Just Diagnosed, DCIS suspect of inv. and 3x Neg

I am in the same boat as you. Diagnosed with IDC a week ago and today told its triple negative (which scares the heck out of me!). I am 45 with a 5 year old daughter.

Getting port placed tomorrow and chemo starting soon (don't have date yet).

I have been pretty good about not falling apart but right now just trying not to break down in front of my daughter.

Hi Karen,

Sorry you had to join us. I was in a similar state of mind just 4 weeks ago, when I received the news. First 2 weeks before I met with the team of doctors were absolutely the worst. Waking up in the morning with a paralyzing fear, not wanting to open my eyes and get out of bed, because there was now cancer in my real life (I still had my normal life in my dreams). At the same time hoping this was all just a bad dream and I will wake up.

I am also 40, and this sucks! I also couldn't believe I could get breast cancer at 40, and was very angry. But eventually you will realize that life is not over. It will be a lot of appointments and probably more tests before your treatment plan will be finalized, but eventually it will be. And you will start concentrating on that. And things will still be scary, but not the same type of scary as they are now.

This community is very helpful, so keep us updated and all the wonderful ladies here will be sure to offer an advice, a gentle virtual hug and a good word.

Hi karentwriter:

Sorry you find yourself here. The time between diagnosis and meeting with your team is very stressful. Once I met with a breast surgeon and gained a better understanding of my diagnosis and treatment options, I felt a lot better. I hope the same for you. Meanwhile, many of those diagnosed with DCIS, find this post from Beesie to be very helpful:

A Layperson's Guide to DCIS (first post in the thread): https://community.breastcancer.org/forum/68/topics/790992?page=8#idx_232

I'm not sure what the Moderators meant by saying "it will do you no good to worry now about what you did/didn't do to receive this diagnosis." (Contrary to the plain language of that remark), the idea that anyone did or didn't do something specific "to receive" this diagnosis is unfounded and specious.

As far as healthy lifestyle choices, they are a good idea for many health reasons, but unfortunately they do not provide an impervious shield against an initial diagnosis or recurrence of breast cancer.

Triple-negative pure DCIS (Stage 0) is considered "non-invasive" and is not the same thing as triple-negative invasive breast cancer (Stage IA or above). Literature pertinent to the latter is not relevant to those with pure DCIS.

Pure DCIS is an "in situ" disease, meaning that by the pathologist's assessment, it is entirely enclosed within the walls of the duct and has not invaded the surrounding breast tissue or stroma. By this pathologic criterion, DCIS is considered to be a "non-invasive" form of breast cancer and is considered Stage 0 ("Tis (DCIS)"), and with appropriate treatment has a very favorable prognosis. This is true regardless of ER and PR status (or HER2 status, if determined).

After surgery, if the combined pathology findings from all biopsies and surgeries establish a final diagnosis of pure DCIS (Stage 0 disease), then under current clinical guidelines from NCCN, chemotherapy or HER2-targeted therapy would not be recommended, and endocrine (anti-hormonal) therapy would not be recommended for those hormone-receptor negative (ER- PR-) pure DCIS.

I am a layperson with no medical training so please confirm everything below with your team.

It sounds like your report indicated a diagnosis of triple-negative (ER- PR- HER2-) DCIS, with area(s) suspicious for invasion (said area(s) of unknown ER, PR or HER2 status). Please be sure to confirm your understanding with your team.

A pathology notation of "suspicious for invasion" is not equivalent to a definitive finding of invasion or invasive disease (e.g., a very small area of invasion, such as a microinvasion ("T1mi") less than or equal to 1 mm in size). The pathologist uses histologic tissue stains on biopsy samples to inspect whether the ducts appear to be intact (i.e., the disease is "in situ") OR whether there has been a breach of the myoepithelial layer of cells surrounding the ducts (i.e., an area of invasion). This is not always entirely clear. When the pathologist notes "suspicious for microinvasion" or "suspicious for invasion," it means that he cannot definitively conclude that microinvasion is present, nor can he exclude its presence, because he can't quite tell. If the pathologist can't tell whether there might be a tiny area of invasion or not, then he likely would not have been able to separately determine the ER, PR and HER2 status of it either.

(In cases where an area of invasion is definitively identified (as opposed to suspicion), then regardless of the size of the invasion, the diagnosis would no longer be pure DCIS (Stage 0), but would be a diagnosis of invasive breast cancer (Stage IA or higher). The ER, PR and HER2 status of invasive disease may differ from that of any nearby DCIS and should be separately determined (if possible) and reported in the pathology report (or a supplement/addendum thereto).)

By the way, when you meet with your Breast Surgeon, please inquire about a possible referral to a Genetic Counselor. Under guidelines from the National Comprehensive Cancer Network ("NCCN") for "Genetic/Familial High-Risk Assessment: Breast and Ovarian" (Version 2.2017), early onset breast cancer (defined as a diagnosis of invasive breast cancer or DCIS at age ≤50 years old) is a consideration that supports such a referral: "Consider referral to cancer genetics professional" for genetic risk evaluation. Other factors may further support such a referral.

I note that "[t]he criteria for further risk evaluation and [for] genetic testing are not identical." As part of a genetic risk evaluation, a personal medical and family history are taken, a genetic/familial risk assessment will be performed, and a recommendation will be made regarding genetic testing. If recommended, the scope of such genetic testing (e.g., which genes), as well as the pros, cons, and limitations of such testing will be discussed (important elements of informed consent). The patient may pursue or decline any recommended testing at their option.

Best,

BarredOwl

Hi karentwriter:

I should have mentioned that as best practice, one should request complete copies of the pathology reports from all biopsies and surgeries, and any addenda or supplements to those reports, including the results of any related testing (e.g., ER, PR, HER2 testing) for your review and records. Confirm the accuracy of information received orally against the actual report content bearing your name. (Trust but verify.)

Summary information from a patient portal is not sufficient, because it may not extract all important details and/or errors may be introduced when typing in the information.

Usually, one can pick up copies from a nurse navigator or the administrative assistant of your surgeon. In some cases, reports were forwarded to me in electronic form (.pdf) via secure email upon request. I kept a three-ring binder with copies of all written reports from all imaging, as well as all biopsy and surgical pathology reports.

The Medical Records Division of the institution where any imaging or biopsy was done is another possible source of written reports (and electronic copies of digital imaging records on CD). Be sure to call in advance to request specific materials (e.g., with reference to procedure dates). Ask for a pick-up time and location, as well as any related requirements (e.g., photo ID, possible fee).

BarredOwl

I'm new to this site and I wish I had all this information before my surgery in June.

I might add that some practices have a Breast care coordinator that can be very helpful with questions or practical information also.

I really think the info on this site is very useful. It is normal to have a million questions and worries. You are not alone. 1 in 8 women get diagnosed. You are stronger than you think. No matter what the news is, it is always better to know than not. The diagnosis does not rule you, you have options and you will discuss and make a plan with your doctors.

Hi Karen,

I was diagnosed with Stage 2b TNBC in July and I'm 40. I have 3 kids 20, 17, and my only daughter is 15. I was also so worried about what that meant for my daughter. The only people in my family to have breast cancer was my great grandmother and a couple distant cousins. I had the genetic testing done and was so glad I did. My oncologist and my surgeon both told me about the test and wanted me to have it cause of my age. Definately talk to your oncologist about it. I know you feel like you're in a whirlwind right now but things will get better.

Hi Karen:

If a person is found to have a "pathogenic" mutation in a gene that confers a significant increase in lifetime risk of breast cancer, then they may consider a number of options:

(a) enhanced surveillance (additional breast cancer screening);

(b) chemoprevention (use of anti-hormonal therapy to inhibit new tumor formation in the same or opposite breast); and/or

(c) prophylactic surgery (e.g., prophylactic bilateral mastectomy).

In such a patient, who has also been diagnosed with breast cancer, such a pathogenic mutation may affect treatment recommendations /choices, such as (for example) a recommendation for mastectomy (versus lumpectomy) plus contralateral (opposite breast) prophylactic mastectomy.

Mutations in some known cancer predisposition genes may also confer increased risks of other types of cancers (e.g., ovarian cancer, melanoma, colon, prostate (in males), etcetera). In some cases, additional screening (e.g., colonoscopy, skin exam) may be recommended and/or prophylactic surgery (bilateral salpingo-oophorectomy (removal of ovaries and Fallopian tubes)) may be considered/recommended.

There can be implications for other family members. For example, if a person carries a pathogenic mutation in a cancer predisposition gene, each child has a 50:50 chance of inheriting the mutated gene copy.

BarredOwl