Recovering from ileocecectomy surgery for NETs at Mayo

@taly I am glad that things are going well for you. How have you been feeling recently?

@dadcue You know way more than I do about this stuff. I was pretty nervous about surgery and things have mostly gone great in my case. The question of "Why surgery?" is a good one. I had a few symptoms (frequent stools which would sometimes become loose). That would never have motivated me to do surgery. What motivated me was to get as much of the cancer out as possible to have a better future outcome. Maybe the Lanreotide is doing that for you. I wish you luck! And clarity for any future decisions?

@post17 It sounds like our NETs and our surgeries were similar, but I am at the beginning of this journey. The path report says Grade 1, Stage 2. I don't know if that means meds now or not. My follow up appt to explain the path report is not for another 9 days. I don't have an oncologist yet. Which Mayo do you go to? I'm a patient at the Phx, AZ one. If you are as well, do you have an oncologist to recommend? I hear Sonbol is really good.

Yes, I've been keeping a diary of foods and poops. 🙂 I'm 11 days post-op, so I'm keeping my physical exercise to walking. I can't wait to get back to normal activities! Thanks for sharing!

@taly

When do they say you can get back to normal activities?? I suspect you still have some restrictions like no heavy lifting --- no more than a gallon of milk. I'm just trying to evaluate how much of a recovery time there is for surgery like yours. I'm only at the beginning of this too. Without any biopsy, my oncologist is estimating a Grade 1, Stage 2 NET based on my scans. More details will be known when I have surgery because the scans might not detect everything and show all the details. What it known is the primary NET in my ileum has been there at least 5 years and has spread to at least one distant site.

I have read that it takes about 3 months to get back to normal baseline energy and physical capacity. My baseline is not that great to begin with.

@colleenyoung Thank you for asking what is helpful to know beforehand. I'm 11 days post-op, so it's possible I will still be discovering answers to that in the coming days and weeks.

I used to work as a research analyst, so I like to know the entire lay of the land I'm getting into, from best case scenario to worst. I realize some people find it more helpful to avoid all of this and just trust the doctors and rely on whatever they tell you. The caveat there is to make sure that doctor is a NET specialist.

Otherwise, for someone like I am, being on a forum like this was invaluable. Doing a review of available journal findings, such as Pub Med, etc., was very enlightening. Since AI does not always give an accurate summary, I would ask it to cite all its sources and then look at that myself. Most people would probably not want to get that into the weeds.

Taking a trusted person to important appts and also asking the doc if it's okay to record them and doing so was really helpful. My surgeon gave some percentages on recurrence rates in cases like mine and none of the 3 of us present got that until reviewing it later.

I found it was helpful to take the first food steps slowly, not overdoing it (after no solid food for 5 days straight and wanting to wolf it down) . I mostly didn't need adult incontinence briefs but it gave me piece of mind to wear them in the beginning and they once saved me from messing the bed. So getting over my resistance to wearing them helped, though I no longer seem to need them.

I found a base of safe foods and how to eat them (e.g. learning not to do things like drink juice with my meal). Then I started adding one new food to that and recording how it went (which has been surprisingly good!) .

Another thing I learned. The people closest to me may not be the best ones to support me when I'm having emotions like anxiety or sadness. They're afraid too and they want me to be okay and happy and grateful all the time. Sometimes other people are the ones who can hear whatever emotions I'm working with and not be undone by that.

In my case, the reality of living without an IC Valve is much more doable than I feared it would be.

@dadcue I have found that hard to pin down. No lifting twisting, bending, reaching, pulling, heavy exertion. I asked my surgeon if it was okay to do things based on how it felt and he said "No!" I need to protect that area.

The way I feel now, I could get back to normal activities or close to it once they okay that. They revised mine to 15 lb limit, though I believe discharge instructions said 20 lb. It hasn't hampered me too badly. If I need furniture moved I have to ask for help. I packed several small travel bags instead of my normal suitcase to travel to surgery.

After today I'll be living alone again. I may have to flag down a neighbor occasionally to help with anything heavy. I'm doing this part of the recovery at a friend's house in a city where I don't have to worry about snow. There will be a lot of shoveling to do when I'm back home; we average 9 ft a year. I'll be asking again about that when I go to my FU appt.

Overall, the physical recovery from this has been surprisingly easy. I went off all pain pills while still in the hospital. I was walking the day after surgery. Yes, I get tired, but I just nap then; I haven't found the fatigue to be overwhelming. Besides, I was pretty fatigued before surgery, so I'm not sure it's even any different. It's possible it's better. I hope you have an easy recovery as well!