Talk me down off the ledge

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Stage III Breast Cancer
Talk me down off the ledge
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Yesterday I had a mammogram and today they have asked for me to come in for an MRI.  You all know what is going through my mind.......

    But I need to be rational about this..... When I was first Dx last year on my left, the doc found a lump on my right side which she thought was nothing, but as I was being dx on the left side, she wanted to follow up on right. 

    I had an MRI which was not conclusive, so she asked for a biopsy.  The doc had a lot of trouble with the biopsy, difficult to pierce the "lump" etc.  The results came back with wierd stuff but no cancer and no atypical cells.  Well, she asked me to follow up in 6 months with an MRI, which I did.  Unfortunately, that MRI was done during my (last) period so it was inconclusive. So, again she asked for another 6 month MRI follow up.   When I booked the next 6 month MRI, the breast imaging centre said they would not do an MRI now unless I did a mammogram first and then they would decide if  I needed an MRI.  I went yesterday for the mammogram and today they called saying they wanted to schedule the MRI.  Obviously they saw something that concerned them.

    I have a call in to my nurse, but, I need a shoulder to lean on right now.  Its good in that they didn't ask for an immeadiate biopsy, but bad in that they must have seen something.....

    It doesnt help that this is all happening during the same time as last year when I was diagnosed and I have been having such a tough time as I remember each step I went through last year.

    Hold my hand... talk some sense into me.

    Jacqui

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited December 2009

    Jacqui - try and remember that you are now deemed to be "high risk", so anything that shows up would be followed up ASAP. As you say, if it was anything suspicious, you would be being biopsied, not MRI'ed.

    And, as you say, something fishy already turned up there, I bet they are just getting clarification that it is the same weird thing they saw before. 

    I had something show up on my original MRI on my "good" side. They biopsied it, and put one of those titanium chips in. I had a repeat MRI done in September and they said it was stable (ie no change) If you get another boipsy, get them to put a chip in so they know that the area they are looking at has already beeen biopsied, and they can compare the films.

    I know what you mean about this time of year! I have an ultrasound next week (1 year follow-up, yah, what fun!) It seemed so far away when i booked it, it has come around very fast.

    So, we will all be sitting right here with you. Let us know when you have a date for the MRI, and keep reminding yourself that in all probability it is probably nothing. (Yeah, I know, easy for me to say.)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    You are right Kerry,

    It is probably just a confirmation that they are seeing the same weird thing.  I had never had that breast mammogrammed before at Sunnybrook, so they wouldn't have any mammograms to compare against.  It always seems more rational when someone else digests the situation for you. 

    Are you having a breast or pelvic u/s?

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited December 2009

    Breast....

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  • pip57
    pip57 Member Posts: 12,401
    edited December 2009

    Yeah Jacqui, get off that ledge.  It is such a cold, windy day that you will just get blown off anyways.  

    As Kerry said, you are now high risk.  They won't let anything get by them now.  As my mom always told me, "don't try to find trouble, it will find you."  However,  I don't think she was referring to bc at the time.  I was such a 'curious' youngster!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    You are right Kerry,

    It is probably just a confirmation that they are seeing the same weird thing.  I had never had that breast mammogrammed before at Sunnybrook, so they wouldn't have any mammograms to compare against.  It always seems more rational when someone else digests the situation for you. 

    Are you having a breast or pelvic u/s?

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  • cbm
    cbm Member Posts: 475
    edited December 2009

    Just a thought--if she had trouble getting through to the "lump" and had to fish around, that may all now show up as scar tissue or architectural anomalies. 

    After I was already diagnosed via biopsy I had the usual PET and mri staging.  The mri turned up a hot spot--it turned out to be the site of an old needle biopsy from several years before.

    Warmest,

    Cathy

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  • Diana63
    Diana63 Member Posts: 773
    edited December 2009

    Jacqui, it is normal for them to look into anything unusual when you had prier bc dx, like my husband said during my scare he would be worried if they didn't check it out. I had a needle biopsy then they removed them during my recon, I had 3 lumps all B9. Just hold on and don't forget to breath, it is going to be fine. :)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Taking deep breaths.  You are right... lumpy area, previous biopsy, scar tissue, highly monitored... these are all good reasons to be asked to do an MRI.  Thanks for all the positive vibes.... I might let myself put one foot back inside and off the ledge.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Jacqui,  They are probably being cautious because of what happened this time last year.  Believe me I understand.  It was exactly this time last year that I had started to notice my lump and then went in for my annual check up and was diagnosed in January.  Great way to begin 2009.  Now I will be going back in January 2010 for my right breast annual and I will be freaking out about that too.  2009 turned out to be the year from hell for me.

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  • Let-It-Be
    Let-It-Be Member Posts: 325
    edited December 2009

    Jacqui, I'm right here with you. All these Toronto area girls! I went for my first mammo this morning (since the diagnosis) and I was trying not to be too freaked out as it was this time last year for me too.

    I went in aware that they will be going over everything with a fine tooth comb and ANY bit of abnormality would be addressed. We have a record as they say, so they are extra cautious.



    I'll be breathing deep for you over here in Oakville!

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  • hrf
    hrf Member Posts: 3,225
    edited December 2009

    Jacquie, we are all here with you. It is not uncommon to be called back and as others have already said and since it's your first one at Sunnybrook, they don't have old pictures to compare against. But it's normal to feel freaked out. Do you have a date yet for the mri? They are pretty good about getting them done quickly. Once we are in their "high risk" goup, nothing gets taken for granted. They will check you out thoroughly. From my experiences, when they found something suspicious on the mammo, then they did an u/s with a biopsy. Sounds to me like they are just doing a thorough checking and not necessarily looking for a bc confirmation at all.

    Let me know if you want to get together this weekend for a coffee - you can vent all you want.

    Just as an f y i, I got the results today of a biopsy I had 2 weeks ago on a new lump in my arm -- it was just a lump of old scar tissue.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited December 2009

    Like PIP said get off the ledge and get warmed up.  Because you are high risk they are being extra careful right now.  It could be the same junk as last time or scar tissue, but they have to check everything.  We're all here with you ((((HUGS))))). 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Dec 21 is my MRI date.  Thanks all for holding my hand, but please don't let go until I get the results back.  I knew you could talk me down.

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  • hrf
    hrf Member Posts: 3,225
    edited December 2009

    We will stay with you. Try to arrange to get a verbal report asap following the MRI. You want to have a wonderful carefree Christmas. I've done that at Sunnybrook - spoke to the radiologist who was reading the report ... arranged for her to speak to my doctor immediately and my doctor called me.....

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited December 2009

    Jackie i just climbed down from the ledge yesterday....mammo...MRI then core biopsies.

    All ok for me...hope the same for you!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Thanks maryanne

    You talked me down from the ledge when I was first diagnosed and I knew you could it again.  But I am starting to understand that there may be more visits over the years to this ledge so I will need to learn how to live on the edge!

    So happy for you getting the whole 9 yards and coming out B9! 

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2009

    Some good insight from the ladies who have been there.  I'm sending positive thoughts your way...

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  • Pure
    Pure Member Posts: 1,796
    edited December 2009

    Did you ask them if they saw something? That might help you feel better. An MRI is good thing b-c it's really the gold standad for watching your breast so if anything does show up they will catch it!!!!  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    I assume they saw something and that is why they want an MRI.  I have not been too impressed with MRIs as I had 2 pre-op and both missed my 6 large lymph nodes.  The person who called me to book the MRI after the mammo was just the booking clerk so she doesn't know anything. It doesn't seem right that they can just call you in for more tests with no explanation.

    Following a good pep talk with hrf, I have a plan now.  I will call the surgeon;s nurse and the onc's nurse on Monday and if I don't get a reply ( I had already left the surgeon;s nurse a message on Friday) I will just show up at the onc's clinic on Tuesday and ask to speak to her.  I am not impressed that 1) the booking clerk told me that I needed further tests and 2) the nurse does not call back.

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  • pip57
    pip57 Member Posts: 12,401
    edited December 2009

    Please tell them to not  leave you waiting over Christmas for the results of the MRI.  I know the paperwork has to go through the system but hopefully they will bypass some of that and call you ASAP. 

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited December 2009

    I know at North York General they only read the Breast MRI's on a Friday....so at least ask when it will be read. I think if it is sitting there unread I don't freak out as much, I can put it out of my mind. If they won't read it before Christmas, they can at least tell you that, so you don't jump every time the phone rings. .

    Who do you get the quickest action from? My Onc is fabulous at getting back to me immediately, my BS not so great.  Try and call whoever is likely to get back with some answers for you, and keep pestering them.

    Let us know how you get on.

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  • Gitane
    Gitane Member Posts: 1,885
    edited December 2009

    I like this plan.  It lets you do something besides sit around a freak out, and hopefully you'll get an answer about why the MRI?  Let's face it, our breasts are full of "stuff" and the imaging is not always able to identify what it is.  If a good person reads that MRI it's better than most imaging and will give you more information at least.  There is also the possibility of an MRI guided biopsy, which should be more successful than one guided by US.  Sorry you have to wait so long to get the MRI and get the answers you need.  Keep asking those questions!!!

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  • lassie11
    lassie11 Member Posts: 1,500
    edited December 2009

    I'm thinking of you too Jacqui - and know that hrf will have given you excellent advice. The waiting, the waiting and worrying are the hardest parts of all. I think that it is indeed the case that once we've been there, we get every test possible. The people who do them ought to remember how worrisome it is though and provide information immediately. I'll try to remember all this when it's my turn on the same ledge.

    Warm wishes.

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  • hrf
    hrf Member Posts: 3,225
    edited December 2009

    thisisme, that's a good plan. You deserve to have all the information the doctor has. We're all with you on this.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    &&&&& Major incoherent rant ahead&&&&&&&&&&&

    Nurse called tonight and she was just awful on the phone.  She starts with "first I don't give results on the phone, second the doctor doesnt give results on the phone but I can tell you that they didnt see any malignancy on your mammo, just a "little something they need to follow up on. ok dear" and  blah, blah, blah.  Anyway she was talking to me as if I was a five year old.  I asked her to stop talking to me as if I didnt understand and that obviously they must have seen something if they wanted to follow up with an MRI.  She kept saying "OK sweety" I finally said, no not ok, there is something on the mammogram and i dont know what it is.  then she said "the report says that they saw parenchymal enhancement likely related to her period"  I said " i havent had a period in 7 months, and the technologist noted that down in her report and further that sounds like you are reading what was said in my MRI from 6 months ago, not last weeks mammogram"  Anyway it just went from bad to worse.  So i said, if doc does not give report on the phone, then I want an appointment with her following the MRI.  She says that the doc is out of the office until Jan 5.  Well, then how was I supposed to get the results in a timely manner?  She said she would try and get another doc to review them with me.  I told her to not bother as i would try and get an appointment with my onc.  I sure hope my onc is around! ( all of this so far has been with the surgeon)

    This is only part of the story.  The first part is that  when doc ordered the MRI 6 months ago the booking clerk said they would only book a mammogram, I called this nurse and check that this is what the doc wanted as doc had ordered an MRI.  She "pretended" to speak to the doc about it and then confirmed that i had to go through the mammogram and wait to see what radiologist wanted.  I do not believe that she ever spoke with the doc.  But she did say to call her about 1 week after the mammogram to get results!  only to have her today say she never gives results over the phone. 

    Sorry for the stream of consciousness. I know it is pretty incoherent.  I guess good(ish) news is no malignancy seen, yet something that does need follow up.  I have one nurse left that has been reliable and able to get me answers quickly so I will try her and if that does not work, I will have to bypass the nurses, go straight to the docs.  I also have to come down off the roof and focus on the outcome of all this stress (hopefully no malignancy) and not the process and interactions with the nurse.

    If you got this far in reading this post, you are an angel.  thanks for listening,  I feel better

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  • hrf
    hrf Member Posts: 3,225
    edited December 2009

    Jacquie, I'm so sorry the conversations went badly. I totally understand what you mean. I think it's unconscionable for nurses or docs to hold on to information, especially when they know how upset we get. You have every right to have the information as soon as they get it. I also think sometimes the nurses don't tell the doc's that the patient is calling. You have to continue to advocate for yourself. The good news is that it doesn't sound like a malignancy but they need to make every effort to ensure you have a restful and happy holiday time with your family. A radiologist must read the mri. It doesn't have to be the surgeon who gives you the results. Your family doc or any other doc you work with is entitled to the results and can get a verbal report from the radiologist and can then tell you. (((Jacquie)))

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  • lassie11
    lassie11 Member Posts: 1,500
    edited December 2009

    holy  cow! You sure are being put through the mill - it's not as if asking to be treated as a grown up and for results for your own tests it anything but sensible. Glad you have plan B to go to the next nurse and then the doctors.

    Now - step away from the ledge. Go hug one of your children (they will go back to sleep).

    Really - I hope you get some real answers, preferably good ones, quickly.Warm wishes to you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Thanks Leslie and Helen

    My gyne told me that difficult patients get better care so suggested that I be as difficult as I needed to be.  I need to take her advice, although it is not in my nature. 

    On to Plan B (after I go hug the sleeping boys).

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited December 2009

    Jacqui - I am so sorry you are getting the run around. My advice - continue to make waves! let us know how you get on.

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