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New diagnosis- so scared and overwhelmed...

awesty123
awesty123 Member Posts: 4
edited March 2023 in Just Diagnosed

Hi all- I am 51 and was diagnosed on January 20,2023 and just got scheduled with surgeon on February 14th. This was a routine mammogram, so total shock. I have calcifications so no specific lump. I was diagnosed from initial biopsy with invasive ductal and invasive lobular and DCIS. I am also triple negative which I had never heard of and really panicked when i looked it up. I had biopsies of two lymph nodes today that showed up on MRI one week ago.

I am in such a panic and know that I have to try and be positive, but I'm really struggling. I do feel like once I have a plan I can move forward. But right now I've been researching without all the information and its probably the worst thing I can do. Just need some encouragement! Thank you so much!






Comments

  • lw422
    lw422 Member Posts: 1,375

    Hello there. I hate the reason you find yourself here, but you've come to the right place. Almost all of us have been where you are right now, and it's terrible, and we understand every emotion you're having. First, please stop googling; a lot of information out there is dated or flat-out wrong. Rely on your doctor(s) and take advantage of all the knowledge on this forum. No one knows your illness and treatments like those who share the diagnosis and have been where you are now.

    I was diagnosed with IBC and triple negative (TN); that was two years and a lot of difficult treatment ago, and now I'm in remission. Things are not always as bad as they seem. The first couple of months are the worst, but honestly it does get better.

    Once your treatment begins and there's a plan in place, you will probably begin to feel more calm. In the meantime, if you need anti-anxiety medications please ask for them. I found them to be very helpful when my anxiety was out-of-control. Take care and my very best wishes to you. We are all in your corner.

  • maureen1
    maureen1 Member Posts: 87

    Dear awesty123... I'm so sorry you have to face this. When we are first diagnosed there are so many questions and not enough answers but they will come. I agree with lw422, Dr. Google is not your friend. The breast cancer community members you meet here will be a good source of information and hope. We've been thru the uncertainty and fear. When I was diagnosed I didn't know where to turn. I was not triple negative but I had positive lymph nodes so I was afraid and didn't want to scare my family. I felt alone until I finally connected with other breast cancer survivors. Fear, stress, anxiety, and insomnia are not easy to deal with so don't hesitate to ask for help or medications. I've been thru chemo, (lost my hair but it grew back) and had a bilateral mastectomy, I'm still on meds but now I am 10 years cancer free. I hope you find the information and support you need to get thru this very difficult time. Check the forums for tips and information and don't hesitate to reach out to community members - we're here to help (((Hugs))) Maureen1

  • awesty123
    awesty123 Member Posts: 4

    Thank you both so much for your responses! It’s amazing how alone one can feel going through this, but hearing other people’s stories certainly help me find some comfort. So thank you!

  • cookie54
    cookie54 Member Posts: 617

    Hi awesty, Sorry that you are now in the club that nobody wants to be in. I am triple negative since 2016 and still, powering on. I can tell you this yes ,it's scary when you read info about tnbc on the web. Some of the data is outdated, it is considered one of the more aggressive types but does respond well to treatment! From my personal experience from 2016 until now treatment for tnbc has much improved. There are more options now than when I was first diagnosed plus more on the horizon.

    You will feel better once you have your plan of attack, try to take it one hurdle at a time. You will get there! We are all here for you anytime. Big hugs.

  • melbo
    melbo Member Posts: 266

    it’s all scary as hell, and triple negative even more so, but it’s not an instant death sentence either. Just take one thing at a time (as best you can) and face each new obstacle as they come. Hopefully you can move smoothly from one treatment step to the next, reach remission, and then cruise through until they declare you cured.

    Get anxiety meds if you need them — I’m not an anxious person in general, but I’ve found that I still have scanxiety (anxiety whenever I have new scans or follow up appointments) to the point that I want something to take the edge off in the days leading up to appointments. This entire diagnosis is a marathon, not a sprint. Even with all the best outcomes, you’re looking at several months of treatment (depending on your exact treatment plan) and then a couple of years of steady follow ups, scans (mammograms most likely), and check ins.

  • awesty123
    awesty123 Member Posts: 4

    I honestly cannot thank you all enough. From the bottom of my heart, truly. I’ve been in a bad place the past few days, and the waiting is terrible. But knowing I am not alone, and sharing this with other amazing strong women is just huge. Thank you…

  • lw422
    lw422 Member Posts: 1,375

    awesty123--hugs to you. We never forget the level of anxiety that this diagnosis brings, but having people to share the scary path with us makes all the difference. You might check the sections of the forum that pertain to your diagnoses... triple negative, IDC, etc. You can find a wealth of information here, and plenty of people to "talk" to. We'll be here to help you along.

  • Hi Awesty123. Sorry, you had a reason to be here too as others have also said. While it sucks, I feel less isolated and alone after coming here for support and information. I am pretty new to being diagnosed with IDC, and I can relate to your worries. However, my cancer was not triple neg, and it took me a while to understand why ER, PR, and HER2 factors were important in treatment planning. I spent a few weeks in a bit of shock and still do, at times, feel that way. I talked to my doctor about my anxiety and difficulties falling/staying asleep. He prescribed medication to help with that, and I don't need to take it anymore. Although, I think it would be normal if I still needed to use it.

  • NoWhyToIt
    NoWhyToIt Member Posts: 15

    Hi and how are you doing since the last post? I stop by these boards every once in a while to say hi to new members of this big "club" and to try to offer a different narrative to cancer diagnosis. I remember being terrified--I was toppled by the diagnosis. I remember the call back to the mammogram office, the biopsy, the news, the MRI, the Pet Scan, the overwhelming anxiety as I discovered I had many nodes positive. Stage 3C. I had a young child and many hopes. Those days are etched in my mind. It is scary and difficult. But hey, please listen up.....for me, that was almost ten years ago. After treatment, cancer went silent and all that was left of it were those memories. Many of us are proof that so many of us get past it. And treatments for metastatic cancer have progressed from the stories of old. It's with great love that I say please try your best to not give in to fear. Try to take care of yourself and one day at a time and push those awful thoughts away and come back here when you need a lift.

  • awesty123
    awesty123 Member Posts: 4
    edited April 2023

    Thank you "nowhytoit" for checking in with me! From the time I got diagnosed on January 20th, it's been a bit of a whirlwind! I found out that the first doctor (gynecologist) who told me I had cancer, told me I had triple negative when in fact I did not. I am ER/PR negative, and HER2 positive. So that was a game changer for sure. I had 2nd and 3rd opinions because there were such huge differences in what each one suggested as treatment. And I'm so glad that I did! They initially diagnosed me at stage 2A. The area was 2.8cm, with calcifications. I had surgery on 3/22 (lumpectomy) and a sentinel node biopsy. The actual cancer part of the area they removed was less than 1MM. So, much smaller than initially presumed. I have had some complications with healing as one of my incisions opened up, and I had a lot of swelling and fluid buildup where they removed the lymph nodes. But now I'm almost 3 weeks post surgery and am feeling good. I go see the oncologist on 4/24 to confirm that they want me to go straight to radiation without chemo. That's what my surgeon is suggesting, but he wants to make sure the oncologist feels the same. And then they will make the decision of whether or not to put me on hormone blocking drugs after the fact. I have DCIS and ALH which apparently makes me a higher risk. All in all, I'm very thankful it's gone as well as it has! :)