Father Says I "Did Not Have Cancer"

KARW41

I wanted to ask you all: I just got a bilateral mastectomy due to 10 cm of DCIS.

The mastectomy found a totally separate area of DCIS that the mammograms, ultrasound, MRI, two biopsies, and lumpectomy did not see at all, as a side note (1 cm worth hidden).

I did just fine and had minimal pain.

Just heard the lymph nodes are clear and 4 mm margin from the chest wall.

My question is: My Dad says I "did not really have cancer" and he told our German relatives (his side of family) that I did this surgery "because I wanted to."

He also said, "you don't see your sister going out and doing that."

To be fair, he is 82 and he was a bit of a bully to my mother in their marriage.

My brother basically said the surgery for DCIS "was not necessary," but then when I explained about the lumpectomy and two biopsies and results from that (not clear margins), he seemed to understand.

Our mother died of cancer while that was all going on for me.

I think my sister is in a bit of denial and does not really want to hear about my situation much, although she cares how I am doing, since our mother just passed away after having breast cancer three times and pancreatic cancer once.

And, her husband passed away two years ago of bladder cancer.

She does not really want to hear anything about it from me, despite the increased risk to her from having a mother with it three times, and me with it once.

I tried to tell her to request MRI's and enhanced screening at an actual breast care center, not a general radiology place.

Should I not be saying that it is "cancer" since from my understanding it was cancer cells but they had not invaded outside the ducts??

Not sure what else to say it was since it was 10 cm of something in there.

What do you all tell people?

Is it okay to say "I had cancer????"

Or, what would one say, if not?

Beesie

Well, it's complicated.

DCIS is an "in situ" carcinoma. A DCIS cell is a cancer cell, but it is confined "in place" in the duct and therefore cannot metastasize. Many definitions of cancer include 3 criteria: 1) abnormal cells; 2) uncontrollable cell growth; and 3) the ability of the cells to move to a different location in the body and metastasize. DCIS meets the first 2 criteria, but not the third.

So some experts consider DCIS to be a cancer because the DCIS cell is a cancer cell. But other experts consider DCIS to be a pre-cancer rather than a cancer because DCIS cannot metastasize.

The AJCC staging manual - the American version of staging - includes DCIS as Stage 0 breast cancer. I can't access the full copy of the UICC staging manual - the European version of staging - but from the charts I've seen, while DCIS is discussed and presented identically to what's in the AJCC staging manual, they simply leave out any reference to Stage.

Here is how the American Cancer Society describes DCIS: https://www.cancer.org/cancer/breast-cancer/treatment/treatment-of-breast-cancer-by-stage/treatment-of-ductal-carcinoma-in-situ-dcis.html

"Ductal carcinoma in situ (DCIS) means the cells that line the milk ducts of the breast have become cancer, but they have not spread into surrounding breast tissue.

DCIS is considered non-invasive or pre-invasive breast cancer. DCIS can't spread outside the breast, but it still needs to be treated because it can sometimes go on to become invasive breast cancer (which can spread).

In most cases, a woman with DCIS can choose between breast-conserving surgery (BCS) and simple mastectomy. But sometimes a mastectomy might be a better option."

And this is from the National Cancer Institute: https://www.cancer.gov/publications/dictionaries/cancer-terms/def/ductal-carcinoma-in-situ

"A noninvasive condition in which abnormal cells are found in the lining of a breast duct. The abnormal cells have not spread outside the duct to other tissues in the breast. In some cases, ductal carcinoma in situ may become invasive cancer and spread to other tissues. At this time, there is no way to know which lesions could become invasive. Also called DCIS and intraductal breast carcinoma."

So technically, both answers are correct. DCIS is breast cancer, or DCIS is a pre-cancer. You can choose to call it whichever you prefer, and either way, you will be able to find breast cancer specialists and medical websites that will support what you. My preference has always been that 'DCIS is a pre-invasive cancer'.

What is not in dispute is that DCIS must be surgically removed in order to avoid the development of an invasive breast cancer. Well, maybe a tiny grade 1 DCIS can be watched, there isn't a doctor in the world who would say that a large amount of grade 2 or grade 3 DCIS could be safely left in the breast. What this means is that for those of us who have a large wide-spread area of DCIS (as I did as well), to get all the DCIS out often there is no choice but to have a mastectomy. It is a medically required treatment. That's true no matter how one chooses to define DCIS, as a cancer or as a pre-cancer, and that's what is true in your case.

KARW41

Wow, that is terrific information and detail, Beesie. I appreciate that you shared your knowledge and perspective in response to my question. I can tell you have thought about this a lot.

I am grateful and am keeping the information above as a reference, in case I need to try to explain it to anyone.

I guess it is okay to say it is cancer, and qualify it as pre-invasive cancer.

Beesie

Yup, it's okay to tell your Dad to stuff it and say that yes, you did have cancer. A diagnosis of DCIS is considered "malignant". And at least in North America, it is designated to be Stage 0 Breast Cancer. You can also tell him that you had the one mastectomy because it was medically necessary (not your choice!). Like you, I had a large amount of DCIS, but I also had a tiny microinvasion of IDC. The IDC could have been easily removed with a lumpectomy - it fact it was all gone after my excisional biopsy - but it was the DCIS that required me to have the MX, which I didn't want and would never have chosen for myself. With high grade DCIS just 1mm from my skin margin, if I'd had a localized recurrence (and 50% of DCIS recurrences are IDC not DCIS), it would have been caused by the DCIS and not the IDC. As for your contralateral breast, while that MX was your choice, does your father think you shouldn't be proactive about your health? Having had DCIS, your risk to be diagnosed with breast cancer again - either invasive or DCIS - would be approximately double that of the general population. Since your mother had BC 3 times, the same could very well have been in the cards for you.

Personally, after reading up on this and thinking about it, the reason I landed on the term "pre-invasive cancer" is because it doesn't just highlight the current state of having DCIS, being non-invasive, but it looks to the future possibility of the DCIS evolving into an invasive, and therefore potentially life-threatening cancer. "Non-invasive" can be interpreted as being benign, but "pre-invasive" more correctly references the serious potential implication and the reason why DCIS must be removed and treated.

The other thing I like about the term is that it is ambiguous and kind of skirts the issue as to whether DCIS should correctly be called a cancer or not. In saying that DCIS is a "pre-invasive cancer", it could mean that it is a "pre-invasive cancer", or it could mean that it is a "pre-invasive cancer". I usually like being precise in my terminology, but here the ambiguous term lets you sit in either camp and avoid arguments, although I can usually manage to get into arguments anyways.

KARW41

Thank you so much again, Beesie. I pasted the information you provided into the family GroupMe in parts as texts and I hope that helps him understand.

I think maybe it causes him to feel uncomfortable and the same for my brother, and maybe even my sister.

Yes, I would not have thought now to get a bilateral mastectomy either, although I am kind of relieved now, after 11 years of repeated call backs, biopsies, etc.

That is really something about the recurrence issue and DCIS. I did not know that.

I did both sides, since a surgeon from UCLA (who could not do the surgery until fall with the pandemic but who I consulted first) told me that if you only do one side, it can cause posture and balance issues and if I like to hike and exercise (hoping to do it more), then I should get a bilateral mastectomy.

After watching my mother suffer so much, I had somewhat toyed with prophylactic surgery, (after seeing Angeline Jolie's experience), but without BRCA genes, insurance would likely not have covered it sooner and so I would not have done it then.

I will follow your lead and try to remember to say "pre-invasive cancer." (I appreciate your distinctions very much on PRE or PRE-INVASIVE).

I feel like what I had was definitely a ticking time bomb (grade 2/3) with so much of it, and so I pushed to get it done despite the pandemic.

That is very precise and I'm thinking today about what you have said above in how to articulate and describe it to people if asked.

I'd rather talk about it, and not be secretive.

My own mother hid it from people and did not want to talk so much about it, as a more private person.