Topic: Freaking Out!!

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Aug 11, 2022 02:26PM

Posted on: Aug 11, 2022 02:26PM

ktsmitty wrote:

So I was diagnosed back in July. Nothing I saw, but the past few years there was something there because I had to keep repeating my mammograms, until this year, the radiologist recommended a biopsy. Yep, it was cancer (6 o'clock). Went and saw two separate breast surgeons, both seem to agree on the treatment. One Dr. orders a MRI, which I get the next day. The MRI finds another lesion, so they recommend another biopsy. Other Dr. sees something on the ultrasound and additional mammogram and orders a third biopsy (same breast 4 o'clock). MRI biopsy doesn't happen because a different radiologist says he believes it to be a tendril off the original tumor. I get the other biopsy, of which I still don't have results for as they've ordered more staining tests. So, fast forward to today, and I'm a total basket case and freaking out. Why wasn't all the staining done from the get go? Why would more tests be ordered unless they knew it was also cancer and they need the new stains to isolate the type? I feel like a yo-yo and honestly know what the heck to believe or not believe. How can one Dr. see one thing and others see something else, but they don't agree on either? I've already fired my gynocologist because she didn't even have the decency to call me and tell me about the original diagnosis, she had a nurse call and leave me a voicemail - how awesome was that? I'm seriously on a cliff right now.

Surgery 9/12/2022 Lumpectomy (Left); Lymph node removal (Left): Sentinel Dx IDC, Left, 1cm, Stage IB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Radiation Therapy 10/11/2022 Whole breast: Left breast, Lymph nodes
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Aug 12, 2022 10:10AM mavericksmom wrote:

ktsmitty, so glad you got your results! I am glad we have this platform to learn and to vent. I think I am going to take a break from it for a while. I don't know about you, but sometimes I need to share thoughts and fears, and sometimes I just want to share with my family and close friends.

I wish you the best! We will both get through this!

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2-
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Aug 12, 2022 05:05PM lw422 wrote:

ktsmitty--so sorry that you find yourself here, and that you are having anxiety around the diagnosis. I can tell you that practically every person on this forum understands how you are feeling and that your emotions are all over the place. Most of us settled down a bit once treatment plans are made and treatment started. Many of us needed medication to help with the overwhelming anxiety, so if you feel that might help then please ask your doctor for it. There is no shame in needing a little help to get through the terrible anxiety. My very best to you.

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Aug 13, 2022 05:11PM ktsmitty wrote:

Many thanks to all that replied. I’m doing a bit better now. Surgery is scheduled and since I’m considered Luminal A, no chemo, just radiation. Long road ahead, but I’ll get there. Thanks again.

Surgery 9/12/2022 Lumpectomy (Left); Lymph node removal (Left): Sentinel Dx IDC, Left, 1cm, Stage IB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Radiation Therapy 10/11/2022 Whole breast: Left breast, Lymph nodes
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Sep 21, 2022 05:39AM ktsmitty wrote:

It's been over a month since I posted and wanted to give an update and say that I'm 'freaking out' again. I had my surgery on Sept 12. He took out the tumor and the ALH. He also took 2 sentinel lymph nodes. Went back yesterday for post-op and pathology results. Tumor was 1.5 cm, was also IDC, DCIS, had ALH, and ADH. The lateral margin had IDC 5 mm from the true margin. But, one of my sentinel lymph nodes was positive for Micrometastases and that's what got me very concerned. I guess they'll never know if any got away unless it comes back, right? Then, would it be too late to treat it? My radiation treatment is the same (3 weeks) but I'll also get radiation to the arm pit. My MammaPrint was low risk, so no chemo.

Surgery 9/12/2022 Lumpectomy (Left); Lymph node removal (Left): Sentinel Dx IDC, Left, 1cm, Stage IB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Radiation Therapy 10/11/2022 Whole breast: Left breast, Lymph nodes
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Sep 21, 2022 06:34AM quietgirl wrote:

I wish I had the right words to say but I know I don’t. Experts and others can give you all sorts of statistics and probabilities but in the end because we are each individuals and unique no one can tell you exactly what the future holds. So while a positive node increases your chances it does not guarantee you will have future issues. So you take the steps that you are willing and able to balanced within your personal situation. Often times there is a difference between treatable and being able to cure something or completely prevent something. So one step at a time, try not to worry away your present on what might happen in the future. Focus on getting through this part of the treatment. And make sure you moisturizer your armpit during radiation because that will help get through that. Sending you healing thoughts and positive energy

Surgery 2/7/2022 Lumpectomy (Right) Radiation Therapy 3/9/2022 Whole breast, Radiation boost: Right breast Hormonal Therapy 4/18/2022 Arimidex (anastrozole) Dx DCIS, Right, 3cm, Stage 0, Grade 2, ER+/PR+
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Sep 21, 2022 06:36AM rah2464 wrote:

ktsmitty glad your surgery is completed but sorry to hear you had some surprises on final pathology. One of the most difficult emotional aspects of this disease is when things feel like they abruptly change on you. You kind of think you have in mind what the results will be, wrap your head around that, then you can get what feels like a left turn somewhere.

It sounds as though you have a very competent team who are doing everything to manage correct treatment for you. You have clean margins but now an issue in a sentinel node which will be addressed with radiation and possibly anti hormonals (wasn't sure of your hormone status). The though of movement to that sentinel node can be frightening, however another way of looking at it is your body was doing its job. Filtering and stopping the cancer at the gateway to the rest of your body. I hope some other ladies on here that had micrometastases to one or more lymph nodes will reach out and let you know how they are doing.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/27/2018 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 21, 2022 09:21AM ktsmitty wrote:

Thanks for the feedback. It is all just so overwhelming. My head is all over the place with all of this.

Surgery 9/12/2022 Lumpectomy (Left); Lymph node removal (Left): Sentinel Dx IDC, Left, 1cm, Stage IB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Radiation Therapy 10/11/2022 Whole breast: Left breast, Lymph nodes
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Sep 21, 2022 03:34PM alicebastable wrote:

ktsmitty, my surgery took one sentinel node and it had a micromet. I still had a low enough Oncotype score to not need chemo. I think it's up to three micromet nodes are still considered not worrisome. The only difference it made was more extensive radiation, 33 instead of the previously planned 22 sessions, and zapping my axilla and clavicle areas.

Ignore treatment info (below) which is a BCO glitch. Do not enter personal information on this site since they grossly mishandled a data breach.
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Sep 23, 2022 09:11PM edwards750 wrote:

My situation was exactly like Alice’s.

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