We are 219,609 members in 81 forums discussing 155,380 topics.

Help with Abbreviations

Topic: Brain mets question

Forum: Not Diagnosed With a Recurrence or Metastases but Concerned —

Meet others concerned about developing a recurrence or metastases.

Posted on: May 15, 2019 11:32AM - edited May 15, 2019 04:48PM by SophiaMarie

SophiaMarie wrote:

From what I read, it doesn't sound too good... just wondering if you get brains mets, is there any chance of long-term survival?

Six years ago I was dx with bc. Earlystage 2, lumpectomy and radiation. Nodes clear. Lots of biopsies since, but no cancer. Two weeks ago I had a weird light-headed feeling like I was going to pass out - but it only lasted for a second. Last night I was driving with my son, and suddenly my head started tingling and it came down the sides of my face - felt like something was going to disconnect and that I was going to pass out - lasted maybe 5 seconds. Really scared me. I've been on meloxicam for knee arthritis, and I have Hashimoto's (thyroid autoimmune), so I'm wondering if they might have something to do with it... or brain mets... unfortunately it happened on the anniversary of the day I first realized I had cancer (I remember this because of what else happened that day) and that same day a friend had a seizure because of his yet undiscovered brain cancer. He died a year later.

Dx 7/2013, IDC, ER+/PR+, HER2- Surgery 8/5/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
Log in to post a reply

Page 1 of 1 (8 results)

Posts 1 - 8 (8 total)

Log in to post a reply

May 15, 2019 12:29PM illimae wrote:

Sophiamarie, you’re correct that the stats don’t look good for brain mets but they’re also somewhat outdated and as we all know cancer and treatment response is such an individual thing with many variables. If brain mets are caught early, you can typically live well without many side effects for years, I know of some going on 8-10 years. Pre-cancer I would not have considered 10 years very long term but as a stage IV person, I do now. I had targeted brain radiation for mets twice so far and my biggest issue is the joint pain from Tamoxifen. Please do get checked out though, you need to know what’s going on, brain mets or not. Good luck 🙂

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

May 15, 2019 12:59PM SophiaMarie wrote:

I’m so sorry - you’re now at a year and a half? I can’t imagine how difficult that must be. I’m so glad my appt is tomorrow. Glad and not glad. I was uneasy already just for the routine mammogram, but to have to bring this up now... I know we can’t ignore potential symptoms... Six years ago I put off calling about the dent in my breast. Once I made that phone call, everything moved at lightning speed. I guess I’m just worried that’ll all happen again, only worse. But it might not even be that. It does really take a lot of courage to deal with breast cancer and all that goes with it!!

I wish the best to you - and many more happy years

Dx 7/2013, IDC, ER+/PR+, HER2- Surgery 8/5/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
Log in to post a reply

May 15, 2019 02:15PM edwards750 wrote:

I thought DCIS was Stage 0?

Diane

Log in to post a reply

May 15, 2019 04:54PM SophiaMarie wrote:

You’re right - that’s not correct. I feel so stupid - I researched to the point of feeling like I could teach a bc 101 when it happened. Now I’ve pushed it all out of my mind. I totally can’t think of what it was called. I do know that because I waited, it grew enough to be stage two. Hormone positive. Her-2 neg. - duh, just looked back at my info after my profile info. It was IDC

Dx 7/2013, IDC, ER+/PR+, HER2- Surgery 8/5/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
Log in to post a reply

May 18, 2019 03:35AM SophiaMarie wrote:

They got me in later the same day for an mri. My dr called at 7 am (I love Froedtert Hospital - the techs told me that there were radiologists working at night, so the results would be back today) - no cancer!! And no evidence of a mini stroke either. So still no idea what caused those episodes, but at least it’s not brain mets. Yesterday was probably one of the most stressful days of my life, even more so than the first diagnosis. I think because I knew how serious it would be.

If anyone of you reading this either has mets or is worried about having it, ((((Hugs)))) for you!! Even the threat of this disease can turn your life upside down. It’s not an easy thing to cope with

Dx 7/2013, IDC, ER+/PR+, HER2- Surgery 8/5/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
Log in to post a reply

May 18, 2019 11:12PM vlnrph wrote:

Hooray for good news from a fellow Froedtert-ite! Just this past week, I was able to get in for a same day thoracic CT at the spine center due to unrelenting back pain. No issues seen so I won't be needing another round of radiation or vertebroplasty. Apparently muscle strain (which I was diagnosed with last summer while my L1 was collapsing) can feel very similar to something worse...

How scary to feel light headed while driving. Hopefully your primary care physician can help with a referral to neurology or whatever they deem appropriate. There are at least a couple internists who make general medical care of cancer patients a focus of their practice. Mine moved out of the Sargent Health Center into the Specialty Clinics area recently so not quite as convenient for parking, etc but I guess I'll keep her. Sending you a PM.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
Log in to post a reply

May 18, 2019 11:56PM illimae wrote:

Yay, great news!

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

May 19, 2019 01:35PM KBeee wrote:

Great news!


Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)

Page 1 of 1 (8 results)