I need prayers everyone, I think my cancer came back, or it just never went away.

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Happieapple
Happieapple Member Posts: 11
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Well, back in July I was declared in remission, meaning there was nothing showing up on my PETs, and then I got two more rounds of intense chemo and was still clear. Three days ago I got a follow up PET and today my oncologist told me that there were two tiny metabolic spots.
I can't do anymore chemo, so my options are radiation (since the spots are so small) and bone marrow or stem cell transplant. Bone marrow is really freaking me out. Theres a bunch of side effects and just being in the hospital for a prolonged time scares me. And I'm only 19! I mean, yes I would much much much rather be alive, but the whole "you'll become infertile" thing is really awful.
My oncologist said there was less than a 20% chance it could be scar tissue or something else, but I mean, if I didn't have scar tissue on my last PET scan and nothing else was done to me, what else could it be??

Anyone know if PETs even pick up scar tissue? I'm just praying that I have some sort of infection or anything, ANYTHING else but cancer.

I know posting this is a good step towards acceptance, but I still haven't fully comprehended that I've relapsed or was just never in remission. My mind keeps telling me that it is a mistake or a dream or everything will just disappear and the situation will be fine. I don't know whats going to happen when I do fially realize it. I just...I'm too young! Maybe if I had my life on track already I'd have an easier time putting it on hold, but I don't. I'm still trying to make my life and the universe is trying to stop me! Whyyy?!?

Sorry bout that. But yeah, I really, really, really am praying like every minute that it isn't cancer, though, deep down I think we all know...

Thanks and much love,
Emily

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  • vinny59
    vinny59 Member Posts: 1,036 Member
    #2
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    maybe not
    Hi Emily, I too have a similar situation with my PET scan, I have an uptake of 2.5 on my pelvic bone, after being in remission. My oncologist told me that a PET scan would pick up "activity" there because that's where the blood is made. If this uptake was on a organ she would be alittle more concerned. I had her compare past scans with me, and looking at the film, I can see a big difference of when I had cancer. Where on your scan are the two spots? She also told me that I would need radiation if this increases. I know the feeling of having anything show up, it really sucks!!! Just try to stay positive! Vinny
  • jimwins
    jimwins Member Posts: 2,107
    #3
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    Positive and warm thoughts coming your way....
    Hi Emily,

    I am thinking positive thoughts for you. I know this is scary.
    Big hugs across the Internet... ♥♥♥.

    I read Vinny's post and hopefully it's something like that. You might
    want to get a second opinion or pet scan. Dr's are not always right.
    I was misdiagnosed with a second cancer before my surgery. In fact it
    was the primary reason for the surgery (at the time). After the surgery,
    they didn't find that cancer. The surgeon told me it was either
    a mistake or they got it during the biopsy. However, the surgery was a good
    thing as a gastro specialist told me I was headed for blockage due to damage
    to that area (small intestine). I can tell you certain things were better
    after the surgery so I'm thankful for it. Sorry if I got sidetracked there ;).

    My point is, maybe have it verified. Regarding the stem cell transplant, there are
    several people here with that experience and they can share with you. I'm not a woman
    so I can't personally relate to the "infertile" concern other than having a rough,
    impathetic idea. What I would say, is you can still become a mother
    through other options.

    You are beautiful, young and strong. I know the road ahead may be difficult but
    you have all of us here behind you. You are in my thoughts and prayers.

    Hugs again,

    Jim
  • JoanieP
    JoanieP Member Posts: 573
    #4
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    so young
    I am so sorry you have been on this journey and you are fearful.. I know it is hard not to jump to conclusions when you have had cancer. The advice given by Vinny and Jim is good. Prayers coming your way:) Joanie
  • Happieapple
    Happieapple Member Posts: 11
    #5
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    vinny59 said:

    maybe not
    Hi Emily, I too have a similar situation with my PET scan, I have an uptake of 2.5 on my pelvic bone, after being in remission. My oncologist told me that a PET scan would pick up "activity" there because that's where the blood is made. If this uptake was on a organ she would be alittle more concerned. I had her compare past scans with me, and looking at the film, I can see a big difference of when I had cancer. Where on your scan are the two spots? She also told me that I would need radiation if this increases. I know the feeling of having anything show up, it really sucks!!! Just try to stay positive! Vinny

    Theres a spot right in the
    Theres a spot right in the middle of my chest and somewhere a little lower near my aorta I think he said? Those were spots we had difficulty with before though...
  • donna87
    donna87 Member Posts: 9
    #6
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    I had hodgkins disease at
    I had hodgkins disease at age 18, very close to the same age as you. I had one PET scan that came back lighting up in groin, ureter and left side of my neck. My oncologist said it was nonspecific and to repeat in two months ( it was the longest two months ever) but everything came back fine and my WBCs have been fine. I hope this is the case with you. I would give radiation a try but please make sure they monitor your heart function I had ABVD and mantle cell radiation and now my heart function is so low they don't think I am strong enough for children ( I am 24 and married now). This can be prevented by monitoring your heart something that was never done for me. I don't want to discourage you, in my opinion radiation was nothing compared to chemo and like you said being alive is better and children are a blessing no matter where they come from.
  • Happieapple
    Happieapple Member Posts: 11
    #7
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    donna87 said:

    I had hodgkins disease at
    I had hodgkins disease at age 18, very close to the same age as you. I had one PET scan that came back lighting up in groin, ureter and left side of my neck. My oncologist said it was nonspecific and to repeat in two months ( it was the longest two months ever) but everything came back fine and my WBCs have been fine. I hope this is the case with you. I would give radiation a try but please make sure they monitor your heart function I had ABVD and mantle cell radiation and now my heart function is so low they don't think I am strong enough for children ( I am 24 and married now). This can be prevented by monitoring your heart something that was never done for me. I don't want to discourage you, in my opinion radiation was nothing compared to chemo and like you said being alive is better and children are a blessing no matter where they come from.

    I actually got it last year
    I actually got it last year when I was 18, sooo I might be in the same boat as you! But yeah, I'm seriously, seriously hoping it is a mistake. I might not be able to have kids either because, like you, I got ABVD, but that didn't get rid of everything, so I had to get BEACOPP as well. That had even more Adriamyacin and thats why I can't get more chemo. There's a lifetime limit and my heart could mess up
  • winthefight
    winthefight Member Posts: 162
    #8
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    Happieapple said:

    I actually got it last year
    I actually got it last year when I was 18, sooo I might be in the same boat as you! But yeah, I'm seriously, seriously hoping it is a mistake. I might not be able to have kids either because, like you, I got ABVD, but that didn't get rid of everything, so I had to get BEACOPP as well. That had even more Adriamyacin and thats why I can't get more chemo. There's a lifetime limit and my heart could mess up

    prayers your way
    Hi,

    Scans and waiting for the results of scans are extremely scary. So, we understand your concerns. Yes, scans can pick up scar tissue. Discuss your results with you Oncologist or better yet, discuss the results with the technician. They are the experts on reading and interpreting the scans.

    As one who was adopted by loving parents, I agree with the other survivor, there are other options. I understand it is not the same. But once you love a child, it is eternal. Therefor; becoming a parent is still an option.

    You are a very wise young lady. Not everyone would think to reach out to others for pray. Prayers of the righteous got me through it. Prayer will work for you too. God is still in the healing business.

    Take care young lady and keep us posted. Saying a prayer for you right now.

    Winthefight
  • KC13167
    KC13167 Member Posts: 215
    #9
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    Emily,
    Will pray for you.
    Emily,

    Will pray for you. Please keep us posted!

    Love,
    Kellie

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