Need To Hear From Others That Have Had this Happen....

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Curlylocks
Curlylocks Member Posts: 1,060
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

I am a 6.5 year survivor of stage IIb, grade III, 4cm tumour with 3 positive lymph nodes, er/pr+,her- (diagnosed at age 41)

My treatment was a lumpectomy with clean margins, 6 months of chemo, radiation, Aridmex for 5 years and removal of ovaries.

I went for my followup mamogram last Friday and noticed the hospital's phone number on my phone when I came home last night but no message.  My heart sank as I knew that something must have showed up as it was so soon after my tests.

I had a horrendous sleep last night wondering what the hell was going on....called the hospital this morning and they said "oh yah"...we have a cone view mamogram scheduled for you on April 4 due to an abnormal area seen on my mamogram.  I freaked!  Like when in the hell were they planning on telling me about this issue and that I had this appointment...I called them.  To make matters worse my own doctor is on vacation this week.  I told them that next Wednesday was too far away and I needed an appointment sooner due to all the additional stress in my life right now, so the girl talked to her supervisor and got me an appointment for 1:00 pm. tomorrow.

The timing of this couldnt have come at a worse time...my youngest sister who is also a bc survivor of 1.5 years was rediagnosed with Stage 4 metastic cancer that has spread to her bones.  She just started treatment this week.

I left work as I cant concentrate and am a basket case right now. On my way home I stopped off at the hospital at the oncology clinic to ask for a copy of my mamogram report and they told me that they cant give it to me, only the doctor can.  I was so upset and furious...do they not understand how difficult the past few weeks have been with my sister's diagnosis (i explained this to them, she is at the same cancer center).  The girl said she would talk to my oncologist and see if she could get me an appointment after my test tomorrow for Friday to discuss results and next steps.  She called back and said she couldnt get me in until Monday at 12:00 p.m. (so I have to the whole weekened to worry about this). 

I cant believe this is happening...I so hate what cancer has done to me and my family!  

 Feels like the other shoe has dropped...

 Michele

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  • gramamuses
    gramamuses Member Posts: 633
    edited March 2012

    (((((hugs)))) and hope it's nothing much.  Seems you've been through enough.  Making you wait sems so heartless.  I am waiting too. 

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2012

    Oh Curlylocks, it's too bad that you're having to deal with this waiting on top of everything else you're handling! Great work advocating for yourself, and getting an earlier appointment. We're here to support you!

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  • raffomimi
    raffomimi Member Posts: 96
    edited March 2012

    Curlylocks,

    Hugs to you right now all the way from Ireland. We will all keep you company this weekend until you have your appointment. We are all here to support you and you did really well to bump up your appointment sooner. I am sorry to hear what is happening to your sister. Much hugs .....

    Blessings

    Maria 

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  • gsg
    gsg Member Posts: 3,386
    edited March 2012

    Hey, Michelle!  I remember you from your picture.  You and I posted together 6 years ago.  I just wanted to say I'm so sorry about this additional stress.  Can you get any Ativan to get you through the weekend?  Very sorry about your sister's diagnosis.

     I've delayed putting off my mammo this month (I know!  Bad move!) but have too much bad stuff happening in my life as well.  My mom is nearing the end of her journey with pancreatic cancer, my son just broke his back in another country, and my very close aunt just got diagnosed with breast cancer...started chemo today.  Decided another month won't matter if there's something there.  I just can't face anything new right now.

     Wishing you good news and your sister much success in getting to NED with her recurrence.

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  • momof3boys
    momof3boys Member Posts: 896
    edited March 2012

    Curlylocks... Hugs and prayers going out to you. I completely understand your anxiety and my stomach drops every time I see a Drs phone number come up on my phone. We will wait with you.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2012

    Oh, Michele, I'm so sorry you're going through this.  Can you possibly call your onc's office yourself, and see if someone can reschedule you for late tomorrow afternoon?  They probably want to be sure they have the results in writing when they see you, but it wouldn't hurt to ask.  (((Hugs))) and prayers for both you and your sister.    Deanna

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  • KittyKitty
    KittyKitty Member Posts: 150
    edited March 2012

    Hi, Curlylocks,

    It seems that the one calling you back for the second appointment should have been the radiologist, in my opinion, or at least someone who could offer an explanation. To have the secretary call back with the need for a second appointment like that seems wrong, imo, but I suspect some places do that.

    If their radiologist could explain this to you, at your next appointment, that would seem more professional, than having you wait over the weekend to see your doctor.

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  • SandyInNJ63
    SandyInNJ63 Member Posts: 104
    edited March 2012

    I have NEVER been told I cannot have a copy of my mammogram report, or any report for that matter.  I usually get my tests done at my area hospital and a few days later, I go to the radiology department of that hospital, simpy ask for a copy of the report, and in minutes I am given it without any problem.  I ALWAYS get copies of my reports, usually even ahead of my doctor.  In fact, I had the results of my recent PET scan in my hands before I saw the doctor, but was too afraid to open it and read it.

    The report is yours, they have no right to hold it from you.  I'm not clear on whether the place you went to pick up the report was the same place in which you had the mammogram done, or if it was your doctors office.  If it was a doctors office, I can understand what they told you, but if you go directly to the facility in which you had the mammogram done, they have to give it to you.

    I'm so sorry you are going through this.

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  • SandyInNj
    SandyInNj Member Posts: 48
    edited March 2012

    (Oops, I have two different screen names - I think I had created the other one because I had difficulty accessing my original one years back, but have been posting under this one lately, so I deleted the other post)  anyway...

    I have NEVER been told I cannot have a copy of my mammogram report, or any report for that matter.  I usually get my tests done at my area hospital and a few days later, I go to the radiology department of that hospital, simpy ask for a copy of the report, and in minutes I am given it without any problem.  I ALWAYS get copies of my reports, usually even ahead of my doctor.  In fact, I had the results of my recent PET scan in my hands before I saw the doctor, but was too afraid to open it and read it.

    The report is yours, they have no right to hold it from you.  I'm not clear on whether the place you went to pick up the report was the same place in which you had the mammogram done, or if it was your doctors office.  If it was a doctors office, I can understand what they told you, but if you go directly to the facility in which you had the mammogram done, they have to give it to you.

    I'm so sorry you are going through this.

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  • Curlylocks
    Curlylocks Member Posts: 1,060
    edited March 2012

    Thanks ladies for all your support....I so desperately need it right now.

     Gsg - I do remember you well, I am sorry that you are dealing with so much right now..

    My mamogram was done in the same hospital that the oncologist office is located.  The problem is I was released
    from the oncology practice last April to my GP's care after 5.5 years.  So technically I am no longer a patient of the practice but if I had problems can still come back. I went to the front desk of the oncology office and explained my situation (my sister is in the same practice, so the receptionist knows the stress I am under).  Their practice is they cannot give out copies of any reports to the patient, the doctor has to do this (rules are a little different in Canada than the U.S).  I begged for an appointment for Friday after my cone view mamo tomorrow but he has no space, Monday was the earliest.  It was like a zoo in the oncology office today...very sad that so many are fighting cancer right now.

     I was so freaked out today that I didnt even ask which breast was affected, I guess I will find out tomorrow when I go for test.  I will ask diagnostic imagining if they can give me a copy.

    Its going to be an extremely long weekend.  My biggest stress is trying to act normal around my family whom I normally see everyday as my parents and sister live around the corner from work and I go there everyday for lunch.  I made up an excuse for today that I didnt go to work as I didnt sleep well last night and then another one for tomorrow as I have my appt.  I hate lying to them but cant say anything until I have a definitive diagnosis....this is so hard with what is going on right now with my sister.  My dad is extremely upset and not coping well with my sister's new diagnosis, I can only imagine if I have to add to the mix....not good:(

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited March 2012

    Yes, I had the same thing happen to me.  And, it turned out to be nothing.  I had to go in for a spot mammogram and sonogram because they saw an area of irregular density or something - I don't remember now what the wording was.   I was freaked too but it turned out to be one cyst on top of the other giving an odd shadow.

    Keep in mind that these machines are still crude, with lots of false positives, and with your history they are NOT taking any chances.  Anything unusual they see, they are going to call you in for.  You have aged six years since your cancer and so have your breasts - they change.

    The good news is they got me in quick and I got the benign results very quick.  They all knew how worried I would be.

    I know you are worried but try to calm down.  Like our moms used to say, "Don't borrow trouble."  You don't have to worry about how your family is going to "take it" until there is actually an "it" and a call-back does not mean you have cancer.  

    With your history and with your sister's experience, it's not a surprise that you are upset!  I'm glad they fit you in quick. 

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  • Curlylocks
    Curlylocks Member Posts: 1,060
    edited March 2012

    Hi Ladies,

    I am "Officially" out of the Waiting Room.  I had my cone view mamogram today (4 views), 2nd different sets, they had me wait...came back and said we need an ultrasound.  They did an ultrasound of my scar tissue on my affected breast....waited some more and then the radiologist came into the room giving me an all clear.

    She said the reason for the recall was the mamogram last Friday showed some tissue that looked different than previous mamos.  They rolled my breast tissue in different directions (hurt like hell) and took pictures of that with ultrasound to be doubly sure.

    I thanked the radiologist for being so thoughtful to come in and speak with me (that is not normal here in Canada) and ease my mind.  I was told I could cancel my oncologist appointment for Monday as they have cleared me for another year.

     So relieved tonight!!!!

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  • SandyInNj
    SandyInNj Member Posts: 48
    edited March 2012

    Love hearing good news!!

    That's fantastic Laughing

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  • annettek
    annettek Member Posts: 1,640
    edited March 2012

    THAT IS THE BEST NEWS I HAVE HEARD ALL WEEK!!!! So happy for you my friend...and strength to your sister.

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  • FilterLady
    FilterLady Member Posts: 407
    edited March 2012

    Curlylocks....I'm doing the happy dance for you!  That is wonderful news.  You and your family are in my thoughts and prayers.

    Have a great weekend!Laughing

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  • FilterLady
    FilterLady Member Posts: 407
    edited March 2012

    gsg....bless your heart.  I'm praying for you and your family. 

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  • SAMayoFL
    SAMayoFL Member Posts: 958
    edited March 2012

    Michelle,

    HOORAY!!!  I am so happy to hear you have the all clear.  I am really sorry to hear about your sister though.  Cancer really stinks.  I wish you all the best!

    Susan

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  • raffomimi
    raffomimi Member Posts: 96
    edited March 2012

    Delighted for you. Loads of hugs and blessings Cool

    Maria 

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