Just Diagnosed- Get Prepared
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Rosabella Made your link usable. Unless you see a link turn blue it is not "hot". To make a link hot ---Once you post it----hit the forward key arrow and then the backward arrow key , then hit enter. Others may have a way of making a link connective. This is my way.
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Just diagnosed with breast cancer last week. stage 3 Inflammatory. (one has spread to lymph node).
age 35. have 2 kids. vegan.
Pathology report said it 's moderately differentiated invasive DCIS came out on hormones.
swelling1:
ER : positive >90%
PR: negative <1%
Her2: negative
swelling2:
ER : positive >90%
PR:positive >5%
HER2: negative
swelling3:
ER : positive >90%
PR:positive >10%
HER2: negative
Surgeon is sort of advising me to start with chemo and then check on surgery/radiation.
any advises please?
pray for our family
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Dear crsathish,
Welcome to the BCO community. We are sorry about your diagnosis but glad that you reached out to our members. It looks like you are saying that you have Inflammatory Breast Cancer and if that is the case you may want to post in the Inflammatory Breast Cancer Forum where you might receive additional help. You also may want to download the brochure on your Pathology Report that you can find at the imbedded link. Such might help you to interpret the findings. We hope that you will stay connected here and benefit from the support and information that is shared by our members. Keep us posted. The MOds
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Whether you're the one fighting, or you know someone who is fighting, we're all in this together. It's not always about finding a cure, we also have to promote awareness and possible prevention.
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Sassy, thank you so much for your post! I just received my diagnosis (Oct 19th) and it was a total shock. Your post gives me such great direction for organizing my thoughts and actions and keeping things straight through this process. I so appreciate your generosity!
Moll
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Dear Conroyungerecht,
Welcome to the BCO community. We are sorry for your very recent diagnosis but glad that you have reached out to our members. We hope that you will find lots of support and helpful information here that will ease your way. Let us know if we can be of help in your navigating the boards. The Mods
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Bump
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bump for newbies a bump means this is a thread that may have value for you but is not necessarily a conversational thread. Generally, the Mods watch it and give you advice where to go. BUT the things in the topic box are useful.
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bump
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As a scatterbrain with zero organizational skills, this thread has given me more anxiety than my diagnosis!
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bump.
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I'm scared0 -
I found the binder and table of contents extremely helpful and have worked on it since her May 9th, 2019 diagnosis. That said it became unwieldy rather quickly so I started searching for and inexpensive technology solution which was frustrating. While I have a computer, I do not have a good scanner, nor text recognition software. What's the point of scanning if you are unable to electronically enter a word in a search box like 'nausea' and find all the documents that have that word. Perhaps a poor example as that word is ready for retirement. Full disclosure I am a technologist and used to have several PCs in my home, but years ago became tired of supporting my own technology after supporting someone else's all day long so I switched to Apple. I'd had an iPod for years and eventually work gave me an iPhone, well now I have and iPad and my own iPhone along with my iMac. For the solution I arrived at and will detail here you only need either an iPhone or iPad, the later being easier to work on.
After quite a bit of research I settled upon two applications that check an awful lot of boxes and have made life significantly easier for us and I hope should you try to implement what follows, will help you too!
The first app is Scanner Pro by Readdle <Link was here>. With Scanner Pro you may use your iPhone's camera to scan documents. It also allows you to perform text recognition (OCR). The great surprise is Scanner Pro also allows you to send a fax for 99 cents!
The second and last application is called Notability <Link was here>. Notability will run on several operating systems, so even if you do not have a Mac you may run it on a Windows computer. Notability allows you to create notes. A note can be one page or many. Notability may also record audio which maybe saved with your notes. Notes may be organized under Subjects and Subjects my be grouped under dividers. For me one Divider called Breast Cancer was plenty. Under Breast Cancer I created the following subjects in alphabetical order; Baseline & Genetics, Chemotherapy, Claims, Contacts, Disability, Diagnosis, EoB, Logbook, Medications, Medical MY, Nutrition, Port and lastly Prescriptions.
From Scanner Pro I scan a document. At the bottom of the screen the name will default to 'Scan Month, Day, 2019 at Time.' Depending upon what the document is ai may or may not keep the date and time, but I always rename Scan to something that makes sense, like Docetaxel (Taxotere) Chemotherapy - side effects. This document listed out all the side affects of Taxotere. Once renamed I select the three dots in the upper right corner and then select Recognize Text (OCR). Once that is complete I hit Share at the bottom of the screen. Under the Share As pop-up I scroll until I see More Apps and select More Apps. More Apps pops up and I scroll over to Copy to Notability. Notability will launch and bring you to an Import screen. At the bottom of the Import Screen select Create new note. On the bottom right of the next screen you should see one of the subjects you created. Select the Subject to see your full list and then select the Subject you would like to import to. This will take you back to the Import page, then select Import at the top right corner. Your document will display in Notability right away and now is part of your electronic notes and is text searchable.
This whole process takes far less time than it does to read this last paragraph describing it. If this sounds appealing I would encourage you to visit the links above and read a little about the apps and perhaps install them. The costs are pretty low from the Apps store and for us this became an invaluable resource we have wherever we have an iPad Phone or Computer. You may synchronize multiple devices by storing your Notability info in iCloud. To get the information to a PC, you may back up the info to DropBox, then access DropBox on your PC, followed by installing Notability and then performing a File Import.
If you are having any issues with this, bribe your nearest tween for some help>
Great courage, strength and perseverance to all of you and your families!
Seamuis
Apologies, I had to remove the links to post this, have not been around here long enough to be allowed to post links!
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I was just diagnosed with encapsulated papillary arcinoma of the breast, with the PET scan stating "a 2 cm solid mass lesion with SUV max bw of 6.7 in the left breast" and the scan also revealing a "2 cm irregular pulmonary nodule with SUV max bw of 6.4" and a "subcentimeter solid lesion with SUV max bw of 4.8 in the superficial lobe of the right parotid gland which may represent benign or malignant parotid tumors."
I met with my pulmonolist yesterday who said not to bother with lung biopsy, just take it out (meaning a portion of my lung). I am meeting with a breast surgeon on Monday and a geneticist/oncologist on Wednesday, and I may make a second appointment with another onocolgist, as well.
I am getting no real direction from any dx and, in fact, my family doctor who has received all the reports hasn't even called me. When the radiolgist who did the breast biopsy called me to tell me I definitely had breast cancer, I sat in my car and just didn't even know what to do -- do I see an oncologist first or a surgeon first. After talking to a couple of people, I still got mixed results so at least I have two things scheduled.Anyway, one of the things I would like is the binder that you referenced "sent out by the breast cancer society" I've tried to look it up, but haven't found it. How do I get it? I tried to set up a binder based on your outline, but any materials I can get would be helpful.
I guess my breast cancer surgeon can talk about the lung cancer possibility/surgery with me, but any direction in that regard would also be helpful.
I did have a left parotidectomy in 2010 because the tumor biopsy was inconclusive. They turned out to be benign Warthin tumors, so I assume that's what's now happening in the right parotid gland, but that's something else I guess I need to discuss with surgeon.
Oh, and I'm smoking like a chimney but yes, I know I need to stop.
Anyway, that's my story and I'm sticking with it.
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Welcome, kitzelover1! We're so sorry you find yourself here, but we hope you find this to be a source of support as you begin down this road. It's the club no one wants to join, but you're in good company here! Please keep us posted once you've met with your doctors and have a plan in place, we're all thinking of you!
The Mods
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Hi Kitzelover, so very sorry that you find yourself here. Please take it as slow & easy as you can, even though it's difficult. Relaxing techniques such as breathing techniques, yoga & meditation can help.
Please visit the Papillary Carcinoma page on this website. You can find the thread here: https://community.breastcancer.org/forum/137/topic...
You may wish to contact the breast cancer nurse navigator at your hospital to help guide you thru the protocols and medical choices. Best wishes to you.
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Hello, I am newly diagnosed IDC on 12/23/19. First time posting. I'm going thru info gathering phase and a little overwhelmed. It took me 3 weeks to reply. I had Biopsy of axillary node and it was positive. My Dx is Invasive Ductal Carcinoma, 2.6 cm, grade 2, ER/PR positive, Her 2 Neu negative, Right sided with metastasis to one right lymph node. I scheduled the surgery for 1/29/20. Meeting the surgent tomorrow. Not sure what to ask. Any ideas? I have not seen MO yet.
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milaheta, sorry you find yourself here, but you are in the right place for support. I don't think you need to worry too much about knowing what to ask, as it will be more a case of the surgeon telling you things. Try to take someone with you to take notes, as it's hard to take everything in.
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Thank you for your respond!! My husband and my friend are coming with me today. The waiting is the worst!
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Thank you so much for this wonderfully informative post! I just joined tonight as I just received my biopsy results and this post was the first I've read. Your post gives me hope that I will find support and info here, and that's what I desperately need, so thank you so very much!
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ChrisJack1, we're sorry for your recent diagnosis, but wanted to say welcome to the BCO Community! We're so glad you found this thread helpful. Feel free to start your own new topic to open up a new discussion if you want. We're sure our members will welcome you with open arms too! Good luck, and please come back to let us know how you're doing!
Warmly,
The Mods0 -
Wow thank you so much for the reply! I think I finally may have figured out how to find replies but I'm still learning. I am looking forward to my first replies to any of my posts. I have my mastectomy scheduled for September 16 and plan to have an expander placed under the muscle at that time. But now, I'm questioning that decision and wondering if I should get a bilateral mx for mostly symmetry reasons and a bit of paranoia. I do know all the arguments against such a decision and I suspect I will be met w heavy heavy reaction of this idea from the bs and ps.
Just want to say what I love about this community is how truly supportive folks seem to be and how substantive and thoughtful the posters are. That's a big deal in my book, and quite surprising.
Also a shout out to the mods like you for the reach outs! Very very cool. Helps pull us wall flowers out to the dance floor
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bump
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I was diagnosed two weeks ago, and man has my world been rocked. With my dense breast tissue, I figured bc was in the cards for me, but I thought I'd have about 10+ years. But here I am today. I've been reading a lot of posts and learning so much.
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whencanirun: Hi. Hang on there, the rocking takes a long time to slow down. BCO is a great place to go. I am going to put a pitch in for my all time favourite place/thread - that is Mel's living room "My Husband, My life...." Pretty much anything goes there in terms of what you want to talk, rant, laugh about. BCO is full of the most wonderful ladies (and a few men!~) that you could ever hope to have a connection with
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I was just diagnosed last week and am meeting with an oncologist for the first time tomorrow.
Is there a guide or link about questions to ask for a first visit? I want to ensure that I get the most out of this appointment and that I both feel fully heard and get all of my questions answered. I am guessing there are probably things I should ask that I don't even know to ask about!
Thank you so much for pointing me int he right direction!
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Hi All, we're jumping in to remind you that we host moderated VIRTUAL MEETUPS for people in treatment for breast cancer.
Register here and you'll receive a zoom confirmation with all the information!
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Go to page one to get the value of this thread. The absence of the reason for any of the threads negates the reason for discussion of anything on that thread. Seriously stupid for the deletion of the thread header. This used to be a valuable thread. Without the thread header it makes no sense.
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Click to go to page 1
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