TRIPLE POSITIVE GROUP
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Thanks ladies! My exchange is tomorrow! I will keep you updated
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shelabela - send me your friend's email address and I'll send her a nasty email!
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{{{{{{{{shelabela}}}}}}}}
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shelabela - wishing you the best on your surgery - and I'm sure you will be happy to come to the squishy side! Agree with the advice not to judge your results based on what you see right after surgery - takes a bit to settle into the final look.
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Shelabela. Thinking of you, I can relate. BiG hugs!
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Just stopping by to send good wishes to everyone.
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Hi everyone,
I'm new to this, but the threads on this site are the only thing I find myself/allow myself to go to on the internet for strength, worry, or reassurance. Sometimes, I'm not even sure what I'm looking for. Maybe just an outlet.
I'm 26 years old. About 3 weeks ago I was diagnosed with HER2+++ invasive ductal carcinoma. My left breast has a ~1.7cm lump, which was only caught because I felt sharp, burning pain in my nipple two days in a row and after seeing a GP, who confirmed there is a lump and after several appointments for an ultrasound, biopsy, and mammogram, it was confirmed to be cancer. Yesterday, it was confirmed that there is evidence of cancer in my left axillary node as well after it was biopsied. The cancer in the node is HER2-negative but ER+/PR+. Everything I'm learning, and experiencing is new, and absolutely terrifying. My ki-67 for the breast is 12%, and for the node it's 10%. Everything is confusing and inconsistent and just a different language to me.
Since discovering this lump, I've been told "it's probably just a fibroadenoma, or cyst...nothing to worry about." Then I got diagnosed and I was told, "it does not seem likely that it has spread", but then I found out it did. I still have the genetic test results to wait on, and a PET CT scan on Friday, and I keep hearing, "it's probably nothing...", and I feel like I'm going to lose my mind because I feel like every bad card has been dealt to me. Has anyone else felt this way? Like this feeling of doom sitting on your chest, and worse news is still yet to come? I'm so terrified of hearing I have mets elsewhere. Are there women out there with mets past the nodes with success/survival stories?
It feels crippling and keeping me from thinking positively, as much as I would like to. If only hearing, "you have cancer" is the worst the news can get- no one tells you that it isn't.
I started chemotherapy (TCHP 3x a week 6 times) on Friday.
I hate feeling like the clock of my life has officially began ticking, especially at 26. Everyone around me seems so positive. Some days are easier than others...
Would appreciate any insight, experience, and/or prayers.
Thank you so much.
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hello Ladies,
Shelabela, crossing my fingers for you! I am absolutely positive that surgery will go perfect, and please try to think about how much closer you get with this step to leaving all this behind (well, as behind as possible). All the other things will sort out, they have to. You need your strength now, so try to not stress about things too much. Great you finding help, I was also thinking that I should find some professional counselling. My mum is not doing well, we have little time left, and my heart breaks. I just think I might need someone to help me cope, as I think this might be just too much to handle on my own. Sending you big hugs!!!
For everyone else, hugs to you and even though we need to avoid the sun, hope you all enjoy a bit of the summer. I just said to my DH this past weekend as we went to shoot a wedding, and it was windy, how much I appreciate that this year I don't have to worry about the wind on wedding days. Last year my biggest fear was that it would blow my wig off... 😁 Oh, theselittle things that will get better for all of you, sooner than you think!
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xYoungandScared - I remember at the beginning when I was diagnosed, things just seemed to keep getting worse. The positivity of everyone around me was really annoying. It's easy to be positive about someone else's cancer. I always wanted to be like "you realize people still die from this, right?" because it seems like people don't realize that. But negative people are even worse. I had to avoid my mother like the plague for a while because she would call me up and just want to cry about my cancer and ask me why this kept happening to her (yeah, I know). In her defense, we lost my dad to cancer a year before I was diagnosed, so that so far had been her experience with cancer. I'm sorry you have to be here, but I hope we can offer some comfort. I was 41 at diagnosis and knowing I have a whole lifetime to worry about recurrence is kind of daunting. Cancer sucks at any age but given the choice I would have rather this come along when I was 80.
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oh xYoungandScared...my heart breaks for you. What a tough thing to deal with. I had just turned 40 when diagnosed. I didnt even have a lump...I just went for a mammo like they told me too. Like you I kept getting told it is normal to get asked for more pictures it's normal to need a biopsy, most biopsies are benign, until...it wasn't benign. It was IDC! 4 a while I stopped trusting people because they kept telling me it was fine and it wasnt. It wasnt! Later on I realized that it's just not super common to happen when young, so doctors tend to downplay it til it is something.
There is a board on here for young women with cancer. It's super helpful. And we triple positive are super helpful too! You will likely have some decisions to make. We are here to help!
We will get you in ways no one in the real world will. PM me if u need to!
-Tres
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Hi everybody. Jaboo, I recall the multivitamin was ok but only if it was not a super vitamin, that is with high doses. At the time, my nutrition was awful because of reflux. The idea was to get sufficient nutrition, not really to supplement with higher doses of various vitamins.
Tld2017, a few years ago, I had vertigo and was diagnosed with benign positional vertigo (BPV). An MRI of the brain was ordered to double check .The eppley maneuver at physical therapy solved my problem and the vertigo went away. Fast forward and around my 5th TCHP, I had vertigo which was not caused by BPV. A brain mri was clear. High anxiety for sure. A year has gone by. I am able to handle things a bit better now which is not to discount your valid concerns. We have all been there. Hope it resolves soon.
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xYoungandScared - I can totally relate - I was told for a whole year my lump/thickening was nothing - just extra tissue - then when I finally had a 2nd radiologist followup (a whole year later) he finally listened and thought it wasn’t normal - then had breast MRI - then IDC Dx - it’s just frustrating when you know something in ur body isn’t right but the docs won’t listen (I think because I’m 38 it was assumed it was nothing serious)- 3 doctors before my diagnosis reassured me it was nothing and I was feeling like the crazy one cuz I kept dwelling on it.
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xYoungandscared, of course you are. All these emotions and fears are very normal. Everyone will tell you to stay positive. You may not be ready for that. It took me months to get there and a low dose of Prozac helped. Lean on all resources available - nurse navigator, counseling - whatever it takes. Take each step, one at a time. Post often. Ask as many questions as you need to.
It’s hard early on with the waiting to get the appointment set, the having the test, the waiting for results. Shortly, you will have a complete picture of your situation and a treatment plan. The best things you can do for yourself are 1.) drink water and 2.) exercise. Walking may seem simple if you are very active, but it helps considerably.
As for prayers, well it’s been a while, but since you asked, I remember how that works and I will give it a go. Sending lots of support. You are not alone. You are in the club. It’s a special club. As the newest member, you must send us a singing karaoke video. No. I’m kidding. Sometimes you will need to laugh. Do it when you can.
We are all here to help.
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A friend also just showed me a print-out from her doctor that said that vertigo is made worse by zertex. So consider what allergy meds you may be taking. Also more common in women over age 60.
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Shelabela, yes, they put me on Meclizine, and I think it is helping. I tried the exercises today so hoping that will help too. I discounted them initially but after hearing you say that they helped you, I guess I should try to do them three times a day as prescribed! I am sorry that life is hard right now - big hugs to you. And I am glad you ditched the friend who said stupid things!
Taco, I'm 52 and not taking any allergy meds so that's not it. Still hoping it is just something that is happening for no big reason...
Suburbs, I just had the brain MRI in February but I'm still nervous about it. I can't help but think that I'll probably be worried about every singe odd thing that happens for the rest of my life. Being diagnosed with cancer changes everything. Maybe that feeling will change but it's only been 6 1/2 months since diagnosis.
Not quite halfway through daily radiation and my left boob is turning a lovely shade of dark pink. The radiologist told me today that I have "two strikes" against me: 1) just finished chemo and 2) very fair-skinned. I am choosing positivity! I will assume that I will get through rads just fine with minimal burning!
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thanks for sharing. My mom is just two weeks today from her diagnosis and chemo starts on Tuesday. Followed by surgery in mid winter and then probably radiation. ILC and triple positive as well.
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YoungandScared, oh, I'm so sorry for what you are going through! I can relate somewhat, as I see myself as fairly young for this, being 38... I also had the feeling everything is just getting worse and worse... biopsy showed grade 2, her2 ++ and Ki67 of 50%... when I saw the pathology after op I just went numb, grade 3 and Ki67 of 65% and her2 got confirmed... and a second operation was neccessary due to close margins. just worse and worse.
but hang in there - the first few weeks are terrible... you are just starting to learn about this BC world. and what is important you are in treatment already! you are fighting the beast! You know, the odds are very very good with your kind of tumor. just a page back here, we were discussing that the triple positive tumors have many treatment options which greatly improve the outcomes.
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youngandscared ...
If it is any comfort ... the women in this forum could have written about the emotional roller roaster you are riding except for being 26 years old. It is up and down especially in the beginning as JaBoo wrote.
As Suburbs wrote use EVERY resource available. I never thought I'd end up seeing a Psychiatrist (since I was Wonder Woman and could do everything) but I do. Like she also wrote walk and hydrate. Exercising and walking can be very beneficial. For me, walking became the one thing I could control on my own during this journey.
This website (breastcancer.org) has tons of researched information available to you. Use it. I would ask that you stay with research and not just any Internet link.
Hapa wrote about avoiding negative people. Fortunately, you are going to find out who your real family and friends are. You may lose some people you thought you were close too. Accept now that you can not fix stupid. People will say stupid things not to be hurtful but they just don't comprehend what you are going through and do not know the right thing to say.
BTW, some medical people will say stupid things also. If you are ever being treated (even something like getting labs) and it does not feel right, stop it. And make sure anyone who touches your body washes their hands first. TonLee who started this forum has great advice in her opening. Read and study it. She says that long after your treatment has ended and all the medical professionals are gone, you will be left with your body and the decisions made. This is your body. You make the decisions.
You asked for prayers. I did and will continue. I found this book very helpful. It is "Don't Waste Your Cancer" by John Piper. I urge you to focus on the life lessons this cancer journey will teach you.
I struggled last night with a response to you. I waited until this morning to write to ensure I had my words correct. I was 62 at diagnosis (that is twice your age plus a decade). Cancer taught me life lessons that I did not embrace when I was younger. As I look back, I had opportunities to learn these lessons but I was too busy making a life instead of living life. You have your whole life in front of you and with this journey's lessons, I believe you will have a wonderful life you could nave never dreamed of!
Suburbs' singing karaoke video is a pretty good idea!
I hope this note is readable and fairly error free. I made hot dill pickles last night and can't get my contact out of my eye because my hands have pepper residue. What was I thinking?
Vicky
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Thank you everyone for your kind words, and thoughts. I intend to fight for my life as hard as I can.
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Awww Vicky that is incredible advice. Thank you.
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shelabela,
Sorry to hear about all the problems but very glad you are getting help. As for memory I can tell you as someone who has always had a very sharp memory, then going through chemo last summer and feeling like I was crazy when I couldn’t remember anything, thought I for sure had early Alzheimer’s from tne chemo. It definitely is getting much better. My family laughs when I can remember things from when I was in prek( I’m 56) so it really really does get better. I’m also 8 months after my BMX with Diep and getting more and more used to it every day. I blocked anyone from my phone last year who even mentioned death or reoccurrence issues, that’s for me and my dr to discuss and no one else.
It does get better
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@coachvicky, thank you for your words. I needed time to think about what to say back to you. I will try to utilize all of my available resources. I'm still learning more every day about what I have, how long I've possibly had this, and getting past the "why me" feeling, and accepting, "this is happening to me." These last 3 weeks have felt like a big blur. I'm hoping, and praying, and putting a lot of faith in believing that I still have a whole life ahead of me to live. As I mentioned, some days are easier than others. The statistics I read, the stories I hear and the fact that there are very few women my age that can relate feels so alienating and scary. I don't want my parents to bury me. I want to get past this, and I want the news I keep receiving to simply stop being so bad.
I really appreciate your thoughts, advice, and your prayers.
As for everyone else that left some nice words, advice and thoughts: thank you so much.I appreciate your help and insight to help me not feel as alone in this process.
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Hey xYoungandScared, I was 33 when I was diagnosed last fall. I also felt really alienated being so young. Have you found Young Survival Coalition yet? They have a private facebook group you can sign up for (they'll be in touch with you to get you added). It helped me to see other women closer to my age. https://www.youngsurvival.org/forms/ysc-private-fa...
If you're in the US, they also have local meetup groups across the country. You can find a list of them here https://www.youngsurvival.org/meet-in-person
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Hi youngandscared, I was 31 when I was diagnosed in January. I know exactly how you are feeling. I have gone through so many ups and downs on this journey. I have 2 more chemo treatments left and then I start radiation. My oncologist has treated me very aggressively because of my age. That gives me a lot of comfort most days. Please just know that the fear and anxiety will get better. Please feel free to reach out if you have any questions or just want to vent
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Youngandscared,
Sorry you have joined us but this group is amazing. Remember to take someone to your appointment to take notes, i found out they throw a lot of info at you. It helps to write it down then you can look it all over at your own pace. Also remember that you are in charge of your body.
I had my exchange surgery yesterday. They did lipo and fat grafting also. My PS took from my legs, i am currently wrapped up like a mummy. From chest to toe. I was also reminded to not "look" until her says I can. I am to shower and let the water run over me but to not actually touch. Lol
Have a great Friday ladies
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shelabela, thanks for sending an update. I hope you have a speedy recovery. Please take it easy.
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Thinking about you and sending calming vibes to Youngandscared and to Shelabela a speedy healing
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Shelabela ... Thanks for letting us know how you are doing. Please don't look and follow what your PS says. It will be worth the wait.
Have a great weekend everyone!
Vicky
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Diagnosed triple positive with poorly differentiated margins. After two surgeries, margins clear. After speaking to one onc, he recommends T+H (plus rad and aromatase inhibitor) the other says (TCH (plus rad and ar). The second therapy is so much more aggressive. Any thoughts/stories on which one you did, I would love to hear them.
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beachmom - what size is your tumor and what is your nodal status? This would potentially inform chemo regimen choice.
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