LCIS treatment

fiddlendaydream

Hello everyone,

I'm just curious as to what others have or have not received for treatment when being diagnosed with LCIS (I have LCIS in both breast, along with ADH and ALH and FEA) . I've had all areas of concern removed and I will see a high risk nurse at the end of August.

Also, any advice on what questions should I be prepared with when I meet with the nurse? I know it's a long way away but it will come fast and I want to be prepared.

Thank you for your help.

Denise

leaf

I have LCIS, ALH, DH (not ADH). Its the 'atypical' in ADH that significantly puts you at higher risk. I did antihormonals and do screening.

The usual choices for ALH/LCIS are

a) Screening, usually at least annual

b) Screening, usually at least annual, plus antihormonals

c) Prophylactic bilateral mastectomies - usually recommended for people who are at very high risk for other reasons, such as known BRCA-1 and/or BRCA-2 mutation positive, or a STRONG family history (such as most/all of your female blood relatives, especially first degree-mother, sister, daughter -had - especially premenopausal - breast cancer or ovarian cancer or male relative had breast cancer.) Some people have family histories that make it more difficult to estimate their risk for genetic mutations, such as they were adopted, or their father and mother had no sisters or siblings, or have a small family. Genetic testing is MUCH cheaper than it was say 10 or 20 years ago, and if you do choose to get genetic testing, I would highly recommend seeing a board-ceritified genetic counselor before testing.

LCIS and ALH are often in both breasts. They know this because before the ~1990s they normally did bilateral mastectomies on all LCIS patients, and they could do pathology on the mastectomy specimens. Usually LCIS and ALH are multifocal (meaning they occur in many different spots in a breast) and often bilateral (in both breasts.) They can't RELIABLY detect if/where you have ALH or LCIS without taking a tissue sample and put in under the microscope. LCIS is considered a 'nonobligate presursor', which means it puts people at higher risk for breast cancer, but, if you are one of the people that later goes on to get breast cancer or DCIS, the breast cancer or DCIS is often not AT the site of known LCIS, but at a spot that looked totally healthy under screening.

Just because you have LCIS AND ALH AND ADH, that does NOT mean your breast cancer risk is higher than someone who 'just' has LCIS alone.

Do your research. Look at both your heart and head (emotions and rational facts, such as they are.) There's no rush to make a decision, and at least for options a) and b), you can choose to switch to another choice sometime in the future. There is NO right choice for everyone.

You may get numbers as to your future risk of breast cancer, but, unless you are at VERY high risk or have a BRCA mutation, they really don't know those numbers well; there is a lot of uncertainty about that number, or range of numbers. Most numbers, at least for CLASSIC LCIS, suggest that Roughly less than half of women with LCIS will go on to get breast cancer in their lifetime. Note that even if you DO get breast cancer, that does NOT automatically mean you will die of breast cancer.

Whatever your choice, you will get support here. I guess I would not comment on someone who had LCIS and choose NOT to get any screening, even every other year, or mastectomy, unless they had some other dire medical condition where it wouldn't change their outcome if they got breast cancer, or were quite elderly so they would likely die of something else such as old age before they died of breast cancer.

Lea7777

What questions should I be prepared with when I meet with the nurse?

Some Questions and )))))Answers(((( from my one visit to the high risk breast clinic Nurse Practitioner. You might find some of these helpful. Don't take the answers I got about a year ago necessarily as gospel, but I wanted to share the answers I got and not just the questions I asked.

1.The 29-year Longitudinal Study on LCIS showed 2% chance per year, with a questionable plateau after 15 years. If I multiply 2% x 30 years, which is reasonable to think I'll live that long based on family history, do I have a 60% chance of breast cancer?

))))))Answer:Medication can reduce your risk by about half and 60% is higher than the #s the NP had of up to 35% lifetime ((((((((((((((((((((

2. Are the Tryer-Cuzick IBIS risk model results that were calculated for me with the genetic counselor reliable?

))))))))))))))) The answer from every source I spoke with, including the NP was no, they are way overstated ((((((((((((((((((

3.The stats I saw on short-term screenings showed little difference from annual screenings.

2.5 cancers per 1000 screenings for 3-8 months

2.3 cancers per 1000 screenings for 9-18 months.

The really disappointing # was 25% of cancers were late stage for 3-8 months screenings. 27% of cancers were late stage for 9-18 months screenings.

I would have expected the late stage percent to be very low if screening is done every 3-8 months because they'd be caught at an early stage. The 25% late stage is huge IMO.

From what I have found, whether MRIs or mammograms are used, these stats are not substantially different.

Do these #s seem about right?

))))))))))))))))))))))) The answer was that the interval cancers—the ones found between screenings—tend to be the deadlier ones because they develop more rapidly. The cancers most likely from LCIS, ALH, ADH tend NOT to be the fast developing deadlier ones.((((((((((((((((((

4. I see no data that AIs or SERMs (the endocrine drugs) reduce invasive breast cancer risk 25 or 30 years after the drugs are stopped. In fact now AIs are being recommended for 10, even 15 years, instead of 5 because their effects don't last.

))))))))))))))))))))))) 30 years is a long time out to determine effectiveness but the drugs do give protection after they are completed except for Evista/Raloxifene. However you can take Evista/Raloxifene for life, unlike the other drugs. ((((((((((((((((((

5. I cannot find longterm breast cancer survival rates.I called American Cancer Society and they don't have them either. Here is what I got:

Breast Cancer Facts & Figures 2013-2014 -From American Cancer Society

Survival of breast cancer patients to survival among people of the same age and race who have not been diagnosed with cancer.

89% after 5 years (Stages 1-2 are more like 100%)

83% after 10 years

78% after 15 years

Do you have any 25-30 year rates?

))))))))))))))Answer:Because the treatments and drugs improve a lot, 25 to 30 year survival rates are not meaningful because they are based on outdated treatment methods that are not as good as what we have today ((((((((((((((((((((((

6 If I wished to get MRIs every year, is insurance likely to cover that?

))))))))))))))))))) MRIs may soon come down to around $500, if you must pay out of pocket. They are $2000 - $5000 now. The gadolinium dye issues may mean annual MRIs over an extended time frame are not safe. She had not seen insurance problems in getting annual MRIs if the request for it is written properly. Sometimes it requires peer review (I think that was the term) with the insurance company.((((((((((((((((((((((

---I can't turn off the bold.--

7.Any big breakthroughs just around the corner?

)))))))))))))))))))) Answer: Liquid biopsies, less intrusive and painful than current methods (((((((((((((((((((((

8.I know PBMX has increased from 12% in 2000 to 18% in 2009 for women with LCIS. Do you have more recent figures? American Cancer Society does not have more recent figures than 2009. Why do you think there is such an increase?

)))))))))))Answer:These are mainly young women facing many years of risk who are choosing the surgery, not women your age (58) where surgery is not recommended. (((((((((((((((((((

Advice she gave, not in response to any question was (close to her exact words) "I always tell women with LCIS to do the enhanced screening for one year to see how they handle it and to see how they are feeling a year after their diagnosis.They can also try the drugs if they wish during this time. But don't do any surgery in the first year. There is no rush."

fiddlendaydream

Thank you, this is so helpful. I will have to read and reread it to process all you have told me. I want to make sure I make informed decisions, and I will absolutely at the very least get regular screenings. I'm not going to lie, the thought of taking medications with some of the side effects I've read about kind of scare me. But...I do want to make the best decision possible to avoid cancer in the future.

I will continue to read, do research and ask questions.

leaf

Thank you for sharing your experience.

Statistics are awful, even for people that understand statistics well, which I do not.

But I do know that sample size is important. Even the 29 year long paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4934644/ of about 1060 LCIS (and nothing worse) patients, they were looking at about 150 LCIS people who went on to get breast cancer. Many studies have many fewer patients in their groups, some as little as 10 or 15.

The other thing I might point out is that even these numbers, such as 2% per year, are based on a GROUP of LCIS women.

I (selfishly) am more interested in MY risk of breast cancer. Unfortunately, they don't know this number hardly at all, even for the 'average' woman in the USA. https://academic.oup.com/jnci/article/98/23/1673/2...

If you want a more up-to-date comment on different breast cancer risk models/risk factors, this is from Feb 2019, but not particularly about LCIS: Given that an AUC of 0.5 suggests that the test (or model in this case) performs no better than chance, the fact that none of the above models have an AUC greater than 0.76 leaves room for improvement [22,42,43]. (what an understatement!) (See table 1 in the reference below for a listing of models.) This means that if a model has an AUC of 0.5, half of the time the model will predict correctly, and half of the time it will predict incorrectly. This would be the ultimate useless model. A model with an AUC of 1 would ALWAYS predict correctly. A model with an AUC of 0.75 would predict correctly 75% of the time, and would predict incorrectly 25% of the time.

This paper looked at 6 specific mRNAs to predict breast cancer risk and got an AUC of almost 0.9. (Of course this study is NOT looking at the risk of LCIS women.) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC64025...

So, please know that even if you get estimates for your breast cancer risk, they do not know this number well, and your practitioner may not tell you they don't know that number well. I would guess that many health practitioners do not understand statistics well, due to the fact that I had 4 different consults with MDs before ANY of my health professionals brought up the fact they don't know that number well. It was my General Practitioner who told me that, not any of the breast surgeons, oncologists, nurse practitioners, or people at my NCI-rated tertiary care center.

Lea7777

"the thought of taking medications with some of the side effects I've read about kind of scare me."

You are in control of whether you wish to live with the side effects or not. If the SEs are not tolerable for Med 1, just stop. The SEs will cease once the medication is stopped, perhaps not right away, but usually within days or weeks, for some months. My experience was between a week and a month for the SEs to stop after I halted an endocrine BC risk reduction medication. If Med 1 is no good, on to Med 2 to see if it is more suitable for you. For post menopausal women there are basically 5 drugs to choose from in the US. In my case, 3 were completely unacceptable for different reasons and there is no way I could continue with them. But #4 has been ok. If none of them are tolerable, then at least you know you gave them all a shot and did all you could in that category.

If you decline the drugs and just do screenings, then you are following the advice I received from my radiologist friend. That's also the advice I got from the cardiologist who did my EKG when one of the endocrine BC risk reduction drugs mimicked heart attack symptoms and I went to ER, with an EKG followup at a later date. (no heart attack and no heart damage; the drug just caused chest/heart pain as one of the SEs, which was rare) I asked the cardiologist and he said he would not recommend any of the drugs to reduce breast cancer due to breast abnormalities like we have.

The predictive tools and their inadequacies that Leaf describes so well may some day improve to become more accurate in the future, which would give us more insight. There are other advances in the works too, such as a topical tamoxfen gel. Tamoxifen is one of the 5 drugs to reduce breast cancer risk, so this delivery model could alleviate side effects that we get when ingesting the drug. "Tamogel" has been studied since about 2004 but is not available for use at this time. Northwestern is doing some trials on it right now. I tried to get in on one but did not meet the criteria. Technology can improve screening methods even beyond what we have now. And research at the molecular level might provide a breakthrough. Check this out: https://www.eurekalert.org/pub_releases/2018-10/uo...

https then : then // and then www and then the dot and then eurekalert.org/pub_releases/2018-10/uoca-urd103018.php

So, something may come along that provides us more info and therefore more direction in what we should do. That's what I am hoping and will re-evaluate my position again 5 years out from the diagnosis. In the meantime, the trend at the breast forums and symposiums for breast care professionals is now "de-escalation." Fewer women getting chemo, less surgery, and less medication. The standard Tamoxifen dose has been 20 mg per day. Just this year a study came out that showed 5 mg per day to be almost equally effective with fewer side effects. Two breast surgeons and one oncologist I talked to felt that lower dosage would be appropriate for someone in our situation.

So that would be another question, hot off the press, to ask the nurse: What about the low dose 5 mg tamoxifen?