Risk of developing cancer?

Breathe_Now

Hello,

I'm new here.

A wire guided excisional biopsy was ordered and they happened to find the LCIS. And I was diagnosed with LCIS on 05/25/16. Prior to that a core needle biopsy found ALH and the surgeon said that I have a 22% chance of developing cancer.

What I don't understand is why the surgeon would say that my risk of developing cancer is still 22%. It doesn't make sense to me that the number didn't go up after finding a more advanced disease.

Can anyone explain this, or is maybe a second opinion in order?

Thank you for your help.

leaf

Yes I can. Its because the prediction of breast cancer is in its infancy. To quote Disraeli, 'there are lies, damn lies, and statistics.'

When I got diagnosed with LCIS (and ALH later), my oncologist gave me a number somewhere between 30-40%. I wanted to have a better number so I had a 2nd opinion at an NCI-certified tertiary hospital. The breast surgeon said 'Your risk is somewhere between 10% and 60%, but probably closer to 10% than 60%. If you want a better answer go to the literature.' I was especially surprised when I went to this breast cancer predictor which gave me up to a 88-90% lifetime figure if I didn't take tamoxifen. http://halls.md/breast/risk.htm. (In his defense he does say The methods used for combining extra relative risks are the standard approach, but the final calculated result cannot be compared to real data, which would require a 15-year study of a hundred thousand women, which is impossible.)

I was frustrated, because obviously you may do something different if your risk is 10% than if your risk is 90%. Obviously the lifetime risk of 'average' women in the USA is ~13%, so I was really puzzled how she could include a number for LCIS women that was LESS than the average woman.

I had looked at the literature. But it was only after I saw my GP who implied the case was much more complex than that.

I found this editorial in a medical journal. Yes, its from 2006, but I don't think the situation has changed much since then. http://jnci.oxfordjournals.org/content/98/23/1673....

In short, the editorial says that with the possible exception of BRCA, and maybe people who have had chest irradiation TREATMENT (such as for lymphoma), its very hard to tell the difference between a woman who will get breast cancer and one who will not. In the modified Gail model (which automatically excludes LCIS women), for the 'average' woman, when you ask the question 'What is my risk of breast cancer?', then about 50-60% of the time the modified Gail model was correct, which means that 40-50% of the time it was wrong. Remember an honest random coin toss gives heads 50% of the time and tails 50% of the time. So, as the article says, the model is 'better than a coin toss, but not by much.'

The Gail model is great at estimating how many people in a population will get breast cancer, but its rotten at estimating which particular women it will be. Note that the Gail model is looking at the Average Woman, with an average number of risk factors. LCIS is quite uncommon, and they have no idea how many people have LCIS and don't know it (because they haven't had breast biopsies), its Really Hard to estimate these numbers. If they have this much trouble in estimating the risk of the average individual woman in the USA, just imagine how well they know the risk of someone with ALH or LCIS or both.

So a doctor may give you a 2 or 3 significant figure risk, but they sure do NOT KNOW this number very well. Since LCIS is unusual, I can't imagine that any other breast cancer risk model does any better.

Its important to not only know your risk, but How Well They Know That Number. In the case of breast cancer, for an individual, unless you have Large Risk Factors such as BRCA or high dose irradiation, they don't know that number well at all.

Its hard to live with uncertainty, but we can't change the situation. Luckily, LCIS by itself is not life threatening. Since most LCIS women find they have LCIS in their 40s or 50s, the few studies there are don't go beyond about 20 or 30 years, and there's only a handful of people that have been tracked that long. Before about the 1990s, they used to routinely do bilateral mastectomies on all LCIS women, so the statistics are hard for that reason too.

Breathe_Now

Thank you for your comprehensive answer, Leaf. You pretty much confirmed what I was thinking.

There definitely worse diagnosises, but this one is certainly frustrating.

muska

Thank you, Leaf for a great LCIS summary you published above. I have nothing to add but my personal experience. My LCIS was only diagnosed after bilateral mastectomy. I have no family history of BC and am BRCA negative. If you look at my profile below you will notice LCIS was in both breasts (one was considered healthy and was removed at my request.) I think it is likely LCIS was a precursor of an invasive cancer and I probably had LCIS for a long time before I was diagnosed with DCIS/IDC.

Breathe_Now, I think you need to figure out how to be monitored in such a way that any progression be caught before it becomes invasive. It's easier said than done.

Breathe_Now

Thank you muska, I was just enrolled in a high risk surveillance program with clinical exams and imaging every six months (alternating tomosynthesis and MRI every six months) I have a referral to discuss options with and oncologist. Prior to the surgery I had both Tomo and and MRI so am somewhat confident that if anything were to develop it would be caught in time for early treatment.

I still pretty much feel my stomache roll over everytime I think about this and intermitantly get dizzy. (Before this I have never been so anxious that I get dizzy). They did not identify my ER/PR status at pathology, I am assuming that is because there was no discrete mass or lesion is identified. I don't know if I can do HT because of other health conditions and medications. The whole thing just makes me want to throw up.

Anonymous

Breathe now;

generally, the risk with ALH is thought to be about 20-25%, while it is 30-35% with LCIS. That, of course, can change (up or down) depending on whatever other risk factors you have. As Leaf said, the risk calculators are designed for large populations of people, not for individuals, so it is just an estimate of course. (actually with LCIS, a "guesstimate" as they really don't know for sure, My first oncologist actually admitted it was his "best guesstimate", when he gave me a risk level of 36.6%, but he used the Gail model which specifically says it can't be used with LCIS.). When I asked my 2nd oncologist what risk she gave me, she said "31-35%, somewhere in that range". (genetic counselor couldn't even give me an exact number). But I have family history of bc (mom had ILC) so the combination elevates it above just LCIS alone I was diagnosed back in 2003, so I've been dealing with this a long time now.. I had a lumpectomy, took tamoxifen for 5 years, now I take evista for further prevention, I still do high risk surveillance of alternating mammos (now 3-D tomosynthesis) and MRIs every 6 months and CBEs on the opposite 6 months. Fortunately, I tolerate both meds well , and have not needed any further biopsies or lumpectomies in all these years since my original diagnosis. (an added benefit from the tamox is that it decreases breast density, making imaging much easier.) I would just recommend a yearly transvaginal US to monitor both the ovaries and the uterine lining, if you go on tamox. feel free to ask any questions, we're here for support.

Anne

Breathe_Now

Thank you awb. I almost called to schedule the appointment with the oncologist, didn't though. Will try again tomorrow.