I'm New, ALH and ADH What To Do

www2b, welcome to Breastcancer.org. Until you hear more about other members' experiences, the information about Getting a Second Opinion from the main Breastcancer.org site will give you much more about the where, when, who and what to expect of the process. 

Best wishes, and please let us know how it goes!

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There is controversy on how to handle different pre-cancerous/higher risk women.  Different doctors have different opinions.

Most, but not all, doctors recommend a breast excision after a core biopsy finds ALH or LCIS, because Roughly 20% of the time (there is quite a range between different papers) they find something worse (in other words DCIS or invasive breast cancer) when they excise around the area. Some papers opine that when the imaging and core biopsy are strictly concordant, you may not need breast excision. http://www.ncbi.nlm.nih.gov/pubmed/23132235 .Other papers suggest all ALH or LCIS found on core biopsy should be excised.

After classic LCIS was found on my first core biopsy, I was referred to a breast surgeon for a breast excision. The first words my breast surgeon said to me, as she entered the room, even before asking about my family history, was 'If you want prophylactic mastectomies, I'm going to sit down in a chair.'  After my breast excision showed nothing worse than classic LCIS, she said she did not want to do any further breast surgery on me.  Obviously, you are not going to have prophylactic mastectomies if a surgeon is not willing to do them.

I'm not saying that I would have chosen prophylactic mastectomies had I had that choice, but I would have liked to make that decision, not have it imposed upon me.  I did want to do something though, and chose tamoxifen.  I finished 5 years of tamoxifen in 2011. I have not had any other breast issues after 2006, when I had 2 benign breast biopsies. My main adverse effect of tamoxifen was multiple benign endometrial polyps, all of which were benign.

Other factors may play into your decision whether or not you want a prophylactic mastectomy.  For example, if you have a strong family history of breast cancer suggesting a deleterious BRCA mutation, then, in general that risk factor is quite a bit higher than ALH or LCIS.  (They consider my breast cancer risk history as rather weak, and I have 1 paternal grandmother, 2 maternal aunts, all with postmenopausal breast cancer, and 2 maternal cousins.)

You can ask your doctor to estimate your lifetime risk of breast cancer.  Different posters here have been given different numbers.  If you have a deleterious BRCA mutation, that might under some circumstances give you up to about a 95% lifetime chance of breast cancer. Other significant risk factors may be things like if you were ever given radiation treatment doses in your chest, such as for treatment of a lymphoma.   I was given an estimate of about a 30-40% lifetime chance of getting breast cancer for my classic LCIS.  In general, ALH is thought to have a lower risk than the 30-40%, maybe half of that.

But, one thing none of my doctors told me, was it is not only important to get your %risk, its also important to know how well they know that number.  In short, unless you have really significant risk factors, such as a deleterious BRCA mutation or chest radiation for lymphoma, or perhaps a really strong family history, they really don't know these numbers. Some people report they got risk factors down to 3 or 4 significant digits.  (These figures are generally obtained from risk factor models such as the modified Gail model.)

http://www.cancer.gov/bcrisktool/ 

But this paper jnci.oxfordjournals.org/content/98/23/1673.long  opines that our present breast risk factor models work great for large groups of women, but they work very poorly for individual women.  If you read the fine print, they will caution you about using these numbers for treatment decisions in individuals.  In the modified Gail model, even when they added in extra risk factors such as breast density, were correct about 60% of the time.  Unfortunately, they were wrong about 40% of the time.  (The toss of a coin would make these two outcomes 50% and 50%.) So the model was 'better than the toss of a coin, but not by much.'

That said, whether or not you prefer a prophylactic mastectomy is  a very individual decision.  Each person has a different level of anxiety, has different healing potential, has different risk factors, has different insurance, the presence of their breasts means different things to different people.  Some women get excellent surgical results, and some people get infections and poor surgical results.  Some people are more at risk for adverse effects of tamoxifen or antiestrogens.  Some people cannot stand the anxiety of 'watchful waiting'.

We will support your decision whatever decision you make. At least after a breast excision, there should be no huge rush to make a decision, unlike our sisters who have invasive breast cancer.   But I would hope that they look at the benefits and risks of each option with both their heart and their head.

I had the PBM and an invasive cancer was found in the final pathology. This is not that common. I've seen figures on these boards where about 20% of biopsies get upgraded in final pathology. The MRI picked up something that size the previous November, but as far as I know it was excised in the biopsy and found to be benign. I had extremely dense breasts, two excisional biopsies on the right, and a scary family history, and I knew my breasts did not image well. Find the best screening clinic you can and always be your own best advocate. I had three separate opinions on my nipple discharge.

deerich:  I have the same as you.  Now I had biopsy end of Feb and lumpectomy end of March, I was told I have ALH.  Now I am going back tomorrow, 3 months later to get my annual mammo for my right and my left that had surgery they will take pics of again too.  But if all fine then I will be seen only once a year as well.  Was your doctor a ob/gyn or breast surgeon??  I would trust what the breast surgeon is recommending.  Good luck to you!

deerich:  Yes I agree.  Good luck to you!

Mine went fine yesterday, still want me to follow up in 6 months though.  Guess rather be safe than sorry.

www2b - Congrats on a a successful surgery! I'm guessing TEs also. Those things can be TOUGH! You will feel so much better when you get the drains out. The decision you made is HUGE - when you are hurting hang onto the fact that you outran the beast! YAY!

I was not expecting the reconstruction to be as bad as it was. I know I had really strong pecs to start, and they didn't like stretching at all. It does get better. Ask you BS or PS about getting some PT. that helped me tremendously. It took my pecs until the exchange to loosen up, now I have no pain at all. I had fills totalling 350 cc and said that was good enough. Check in with the August surgery sister - they can be a great support! If I can help with anything let me know. Gentle hug.

www2b, just in case you haven't already seen it, there's a very active "September 2014 Surgery Sisters" topic. Lots of updates and experiences from this month's patients. I'm there as I had hoped/expected to have my surgery in Sept, but now it'll be Oct. Anyway, come on over and join, if you'd like. We'd love to have you. Or you could also just lurk quietly