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My worst fear


dcorey33

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After my lung surgery back in May the oncologist I saw said I was cured. Now after months of mysterious symptoms, they are now saying that maybe the carcinoid has spread. I knew after all the reading I did there was a 75% chance of it reoccuring somewhere else, because of it's size when it came out and because it was atypical. I have always held on to that 25% chance it had not. Nothing confirmed yet. I go in for an octreotide scan this next week. The one test I told them I needed in the first place and back then they said it was not needed. As my Dr. put it he (the oncologist) pulled an oops. So I am facing my worst fear all over again.

I am actually really calm. I think in part that I knew that this was a possability. I just was not expecting it to come so soon. I am hoping that it is nothing, even though they are prety sure. I am just a little nervious and wanted to get it out somewhere. Only my husband, best friend and my mom know. My husband and I have decited not to tell our daughter and other family untill we know something, but I needed to get it out.

Thanks for listening.

I will update as soon as I know something.

dani

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So sorry, Dani, BUT try to breathe until you know something for certain. I'm not sure I could do that, but just felt the need to tell YOU to do that. I will reamin hopeful right now. I am glad you felt this was the place to let it out. You know we are all here to support you......no matter what. Let us know when you find out for sure.

Kasey

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I recently found out about an oncologist in San Francisco who is supose to be an up in coming carcinoid specialist. He joined Kaiser last year (my health plan). My reg. Dr. has emailed him to get opinion and to see if he will see me. It is over 50 miles from where I live, but I told her I was not going to see the same oncology Dept. again because of the way I was treated. I am luck in the fact that I have a great Dr. who is willing to help me.

Like I said I am still holding on to that 25% chance that it has not spread. Life goes on and this is just my new normal.

Thank you

dani

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I don't know when I will get the results, but I will let all of you know. This is going to be a busy week for me. I have a head CT on Mon.(I passed out a few times last week at work and it is just a precaution) and the scans on Teusday and Wed. I also work full time so I will have to make up the time somewhere as well LOL...

Thank you for your thoughts and prayers.

Don M- I hope yours is gone as well.

I like to see the positive in everything, even if it turns out to be not so great news. It always could be worse.

Here is to hope :wink:

dani

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Hi There...sorry you are having concerns...not gonna tell you not to worry cause that's all I ever do...but try not to jump the gun...it may not be anything but "another' scare...AND...I would positively see another 'onc'...no reason for you to be treated like that...prayers for you...PamS.

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I got my scans done this week :? and it looks like the cancer might have spread to my pancreas :? They are sending me to get a P.E.T. scan next, to get a better image. Not sure when that will be scedualed, being the holidays are next week and all. I am hoping it is nothing and just a meaningless shadow. I have so many feeling running through my mind right now. My husband says it is going to be nothing, but it is kind of hard to have his optimisum all the time. I am really scared :cry::cry:

Danica

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At my high points of anxiety, I try to tell myself not to give cancer one more minute of my time. I tell myslef not to let next week's test to interfere with this week. I don't want to spend THIS week worrying about NEXT week.

Sounds good, but of course it doesn't always work.

Prior to my lung surgery I was on an anti-anxiety med, and anti depressent, and an ativan for those over the top moments.

Good wishes and good vibes

gail

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Thank you so much for all fo the prayers ans advice. I think the only time I really think about it is at night when I can not sleep and I look over at my husband and he is just staring at me (because he can't sleep either). Neither one of us ha really talked about it. It is like we are avoiding it. This coming holiday is going to be interesting, because we have not told any family. His family is coming into town and I am wondering how we are going to explain my apperance to them. I have dropped 40 pounds since they saw me and that was a heathy weight.For the past few months I have not been able to keep food in me for any lenth of time (one of the symtoms of carcinoid syndrome). It is kind of sad when you can wear your 11 year old daughters jeans, because yours don't fit LOL... It is not for lack of trying. My husband is set agaist not telling his family untill we have concrete news. I agree as long as they don't have to see me. I just don't want to lie to them at all either. Other than that my days are so full of everyday activities I don't have time to think about the cancer except for when I am in hthe Dr.s office LOL..

dani

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I got the test date for my P.E.T. scan. They want to do it this Sunday the 26th. I didn't think they were going to have an opening that soon, but I guess it depends on the priority of the case. Apparently mine was high.

I still have hopes that this is nothing but a shadow and all is well. Even if the Dr.'s say otherwise, but even they have known to be wrong :wink:

Danica

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