Well as life will have it, of fate, or whatever, I had my latest cat/PET scan on Monday and the Cancer Institutes phone lines have been down and are still down today. This means I have not been able to get my official results! Thankfully I had the results also faxed to my primary doctor who just called to tell me it's a mixed bag of results. Oh great, and he can't really tell me anything else. Or will not. So here I it with the news from him that there are new "Suspicious places" and it looks as if some of my other spots might be improving......
YIKES!!!!!!!! So now what? I have called my husband and he is in another town and couldn't really talk, my onc can't be reached, my healer is out and I'm alone just wanting to scream and cry and RAGE!
Sigh. So today, mz hopeful is not so hopeful.......
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bad news.....
- By DragonflyDream
- Posted August 13, 2008 at 2:12 pm · 36 replies
- Shared with the public
Explore topics in this journal entry and replies:
Cancer Hysterectomy Breast cancer Ovarian cancer Anxiety Pain Lung cancer Stress
36 replies
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- Newest first
- By BJW
- Posted August 13, 2008 at 2:32 pm
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Hi---YIKES is right !!! Could you go to your onc office to speak to him rather than wait for the phone lines to be fixed? Wish I had some magic words to amke you feel better. But I'm sure wiwth you in spirit. Bev.
- By stephanie410
- Posted August 13, 2008 at 2:53 pm
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I am with you, and would certainly be feeling exactly the same way. Perhaps if you prayed or meditated (whichever works for you), did some relaxation exercises, had a cup of hot tea and a warm bath, or got out and took a brisk walk, you could hold yourself together until your other lifelines open up.
I watched a Primetime interview after Professor Randy Pausch passed away a couple weeks ago, and his wife talked about dealing with his cancer and in their less hopeful, productive moments repeating to herself, "not helpful..." I've been trying to do that when I get sucked down.
I'm sorry for your news, but all is not lost. My new motto is...it's a setback, not a sentence.
Take good care.
--Stephanie
- By MOM20CATS
- Posted August 13, 2008 at 2:56 pm
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Hi: I can be considered a real" pain "sometimes. I would get myself over to my primary doctor and demand that he give you the report to read because "a mixed bag of results" means nothing to you and you cant find it in a medical dictionary...M.C.
- By Khari
- Posted August 13, 2008 at 3:32 pm
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Yea waiting is the worst. You can also get a copy of your actual films and the radiologist's report by just asking for a copy from where ever you had them done--tell them you are taking them for a second opinion. I always get copies, because once (a long time ago and for something else) they lost them.
Bad thing is if you don't know what you are looking at or reading it could make things worse.
Good luck and try to think of positive things.
Khari
- By Ahaha
- Posted August 13, 2008 at 4:16 pm
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Recently from my oncologists appointment secretary, on request we got a computer print-out of the INTERPRETATION of the ct-mri and the bone scan. This is better than seeing the films, because it gives the radiologists interpretation -- where it has grown, where improved, etc. I don't know if you have the possibility to go there and request this. . . or whether they would provide it. But, it might be worth a try. It is your body.
- By LMR
- Posted August 13, 2008 at 4:50 pm
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How absolutely ridiculous that your internist would leave you hanging like that. "A mixed bag" can be interpreted a million ways and when it comes to our health, we tend to translate it into the worst possible scenario. While you are waiting for something to happen, try to concentrate on the 'other spots might be improving' part of the conversation. Waiting is the hardest part of any scan and I don't think doctors realize just how difficult and stressful it is. Stay strong, you'll get through this!
- By Sylvie
- Posted August 13, 2008 at 8:27 pm
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Hi, This is your new friend Sylvie. I am new to this site. Just want to say to hang in there. Waiting for information is extremely anxiety provoking and frightening. The not knowing has us think the worst. I sincerely hope you can get the clarity that you need so you can plan your next steps.......Take care and keep your head up.............Sylvie
- By candifleming
- Posted August 14, 2008 at 8:08 am
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Waiting is the hardest part, I would have someone to interpret the Pet scan to me. Keep pressure on your primary phis. and he will or find someone who will tell you. He didn't go to college for "Hodgepodge".
Take care and stay strong.
Candi
- By JoAnn06
- Posted August 14, 2008 at 8:17 am
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Listen to what everyone is saying on this thread and get those test results so you can have peace of mind. Waiting is oh-so stressful.
Concentrate on the positive narrative from your Dr until you get clarification on this "mixed bag of results".
Take it from one who knows.............the primary Dr and the oncologist sometimes have differing opinions. Thank goodness my oncologist saw a much brighter future!
JoAnn
"I don't know any other way to lead but by example."
--Don Shula
- By peggyr
- Posted August 14, 2008 at 8:27 am
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hi,
I have had news like that before in my five years of this latest round of diagnosis/treatment. It's maddening for sure.
I hope it helps that you see you are not alone, from the previous replies.
When I am not sure of results, I take a deep breath, and say ok, what do we do in the worst case... I get my mind around that.....and then I give thanks for the good news. This process may take a few hours or days. AND I do it by talking with good friends.
They may not be able to identify exactly with me but they can listen. I sometimes have to say,"This is a venting call, please just listen!"
For me, feeling isolated only adds to my anxiety and frustration and doesn't help me to use the brain I have to adjust to the situation and take action.
Am sending healing light your way!!
ps I love your affirmations!
peggyr
- By Veronique
- Posted August 14, 2008 at 8:44 am
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It can be anything. Do not worry untill you really got the precize result. Sometimes I think that doctors do not really feel what uncertantity means. I am almost the same shoes, I have to go to the check CT (after two monts) next week. I try not to think about it.
- By AJS
- Posted August 14, 2008 at 9:00 am
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Lots of sound advice from some really wise women yesterday. So how are you doing today?
I struggle constantly with being treated like I'm just another patient who needs to wait in line (even tho' intellectually I know I am).
When I've gotten particularly pro-active with my docs and/or their staff I may not win any popularity contests but I, more often than not, get the attention I'm needing.
I hope you're getting what you need today. My thoughts are very much with you.
Anita
- By goldi
- Posted August 14, 2008 at 11:38 am
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Dear DragonflyDream
You are a warrior and an optimistic person as I've learned from your e-mails .Please don't give up,wait and see I'm sure you'll get good news.I'm praying for you ,herw in Israel
Goldi
- By beebie
- Posted August 15, 2008 at 11:44 am
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hi,I read your note about waiting for the full results I hope the news wasnt too dismal. A mixed bag is just that, and it is can be hard to see what it all adds up to. Just know that you are not alone and there are women out there who keeping you in their thoughts. b
- By Thesweetmom
- Posted August 15, 2008 at 5:11 pm
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I'm glad you shared with us. Just remember, your journey is an unique one, and your positive attitude (which has been evident in your posts) is also an important treatment. Keep that positive attitude -- the "mixed bag" may mean different treatment options, but they, along with your positive attitude, are meant to lead you to wellness. I'm thinking about you -- be well!
- By DragonflyDream
- Posted August 16, 2008 at 9:29 am
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Thanks to all who have responded! May I quote you for our "Messages of Hope"???
~Alice
Lynn Kohlman writes, “cancer has been an unexpected gift that has brought with it dramatic change and transformation. . . . I never believed in my beauty as a model, but here I am, 57 years old, with a double mastectomy, hair fried from radiation, never feeling more beautiful! . . . I have gone inside out.”
- By peggyr
- Posted August 16, 2008 at 8:54 pm
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yes you can quote me! can't speak for anyone else...:-)
peggyr
- By Rock44
- Posted August 17, 2008 at 9:12 am
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You can't change the results right now anyway and look at it (whatever "IT" is ) as a new opportunity to become stronger, become more knowledgeable in the fight and to learn how strong you really are, thats all. Ok?
- By Second_Dance
- Posted August 17, 2008 at 1:31 pm
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Dear DragonfFly Dream,
Sorry you are anxious. I can't really add much to what the others have said but recognize the good advice they have given. Waiting is always one of the hardest parts of dealing with this disease. Be strong, Be hopeful and Be sure we do care.
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