New TN and Scared!

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hanley50
hanley50 Member Posts: 146

I have been reading every word of every post on this board for the past month and am so thankful you are all here.

12/23/15 I went for my first ever screening mammogram (went to doctor for general check up and he said "Oh your over 40 and should get a mammogram, here's a script.") That was the start of my nightmare.

12/28/15 got a call from my doctor telling me I needed a follow up due to "dense breasts."

12/30/15 had follow up mammogram and ultrasound. Was told I needed a biopsy of both breasts.

01/07/16 had ultrasound guided biopsy on right breast, they weren't sure where to biopsy on the left so they didn't do it then.

01/11/16 got a call to go to surgeon and oncologists office and was told "Sorry, you have cancer."

01/14/16 had MRI - which I thought was the worst experience (little did I know.)

01/20/16 had Stereotactic biopsy on left breast - that was the worst, cried through the whole thing.

01/21/16 had PET/CT scan.

01/22/16 had CT guided lymph node biopsy on right.

01/25/16 back to the surgeon and oncologists office. Left breast - benign. PET - good except for right breast and right lymph nodes which I expected. No results on lymph node biopsy at this point.

01/26/16 had Power Port put in on left side of chest - Chemo first, then surgery.

01/26/16 - after being discharged from having the power port put in, we drove to the other entrance of the hospital and went to medical records to see if the pathology report from the lymph node biopsy was in and it was. Results read "Metastatic Non-Small Cell Carcinoma" - WHAT??

01/26/16 - called the surgeon and oncologists office (BTW - they are in the same office) freaking out about "Metastatic Non-Small Cell Carcinoma" and was simply told all that basically meant was that I had cancer and since the PET didn't show in my lungs that it was not in my lungs, but since there is only a 25% chance that chemo will work, let's go ahead and do surgery first, then chemo. WHAT??

I want to mention that all the above was done by my employer (Easton Hospital.) I work in their billing office. They have exactly 1 nurse navigator who through all of the above was on vacation, off for the New Years holiday, out sick and then off for a week, again on vacation. I had to figure out how to find a surgeon, oncologist and schedule all tests and biopies by myself (except for the lymph node biopsy - the only thing she did for me.) The worst experience of my life.

02/02/16 - had 2nd opinion with Saint Luke's. WOW....they spent 4 hours with me and my husband. What a difference. I think they actually know what they are doing and have change everything over to them. (And because I have been paying attention to what all you wonderful ladies have been saying on these boards I was prepared. I had a copy of all reports and disks just like everyone said to do - THANK YOU.)

I have MUGA tomorrow and am scheduled for 1st chemo on 02/10/16.

There's other bits of information I'm sure I've missed - but I think I've covered most of what's happen. This is a lot of typing!

Thank you for letting me vent and get this all out. Thank you for listening and for just being there.

Maryann





Comments

  • hanley50
    hanley50 Member Posts: 146
    edited February 2016

    Also - I have no family history of any cancer that anyone can remember. I am only 43 and have a 12 year old daughter. I had BRCA testing done on 01/11/16 - but no results yet.

  • Mamiya
    Mamiya Member Posts: 432
    edited February 2016

    Hanley,

    Wow! What a story! I am glad you found us and I am really glad you got a second opinion! So, did the new doctor also say it is metastatic NSCLC?

  • Mamiya
    Mamiya Member Posts: 432
    edited February 2016

    I have been doing a lot of reading about clinical trials and, if you do indeed have NSCLC it seems like there are many to ask about. http://www.cancer.gov/about-cancer/treatment/clini...


  • Praline
    Praline Member Posts: 115
    edited February 2016

    ((((((Hanley)))))) I am so sorry that you are going through this but it is a good thing that you found this site and also had a second opinion. Keep us posted. prayers and positive thoughts going your way.

  • hanley50
    hanley50 Member Posts: 146
    edited February 2016

    Mamiya & Praline - Thank you for your replies :)

    At second opinion appoitment:

    The new surgeon said that the lymph node results seemed to indicate as if I had 2 different cancers at the same time. She said this is highly unlikely and all pathology will be retested. I talked with the pathology lab at the hospital and everything was forwarded to the new hospital yesterday.

    We also met with the new ocologist at the same appointment and he read it as maybe they did not have enough of a sample for immunoshitochemical evaluation to determine the source of the carcinoma. He also said that breast cancer can be "non-small cell."

    They have put my mind at ease "somewhat." The wording is still confusing me because when I try and google (and I know I should not be googling!) "Metastatic Non-Small Cell Carcinoma" anyway I search it comes back to the lungs. I even googled how to google to make sure I was doing it correctly!

    I am all googled out! When I went on the laptop this morning I pulled it up but had no idea of what to google next. I have to trust that they know what they are doing and move on for my own sanity.

    Thank you for listening

  • KSteve
    KSteve Member Posts: 486
    edited February 2016

    hanley50 - What a scary beginning to your journey. I think we all agree that this is absolutely the worst and scariest part. Once you start treatments, you will begin to feel like you're getting some control back. On a "positive" note (if there is one), triple negative is usually very responsive to chemo. Join us over on the "Calling all TNs" thread and you will find the most supportive, knowledgeable group of people. Knowledge is power, but dr google is not our friend. I was 44 when diagnosed with no family history and completely understand your fear. I'm happy you've found doctors that you can feel good about. Try to take it one day at a time. We're all here for you!!

    Hugs,

    Kathy

  • maryna8
    maryna8 Member Posts: 1,810
    edited February 2016

    Hanley,

    So glad you have found doctors who are taking care of you properly. I treated my cancer in a smaller-town setting, if, God forbid, I am ever in that position again I will get myself to a big city cancer hospital.

    I read your post, not sure what it all means. But the beginning is the worst. When we are struck out of the blue with this stuff, it's not as if we have been sitting and studying breast cancer and know what to think. It's like traveling in a foreign country at first and not knowing the language. For good or ill, you will get familiar with all these terms and find out what you are dealing with. Then the fight begins. And you can win!

    There are lots of people here for you.

    Mary

  • hanley50
    hanley50 Member Posts: 146
    edited March 2016

    Hello everyone!

    I have not posted on this thread in a while. I first wanted to thank everyone for there responses. Thank you! I have a couple of updates to report:

    On the subject of my Lymph Node Biopsy and the dx of "Metastatic Non-Small Cell Carcinoma" my second opinion came back almost the same way:

    C. Lymph node, right axillary, core needle biopsy (7 slides, 320-NG-16-0000111, Easton Hospital, collected 1/22/2016): I agree with originating pathologist as follows: - Non-small cell carcinoma, poorly differentiated, amongst lymphoid tissue, compatible with nodal metastasis, possibly of right breast primary described in specimen A.


    On the subjuct of the My Risk Genectic Testing - results came back Negative for everything.

    So, I am still confused about Non-Small Cell Carcinoma and how this does not relate to the lungs. I really just have to trust that the doctors know what they are doing.

    On the matter of the genetic testing, I was so relieved for my daughter, but at the same time it leaves me wondering if I am negative, why do I have breast cancer?

    The why's and how's and what's this mean are going to make me insane.

    Since my original post I've turned 44 and have now had 3 chemo treatments and am just moving along with process.

    Thank you all for your kind words and support. It means so much.

    Maryann




                            
  • hanley50
    hanley50 Member Posts: 146
    edited March 2016

    Ohhhh....

    I did forget to mention that the originial genetic testing done by the first incompetent doctors got lost! Yes - lost. The whole kit. Who knows where my blood sample is!

    I had another blood draw on 02/24/2016 at my new doctor and got my results on 03/08/2016. Just another reason I am so fortunate that I went for that second opinion and got far away from those doctors.

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