Metastatic Neuroendocrine Carcinoma..?

Daemon · New User Joined: 22 Nov 2007 Posts: 2

Hello all

(First of of i should appologise if i make some mistakes, english aint my primary language..)

I would like to share my story and maybe someone have some more things to add to something we might miss.
About 2 years ago i lost my mother. At age of 30 (1984,i was about 7 at that time) she was diagnosed with Non-Hodgkin Lymphoma but she survived it. Docs were able to catch it on time and with ray therapy (Cobalt rays) and chemotherapy were able to cure it. After 20 years, in 2004 she was diagnosed with sarcoma (Grade 3) on her back with almost covered all her spine. Docs said that was possibly from the rays she had 20 years ago.. The only thing they could do was a surgery to remove most of it and chemo wich didnt do much.. Doc that cured her was very straight.. After about one year in hospital and after the surgery and chemo he said it very straight that wasnt anything we can do anymore, just that we should wait and pray that she will have a stroke or a heart failure so it will end soon and without pain.. (those were his words). Unfortunatly it took a while..

This was something like a prologue..

The problem i have now is related to my future mother in law.. Sometime in June my fiancee told me about some "tumors" that she saw on her mothers back and pain on back and abdominal.. In that moment the image of my mother came to me. Told her to get ready, that difficult times might come.. (We didnt said anything to her mom so we would not worry her and after all was only something i guessed..) In same month we got in to hospital for those pains and unfortunatly after about a month of exams docs gave me right, diagnosis was Metastatic Neuroendocrine Carcinoma, with metastases to her spine, lymph node on her right upper part of leg (wich showed the cancer from the biopsy) and head and unknown primary. Only therapy they did was a largest dose or ray therapy so it wouldnt create a problem to her spine. After a couple of months of more exams we moved to a oncologyc hospital where supposedly we would have better treatment. Docs tried a Octreoscan treatment wich didnt do anything and right now they have her on Sandostatin LAR. Right now they want her to leave from hosp because they dont have anything more to do. They said we should just wait and would be better not to cope her with other exams because there isnt anything that anyone could do to help her. We should only try to make her remaining life better.. Yes, she could have more tests, like a PET-CT or something else but even if we got something from those, like a primary but there wouldnt be anything to do about it anyway.. She doesnt want to leave from hosp.. she is worried that docs didnt took care of her like they should have and they might of missed something.. She constantly reads about diff tests in magazines and asks docs to have them.. I believe she didnt actually realized what she has.. she thinks that she will have a therapy and she will get back to her normal life.. altho docs told her whats going on, we told her.. One day she sais she knows and understands and day after that that she asks for more tests that i believe will not help with anything, will just make her feel worst and tire her. She is in bed since June, she cant walk because of the pain and her legs are very week right now..

What should we do.. any advice from you.. something more we could do and we miss it..? Anymore tests out there that we miss, that we dont have them here..? Anything..?
Personally from my experience i believe that docs did all they could and i agree with them that only thing that matters right now is how she will live her life from now on.. am i that wrong..? Should we move her from one hospital to another with the hope that we might find something..? I cant tell them what to do, only what i believe, but still it doesnt feel right..
I regret that with my mom i didnt let her rest and "enjoy" the life she had remain, i always looked around to find something (a better doc, a better treatment), i took her from a hosp to another to try different things.. The only thing i got was more pain and no results.. At that time i wasnt thinking about it, i was only "trying to save her". Since she died untill now is eating me, i should have let her in her peace.. My fiancee and her sisters are in that position now, they want to "save" her.. Fiancee knows how i feel and most of the times she agrees with me but her mother wants more.. she puts presure on her to do more..

Am i wrong?

Im sorry if i tired you all with my long text.. Its not many times that i get it all out of my system.. and i dont know.. maybe i feel tired but i love her almost like i loved my mum.. even if i feel that isnt anything we can do i dont want to quit.. but on the other hand i dont want my fiancee to feel like i feel..

AuntBec · New User Joined: 26 Nov 2007 Posts: 1

Hi Daemon,
I'm brand new to this site, so forgive me if I seem a little out of it too. My mom was diagnosed with Metastatic Neuroendocrine cancer in February. We got her to San Antonio to a wonderful facility, even though we had been told that she was at stage 4 and the best we could hope for was that chemotherapy would shrink it some and then they could control the pain. We are now in the control the pain part...my brothers want to take her all over the U.S. to find other "cures", of which there are none from what I have learned and heard from the doctors. My mom has also been listening to news reports and reading magazine stories, looking for that "alternative" that will let her live to see grandbabies and weddings. In my heart of hearts, I know we'll be lucky to last until Christmas.

You hold on to what you know in your heart is right, but as hard as it is, you have to let your love hold on to whatever is right in her heart too. My darling husband has offered his advice and sometimes I love him for saying it and other times I want to snap his head off. He's doing it out of love, and I just hang onto that.

Good luck, sweetheart, and feel free to write me back if you just need to talk. I'm a good listener.....
Peace,
Becky

brainman

Hi Daemon.

I am so sorry about your mother and now your mother-in-law. First, it does sound like you are a loving son-in-law. You care very much for your mother-in-law.

Although what your mother-in-law is doing is really causing you a lot of pain, can you support her in her decision? She needs to know that even if you disagree with her choices, you will still be there for her supporting her in her decisions.

My mother died over nine years ago of a primary brain cancer two months after her diagnosis. She opted for no treatment and I think she made the correct decision for herself. If it where me, I think I would make the same choice. However, I would like to think that if my mother had asked for the full treatment that I would have supported her decision.

My father died just over one year ago of ALL (a form of leukemia) almost 1 year after his diagnosis although he had been sick for much longer. We now know that he was fighting Leukemia all along. After diagnosis, my father opted for full treatment. I was living with him and was his primary care provider. Like you with your mother and mother-in-law, it was not easy to see him fighting against the inevitable. However, I did support him and fought with him. If I were him, I probably would not fight so hard.

All of us are unique people and have the right to make health care decisions for ourselves and to expect that those around us who most love us will support us in whatever we choose to do.

One further question: Do you know specifically what type of cells are involved in your mother-in-laws Neuroendocrine Tumor? There are several types and it helps to know the exact one she has.

You, your mother-in-law, and your families are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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