Hi sorry that scan has shown changes ..try not to second guess the change that has occurred ..cancer is good at hiding some types even are not visible so difficult to diagnose

starting treatment is now the priority..

it was same for me one year nothing next bc hormone positive.

All the best

Bright in hope

I have had a somewhat similar experience with my diagnosis. I’m only 44, with dense breasts though.

My last mammogram had been 12/2018 and at that time they had been focusing on my left breast. I had been going every 6 months for the magnified views and ultrasound for a year and a half, finally ending in a benign biopsy that December. 11/2019 had my yearly appointment with breast exam, “everything looks good, make sure to get your mammogram done”. 1/15/2020 mammogram, 1/28 magnified views and ultrasound of right breast, 1/29 biopsy, 2/3/2020 given diagnosis of DCIS. Went to first appointment on 2/17, told I have DCIS and IDC, and by the way instead of a lumpectomy w/radiation you’ll need a mastectomy because the tumor is 30 mm. The 1/28/2020 ultrasound found that my lymph nodes were clear but my doctor “felt something there” and we need to check it out. The lymph nodes ended up being positive as well.

So yeah, my first question was how the hell did this happen?? They blame my dense breasts, of course and say it may have been hiding. And yes they say it’s a slow-growing, nonaggresive type blah blah but it sure doesn’t seem that way. My Onco score is 14 but I have to get chemo because of several factors that say the cancer didn’t behave the way they expected it to. I start treatments on 5/15.

I’m doing my left side later this year. I don’t trust that they’ll catch something in time and frankly I don’t ever want to go through this again. I always say that you have to be your own advocate and if you think something isn’t right or want more eyes on it, speak up!

Best of luck to you,

AS

IDCDCIS, wow, your diagnosis must have come as a shock! Your situation is different though because of your age and breast density. High breast density is common in pre-menopausal women - about 75% have dense breasts - and it's well known that mammograms can miss breast cancer in dense breasts.

I was diagnosed at 49. I had extremely dense breast tissue. Because I'd been dealing with breast issues almost all my life (I had my first surgical biopsy at age 16), I never missed my mammos. One year my mammo was clear, and the next year two small areas of calcifications showed up - not highly suspicious but enough to warrant a biopsy. My stereotactic biopsy found only ADH, my excisional biopsy found grade 3 DCIS with comedonecrosis in both areas along with a microinvasion of IDC. Having no clear margins, I proceeded to a MX, which found a lot more high grade DCIS. I did have an MRI between the excisional biopsy and the MX, and the MRI spotted the rest of the DCIS that my mammogram and ultrasound never found. Not quite the same situation as you, since my undetected invasive cancer was so tiny, but it makes the point about how much things can hide in dense breast tissue. One year my breast was clear, the next year my small breast was literally full of over 7cm of high grade DCIS, which had just started to moved beyond the ducts (the microinvasion).

In the OP's case, it sounds as though mammogram screening worked well for her, finding her cancer when it was still very small. A year prior, even if it was a slow growing cancer, it would simply have been too small to be spotted.

My BS told me that it was lucky that the 5mm tumor in my right breast was found by MRI. The mammogram didn't see it. My breasts were dense, so that probably contributed.

They only looked for it after they found ILC in my left breast, but still interesting that a 5mm tumor would be hard to find.

So means to me that your tumor last year could have just been missed because it was too small.

Hi wtfwiththeusername !

I agree with Beesie and others -- based on what I have read, it seems like it is completely possible that your tumor was not detectable size in August 2018. 1 cm is not a lot of growth for a tumor in one year. I have heard of HER2+ tumors growing a 1 cm in one month! It is pretty amazing to me that you could feel it! So your August 2018 mammogram was probably not a false negative and your pathology could be correct.

At diagnosis I had an 8 cm x 9 cm mass. It made my nipple invert, which prompted a mammogram five months before I was actually diagnosed, but I have very dense breasts and the mammogram came back as a false negative. It must have been at least a few centimeters, and was not visible on the mammogram. (I should have been sent for MRI at the time, but that's a different story-- I live in a rural area without much cancer expertise -- especially not in young women. I am 33 and doing chemo now since it's in 3 lymph nodes.)

After my experience I completely agree you have to be your own advocate, though. If it would ease your mind, you might consider going to a specialist clinic for your periodic screening. If you google "breast clinic" you can find the one closest to you.

Also-- if anyone is considering a second opinion on your pathology, both Mayo Clinic and Sloan Kettering offer remote second opinions on biopsy samples.

All the best to everyone!

ps: I like your username, it's spontaneous which is kinda fun!

Six months after my mammogram I felt a lump and was diagnosed with a 4 cm tumor and positive node. Dense breasts but no one told me that. I thought for sure it must be fast growing but it was grade 2 and my MO told me it had been there for some time. No doctor wouldsay that somebody screwed up but that's what I think. That's why I had BMX, I'll never trust a mammogram again.

Bright55, hello. How ate you doing,? I was wondering if you could give me some information if you know. I got br ca in late 2005. Grade 2, stage 1, lumpectomy, chemo, radiation whole breast. Anyway, a couple of months ago I finally saw an asthma allergy specialist. They did the routine chest xray and at first the PA at asthma place said it was fine that they usually worry about things other than calcifications area I had. Then two weeks later the PA calls me up to say that she reviews cases with the dr and he wanted me to follow up w pulmonologist. Ok finally got appt Apr television television and she says can't see it that well and that calcifications are in hilar region where everything comes together in lungs. Orders CT scan for tomorrow at 3:30 pm. Anyway, what I'm asking is how did you find out about lungs, only if you dont mind me asking. They are pretty sure it's okay but said chance it is not too where I would then need a biopsy. They are following up due to my br ca. So...anything you can offer for information would be great! Thank you. JCP

Iamloved, why thermogram instead of the Mayo recommended mammogram? Thermograms are specifically forbidden for use as breast diagnostic tools by the FDC as they are ineffectiv.

Iamloved, your situation is interesting. I'm trying to put the pieces together of what happened, and if I'm understanding correctly I think the letter from Mayo, while obviously an error, is a red herring. Since you went for the biopsies in August 2018, I trust that after your imaging in July or August 2018, you were informed by the Radiologist or your PCP or the Breast Surgeon that something of concern was seen and you needed to have the two biopsies. So this would mean your follow-up wasn't influenced by that erroneous form letter.

Did you ever get a copy of the imaging reports? And did you get a pathology report from the biopsies? Since your new cancer is in the same location as that second biopsy, it would be interesting to know what that biopsy found. It's possible - likely maybe - that the mass was there all along, but the biopsy happened to pull up benign tissue from the area of the mass rather than the cancer cells. What imaging did you have that led to the biopsies? A mammo, an ultrasound or both? After the one area was diagnosed, did you have an MRI prior to surgery? A lot of surgeons send their patients for MRIs just be sure that nothing else is going on.

Is this second diagnosis also HER2+? HER2+ cancers are particularly aggressive and fast-growing, so if it was there but small in mid-2018, 2 years later it could be quite large. If you extend the graphic that I posted previously, with a 100 day doubling time, a 2cm tumor would be 8cm within 2 years. You may have had a smaller tumor 2 years ago, but if it's HER2+, it might have a faster doubling time. Another possibility, if this tumor is not too far from the original cancer, is that this is a recurrence rather than a second cancer. Given the number of smaller tumors, that might be the case. Here again, with an HER2+ cancer, a short-term recurrence and fast growthwouldn't be extraordinary. Did you do rads last time round?

Iamloved, it's really too bad that you didn't have the MRI last time - it might have spotted this while it was smaller. I know that MRIs result in a lot of false positives, but once someone has already been diagnosed, I really don't understand why all breast surgeons don't insist on an MRI prior to surgery, just so that they have as clear a picture as possible, before they go in and operate.

That said, you are absolutely right - there is no point in dwelling on the past.

Good luck with the PET. I really hope that this is a localized recurrence.