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Here I am again

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tpartrid
tpartrid Member Posts: 9
edited August 2021 in Waiting for Test Results

Hi Everyone,

I have been an infrequent visitor to this site since 2005 (or was it 2006, can't remember). At that time, I had archtiectural distortions that resulted in an excisional biopsy within a week. I got lucky and it turned out it was sclerosing adenosis and atypical ductal hyperplasia. I have been vigilant since then (ADH), but all concerns have been considered benign over the years. I had a total hysterectomy due to ovarian cysts and fibroids at 46 and now 51. I took estrogen replacement to combat the hot flashes and now on the low dose patch. I have a 40% chance of breast cancer in my lifetime according to doctor, but no genetic markers based on what is currently known in genenetic testing. My paternal aunt and her daughter both had breast cancer in late 40s, and her son had testicular cancer (probably not related to the others). My dad had prostate cancer diagnosed at 56. My cousin was the only one to survive more than 5 years.

I had my first breast MRI in 2019. My gynocologist reminded me recently that I'm supposed to do those more often, so I got another one in June. My insurance will only cover 1 mammogram per year and that isn't due until August. This MRI went better in that my anxiety stayed under control and I didn't have a grumpy technician talking about me while the door was open and I could hear him. They also let me listen to my playlist.

I went on my merry way assuming that no news was good news. Then I got a certified letter notification from the hospital. Called gyno office and told by the nurse that the doctor must not have seen it and then went on vacation. An area of concern showed up so the nurse put in orders for diagnostic . Knowing that MRIs have high false positives, I assumed that all I needed was the mammogram and ultrasound to clear me so did not make appointment with breast surgeon. Well, that was a mistake, because apparently a needle biopsy would be recommended regardless, and now I have to wait. And of course, my surgeon will be on vacation then doesn't have openings until the 19th but then I will be on vacation. So the date is set for us to meet on July 30th. I emailed her the results, and that didn't trigger an earlier date, so that is probably a good sign.

I'm curious if anyone has had a similar MRI report to mine. I know that is no assurance one way or the other, but I'm just trying to come to terms with possibilities.

Right Breast: 6X5 focus of enhancement, the intiial phase divded between rapid and medium and kinetic composition mostly persistent and plateau but with a small amount of washout. This appears to be very near to or at the site of remote excisional biopsy.

mammogram and ultrasound were both negative. MRI said scattered fibroglandular, but radiologist that did the ultrasound and mammogram said heterogeneously dense.

Recommendation: MRI guided biopsy (ugh, I got to get in the tunnel again)

From what I have read here (thank you!), and research journal articles, I figure these are the possibilities:

1. benign (any idea which conditions might show kinetics like this for non-mass focal benign)?

2. DCIS (maybe because the kinetics are wacky and a little of everything)

3. ILC (maybe because non-mass focal and kinetics)

The good news is that it is likely small whatever it is. My goal right now is just to be patient and have lots of fun in July to distract me. But I'm also not perfect, so there are going to be times that I revisit. I wish it could all be resolved before my vacation but unrealistic at this point.

I love the positivity and logic in this group!

Thank you!

Comments

  • kathabus
    kathabus Member Posts: 45
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    I had plateau and washout kinetics and it was benign finding—a papilloma. It wasn’t seen on the mammogram and couldn’t be seen on an ultrasound because the nipple was creating a shadow. Similar size to yours 6x4x7mm. Wanted to share a possible benign finding for you. Enjoy your July and keep us posted when you get your results—Good luck!

  • moderators
    moderators Posts: 7,907
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    tpartrid, welcome to the BCO Community! We are sorry that these breast changes have brought you here but we are glad that you reached out.

    Please keep us posted on your appointment on the 30th and what you find out. In the meantime, we hope the next weeks goes by quickly and keeps you busy! Please keep us posted!

    Good luck!

    The Mods

  • tpartrid
    tpartrid Member Posts: 9
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    Thank you so much, kathabus! It is good to hear a possible explanation for benign. I teach and research in psychology, so I am a researcher at heart. I always like to know all possibilities. I'll be sure to post the results in case it helps anyone else with similar findings.

  • LivinLife
    LivinLife Member Posts: 301
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    Just want to send well wishes and support! Glad you have some enjoyable distractions this month!

  • tpartrid
    tpartrid Member Posts: 9
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    Thank you for your message, LivinLife and Moderators! I really appreciate the supportSmile

  • tpartrid
    tpartrid Member Posts: 9
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    My MRI biopsy is now on July 16th, so sooner rather than later. Yay! Then I leave for Hawaii on the 19th and meet with the breast surgeon on the 30th. Hopefully, they will post my results so I can read the report online.

    New question: Is an MRI biopsy enough to rule out malignancy? I ask because my previous core biopsy was not enough to rule out, and I had an excisional biopsy several years ago.


  • kathabus
    kathabus Member Posts: 45
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    Sounds like this will be a MRI-guided core needle biopsy. Assuming they obtain the correct area of suspicion….which I’m sure they will…..this will tell you one way or the other if the tissue sample is malignant. Maybe there are rare instances where it is indeterminate….but generally speaking you will know!

    During mine they did a lot of fine tuning to get the itty bitty exact spot. I would feel confident that you will get an ananswer!

  • tpartrid
    tpartrid Member Posts: 9
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    Thank you for your quick reply, kathabus! That is good to hear. I'm in a good place mentally! So I am ready for any news. I went to an outdoor wedding this last weekend and danced my rear-end off. I plan to approach my Hawaii trip the same way! I have fibromyalgia, so hopefully my body won't rebel too much from the needle. Mind over matter!

  • tpartrid
    tpartrid Member Posts: 9
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    Hello again,

    I made it through the needle biopsy on July 16th without having a panic attack. I was in pain for several days, but still able to stay up and relatively active. I have a low pain tolerance (and fibromyalgia), so I do not represent what most people experience. According to this report, the pre-operative potential diagnoses were DCIS/IDC, fat necrosis, or scar tissue (with scar alone considered unlikely.

    The good news is that no cancer cells were found. The radiologist believes that the areas of concern from the MRI were due to fibrocystic changes. Unfortunately, ADH was found again and the advised course is to proceed with an excisional biopsy. I meet with the surgeon on Friday to see if that is what we will do. The report contained information that I have not run across before. Please, let me know if there is any insight on focal microcalcifications, cellular bridges, or stromal elastrosis. CK 5 is a new one for me too.

    Path report: "...predominately usual fibrocystic changes. Focal microcalcifications are seen. Isolated small areas contain stromal elastosis. 1 of these areas contains cells that appear enlarged and somewhat atypical suggestive of atypical hyperplasia. A small gland containing a somewhat complex pattern with a cellular bridges seen on slide #5. These areas are stained with CK5 and estrogen. On slide #2, CK 5 is decreased in these areas. No residual tissue is present on the estrogen stain for evaluation. The small areas on slide #6 also has no residual gland for evaluation. The histology and decrease CK5 suggests a possible area of atypical hyperplasia associated with stromal elastrosis. No features of carcinoma in situ or invasibve malignancy are seen."

    BTW, the trip to Hawaii was awesome!

  • LivinLife
    LivinLife Member Posts: 301
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    Good news on results tpartrid!!! Glad you enjoyed your trip to Hawaii as well.

  • tpartrid
    tpartrid Member Posts: 9
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    I met with the surgeon to discuss excisional biopsy. She said the deal with adh is to make sure it is really adh and not cancer cells. Because the mri guided biopsy took a decent sized sample, she thinks there is only a 5% chance of finding dcis. Even then, it would still be easily treated. The excisional biopsy is scheduled for August 12th with results on August 30th.

    I thought that I had read that adh is precancerous, but she said it is not. Those definitions are still a bit confusing, so I thought I'd share.

  • LivinLife
    LivinLife Member Posts: 301
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    Thanks for the update! DCIS is pre-cancerous or pre-invasive cancer depending on how one thinks about it.... I think adh is often removed anyways - kind of what I hear about radial scars, etc. Even though they are not pre-cancerous I believe these increase some risk? I can see why such things are confusing.... See what others say - I'm not really well-versed in these kinds of things.... So more waiting though at least you generally know what you're dealing with. I hope no surprises for you though even if DCIS you can deal with that - more involved than adh though still do-able....

  • tpartrid
    tpartrid Member Posts: 9
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    I had surgery to remove area of concern on Thursday. So I am still waiting for test results. At least this time, I should get a definitive answer.

    Placing the wire took two tries as the first was not long enough. I thought it was going to be with ultrasound, but it was with mammogram. I asked them to keep talking to me throughout to distract. The spot was near chest wall, so some skin and muscle from under had to also be squeezed in.

    The surgery went well. Likely due to the depth and my low pain tolerance, I needed the maximum meds in the recovery room.

    I took Tylenol 3 home with me but didn’t get to the pain necessary o take it (7-10), so that was a good start. I should have taken more Advil the first day to help with inflammation. Friday, pain was okay until later in day. I really struggled with pain on Saturday, but seem to be better today.

    This was the confusing part. I was told to take everything but steristrips off the next day and shower. I got confused on what was just tape and what was steristrips. Previously when I had steristrips, there was just a layer and I could see through them to the incision site. Apparently this time, they cross crossed in an inverted U around the nipple, but I pulled some I probably shouldn’t of before calling nurses line. So as advice to others, get nurses to specifically describe what they mean by what should and shouldn’t be removed. They may add more strips as support. So now I’m concerned about how the scar may turn out since I weakened the material. I’m usually pretty smart, but not sure why I’m getting these things wrong.

    I’m honestly getting a little worn down waiting for results even though I am logically aware that very low chance of cancer at this time.


  • LivinLife
    LivinLife Member Posts: 301
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    tpartrid, I think you just have a lot on your mind and so instructions with things like steri strips get tuned out, even if you're listening when they talk to you. That's what I do anyways... I'm listening though I'm also tuned out. Steri strips after biopsy are not what's foremost on my mind at such times.... Best with this stretch of waiting.... Thursday.... so I'd hope maybe by mid-next week you'll hear something? I hope you've been able to keep yourself somewhat busy distracted so far...... Hang in there and let us know once you hear something.....

  • tpartrid
    tpartrid Member Posts: 9
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    Update: I thought I had put this up on the 17th, but must of not submitted it. The pathology report that was posted on the patient portal showed NO malignancy. It also appears that the needle biopsy got all the ADH in the area. Other things that showed on the biopsy were fibrocystic changes with apocrine metaplasia and incidental intraductal papilloma (small). My surgeon referred me to a medical oncologist to discuss preventative medications. She took out the "anchor" stitches today and said I may continue to have some pain for a couple more weeks. The pain goes away for a few days then comes back with a vengeance, probably due to changes in activity level.

    I was a little disappointed that the surgeon's office did not contact me to make sure I saw the report. 2 weeks is a long time in stress world to wonder if I had not checked the patient portal. Fortunately, the hospital believes in immediate distribution of the reports to patients. Otherwise, I'm happy to have a break before next decision and tests.

    Thanks for encouraging me through this time.

  • LivinLife
    LivinLife Member Posts: 301
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    That is a shame you had to wait so long to hear.... So glad benign though! Take good care!