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Birads 5 score-scared

lilylady
lilylady Member Posts: 478

  I just picked up the results of my mammogram and ultrasound. The Birad score is 5. I have been up for days reading this site and others and my head is spinning. I have 10 days to wait til I see the breast surgeon. I could get in earlier with someone else-my question is do I get a second opinion before I see first surgeon that I think I really want? I have self-diagnosed by reading so many of the forums here. I have an ill defined hypoechoic lesion with posterior shadowing that measures 3.2cm. It hurts like crazy. Sharp jabs all the way into my chest.

    The receptionist at the first surgeons office said "I would be statistically no worse off for waiting 2 weeks" Boy, was that reassuring. I have only told my best friend-until I know for sure why have everybody's head where mine is? Hoping for good advice on one of the forums on how to tell my family.

 Sorry this is all over the map but I have been sitting here with this report typing in questions to try to figure it out and I just keep seeing that roman numeral V. I am off work for a few weeks with recent knee surgery so I have had WAY too much time to read all the bad stuff. The inspirational stories are great but I am of course riveted by horror.

  Thanks-I had to get this off my chest (guess that will be literal and well as figurative in days to come).

               Lilylady

Comments

  • marie5890
    marie5890 Member Posts: 111
    edited February 2011

    Hello Lilylady and welcome to the boards.

    Im sorry you have a need to be hear and your fear is very very understandable.

    1st bit of advice. !!!! DO NOT get into any great depth of research. You simply don't know enough yet to really do any research that is going to be of great help to you at this point. All you will end up doing is fueling your imagination. We all know what it means to want to be in control esp when one's head is reeling!.

    2nd. Yes a BIRADS 5 is very concerning. BUT you still dont have any information much beyond that. That kind of information only starts coming in after a biopsy.

    Are you asking should you get a 2nd opinion on your mammogram and US from a different radiologist? That is certainly a valid opinion if you feel you want and need one. It never is a bad thing to get someone else to read one's films.

    If you are asking should you get a second opinion from a different breast surgeon than the one you already have an appointment with? That two is always a valid option if you feel you want/need it.

    Please, please, dont self-diagnose. Even the breast surgeon isnt going to know much until AFTER some sort of biopsy. If they aren't going to jump to conclusions, you shouldnt either.

    It is VERY hard not to, we know. It's really hard not to keep our imaginations from running all over the place. But in the end fueling the imagination isnt going to change what the biopsy will show.

    "Breast Cancer" is a big umbrella term. Under that umbrella is a boat load of different kinds of cancers with different characteristics, at different grades with different stages and differned hormonal receptors.

    Try to hang on. Dont get too far ahead of yourself and only stick to those threads that really represent where you are at at this moment in time.

    Now if the BIRADS5 does hold to be true, there is a thread in the "Just Diagnosed" area callled something like "Just Diagnosed-Get prepared" which will give you some step by step practical advice as to what will make the begining part of the journey more organized. 

    Finally, as a newbie to the boards, know that you will be limited to 5 posts in a 24 hour period until you hit 50 (that protects the board from spam)

    However you can PM as much as you like. Just click on the name or avatar of any poster and that will get you to their profile page. from there you can send PMs

    God Bless. The women here will be helpful to you in this.  

  • mdoak
    mdoak Member Posts: 14
    edited February 2011

    Hello Lilylady,

    I love your name! 

    If I were you, I would get in to whatever place would give me a biopsy first. That's what you need right now -- a biopsy. After you have a confirmed diagnosis, you can shop around for surgeons. 

    Something to keep in mind -- a BIRADS 5 score means that it is most likely cancer. There is a chance that it is not. But regardless, it doesn't say anything about what stage you are -- and it could be very early stage. 

    I agree with Marie--try to focus on what comes next. Get that biopsy. Put all your energy into finding a good place to give you a biopsy right now. Then get your results, then get on finding a surgeon. In fact, you can keep your appointment with the surgeon you've got, but in the meantime, try to get a biopsy before that -- then you can take your results to the surgeon you think you want then.

    Good luck.

  • sarahsmom
    sarahsmom Member Posts: 276
    edited February 2011

    Here is what drives me insane about the medical world as related to breast issues (my experience only)

    The receptionist's quote (probably from the doctor's mouth):  "She will be statistically no worse off for waiting 2 weeks"

    What about "psychologically no worse off"?  There is deep psychological pain associated with breast issues, as there are with those related to our reproductive system.  Generally speaking, the only thing a man has to compare to it is prostate cancer, which is very curable and doesn't typically involve the loss of body parts related to reproduction, or their outward appearance/self confidence/feeling desirable.  I think when they make their schedule at that office, they should go in an bump someone out of an appointment that isn't in a medical crisis, which  I would call a BIRADS 5 rated patient. Or the doctor should extend his calendar one day to accommodate you.

    Unless a person has been through similar diagnostics, watching/waiting/worrying, the every 6 month drill - can they truly understand the psychological issues associated with breast disease?

    If I were you, I might consider getting a second opinion this week instead of waiting, or changing my care to a facility that recognizes your angst and works hard to accommodate you. 

  • lilylady
    lilylady Member Posts: 478
    edited February 2011

     Again, thanks for the help. What was I thinking to consider waiting almost 3 weeks? I have phone numbers at the ready and will be on it as soon as offices open,  Hair will be done, make-up applied, papers organized-whomever gets me in first I will be ready to roll. Paralyzed with fear is not going to get this done. Thanks to you guys I have scaled back my rabid imigination and am taking this only at the step that is appropiate. Thanks also for reminding me that the only score I have (Birads) just says I have the greatest possiblity that I have something malignant (what an evil sounding word), maybe other scores down the road will be better.

      Figuring from my reading that I will probably have a core biopsy. I saw somewhere that taking something for anxiety is a good idea- did you guys find it necessary? Is that procedure something I can drive myself to/from?

      I will update after I get my biopsy. IT will be in the next couple of days. This is a big city-somebody out there must have time to poke a hole in my chest!

  • jadeblue
    jadeblue Member Posts: 12
    edited February 2011

    Aw, Lilylady...I know all too well what you are going through. I was told I was Birads-5 last Tuesday. They then said, "Come back for stereotactic biopsy in two weeks." I very firmly told them that was completely unacceptable -- you can't give a woman news like that and then put her through two weeks of psychological torment before you even see her for a biopsy! The surgeon called the hospital on my behalf and I was given a biopsy appointment three days later. I had the procedure Friday and am awaiting biopsy results. As scary as this is, it feels so much better to take action than wait around. I figure if we get the news they tell us to expect, we better sharpen our self-advocacy skills because we're going to need them to get the best care we can.

    Good luck to you. Please keep us posted!

  • mdoak
    mdoak Member Posts: 14
    edited February 2011

    Lilylady, good for you! I'm so glad you're marshalling your resources to get what you need.

    I found it extremely helpful to have someone I loved and trusted with me when I had my biopsy, just because I was emotionally exhausted and needed to talk afterwards. But I easily could have driven myself. I didn't take any Xanax, although I do have a prescription for it, because the biopsy was a surprise. I luckily go to a place for imaging that does biopsies on the spot if they find something suspicious. I wish everyone had access to a place like that! I was scared, but the nurse and radiologist were very kind to me and I got through it just fine.

    Let us know what happens -- M.

  • lilylady
    lilylady Member Posts: 478
    edited March 2011

      Today I found out I have BC. Not as if I didn't know it in my heart but still makes you reel a little. The BS took 7 core samples-which I was worried about but found it no big deal for me. They did an MRI and found the lump to be lemon sized not the 3.5cm that the radiologist had indicated. It is close to the chest wall but has not penetrated it-they aren't sure if it is attached. While I was there they did an MRI on my shoulder-I do have a torn rotator cuff. My PCP has been treating BC with cortisone-maybe she isn't such a hot mess after all. I feel like such a dumbass-how do you end up with a lemon sized lump and not really be more proactive. Because I had the pain in my shoulder and armpit and chest long before it moved into my breast still doesn't excuse it. I DID know something wasn't right.

      The BS said she will call me tomorrow with the results-how much do I read into that? Seems like everyone has to wait for days. She also wanted to put the port in on Monday and start chemo immediately-how much do I read into that? She doesn't even know yet what kind I have. I told her I have knee surgery scheduled for next Friday-she wasn't keen on that but she did say go ahead. I know they aren't going to let me do it while I run this cancer race for the next year so figured better do it now. The first 1 went so well last week-hoping for the same results.

      This is where I have a question. This is not the BS I picked. My appt with the BS at the big Cancer center isn't until next Wednesday and I just couldn't stand not knowing any longer. The BS today had an appt open that's how I ended up there. She was brusque and businesslike-which I am OK with. I fall apart when people get all huggy and pat me and stuff. She had some medical students with her who also got to poke and prod-I was also OK with that. When she calls me with the report and wants to schedule the port thing do I tell her then I want to see someone else? I don't want to totally blow her off in case I don't like the other BS. The place I went today was almost a 70 minute drive versus the cancer center 25 minutes away. Adding an hour drive into the city coupled with the chemo time... my primary driver might end up being my 80 year old mother. That would never work. I didn't dislike her and I didn't feel like she was really pushing me but there was a real sense of urgency when she was discussing the immediate treatment.

      I guess I need to move into a different forum since I am now an official member of the club.?Any suggestions? Is there one with the best way to wear a scarf? I won't be a wig girl-double sided tape in a factory in the summer?  Hope I don't have a lumpy head. I loved the shaved head look on a man but it looks way better if it isn't lumpy. Cancelled my hair appt next week. Why spend all the money on color/cut/highlight and then watch it go down the drain (both literal and figurative)

       Next biggest hurdle-telling my family. Will probably wait til after knee surgery. That buys me another week. I told my boss today and he started crying. He loves me but I bet some of those tears are from the idea of trying to run his assembly line without his best electrician. When the weather warms machines don'r run as well and that season is fast approaching. I am blessed with good insurance. If I try to chemo and work together I will be missing days that I won't get paid for. If I stay off work I get a portion of my regular check. Have to see how the chemo goes. I am a big strong girl, I heal quick and have attitude to spare so maybe I will be able to work thru it.

        Thanks for letting me pour this out-and as always advice is always appreciated.

                            Lily

  • bdavis
    bdavis Member Posts: 3,192
    edited March 2011

    Hi Lily... not a fun road, but you will be fine..

    As far as the BS goes, I would tell her that you want a second opinion... then have your knee done while you wait for the other surgeon... Call the surgeons office you want to see and tell them you have a lemon sized tumor and need an appt ASAP... they can ALWAYS fit you in... they must have extra slots they save for people like you... So have your reports sent over there tomorrow... and then call and insist on an appt.

    Have the appt, and when you prefer the cancer center, just tell BS #1 that you are going with the cancer center due to proximity.  I agree about having chemo first due to the size of the tumor... shrink it and then have surgery... and while in chemo, decide whether you want or will need MX and what kind of recon... delaying the surgery to do the chemo is actually a great way to do research... I am working thru chemo... taking just chemo day off and one other day when I don't feel weel... and if you plan it right, like chemo on Wednesday, you could have your down day on the weekend.

    You will be fine and for sure use this site for help!!

    Betsy

  • marie5890
    marie5890 Member Posts: 111
    edited March 2011

    Lilylady,

    I am sorry that you have joined the BC club. But you know you have found a great site of ladies here.

    Yes, moving onto the next forum will be helpful to you now doubt. There is even a thread that goes "Just diagnosed-Get prepared"

    It will help you, as well as the ladies, navigate this.

    Sending nothing but the best to you and your family.

    Hang in there. Take it all one step at a time so you dont go reeling "too" much 

  • sarahsmom
    sarahsmom Member Posts: 276
    edited March 2011

    Hi lily, I am so sorry about your diagnosis.  Don't look back and second guess your actions, just let yourself off the hook and move forward. Take good care of yourself, you have a lot going on between your knee surgery and this, bless your heart!!  {{ }}