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The terror of waiting

ohkate Member Posts: 4
edited March 2022 in Not Diagnosed But Worried

Hi folks, I'm Kate! I am hoping for some collegial support. I have generalized anxiety disorder which had been improving, but I am now spiralling due to health anxiety. I am about to write a books worth of rambling..

I naturally have some slight nipple inversion, and have my whole life. A year ago, after a 40 lb weight loss, one side began inverting more (but still responding normally). No noticable bumps or other changes.

In February 2021, despite a normal physical breast exam, I sought a second opinion via telemedicine and was referred for an ultrasound (as I am under 35 with large, fibrous breasts). The ultrasound result was considered "normal" - with 2 cysts in the breast of concern, and 1 in the other. One cyst had some debris but was not considered complex, only complicated (if I'm getting my words right). Due to the debris, it was recommended that I have a follow up scan for comparison at 12 months. Since then, I've been unable to shake the feeling of "if it's normal, why do you need to monitor it? It's like I'm waiting for them to find cancer".

I just got back from the follow up ultrasound (March 2022) and I am panicking. The sonographer took so many pictures of the breast I am worried about (with the 2 cysts - one including debris), I walked away feeling sheer terror. I feel certain there are bad changes since last year.

On the same side of my body I have been having muscular pain issues with my scapula and rotator cuff on and off for months, which I am addressing with a physiotherapist. He believes I have stress-related tightness and too much repetitive motion as I'm an avid exerciser. Of course, I am now convinced it's a sign of cancer spread. I am SPIRALLING.

I was previously a caregiver - with my father having passed away just a few days before my 2021 ultrasound. He had liver cancer that was terminal at diagnosis, after having trouble pinning down confusing symptoms and diagnoses for many, many years (15+). He lived about 3 years post diagnosis, but really had no interest in living.

As you can imagine, these things are all tangled in my mind and I just needed to get them out somewhere safe and supportive.

UPDATE: I want to update for those like me, who may stumble across this post, as so many folks don't return to close the loop.

I received my results today. My monitoring ultrasound was considered stable in most regards, with some cysts decreasing in size, and another growing very slightly. I still have a complicated cyst, but overall I have been downgraded to BI-RADS 2 (it was a 3 last year).

I hope this gives some comfort to those with health anxiety and concerning symptoms (I had new nipple inversion, and rib/chest/scapular pain) that there are diverse outcomes.


  • ceanna
    ceanna Member Posts: 3,120

    ohkate, sorry you are worried. The BCO threads would usually be a great place for support, but right now it's in the middle of major system failures so replies might be slow or non-existent to your message. I hope my reply goes through without a "site down" error.

    It's hard to wait and not to worry. You seem to be in contact with your medical team, so you may want to talk with them about your anxiety. Taking lots of views in an ultrasound seems normal and should not be cause of concern. Having breast cysts occurs with many of us and is not cancerous. They can grow, and that's why they monitor, but they do not spread. Hang in there until you get the results.

  • sarahmaude
    sarahmaude Member Posts: 336

    I’m writing to you with my recent experience. I’m not a medical professional, but know a lot about the anxiety of waiting, and can tell you about my diagnosis.

    First, if they are using the word cyst instead of tumor, that is a good thing. After my mammogram and ultrasound, they told me what I have is not a cyst. Mine did come back as the most common type of breast cancer. When I was premenopausal, I had lots of fibrous cysts. They were never anything even related to cancer.

    I’ll also say that my largish tumor causes zero pain anywhere. I cannot imagine that scapula and rotator cuff pain are a sign of cancer.

    If they have good images and are saying come back in a year, they really don’t think you have cancer. Having comparison images is a good thing.

    I can’t see that you’ve had a mammogram. If you are 40, you should get a baseline one. If you have the option of a 3D mammogram, I would choose it even if you have to pay a bit more out of pocket. From my reading and experience they are better with assessing dense/fibrous breasts.

    I’ll also say that so much of any medical situation is the waiting game. Medicine is only fast on television.

    I can also empathize with you on having been a caregiver. I lost my mom a year ago to Alzheimer’s disease. I’m not recovered from the two years of full time care for her and her death.

    I’m thinking about you, and I will say from reading your situation expect that you will be fine. Do what you can. Advocate for yourself. Ask questions. But also know that detection and treatment options for breast health is really good today. Cyber hugs to you.

  • ohkate
    ohkate Member Posts: 4

    Thank you for your reassurance! To clarify - I just had my 12 month follow up (with original complicated cyst identified in February 2021), and I'm now awaiting the results to see if it is stable or concerning. Very worried that it may have changed or grown during that time, based on my glimpses of the ultrasound snaps and how focused the sonographer seemed. In my area you don't deal directly with the radiologist, you just receive the results through your GP.

    I'm 33 and my GP felt ultrasound was the best match for now, hoping I can return to normal monitoring through mammogram by the time I'm 40.

  • ohkate
    ohkate Member Posts: 4

    Just wanted to add that I do intend on tackling the bigger picture of my anxiety separately, just trying to survive until my results in the meantime.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    What you see in the ultrasound and what the sonographer is doing have absolutely nothing to do with whether you might have cancer or not. It's normal to feel some worry about pending scans and follow-ups but you have nothing to worry about yet. Your only problem right now is your anxiety. You are making yourself miserable over nothing!

    Everyone you are talking to here has actually had cancer. We can help you with cancer-related questions and concerns but we can't help with your anxiety.
  • rrobin0200
    rrobin0200 Member Posts: 80

    ohkate, I am so sorry that you are having such anxiety about this. We have all known that fear all too well. Take a deep breath. You don’t know anything yet. Don’t worry until you have something to worry about. (I wish I could heed my own advice!!) They mentioned cysts, nothing else. That’s a good sign. Keep yourself busy. And if you need to talk, we can answer to the best of our knowledge.. which in turn can help diminish some of your anxiety. So yes, we could possibly help you with calming your fears, eliminating some anxiety. Take care. ❤️

  • ohkate
    ohkate Member Posts: 4

    Thank you! It's so hard to shake the presumption of bad news after reading into every "click" and rescan of the same area over and over at the ultrasound.