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Topic: Just diagnosed yesterday

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

Posted on: May 10, 2018 08:18PM

RenoNV wrote:

Received word last night from Radiologist that biopsy shows Invasive Lobular Cancer ... Setting up appointment for breast surgeon today .. I feel like I have hardly had time to breathe it's so overwhelming .. How do you deal with this ??

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May 10, 2018 08:43PM bluepearl wrote:

So sorry you find yourself here but you will be glad once you get going. Everyone deals with it differently. Me, shell shocked.I live near the woods, so for once I wasn't scared of bears and walked around crying, in a daze. It was all so awful. But once you get to know where you are, treatment plans and get everything underway, it becomes easier. My second diagnosis was easier to take as well. You will go up and down like a roller coaster but you WILL get through this. Find a soft place to fall...spouse, friend, support group...do not try to do this alone. My thoughts travel with you on this journey and hoping for the best tumour profile possible!!! ((((HUGS)))))

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/12/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/10/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/18/2013
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May 10, 2018 08:56PM RenoNV wrote:

Thank you bluepearl ... I don't live in the woods but you describe how i feel completely .. I thought after the few hours of sleep I had that it was a bad dream .. I'm still in " she'll shock" as you said and find myself in a daze .My husband and children are my "soft place" as well as rock as I just told my adult children this morning .. but the tears continue when I'm alone .. Hopefully I'll see the surgeon soon .. Thank again for the hugs and support..

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May 10, 2018 09:32PM Moderators wrote:

You aren't alone, and we're glad you found our site. Everyone is here for you Medicating

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 10, 2018 10:37PM beach2beach wrote:

Sorry you have joined this club but welcome. It is so overwhelming. I found out on a Friday and cried all weekend off and on. All the "what if's" flood in too. You wonder how you function, but you do. Once you get all your answers on size, er/pr her2 factors, etc, and begin to form a plan, it becomes somewhat more manageable since you begin to get some control back. Have someone go with you to your appts if possible, spouse, friend. An extra ear is worth it. I didn't and I couldn't remember a thing. :) You will get through this. Keep yourself distracted when possible, and if sleeping becomes a problem with anxiety, don't hesitate to ask your dr for something to help you through if needed. We become wired from all the adrenaline but so very tired and can't always get or stay asleep.

Hugs to you and please let us know how it goes after your appt.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 10, 2018 11:06PM MiCyn wrote:

I was recently dx April 25th ... I felt exactly the same way after that phone call from my Dr..It just didn't seem possible...I was fine the 1st day, but a mess the next.. I think for me, once I had my consultation with BS 4days later, I started thinking..I can do this, almost like survival mode..The more I came onto this site & read so many encouraging posts, the better I started to feel in terms of being able to get through this. I still have a long way to go. I received call today saying my surgery is scheduled for May 22nd ..It seems like forever since the dx, but it's only been few weeks..I'm Sooo anxious to get this surgery over with, and move forward with it.. I have chosen lumpectomy/radiation ...Hang in there !🤗 Cyn

Dx 4/25/2018, IDC: Papillary, Left, 2cm, ER+/PR-, HER2- (IHC) Surgery 5/22/2018 Lumpectomy: Left
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May 11, 2018 04:41AM RenoNV wrote:

Thank you beach2beach ... Although this is not a club you want to be a member of the caring , love , encouragement and support from everyone is beyond heartwarming ...Everyone has walked the same path receiving their diagnosis and it's good to know I'm not alone ..I feel the same way I am so tired but not sleepy , my brain is in a fog and I am having trouble concentrating ... Hopefully when I see my BS things will become alot easier to understand instead of being in this uncertainty now ... Hugs to all you brave women ❤️

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May 11, 2018 05:44AM JKL2017 wrote:

RenoNV, just want to add my welcome & echo the advice above. Like you, I was diagnosed with ILC. Yes, it feels overwhelming at first but you will get through this. Once you consult with a BS you will develop a plan & can start fighting. In the meantime, draw strength from those you love. And don't hesitate to come here for answers, advice & support (or just to vent!). Please keep us posted. Hugs to you - JKL

Dx 2/2/2017, ILC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/7/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 3/19/2017 Multi-catheter: Breast Hormonal Therapy 5/23/2017 Arimidex (anastrozole)
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May 11, 2018 06:17AM ThreeC wrote:

RenoNV- Welcome to one of the warmest places I have visited. The breast cancer train ramps up for us and travels at speeds that are overwhelming at times. I can't stress enough how supportive everyone is. I alternate from being stoic to being ridiculously flippant. My advice to all newbies is to make yourself a notebook. Keep/ask for copies of all your Lab results/ scan results/business cards from everyone you talk to, Everything is beyond new to most of us. Terminology/faces/buildings and machines are all overwhelming at times. Your emotions and anxiety levels change and you wonder at times how strong we can be. Most of us that come here find reassurance, hints, confirmation and simple hand holding friendship as only another person on the train can give. I put a virtual card in your pocket with well wishes and a piece of dark chocolate. I eat a small piece because it's better than any drug!

Dx 4/11/2017, DCIS, Left, 3cm, Stage 0, Grade 1, ER+/PR+ Dx 5/23/2017, DCIS, Left, 5cm, Stage 0, Grade 1, ER+/PR+ Radiation Therapy 7/20/2017 Whole-breast: Breast, Lymph nodes Hormonal Therapy 9/13/2017 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 11, 2018 06:45AM RenoNV wrote:

Thank you MiCyn .. You are so right this site is so full of positive thoughts and support .. My husband and children have been wonderful and so supportive hearing this unwanted news but at the same time this site offers people who are actually living this as I am and understand deeply ... Best of luck to you May 22 and please update how your surgery goes ❤️🙏

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May 11, 2018 06:53AM RenoNV wrote:

Thank you JKL2017 .. It's only been a day since I received my dx .. but between my family and all the amazing people here I am starting to think I can do this .. it's still so new and scary .. At this point I think when I see my BS and have a "plan of attack" so to speak I think I will feel more in control of my journey .. Now , if I can only sleep and turn off my brain 🙄 ...** Hugs **

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May 11, 2018 07:00AM RenoNV wrote:

ThreeC ... Your analogy of the "Breast Cancer Train " hit the nail on the head and this is one of the warmest and positive places I have visited ..Thank you and everyone for all the encouragement and valuable hints you have given .. This is a place I never dreamed of being as I am sure everyone else feels but I am so thankful it exists ... Hugs to everyone ❤️

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May 11, 2018 08:35PM claireinaz wrote:

RenoNV, join us or at least explore the ILC discussion board, too. ILC is a bit of a different animal that the more common IDC, and we share a lot of information specific to ILC there that you might find helpful and even encouraging, which is what you need at this moment!

I will tell you what my b.c. mentor and friend told me when I was dx, in shock, and could barely function: you will get through this. It's a bump in the road of your life, but it will be in your rear view mirror in time (although if you're like me, you might stare back at it from time to time). You are going to be okay.


Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 11, 2018 10:55PM RenoNV wrote:

Thank you claireinaz so much I will definitely explore the ILC board .. I googled a little about ILC to try and better understand but it was overwhelming and I stopped ...my brain is not retaining much right ... I love the support I have received from everyone who has walked this path ..Thank you, Kris ❤️

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May 12, 2018 10:52PM Tess1962 wrote:

Hi there,

I was diagnosed with stage 2a invasive infiltrating ductal carcinoma of the left breast. I received my diagnosis on April 6th and I had my lumpectomy last weds, May 9th.

I am having more pain than I expected. The support bra definitely helps, and the ice packs are a must. I'm on Norco every six hours. Today is day three and I feel really horrible. Running a very low grade fever of 99 but Mostly achy in every joint in my body.

Did anyone else have this joint pain? I'm talking wrists, elbows, shoulders, knees, ankles.

Taking a shower certainly helps. I was just so sure i would feel better by now and it's a lil depressing.

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May 12, 2018 11:16PM RenoNV wrote:

Tess1962 I'm so sorry you are having a tough recovery .. You had your surgery the same day I found out about my ILC ... I see my BS on May 23rd for consult and treatment plan options etc ... I sincerely hope you start feeling soon .. Please update when you are able and I hope someone is able to answer your questions .. I appreciate you sharing this *hugs*

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May 13, 2018 01:19AM Moderators wrote:

Hi Tess, and welcome to Breastcancer.org,

We're so sorry for the reasons that bring you here, but we're really glad you found us. As you can already see, our community is full of amazing members always willing to listen, and share advice. We're sure others will be by shortly to weigh in with their thoughts and experiences. We hope you get some relief soon and start to feel better! Please check back in and let us know how you're doing!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 13, 2018 11:50PM Tess1962 wrote:

Today is day 4 post op. Last night I slept great for the first time since surgery. Today I am having tummy issues. Diarrhea and vomiting. I didn't take any meds today. Feeling like I may have a bug. I see my Dr. On Tuesday and trying to go back to work Weds.

How long have most people stayed off work for lumpectomy?

Thank you for the warm welcome and for being here for me.

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May 13, 2018 11:56PM Imara77 wrote:

Hope you feel better. Work helps to keep you focused and stop your mind from wondering so hope you can go back Weds.

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May 14, 2018 02:04AM Meg101 wrote:

Hi Tess, I think you may have a bug. You should let your surgeon know about your low grade fever, aches, and stomach issues. This is not normal for the healing process after a lumpectomy. Others on this forum may want to chime in if I'm wrong. If it's just a bug, it may resolve on its own, but just in case, do let your doctor/nurse know. Hope you feel better tomorrow.

Dx 7/14/2017, IDC, Left, 3cm, Stage IIB, Grade 2, 3/23 nodes, ER+/PR+, HER2- Surgery 8/11/2017 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Chemotherapy 9/18/2017 AC + T (Taxotere) Radiation Therapy Whole-breast: Breast, Chest wall Targeted Therapy Hormonal Therapy Arimidex (anastrozole)
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May 16, 2018 01:51AM Tess1962 wrote:

hi there,

I did end up back in the hospital with a bug and lymphedema. Just got home a bit ago. Feels like 2 steps forward 3 steps back.

I have a LOT of swelling under my arm where my nodes were removed. Having my fluid pocket aspirated again tomorrow and then starting physical therapy with a lymphedema specialist.

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May 18, 2018 04:01PM - edited May 18, 2018 04:03PM by claireinaz

I had a lot of fluid buildup and wound up with a drain for 3 weeks after my lumpectomy, which was inserted 3 days after the initial removal by my surgeon. You may not have long-term lymphedema; could it be fluid build up from your surgery? I hope it's the latter. Let us know.

ILC has some different qualities--a few things to know. It has a higher tendency to be multifocal, meaning if it's in one breast, the other might have some problems that haven't manifested yet. It hides from the typical mammogram more than IDC or other types of bc--couple those two facts with dense breasts, like I had, and you can see why I chose to get rid of all my breast tissue. But it's also usually a bit slower growing, less aggressive (when I found that out I nearly cried with relief since I had 6/11 positive nodes and needed some encouraging news, if only that). Often it doesn't respond to typical chemo as well as others but I wanted it all, even the low percentage of success of chemo on ILC, so my oncologist gave me the works (see my sig line for my treatment). It also seems to be more hormone + meaning it can be treated with anti-hormonals, which is a good thing. Finally, it seems to recur later rather than sooner, so followups are important. All these things are probably meaningless to you right now, I get that. If you have specific ILC questions, we are over on the ILC board and will help you. Lots of good people there who have so much knowledge.

Reno and Tess, let us know your pathology and treatment plan when you have it in place. We care.


Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 18, 2018 05:17PM RenoNV wrote:

Thank you claireinaz for all your information I needed that especially since I dont see my BS next Wednesday, May 23 .. Right now I have been in the unknown zone which is a dreadful please to be where my mind goes every where . I never had a lump but architectural distortion and hypoechoic ill defined area so the biopsy was a large area of cells .. from what I understand this is typical of ILC ?? I do know I am ER/PR positive (95%) and HER2 negative... Ive done some reading on that and guess it is a good like you said ...I'm thinking of BMX with reconstruction at this point ... I want it all out .. The lymph nodes are still unknown and I won't know till after surgery .. Thank you again , Kris

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