I need help-got the dreaded call yesterday
Hello everyone,
I am not sure where to post this. Some background. I have been having pain in the ribs for a couple of months which doctors kept saying was cotcochondrotis. Saw my onc yesterday and said she could not rule out mets. I have also been having a low grade fever for the last 5-10 days.My onc said lets do an MRI and if I wanted I could wait for a few weeks to see if my pain got better. She also ordered some blood work.
Then she called last night that my liver enzymes were through the roof (all in the 140s) and that combined with my rib pain and fever she felt that it was most likely bone and liver mets. My onc is always very positive and she was super concerned on the phone and kept saying how sorry she was to have to tell me this. The combination of symtoms points to mets. I have a CT of chest/abdomen and liver for tomorrow and a PET for Monday. I am shell shocked. It is not a surprise--I expected this to happen but hoped that it would not. It was so hard to tell my parents and dh yesterday. I have two little kids and have not told them yet. I wish I could speak with someone. I feel like going to sleep and not waking up to this nightmare. I lack the strenght of all the ladies in the stage IV board. I am not afraid of death but sad that I will not be able to watch them grow. I am sad that I am causing so much pain to my friends and family. I just turned 40 and this seems so early to go. My dh refuses to accept anything till the PET says so but I have accepted the worst and am not counting on any miracles. There could be no other explanation for my liver enzymes to be high along with rib pain and fever. I don't know what I should do next.
Comments
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Sorry that you are going through this
( Is your doctor ordering a bone scan as well? Sometimes PET scans show some uptake on the bones that turn out to be benign or positive after a bone scan.
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No--she did not order a bone scan. I will email and ask her. Thanks
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Hi Formy:
I had a bone scan yesterday....showed 2 ribs that look off, so I am having an abdominal CT Monday. Oddly my tumor markers are fine....so who knows, but damn, not the day that I was hoping to have either. I will be thinking of you.
Mimi
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hold on now.. take the proverbial deep breath.. and please don't count on the worst thing happening.. I always do.. and often am wrong.
Chances are your treatments will work for a long time. Sorry to hear you've had bad news tho.
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Thankyou ladies Is there any chance my liver enzymes could be due to taking ibuporfen and benadrl that night before? I know probably not--but I am desperately grasping at straws here.
Mimi-goodluck to you
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I don't believe that liver enzymes in the 140's are that high. I hope they find something other than BC.
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formygirls, I'm sorry, but I don't know the answer to your question. It seems like it would be a possibility. I hope you are able to get your scan results soon and that the results are NOT mets. In the meantime, my thoughts are with you. I hope you can "speak with someone" as you mentioned you want to do. My oncologist had a someone for me to talk to, perhaps yours does, too. This is so hard, and so much to deal with. I wish I could take this away from you. Hugs, G.
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I just sent you a PM.
(((((((hugs))))))))
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So sorry to hear you are going through this. I hope that the scans prove your onc wrong. But if not, don't give up hope. There are many women who have a good long run at stage IV, some even getting back to NED with treatment. Crossing everything for you and sending strength and positive energy to get you through the days ahead, Angelfalls xx
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Take a deep breath. Your DH is doing what mine did through all of the diagnosis and testing...waiting to worry. That is a GOOD thing.
I was diagnosed with BC basically from a CT scan for side pain (my nodes glowed). I never did a liver enzyme test, but the pain I had was NOT mets. I don't want to give you false hope, but that was my experience.
I promise you that the worst anxiety I ever had was waiting for PET results. But whatever the outcome, you will deal with it. You are stronger than you can even imagine, and when you don't feel it, ask others for strength. We are here. Sending hugs and good thoughts
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I had my CAT scan this morning. Should know the damage later today. waiting for the call.
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Fingers crossed for good news. G.
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Hanging in there with you.
Love n hugs. Chrissy
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Chrissy,
Just got the call. I have mets everywhere
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How I wish I were with you to give you a giant hug, hold your hand..... I'm sending you courage, strength and hope through cyberworld instead. With a heavy heart tonight, G.
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Formygirls
Have a look at the link below. Not perfect but very inspiring.
http://community.breastcancer.org/forum/8/topic/768161
Alicethecat
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Hang in there baby...I have mets pretty much all over but all are tiny sprinkles with only a couple of measurable (still tiny) spots. No large tumors so treatment is very effective and there are soooo many that I acheived stable with bone mets for 4 months when a microburst exploded in my abdominal cavity, digging in to the abdominal wall and now it is pretty much everywhere in a spot here on the liver, a spot on the lung and the bone mets has sprinkled itself all over.
Abraxane did not work so I am on Xeloda/Avastin/Xgeva/Aresep and xanan, percocets and effexsor - my tumor markers are dropping and may be headed back to stable again. This is 2 1/2 years after the first dx of bone mets. Don't put yourself in the grave - I did that too and found that I really DID have the strength - you will too, I promise...keep coming back and the uplifting and support you will get from here will infect you through and through before you know it and you will be captaining you own ship and guiding your own care and become very outspoken about what you want and not just following what the onc's say.
So sorry this is happenig to you but we are here and use us up!
Many hugs...
LowRider
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Im so sorry formygirls that you got this news. As lowrider said, there are lots of treatments. Hope your meeting with onc is soon and you you get your treatment plan sorted out so you know what happens next. You can do it....you will do it. Wish i could give you a hug too x
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Take the time to process the news-it always seems the worst right after you hear it. I am so sorry this has happened to you.
There are lots of treatment options-some easier than others-but they will find something that will help you get going in the right direction. You don't have a choice-your girls need you. You WILL be able to do this. Ther are lots of help and support in the Stage IV threads. Someon over there always has an answer for whatever is bugging you. they have been a huge help to me.
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So sorry to hear your news. Sending strength, positive energy and lots of hugs as you take this next step, Angelfalls xx
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Oh no. I am so sorry to hear this. Take heart from these ladies who have been there. Sending you hugs and prayers and good thoughts.
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formygirls, well the news does suck. So sorry for what you are going through. With all due respect for those who've posted about being strong, one post I read on another thread said "you don't have to be strong, you just have to show up." Sometimes you just try to get through the day, sometimes just get through the hour, sometimes you just take it a minute at a time. Please hang in there. Keeping you lifted in prayer.
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FMG: I really really feel for you. It's so hard to stay positive with so much uncertainty around you. I hope whatever treatment plan is put in place for you brings you to NED, as has happened for so many on these boards. I went in for my 3-weekly Herceptin yesterday and asked to see whoever was covering Oncology, as last week my RO, looking at my latest scan, had said "Either its inflammation from infection, or it's cancer." And she didn't seem convinced it was inflammation... DH and I cried all the way home. Anyway, back to yesterday. Nurse called into Oncology while I was in infusion, was told, of course you can go and see someone. PA came out and talked to me, offered to give me my report. Disappeared for a long time and then reappeared and asked me to come into the office. She basically said she could see why the RO had said what she had. She wouldn't discuss it further, but told me my onc would be in shortly. Deep breath. Read report. See "results concerning for metastases of the thorax" on the report. Stop breathing. Deep breath. Finally the onc came in and took 45 mins to go through the report with me, explaining that the radiologists reading the film didn't know I'd had radiation. After talking with them, all were in agreement changes seen in my lung could have been caused by the radiation. Especially as there is no sign of any speck of cancer anywhere else, and there aren't a bunch of nodules growing in my lung. So we'll rescan at the end of February. He said radiation changes can last for months. Then he said, "Even if the worst case scenario occurred," we have tons of treatments for you. It just shows me how hard it is to work in this field - so many different variables. Anyway, I got another prescription for Ativan, and I intend to use it. This is all so hard for us.
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Thank you everyone. I have also posted on the Stage IV boards. I am in a daze right now. One minute I am ready to fight and the second minute I cry as I know the end could come very soon as my liver is almost gone. I spent this morning discussing morbid things like ins, funerals, who will pick up the kids from school, how we do laundry:), my passwords etc.
I thank you all for your uplifting thoughts and prayers. Whatever will be, will be...
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Formygirls, I'm sorry that you got bad news, it sucks. I'm glad you went over to the stage IV boards. We are in this together and will always be here for you. I know it's alot to process. I was diagnosed with mets in May after 7 1/2 years out. It turned my world upside down. You don't have to be strong everyday. You can be angry, sad all you want. It's a grieving process, I'm just starting now to get my head around this. Once you have your treatment plan in place you can move forward. And you will get through this, because that's all we can do. I have liver and bone mets and still there is hope. I'm thinking of you this weekend, try not to dwell on morbid thoughts as hard as I know it is. Good luck to you and keep coming back. You will get lots of info from the stage IV gals and most of all remember that we are always here for you.
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Dear Formy so sorry you are going through this. Its what we all fear.We are here for you to help you anyway we can. There is a lot of treatments that can help you fight this terrible diease. Hopefull6y you will feel beter when you have a treatment plan to in place. Hugs to you.
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formygirls, I'm sorry for your news. Having mets isn't so bad. At first the news is devastating but it can be treated and you can live a fairly normal life with cancer mets. I was originally diagnosed March, 1999 at Stage IIA. Four years later to the exact same month, I found a lump under my other arm and found out that it was bc and it had spread to my lungs. It was devastating but I figured I would just fight. Three months later I found out it had spread all over my bones, which would explain the terrible back pain I was having. It's been nine years that I've been stage IV and at this point my cancer is in my lungs, liver bones and skin. My tumors are still small and I still fight every day to live my life. I've been unable to have children because of this but my bff has three kids I adore and love like my own. They are the reason I fight. I want to see them grow up as much as possible. Yes there are days I lay on the couch crying cuz chemo made me feel like crap again but then I think of all of the things I still want to do in my life and I keep on fighting. I help other newly diagnosed women with mets too. You can do this. Be positive. Your attitude means alot during your fight and is very important. If you need to talk, please feel free to contact me. Good luck and blessings to you and your family!!!
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Edited by BCO Mods to remove personal email address. We strongly recommend that members only exchange personal information in private messages, with those they know and trust.
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formygirls, I'm so very sorry to read about your news.
I am also newly dx with mets. And I'm near your age (36).
And I totally know what you mean when you say that you had the strength to get this far but feel so much like just sleeping now, etc. What you wrote describes much how i feel too. I've been strong all year through tx, but now my thought was : "I don't know if I have it to fight this".
But some wise women on another board I go to said to give myself at least 3 days to process it all. So I'm trying that.
Also I really enjoyed what LowRider wrote to you: that's very helpful to hear for me as well. I think we will somehow find the strength, once we get passed this initial shock. And also that quote about "you do have to show up" is great---it got me through much of this year. We don't always have to be strong. In fact acknowledging our fears, sadness, etc. is its own kind of strength--maybe true strength.
take care. sneding you giant, gentle hugs.
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