Second primary and it’s uber rare? What the heck?

Artbeforeall

Hello all,

Four years ago I went through treatment and, like everyone, truly hoped that was it. But at my regular mammo a couple of weeks ago, they found something that was “completely unusual” and they had zero idea what the biopsy results would be. The results returned with a rare cancer called Adenoid Cystic Carcinoma Of the Breast. Less than 0.1% of all breast cancers are this type.

Fortunately, although unusual as all get out, it has really positive outcomes. So I am hopeful. Definitely getting a BMX though as at age 52 I have only had one normal mammogram at first try, ever.

So question. If its a second primary, which this is, what isthe treatment protocol usually? Do they treat it the same as any other early cancer? Oh, its 1.6 cm and no lymph involvement (this type extremely rarely affects the lymph nodes). I go to the surgeon Thursday but would like to have an idea. Most cancers of this type are treated only with surgery, but I wondered if scans were automatic with second primaries. This type also very rarely ends with mets so I am just not sure what to expect. Thanks so much!

Beesie

Yes, second primaries are treated exactly the same as a first cancer would be.

When we are diagnosed, we tend to worry about a recurrence and most of us don't think about a second primary. But we are women with breast tissue (even those who have a BMX still have a bit of breast tissue) and our breasts have already shown that they provide a hospitable environment for the development of cancer, so it makes sense that we are all relatively high risk to develop a new primary. Breast cancer risk for all women increases as we age (until about age 80), and those of us who've had breast cancer before are no different. So for those who were diagnosed relatively young, the longer time since that diagnosis, the greater the risk that we might get hit with a new primary - simply because we are women at the prime age for a breast cancer diagnosis.

So yes, a second primary is treated just like any other breast cancer. If it's early stage, it is treated just like any other early stage breast cancer. Unless there is some concern that the cancer might be a recurrence (for example, if it happens in the exact same area of the breast), then usually no additional scans will be done.

Glad to hear that your second diagnosis has such a favorable prognosis!

Tmh0921

I was recently diagnosed with a new primary, and it's being treated as a new cancer.

I'm 19 1/2 years out from my original Dx (at 27 years old). I was told back then I had a roughly 30% chance of getting another primary in my lifetime because of my age at first diagnosis.

I had a lumpectomy the first time, this time I'm going for a BMX with reconstruction

Artbeforeall

Thank you so much. Just needed a bit of an idea how this would be handled. Appreciate your help

KBeee

Sorry you're dealing with this again. My mom's new primary was dealt with as a new cancer as well. Best wishes. Hoping your BMX goes smoothly, and that you recover quickly.

Artbeforeall

Thank you so much! I have read and appreciated your posts for years

vlnrph

Since you may have been pre-menopausal at the time of the first diagnosis, did anyone suggest genetic counseling? Sometimes, insurance will cover testing when new tumors are found, especially when under a certain age. Should a mutation be present, you may require more frequent screenings for other cancers such as colon, even when family history is lacking...

Artbeforeall

Hey there, yes I had complete genetic testing, not only because I was 48 but because I am adopted. They found zero mutations on any of the tests, thanks for the response though

AshleyFrasure

Hey I’m so sorry that you are going through this again. I was diagnosed in 2017 at 30yrs old stage 2b had genetic testing, was negative for BRCA 1&2. Did chemo lumpectomy with nodes removed and radiation. I was on Tamoxifen and went for my 2nd annual MRI last month and they found a new spot in same breast near my lumpectomy scar. After my biopsy they found that it was a new primary cancer. My oncologist said because it is a new cancer and not a recurrence, i am again doing chemo and then will have a bmx after. If it were a recurrence, I would of had surgery first and possibly done some kind chemo after depending on pathology. My doc said if he had to chose he’s glad it’s a new primary rather then a recurrence for whatever that may stand for.I hope this helps some and I am sending you prayers 🙏🏼