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Topic: Feel Like Things are Moving In Slow Motion

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

Posted on: Sep 14, 2020 07:28AM

Jleath wrote:

Hi. My name is Jackie and I just joined this site last night. I’m 42, mother of one who is 20. I just got married August 16th and I feel like I am going crazy. I’ve found much comfort in reading about experiences and the hope that is within. This started on August 3rd with a routine mammogram. Then to the ultrasound and then biopsy. The dr in my biopsy did not hold back with her belief that I had BC. Fast forward to this past Friday 9/11 when my pathology came in. I apparently have IDC. The mass is 2.5cm. I have read and re-read the pathology a hundred times trying to decipher and decode the report. From what I can see I am Er/Pr + at high percentages. HER2 sent for additional testing. Mitotic score is great (1) and grade 2.... I don’t know what any of that means really just over here trying to make sense of what is difficult to digest. Waiting to meet the MO I have chosen and hoping they will call today for an appointment. I know this is the beginning. I have moments of being ok and then I am not. This is a wild ride so far and I am sure the not knowing is the worst. I know I need to seek out a therapist for support, funny things is that’s what I do for a living, but when it is something like this it seems far different when it pertains to me. My husband is being a champion, loving supportive and anything in between. I just feel like I want to scream at the top of my lungs! Things beyond my control..... it’s going to be ok, and I know that, it’s just the flood of mixed emotions that seem unstoppable. So, here we go! Pressing forward. I’ve risen above so many things in life. This is going to be one of those things...

JackieL Dx 9/11/2020, IDC, Right, 3cm, Stage IIA, Grade 2, ER+/PR+, HER2- (DUAL) Surgery Mastectomy: Right
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Sep 14, 2020 09:34AM NorCalS wrote:

Hi Jleath.

I felt the same way when I was first diagnosed. It wasn’t until I felt I had some control over the situation that I felt stable again. For me, getting control meant understanding my type of BC, researching ways to deal with treatment side effects, and planning for the future. I know that for some, it stresses them out to read statistics, etc. It helps to find whatever helps you deal with the initial shock. I went into my first appointment with doctors without much knowledge and it was scarey. I was lucky that my initial appointment was with a breast surgeon who was really good at communicating and explaining the situation. MO is not a good communicator, so I was lucky to have had my first appointment with the breast surgeon even though I started neoadjuvant chemo before surgery. For me, knowledge was power and it helped calm me down (even the bad news)

Dx: 06/2019, left breast, ER/PR-, Her2-. Treatment: 06/2019 - 11/2019 AC/T. Surgery: Lumpectomy with axillary dissection in 12/2019. Radiation: 01/2020-03/2020. Xeloda - 03/2020-09/2020
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Sep 14, 2020 11:33AM Ingerp wrote:

For many this is the toughest time. It seems easier once you have a definite diagnosis and treatment plan in place, whatever that turns out to be. BCO is a great resource--you can dial down to your diagnosis, your treatment, when you start treatment, . . . . So many sympathetic women! The typical recommendation for this waiting time is to try to distract yourself--binge-watch a junky TV show, watch some funny movies, . . . . You'll get to the next phase eventually.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Sep 14, 2020 12:14PM Jleath wrote:

Hi ladies!

Thank you both so much for the connection.... I have been all over this site and it is not only informative, but there is something about someone else who understands the sense of fear and uncertainty.... I feel as though there will be much of an emotional roller coaster along the way, but honestly (this is one of those moments where I feel like a complete bad---) this can be tackled. The waves of emotion are endless. Just went to the store to buy an energy drink because I am not sleeping well (I am in school working on a masters degree, I work full time as well) and have a mountain of homework to do. I was crying in the car and 10 min later I feel like Wonder Woman with all the strength and courage one could need.

I have been reading and trying to be informed, however, there are so many variations that it is hard to really know what is happening until I get a real diagnosis. Already frustrated with the flow of information (I had to print my pathology and send it myself as my doctors office never sent to the oncologist) but I have to step back and remember I am the only one in fear. When I get that way, I tend to push and people are just being human. I am unsure of the assays tests that my samples were sent off for and there is a bunch of other stuff I do not comprehend. I think I am going to do homework, binge watch trashy tv shows and eat cheesecake lol.


JackieL Dx 9/11/2020, IDC, Right, 3cm, Stage IIA, Grade 2, ER+/PR+, HER2- (DUAL) Surgery Mastectomy: Right
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Sep 14, 2020 05:43PM AbbyRhodes3 wrote:

Hi, Jleath - I'm having a rough day, myself. I was in good shape Sunday, but shaky from the start today - and once the breast care center called (initial call from them) I felt the anxiety and mindfog of the other week come rolling back. Tomorrow I will make the appointment for a first visit to that clinic (hopefully the 22nd) and then I'm going to work really hard on focusing my attention elsewhere.

They are also working on getting the pathology, we are in the same boat there. I gave them the info for the place where I had my biopsy, so hopefully they will connect and get it resolved. So frustrating- but I'm sure probably not unusual with multiple docs, imaging centers, etc. I had a bit of a blowup after the call - screaming at the ceiling stuff. Thankfully after I hung up the phone, lol.

My gosh, full-time work and grad school. I did that in 2010-2013. It's a lot. I'm glad you have a supportive spouse.

One step at a time - but yeah, this one feels interminable.

Dx 9/8/2020, IDC in right breast, 1cm | ER+ 5% | PR+ 1% | HR2+ x3
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Sep 14, 2020 07:25PM bcincolorado wrote:

Hi Jackie,

Sorry you are finding yourself here. The waiting at the beginning and making decisions can seem like it takes a long time and you just want it over with.........I remember it well. Try to take a minute to breathe. It sounds like you have a good support team around you which is good. They will help you as you go through "active treatment". It is a long treatment no matter what you chose to do.

At this point I am 10 years out and was diagnosed at 49. I'm off my hormonal meds now but still see my oncologist regularly and do all my follow up scans I need to do to make sure it does not come back to bite me again.

Best wishes to you.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/6/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/14/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/29/2016 Femara (letrozole)
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Sep 14, 2020 07:28PM Jleath wrote:

AbbyRhodes3.... We are journeying together. Yes, the fear and uncertainty is overwhelming at times. I presume there will be many blow ups and spouts of crying. There is so much support here. I am grateful. Got a call from the MO today, I will be going for an MRI in the morning. I read a thread on here about the MRI's and I feel a little more prepared going in. It's at 8am. Guessing I will hear from them after, but the plan is to meet the surgeon first. I heard today (what I already gathered from the report) ER/PR+ and HER2-. Feeling a little more hopeful as the days roll on. I've been using a meditation app one of my co-workers gifted me. Excited about that as it helps me align with the moment. And the truth is, at this moment, I am ok. One day at a time... One breath at a time... Saying a prayer for the appointment to be made and the path to make it where it needs to go. Love and light.

JackieL Dx 9/11/2020, IDC, Right, 3cm, Stage IIA, Grade 2, ER+/PR+, HER2- (DUAL) Surgery Mastectomy: Right
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Sep 14, 2020 07:36PM - edited Sep 14, 2020 07:37PM by Jleath

bcincolorado,

This is true and thank you. I called my cousin today just to get some info from her with her experience. Different dx's but just to get an understanding of what she chose to do and why. Seems like the side effects of the medications are something to follow up on as NorCalS suggested and I honestly do not know what to expect. I'm like "Do I just go see the surgeon and decide for a lump or removal?" Like it sounds so easy, "Just remove it", but I also did not realize how much of my identity is wrapped up in my breasts. It's really not that easy. There is some emotion tied to that. So many questions and just not enough info yet. I'm hopeful, and positive most of the time aside from temporary breaks in sanity. My cousin was pretty upfront regarding depression, anxiety and self-image issues. Feel like I'm hitting one out of three right now, anxiety being the front runner.


Congratulations on 10 years.... You give me so much HOPE!

JackieL Dx 9/11/2020, IDC, Right, 3cm, Stage IIA, Grade 2, ER+/PR+, HER2- (DUAL) Surgery Mastectomy: Right
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Sep 15, 2020 07:38AM SandyHay wrote:

I am in San Antonio as well. I am 45 and was diagnosed in July, had lumpectomy in August and will begin Chemo on Sep 29th. I am going to the MAYS CC for all of it. Not sure if that's where you're getting treatment but they seem good so far. The radiologist who did my first ultrasound also told me that it was most likely cancer even before they did the biopsy. I have been dealing with almost debilitating anxiety, neck pain and headaches since my biopsy. I am here to talk if you ever need someone. I know how difficult this is.

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Sep 15, 2020 09:34AM Jleath wrote:

Hi SandyHay!

So nice to meet you and it's also nice we are in the same area! Thank you for sharing the sequence, as I see there are variances depending on the diagnosis. The same think happened to me at my biopsy and while I appreciate the intention, that was the longest 10 days of my life while I waited. I have not been functioning well. The anxiety is almost debilitating at times. I spend a lot of time on this site, looking at resources and looking up support within our area. I just had my breast MRI this morning. Really glad that I have been on this site as there is invaluable information from those that have been before us. I am so grateful and I am learning a lot from other people's experience. I am scheduled to see the surgeon on Monday. I guess that is when I get a true diagnosis, thus far I have been over here trying to figure it out be reading, but there is so much that goes into the final decision. I almost did the MAYS CC however, an MO from the START Center came highly recommended from a friend. I read a bunch of reviews, called both places and chose START.

Chemo starts the 29th? Are you having to do the radiation as well? I am definitely here for you as well and yest this is scary. I really did not understand the emotions connected to the diagnosis. It's overwhelming.

JackieL Dx 9/11/2020, IDC, Right, 3cm, Stage IIA, Grade 2, ER+/PR+, HER2- (DUAL) Surgery Mastectomy: Right
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Sep 15, 2020 07:46PM Britspeech wrote:

jleath. I too was dx 2 weeks before my wedding. Aug 3rd 2018. My Stats were exactly likes yours also . Er/pr 98% . I felt like the bottom had fallen out of my world. I lost 10# in 5 days and was sure my life was over...it wasn’t! This is indeed the toughest time as your brain scrambles to make sense of this horrendous dx and the new normal you are thrust into. As you get more info you will start to breathe again. Being in active treatment will give you a sense of control and a steady direction . We are also on this journey with you so reach out when you have questions or just need to be heard. We have been where you are and can be a very soft place to land

Dx 8/3/2018, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 9/27/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 11/13/2018 Hormonal Therapy
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Sep 16, 2020 09:41AM SandyHay wrote:

Jleath,

I hope everything goes well at your Surgery consult on Monday. I will be having 6 rounds of chemo and then 6 weeks of radiation. We are still fairly new to the area and were supposed to move this month but plans changed after I was diagnosed in July. I didn't know anyone who could recommend a good MO so I chose the Mays because I thought it would be like MD Anderson, kind of, but not so much. I have to go to a different hospital for my surgery, port and covid tests before the surgery and before port placement. I'm getting port my on Oct 12th, I don't want a port so I want to see how it"ll go for the first treatment with an IV.


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Sep 16, 2020 10:49AM jelloelloello wrote:

Hi Jackie! Just want to say hi and add some support. We have very similar diagnoses-- I am 43yo, diagnosed in February of this year, also with IDC, ER/PR both at 100%, and HER2 negative (I know you're waiting on that still), but my tumor is much larger (10cm) and my lymph nodes are also cancerous, which makes me Stage 3. My oncologist recommended chemo first, then surgery, then radiation, all at the maximum levels possible because of my advanced stage. The good news is I just finished five months of chemo (AC-T) and it was tough but I totally made it through! And I have surgery (unilateral mastectomy + lymph node dissection) next week! Yes, my life is totally different now-- chemo slowed me down, cancer made me reevaluate my life and what's important, lost my hair, about to lose just one of my boobs-- but I am feeling great and optimistic! For the most part, IDC breast cancer is a very well-understood cancer with clear, heavily-researched treatment paths and lots of success stories. A pretty common, boring cancer. Not that there's ever a "good cancer" (all cancer sucks!), but hey, common and boring was kinda reassuring to me.

But I do remember the beginning when I was just diagnosed-- how time was a whole different thing. Everything moved slower than I ever thought possible, but also in the opposite way, huge gaps of time just disappeared and I didn't remember what I was doing... my brain was overwhelmed with anxiety, questions, forced distractions, ignoring/bottling up emotions while trying to do normal things like drive or work. It's a lot! As britspeech said (I love this, btw): "your brain scrambles" as you make sense of the "new normal." I hear you going through similar things and totally understand. It's cool that you already know some of your own best coping mechanisms, and it sounds like you know how to self-care, so you're already one up on me! I had to learn that shit for real, haha. For me, it also helped to give myself permission to *not* try to make myself the expert, to chill somewhat on the googling and trying to research the results, to write down my questions (before I forgot them) and trust my doctor team to answer them. Not saying that you shouldn't try to self-educate and be your own advocate, of course that's great, too. But it's also ok to not do everything. It's ok to not do it all! Just came here to say it out loud for you (and for me, and for all of us), even if we know this, it sometimes helps to be reminded! love, jess

Dx 2/13/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+, HER2- (FISH) Immunotherapy 4/2/2020 Chemotherapy 4/2/2020 AC + T (Taxol) Radiation Therapy Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Right

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