I'am going CRAZY!!!

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited July 2010

    Frankie - MRI's are notorious for false positives. When I had my first one (breast) after I was Dx, the nurse said to me that stuff shows up on them all the time that turns out to be nothing, and for me not to panic if I got a call back. And I did get a call back, and no, it was nothing. That is why they need to review your films, and compare etc. They have to write the "concerning for mets" because they can't rule it out by just looking, but that doesn't mean at all that it is. So, please, do not lose hope!

     I agree with everyone that two weeks is too long to wait. Can you get a second opinion?? Are you being treated in Hamilton? Maybe you could get someone at PMH to see you sooner.

    Everyone is here for you.  Keep us updated.

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  • Frankie_
    Frankie_ Member Posts: 422
    edited July 2010

    Hi Ladies,

    Last night was extremely difficult. I am exhausted from this emotional distress. I sent an email to a family friend who I went to high school with and who is a Rad Onc at PMH in Toronto. I have been in touch with her since my dx and have kept her up to date. I sought out her advice as she has helped me along by consulting with her colleagues who are breast cancer Onc's. She has been valuable to me along this journey. 

    In one of my lasted discussions with my Onc when I pressed him for this MRI, he invited me at any time to seek a 2nd opinion as he was pretty confident that these 2 spots were not mets but likely to be degenerative in nature. He suggested that I didn't just go to a small cancer center but a larger and well-known cancer center similar to one that I am already attending. He said that if I were his wife he would have me go to "Sunny Brook" in Toronto as it is the best for breast cancer in this region. So I asked this family friend how to navigate the system to get the ball rolling for a 2nd opinion. My family will be on a camping trip all next week so I know that getting seen my a 2nd opinion will take some time anyway especially in Canada. I just want to get the facts and know one way or another if this has spread so that I can began to move on and learn to deal and cope the best way that I possibly can. I don't want to live in false hope I need to live in reality and hopefully find acceptance.

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  • Frankie_
    Frankie_ Member Posts: 422
    edited July 2010

    Thanks everyone!!! For your kind words, encouragement, hope, hugs and love!

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  • Frankie_
    Frankie_ Member Posts: 422
    edited July 2010

    I forgot to mention that when I spoke to the Nurse yesterday one of the first questions I asked was could'nt one of my Onc's colleagues meet with the Radiologist and review all the scans that have been done to date while my Onc is away and she said no that he would be the one that would do this. I know that this was some of your suggestions to me so the answer is no. I think that the Onc's are so overloaded with patients and that things work at a slower pace in Canada (Universal Health Care System).

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  • Summer38
    Summer38 Member Posts: 253
    edited July 2010

    Keeping you in my thoughts & prayers! {{{{{HUGS}}}}}

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  • clariceak
    clariceak Member Posts: 752
    edited July 2010
    Frankie - I'm so sorry you're going through this.  Please don't think that it is mets because of the language used.  There are so many false positives and it's may be the use of language by the particular report writer when suspicious is written as  "concerning for mets".  Of course, with our history every spot is potentially more serious and reports can reflect that..  My sister had be called in for rescans of suspicious liver spots twice during her first 2 years.  The docs were just being extra careful with her and she's fine.  You will be too.
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  • jenn3
    jenn3 Member Posts: 3,316
    edited July 2010

    Frankie - Just wanted you to know I was thinking about you. 

    ((((HUGS))))

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2010

    THE STRESS IS GONNA GET US...NOT THE BREAST CANCER...RELAX...BREATHE.IM PRAYIN FOR YOU...SENDING GENTLE HUGS YOUR WAY...STAY STRONG SISTER...FEEL THE LOVE.

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  • paml
    paml Member Posts: 81
    edited July 2010
    Thinking about you Frankie! Hang in there!  The waiting game is a rough one. Im with Grannydukes! I think the stress is gonna get us!
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  • ssupers
    ssupers Member Posts: 4
    edited July 2010

    I too am always crying and shaking. I was just diagnosed with IBC yesterday. At times it's hard to even breath or eat. I also don't know much about my BC. All I know is he put a rush on it and I'm seeing an oncologist and starting chemo next week then radiation then breast removal. Hoping its not spread all over the place but I have no idea. My husband thought about a second opinion. I said no. I don't think we should waste another week before chemo. I have 3 girls. 28, 24 and 21. I want to live!! This is just unbelievable. Hang in there. I'm going to just take this a day at a time! Thinking of you. Be strong and positive.

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2010

    ssupers...i hope the pros that come on here can give you some answers.im kinda new but i was always told and didnt listen always always get a 2nd opinion...dont just listen to me...see what others have to say.in the end it is up to you...just know that we are here for you 24/7 and please dont stress...the stress will kill us before the bc...sending you gentle hugs.

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  • changes
    changes Member Posts: 622
    edited July 2010

    Frankie - hang in there! My thoughts and prayers are with you. Waiting and not knowing is the worst. Once you know something, you can find a way to deal with it, but the dread and fear is often harder to cope with than the reality.

     SSupers - I'm sorry to hear about your diagnosis. The first few days are surreal. Try to have someone with you at appointments if you can - it's really hard to process all the information when you are still dealing with the shock of the diagnosis. The worst part is really right after the diagnosis - when you don't know what you're dealing with, don't know what's going to happen, and you fear the worst. God bless you,

    Karen

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2010

    Frankie -

    Even though I haven't written anything I've been following your posts and been thinking of you.  Yesterday as we were runnning errands you were on my mind.  I just wish I could give you a real hug.  Waiting on scans is so rough.  Especially when it involves coordinating doctor schedules.  Its just another added stress level.

    Please keep positive.  Keep living your life through this waiting.  Try to take the stand that you are NED and these tests are just to prove it to the doctors.  Big cyberhug!!!!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited July 2010

    supers - I am so sorry to that you are going through this, waiting is hard.  I know it all seems overwhelming right now so it is important to bring someone with you to the dr so that they can hear or understand what is being said.  (((HUGS))))

    Frankie - thinking of you.

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited July 2010

    Damn it Frankie,

    I would feel EXACTLY the way you are right now.  Nothing like having to extend your anxiety longer than to have the doc out of town---GRRRR!  Do you have something to take for the anxiety?  If you don't do ask for something.  You shouldn't have to suffer in the meanwhile.

    I will continue to pray for you and a positive outcome!

    Love,

    Sharon

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  • Bugs
    Bugs Member Posts: 1,719
    edited July 2010

    Frankie,

    Just checking in to see how you are doing this weekend.

    Ssupers,

    I'm sorry you had to join us.  It's hard to believe right now, but once you get a treatment plan in place you will feel better about things.  Come here often...we get it.  You may want to "start a new thread" in the stage 3 forum to introduce yourself.  There is also an IBC forum (if you haven't already found it).

    Hugs!

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  • Frankie_
    Frankie_ Member Posts: 422
    edited July 2010

    Hi Ladies,

    I can't thank each and everyone of you -enough...I really feel ALL of your love and care!!!

    Firstly, ssupers-  I am so sorry that you have joined us. There are so many wonderful ladies here that we help you get through this. I think that Bugs offered some good suggestions.

    I have been pretty busy the past day or so getting ready for our camping trip. We leave tomorrow and will be gone for a week. I am hoping that this will be a nice distraction from my concerns and worries. I haven't been able to get a prescription for anything to calm my nerves or to take the edge off as it would require that I see my Onc or GP. I won't be able to see my Onc for at least 2 weeks and I have an app't with my GP on July 29th (for a second) follow-up pap test because in January when i had my annual physical my pap test came back "atypical". I have never had that happened before and I am hoping that it was the result of undergoing chemo (at the same time). God help me if it turns out to be something serious. Anyway, I will ask my GP to give me an antianxiety prescription-as I need to stop playing "Wonder Woman"-love that character! In the meantime, the reality is "there's not anything i can do anyways" except to "live in the here and now" and live life! I have a Type A personality-and throw in a perfectionist and some control issues and WHAM...You got a "cat that crawled into a bag" can you say TROUBLE!!! LOL-Get me out of this CRAP-NOW!!!! I always have to have a plan! It helps me to regain some contol -even if it is only an illusion!!!

    When I see my GP on the 29th I  will provide her with the 2nd opionion Cancer Center (referal form) to complete and fax out-so that I can get the ball rolling as my Onc is on holidays and I don't want to have to wait for him to get the ball rolling as I don't even have my next app't schedule yet with him and I know that he will still have to arrange to meet with the Radiologist to review ALL my scans to date to get the Radiologist thoughts (meaning if this could be mets or not).

    I know that I am jumping the gun as I haven't been given an "official pass to Stage 1V" All I keep hearing is the phrase "concerning of mets". Here are some Q's that I plan to ask my Onc & 2nd opionion Onc

    1) Can a biopsy be done to determine if these 2 spots are mets? -I think that this will be the only way to truly confirm.

    2) If found to be mets, could I have progressed during treatment OR could I have had mets all along from the get go? -Is my current treatment NOT working? -If progression has indeed occurred? Should we be changing treatments or adding other treatments?Think a 2nd opionion would be beneficial to review ALL scans to date to see if there might have been something there that wasn't seen by current Radiologist.

    3) Should I be getting an abdominal CT Scan to re look at my liver, etc-have not had one since Nov-at time of staging.-Think that I will be pushing for this.

    Can any of you think of any other Q's that I might ask? Any suggestions or thoughts would be appreciated!

    Frankie

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  • kimber3006
    kimber3006 Member Posts: 586
    edited July 2010

    Frankie - Regarding the atypical pap results - It was time for mine as I was finishing up chemo but my onc said to wait a MINIMUM of 2 months, as the chemo would likely mess with my results.  I'm sure the next one will be fine.  Hope you have a wonderful camping trip.  As always, you're in my prayers.

    ssupers - Sorry you had to join us.  As the others said, you're in the worst of it.  Once you have a plan of attack, you'll feel so much better.  I didn't get a second opinion, and while I think I still got excellent treatment, it would be extra reassurance to know that another oncologist felt that was the best plan for my particular situation as well.  Every little thing that can put our minds at ease is worth so much. 

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  • Pure
    Pure Member Posts: 1,796
    edited July 2010

    My oncologist said the same thing-hold off on pap for a few months. She felt the chemo affected the results.

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2010

    fRANKIE...I HOPE YOU WENT ON YOUR CAMPING TRIP LEAVING EVERYTHING BEHIND EXCEPT WHAT YOU NEEDED FOR YOUR VACATIONS.

    SSUPERS.SORRY IS ALL I CAN SAY TO YOU...I AM DRAINED FROM THIS NIGHTMARE WE ARE ALL HAVING.STAY STRONG.THE SISTERS ARE HERE TO HELP YOU 24/7.WE LOVE AND UNDERSTAND ALL THESE UGLY FEELINGS...THE BEGINING IS SOOOOO HARD. WE ARE HERE.IM SENDING YOU A BIG HUG.CAN YOU FEEL IT? GOD BLESS.

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