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Could use some friends

Posts: 8
Joined: Aug 2002

Hi everyone. Hi Jennifer islet (we met at another posting...) I am so glad to finally have a young cancer survivor group. I am 35, and I was 32 was I was diagnosed, and I always felt that support was geared towards older people (50s and up), the majority of whom have cancer.

I was diagnosed in August 2002 with a neuroendocrine tumor in the rectum. I had four months of chemo, surgery (including a colostomy), and radiation. About 6 months later, blood tests indicated a rise in my CEA level, and scans confirmed very large tumors in the liver.

I began chemo again in Sept. 2003, and after seven treatments, we have seen a significant decrease in CEA as well as tumor mass and volume. I just recently had an eighth treatment.

However, just yesterday, I received news that my CEA has gone up. That could mean nothing, or it could mean the tumors are growing again. I have to go back in a few weeks for another blood test and most likely scans.

I'm at a point where I just don't know how to handle the unknown anymore. I'm so afraid and frightened, and I have a wonderful boyfriend (we've been together 10 years), who has been my absolute rock throughout all this. But no matter what he says, or what any of my friends or family say, I still can't help fearing the worst. And waiting for the other shoe to drop. I would appreciate any advice and encouraging words. I think so often, how can one single person handle so much. I also have a father who has lung cancer with mets to the brain. He is not doing very well (is confused a lot), and circulation problems in his leg may have caused gangrene and he may be looking at amputation. So I worry about him, not to mention my poor mother, who has to take care of him, when she herself has had significant health problems recently and is in a wheelchair most of the time.

Sorry for going on and on! Thanks for listening.

I will keep all of you in my thoughts and prayers.


shmurciakova's picture
Posts: 910
Joined: Dec 2002

Hi! My name is Susan. I am a colon cancer survivor too. I am 33 - was diagnosed at 31. You can read about me in the previous islet cell topics (Jennifer) - also I set up a website here but it is not very detailed. If you want to write me a personal e-mail you can feel free. I know it is hard not knowing what is going to happen to you. I (and I think I can speak for Jennifer too) feel a certain amount of guilt dealing w/ my husband, who has also been a "rock" through all of this. We were only married for about 3 months at the time I was diagnosed!
As for your cancer......what treatments are you on? Why is your tumor inoperable? Are you being treated at a major cancer center? Have you had a second opinion? Please give a little more information and fill us in on what is going on......Try not to worry to much! A little red wine goes a long way!
Talk to you soon, Susan

Posts: 45
Joined: Apr 2003

Hi my name is Caty and I am 25 years old and a survivor of neuroblastoma. I also have learning disablites and congestive heart failure as a result of my chemo and radiation treatments. I was 13 months old when I was dignosed and I don't remember when I went into remission but I thank God that I am a survivor and for my family's support. I am also glad to have found this group for younger surviors or those going though treatments. I have always felt so young on this site and that this site is for geared toward older people too. I am glad to finally meet others closer to my age,at the same time I wish no one would have Cancer at all. Anyway I am glad to have found this site and I'm here as a friend to support and help anyone who might need it. I feel very blessed to have gone through so much. One last thing- If anyone was given the drug adrimycin or knows about where I might find out how it effects the heart(I don't think that's spelled right sorry) please respond. I really don't know much about what I had and my treatments so I will apriciate any help anyone can give me.

isletcell's picture
Posts: 62
Joined: Mar 2004

Hi guys!!! I cant tell you how much it means to have met others in the same situation.

I think that when your faced with a situation like yours there isnt much you can do while your waiting for the results of your tests. It is so scarry. You just get so frusterated waiting and all you want to do is just talk to the person who will give you the ansers. I often ask, why cant all of the docs just get together and have a pow wow and come up with the solution. I like the idea of the mayo clinic were you have many doctors and specialists all working together. Although i dont know anyone who has been there so could this really be possible?? and would there really be less frusteration for the patient?? Hmmmm.... sounds like more docs and clinics should follow their plan. Sometimes you feel like you are the only one left with questions. I think thats the unknown part of this disease or the dark side.

I think however that the message of hope that we all are looking for is what i have found here, talking to other survivors and dealing with the what if questions together. Even if its not always what we want to hear.Somehow, when another survivor has suggestions, it just seems easier to take and really think about, then when it comes from friends and family who have not been through cancer themselves.

I saw on another posting this web site that is called www.theinterviewwithgod.com it is so nice. Click on the icon that plays the video. Im sure you will like it.

Georgeann, I was wondering what they did for your liver?? Did you have a resection or just chemo??

I'm so sorry to hear about your parrents. I will keep you and your family in my thoughts and prayers. Sometimes just going for a long walk helps to clear my head and give me a new perspective on the day.


Posts: 4
Joined: Apr 2004

Hi, how are you? My name is Lisa. I was diagnosed w/ Breast cancer In Feb 2002. It had spread to my lymphnodes as well. I was 28 then and I just turned 31 this month. I was put in remission this past Feb 2004. At the time I had 2 boys David was 9 and Brendan was barely 2. I have 3 now.I have always been one of those people who thought it won't happen to me or my family. I just figured that things like cancer were for the movies or a select few. But growing up as a young girl most times thats what you think, we don't know any different. But in 1986 my father was diagnosed with Lung Cancer. I didn't really catch on or understand like I do now about what was going on. I just thought that the doctors would fix him and things would be ok. But, they weren't in Nov the same year he passed away I was 13. I struggled to understand but don't think I ever did till now. Then technology was the greatest as far as I was concerned. But I was wrong I never really understood the test of time and things aren't always fixable. But now at 31 I do. I have always had a passion for medicine. But anyway now I see things like this. Nothing ever happens for no reason, it always happens for a reason. My father passed at a young age of 54. And to my surprise I see it now that it was preperation for my future. He didn't ask for it but it happened. He did all that he could to survive but it wasn't enough. And since coming to grips with life I have adopted a motto.....Before cancer it was I don't have time for it, it has to have time for me. ( Then I would refer to colds things like that) besides if you think about it if you let a cold take control of you it wins right? But if you take control of the cold you win. )

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