Topic: Anxiety

Forum: Not Diagnosed But Worried — For those who are experiencing symptoms or received concerning test results, but haven't been diagnosed with breast cancer.

Posted on: May 25, 2017 04:31PM

Posted on: May 25, 2017 04:31PM

MTwoman wrote:

Hi, I've been NED for 14 years and have been a therapist for 17 years, so I have a lot of varied experience dealing with anxiety. Anxiety is just awful and can not only be debilitating, but can keep us from being able to take in and process information just when we need to be at our best. Too little stress can leave us bored, but too much stress/anxiety can leave us with panic, unusual amounts of anger and/or the inability to "perform" at our best. In the "not diagnosed but worried" category, anxiety can mean that we aren't able to hear our medical providers when they give us good news, or we aren't able to rationally discern what information is good and credible scientific evidence and what information is unscientific and only inflames our anxiety. It may impair our ability to listen, remember, read and comprehend our personal risks, our treatment options and our ability to calm ourselves, even if we have been found to have no evidence of disease.

Image result for anxiety curve

So how do you know if you are too anxious? Look at the stress curve above. Do you feel fatigued or exhausted? Are you sleeping well? Can you turn your mind to something else when you need to focus on another task? Or is your anxiety all you can think about. Are you eating properly? Or have you lost your appetite. Are you able to engage in activities that reduce your feeling of anxiety/stress? If you are able to concentrate on something else for periods of time, and utilize good coping skills to reduce your feelings of stress, then you'd fall in the optimal performance stage. If your normal patterns of sleep, energy and appetite have been disrupted, then you would fall in the distress stage.

I am going to suggest some strategies for each category, and am hoping that others will chime in with what works for them. What I'd like to see is a thread where anyone who is new to the experience of breast cancer or other breast health issues, has a place to refer to for concrete suggestions for managing their anxiety. There is no judgment here, as we've all experienced anxiety (to some extent) in our own journeys.

Stress occurs when perceived pressure on a person is greater than their ability to sustain resilience. The following skills can be used to improve and maintain your resilience:

  1. Practice distraction: deep clean something; do a home project that you've been wanting to do but haven't gotten around to; binge watch netflix; if you like to cook or bake, make a complicated recipe that takes your full concentration.
  2. Exercise: studies have shown that at little as 20 minutes of walking can bring down your stress response and walking in nature has a more robust response
  3. Regular relaxation: listen to a relaxation cd or use an app, try guided imagery, practice counting your breathe, practice yoga, try mindfulness or meditation, take a hot shower or bath, get a massage
  4. Use good self-care: make sure you are getting good nutrition and good sleep

For those of you who find that the above strategies aren't enough to reduce you anxiety to a tolerable level or for those of you who have pre-existing anxiety issues.

  1. Talk to your primary care provider (or psychiatrist if you have one) about medication options, both long term and short term; for both anxiety and sleep
  2. Think about getting into therapy and learn cognitive behavioral techniques to address your anxiety
  3. Find a group that lets you connect to others who have experienced similar levels of anxiety and who may be able to share ideas about what has been effective for them.

For those who are here who have been diagnosed, there was a study recently released that found a statistically significant improvement in the recurrence anxiety of breast cancer survivors. See a summary here:

I may review and revise this post at will without defining why, unless saying why is integral to the work. I would like to be able to add links and additional information as I find it.

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/20/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Mar 26, 2018 03:09PM gb2115 wrote:

I got a call that it was normal, I am so relieved! Off the hook until my mammogram in the fall! Whew!

First Dx IDC in 10/16 at age 38, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Lumpectomy + radiation + tamoxifen. Second Dx IDC recurrence in original location 5/21. 1.3 cm ER/PR+, Her2 -. Grade 2. 2/2 nodes. UMX + AC/T + Zoladex/Exemestane + Zometa.
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Mar 26, 2018 06:46PM Egads007 wrote:

So happy for you! I love good news! Hope you’re celebrating

"I base all my fashion choices on what doesn't itch" (Gilda Radner) Chemotherapy 3/20/2013 Doxil (liposomal doxorubicin), Taxol (paclitaxel) Surgery 8/23/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 11/1/2013 Whole breast: Breast, Lymph nodes Dx IDC, 4cm, Stage IIB, Grade 3, 0/2 nodes, ER+/PR-, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 10, 2018 04:13PM - edited Oct 10, 2018 04:14PM by SmallTownGal

One of the things that's helping me right now is to remind myself that I am in control. The doctors can provide me with tests results, diagnosis, treatment options, and expected outcomes. BUT, in the end, I am the one who will decide what treatments I receive, what tests and procedures I consent to, and where I get my medical care.

For example, it may be that my doctors eventually advise me to have chemotherapy. In that case, I most probably would decide to have the chemo. But, it would be my choice to do that--after all, no one is going to physically force me into an oncology center for chemo! Smile

Also, a friend of mine who is a breast cancer survivor decided to travel to another state for her treatment. She felt the cancer center there was one of the best in the world, so getting treatment there gave her extra confidence. Choosing where she got her care made her feel more in control and I think that helps a lot when you're facing such a scary disease.

Surely it is God who saves me. I will trust in Him and not be afraid.
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Oct 11, 2018 09:25AM SmallTownGal wrote:

I received my ultrasound report last night after 10 pm through the hospital system's online chart. It says benign recommend 1 year screening mammography. Yay!! I am living proof that good results do happen.

One thing that helped me was to calculate my risk of having advanced cancer, because early stage disease is so very curable. According to the website, Moose & Doc Breast Cancer, there was a 17% risk of my ultrasound being cancer. Even if I had fallen into that 17% with cancer, there was a 65% chance it would be at stage 0 or 1, which have a survival rate close to 100%. So, after a little math, I figured there was a 94% chance I either had no cancer or a very early stage cancer. That reassuring stat reminded me that catching it early is why we go through the annual mammograms and the dreaded call-backs and ultrasounds, etc. It really is worth the anxiety if we can catch cancer while it is almost 100% curable.

Surely it is God who saves me. I will trust in Him and not be afraid.
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Oct 15, 2018 07:43PM SafetyGuy wrote:

SmallTownGA. Praise the Lord for good news! I love your line "Surely it is God who saves me. I will trust in Him and not be afraid."

I get my biopsy report tomorrow. Regardless of the outcome, it is only my body not my soul.

Dx 10/17/2018, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2-,
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Oct 17, 2018 08:53AM SmallTownGal wrote:

SafetyGuy, I hope your report brought good news. Regardless of the words on a biopsy report, remember that you are still you. Do not despair but trust in God.

The line "Surely it is God who saves me. I will trust in Him and not be afraid." is from the refrain of The First Song of Isiah, Canticle 9. We sing the whole song in church most Sundays of the year. I find the four lines of the refrain give me great comfort in times of trouble. I frequently use the whole refrain for meditation as well. Here is the entire refrain: "Surely it is God who saves me. I will trust in Him and not be afraid. He is my stronghold and my sure defense, and He will be my savior."

Surely it is God who saves me. I will trust in Him and not be afraid.
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Dec 7, 2018 12:45AM - edited Dec 7, 2018 12:48AM by chisandy

You're on to something when you mention "uncertain outcomes" vs. a sense of control. Uncertainty drives me batty, in all aspects of life: will I be able to park when I get there; will the roads or sidewalks be icy; will I have drawn enough of a crowd for the venue to book me again; will I get a tax refund or have to pay extra this year, and if so how much; will I have enough time between scenes in the show to change costumes and get miked; will the pipes freeze; will my car start; do I have enough gas to get to the next filling station on this country road; yada yada yada...

Proof of that is how I felt when I got that first dicey mammo result "BIRADS 0;" then when the radiologist suggested a biopsy; then in the 10 days I was on the road and the thought "it might be cancer; what if it's cancer; am I going to die; OMG, it's BIRADS 4B, I'm sure it's cancer; what if it's triple-neg or Stage IV?" kept running in my head in an endless loop, like a drunken yet manic rabbit caroming off the walls of the rabbit hole, wrecking any enjoyment I had in the off-hours from my continuing legal ed course and coffeehouse gigs. Oh, sure, that fateful phone call the day after my biopsy with the words "invasive ductal carcinoma, grade 2, hormone-positive" was initially a punch to the solar plexus--but after I hung up, I felt strangely relieved: I knew what I was facing and I was in control of what I would do next. Fear gave way to determination to learn all I could and be confident in the choices to be made. Of course, there was still uncertainty about margins, lymph nodes and whether I'd need chemo; but when the path report and Oncotype score came back, I could see the "paving stones of the road ahead" fall into place and my apprehension fell away like the air in a leaking balloon.

As to valerian root, I'm still not sure if it's okay. MtWoman, you're triple-neg, so it's safe for you and many other women on this thread. I'm Luminal A, on letrozole. I have a scrip for Xanax (1/4-1/2mg for sleep), but I no longer wish to take it. Wine, even in the tiny amount (1-2 oz) that comes out of my Coravin, seems to wake me up during the night. CBD oil helps somewhat, especially when supplemented by 1/8 of a 25mg. indica THC gummy (finally got my MMJ card); but it would be really nice to be able go back to the valerian that always helped me pre-bc when I would awaken in the night & not fall back asleep. (The alternative is Lyrica, which I got after weird neuropathy after my first Zometa infusion--but it makes me oversleep and then be loopy half the day; I take one maybe every 2-3 weeks, and have no idea how people function taking it 2-3x a day as the label directs). Both valerian and Lyrica drop me like a plugged buffalo, but the valerian's nearly instantaneous whereas Lyrica does nothing for 2 hrs and then hits me like a ton of bricks. MSK's site doesn't say valerian's contradicted for ER+ patients, whether on an AI or tamoxifen; but I hear anecdotal reports that people's MOs advise against it, though with no reliable specific scholarly citations either way.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy; Lumpectomy (Right) Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Jan 13, 2019 08:01PM Larlaw wrote:

I've struggled with anxiety pretty much my whole life but the last few years have been awful. Ever since I found out I'm infertile I feel like doctor's will have only bad news and not good. I fell apart last year after my first screening mammogram when they found my scar tissue (after a diagnostic mammogram, ultrasound and mri). 2 different radiologists looked at the mri and both said it was scar tissue. My family dr felt it afterwards as well and said it didn't feel concerning. I didn't get called back after my 6 month check up but have gotten called back for another ultrasound after my year followup. My family dr said its for the same spot so I shouldn't be concerned as I had the all clear last year but I keep going over worst case scenarios - that my family dr isn't telling me the whole truth or is flat out lying to me because she knows how I panic, that it's gotten bigger, that they were wrong last year, etc. It goes on. I know from the counselling I've been to that this is totally my anxiety at play. That most likely they are just being diligent at keeping an eye on this lump of dead tissue in my breast.

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Jan 14, 2019 12:36AM meow13 wrote:

You might ask for a biopsy to be sure if it concerns you. That should be a reasonable request.

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Jan 14, 2019 09:09AM santabarbarian wrote:

Ch Sandy: Don't know if it has been mentioned yet, but 20 mg of Melatonin puts me out like a charm at night and it also has anti-cancer benefits. My integrative cancer doc told me to do it. You have to start at lower dose and work up to 20 mg.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy; Lumpectomy (Left) Radiation Therapy 2/11/2019 Whole breast: Breast, Lymph nodes

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