Atypical Lobular hyperplasa

ginaf

How many women started with atypical lobular hyperplasa and got breast cancer ??

MelissaDallas

Gina, since this is a breast cancer board you won't get answers from all the women who have ALH and no further problems.  They don't hang around on the board for the most part.  You will mostly only get answers from women who are here because they have cancer. That gives you a very skewed response.

ballet12

I would add that probably many, many people harbor ALH and never even know about it.  I had ALH and ADH, and 17 years later was diagnosed with DCIS (and ADH again), so, it was probably the ADH path that took me to the DCIS (although my pathology report also said that DCIS extended into to the lobules).  It's unclear if the ADH/ALH from 17 years ago had anything to do with it at all. It was most likely all removed in an excisional biopsy back then. 

concernmom

High Ginaf, I was also dx with ALH in January.  I feel the same way you do..

Confused

LiveLaughBark

I am equally confused....all this ALH stuff came about as the result of a breast reduction that I wanted for ten years and finally got. I have no family history of any cancer whatsoever. I am concerned that I had mammos since age 28 (now 46) and nothing picked up anything but a recent breast cyst. I don't want to google too much but I want to ask the BS the right questions. Ugh.

leaf

Of course you are frightened and concerned how this will affect our lives.

In studies, they often group women with different proliferative disorders together. Its hard to find abstracts that list ALH cancer risks separately. Different studies differ. This study lists one of the higher risks for ALH that I've seen.

In this study, Of the 2,938 patients with atypical breast lesions, 1,658 were documented to have received no chemoprevention, and 184/1,658 (11.1 %) developed breast cancer at a mean follow-up of 68 months. Estimated 10-year cancer risks were 17.3 % with ADH, 20.7 % with ALH, 23.7 % with LCIS, and 26.0 % with severe ADH. In a subset of patients treated from 1999 on (the chemoprevention era), those who received no chemoprevention had an estimated 10-year breast cancer risk of 21.3 %, whereas those treated with chemoprevention had a 10-year risk of 7.5 % (p < 0.001). http://www.ncbi.nlm.nih.gov/pubmed/23117858(emphasis mine - I'm not trying to push chemoprevention, that is an individual choice.) This study is dealing with small numbers, because the 184 women who developed breast cancer are split among the women who had ADH, ALH, LCIS, severe ADH, or maybe a combination. Links to the original papers are not working for me at the moment.

This 2006 paper looking at ALH women who were diagnosed between 1950-1985 found

Forty-eight (19%) women developed invasive breast cancer at an average of 15.1 years. Twenty (42%) of the tumors were special subtype tumors with good prognosis. By an average of 13 years after invasive cancer diagnosis, 2 (10%) of 20 women with special type and variant tumors had died of breast cancer, compared with 9 (32%) of 28 women with tumors of no special type (24 tumors) or an unknown type (4 tumors). Only 1 patient with a tumor of low Nottingham grade died of breast cancer. http://www.ncbi.nlm.nih.gov/pubmed/16894523

Note that these women would have been diagnosed with an invasive cancer on average between 1965 and 2000. Since the approximate average age at ALH diagnosis is about 50 http://www.ncbi.nlm.nih.gov/pubmed/22578225,that means that for the 'average' women with ALH who goes on to get invasive breast cancer, they would get invasive breast cancer at the age of 65, then live another 13 years to age 73. Given the huge uncertainty in this data, and given the 'average' life expectancy in the USA for females is about 80 http://en.wikipedia.org/wiki/List_of_countries_by_life_expectancy, that is not that much different. Breast cancer treatment has improved since 1965 also, so these rough figures are just that: very rough.

There are other abstracts that may also give information, but the links to the original paper is not connecting at the moment, so there is more data out there: I don't have access to it (or the time.)

Note that studies look at the risk of breast cancer in groups. They do not look at the risk of individuals. The risk of individuals (i.e. answering the question, "What is my risk of breast cancer?") is a much more difficult question to answer - we don't know that answer hardly at all. http://jnci.oxfordjournals.org/content/98/23/1673.long

Its natural to be frightened by anything that threatens our health. All of us are mortal. Roughly half of us will die of something by the time we reach age 80 (in the USA). Most of the women with ALH will die of something other than breast cancer.

Jackiegray

good morning

Looking for some support (aren't we all though)

In June of 2012 I had a mammatome to remove clusters of micro calcification in both breasts. Pathology report says ALH in both breasts. Follow up with mammograms 2 times a year. 1st one totally clear. 2nd on done yesterday finds a cluster of micro calcifications in the right breast at the previous biopsy site. Scheduled for open excisional biopsy Monday with guide wire. I think I am most worried because In such a short period of time this cluster of microcalcifications developed. In my head this can not be a good thing! I'm scared of having surgery (I have lupus and healing is a major problem as well as diminished lung function and residual blood clots from a brain tumor surgery 7 years ago) I am 42. My mother had breast cancer at 53. I am trying to gather facts to ease my worries can anyone share their story?

cactus

Jackiegray, I'm so sorry you're dealing with the stress of an upcoming excisional biopsy. I'll have one later this month. My journey with ALH is too new for me to know how common it is for microcalcifications to develop at the site of a previous biopsy, but of course you're doing the absolute best thing you can...moving ahead with the procedure to give you some solid information. I know the waiting and wondering is very hard, and I'm glad you only have a few more days to go before the procedure.

With your history of other serious health problems, I'm sure you're proactive and involved in making your doctors aware of your concerns. You wouldn't be human if you weren't worried about all of this! I also gather facts to ease my own concern, and I've found this forum to be very helpful in that way. My only advice is to keep being honest with your doctors about any concerns you have with any procedure, and ask them to help you understand what steps they will take to keep you safe during your surgery.

I know some surgeons aren't known for being warm and fuzzy types, but that doesn't stop me from asking them for reassurance and explanations to help get me through the tough parts. You hang in there, and I'm sending you positive thoughts for a good outcome on Monday.

And yes, you're so right, everyone here is always happy for a little support! Hugs,

Jackiegray

pathology came back ALH, ADH and LCIS. BS recommending prophylactic bi lateral mastectomy. I can not take tamoxifen due to history of DVT in both legs. Going for 2nd opinion on Monday. The Gail risk assessment says lifetime risk is definite cancer diagnosis. So do I sit back and wait for breast cancer to form or be proactive and get rid of the liabilities?!? I am so torn!

georgie1112

Jackie,

That is such a difficult and personal decsion. After ILC and 7 yrs later to have LCIS and ALH, I sure didn't want to wait for more issues so had BMX. It is a better prognosis to operate before it turns invasive. Lobular can be very hard to detect. Take time and do research. Interview a few surgeons. Mastectomy is a big surgery and there are so many choices about reconstruction or not.

georgie

Anonymous

Jackie---first of all, the Gail Risk assessment can NOT be used with LCIS, so whatever #s you got from it are not completely accurate. And even with an LCIS diagnosis (the most serious of your 3 diagnoses), it is NOT definite that you will ever go on to get an invasive bc. It does however, increase your risk of invasive bc significantly in the future. Having said all that---I was diagnosed with LCIS over 10 years ago and my risk is further elevated by my mom's history of bc (ILC); I do high risk surveillance and preventative meds. It is a very personal decision, but I think if I couldn't take the preventative meds, I would've considered the PBMs much more and probably gone that route. See what the oncologist says, they should be able to give you a more accurate assessment of your true risk.

Anne

Stix

I think I would get a couple of opinions.

Martha615

First, I want to say to the original poster and all the other ladies with atypia lobular hyperplasia, that I am sorry that any dx turned up after a biopsy and that I can imagine their confusion as to what to do now. As another poster has pointed out, it is anyone's guess how many women are walking around with hyperlasia, and the number may surprise us. On the other hand, what bothers me is the atypia and the increased risk in cases of lobular hyperplasia due, in part to the difficulty in monitoring it, and also the slightly increased chance of a subsequent dx of cancer over, say, ductal hyperplasia. Unlike Leaf (oh, special thanks for that tremendous post, Leaf!) I have no expertise here other than to say that if I were in your shoes I'd be assembling a list of questions to bring to an oncologist, mostly about what my options were.

As Leaf has pointed out so well, while there is not way to prevent breast cancer, a great number of endocrine therapies have been shown to significantly decrease the onset of breast cancer. First on my list would be to ask the oncologist about tamoxifen if you are premenopausal.

You've already seen a very good analysis of the data of this kind of prevention from Leaf. I found an article in Medscape that might also help you. Again, I am not nearly as informed as many of the women on this forum, but it is worth noting the article in case it can be of value to you.

http://www.medscape.com/viewarticle/564535_1

The largest of these studies, the Breast Cancer Prevention Trial (NSABP P-1),^[33] compared tamoxifen to placebo in over 13,000 women with a Gail model score ≥ 1.66%. The study was halted early due to a 49% reduction of invasive breast cancer. More specifically, tamoxifen reduced the risk of breast cancer in LCIS patients by 56% and in atypical hyperplasia patients by 86%. It is interesting that tamoxifen preferentially decreased the incidence of estrogen receptor (ER)-positive tumors, a common finding of atypical hyperplasia and LCIS.^[61,62]

beacon800

hey Jacliegray, sorry you are facing the biopsy results along with the confounding issues of your health situation. Sounds like you are between a rock and a hard place,.

Tamoxifen is definitely not for you. I question the Gail model showing a definite future dx of invasive disease. Was not aware the Gail module was very effective for an lcis dx. However, all things considered, you certainly want to take a realistic look at all your options.

I can speak from experience that prophylactic bilateral mx , while a considerable surgery, is not as bad as all that. Though each experience is different, you can perhaps ask your doctors what they would recommend. I did not reconstruct, did not do sentinel node bx and the recovery was swift and painless. Obviously the prophy setting is the easiest surgery, but it's a hard choice. Offering you support here; I relate to your situation. I was sick with other issues ahead of surgery and it was scary,

Talk to your docs and know that you have options. Get a second opinion on your lifetime risk.

Jackiegray

I should have been more clear on the Gail model. When taking the LCIS out of the equation given all the other factors the lifetime risk is "inevitable".  None the less. Since my last post I did go for 2nd opinion and was ordered to have a MRI. which showed another area of suspicion. Long story short I'm going through with the PBMX January 3rd. I am so tired of crying over my faulty breast tissue. Every test comes back with more suspicious areas which means more biopsies. I've had all I can take. I'm worried about being in a lot of pain post MX... 

farmerlucy

Jackie - I know it is stressful waiting for surgery. It certainly is not an easy surgery but doable. You'll do fine. Are you having reconstruction? 

Jackiegray

yes I am having reconstruction.  Starting with TE at time of MX.  A lot of the nurses and doctors I have had tell me that the open biopsy I had (2 1/2" piece of breast tissue was removed) will have felt more painful than the MX. Having a hard time understanding how that is even possible.  

farmerlucy

I had a pain ball around my neck for 5 days at both surgeries, plus plenty of narcotics. By day three I was taking only Tylenol. The biggest issue for me was the pecs stretching, some ladies don't have much of an issue with that and if they do it settles out.  Ask for an order of physical therapy from your BS or PS. It helps immensely. If you haven't already join the January surgery ladies in the Surgery forum, they'll be going through the same thing at the same time.

You're going to do great - and guess what NO MORE MAMMOS! Woo hoo!. And the best thing is how you'll feel when you wake up and realize you outran the beast! That will make everything worth it. Contact me anytime if I can help. It is gonna be fine. Hugs.

Jackiegray

thanks so much farmerlucydaisy

What inspiring words. "Out running the beast". Love it!