Numb to new findings. Frightened

Options
Liloefer
Liloefer Member Posts: 13
edited January 2016 in IDC (Invasive Ductal Carcinoma)

I was initially diagnosed October 22, 2015. During this time, I received an MRI that showed the cancer was possibly headed to the internal mammary nodes. I underwent a bilateral mastectomy in November and axillary armpit nodes appeared clear and margins were good. Staged 2a. I was sent home being told I was a cancer-free. Nothing more was said about the MRI findings about the chest nodes even when I brought it up. It haunted me so I went to the Mayo two days ago. After a barrage of tests, I just found out an hour ago the internalmammary node they biopsied was positive. This changes my staging to a 3 something. I make the long commute tomorrow to meet with my dr againbut all I can think about is having a body riddled with cancer and dying before I see my daughter start kindergarten. I'm sitting home all alone bawling my eyes out, trying to read the giant book they gave me about breast cancer and it's looking like my fears are likely. I guess I'm on here to hear I'm wrong. Please tell me I'm wrong.

· Share on FacebookShare on Twitter

Comments

  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    Liloefer, so sorry you are upset. I have IDC but they can't find it (unknown primary). I had lumpectomy and axillary node dissection, I had one positive node and I'm staged at IIA. I'm wondering what is the difference? You didn't have your nodes removed with the mastectomy I guess is the reason. Before my surgery I was staged at IIIA, but since only one positive node at 3mm, I was downgraded to IIA. They are assuming Letrozole got rid of my IDC but it's still a big worry for me.

    I'm afraid you aren't wrong about the positive node with a barrage of tests, One node does not make you riddled with cancer especially since they've done all the tests. Try to stay positive. Are you scheduled for axillary dissection now?

    · Share on FacebookShare on Twitter
  • NatsFan
    NatsFan Member Posts: 3,745
    edited January 2016

    Good for you for following up and getting that second opinion. What a horrible shock to find that your positive node was somehow overlooked. Grrrrrrrrrrr!

    But to your point, my wonderful SIL was dx as Stage III 6 years ago. I can remember her sobbing over the phone when she got the news, convinced that she'd never live to see her grandkids. After a bmx, chemo, rads, and DIEP flap recon, she's cancer free, alive and kicking - enjoying her kids and grandkids, traveling with her husband all over, visiting family, and generally enjoying life. Oh, and she dyed her hair a blazing red, just for fun!

    I was dx 8 years ago, Stage IIb, with a positive node and a Grade 3 tumor. After a bmx, chemo and a DIEP flap recon, I'm also NED, alive and kicking 8 years later, and living and loving my life. As a matter of fact, I celebrated my 5 year anniversary by running a half marathon. If you saw me, you'd know I certainly don't look like a runner, but even fat and slow runners can complete a half marathon if you're determined enough. And after cancer, 13.1 miles was nothing!

    Hang in there - you've already learned the hardest lesson - we all have to be our own advocates. You're already proven that you know that and it has served you well already. That's a valuable strength.

    · Share on FacebookShare on Twitter
  • Liloefer
    Liloefer Member Posts: 13
    edited January 2016

    I had one arm pit node removed during my bmx that was negative, but nothing was done to check the chest node until two days ago. I was told breast cancer always travels to the arm pit first, then other nodes so the chest node involvement was disregarded. I was confused by that "always" comment, so that may be why I'm so destroyed. The mayo radiologist said 2 internal mammarynodes showed on CT but the subsequent US could only find one. That one was 7mm, biopsied positive.

    · Share on FacebookShare on Twitter
  • Hernie
    Hernie Member Posts: 1,016
    edited January 2016

    Liloefer, a new diagnosis is a very stressful time as we figure out where we are and what we need to do. What's happening now is that you have gone from zero to one node. Not ideal but certainly manageable.

    Your one node is a mammary node and not an axial node. So was mine, but that made no difference to my treatment plan. One node is one node, that's about medium risk for recurrence. They will offer you chemo, which is no fun, but then you will move on. We are all here with you.

    · Share on FacebookShare on Twitter
  • Kiks1
    Kiks1 Member Posts: 254
    edited January 2016

    Liloefer, my breast mri showed an enlarged internal mammary node about 1.2cm. My oncologist and radiology oncologist both suggested that I have a pet scan to see if it will light up. If it does, they would then do a biopsy to confirm malignancy. Affected internal mammary nodes are seldom removed because of their location under the sternum ( which makes it difficult and dangerous to remove). The course of action would be to pursue radiation and chemo to treat the node. Mine did not light up on PET and they are confident that the enlargement was due to the node being reactive to the biopsy that I had just underwent ( it was the closest node to the IDC). Also, my idc was located on the inner quadrant of my right breast.

    During that time, I tried to gather as much info on internal mammary nodes as I could. These are some of the things I have gathered.

    - It is definitely less common than affected anxillary nodes, could be due to location of the tumor and how lymph drains from the site ( because mine was in the inner quadrant, they were suspicious of malignancy)

    - It is still considered local regional occurrence. I had a hard time determining if it would be considered stage 2 or 3. N1b is considered spread to internal mammary nodes found through SNB but the nodes are not enlarged, N2b is when internal mammary nodes are enlarged. Staging takes into account size of primary tumor as well as how large the internal mammary nodes are. Here is the link: http://www.cancer.org/cancer/breastcancer/detailed... .

    - When I googled, I found one poster in a forum( not this one) that was stage 2 even with affected internal mammary nodes. She was from the UK. I found one post here on this forum where someone mentioned that their internal mammary node was removed during mastectomy and SNB ( don't know details). I asked my onco but from what he said and from my understanding, internal mammary nodes are located under the sternum and are challenging to remove. That being said, I think many do confuse internal mammary nodes with intramammary nodes ( 2 different things). I also read that it is possible to remove them through some sought of surgery ( not exactly sure and not commonly practiced ) but may be risky.

    - Most people with affected internal mammary nodes are in the stage 3 discussion board, they might be able to help you with answers. That being said, I don't believe that cancer understand numbers too well and many with affected internal mammary nodes are still well, alive, and kicking many, many years ( and, by that, I don't mean 5, in what world is 5 years considered long term!!!) from dx. Cancer does not progress from stage 1 to 2 to 3 etc. Anyone in stage 2 has as good a chance to mets as one in stage 3 ( it is 0 or 100%).

    - Give yourself credit for pursuing an answer. If you didn't the outcome would definitely be worse.

    BC is scary no matter the stage and it is difficult to be 'upstage'. Keep strong and like Split bean said, one node is just one node, keep positive. Come post when you need support, this is a great community of people.

    · Share on FacebookShare on Twitter

Categories