Diagnosed on Thursday night

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pepper43
pepper43 Member Posts: 103
edited June 2016 in Just Diagnosed

Glad to have found this board! I'm a 43 year old mom to 4 in a blended family. I had put off getting a mammogram for 3 years- had my first one right as I turned 40 and everything was fine. No family history of breast cancer so I was in no rush to get another.

As part of my annual, got the referral to have one so off I went for my screening mammo. Got a call back the next day or so asking me to come in for a diagnostic - didn't get worried at all. Figured there was just some weirdness going, maybe hormonal extra lumpiness or something. Did not stress at all~ up until I was told radiologist wanted me to have an ultrasound then. Lengthy ultrasound with 2 separate techs (one was in training so a more experienced one came in to go over stuff). Asked to wait on table while they showed stuff to radiologist. Worried more. About 15 minutes later, radiologist came in to let me know that he had gotten off the phone with my ob.There were 3 solid masses (largest at 1.3) and an abnormally enlarged lymph node. I'd have to see a breast surgeon to check things further.

Had a core biopsy of largest mass & needle extraction of lymph node on Wednesday- got the call Thursday at 5:30 (after office hours) that I have Invasive Ductal Carcinoma, grade 3 cells, estrogen receptive (yay!) and HER2 negative. They're staging it at 2...but surgeon noted that could change based on further diagnostics- including a chest MRI on Monday. They're aiming to get insurance approval for full body PET scan and then I'm off to oncologist.

Feels so surreal just to type this. Scared. Nervous. Overwhelmed. A whirlwind of emotions.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2016

    Hi petrinah and welcome to Breastcancer.org!

    We're so sorry for the reason that brings you here, but really, really glad you found us, too!

    We know it can be super overwhelming when you're first diagnosed. Just have faith that with more tests comes more knowledge, and therefore helps you and your doctors get a plan in place. Knowledge is power and the more you know about your diagnosis, the better you will feel about navigating treatment and beyond!

    You've come to the right place for support -- our Community is a wealth of helpful, supportive, and knowledgeable members ready to help you through every step.

    We look forward to hearing more from you soon! Welcome, again!

    --The Mods

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited June 2016

    Petrinah - so sorry that you find yourself here, but this is an awesome place with great info and the kind supportive sisters.

    Breathe, the waiting on all the tests to be done and forming a gameplay is the most difficult.

    Use this time to your benefit. Check out your medical center for all services available for BC patients and go. If there is a support group attend and ask questions. Research here on this site, but don't run too far ahead...no need to go down a path you may never need to go. One day at a time...live in the present.

    Prepare a BC file and ask for copies of all reports, tests, films,and business cards. Learn the first names of all receptionist and smile they are your best connection with your team...honey goes along way. Keep an appointment notebook and record your questions and have hubby record the answers to all questions. If you need to set up a caring bridge site do so...you will be surprised by all who wish to bless you..write thank you or save kids art work as thank you

    The Breast Cancer Husbnd is a good read for you and hubby. Highlight what speaks to you so that he can get an idea what you need. Words sometimes are hard to find and our minds are overwhelmed so give each other plenty of grace. This is doable, you've got this. And breathe, savor the moments with family, do what you love, laugh and know that there are others here that are ahead of you will come along side to support you.

    Check out stage 2 sisters and other threads as the path unfolds...

    You are in my thoughts and prayers

    (((Hugs)))

    Cindy

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  • pepper43
    pepper43 Member Posts: 103
    edited June 2016

    Thanks so much Cindy! I'm tearing up reading your reply. Emotions are on defcon5.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2016

    petrinah,

    Cindy/RMlulu already gave you some great advice. I just wanted to add that if your anxiety is interfering with your capacity to function, feel free to ask for an anti-anxiety drug. I have a stash of Ativan that I use before major scans and tests. (It's also useful for insomnia.) I never used anti-anxiety or depression meds before cancer, but they have been very useful to me as I parent three children and work full-time.

    In any case, it sounds like your medical team is getting you scheduled for your initial scans and appointments. Don't assume that your doctors are thinking the worst by setting up an MRI and PET scan. Those scans are very useful as baselines which can be compared to future scans to determine changes/stability in your body. I remember filling out my PET scan form, which asked why I was getting one. I wrote, "To see if my cancer has spread." Of course, it turned out to be localized cancer so that turned out to be a moot point.

    Best wishes!

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  • pepper43
    pepper43 Member Posts: 103
    edited June 2016

    I had inquired at first visit with breast surgeon -asked the nurse and she said Dr. doesn't do that. Did you get yours from a general practitioner? I'm not sure where to go get started. But the anxiety is making it hard to function as normal.

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited June 2016

    Petrinah - breathe, when you go for MRI they will ask if you need something for anxiety. On Monday you can let them know if you need something. Read this site info on MRI. I did not need anything...you will have IV for contrast dye...you will lay facedown arms around head on the table, if possible relax close your eyes and go to your happy place...tech will check on you and you have a button. Remember you are there to get the truth about your cancer work with it...machine makes noise, you may notice the contrast or not, takes 30 minutes...but MRI is gathering critical info so relax and let it be gathered. Reward yourself you did it. Always ask before procedures if you need something. You can ask when scheduling.

    Your breast center support group is good source on what who how...helped me gather info on team and plan options so when I had details on what I faced...I could choose...follow your heart not your fear

    (((Hugs)))

    Cindy

    PS add your profile info...so others with similar profile will come alongside

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  • msphil
    msphil Member Posts: 1,536
    edited June 2016

    hello sweetie things will ease up when treatment plan in effect i was diagnosed at 42 yrs while planning my 2nd wedding but Praise God i am now a 22yr Survivor hang in there Hope n Positive thinking got me thru. msphil idc stage 2 0/3 nodes Lmast chemo and rads n 5 yrs on tamoxifen.

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  • pepper43
    pepper43 Member Posts: 103
    edited June 2016

    Thank you for the guidance! Have added dx info with what I know so far. Things subject to change. This staging process SUCKS.

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  • tsoebbin
    tsoebbin Member Posts: 474
    edited June 2016

    H Pepper... waiting is so hard. I understand and encourage you to stay around here and lean on the women here. They are amazing and understand the defcon5 emotions!

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  • queenmomcat
    queenmomcat Member Posts: 3,039
    edited June 2016

    Coming over here to say: welcome to the breast cancer boards. Sorry your diagnosis threw you into this maelstrom, but (take a deep breath) you've found us.

    I've had (munbletwitch) MRIs in the past ten years due to a spinal issue that still hasn't been fully resolved, and while they're no fun AT ALL WHATSOEVER, they're not insurmountable. My father got over his by imagining the gum machine in the '70s version of Charlie and the Chocolate Factory. I got over my first spine MRI by simply having to go to work immediately afterward--I couldn't take a tranquilizer--and all subsequent ones were much easier thereby as I knew I'd managed the first. Keep in mind, with the breast MRI you'll be sent in feet first; you will be able to glance up and see out the end of the machine. Are you at all claustrophobic?

    But in any case, let us know how it went? Please?

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  • labelle
    labelle Member Posts: 721
    edited June 2016
    • Yes, see your GP for anti-anxiety meds if needed. I dove into the xanex bottle pretty heavily when I was first diagnosed. My GP said as far as she was concerned a BC diagnosis ought to come with unlimited refills! I hardly ever take it anymore, but for the first few months it was a godsend.
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  • RMlulu
    RMlulu Member Posts: 1,989
    edited June 2016

    Pepper - hope your MRI went well...and pet is scheduled fast so you have all the data to begin to make a plan. Yes, the waiting sucks...find your calm...Med induced if needed...it's so much better with a game plan...makes one feel we control the roller coaster...breathe you got this...

    (((Hugs)))

    Cindy

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  • pepper43
    pepper43 Member Posts: 103
    edited June 2016

    Still waiting on word from surgeon on MRI results...but on bright side insurance approved PET scan and I will be getting one tomorrow morning.

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  • pepper43
    pepper43 Member Posts: 103
    edited June 2016

    MRI results in - they're considering the 3 solid masses as one so my once 1.3 cm tumor and two littles are now a 2.4 cm. Looks like still just one lymph node impacted. I was hoping for lumpectomy as an option since radiation is in works anyway...but the fact MRI showed two more littles nearby means there might be a wrench in that plan. I will need another biopsy for these to figure out what's going on and depending on how that turns out, mastectomy may be the only option. This makes me sad. Still nothing showed up in left breast so that's good news.

    Surgeon's office managed to get me in for a PET tomorrow morning...and I'll be meeting my oncologist on Friday. So things are moving. And I have Xanax.

    So many doctor's appointments. This is like an ultra-marathon. Words of wisdom would do me well right about now. This mama's tired.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2016

    Hmm.... You might still be able to get a lumpectomy if you do neoadjuvant chemotherapy and it shrinks your tumors. I had a 5 cm+ tumor, and neoadjuvant chemo wiped out the active cancer in my breast and in my compromised node. So, I ended up with a lumpectomy rather than mastectomy. One of the good things about having Grade 3 cancer is that chemo is very effective against it as it works to destroy quickly dividing cells.

    Keep your eyes on the prize, pepper. Think about how awesome it will be when treatment is all done and you can watch your kids grow up!

    Yes, lots of doctor's appointments! If 70% of life is just showing up, 70% of fighting cancer is just showing up for your appointments.

    Best wishes to you!

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  • Paxton29
    Paxton29 Member Posts: 221
    edited June 2016

    No kidding--breast cancer is a job in and of itself with all the doctors' appointments. But eventually time passes and treatment winds up. I've been through bilateral mastectomy, chemo and am almost 3/4 of the way through radiation. I can't wait for a time when I can go, oh, two months without seeing a doctor.

    Best of luck to you! This part sucks so much, as you try to adjust to this nasty reality, but lots and lots and lots of women do just fine. Being in treatment really does help your mental state as well as your physical being.

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited June 2016

    Pepper - more pieces of the puzzle...yeah, tomorrow's PET & Xanax

    Be sure and tell your team you would like to keep your breast if possible. Neoadjuvant chemo may be option so ask...shrink those c cells and then lumpectomy. Your input on your plan is important. Follow you gut.

    Appointments tests doctors after awhile it will be just sop and the day you don't will seem like withdraw time.

    Sleep well....

    (((Hugs)))

    Cindy

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  • pepper43
    pepper43 Member Posts: 103
    edited June 2016

    PET scan is now done. Phew. Another thing off the list. Need to get binder with dividers and start keeping tabs on visits, receipts and such. I'm crossing fingers to hear from surgeon about PET tonight...but I know it could be tomorrow. Either way- I've heard PETs can be misleading with false positives.

    Very much looking forward to meeting the oncologist on Friday and getting a plan of treatment together. Thanks so much for the input on neoadjuvant chemo. I'd like to keep my breast if possible.

    VERY GRATEFUL to have found this board. It helps to just lay all the cards on the table with others who've been down the path before.

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  • Trvler
    Trvler Member Posts: 3,159
    edited June 2016

    Just as an FYI, higher grade cancer responds more to chemo than lower grades.

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  • pepper43
    pepper43 Member Posts: 103
    edited June 2016

    Trvler- my husband is a toxicologist and I was scratching my head over his noting that Grade 3 was a good thing...but he explained that was why. They respond to chemo. Oh the things you learn when diagnosed!

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited June 2016

    Pepper - yippee you did it! Breathe, it's coming together.

    As your plan firms and you determine your needs consider a Caring Bridge account to help others help you...great way to schedule help.

    Cheers to Friday's MO visit...get your questions ready.

    (((Hugs)))

    Cindy

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  • pepper43
    pepper43 Member Posts: 103
    edited June 2016

    RMlululu- Thanks!!! I'm spinning. Any recommendations/suggestions for questions?

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited June 2016

    Pepper - read through the main site understanding your diagnosis. There is a section on questions to ask your dr....what speaks to you. Write down your questions take 2 copies give one to dr and hubby records answers...you won't remember overload.

    What thoughts ... concerns are on your mind...where does your mind go...what wakes you up at night...understand what comes first and be comfortable with taking that step. As you move forward reward yourself...take mini c vacations...have no c zone times.

    You are doing great 😜 You got this!

    (((Hugs)))

    Cindy

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  • hyphencollins
    hyphencollins Member Posts: 109
    edited June 2016

    Pepper - sent you a pm. Just echoing what the others are saying... going through the testing is the worst... once you decide on your plan, the anxiety definitely decreases. It sounds like you already have some idea that you want neoadjuvant -- that's a start! As someone else said, once you have your plan, all you have to do is show up and let the doctors do the work. Hang in there and keep us posted!

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  • RMlulu
    RMlulu Member Posts: 1,989
    edited June 2016

    Pepper - hope you have all your pieces and are moving forward with your game plan. There's so much power in knowing and taking the next steps in treatment.

    You got this warrior

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