The Red Scaly Nipple Breast Cancer Anxiety Fountain

January 18, 2020 2:26 AM

Help. I have recurring nipple eczema and I have had lots of medical intervention but I can't stop obsessing. This is made much worse by two family members recently detecting early breast cancer and skin cancer through extreme vigilance, navigating a healthcare system in a different country, and contemplating a move back. I need coping strategies!

Family history for breast cancer is very high: mother, sister, maternal grandmother, maternal aunt. None of us (so far as we know, I'm still awaiting results) are BRCA2. I am awaiting my own genetic test results. I'm from the US, but moved to a country with nationalized healthcare last year. After waiting for a year to be seen by a genetic specialist to get authorized for screenings, I finally just paid out of pocket for a genetic screening and breast exam.

I did this because in November, I suddenly had an unbearably itchy left nipple. I chalked it up to dry skin in winter coupled with PMS, but on a plane I noticed that it was weeping. It was painful and itchy, but it went away. Then a week later it was back, worse, and i was worried it was paget's. My GP said probably eczema, let's see if it clears up with steroids.

At this point I was so anxious, having not had a scan in over 7 years, that I just went to a private clinic. They did a mammogram and ultrasound, and found nothing in my left breast ("whatever it is, it's in the skin" said the radiologist) but a tumor in my right breast. We did a core biopsy and after 7 miserable days of anxiety it was declared a benign fibroadenoma. Phew.

I talked this all through with my GP, my left nipple looked better, she was not concerned, and prescribed some tougher steroid cream and that was that.

It's been itchy and flaky on and off and in relation to my cycle, and a bit painful at times, possibly just normal hormonal boob pain. Today it is fine, but I've noticed the whole nipple is redder and darker than the right one. It's subtle, but my husband can see it.

I can't stop worrying that it's actually pagets, or actually IBC. The only two things left to do, I think, are to get a tissue biopsy of the nipple or a breast MRI. I'd have to pay out of pocket for these so I am inclined not to do them, because I am assuming paget's doesn't get better with steroids, and IBC would have been detected on the ultrasound.

The thing stopping me is that my mother just had squamous cell skin cancer that the doctors missed for a month, and my sister had stage 1 cancer that only was found on an mri. So I'm probably just being overly cautious and can't decide how to proceed.

I'm also in the process of transitioning at my job, and considering a move back to the states, which would create a gap in my care and there may be some time where I dont have health coverage and this is making me extra anxious.

Any strategies or advice? I am stuck between not wanting to over intervene vs. ignoring truly worrying symptoms.

posted by anonymous to Health & Fitness (5 answers total)

Have you sat down and looked at pictures of pagets and IBC, skin cancer and eczema and other similar conditions? If you were to compare them I think you might be able to tell the difference. One way to reassure yourself would be to train yourself in diagnosing eczema.

The other thing to do is that deep mental work that helps you come to terms with loss, fear and mortality, and with anxiety. It's not impossible that you are displacing some of your fear and grief for your family members onto your own body. The idea of losing your sister, or knowing she is suffering is a terrible one, and that emotional storm may be partially breaking over your own body. This is true even if your relatives have gone into remission or died some time ago, because we often shut down our anxieties and fears when we are helpless and they come out somewhere else, and there can be a long delay before the emotional storm breaks.

So you may find that dwelling on your recently diagnosed relatives and their situation, and working on not identifying with them helps you get some distance from your own diagnosed-as-benign condition. For example, say one of the recently diagnosed people is your sister. Sending her a gift to provide support while reiterating all the things that make you personally different from your sister can help you encapsulate your anxiety about her diagnosis better. There's a part of you thinking, "We have cancer," and if you can dial that back to "She has cancer," the anxiety could be more controllable. When I say reiterate all the things that make you personally different from your sister I don't just mean contrasting "I don't have a cancer diagnosis and she does," but also the little things like, "She's older and I am younger," and "She was the one who hated green beans at our family suppers while I loved them."

Perspective is helpful for hurting and worrying less. A factor worth considering is that we appear to be on the cusp of cancer becoming a chronic rather than a fatal disease, the way that a diagnosis of diabetes or HIV positive was once time to go settle your affairs and is now moving towards the same life expectancy as someone without either diagnosis. The death rate from cancer has dropped 26% since 1991 - and statistically without those medical advances it should have been going up as the boomers began to reach the ages when they are at significantly higher risk of cancer. Over the next decade that survival rate is on track to climb increasingly sharply. Cancer is very different in this decade than it was between 2000 and 2010, let alone the 1980's.
posted by Jane the Brown at 4:52 AM on January 18, 2020 [3 favorites]

I don’t know whether you have breast cancer, but I will tell you some things as a five-year breast cancer survivor myself:
1. If you’re worried, fight to get tests. Nobody is going to advocate for you but yourself.
2. My oncologist told me one time, regarding new mysterious symptoms I obsess over, “if it comes and goes, it’s not cancer.” So far, all my weird symptoms have gotten better and/or gone away. It sounds like is happening for you too.
3. I am still here. I know dozens of women who are breast cancer survivors. Even if you do have breast cancer, the treatment is improving every year. Today there are many drugs that didn’t exist even five years ago when I was in treatment.

In conclusion, you are very very likely to be okay. But I know very well how difficult it is to talk yourself into believing it, so you should pursue all the testing possible for peace of mind.
posted by something something at 5:38 AM on January 18, 2020 [5 favorites]

I have had exactly this for years. Short version: Neurodermatitis/lichen simplex chronicus, ironically enough it's triggered by stress and anxiety and scratching!

I had one itchy right nipple that matches your description exactly, and by the time I dragged my ass to a dermatologist, I'd been scratching for so long that the whole area had become darkened. The derm foisted me off onto my gyno, who referred me for a breast ultrasound. They confirmed that it wasn't Paget's or some other Big Scary Cancer, but as often is the case for "minor" quality-of-life issues were otherwise useless. Never mind that the scratching and flaking and discoloration was bad enough that the ultrasound tech at the breast center who sees all sorts of boob problems every day was like, dang... The dermatologist had been so unhelpful, and since it definitely wasn't cancer (I put a lot more faith in specialists and testing than I do in my general doctors), I just gave up and lived with the itching for years.

After several years of one consistently itchy right nipple, the left one started itching too. The left side started during an extremely stressful period at work (like, lost 5% of my body weight in three months stressful) and I remembered that the right side had started during grad school (another period that was very bad for my mental health). Eventually I came across lichen simplex chronicus (probably on Metafilter) and after a lot more stressing and way too much online research pieced together enough that I'm confident in my self-diagnosis.

It's gotten better over time, as I've gotten my ADHD/depression/anxiety more under control and my life stressors have overall decreased. I still get itching on both sides (I'm prone to dry itchy skin anyhow), but no more extreme cracking/flaking/bleeding. I still haven't bothered going back to the doctors about this particular issue, although every once in a while I do think about finding a new dermatologist and seeing if they can help break the itching cycle for good.

Back to your situation: I would not advise you to take my long-term approach, but I would also suggest you to try to manage your anxiety better. (Easy to say, right?) There are legit reasons to not take doctors' advice as unquestionable dogma, but my feeling in your case is that it's mostly anxiety exacerbated by your family's recent health issues. (Maybe think of their diagnoses as the system catching things and working as it should?) Either way, you need to be able to advocate for yourself with a clear head, and if it is a similar case as mine (as the timeline sort of suggests), lowering your anxiety might help in and of itself.

This has gotten really long, and doesn't actually have much advice, but I hope it helps you calm down a little and think about your situation from another perspective and get your boobs sorted out sooner than mine. Feel free to memail if you have questions I didn't manage to touch on here.
posted by Dr. Sock, WebMD at 1:08 PM on January 18, 2020 [1 favorite]

Not to make your anxiety worse, but my mother is a nurse, my father is a doctor, and they went to the doctor three times about my mother's nipple "eczema" and twice were told it was dermatological. The third time the doctor caught it as Paget's. It had spread to her lymph nodes by then and she was stage 2 by that point. So yeah -- don't discount it, get second opinions, keep your eye on it to be safe.
posted by egeanin at 10:49 AM on January 19, 2020

Get the MRI no matter what you have to do.

I'm an IBC survivor, and nipple color changes were my first symptom (but mine was sore/tender, not itchy). Went to doctor right away (like 2 days after I noticed a change) and ended up as stage 3c at 31 years old. This type of cancer spreads like wildfire - it was bursting out of 15 of my lymph nodes and grew over 4 centimeters in the month between chemo and surgery (yes you read that correctly). That was four years ago and to be honest, the treatment sort of ruined my life - BUT if it had been caught at stage 1 or 2, I wouldn't have suffered so much. I also would have had a closer to 90-95 percent survival rate, instead of closer to 50 percent now.

Also, my mother tested negative for all BRCA mutations, but it turns out I inherited BRCA1 from my father. I'd get those tests done too even if you have to do them out of pocket.

If you don't have BC or a mutation, you'll get great peace of mind and can move on worry free. I hope that happens!
posted by CancerSucks at 3:19 AM on January 20, 2020