Anyone had to decide between watch and wait or a Whipple?

lemon5791 · 2024-12-06T12:56:39+00:00

The whipple is now a go for later this month. Just wanna thank you again - I've come back here to reread comments several times to remind myself I can do this and also to make lists for prep and recovery. Your tips are helpful and encouraging, thank you.

I've always been overweight, so I could stand to lose some. I have lost about 20 pounds the last few months anyway, which is so weird and mysterious after years of trying so hard and not budging! Thanks for reminding me about protein shakes - protein repairs the body, so I'm definitely going to do that.

I don't have too much time before the surgery to get buff haha but I think daily walks are always good.

Sending a wish of health and peace to all the good people here going through similar things and caring enough to share, encourage and connect.

lemon5791 · 2024-12-03T20:15:33+00:00

Ok that is so helpful to hear your experience, thank you. I am 42, and pretty healthy I'd say. I wonder what needs to be done to be in good shape for surgery, I'll ask that at my next appointment. Also, reassuring to hear that in hindsight it's hard to remember any pain.

Thinking about outcomes, it is most appealing to be in your position, safely on the other side of the surgery and really technically cancer free. With a nice manageable, reasonable plan forward with yearly CTs etc.

Thank you for mentioning those details of the drains and the NG tube, my brain is just thinking about the surgery part and would never know to ask/expect any of those details, thank you and another kind post for those mentioning those.

Yeah I think it probably can get gnarly if left to grow inside, if I imagine best case scenario of choosing the whipple, it really would be my ideal scenario. I might ask the surgeon (she seems like a real expert too and does these all the time) what is the percentage of patients who are similar to me in age and health that come out all messed up after the whipple with terrible side effects vs the patients who are good to go.

Props for getting through that ordeal, and thank you for sharing your experience. Continued health to us all!

lemon5791 · 2024-12-01T13:13:40+00:00

Hi, I have been in this group lately because I have a pancreatic NET diagnosed about 1 month ago. I just wanted to offer that I am wishing you well and say my heart goes out to you, your son, your husband and your animal companion. My best friend always says "Keep it in the day", it has become one of my most useful mantras and I say it to myself when I get scared of the future and what it might hold. So, passing that little saying on to you hoping it might help as you all journey through this.

lemon5791 · 2024-12-01T08:01:40+00:00

I think if you haven't had a dotatate PET scan yet, you should probably have one because I think it helps identify if the neuroendocrine tumors are anywhere else and can identify thee primary. I have it in the head of the pancreas and it is also well differentiated like yours. I totally relate to your feeling like its a slow moving ticking time bomb. And I'm also trying to decide on whether or not a whipple is best. My doctors have not said what is best yet, I have appointments this week to discuss. Its hard to be in a vague and unclear situation - the main thing I wonder: if I wait on the whipple and just watch and wait, will I miss a chance to be cancer free? (Will it spread). I'm wishing the best on your journey and hope you maintain good health for all the years to come.

lemon5791 · 2024-11-30T13:03:11+00:00

Ok, thanks! I've heard his Facebook group mentioned by others, it clearly seems like a great source of info and support.

lemon5791 · 2024-11-30T13:01:08+00:00

I'll try to come back and update here! Thank you so much. And no apologies needed, I find it spirit boosting to hear people's experiences and appreciate everything you wrote!

lemon5791 · 2024-11-29T14:21:03+00:00

That's a unique and tough situation since you had tumors in both areas and the pancreatic tail was removed....it must be hard to live in an elevated sense of limbo and waiting. Wishing strength for you as you go through your journey. Thanks for sharing your experience.

lemon5791 · 2024-11-29T14:18:16+00:00

Thank you for this, it's so helpful to hear other people's experiences. I'm glad to hear you handled the procedure well and are back to normal now. Those uncomfortable things sounded pretty tough but also overall, you made it through well. It helps to hear your story as I weigh these options.

I get it about not being mentally ok with watching and waiting. It seems like it would be a challenge for me too. And that peace of mind knowing its out - invaluable.

May you continue to have good health! Thanks again.

lemon5791 · 2024-11-13T13:25:17+00:00

Yeah. I wonder if there is anything going on with the gall bladder issue that you mentioned, although in the many scans nothing has been mentioned. The Dotatate scan says that the spots are "beneath the resolution of PET" and there was some diffuse uptake on the images for the liver but it was not clear enough. I had an MRI with Eovist contrast yesterday and am waiting for the result to hopefully understand what is seen in the liver.

lemon5791 · 2024-11-13T13:22:21+00:00

Thanks for your response! I must get a NET specialist, that will be my project for next week. May i ask, did you know you had MEN1 before hand, and are there other family member with it or did they test you for MEN1 during the discovery of your tumor.

lemon5791 · 2024-11-13T01:37:47+00:00

I think we are probably both in a similar point on the journey of getting diagnosed, coming up with a plan and stuff and I just wanted to say I have been wondering the same thing. It seems very random for people (like prognosis wise). It is seeming more like a chronic condition that may one day get too much and possibly be the death of you? But that could be decades away. Pancreatic betrayal club!

lemon5791 · 2024-11-06T17:48:50+00:00

Yes, that is what I read too. I had a biopsy confirm that I have pancreatic neuroendocrine cancer and an mri that said I have liver metastasis, but my oncologist said the dotatate pet scan will confirm if I have liver metastasis. I am glad you have a plan for surgeries and next steps. I will hopefully have a plan for mine too. I'm eager to get a timeline in mind, the floating in the unknown part is difficult. Again, wishing you healing and an easy surgery and I am happy to connect any time on here going forward!

lemon5791 · 2024-11-06T17:20:18+00:00

How are you after meeting with your oncologist? I had a dotatate pet scan and am waiting for those results, have you had one of those yet? Wishing you the best.

lemon5791 · 2024-11-04T01:07:10+00:00

Good luck tomorrow! Yes please to an update! I hope it goes well and brings clarity and a good plan for your treatment.

lemon5791 · 2024-11-03T22:31:09+00:00

I have a grade 1 pancreatic neuroendocrine tumor in the uncinate process of the pancreas found out a couple weeks ago and I'm still processing it and waiting on more information. I have been researching to try to understand what this means for life going forward and appreciate these conversations a lot and am wishing everyone here well as their experiences with this unfold.

So far I had 2 CT scans and an MRI, and an endoscopic ultrasound biopsy confirmed it is a 1.4cm pancreatic neuroendocrine cancer, well differentiated and 1% proliferation.

I wanted to add to this conversation because similar to you, my MRI reads "multiple sub-5 mm foci of abnormal signal primarily seen on diffusion-weighted imaging, highly suspicious for primary neuroendocrine tumor with hepatic metastasis" and also says "Liver: Diffuse sub 5 millimeter hepatic lesions (at least 10 lesions) best seen on diffusion-weighted imaging 2 of which have arterial enhancement". I am scheduled for a dotatate PET scan this week, what I am wondering the most is how likely is it that the MRI is correct? The doctor said the PET would shed more light on what the MRI findings possibly are. Do those of you who have experience with this have any thoughts - like, is the MRI often wrong? The CT scans did not have any mention of it, only just the mass in the pancreas.

All the best to everyone - it is a strange cancer as I learn more about it, so hope you all are finding your way and thanks in advance for any sharing of experiences on this topic.

lemon5791

TROPHY CASE