I am not a cancer survivor or

hamumlo
hamumlo Member Posts: 8
edited March 2014 in Young Cancer Survivors #1
even diagnosed ... I have had tons of tests and still feel crappy. I fear that as I push them to look further that they will find that it is some sort of cancer. Can you tell me how long it took you to be diagnosed... the wait is killing me.

Comments

  • katienavs
    katienavs Member Posts: 88 Member
    #2
    I am not sure what your symptoms are but why do you think you have cancer? The young survivors on this board have all different types of cancers and all of our stories are very different. Be persistent in finding out what is making you feel poorly and pray that it is something easy to fix. I understand waiting for test results is very difficult but I would try to focus on it not being cancer or any disease. Stay positive.
  • DIVA
    DIVA Member Posts: 38 Member
    #3
    getting diagnosed with anything could be a long process it took me 9 months to be diagnosed with cancer. The doc was 100% sure it wasnt cancer but he was also finally out of options and did a biopsy of the mass I had in my lungs and woops it was cancer. It also could have been 100's of other things. Good Luck. It takes time..... Be Patient and document your issues so that when your doctors ask ?s of what is wrong you wont forget a single thing.
  • hamumlo
    hamumlo Member Posts: 8
    #4
    katienavs said:

    I am not sure what your symptoms are but why do you think you have cancer? The young survivors on this board have all different types of cancers and all of our stories are very different. Be persistent in finding out what is making you feel poorly and pray that it is something easy to fix. I understand waiting for test results is very difficult but I would try to focus on it not being cancer or any disease. Stay positive.

    Thanks for your response. Mostly weak, nauseas and I think a little swollen in upper abdominal. Did tons of blood work on me and nothing looks out of wack. Went to urologist yesterday for follow up on a urinalysis that we thought had blood in it and didn't but when the resident was examining me he said that most of the people he examines are "fat" and so he didn't want to alarm me because maybe my organs just felt different but he thought that he felt a "mass" below and to the left of my breastbone ... so now i'm worred. He told me to go back to my primary care and have her examine my abdominal area again -- and I know that she's just going to be thinking "hypochondriac" ... but I still think better safe than sorry. The resident also told me that all the blood tests could be normal and I could still have many different types of cancer, but that it wasn't probable because of my age and family history. I'm just tired of worrying. Did you have to just hound your doctors to find out? And how are you doing now?
  • hamumlo
    hamumlo Member Posts: 8
    #5
    DIVA said:

    getting diagnosed with anything could be a long process it took me 9 months to be diagnosed with cancer. The doc was 100% sure it wasnt cancer but he was also finally out of options and did a biopsy of the mass I had in my lungs and woops it was cancer. It also could have been 100's of other things. Good Luck. It takes time..... Be Patient and document your issues so that when your doctors ask ?s of what is wrong you wont forget a single thing.

    Thanks for your reply. And wondering were you a smoker? I keep reading things about lung cancer showing up in just about anyone. Hope you are well.
  • katienavs
    katienavs Member Posts: 88 Member
    #6
    hamumlo said:

    Thanks for your response. Mostly weak, nauseas and I think a little swollen in upper abdominal. Did tons of blood work on me and nothing looks out of wack. Went to urologist yesterday for follow up on a urinalysis that we thought had blood in it and didn't but when the resident was examining me he said that most of the people he examines are "fat" and so he didn't want to alarm me because maybe my organs just felt different but he thought that he felt a "mass" below and to the left of my breastbone ... so now i'm worred. He told me to go back to my primary care and have her examine my abdominal area again -- and I know that she's just going to be thinking "hypochondriac" ... but I still think better safe than sorry. The resident also told me that all the blood tests could be normal and I could still have many different types of cancer, but that it wasn't probable because of my age and family history. I'm just tired of worrying. Did you have to just hound your doctors to find out? And how are you doing now?

    I would be nervous too if the resident said he thinks he felt a mass and then sent you back to your primary care doc. If he really thinks he felt something then he should have given you a CT scan. It is good that your blood work came back good. Are you eating well and exercising? What do you mean by swollen? My age and family history of cancer astounded the doctors when I was diagnosed with stage iv colorectal cancer at 24 with no history. So they shouldn't dismiss that something could be wrong just because of that.
    Although it does make it much less likely.
    If I were you I would be persistent in finding out what is wrong and don't worry about being a hypochondriac, you have to be your own best advocate. You should try to find out if you could be allergic to something you are eating, like gluten.
    Good luck in figuring this out and don't be too scared that it is cancer. I have a feeling the doctors will be more willing to help you if you say I need to find out why I am feeling so poorly and not you need to find out if I have cancer.
    Take care!
  • hamumlo
    hamumlo Member Posts: 8
    #7
    katienavs said:

    I would be nervous too if the resident said he thinks he felt a mass and then sent you back to your primary care doc. If he really thinks he felt something then he should have given you a CT scan. It is good that your blood work came back good. Are you eating well and exercising? What do you mean by swollen? My age and family history of cancer astounded the doctors when I was diagnosed with stage iv colorectal cancer at 24 with no history. So they shouldn't dismiss that something could be wrong just because of that.
    Although it does make it much less likely.
    If I were you I would be persistent in finding out what is wrong and don't worry about being a hypochondriac, you have to be your own best advocate. You should try to find out if you could be allergic to something you are eating, like gluten.
    Good luck in figuring this out and don't be too scared that it is cancer. I have a feeling the doctors will be more willing to help you if you say I need to find out why I am feeling so poorly and not you need to find out if I have cancer.
    Take care!

    Hello again, wow 24 is very young! And sounds like you're doing well. I am kind of mad that he didn't just to a ct then and I'm actually going to an urgent care today to have someone else take a look at it as I can't see my primary care doc for another week ... I can't wait that long. Yes I was glad about blood work but then the resident also told me that all your blood can look good and you can still have cancer -- I wonder why they even do blood then. I'm kind of forcing myself to eat -- not as hungry as usual and seem to get full fast which i know is a symptom of a lot of centers in the abdominal area. I think that the swelling is a distention of my abdomen and right at the bottom of my left rib cage it's puffy.(spleen area) and that is what got me freaking out. I've never done any allergy testing -- but that can't cause enlarged spleen can it? thanks for your words.
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #8
    Were you able to find out anything yet? Just wondering. Good luck and be persistent!
    Susan H.
  • hamumlo
    hamumlo Member Posts: 8
    #9
    shmurciakova said:

    Were you able to find out anything yet? Just wondering. Good luck and be persistent!
    Susan H.

    nothing yet ... had a ct of abdomen today ... dr. was doing it for my peace of mind? but i'm very scared about results. thanks for checking on me
  • hamumlo
    hamumlo Member Posts: 8
    #10
    hamumlo said:

    nothing yet ... had a ct of abdomen today ... dr. was doing it for my peace of mind? but i'm very scared about results. thanks for checking on me

    ct came back normal ... i'm still questioning ... when they do a ct do they look at everything or only what the dr. says to look out ... yes, i'm a little paranoid
  • katienavs
    katienavs Member Posts: 88 Member
    #11
    hamumlo said:

    ct came back normal ... i'm still questioning ... when they do a ct do they look at everything or only what the dr. says to look out ... yes, i'm a little paranoid

    everything on the ct will be looked at. as far as the torso goes...there are abdominal, pelvic, and chest scans. and then of course full body.
    the radiologist would read the entire scan. i think you can rest assured there are no visible masses. and its great that your blood work is normal.
    i don't want to tell you to ignore the feelings you have that something isn't right with your body but i think you should give yourself a break and not try to convince yourself you have cancer.
  • hamumlo
    hamumlo Member Posts: 8
    #12
    katienavs said:

    everything on the ct will be looked at. as far as the torso goes...there are abdominal, pelvic, and chest scans. and then of course full body.
    the radiologist would read the entire scan. i think you can rest assured there are no visible masses. and its great that your blood work is normal.
    i don't want to tell you to ignore the feelings you have that something isn't right with your body but i think you should give yourself a break and not try to convince yourself you have cancer.

    thank you for all your responses and i agree that i might need to lay off ... but my concern was that drs. always try to attribute everything to anxiety or stress when you're a woman ... makes me really angry ... and i have a little girl, 10, who needs me so my health is so important ... anyway, thanks again for all your kind words.
  • DIVA
    DIVA Member Posts: 38 Member
    #13
    hamumlo said:

    Thanks for your reply. And wondering were you a smoker? I keep reading things about lung cancer showing up in just about anyone. Hope you are well.

    Smoking had nothing to do with my lung cancer. The kind I had is not caused by smoking and I had only been an occasional smoker for about a year or so. On and off in social settings. The cancer I had is contriversial because its a 50/50 draw between doctors there is no evidence its caused by smoking but some just say it is to have a reason.
  • hamumlo
    hamumlo Member Posts: 8
    #14
    katienavs said:

    everything on the ct will be looked at. as far as the torso goes...there are abdominal, pelvic, and chest scans. and then of course full body.
    the radiologist would read the entire scan. i think you can rest assured there are no visible masses. and its great that your blood work is normal.
    i don't want to tell you to ignore the feelings you have that something isn't right with your body but i think you should give yourself a break and not try to convince yourself you have cancer.

    Another quick update. After having all of these tests done I traced back through the details of not feeling good. I went into the doctor for what I thought was a uti and felt worse and worse after I started taking CIPRO ... after doing some reading I have come to the conclusion that I was having reactions to the medication .. that stuff is scary.
  • srisko
    srisko Member Posts: 33
    #15
    Hi Hamumlo,
    I was diganosed Acute Lymphoblastic Leukemia on September 21st 1990 when I was five. Propbably 3 weeks before that I was having pain in my right knee because bone pain is one of the symptoms of leukemia. My mum brought me to one hospital where I diagnosed with something different and kept at that hospital for a week. A week later I wasn't better so they did surgery on my leg and that's when they found the leukemia cells. I couldn't be treated where I was so I was sent to Floating Hospital in Boston. I'm 23 now and I haven't had any second cancers so I don't really know what its like when adults are diganosed but, I hope you're not worrying about too much. I hope you good support system around you because that is a key thing to help get through it. Please don't worry too much; surround yourself with positive things and I hope you'll get through this,
    Sarah
  • Mannie
    Mannie Member Posts: 52
    #16
    hamumlo said:

    Thanks for your response. Mostly weak, nauseas and I think a little swollen in upper abdominal. Did tons of blood work on me and nothing looks out of wack. Went to urologist yesterday for follow up on a urinalysis that we thought had blood in it and didn't but when the resident was examining me he said that most of the people he examines are "fat" and so he didn't want to alarm me because maybe my organs just felt different but he thought that he felt a "mass" below and to the left of my breastbone ... so now i'm worred. He told me to go back to my primary care and have her examine my abdominal area again -- and I know that she's just going to be thinking "hypochondriac" ... but I still think better safe than sorry. The resident also told me that all the blood tests could be normal and I could still have many different types of cancer, but that it wasn't probable because of my age and family history. I'm just tired of worrying. Did you have to just hound your doctors to find out? And how are you doing now?

    Length of Time For Diagnosis... Too Long
    I don't want to scare you but it took me a REALLY long time to get diagnosed. So, when I was accurately diagnosed, even with it being cancer, I was relieved. I was relieved because I finally had a diagnosis. In 2001 I was having confusion and headaches, Jan. 2002 I had an MRI that showed abnormal signaling in the right frontal portion of my brain. The radiologist said it was either from scarring caused by trauma or a low grade neoplasm. I went to a neurologist who treated me for migraines and ordered another MRI in 2003. Once again there was something there but this time the radiologist thought it was just ethmoid sinusitis because the mystery spot was on the right side behind my forehead. It was dismissed as a normal MRI. So I ended up at my PCP. I had visual disturbances, personality changes, extreme fatigue, daily headaches, soon it became daily headaches with nausea and then with nausea and vomiting. My headaches were alway in the AM so when I would go to the doctor in the afternoon I'd feel pretty good considering how lousy and too sick to move I had been a few hours earlier. Here's some of what I was diagnosed with: migraines, cluster headaches, sinus infection (about a million times), bipolar disorder, Obsessive-compulsive, normal postpartum emotions, normal postpartum exhaustion, oh, and my personal favorite...psychosomatic. My vision changes worried me enough to see the eye doc. He said my vision was fine. I went to the chiropractor but my back wasn't out of place. All my blood work was ALWAYS excellent. Towards the end I couldn't hide how sick I was, I would wake up around 2AM everyday and vomit non-stop until about 10AM. March 12th, 2007 I went to my PCP for my headaches being out of control and popping Excedrin every 3 1/2 hours. She said she wanted me to go see one of her buddies who was a headache specialist. I never got there. I referred myself to the ER three days later. A simple CT scan I had done there showed I had a large mass in the front of my head, even the ER staff was shocked. My brain was so swollen that the right half was smashing into the left side. So, as you see, it took me quite a while to be diagnosed. I was originally diagnosed with a GBM, which is the worst kind of brain tumor with a very short life expectancy. However, based on the histology, the official diagnosis was a gemistocytic astrocytoma. If you try to look it up online, you won't find anything about it. The histology report was not good and my prognosis isn't great but I'm not dead yet. It makes me angry that somewhere I fell through the cracks, big time. I completely empathize with you, I know exactly how you feel. All along I knew there was something wrong with me but I didn't know what. When you push for the right diagnosis, you are your own patient advocate. I advise you to keep looking for what's going on. Try homeopathic docs if you need to, try voodoo docs if you need to, whatever. I live near Pittsburgh, PA and we have some absolutely fantastic docs here I know a few and could give you a few names if you'd like. So, it took me from 2001 to 2007 to be diagnosed.
  • Unknown
    Unknown
    #17
    This comment has been removed by the Moderator
  • davidbdailey
    davidbdailey Member Posts: 20
    #18
    hamumlo said:

    Hello again, wow 24 is very young! And sounds like you're doing well. I am kind of mad that he didn't just to a ct then and I'm actually going to an urgent care today to have someone else take a look at it as I can't see my primary care doc for another week ... I can't wait that long. Yes I was glad about blood work but then the resident also told me that all your blood can look good and you can still have cancer -- I wonder why they even do blood then. I'm kind of forcing myself to eat -- not as hungry as usual and seem to get full fast which i know is a symptom of a lot of centers in the abdominal area. I think that the swelling is a distention of my abdomen and right at the bottom of my left rib cage it's puffy.(spleen area) and that is what got me freaking out. I've never done any allergy testing -- but that can't cause enlarged spleen can it? thanks for your words.

    CT and or PET SCAN
    I think they should've have done at least one of those scans. IT should be a must! Keep Pushing them don't put it off and PUSH, PUSH PUSH. It's your LIFE! May GOD BLESS YOU!

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