Has anyone chosen the Watch and Wait and regretted that choice?

Hi Scott,
I am curious to know about the outcome of your follow up appointment as I too have lymph node involvement. But for me, the tumor board, surgeon, and neuroendocrine specialist all concur that no other treatment is warranted at this point. (My tumor was nonfunctional and causing zero symptoms.)
I am curious to know if they ended up recommending any adjuvant treatments for you?
It seems crazy to me that I am not doing anything proactively, especially since I had lymph node spread(6 of8)😬😬😬
Thanks, and God Bless

Hey Frogsong,
They hadn’t heard back from the specialist yet, so they decided not to do any adjuvant therapy. We will see if they hear anything soon.

It seems that sometimes they are saying that they got everything and I should be good to go, and there are times that it seems that we are just waiting for cancer to show up in my liver. I kind of wish we were doing more. I am not sure what therapies they can do when there is no actual tumor.

I am connecting back up with them for a scan in early June. We will see if there is any more information then. I know that there is increased chances of liver metastasis if there is lymph node involvement, but it also depends on whether the tumors are well-differentiated and what grade they are. My KI-67 scores were 8% and 10%. Grade 2 well-differentiated.

Good luck with everything.

Blessings,
Scott

Thanks for the reply Scott.
I too am having a 6 mos post surgery follow up MRI. (Mine is in July.) My tumor was well differentiated, Grade 1, KI67 was 6.7 % and mitotic rate 0.2 (Not sure how I am Grade 1 with my KI67 being 6.7. It must be because of my low Mitotic rate).
I too, feel like they are just waiting for it to show up in my liver or bones or somewhere. I wish there was a proactive treatment available. But as you said, I guess without a tumor to fight, (and with no symptoms in my case)there isn’t much that can be done yet….

Thank you augustine777. You have provided good and helpful information I will use after my surgery. I am scheduled for a distal pancreatectomy and splenectomy April 25, 2023.

Hi. I too am on a watch and wait recommendation and am very uncomfortable with that. My NETs were found incidentally - went in for an excruciating nerve pain issue in the front of one leg and they did a CT... and wow. I went immediately to my PC physician at Mayo and was referred to Dr. Jason Starr in Jacksonville. I have a primary tumor in my small intestine. Two colonoscopies later, and one biopsy, no one can get to my tumor non-surgically so a biopsy was done from a spot/tumor big enough to get viable samples on my peritoneum. The many, many spots on my liver were too small and not viable for the biopsy. Biopsy confirmed positive for malignancy - well differentiated neuroendocrine tumor, grade 2. I was diagnosed with stage 4, metastatic cancer with tumors in my small intestine, liver, peritoneum, and lymph nodes. Right now my only symptom is pain, sometimes significant, up under my right ribs (from liver I assume). I am going to MD Anderson in Houston in two weeks for a second opinion on my treatment recommendation. I am seeing Dr. Daniel Halperin. Is anyone familiar with him? I did a lot of research on him (and others) and it appears he is doing a lot of trials and research.

Good luck tomorrow. We all will be thinking about you and praying for a speedy recovery!
God Bless!

Good luck tomorrow, you got this. Look forward to your updates after the surgery. Let us all know how we can help! You got this!

Great hospital. Prayers your care is appreciated.

@whynotme

Wishing you the best care and outcome possible!

I guess its time for an update. On April 14'th Dr Cleary and his team went through the same incision (as from the Feb 21 surgery) to address the right lobe of my liver and take out my gall bladder. So today is day 11 from my second surgery and I am doing very well. From what I can tell, scheduling this large procedure over two operations is rare, but the whole point is to get 90% of the tumors out (or more) ; while at the same time not kill my liver and keep me safe. The hardest part for the surgeons = getting through the scar tissue while in surgery #2 , as a result from surgery #1. I am 56 years of age with no other co-morbidities and was in shape. I left the hospital after day 4 because I was doing so well (my pain has been managed with acetaminophen and ibuprofen only since day 3). My incision is healing nicely. I do have pain throughout my abdomen and it can be quite painful and sharp. And I am still anemic; my hemoglobin is low (I did get 3 units of blood while in surgery and one unit on day 2). I get up to walk throughout the day, but I am very tired often and have to lay down. One thing that is really helping; I almost never take off my abdominal binder ...I think it helps lessen the tension on the tenuous fascia (from surgery #1) around my sutures; and it feels good. I am sleeping well which is is so important! So although my energy level is low and I move slow; my healing is good :).
The other thing ...my gall baldder is now gone ....so let's talk about that. Do not do what I did. I went to the internet and looked up complications from gall bladder removal; you will eventually get to something called "Post colysysectomy Syndrome" which is not good. I do not know how often it occurs but is is scary in terms of quality of life and pain. Having my gall bladder removed has not been of any great consequence thus far. I do get some intestinal pain as my food digests but it is mild and does not last. Almost no diarrhea. But I am strict with my diet ...lots of water...fruits and veggies ..grilled chicken...protein drinks ...ie .... I am trying not to give my body anything to get mad at me. The gall bladder produces bile which helps to digest fats.....so I try not to eat any fats.
In summary I am doing good and grateful from all of my doctors and nurses that take care of me. The nursing staff at the Mayo clinic, while in recovery, well I can't sing their praises enough. So now I heal and enjoy each moment, each day, and practice gratitude as much as possible.
I pray a lot too; it is the best the thing for me hands down. I could not do it with out Jesus; I surrender it all to him....it takes the pressure off 🙂