptoms could be NETs. The tumor was so small, I don't know if it would be likely to cause symptoms in its presence or relieve symptoms with its absence in any meaningful or noticeable way.

My initial appointment includes some bloodwork and CT Chest/Abdomen/Pelvis Multi Exam. I feel concerned/scared that there may be more NETs elsewhere, and I'm curious if it's normal to not include a PET scan. I don't know if my other symptoms would indicate call for a PET scan, or what other things might suggest that a PET scan would be useful or not useful. I wonder if I didn't say enough about those other symptoms in the lead up to the appointment. I feel like I'm being a little bit of a hypochondriac or attributing *any* symptoms to NETs that *might possibly* be from NETs (but might certainly just be normal for getting a bit older, gaining a little weight, being under stress, etc.)

In addition, I was off my thyroid medicine for 3 weeks to check if my body still needed it... and turns out it definitely does. I've been on that medication for hypothyroidism for 20 years, but a few years ago it was suggested that maybe my body has started doing some thyroid stuff on its own again... it was never a convenient time to try going off meds until this summer when I just happened to have a gap between most recent refill and time for annual physical (well, slightly delayed... hence the gap in refill).

That is a long message.

Question/request:

I'm wondering if people would be willing to share what kinds of things happened at their first appointments after diagnosis for anyone whose NETs journey started with the incidental finding of a tumor in some kind of routine screening such as a colonoscopy. My tumor was just so small... but I'm still feeling very afraid that it might be a metastasis *from* somewhere else even if this tumor itself was not looking particularly aggressive. I don't want to miss anything in this initial set of scans/tests. It seems like this could be the best case scenario of a tiny NET that can be removed and then we just monitor. Have others had that experience? Or, have others thought they *might* have that experience based on initial findings, but then some particular test caught some sneaky NETs elsewhere? Basically, if they are there, I just want to know. Did anyone *not* initially have a PET scan, but then bloodwork or CT scans led to a later PET scan?

I feel a lot better knowing the appointment is on the horizon with whatever tests the Mayo team thought made sense. I don't want to miss something because I didn't share enough about my many little seemingly disparate symptoms.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Profile picture for ineedawhale @ineedawhale

Hi, I'm new here. I found out I had NETs incidentally as well. During a CT for kidney stones (in February this year), a neoplasm was found on the right middle lung lobe. I was sent for a regular PET scan which showed one on the left upper lobe, a possible lymph node nodule and a thyroid nodule. They biopsied all (4 separate procedures). The 2 lung tumors are NETs. The lymph node and thyroid are benign. Once I got the positive NETs results I was sent for a Dotatate PET. A month later, I was sent back for a CT. For me, the CT showed a much clearer picture (plus 3 more previously unseen) no false light ups than the PET scans did. I was told they will do all follow-ups with CT, fine by me.

I am set to have a right middle lobectomy the 31st. The left upper lobe will get radiation. Both of those tumors are just over 1 cm. The other 3 are 5 mm and less so will just be watched. I don't have any of the symptoms of NETs. Unless fatigue counts.

Every time I go in, they reassure me that this is a very non-aggressive, slow growing, rarely metastasizes cancer. So I haven't been too worried. Hopefully they'll give you some info that helps you relax.

Jump to this post

Hello @ineedawhale and welcome to the NETs support group on Mayo Connect. On Connect, we have several discussions on lung NETs and I would encourage you to post your questions and concerns in one of those groups. Here is a link to all of the posts that discuss lung NETs.
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Lung+NETs#discussion-listview
In these groups, you will meet several members who have lung NETs, such as @californiazebra and many others.

As you said, this was an incidental diagnosis. I'm wondering if you were having any breathing issues or other upper respiratory symptoms.

REPLY
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @ineedawhale and welcome to the NETs support group on Mayo Connect. On Connect, we have several discussions on lung NETs and I would encourage you to post your questions and concerns in one of those groups. Here is a link to all of the posts that discuss lung NETs.
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Lung+NETs#discussion-listview
In these groups, you will meet several members who have lung NETs, such as @californiazebra and many others.

As you said, this was an incidental diagnosis. I'm wondering if you were having any breathing issues or other upper respiratory symptoms.

Jump to this post

Oh nice! I didn't realize there were individual groups, that's super helpful. Thank you!

No, I wasn't having breathing issues at all. I'd have never known without the CT for kidney stones. My lung function tests are all (still) at 100. But, I have pain that comes and goes. Some is dull, some is sharp. I am currently having a squeezing sensation on the outer left side and a dull ache in the upper left side as well. None of it is terrible pain, it's just annoying and it worries me that either things are spreading or maybe the tumor is just sitting on a nerve.

REPLY
Profile picture for ineedawhale @ineedawhale

Oh nice! I didn't realize there were individual groups, that's super helpful. Thank you!

No, I wasn't having breathing issues at all. I'd have never known without the CT for kidney stones. My lung function tests are all (still) at 100. But, I have pain that comes and goes. Some is dull, some is sharp. I am currently having a squeezing sensation on the outer left side and a dull ache in the upper left side as well. None of it is terrible pain, it's just annoying and it worries me that either things are spreading or maybe the tumor is just sitting on a nerve.

Jump to this post

In life there are both clubs we seek to join and clubs that seek to join us. Welcome to the lung NETs club. We’re all here for you. Great that you don’t have any respiratory symptoms. Best of luck with your upcoming procedures. If you’re being told slow growing then you likely have typical carcinoids which is good. A lot of us have had slow growing lung NETs for a long, long, long time and we are still enjoying life. After you read through all the existing lung NETs threads with stories, please feel free to ask any additional questions you may have. 😊

REPLY
Please sign in or register to post a reply.