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Topic: Just Diagnosed - IDC

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

Posted on: Jun 4, 2021 12:46PM

Texasmamabear wrote:

I had my biopsy on Wednesday and received the news this morning that I have Invasive Ductal Carcinoma in my right breast. I’m scheduled to see the surgeon on Monday morning. If anyone has any advice on what questions to ask at that appointment, I’d appreciate it. I don’t have a copy of the pathology report yet. My head is spinning a bit but I’m confident that I’ll get through this. It’s just hard.

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Jun 4, 2021 01:11PM BtwnStars wrote:

Hi Texasmamabear, sorry you find yourself here. I would suggest getting a notebook ready to take to your appt and over the weekend anything you think of asking, write it down. Then be prepared to ask and take notes, if you can take someone else with you to be a second set of ears is good as well.

At my first appt with surgeon she went over everything, explaining my type of cancer, grade, stage, as well as options for treatments including surgery, possible chemo, radiation therapy and hormone therapy. You should find out if your cancer is hormone receptor positive and/or HER2 as well. This will have the most impact on treatment plan at this stage. Find out if you need any further screenings like ultrasounds or mri.

My initial questions were about continuing things like supplements, hair coloring, diet changes, etc. I asked about recommend time off from work/recovery time. At the time I was scheduled for covid vaccine, so I asked about that.

You may want to consider plastic surgery options if you are a candidate for that. If you research and read the articles here on being diagnosed it should give you a great overview and probably prompt some questions you will have.

Good luck with your appointment and you are right, you will definitely get through it.

Dx: IDC, Stage 1A, grade 2, ER+/PR+, HER2-
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Jun 4, 2021 01:32PM edj3 wrote:

I completely agree with a notebook or an app where you can keep all your questions. In the moment, it can be easy to forget what you were going to ask.

If your facility has a nurse navigator, that person can be incredibly helpful to you.

Also something I think most of us would agree on is that there's a lot lot of hurry up and wait. To us, or maybe just to me, we want that stuff out and we want it out now. But as you'll learn as you read more, esp if Beesie shares here (she is a wealth of good info), that cancer's been there for a bit and any wait right now almost certainly won't make things worse for you.

If you have health anxiety, now's the time to close your browser, or at least only look on BCO for information about breast cancer. You can find a whole lot of alarming info out there, almost none of which will apply to your situation.

Remember to breathe, to eat and sleep and drink water. Also go for a good walk, or if you're into fitness, get in some good hard workouts. Those do wonders for any fear or anxiety you might be feeling.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 4, 2021 02:57PM LivinLife wrote:

I can't really add anything....Just want to send support your way.... It is especially overwhelming at the beginning... once you get a plan it will help a lot - not that you can't still feel overwhelmed at times though it helps a lot to have a plan....

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Jun 4, 2021 03:55PM Moderators wrote:

Texasmamabear,

We're so sorry to hear of your confirmed diagnosis, but we're glad you continue to reach out here. As you can see, our amazing members are all here for you!

You've received some great advice above already. We also wanted to share this page from the main Breastcancer.org site on Questions to Ask Your Doctor About Your Diagnosis. Some of the answers might not be clear yet, but as more pieces of your pathology report come through, more questions will get answered, and a path forward to treatment will be laid out.

We hope this helps. We look forward to continuing to support you through treatment and beyond! Let us know if there's anything else we can do to help.

--The Mods

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Jun 4, 2021 06:20PM GreenHarbor wrote:

Texasmamabear, I’m sorry you find yourself here. I second the advice of everyone else to get a notebook and write everything down. Don’t be afraid to ask questions, even if you think it’s silly, and don’t be afraid to ask your doctors to explain something again if you don’t understand it. Your doctors will make an educated guess of your treatment plan based on biopsy results, but nothing is final until the pathologist analyzes the whole tumor after it’s removed. Be careful on Google, there’s a lot of bad info out there. Even be careful here until you know which threads will apply to you. Above all, know that you’re not alone! Best of luck, and check back in when you feel up to it.

Dx 7/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 8/23/2018 Lumpectomy: Left Hormonal Therapy 9/15/2018 Radiation Therapy 10/1/2018
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Jun 4, 2021 10:47PM AliceBastable wrote:

When I first met with my breast surgeon, she gave me a big 3-ring binder with tons of information, and she'd gone through and made notes explaining the parts that were relevant to my diagnosis. There were also places in it to add notes. I dragged that notebook around to every test and appointment, like a rigid security blanket. I hope your surgeon and facility are as thoughtful and helpful.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jun 5, 2021 05:27AM Rah2464 wrote:

Well, rats Texas I was praying for a different result. Your surgeon will go over a tremendous amount of information with you. Like Alice mentioned, my BS also handed me a book full of info with space to write. She also drew diagrams as she explained things to me. You will have a lot to process and it is easier if someone you trust is there with you to hear what is communicated. We are also here to help you in any way possible. I hope you get a nurse navigator to assist in scheduling appointments, etc. So helpful.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 5, 2021 10:31AM kksmom3 wrote:

Sorry you have to join the club. Be sure and take a support person. You need another set of ears, it's shocking and hard, and you may not remember all that was said. Also, second opinion if you aren't comfortable. We are here to help. Hugs.

Dx 8/8/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 10/1/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jun 5, 2021 02:41PM Texasmamabear wrote:

thank you all for your support and wise advice. I’m very fortunate to have a nurse navigator who has been with me since I had my ultrasound after the abnormal mammogram. She has given me a lot of very useful advice and also has access to my medical records. My husband is coming to my appointment with the surgeon tomorrow. I’m hoping to learn more about my ER, PR and HER2 results. They were not back from pathology as of yesterday.

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Jun 9, 2021 10:00PM - edited Jun 11, 2021 10:17AM by amybirnbaum1

OMG i literally just found out i have Invasive Ductal Carcinoma, with 1.3 cm tumor and no lymph nodes on biopsy. Freaking but at least now can start on my way to getting rid of this! Still waiting on the HER and those other categories.

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Jun 9, 2021 10:25PM tntnsd wrote:

Oh Texasmamabear, amybirnbaum1, so sorry that you have to be here. Just want to send my support your ways. Hopefully once you your treatment plan set with your doctors, you will be less worried. Hug

Dx 12/29/2020, DCIS, Left, Stage 0, Grade 2, 0/3 nodes Surgery 2/2/2021 Mastectomy: Left
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Jun 10, 2021 11:30AM Salamandra wrote:

Hi Amy,

Sorry you got that news and also hoping that everything turns up on the right side of the coin from here on out! My initial biopsy results were exactly the same - 1.3 cm. It was a bit of a crazy year, but I'm feeling good now and hopeful about the future, and I wish the same for you!

Do you already have a treatment center in mind? While you're waiting for the rest of the biopsy results, one useful thing you can do is to arrange to set up your initial appointment and have your records transferred there.

Good luck!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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Jun 10, 2021 08:59PM Jetcat wrote:

so sorry to hear but you’ll get through this—small size and no lymph nodes is positive.

Hopeful Dx 2017, DCIS, Left, Stage 0, Grade 3, ER+/PR+ Dx 2019, DCIS, Left, Stage 0, Grade 3, ER-/PR-, HER2- Surgery Mastectomy Radiation Therapy Surgery Lumpectomy
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Jun 10, 2021 09:26PM pudelpointer wrote:

When I met with my surgeon we recorded the conversation with her approval. So we have audio of the entire appointment. It was so nice to be able to listen to it again because it kinda felt like I was being fed information with a fire hose. This also allowed my husband to listen to what was being said instead of trying to write everything down.

I took a list of questions that I had, but honestly my surgeon answered all but two of them with her overview. She had a packet with my diagnosis reports and such that she went through as well as all of the different surgical options with hospital stay, length of surgery recovery times etc. She also reviewed what potential treatments will look like based on what they see currently vs what they may find during surgery.

41 at diagnosis. MammaPrint came back Low-Risk Dx 5/14/2021, ILC, Left, 6cm+, Grade 2, ER+/PR+, HER2-
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Jun 11, 2021 05:57AM Rah2464 wrote:

What an apt description, Pudelpointer. Fed information with a fire hose - that provides the perfect visual to how it feels.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 11, 2021 10:19AM - edited Jun 11, 2021 10:22AM by amybirnbaum1

This Post was deleted by amybirnbaum1.
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Jun 11, 2021 10:25AM amybirnbaum1 wrote:

Thanks everyone. I'm trying not to think ahead to worse case scenarios... i know that is so unhealthy. I know there is a lot ahead, BRCA test, MRI, surgery...and then who knows. Trying to stay away from worse case scenarios that pop up in my head, but scared to death. Oncologist on Wednesday, surgeon week after. Best wishes for us all.

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Jun 11, 2021 07:25PM Mimidee wrote:

Hi,

I just got my positive pathology report on a portal late this afternoon with no one to ask about it. I am terrified and feeling overwhelmed.

Hard to quit thinking about it.

Thanks for indulging me,


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Jun 11, 2021 10:57PM Moderators wrote:

Welcome, Mimidee. We're so sorry you find yourself here, we know how overwhelming and scary the early days and weeks can be. You are in the right place for support, we're all here for you.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jun 12, 2021 06:13AM Rah2464 wrote:

Amybirnbaum and Mimidee sorry you both have received a diagnosis. Honestly you are in the most difficult part right now. You have only bits and pieces of information, and you are waiting on appointments with doctors to determine next steps. Vent here, ask questions, we are here for you. Hugs and prayers to you both.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 12, 2021 08:48AM Mimidee wrote:

Thank you. So glad to know you are here. I feel so lost and scared. I found out on the hospital portal while in the park with my kids on a Friday to boot. I put in a desperate call to my doctor who hasn’t even received the results yet and she said she would call me today at 10:30. I feel like I won’t be able to concentrate at work….did anyone take time off early in their diagnosis? What is the usual time between diagnosis and surgery. I am in Canada so maybe it’s different

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Jun 12, 2021 03:54PM exbrnxgrl wrote:

hi mimidee,

Being almost 10 years out from surgery I need to jog my memory a bit. I took no time off from work between dx and surgery. There would have been no reason to take time off. I am actually very glad I had work as it served as a good distraction and kept me from hyper focusing on bc. Besides, I felt fine and wanted to use my sick days/medical leave for when I was recovering. I had one step recon with a ps who I felt very comfortable with but waited almost 10 weeks so that he and the general surgeon could coordinate their schedules. Breast cancer certainly needs to be taken care of but is rarely an emergency. Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jun 12, 2021 08:09PM edwards750 wrote:

Wait a sec breast cancer isn’t an emergency? I’m reading your stats and wondering how you could say that. Of course it has to be taken care of but it’s still the dreaded C word and one that you will be branded with for life.

There is nothing wrong with trying to take the fear factor down a notch but there is also the need to be realistic.

I am 10 years out this August and I still get nervous before my annual mammogram. I don’t think anyone who has been DX ever stops looking over their shoulder.

Not trying to be maudlin but it is what it is.

Diane

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Jun 12, 2021 11:58PM - edited Jun 13, 2021 12:06AM by exbrnxgrl

edwards,

I am not sure who you are addressing. I was the one who said bc is not an emergency so me, perhaps? In any event, no, bc is not an emergency. It is not uncommon nor unreasonable to have weeks or even months, for me two between biopsy and surgery. In my case I wanted a particular surgeon and plastic surgeon so that was the earliest we could coordinate everyone's schedules. Did it make any difference? Not one single bit! And if you are referring to my statistics you should know that I am a rare bird. It's a long story but I did not become metastatic just months after surgery. We know this because my bone met, yes just one, is a very indolent grade 1 so it had been there all along. I had no symptoms and it was an incidental finding on an unrelated PET. I have lived with stage IV bc for 10 years with no progression and no one has branded or stigmatized me with the word cancer, so not sure what is meant by that. At no point in my 10 years with mbc has it ever been considered an emergency. Now, the pneumothorax that occurred after my port installation; that was an emergency!Take care

To mimidee, perhaps I worded it badly but bc is not an emergency in the same sense as a stroke or a heart attack. In fact, most bc is relatively slow growing and has probably been growing for several years before it was detectable. I'm not suggesting that you wait a year to do anything but you have time to find medical providers who you are comfortable with and/or seek second opinions. Do move forward of course but you have time to consider your providers and treatment choices. Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jun 13, 2021 05:59AM Rah2464 wrote:

Mimidee I hope you were able to connect with your doctor. I will echo a bit of Ravelry's comments - staying busier might be your friend right now to keep you from spinning. We all react differently, but I so get the initial fear and anxiousness we have all been there. There is no shame in requesting a little medical help in the form of anxiety medication either. Perhaps your medical system also offers a counselor to help you manage through emotions. Or just come here and tell us about where you are and we can share back our experiences. Bless you.


Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 13, 2021 01:24PM - edited Jun 13, 2021 07:30PM by Aram

Mimidee, I am sorry you are here. The time between diagnosis and surgery depends on the ER/PR/Her2 status as well as tumore size. For triple negative and her2+ it is usually first chemo, then surgery. For me the time between diagnosis and surgery is going to be around 7 8 months as I am going through 6 months of chemo. Some people have surgery the same week they are diagnosed.

As others have mentioned breast cancer is not an emergency in the sense heart stroke is. Are you going to be followed in a breast center?

Dx at 40 Dx 2/5/2021, IDC, Left, 1cm, Grade 3, ER-/PR-, HER2+ (IHC) Dx 2/5/2021, IDC, Left, 3cm, Grade 3, ER-/PR-, HER2+ (IHC) Chemotherapy 3/9/2021 AC + T (Taxol) Targeted Therapy 6/1/2021 Herceptin (trastuzumab) Targeted Therapy 6/2/2021 Perjeta (pertuzumab)
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Jun 13, 2021 01:33PM AliceBastable wrote:

I found it easiest to get through the times between tests and appointments and surgery by deliberately doing fun things. I remember getting calls from my surgeon and I'd be out in some park a couple counties away, having a picnic. It really helps balance out any stress, plus you'll have some good memories to look back on besides the icky medical ones.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jun 13, 2021 07:25PM - edited Jun 13, 2021 08:23PM by exbrnxgrl

Distraction, distraction, distraction. That's the best strategy while waiting for things to move along!

My apologies to everyone who has posted on this thread if I turned the focus away from the op. My stats, listed in signature line, don't tell the whole story (you'd need a narrative for that!) but the conclusion that my mo and ro reached is that I was stage IV de novo, so stage IIB in my stats is the official result of my bmx pathology, which was upended just a few short weeks later. A grade 1 bc lesion on the bone doesn't go from nothing to 2 cm in a few weeks so it was there all along.I have been an outlier in many respects during these 10 years with mbc. Simply want to set the record straight and I don’t want anyone who is waiting on test results or treatments to believe I went from IIB to stage IV in 6 weeks. That’s not what happened.Thanks for your indulgence!

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jun 13, 2021 09:09PM Salamandra wrote:

I took time off work for radiation, although I think I could have worked the scheduling out. My job was quite stressful and my anxiety made it even harder. In retrospect, it was the right thing for me despite the costs. I would bicycle to radiation every day and the time felt like self care instead of super amped up stress, and my memories from that time are not unpleasant. I did wait to start taking time off until radiation began (aside from I think two or three days after my surgery).

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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Jun 14, 2021 02:00PM moth wrote:

Mimidee, where in Canada are you? There are some subforums for Cdns on this board if you need help navigating the system.

I was in school when diagnosed stage 1. Missed my finals as I was in surgery and recovering during that time. Ended up writing the finals a couple weeks later, just before starting chemo. I think some people like to keep working as it distracts them. For others it's just too painful to pretend everything is ok when it's not. So really, you have to just go with your own preferences.

Everyone, just know that this is the worst time - the time between diagnosis and getting a treatment plan. Once you see the surgeon and the oncologist and figure out what you're doing, then some feeling of control returns and it gets easier. This beginning bit is like the down drop on an amusement ride - it just feels very very out of control. Hang in there, it gets better.

I take weekends off

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: https://nevertellmetheodds2017.tumblr.com/

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone

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