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Topic: Dealing with Anxiety post-Diagnosis, pre-Treatment

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Jan 13, 2020 01:42PM

Lefty_Lucy wrote:

Hi all, I was diagnosed with DCIS (extensive throughout breast, grade 3, comedo necrosis) at the end of December. It's been a rollercoaster couple of weeks. I was initially devastated, then very relieved and elated when my initial research helped me understand how treatable this is.

However, I've been really anxious again since my initial breast surgeon appointment. He will only consider mastectomy, no nipple or skin sparing options, and prefers BMX. Will not consider immediate reconstruction. I get the reasons this might be the best option, but I hated the practice and the surgeon was also condescending and vague.

Now I'm trying to get a second opinion, and was just about to get an appointment with a doctor I'd really like to see, 2 hours away. But she can't see me until 1/31.

Thoughts keep swirling in my mind -- I'm so much luckier than so many, even though mastectomy is hard to consider I will most likely have a good outcome. But I'm also stressed out of my mind. I have two little kids and my husband works two full-time jobs. I'm still nursing my youngest. We can't afford him to take time off, we can't afford cancer. Rates of survivorship are great for DCIS, but I also have all the markers for the people who do get recurrences. I know that we'll just have to deal with surgery and debt and everything as it comes, but the stress is sometimes overwhelming. Everything is going slow and fast all at once, and sometimes I can't make myself get up and do the things I need to do.

All that to say... where should I go for help? I usually do yoga as my preferred exercise/self-care, but lately I can't enjoy it as all the most panicky thoughts get louder when everything else goes quiet. I'm considering asking someone for anti-anxiety meds. Who should I talk to -- PCP? Or schedule with a psychiatrist (sounds daunting and exhausting).

Other anxiety-relieving ideas welcomed. :D

Dx 12/30/2019, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+ Surgery 1/29/2020 Lymph node removal: Sentinel; Mastectomy: Left
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Jan 14, 2020 12:25AM MinusTwo wrote:

Lefty - so sorry you've had to join this club. But extremely glad you aren't letting the first doc bully you. I had a BMX for DCIS much like yours with tissue expanders placed during that same surgery - under the muscle. The expanders were gradually inflated then I had to wait 6 weeks for everything to stabilize before I had exchange surgery.

First - you should have a breast surgeon to deal with the mastectomy and a plastic surgeon to deal with reconstruction. Second - no one will know for sure about the nipples until they are inside and see how close the margins are. But you shouldn't be told 'impossible' with no basis. Third - 1/31 isn't that far away. If you can get a doc you like, it's probably worth waiting. You could call every week and see if there have been any cancellations.

There are groups that might help with the expense. I don't know any, but I expect you could "search" this site and also the Susan B Komen site. And by all means ask your doc. Hopefully someone will post who knows mor about this.

As far as anti-anxiety meds, if you have a regular PCP or a GYN, either one should understand and prescribe something for you. If Yoga isn't working, how about fast & long walks. Binge watch some TV that you've wanted to see. Some people deep clean their houses.

You didn't say how old your youngest is, but if you know you're going to be having some treatment - whether it's BMX or not - it might be a good idea to get the weaning process done. Although this is only a guess, I'd think the imaging would be different without active milk production.

We'll be with you.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 15, 2020 09:55PM Lefty_Lucy wrote:

Thank you for reading my whole rambling post, MinusTwo! For some reason I get into this mindset that I need to rationalize my anxiety since this is "just" DCIS and overall I am lucky. I got an appointment set up to see my PCP tomorrow about anti-anxiety meds. Thanks for the great ideas on how to tackle the other parts. Onward!

Dx 12/30/2019, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+ Surgery 1/29/2020 Lymph node removal: Sentinel; Mastectomy: Left
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Jan 15, 2020 10:48PM MinusTwo wrote:

There is no such thing as "just anxiety". Hope you have a good session with your PCP. Please so check back and let us know how it goes.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 16, 2020 07:49AM claireinaz wrote:

Hi there,

I had a low dose of Xanax on hand when I needed it and took half of one tab...it just took the edge off. I am a regular yoga student, and my advice is to keep doing yoga no matter the thoughts. I needed my yoga community and practiced yoga during all my dx and tx, and even if I couldn't do half the asanas well or at all, or even if my thoughts kept racing, you will still get the benefit of it. My surgeon-the one who did the lumpectomy and shared my initial pathology--wrote me the rx for Xanax. But a good GP, after knowing what you are going through, should not have a problem with writing you a 30 day rx.


Good luck; we are here for you.

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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Jan 20, 2020 05:38PM Lefty_Lucy wrote:

So, my PCP appointment was a disaster. I had childcare set up for my 4yo, was going to take my 1yo with me. When I got to the office I was first shocked to see a new big sign that said "NO CHILDREN UNDER AGE 18 ALLOWED INSIDE THIS OFFICE." So, I wasn't sure what I was going to do, but then while I was waiting for a chance to check in and beg the receptionist for a break, I got a notice that my 4yo needed to be picked up from school. So I left and apparently need to get a new PCP, since I can't always get a sitter or other childcare.

The day before that I filled out one of those emotional support questionnaires at my surgeon's office when I reported exhaustion and anxiety to my nurse. No one called me, so later in the week I called the nurse and asked if she could ask the doctor to help me with a prescription. She told me flatly, no, to contact my PCP. When I told her I no longer have a PCP, she told me that wasn't their problem.

So no anxiety progress for me, yet. Another full panic attack today. Going to see if I can get in with a new PCP soon, I guess.

Ugh, weaning hormones + PMS + cancer stress = horrible combo.

Dx 12/30/2019, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+ Surgery 1/29/2020 Lymph node removal: Sentinel; Mastectomy: Left
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Jan 20, 2020 05:40PM Lefty_Lucy wrote:

Oh, the one bright spot is that yoga this week was better. And my teacher follows me on Instagram (where I've been open about what's happening) and slipped a really nice note under my mat during shavasana.

Some days are tough, but I'm going to keep going through.

Dx 12/30/2019, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+ Surgery 1/29/2020 Lymph node removal: Sentinel; Mastectomy: Left
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Jan 20, 2020 05:59PM - edited Jan 20, 2020 05:59PM by LiveLoveLaugh2020

I had overwhelming anxiety and sometimes even still do. I was one of those who didn't want to take meds but finally realized I had way more than enough on my plate already and it wasn't worth the extra suffering. My BS set me up with someone. I still have anxiety but the meds are helping a little. So hope you find a PCP soon or once your established with the right surgeon they will understand and give you a RX or at least set you up with someone who can help. It's really frustrating what healthcare has become, you'd think people would be more understanding especially those in the oncology field!!

DCIS Dx @ 34 - Bil NSM 09/2019 - Bil implant exchange with FG 01/2020.
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Jan 21, 2020 05:32AM gb2115 wrote:

What kind of primary care practice doesn't allow children in the building??!??? That completely alienates mothers with young children. So for a nursing mom of an infant, you have to get a baby sitter and have your infant bottle fed, just so you can see your doctor?!

I'm sorry, that's a terrible office policy. See if you can find a family practice kind of PCP...one that actually cares about patient's families.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Feb 19, 2020 07:48PM HelloItsMe789 wrote:

I'm a little late to the party here. I hope you have found some relief, answers and a new PCP! I have an MRI Friday and am currently a wreck for fear they find more. Deep breaths

Heart

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May 11, 2020 04:08PM Lefty_Lucy wrote:

Thanks for all the replies! I took a break from the website (and most of the internet) for a while after my mastectomy. Gearing up for mastectomy and reconstruction and I'm back... and the anxiety is still a roller coaster. Thankfully I did find a much better PCP. I've tried 3 prescriptions, but two didn't work and the one that did had side effects my provider wasn't OK with. What a wild few months it has been.

Dx 12/30/2019, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+ Surgery 1/29/2020 Lymph node removal: Sentinel; Mastectomy: Left
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May 11, 2020 09:54PM OnTarget wrote:

Lefty, I'm so sorry you had such bad treatment. My friend got anxiety meds from her surgeon, in fact, he suggested them. I've never taken anything like that, but retrospectively I could have used them during the wait for surgery!

I am all in favor of finding doctors you like. We sure see them often enough!

Helloitsme, good luck with your MRI!!



Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/5/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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