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Zero to Cancer in Just a Few Clicks

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NY2RI2NC
NY2RI2NC Member Posts: 15
edited February 2021 in Not Diagnosed But Worried

Let me start by admitting that anxiety is in my DNA, and my health anxiety in particular has gotten worse as I've gotten older. I'll be 63 next month. I've always been diligent about breast self-exam and mammogram appointments. Have had various benign issues (cysts, fibroadenomas). The skin texture is normal --- no raised, rough, or scaly patches. Not itchy. No pain or tenderness; no feelings of warmth or heaviness. Breast shape is unchanged; no swelling. Symmetrical with left breast (although the left has always been a tad larger). Haven't felt any dominant lumps. Nipple is normal; no discharge. Looks the same today.

I am extremely fair skinned, and overall my skin is very thin and sensitive. I'm very careful about what I use in terms of soaps, laundry detergents, etc. and haven't changed any of that recently. I do have lots of cherry angiomas, skin tags, and seborrheic keratoses (all benign) that my dermatologist is not concerned about. It's the fact that I'm seeing this diffuse area on the breast (doesn't look "solid" like a sunburn or a definitive patch) that's freaking me out.

As usual couldn't help myself and off to Dr. Google. Went from zero to inflammatory breast cancer in a couple of clicks. I messaged my GYN through the online patient portal. Nurse answered first and advised that I see my PCP. I responded that my PCP has never even seen my breasts, nor has he ever done a manual exam. He knows that I see my GYN for that. I had my annual GYN check-up in early December. She does a very thorough breast exam, and she said everything felt perfectly normal.

So here I am, about 6 weeks later and convincing myself of the worst. I know I suffer from anxiety, and lockdown has made it worse. I'm also coming up on the 1-year anniversary of needing totally unplanned surgery to repair a macular hole in my eye. Never missed a check-up for that either, and yet here I am still struggling to accept long-term vision problems caused by that. I keep re-running the lead-up to this and wonder whether there was something I missed that could have changed the outcome. Doing the same thing now with my breast.

I've learned that IBC is rare, but that won't stop my head from going there. The nurse at my GYNs office said she referred my message to the Dr. but haven't heard back yet. I have an appointment to see her in about 2 weeks, and my annual screening mammogram is scheduled in about a month.

This is such a supportive group. If anyone reading this can offer some insights or wisdom, it would be greatly appreciated.




Comments

  • beesie.is.out-of-office
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    NY2RI2NC,

    I'm about the same age as you, and between my osteoarthritis and chronic sinus issues, I always have new aches & pains that pop up. I also have a personal history of breast cancer, and that obviously adds a different dimension to my concerns. So here's how I assess what I read on Dr. Google. Let's say I have symptom A. I google it. It shows up with 8 possible diagnoses, most not serious but then there is 'Disease X' that is very serious. I look at the details for 'Disease X' and notice that it includes a list of 7 common symptoms, of which I have only that one. Based on that, I comfortably knock Disease X off the list. I mean what are the odds that I have that rare disease when I have only 1 out of 7 symptoms, and the 1 symptom I have is very common for so many other less serious and much more common conditions? I have talked myself off the ledge dozens of times by following this approach. So far I haven't been wrong once.

    IBC has 7 or 8 usual symptoms. You have 1. Therefore the likelihood that you have IBC is pretty slim. Keep your appointment with your GYN, but consider an appointment with a dermatologist, since it would seem more likely that this is a skin condition rather than a breast condition.

    Good luck, and let us know now it goes.

  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Hi Beesie and thx so much for reaching out to me today. Sounds like you've got quite enough on your plate also, and I will keep you in my prayers. Anxiety is a terrible burden that has taken so much joy from my life. Both of my parents were chronic worriers, although they handled it quite differently. I'm sure you've heard the quotation, "I have known many sorrows, most of which have never happened." Your risk assessment method seems practical. I will give it a try and will keep you posted. In the meantime, still hoping my GYN will respond via the online patient portal, and I'm planning to keep my appointment with her in about 2 weeks. Maybe I'll luck out and there will be a cancellation.


  • minustwo
    minustwo Member Posts: 13,119
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    NY - it sounds like you have a regular dermatologist. Since this is a skin thing - that's who I'd go see.

  • alicebastable
    alicebastable Member Posts: 1,945
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    My parents were chronic worriers. I'm not. You don't have to use heredity as a reason to repeat behaviors. Look at what they were like and tell yourself "Ew, I don't want to go through life like that!" 😊

    And listen to Beesie and Minus Two. They combine a ton of knowledge with common sense.

  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Thx for reaching out. Yes, I do have a regular dermatologist. Am hoping to hear from my GYN first before making an appointment. He's not "in network" for my insurance, and she might want me to see someone affiliated with the hospital I use.

  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Knowledge and common sense is a valuable combo! These ladies have a lot of wisdom to share, I'm sure. Thank you.

  • minustwo
    minustwo Member Posts: 13,119
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    NY - I do understand about a doc in the network. But consider if your dermatologist has been following your skin for any amount of time, I'd go to someone who knows my body.

  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Update ---

    Thanks to a cancellation, I was able to see my GYN this morning. Had it not been for someone else bowing out, I would have had to wait until next Friday to see her, so I was very grateful for that.

    She is not overly concerned about the appearance of the skin on my right breast. She feels it is a skin issue, not a breast issue. She has described it in her notes as superficial spider-like veins. They are most visible when I'm sitting or standing and incredibly faint when lying down. She saw a similar but smaller, less prominent area on the left breast. She was very clear in stating that this absolutely does NOT resemble the redness/rash that can come with IBC. So I'm breathing much easier on that issue.

    But (there's always a but!) she did note a fibrocystic change to the right breast. That came as a bit of a surprise, as I saw her for my annual visit (which included a clinical breast exam) about 6 weeks ago. It is described as a 10 x 6 mm smooth, firm mobile lesion at 8 o'clock that palpates as a lymph node. It feels close to the surface, if that makes sense.

    Her impression is that this is NOT a worrisome finding, but advised foregoing my upcoming screening mammogram scheduled for Feb. 20. I'm now having a diagnostic mammogram and ultrasound on Feb. 3 instead. If imaging comes back normal, she'll have me see my dermatologist.

    My head can't keep up with the moving pieces. Starting to feel like I'm re-arranging the deck chairs on the Titanic. I did discuss with her my interest in finding a therapist who could help me with my health anxiety, so she's going to get me a referral for that.

    I'm open to your wisdom/experience on this latest wrinkle.





  • 2019whatayear
    2019whatayear Member Posts: 468
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    The amount of anxiety you are having is disproportional to the situation so I think it is great you are going to talk to a therapist. It may be helpful to keep in mind the diagnostic mammo and ultrasound will only have a few outcomes none of which will be to tell you you are ready to shuffle off this mortal coil. The result will be 1- everything looks fine no worries, 2. we are really sure everything is fine, but we want to check again in 3 months or 6 months, 3. Something looks weird- let's schedule a biopsy. And even if it #3 like 80% of the time a biopsy is *not* cancer.

    hope everything turns out to be no worries!


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,853
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    I agree with 2019. You are about as far from rearranging the deck chairs on a sinking ship as one can possibly be. I am very happy to hear that you are looking into therapy. Take care.

  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Thx 2019 and exbrnxgrl for your input. You both are strong women. I can feel that coming through.My GYNs office left a message with the behavioral sciences dept to get in touch. Hoping to hear from them soon. My anxiety issues reached a new high last year almost to the day. I was diagnosed with a macular hole in my left eye on 1/27/2020.. Had perfect vision my entire life; never missed a check-up. Surgery was a technical success, but I'll never get my 20/20 back (won't even be close) and the distortion can't be corrected with glasses. I'm also now at increased risk for having this happen in the other eye, so that's monitored closely. Cataract development is an almost certain side effect of the surgery. Some patients get that very quickly, but I'm still waiting. Everyone tells me that's a piece of cake compared to what I've dealt with so far.

    In the meantime, just waiting for the testing is always hard. Scheduled for diagnostic mamm and diagnostic u/s this coming Wed. afternoon in back-to-back appointments. This is where I've been having my mamms done for the past 8-9 years. When you go for a screening, you get same day results. But I'm not even expecting that to happen this time. I'm guessing a few days. Results are supposed to pop up in your online patient portal; my GYN will contact me only if any further intervention is needed. Praying NOT to get a phone call.

    exbrnxgrl --- I'm guessing from your username where you're from. Familiar with the area, as just over the line into Westchester was home for me.





  • exbrnxgrl
    exbrnxgrl Member Posts: 4,853
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    You guessed correctly! Born and raised in the Bronx, though I ventured all the way to Queens to attend college. I have lived in CA for over 30 years now but my roots are important to me

  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Wow! You made it to Queens! And yes, I feel the same --- it'll always be home for me.

    Any advice on how I can hold it together as I go through this process? I know I'm driving my husband crazy. He has anxiety issues of his own, but he handles it differently. My mom is long departed; no sisters. One friend has been battling BC for 3+ years and is now receiving palliative care. Another is a survivor, and I know exactly what she'll say, "Don't go borrowing trouble."

    Limited options because of COVID restrictions; the eye issues mean I can't spend tons of time reading or doing any kind of handwork (which is usually very relaxing for me). Waiting is the pits.





  • 2019whatayear
    2019whatayear Member Posts: 468
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    I think since we are in the midst of a pandemic everyone feels a higher level of health anxiety than they would otherwise and then you layer on that you've had a health issue already that has caused you to have anticipatory anxiety for any test.

    At the end of your ammo and US you will get results like I said in the other post- A. all good B. come back in 3/6/ months or C. we want to do a biopsy.

    I'm cheering for you!

  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Thx for your encouragement. I appreciate your good thoughts. Yes, I will definitely post an update here once I know more. This forum is so supportive, but I do find it frustrating when I can't find out how a particular story ends. I know that folks have different comfort levels about how much they want to share and when. I also know that someone might in fact get good results and just literally say they're outta here!

  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Managed weekend anxiety by staying as busy as possible --- bathroom now incredibly clean!

    The questions keep swirling, however:

    My GYN has described the area of concern as "fibrocystic changes to the right breast" Can this still happen after menopause? My last period was 9+ years ago. And last breast incident/intervention was 10+ years ago, when I was diagnosed in this same breast with a benign intraductal papilloma. That was removed during the course of an u/s guided core biopsy. Prior to that, both tiny cysts and a fibroadenoma were noted on past mamm reports, but they were just followed. I never felt any of these; they were seen on mamms. But now that my GYN has felt this area, I'm feeling it also, and it's freaking me out. When she did my clinical breast exam in Dec., she said everything felt perfectly normal.

    I'm not taking any hormones. I do use a very small amount of Estrace cream to manage dryness and deal with some urinary tract issues.

    What benign fibrocystic changes are common to menopause? What could present itself this quickly? Testing this Wed. can't come fast enough and hoping I won't have to wait too long for results. This is my regular screening facility. If you have your mamm on a Sat. appointment, you leave with results in hand. I highly doubt that will happen this time.



  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Imaging update: had my diagnostic mamm and diagnostic u/s today.

    Left side all good.

    Right side shows a cyst (fluid filled and almost certainly benign), but there's also a solid area right nearby that needs further investigation. Could be another intraductal papilloma (had one of these 10 yrs ago, turned out to be benign). So I'm now scheduled for an u/s guided core biopsy this coming Monday.

    Both techs were great. My husband and I had the opportunity to discuss at length with the radiologist. His impression is that this will turn out to be benign, but impressions don't count. I'm actually kind of relieved that he didn't suggest the "let's come back in 6 months" approach, as that's not a good fit with my anxiety.

    He said that even if the worst case scenario came to pass, this will have been found at a very early and very treatable stage.

    We'll see what Monday brings. I'm the first appointment of the day. He said I would get a call from the pathologist either way within a few days.

    So that's where we are --- will keep you posted. Thx to all of you again for the support and good wishes.



  • beesie.is.out-of-office
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    Glad that it went well today, all things considered. I'd say that the radiologist's impression does count - they often have a pretty good sense of whether something will be benign or malignant. But of course, it all comes down to the biopsy.

    Good luck Monday!


  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Hi Beesie and thx for checking in. And yes, it all comes down to the biopsy. Hoping they'll get what they need to get and see what they need to see with the u/s guided technique and that an excisional biopsy won't be required.

    I appreciate your good wishes and will keep you posted

  • 2019whatayear
    2019whatayear Member Posts: 468
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    sounds good so far, glad you are getting the biopsy done quicky, less worry time!

  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Yes, anything that minimizes worry time is a plus. Radiologist said biopsy was a technical success; now it's just waiting on results. I was told 2-3 business days. No discomfort so far. Sent home with an ice pack that fits in my bra and taking Tylenol. Thx for the support and will keep you posted


  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Just got a call from the radiologist ---- benign results!

    The report reads: fibrocystic changes including papillary apocrine cyst formation. Negative for malignancy.

    He told me no further action required and I can return to my yearly checks.

    Beyond grateful and relieved. Thx to all of you for your support. Please know that I include everyone on this board in my prayers.


  • minustwo
    minustwo Member Posts: 13,119
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    Hooray. Congrats NY2

  • alicebastable
    alicebastable Member Posts: 1,945
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    🌞🌞🌞🌞🌞 Happy day!

  • beesie.is.out-of-office
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    Great news! Congratulations!

  • 2019whatayear
    2019whatayear Member Posts: 468
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    so happy to hear your good news!!!

  • tntnsd
    tntnsd Member Posts: 124
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    Great news , happy for you

  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Thx for all the kind words and support. Very comforting to know there are angels like you out there.

    Even though I've been down this path before, past experience doesn't make it any less scary. If there's one benefit to come out of this, however, it's that I've come to realize that I need to work on the debilitating anxiety --- now. Stuff is going to keep happening just by virtue of my getting older. I don't want to keep living this way. My GYN put me in touch with a therapist in this same hospital system. I now have an appointment set up with her for mid-March. No in-person visits, so I'll have to figure out how to use Zoom. Maybe I can find a young child to help me LOL





  • exbrnxgrl
    exbrnxgrl Member Posts: 4,853
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    my,

    Zoom is super easy. You will receive and invite with a meeting number linked. Click on the link and you’re in although some hosts will require a passcode. If that is the case, it will be included in the invite. Do make sure that you have your video and audio turned on. Very easy! There is a free Zoom app for IOS and probably for Android as well, but you don’t need the app as it works well through the browser

  • NY2RI2NC
    NY2RI2NC Member Posts: 15
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    Thx for this info! While I was in my patient portal, I looked at the appointment details for this Zoom visit. They provided step-by-step instructions that seem easy enough to follow. So much easier than having an in-person visit!