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Diagnosed with Stage 4 pNET: What should I know?
Neuroendocrine Tumors (NETs) | Last Active: Sep 21, 2023 | Replies (36)Comment receiving replies
Talkativeinfl, first of all, I’m so very sorry to hear about your husband’s situation and your struggles with it. While I have not been in your situation I am a 5 year survivor of NETS (started in the small intestine but wasn’t discovered until 2018 when I had a blockage and I’d been sick since 2007). And I was a therapist for 34 years. This situation you’re in is very challenging. Getting some support for you is very important. Colleen is so right is suggesting you connect with the Caregiver link on Mayo Connect. Also, cancer centers and hospitals usually have in-person support groups. They also have patient navigators and/or medical social workers there to help not only the patient but the family too. And where is your son in all this? Can he be a support for you and your husband? You said your husband is Catholic so is there a priest he would feel comfortable talking to?
I would encourage you to consider finding a grief counselor for yourself. I have a close friend (herself a therapist) who sees a grief counselor twice a month, not because her husband has passed away but because he has dementia and there are multiple challenges dealing with that.
Lastly, while every case is different, these tumors are normally slow growing and while still considered “rare”, they are becoming more common, possibly due to more advanced ways of identifying them which leads to more research on ways to treat them. When I was finally diagnosed in March 2018, I was told it was Stage 4 as I have several small tumors scattered throughout my body (a larger one in my stomach) and here I am over 5 years later, turning 74 soon, and pretty much living a normal life. I have had Lutathera treatment and been on Octreotide shots every 28 days, but so far, so good.
I’m sure you can find help at Mayo in Jacksonville and you’re not far away (I spent my teenage years in Jacksonville). Please take care of yourself. I believe there are answers out there to your questions and concerns. Please check in when you can.
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Thank you and congratulations on living with this monster. I am USUALLY an upbeat optimistic person so feeling like this is so hard to get use to. I guess our friends don't know what to say so they just avoid us. Out of site out of mind, our son just started his own company doing pest control after 8 yrs with a well known company that was bought out and changed where the customer satisfaction was 2nd to the almighty $. He tries to help as much as he can but with the challenge of trying to make his new business work and basically taking care of all his young families needs from cooking to cleaning and laundry while his wife works too. He has so little time. It is nice that sometimes his jobs bring him out here a few times a week where he "visits" his dad but I feel guilty that I have to work to keep up with everything and fight workers comp, be my husband's advocate and deal the the hard stuff. He has too numerous to count tumors in his liver and what is left of his pancreas is fully evolved and I now suspect it has traveled to his brain. 7 months ago he was sharp as a tack but has become altered and has trouble with simple math and often messes up the check book. Than God I have the mobile banking app and keep track of things. He too takes the octreotide and has had mixed results. While it is helping some, it also causes him to constantly move his bowels, sometimes not even finishing a meal 1st, and that's with 2 different medications to prevent that issue. I pray to God so often I think sometimes He says, oh no, not you again, lol. I would be more optimistic if I saw a slight improvement but so far it seems to be a rapid decline. While I only spend about 4 waking hours with him 5 days a week, the 2 that I am off I try to make the best of. Sometimes he is chatty and more like his normal pre cancer self, but most times he prefers to sit and watch t.v. quietly or sit outside which is hard for me with the heat. As a heart patient the heat and humidity do me in quickly so I spend maybe 15 mins while he spends hours. I thank God every day for what time He gives me with my husband and the fact that my husband has our sweet furbaby who is also my service dog to keep him company and somewhat active. We have sought what little help is available in our area but he refuses to go to Jax, even for the special PET scan.