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Topic: Need help with this crushing fear of Triple Negative

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

Posted on: Nov 24, 2021 01:45PM

Nikko1963 wrote:

Yesterday I was diagnosed with Grade 2 IDC. No information yet on the receptors. The anxiety I feel today is really getting to me. I'm taking care of business, but I just feel paralyzed with the fear I will be Triple Negative and die within 5 years. I can't seem to stop my mind from going there. What makes it worse is that I have an oval mass so of course, I looked that up and that is more often TNBC. When I received my biopsy results yesterday I got them via email with a text notification before my doctor even had them. I was on the phone at work and looked up at my email - there it was. So, today I have turned off my notifications to the Lab and told my Doctor not to call me until Monday even if she got results on Friday. I would rather check the portal on my own time than have these results blasted at me when I am sitting at my computer trying to work.

This is just so scary and reading studies and stats on the internet is the most depressing thing I have ever done. Scientists make this out to be almost a death sentence.

Anyway, I do have an appointment with a breast surgeon and an oncologist on Tuesday. We are supposed to fly to the UK on the 3rd for a two week trip which I hope we can still do. My wonderful PCP called these doctors and asked that they get me in since I have this diagnosis and am supposed to leave on a trip. I am so grateful for that.

This is just so hard. I couldn't sleep at all last night so I am thinking I may have a small glass of wine tonight so I can chill. Otherwise I will toss and turn all night.

If anyone has any additional thoughts to add, that would be great. I don't know how long this wait will be for the report on the hormone receptors, but this really is horrible. I started another topic yesterday about just being diagnosed to which I received very nice responses.

I guess I need even more reassurance today than last night.

Thanks to you all.

Nikko1963 Dx 11/23/2021, IDC, Right, 1cm, Grade 2, ER-/PR-, HER2+ (IHC)
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Nov 24, 2021 01:58PM Beaverntx wrote:

Nikko, first it will be helpful if you choose one thread for the time being so those of us who are responding can avoid being too repetitive. After you have more information you may want to join existing threads that are diagnosis or treatment specific.

You are currently in the time of greatest uncertainty. My advice is to avoid Dr. Google, try to put this aside and wait until Monday as you have asked your doctors to do, do some things you enjoy over the next few days until you have more information on which to base a plan, and enjoy that glass of wine!

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 24, 2021 02:20PM moth wrote:

The vast majority of breast cancers are not triple negative. & Remember that early stage breast cancers are not fatal and the vast majority of early stage triple negative breast cancers do not become metastatic. So odds are on your side!

Try to not borrow trouble from tomorrow. You'll need to be patient and stay in the moment during this whole process. Consider lining up a counselor now because you deserve to not suffer so much anxiety and fear

Hang in there.

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: Never Tell Me the Odds

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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Nov 24, 2021 02:21PM MountainMia wrote:

Triple negative sucks and is scary, but the vast majority of us don't die from it. Also, I was diagnosed with tnbc, met with my surgeon and MO, and then went out of town for 3 weeks. It is very rare to have an emergency need for treatment. Please take a deep breath and focus on what you are doing RIGHT NOW. And then the next thing. and then the next thing. Enjoy your day tomorrow. Focus on who you are with, even if you are by yourself. Focus on enjoying your meal, whatever it is.

You can't change the outcome by worrying about it. Decide not to worry right now. I KNOW you can do it.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Nov 24, 2021 02:40PM Salamandra wrote:

I think the anxiety is part of the territory of early diagnosis. Yours has directed itself towards one specific possible outcome (triple negative) but it could have been anywhere. If you knew your hormone receptors were not triple negative, your anxiety would probably redirect itself towards metastasis or recurrence. It's just an anxious time.

I didn't start feeling better until I had my first appointment with a doctor. Do what gets you through it, whether it's yoga, video games, cake, ativan, etc. The triple negative thing is a total red herring. Plenty of people with triple negative live long lives, plenty of people without triple negative die too young, plenty of breast cancer survivors die prematurely of all the other ridiculous things life has to offer. It's just a thing that your anxious brain has latched onto. You didn't latch onto it through purposeful rational thought, and I don't think you'll be able to unlatch from it by purposeful rational reassurances from us here. The best thing is to go sideways by addressing/coping with the anxiety in general, the best you can, until you get to the doctor.

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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Nov 24, 2021 03:23PM Nikko1963 wrote:

Thanks to all of you who have responded.

Overall, I am a really grounded person. A worrier, but grounded. I have a job where I solve other people's life changing problems day in and day out. So, these feelings are pretty new to me. I guess I have been fortunate in life that I never have had to deal with something like this (other than my son having a really bad concussion).

Your comments and insights really do help. Dr. Google is evil and I'm doing better staying away from him/her. I'm going to try and stay away from checking for lab results on Friday as well.

Thanksgiving is here and there is lots and lots to be grateful for. I have two amazing adult sons, a husband who couldn't be more supportive, good friends and my beautiful dog, Nikko. Plus, that upcoming trip to the UK that I'm really looking forward to. I want to enjoy every minute of it no matter what my diagnosis is (pretty words, but hard to live up to).

I'm not a heavy drinker, but i have to say, I may imbibe in a few glasses of wine this weekend. A new haircut may also be in order!

Thanks again for all of your support. I think this site may just be a life saver for me as I embark on this new journey.

Nikko1963 Dx 11/23/2021, IDC, Right, 1cm, Grade 2, ER-/PR-, HER2+ (IHC)
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Nov 25, 2021 08:02AM SuQu31 wrote:

This is the worst part. You know some things, but not everything. You will not change anything by worrying over it, but easier said than done, right? You will feel so much better when you have a plan in place. Everyone says that, because it is so true. Today, count your blessings, enjoy life, drink the wine.

Also, I am generally a rational person who regularly has to deal with issues that are serious in a dispassionate way. Well, that all went out the window with the first phone call about “suspicious" findings, and my brain had to balance the rational with my incredibly emotional, irrational fear. It surprised me too, and any time there is a worry (because my diagnosis doesn't tell my whole story), I go back to that place. (I got two of my calls while driving in my work parking deck looking for a space, so I had a Pavlovian reaction to that place for a while!)

This is a good place to share your feelings and worries. We have been there. Keep us posted and I hope you are able to take your trip as planned.

Re-excision for close anterior margin 10 days after BMX. Dx 10/31/2018, DCIS, Left, Stage 0, Grade 3, ER-/PR- Surgery 12/9/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Dx 12/10/2018, DCIS, Left, 2cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 12/19/2018 Surgery 9/13/2019 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Nov 25, 2021 09:17AM gamzu710 wrote:

You are definitely in the worst phase right now, with incomplete information. Once you have more information, your mind can focus on just a few things instead of trying to contemplate and brace yourself for everything at once. Hang in there. It does get better and you will not feel like this forever.

I also self-diagnosed with triple-negative based on Google Images and trying to use my memory of the ultrasound biopsy images to compare to various pictures. My pathology ended up coming back triple-positive instead, so I literally could not have been more wrong if I tried. What I learned was that playing internet radiologist is very dangerous and there's a reason my tests were done by people with 8+ years of training!

Of course, it could be triple-negative. But there are many women on this board and others with that diagnosis doing very well. Try not to read too many research papers about statistics, etc. Breast cancer treatment gains more options and knowledge every single year and the literature you read now is often analyzing patients who started treatment 10+ years ago when the options were different/less. So these statistics are no longer valid for people diagnosed today. I started getting very upset about some information about lymph nodes I read in a paper while I was waiting for that biopsy result to come back; I then happened to look more closely at one of the data tables and realized one of the patient groups contained people born in the 1890s. It was a reproduction of a really old paper and was totally irrelevant. This is an extreme example but just be very cautious in your Googling! Statistics are useful only at population level and don't tell you much of anything about you individually, particularly old statistics.

You are in the right place for support and you got this, even if it doesn't seem like this right now. I well remember those horrible first days back in August and I'm in a very different place 3 months later. Focus on self-care for now and take things one step at a time. Best of luck to you!

Surgery 7/29/2021 Lumpectomy: Right; Lymph node removal: Sentinel Dx 8/3/2021, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ Chemotherapy 10/21/2021 Taxol (paclitaxel) Targeted Therapy 10/21/2021 Herceptin (trastuzumab)
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Nov 25, 2021 03:36PM Nikko1963 wrote:

Oh, my goodness. I cannot tell you how much better all of your responses have made me feel. I need to hear all of it. I was starting to feel just a bit over the top because I could not stop thinking about this or trolling the stupid internet looking at images, reading studies, etc. My brain and emotions were on total overdrive. It's so helpful to know what others have experienced.

Today has been a good day. I worked out with my husband (which made me feel stronger) stayed off the internet, refused to look at email and spent some quality time with friends and family. Tomorrow I cook the Thanksgiving Dinner because my son had to work today. Lots of folks coming to my house. It will be good.

I know there are some crappy days to come, but then the next day will be better. I am looking forward to meeting with my new doctors on Tuesday so I can start getting a better picture of how this process will work and start that planning process. And, unless the doctor specifically says it is dangerous for me to travel to the UK on Friday, we are going on that trip.

Thanks again and will post when receive new information.

Nikko1963 Dx 11/23/2021, IDC, Right, 1cm, Grade 2, ER-/PR-, HER2+ (IHC)
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Nov 25, 2021 11:42PM sillyoldrabbit wrote:

Hi Nikko. Another TNBC patient here to chime in a bit. I'm getting close to the 4th anniversary of my diagnosis, but remember well the extreme anxiety at the beginning of the process. My blood pressure shot up to something like 180 over something or other, and my PCP prescribed Diazepam(Valium) on the spot to help me get through that period. It helped enormously, but because it's so addictive, I was very judicious with it and only took some when there was no other way to control the anxiety spiral. There were 20 pills in that first script, and I still have some left! Just knowing it was there if I needed it helped me calm down. It also helped me to find a Safe Place in my head where I could retreat. It just sort of happened unintentionally. All I seemed to want to do during the most anxious times was work on jigsaw puzzles and play opera. This was not my normal behavior previously! Then I realized that I was recreating a safe space recalled from my childhood. My mom was a music lover and aspiring opera singer, and I loved working jigsaw puzzles while the music played in the background when I was a kid. Whatever works!! I also found these boards to be a lifesaver through all my treatments. Hoping the best for you!!

Dx 2/28/2018, IDC, Left, 4cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- Chemotherapy 3/18/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 10/1/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 11/2/2018 Breast
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Nov 26, 2021 08:55AM Serendipity09 wrote:

Nikko - the internet is not your friend regarding bc right now! Please continue to focus and enjoy yourself this weekend. As everyone else has said, and I think I said it on another post, you will feel better once you have a plan in place and knowing what you are actually dealing with. This is the absolute worst part, IMO! Girl, drink that wine, enjoy your time with your family, keep your head clear going into Monday. You've got this!!

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 3/31/2020 AC + T (Taxol) Surgery 9/16/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Chemotherapy Xeloda (capecitabine) Chemotherapy Carboplatin (Paraplatin) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 29, 2021 02:55PM Nikko1963 wrote:

It's been about 6 days since I received that initial diagnosis. So many emotions over just 6 days. One day feeling terrified, the next I think I can handle this. I spent lots of time worrying about Triple Negative which was a waste of energy. But, after reading all of your posts, I climbed out of that initial rabbit hole (sort of) and I allowed myself the entire Thanksgiving weekend to try and breathe. I didn't look at my report with the receptor information and just tried to have a great time with my family and friends. On that I was fairly successful. We had a great weekend!

On Sunday I just decided I had to know - ER-/PR-/HER2+. So, kind of different. I was relieved I had given myself time over the weekend just to process the first diagnosis before looking at this report. It felt better. The report also stated the tumor had apocrine features.

Tomorrow are my first appointments. I have been reading other posts regarding the treatment protocol so I kind of know what to expect. The biopsy showed the mass to be 11x10x6mm and I am Grade 2. I have so many questions. In the meantime, still getting ready for our trip to the UK. We are from the Southwest so flying to the cold temps will be different. Still looking forward to a great trip with wonderful friends before the real work of this journey starts.

Thanks to all the folks on this board for your support. It really does help.

Nikko1963 Dx 11/23/2021, IDC, Right, 1cm, Grade 2, ER-/PR-, HER2+ (IHC)
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Nov 29, 2021 03:13PM - edited Nov 29, 2021 03:14PM by SondraF

Nikko, just to flag you may want to check the latest requirements for UK entry and quarantine due to the fast moving omicron variant situation.

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole) Surgery Prophylactic ovary removal
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Nov 29, 2021 03:21PM Nikko1963 wrote:

Thank you for posting.

We already had to change our Covid test to a PCR. The slots filled up really fast but we got one a couple of hours after landing. We have to quarantine for a couple of days upon arrival. It is all very fluid so my husband is on the website multiple times per day. We understand the requirements could change again. UGH.

We will have to take a test just before coming back to the US.

Nikko1963 Dx 11/23/2021, IDC, Right, 1cm, Grade 2, ER-/PR-, HER2+ (IHC)

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