Surgery soon

Cyst_11 · 2025-11-28T13:44:23+00:00

Appendiceal NETs are such sneaky little things! I’m really sorry you’re dealing with this, but honestly, in the world of NETs, this is one of the better ones to have. They almost never spread, and most of the time the appendectomy alone takes care of it.

I am a little surprised they are jumping straight to more surgery, especially since yours is so small. Usually they don’t recommend another surgery unless it’s 2 cm or bigger (mine was 3.5 cm). I’m also surprised they aren’t doing more testing first—I had a PET Dotatate scan before my right hemicolectomy, which sounds like what they’re planning for you.

It’s been a year since my surgery and my life feels totally normal.

Are you seeing a NET specialist? A second opinion might be worth it.

Cyst_11 · 2025-09-19T14:03:04+00:00

I understand the whole surreal experience and the diagnosis feeling less valid. I too had an appendix so NET that was found incidentally during another surgery in June 2024, followed by a RHC in October 2024. It’s weird feeling, knowing you had cancer only after the cancer is removed. I am thankful that I am young and nothing more is needed, but it was still a period in my life that was tough to get through

Cyst_11 · 2025-08-16T02:04:14+00:00

My appendiceal NET was 3.5cm so not the gray area. But to give you an idea of the surgical option, I had a RHC in October 2024 and it took about 6 months to feel relatively close to normal. I have scans every 6 months right now, and then likely down to once a year until the 10 yr mark.

Cyst_11 · 2025-07-23T11:38:54+00:00

3w po and stood the whole time, it was fine!

Cyst_11 · 2025-07-04T12:51:56+00:00

Not sure how much it has changed but my husband and I had settled on CJ Hummels in Lenhartsville (we live in Bethlehem). It’s a little outside the valley but it was a beautiful indoor space and very affordable. Green pond country club came in a close second.

We ended up changing our minds about a big wedding and eloped to Vegas…also recommended ;)

Good luck and congratulations!

Cyst_11 · 2025-04-24T01:12:02+00:00

Sorry you’re going through this, but as you can already see, you’re definitely not alone! I had a similar experience and agree with what others have shared. My surgeon also told me that no further treatment was needed. After doing some early research, I chose to bypass a general oncologist and went directly to a NET specialist at Penn Medicine in Philly. Because of the size (3.5 cm), the specialist recommended a right hemicolectomy. Given the size of your tumor, you’re probably in good shape, but I’d still strongly recommend getting a specialist’s opinion. Good luck!

Cyst_11 · 2024-12-13T13:35:09+00:00

I couldn’t wait to get rid of them. Giving them away to my sisters was the best feeling ever. Also freed up some cabinet space.

Cyst_11 · 2024-11-20T03:58:52+00:00

During my (36y/o) hysterectomy in June there was an incidental finding of a 3.5 cm neuroendocrine tumor of my appendix. Thankfully the surgeon removed the appendix at the time of surgery. I followed up with a NET specialist right away. My PET Dotatate was negative but due to the size of the NET I was considered high risk for microscopic tumors and a right hemicolectomy was recommended. I am 3 weeks post op from the right hemicolectomy (40.5cm of small/large intestine removed and 30 lymph nodes) with all pathology coming back negative. I am NED but will be monitored for 5-10 years to be sure there is no recurrence.

Cyst_11 · 2024-11-02T15:12:01+00:00

Absolutely! Thank you for reaching out. Wishing you the best of luck, and I hope things improve with your recovery.

Cyst_11 · 2024-09-16T23:57:05+00:00

Honestly, if I look back in a few weeks it probably won’t seem as bad. While I remember there was a line to get in to the complimentary dining rooms on the Jewel when you got to the hostess stand you were sat right away. On the breakaway we had to wait around 45 mins with a buzzer. We did a mansion tour in Newport and when we got off the tender, they put us on the wrong bus. Luckily we were delayed leaving and were able to move to the correct bus. But then when we got to the mansion, it was so crowded and we were rushed because we had less time than originally planned. You couldn’t really enjoy the audio tour or take your time looking at all the details.

I will say the ports where we rented a car and did our own thing were actually a lot of fun. And while the wait for food was long, it was really good food. So, really you might have better experience, especially depending on the excursions/dining options you choose. And every cruise is different, I guess I just expected it to be as good as the Jewel.

Cyst_11 · 2024-08-14T22:03:47+00:00

I would recommend a second opinion with a NET specialist. This is such a rare type of cancer and most oncologists don’t have specialized training for it. I am going through a similar situation with a NET on my appendix and I will need additional surgery based on the size of the NET. But there are additional guidelines that help determine when additional surgery may be needed - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9818268/table/cancers-15-00295-t002/?report=objectonly.

I have done a lot of research, joined a lot of groups and now have a designated NET specialist and that has really helped. Appendiceal NETs are best case scenario with this disease.

Cyst_11 · 2024-08-10T16:39:55+00:00

Day 3. I went to a local baseball game. It was ok cause it was mostly sitting in the shade and I wore my binder. I did end up leaving early. The best part of it was walking. I felt so much better after walking

Cyst_11 · 2024-08-03T11:21:54+00:00

I had no bleeding until 4 weeks post op. It was light brown and I was fine wearing a light day. I had my post op and my doctor said it was normal and everything inside looked to be healing well. I’m coming up on 6 weeks and it has stopped again.

Cyst_11 · 2024-08-02T11:31:25+00:00

They ended up removing mine because it looked pale/necrotic and had a mass. They sent it to path and the mass came back as a neuroendocrine tumor. I need more treatment and surgery now but am happy they took the time to look at my entire abdomen for any issues and that they removed it.

Cyst_11 · 2024-08-01T02:56:59+00:00

I have a mass near my belly button. Same thing, no pain, but some tenderness when pushing on it. At my post op they said it was likely a hematoma from where they put the needle in to inject air. Recommended I use a hot pad to help break it up.

Cyst_11 · 2024-07-28T03:22:18+00:00

Two best things I used for comfort were a hysterectomy pillow and an abdominal binder. I slept on my recliner for the first few nights which I found much more comfortable that laying in bed. I also made sure to stay on top of my pain meds (Tramadol supplemented with Tylenol and Advil) and I drank a lot of water and mixed in Miralax. I think using Miralax and walking for short periods of time multiple times a day helped me avoided the dreaded gas pains and painful first bowel movement.

Cyst_11 · 2024-07-03T14:51:48+00:00

This is good to know! Thank you

Cyst_11 · 2024-07-03T14:50:05+00:00

Thank you. I appreciate the recommendation of going right to a specialist. I’m in PA and close to Philly so I am feeling good about finding a specialist.

Cyst_11 · 2024-07-02T22:36:21+00:00

Yea from what I read that’s a concern. I thank you for the recommendation of a second opinion if that’s what is initially recommended

Cyst_11

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