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6 month tests

isletcell's picture
isletcell
Posts: 70
Joined: Mar 2004

Hi my name is Jennifer and i was diagnosed with an islet cell tumor of the pancreas 6 months after the birth of my daughter. I had a whipple operation to remove the tumor in september 2003 and have had no additional treatment.The pathology report found that it had gone into one of my lymph nodes.And they said at the time that they are now worried about microscopic disease.I had a ct scan last thursday and they said that a few of my lymph nodes were swollen to 1.5 cm around the liver area. So, I paid to get a PET SCAN on Friday and am waiting for the results. Now I also feel in limbo. I am 33 years old and am facing an uncertain future. I am now waiting for the results of my 6 month post surgery tests; and I am finding it very hard not to feel terribly scared and stressed out.I have been wishing that i could find some other young people to connect with that might understand. I feel sometimes eventhough i am feeling well now, that i have a big C hanging over my head. So many friends and family have been wonderful, but at the same time some friends have proven to be "fair weather friends". I pray my tests go well. I love my husband and my daughter so much, I really dont want to leave them.Sorry for rambeling on. Just one of those days!
God Bless,
Jen

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hello! My name is Susan, I am also in a sort of "limbo" right now, so I know how you feel! I am actually kind of surprised that you did not receive any "treatments" after they discovered that you had lymph node involvement. Hmmm......Anyway, I am 33 years old and I have been dealing w/ colon cancer for the last two years. I had a recurrence to the liver last year and had my second surgery followed by chemo which ended August 28.....so that was right around the time that you had your surgery. They are checking me every 3 months....In November I went for my first checkup and everything was OK. Then in February I went again. I was VERY nervous leading up to that doctors appointment....it wound up that my CT scan showed two "nodules" on the right lung (very small 3-5mm), so they could not tell if they were cancer or something else. I then had a PET scan done, and it showed no uptake of glucose on the smaller of the two, and only a small amount of uptake on the larger one, not what would normally be expected if it was cancer. My blood tests were also normal, but my doctors still could not rule out another recurrence because of the small size of these things. Now I sometimes feel like I wish I did not even know about these things! I feel physically fine, as you probably do too, but mentally I am having a hard time. I am just waiting till May to be checked again, hoping and praying that these two "spots" either go away or stay the same! I know how you feel "waiting". But before you know it you will have your results. I hope they are conclusive and give you the answers you are looking for. I can give you the same advise that I have been given. I am afraid of leaving my husband behind too, but everytime you think "What if I die?", try to turn it into "What if I live!". Go ahead and make plans and dream about the future. I have also been told that every thought you have paves the way for your future, so try to think good thoughts. If you have a bad thought, counter it w/ a good one! Another thing that helps is going for walks, taking yoga, getting massages, etc. If you want to talk more, you can send me a personal e-mail. I check to see if I have messages almost every day. Hang in there! I know this sounds "cliche", but try living one day at a time for now. You feel good today, right? So don't act like you are sick. Get out there and live and don't worry about what may or may not happen. (easier said than done!)

isletcell's picture
isletcell
Posts: 70
Joined: Mar 2004

Hey Susan! Thank you so much for your support. I am at a total loss for words.
I am also 33 and live in Vancouver B.C. canada which is so close to you. I guess the reason that they didnt give me chemo was that there is no evidence that Chemo will help my particular type of cancer. Neuroendricine or an Islet cell tumor. My case was presented in front of a board and then sent off around the world to various experts in this feild and the response was 50/50 on weather or not to get it. My oncologist and My husband and i decided to take the advise of the leading expert out of Sweeden and opted not to get chemo because we would like to have another baby and the long term risks of chemo outweighed the bennifits.
I think you and i were in the hostpital at the same time. my surgery was sept. 14th. I am so glad to hear that you have access to a PET Scanner. In Canada it is not covered by the medical so we have to pay first 2800cdn then last friday 2400cdn. Not cheap, but well worth it. I get my results tommorrow around noon and because its private i get to view them by E-Mail. The only problem is that a PET Scan can only pisk up activity that is 1cm as a rule of thumb and the lymph nodes were only 1.5 cm so I'm right on the boarder line?????? The radiologist who read the CT last week said that he was concerned that it may not show up on PET. I am so nervous about what the news may be. Im just not sure if there is any Chemo that will work for my type.
I have to say i do think alot about dying and its still very premature;but i think what you said about the What if i live question is something that i will never forget. I think right now im just a bit panicked. Yesterday i went for a nice hike4 in the woods with a friend of moine who is a chemo nurse and it was really great just to get some fresh air. I have had a cold all week too and then this news so i kind of burried myself in the house. I think your right about the importance of just living. God only knows how much time we have here, or anybody else for that matter. I just feel so bad for my husband he has been so strong and I know it has been so hard for him especially with a new baby. I feel like writing Operah or something to honnor the men in our lives that do so much in every way when their familys are faced with this terrible disease.
I cant tell you how nice it is to have met someone that understands. I will keep you in my prayers and please feel free to E-mail me any time.
Jen

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

Hi Susan: Iwas reading an old post of yours about PET scans/lung spots, and you said that you were waiting for another scan-(PET, CT?) in May..I'm "Nanuk" or Bud, and have lung mets. Presently on a
break from chemo, and am also "waiting"...Ct scan scheduled in August, but they never mention a PET..
Just wondering about your scan results and if they were able to determine if "lung mets". Bud

klker
Posts: 8
Joined: Mar 2004

It is nice to meet you Jennifer, wish under different circumstances. I am a 30 year old hodgkin's patient. I am sorry about this horrible waiting period you are going through. The waiting is sometimes the worst. At least when you get the results (good or bad) you know what is going on. I am wishing good thoughts for your post surgery report and your PET scan results.
I am scared also, and although you can think good thoughts and distract yourself with everyday life, the fear of cancer is there...we just have to keep on trying. Trust me I know, even trying is a struggle. Lean on your husband, enjoy your baby and keep talking to those of us who know what you're going through and want to talk to you as well.
Best wishes, KLKer

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Oh Wow, it just started to snow! See, I guess we just have to enjoy all the little things......Every day there is something to be grateful for...I was just thinking about what Jennifer said about her husband. I felt like I was the only person with those thoughts. I was diagnosed w/ cancer only about 3 months or so after we got married and I always feel like somehow Stephen got jipped, you know? Like he got a "dud" wife w/ bad genes. I know it is not my fault that I came down w/ a disease, but it is so unfair for him. I feel more afraid for him than I do for myself! He lost his mother when he was only 13 and I just cannot bear the thought that he could lose me too! It is really hard to get those horrible thoughts out of our heads! I think that we have to realize that even if something did happen to us, they are not helpless and people can and do go on. It of course would be difficult for them, but they would manage to go on I think. Most importantly, I think you just have to have faith that will not happen.

isletcell's picture
isletcell
Posts: 70
Joined: Mar 2004

Hi guys! the news was good news. Thank you so much for your thoughts. This board has really been a place of refuge fo me. There was no uptake is the nodes or the liver! We see the surgeon tommorrow to go through all of this and be clear for the reason of the enlarged nodes. I thint they will also book another CT scan in about a month or so to see if they have shrunk.
Back to Limbo land.
I think of all of you each day. Our stories are all so different. I am so grateful for this board. And for all of you who reach out and touch the lives of people in need. I guess that would be all of us though wouldnt it?? I cant tell you how much easier the last week has been because of you. For that I thank all of you.
Your in my prayers,
Jennifer

klker
Posts: 8
Joined: Mar 2004

That is great news Jen! I too was at my hospital today and had a decent visit...no "bad" news and then the normal BS "problems and issues"; but I remember thinking while I was there that you were getting your results and was wondering how they were. I realized how nice it was to look forward to hearing your news and talking to others who understand what "a day at the hospital" is like.
Good luck with your CT and will talk to you again- KLKER

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

That is so awesome! See, there is hope for all of us! Geez, I bet you are so relieved, what a load off!! I would take this as a very good sign indeed. It does not really matter why your lymph nodes are enlarged.....they are probably just hard at work fighting off cancer! Go immune system, GO! I am just so pleased to hear your good news. Please keep reading these posts, I am sure you will be an inspiration to many people. I hope I can lean on you when it gets close to the time of my "checkup"........take care, Susan

klker
Posts: 8
Joined: Mar 2004

Hey Jen and Susan- I wanted to tell you about this other site I go to as well- planetcancer.org
For so long any support group I attended & almost all the doctors offices were mostly made up of patients much older than I was. It is helpful to speak to all different types of cancer patients but sometimes it is really nice to speak to people our own age. These posts prove that. This other sight we are actually on the "older" end of the spectrum for the most part. The woman who started it is in her thirties(Heidi) and there are others as well. I am "red head" over there. Hope to speak to you both there or here.
Hope you enjoy it. Best wishes, klker

isletcell's picture
isletcell
Posts: 70
Joined: Mar 2004

Thanks for that info I'll check it out!!
Jen

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