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

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 🙂

@t2639

I'm so happy to hear from you and know that your surgery went well. It sounds as if you have taken good care of yourself and that is so important. I especially like your comment, "I am trying not to give my body anything to get mad at me."

Good food choices are so important after this kind of surgery. Also, gratitude and gratefulness are important psychological practices that really do help the healing process, which I'm sure you can attest to.

I understand what you mean by scar tissue. During my second surgery, one of the biggest obstacles was dealing with the scar tissue from the first surgery and then the removal of the gallbladder also happened during the second surgery.

Are you able to move around and get some exercise? If so, how much walking are you able to do before getting tired?

Hi billyfeet,
I had two NETs on the tail of my pancreas both over 2 cms. They were both grade 2, well-defined tumors. I had a bout of pancreatitis caused by the tumors, and they found them. I had my distal pancreatectomy and splenectomy on March 6th, so, just over a month ago. They also took out 10 nearby lymph nodes. Of the 10, 3 of them were NETs. Because of the low grade tumors, my oncologists are thinking I might possibly be done with cancer; I go in today to see if they are going to do any adjuvant therapy to reduce the risks of recurrence. Fingers crossed.

As for whether I regret it, not at all. If we would have waited, the chance of metastasis to my liver or lungs was really high. It still could happen. But even being grade 2 tumors, they were growing pretty big. They had also started to move into my lymph nodes. Depending on the of type tumors, waiting can just mean growing and spreading. That was my experience at least.

As far as the surgery, he did a full incision, a full 12” long to go in and be able to run an ultrasound on my pancreas and everything to make sure he had the margins he wanted. I am not going to sugarcoat it. The first week in the hospital is pretty rough with a full incision. It sounds like it is less so with laparoscopy. You are managing pain and trying to get your digestive system running again. Still, no regrets. There are some people on here that have done day by day journals of their time in the hospital. I would read some of those as well.

Good luck. Sounds like you have a tough decision ahead of you.

Blessings,
Scott

After the first week, does the hospital stay get better? I'm going in for a distal in June. 2cm net, not urgent according to my surgeon, but i have opted not to wait.

Hi vmchow,
I was only in the hospital for a week, and then I went home. I walked so much in the hospital that I got to know every single nurse, doctor, and secretary on the floor. So, I was ready to get out of there. That is my advice for the hospital. 1) Walk as much as they will let you. I would have walked all day if I could. 2) Even if they let you eat whatever you want, don’t overdo it. Your digestive system is jacked-up. I progressed slower through the clear liquid, full liquid, etc. plan than the doctor even gave me permission to

Once I was home, it was a matter of staying up on my pain medication and not overeating. If I ate too much I felt miserable. I had a 12” incision, so it took a bit longer on the pain medication. I also was careful WHAT I ate. Low fat/low sugar was helpful for me. Getting my digestive system back on track took a bit of time. Also, the pain meds are notorious for causing constipation. From time to time I would take one of the powder packets of Miralax. That helped a lot. And…I walked. I would walk as far as I felt comfortable a few times a day.

I went back to work part-time 4 weeks after surgery and was full-time at 6 weeks. I am a teacher. I could have been full time at 5 weeks, but it was Spring Break. My surgeon said that he has seen so many people go back to work full-time too early and then have to back off.

Hope this is helpful. Probably more information than you wanted. 🙂

Hi vmchow,
I was only in the hospital for a week, and then I went home. I walked so much in the hospital that I got to know every single nurse, doctor, and secretary on the floor. So, I was ready to get out of there. That is my advice for the hospital. 1) Walk as much as they will let you. I would have walked all day if I could. 2) Even if they let you eat whatever you want, don’t overdo it. Your digestive system is jacked-up. I progressed slower through the clear liquid, full liquid, etc. plan than the doctor even gave me permission to

Once I was home, it was a matter of staying up on my pain medication and not overeating. If I ate too much I felt miserable. I had a 12” incision, so it took a bit longer on the pain medication. I also was careful WHAT I ate. Low fat/low sugar was helpful for me. Getting my digestive system back on track took a bit of time. Also, the pain meds are notorious for causing constipation. From time to time I would take one of the powder packets of Miralax. That helped a lot. And…I walked. I would walk as far as I felt comfortable a few times a day.

I went back to work part-time 4 weeks after surgery and was full-time at 6 weeks. I am a teacher. I could have been full time at 5 weeks, but it was Spring Break. My surgeon said that he has seen so many people go back to work full-time too early and then have to back off.

Hope this is helpful. Probably more information than you wanted. 🙂

Thank you so much. All the information was very much appreciated. You've given me some hope that this isn't the end of my life. it's easy to slip into despondency . This disease seems so uncharted and even the doctor doesn't talk much. Fistulas and diabetes loom in my imagination. It's good to hear someone's story which isn't all gloom. Many thanks.

I had surgery on March 10. It was an open distal with splenectomy. Spent 8 days in the hospital because I developed pneumonia within 24 hours after surgery. Had drain removed before I went home with no complications after. After I went home I rested when I felt tired and walked a little bit everyday and built up from there. Managing pain I used ibuprofen and Tylenol and it worked great. There was no need for me to take narcotics. Diet wise I ate very two hours smaller portions because I would get pain if I ate two much. I stayed out of work for six weeks. Today I feel great. Back to my regular eating schedule. Not over eating. Lost 14 pounds. All margins were negative so I didn’t need further treatment. Follow up and scans every six months for the next five years.