How many ADH/ALH who had lumpectomy but still got cancer later?

Utahmom

Just curious to know how many of us diagnosed with ADH or ALH had the lumpectomy and/or additional meds to keep cancer away but got cancer even after the removal?

MelissaDallas

I think that is too many questions lumped together to give a single answer.

Only a small percentage take the prophylactic meds, but they reduce your chances back about 50%, often back to "normal" lifetime risk of about 13%

ADH and ALH are different and have different risk profiles, in that the lobular neoplasia tends to be diffuse and bilateral, so having one area excised doesn't mean there are not other areas of it still there because it is not usually seen on imaging. I think having the ADH excised is more likely to be getting "all of it" (at least what is there at the time.)

I have seen a handful of people here who talked about having only ALH, or ADH or LCIS at one time and being diagnosed years later with DCIS or invasive cancer, but I can't think who they are off the top of my head.

Utahmom

It was a loaded question for sure. I am interested in understanding the recurrence. I have ADH and also Mild Ductal Hyperplasia, both breasts. I have seen a lot of women on here with ADH that ended up either being diagnosed with excision or within five years that it seems to come back.

Trying to make some decisions and really value all of your opinions.

Thank you.

Ingerp

I had ALH 10 years ago (right breast). Then the DCIS (left) in 2016. Then IDC (right) in 2018. I had lumpectomies each time, but no ER+ until last year, so I'm only now on an AI. (Not sure what meds are given following ADH/ALH?)

Utahmom

They said after lumpectomy, they will do tamoxifen type drugs for 5 years no matter if there is no cancer. I really do not want to do drugs, if possible. I am really curious to see what other options there are for me. Have ADH associated with Calcs in one breast and have Mild Ductal Hyperplasia in the other from 2014. My husband actually wonders if that old diagnosis may have changed as well since I have new calcs in both breasts with the new ADH diagnosis.

momoschki

Well, for what it’s worth, I had a dx of ADH nearly nine years ago, and so far, so good. I have taken raloxifene (evista) for 5 years and have made some other changes as well. Just had my annual mammogram today, in fact, and all looked good

momoschki

Well, for what it's worth, I had a dx of ADH nearly nine years ago, and so far, so good. I have taken raloxifene (evista) for 5 years and have made some other changes as well. Just had my annual mammogram today, in fact, and all looked good

MelissaDallas

Utahmom, have you had your excision yet? Only about 20% of excisional biopsies get an "upgrade" on final pathology.

Moominmamma

I had calcifications, DCIS, and an area of ADH in 2007. Had lumpectomies for DCIS and ADH, and radiation of breast. No tamoxifen because of clotting history. In 2012 , in the area where ADH had been, found a lump, IDC and DCIS now Er-, PR-, HER2+, treated w mastectomy and chemo and Herceptin. Diagnosed in 2018 w diffuse bone metastases and cancer in underarm lymph glands strongly ER+, HER2-.

I often wonder about that area of ADH, and even whether radiation of breast was helpful given tumour changes. Did they bother with margins when pathology report said it was most likely ADH? What about one pathology report suggesting LCIS as well in tissue? Anyway here I am among the 12 percent to 20 percent (depending which bout you look at) who have recurrences 10 years out.

Utahmom

Great news, Momma!

Glad you are here

Utahmom

Mayo Clinic and Cancer.Org says that if we get ADH, we have a 4 to 5 fold increase of getting breast cancer over the general population.

If you figure that the general population has 12.4 % risk, that puts at 49.6% chance of getting it. Then, one study says that we are 30% more likely to get it. Really confused on how they come up with their numbers here. There is just so much information out there and we each have our own philosophies about what we believe and the doctors have theirs and big pharma has their input. Trying to make the best decisions for ourselves is sometimes very difficult. Anyone else agree with that?

Utahmom

Ms. Fabulous Texas,

I have not had my excision yet. They tried to set it up on the day that they gave me the results by saying, "The good news is that your biopsy are negative for cancer. The bad news is that you have Atypical Ductal Hyperplasia Associated with Calcifications." Me - "Okay, so you are saying I don't have cancer?" Breast Care Coordinator says, "I am saying you don't have cancer YET. We have to get this out before it becomes cancer." I told her I needed a couple days to do some reading before I have this out. I need to know what my options are. She said, "you have two. One is lumpectomy (excision) with 5 years of meds or prophylactic mastectomy." So, here I am with bag of benign and atypical crap in my breasts, my family history of cancers and trying to find my way for what is best for my little family.

LynnVB

I was diagnosed with ALH in 2016. Had an excision and refused meds, but do have increased screenings. Mammo/MRI every 6months. My oncologist supports my decision as I do not have any other risk factors.

I manintain my weight within the lower end for my height, workout, eat tons of veggies, fruits, etc. I guess my worst habit is wine. So far so good.

farmerlucy

Yep. Me. A friend of mine on these boards had LCIS, a preventive mx, and ILC was found. We are the lucky ones. Well maybe.

momoschki

Utahmom, my understanding of the 4-5 fold increased risk is in comparison to women with NO risk factors, so your nearly 50% estimate is way too high. In fact, I just consulted This week with a respected oncologist at a well known university teaching hospital in NYC and she pegged my risk (with an ADH dx) at the 20% range. So, with chemoprevention (Evista, in my case), which she said cuts risk in the neighborhood of 50%, that brings my risk down to the level of the “average” woman, which is a lifetime risk of around 12%.

There are other factors which may affect your risk: your age and menopausal status at dx, possibly family hx (there seems to be conflicting info on this variable), number of foci of ADH.

Keep in mind that while various risk predictors might do fairly well at predicting breast cancer occurrences for large groups of women, they are far less accurate at predicting outcomes for the individual. After nearly 9 years I have driven myself crazy reading research and trying to nail down exactly what my risk is, but have come to the conclusion that living with a certain degree of uncertainty is just inevitable (and I am very bad with uncertainty!). I think you just have to decide what measures you are willing to take to reduce that risk and then hope for the best.

Utahmom

Thank you ladies sp much for sharing what you have learned. I appreciate each of you. There is do much to learn and it seems like all the research is very fluid, changing all the time.

Utahmom

momocshki,

Thanks so much for your information. I met with genetic counselor at Cancer Center the other day and she said my risk was at least 30.9 without my aunts and 1st cousins and without blood work. It seems they are all over their place with their estimates and maybe research is changing all the time. She told me that you can test negative for all the genes attached to BC, but still get BC the next day. That is hard to wrap your mind around. I wonder if environmental things increase our risk and we just don't know it yet. Thanks heaps.

Utahmom

HOW MANY OF YOU HAVE HAD YOUR BREAST MRI?

This is brilliant discussion by a Doctor who is a Radiologist and MRI Specialist. The information that he provides is very valuable. I listened and watched as I did my laundry. The video is 1 hour long.

Take away: Mammogram is always necessary every year, but if you have BRCA or another gene mutation, dense breasts, fibrocystic changes, ADH or ALH, or have already had cancer, then you need one of these as a further diagnostic tool before you have your lumpectomy or surgery if possible. If not, then to see how your breasts are after treatment. The MRI screening is 30 minutes. It does use dye but it is different from the CTs. No nausea, No adverse affects.

You must use the "Short Board Flare" MRI machine. Do not use a different one. This is the most advanced.

https://www.youtube.com/watch?v=aiOyjqi23tA

LynnVB

Thank you for the video. I have ALH excised. I am on the 6 month screening schedule. I have had 3 MRI's since diagnosis. What I find interesting in the video is the doctor stated that in NC the MRI is covered by insurance...and that was back in 2006. I am in VA with a NC insurance company (BCBS)and I have yet to have it covered. Some of that is due to my deductible, but we still have to plan on 2,000 a year for the scan. I will be having another “firm" conversation with my surgeon next month to see if the order can be submitted differently.

MelissaDallas

As far as “no adverse affects” there is some question as to whether the contrast medium accumulates in your brain and other tissues and this is being studied. I am no longer doing an annual MRI unless there is some indication for it. NCI guidelines suggest annual mammogram alternating six months with clinical breast exam and “MRI may be considered” for follow up close monitoring for LCIS. I did have an MRI prior to my excisional biopsy and a couple later. I can also not afford to pay out of pocket for one every year

Utahmom

thank you, Ms. Texas.. Good thoughts on the dye. Since I have the benign Mild Ductal Hyperplasia in one breast with new calcifications and the ADH with new calcifications in the other, I would like to have an idea of what else if anything is in my breast. I have only had 2D mammogram because of my insurance. They tell.me that my breast are a 3 out of 4 on density.

MelissaDallas

Most women’ breasts are a 3 out of 4 on density unless they are very young or elderly. That is essentially “normal.”

Utahmom

the two radiologists that saw me argued whether they thought a 3 or a 4 on the screening. One said 3 and the other said 4, so I figured a 3. He pulled up my screening from age 41 and compared.it to age 52. It was the same density level.

Non.of my sisters have dense breasts.

They have beautiful fatty ones.

MelissaDallas

But apparently they were not too dense to identify a problem, thus your biopsy.

Utahmom

Yes, very grateful for that, but I could not have missed that cluster myself. It was nice and identifiable, even to the untrained eye.

MelissaDallas

But it clearly showed on imaging, as did mine

KayaRose

About 20 years I had ALH in my right breast. I had a surgical biopsy and the surgeon removed a lot of breast tissue (basically doing a lumpectomy). 5 years ago I was diagnosed with ILC in the left breast.

After the ALH, I was on a six month mammogram schedule for about 2 years. Then the insurance company said it was no longer necessary and I switched to annual mammograms. Back then there was nothing else to be done treatment-wise. I wish MRIs had been the norm. I had my annuals every year without fail. Yet from one year to the next my cancer went to stage III and was already in a lymph node. I have no doubt an MRI would have found it much sooner.

I'm glad to see that MRIs are now being considered necessary for those at high risk. They are so much better at finding lobular cancer than mammograms.

Utahmom

I met with the breast surgeon yesterday. He went over my history with hyperplasia in both breasts, my risk factors, family history, gene mutation, which is a rare type, VHL. However, it is the gene that is the tumor suppressant. It controls whether the cells stay normal or start to proliferate.

He went over options. Then, he said said he would support me if I chose a bilateral mastectomy in my case. He said that Hyperplasia in both both breasts has a real risk for not only the one with atypical hyperplasia but the other mild hyperplasia as well. I was surprised or naive to think that the other breast with usual hyperplasia was okay. Btw, I have new microcalcifications, some grouped, some scattered, multi focal in the "bad" breast and group in the "better" breast but they appear to be normal morphology. He said we only biopsied one area in the "bad" breast and he really needs to see the other area. So, that would be rather large area as one is OUQ and the other down low. He said he Hope's there is nothing there but he said I cannot just do lumpectomy without looking at that area as well. He said as far as we know, there is no cancer yet, but we need to be sure with more testing. He also said that my breasts according to reports and looking at the mammograms were extremely dense and that MRI is warranted before he does anything.

After he left the room, my husband said, I heard all that I needed to hear. I know what I think, but this is your body, what are you thinking?

We see the reconstruction surgeon today.

Feeling a little scared now. I was so brave before but to know that he was thinking in my case to go that route was the best for me was a little unnerving. Just praying nothing is hiding in there.

farmerlucy

Step by step Utahmom. Don’t go there unless and until you have to.

Tmh0921

IDC in 1999

ADH in 2016

ADH, ALH, and DCIS in 2018

IDC in 2019

Granted, this was all in the same breast and I had IDC first in 1999. My cancer team had warned me that the chances of a second primary and/or pre-cancerous findings after that first DX was about 30%. None of us were shocked at any of these findings because of my original DX at 27 years old

***Edited to add that had I known in 1999 that none of my mammograms would ever be normal, and I’d end up with biopsies after most of them, I’d have opted for BMX back then. 20 years of this has definitely impacted my mental well being. I wouldn’t necessarily push someone with ADH and/or ALH in that direction, but mental well being needs to be a consideration.

farmerlucy

I hear you on the screening Tmh. I did high risk for almost twenty years. In the end it wasn't the high risk clinic that lead me to investigate the issues, or the second opinion who said “you've done all you can I would just ignore it", then essentially patted me on the head saying “calm down you hysterical woman." It was the third opinion doctor who did a galactogram on the spot and spotted the papilloma that lead to biopsy and the ALH/ADH dx. Even that clinic passed on the spot seen on the MRI, the IDC buried in that extremely dense breast. A fact I did not discover until three years after the mastectomy. My point? You must be vigilant and be your own best advocate. Sticking w BCO is an excellent tool. If your breasts are busy they are likely up to no good.