Baby in NICU, PET scan results today - I am drowning!

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited February 2014

    Esmerelda........

    .....YEEHA  GIRL......:)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    Praise God! I'm so happy to hear your Great results......Shame on the doc for making you wait so long when a simple call would have lifted so much stress off of you. Make sure you tell him that when you talk to him.

    Paula

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    Just spoke with my oncologist and he said there was no "uptake," which is what they would see if there was cancer. He did ask how my hip pain was, and said that from the scan it does look as though there might be some sort of "congenital" issue with my hip/femur. (??) He said he would like to do another scan in 3 months. I asked him whether it was because we could find cancer at that time, and he said "it would be very unlikely," but we want to follow up...

    So. Ok. I don't want to overlook this good news - but I didn't expect them to want to follow up with another scan... And why? Can anyone shed any light on this? Or experience with this? I don't understand... 

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited February 2014

    Esmeralda,

    I do not know why he would do another scan, that's too much radiation if it is not necessary. I would have that scan sent to a orthopedic surgeon for a review. If you can find one that specializes in hips would be great.

    Not that you need surgery, but if there is a slight congenital issue, you might need to be doing a little PT to learn what type of exercise will help keep you strong.

    My DH has had both hips & knees replaced. PT is so helpful, and following through with the exercises.

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  • lovetodance1
    lovetodance1 Member Posts: 62
    edited February 2014

    Go to an orthopedic surgeon and get and MRI.no need for more radiation.no uptake... No cancer... Celebrate

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  • CarpeVinum
    CarpeVinum Member Posts: 116
    edited February 2014

    Yay! I'm a lurker who saw your post yesterday and have been following it. Great news. Enjoy your weekend Smile

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    ok, I will follow up with them about checking with an orthopedic surgeon. I can't imagine why they would want me to do another scan with all that radiation... It doesn't make sense! Do they think it could be cancer, but it's not showing - yet???? WTH!!!! 

    I don't want to be a drama queen, I just wanted assurance one way or the other. 

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  • J9W
    J9W Member Posts: 395
    edited February 2014

    Hi Esmerelda,  I am so happy to hear the scan results.  I had to stop the Tamoxifen after only 11 months. Not only did it hurt my joints, but I had horrible, throbbing pain in my thighs!  So don't discount that it could be the Tamox getting you. It took about a year after stopping the drug for that thigh pain to be completely gone. Dang, I hate the ever looming possibility of recurrence.

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  • Nan54
    Nan54 Member Posts: 93
    edited February 2014

    Yay!!!! Fantastic news! Hug your babies and celebrate. 

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  • april485
    april485 Member Posts: 3,257
    edited February 2014

    Esmerelda, have been lurking and happy to hear your news. Have you thought that perhaps the scan in 3 months might be so they can make money? Sometimes it really is as simple a reason as that unfortunately! You have been given some good advice above. If I were you, I would ask your doc to give you an understandable explanation as to why you should have another scan in 3 months. Just sayin...

    For you!

    image

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2014

    Great news, overwhelming blessings!  We are crying for joy with you!  

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  • sheila888
    sheila888 Member Posts: 25,634
    edited February 2014

    imageHappy Dance for Esmeralda 

    So happy and relieved the waiting is over with a happy ending

    Wishing you and your family Peace and happiness

    Sheila♥ ♥

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    Esmerelda - Don't get yourself all worried now just because they want to do another scan. Before your results came in, I wanted to say something, but didn't because it just didn't seem to be the right time, but I want to go ahead and say it now... 

    What I thought about saying is that when your results came back negative that it might be a good idea for you to talk to your doctor about therapy and anxiety meds. I say this because it sounds to me like you are in an incredibly stressful position & it just sounds like it may be a bit overwhelming. Having a premature baby who needs a tremendous amount of care, while a blessing is also scary and hard, and you have another little one to deal with. Add to that the fact that you have had to deal with this awful cancer yourself, after watching your mother deal with it? That is a lot on anybody's plate. You just had a MX, that just in and of itself is rough - and then without having really anytime to deal with yourself and your own feelings you have a premature newborn to care for? Sweetie, that is a lot - and then you anxiety level adds a whole additional dimension to things. 

    Please celebrate tonight and this weekend. You got great results.. your dr said already that it would be 'very unlikely' that a scan in 3 months would show cancer - he would not have said that if it weren't the case. So why is he having you do another scan - because something is causing you pain and he's your doc. After this weekend - spend a little time focusing on you. So many mom's put so much energy into their kids, their husbands, etc. But everybody needs sometimes to put themselves first and right now, it seems like your anxiety may be interfering with your life. Nobody wants cancer to take their life - but you don't want to let anxiety about cancer to be ruling your life either, no? 

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  • GeorgiaRai
    GeorgiaRai Member Posts: 175
    edited February 2014

    I've been following your posts, Esmerelda, and just wanted to add my "YAY" to everyone else's.  So happy about your good news!  Now you can enjoy your baby this weekend without this huge weight on your shoulders. 

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  • shoppygirl
    shoppygirl Member Posts: 694
    edited February 2014

    I too have been following your posts and am so happy and relieved for you!  

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  • Novagirl
    Novagirl Member Posts: 123
    edited February 2014

    Esmeralda, that is wonderful news! Take a big sigh of relief. As far as the scan again in three months, I agree with some of the other posters, he wants to do a follow up if the pain is still present. I think ZiggyPop gave such great advice. Often when we are in such stressful situations we don't even realize HOW stressful they are until it's over and we look back and reflect, then wonder how we didn't stroke out from all the stress. I have a friend who has a 2 yr old and a baby that was born at 28 weeks. They were able to take the baby home from the NICU at Arlington Hospital today. She was started on Zoloft for anxiety. The situation has been too much for her to handle and she doesn't have the BC worries and the baby was born a month after your baby. I don't mean to offer up advice, just wishing the best for you and your family. Kiss that little miracle baby and be well!! 

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  • Esmerelda
    Esmerelda Member Posts: 243
    edited February 2014

    I am SO grateful to read all your comments and feel your incredible caring. It's such a gift! Thank you all for celebrating with me! Right now, I'm tucked in bed with my 5 year old, at the hospital hotel (where my preemie baby, Indi, is staying in the NICU), and I have an "illegal" bottle of wine at the bedside. Thank God.  :-)  My husband is down in Indi's room getting some daddy-baby time in... And all is SO right in the world. 

    Ziggypop and Novagirl, thank you both for taking the risk to give me "advice." When I read your posts, I thought to myself... That's true! My situation IS crazy! It would be NORMAL for a person in my situation to COMPLETELY lose their shit (pardon the expression). I think I sort of forgot how insane this all has been... (Preemie baby born with three major birth defects, all requiring extensive care and surgery, all while contemplating the quick end to my life due to cancer...) WHOA. Slow down, honey. Right?

    Ironically, I was on an anti-anxiety for many months after diagnosis and weened myself off them this past fall. Hmmm... I am going to keep reading the words of wisdom you've all shared with me. (It's one thing for me to hear from my family that I should stop worrying and consider letting go of my fear - and an entirely DIFFERENT thing for me to hear it from other women who know EXACTLY what I am up against because they've been there! That is confronting. In the best way possible. 

    So, thank you for taking the time to write and share and encourage. Ziggypop, I am definitely taking to heart your words about making sure I also take care of myself. I am so ready for that - and see this experience as a kick in the butt to make that happen. Thank you, thank you.

    Much love to you all - and Happy Valentine's Day! 

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  • KSteve
    KSteve Member Posts: 486
    edited February 2014

    Esmeralda - I went out of town this afternoon so this was the first chance to log in and I was so relieved to hear your news!  Made my day :)   Enjoy the love of your family and smile lots. Don't beat yourself up about being so scared. It's natural. Now relax and focus on yourself and those around you.

    Hugs,

    Kathy

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  • bobogirl
    bobogirl Member Posts: 2,777
    edited February 2014

    Hooray Esmerelda!  Hooray!  

    A little Ativan still will not hurt as you calm down :)  We cannot be expected to absorb these giant stressors and just keep going with no impact.  Yoga, maybe a run, hot bath, cup of tea, pedicure!  Go go go and have a 'me-time' party!  I just wish we could all be there to have a party with you. 

    Kisses to your babies.

    XXXX Bobogirl

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