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newly diagnosed with ALH and seeking advice
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newly diagnosed with ALH and seeking advice

Hello,
I was diagnosed at an accredited breast center this week with scattered microcalifications that when biopsied (core needle) were said to be ALH. I met with a surgeon this morning who entered my data in a model and put my risk for bc at 30 percent now (my mother had bc, both ductal and lobular, in her 80s; I am 57). The next step is an MRI on Monday to ensure that when he does the anticipated excision he would not miss something more important. I have no fat in my breasts, which he said makes it difficult to get good information from a mammogram. He said my mammograms come out essentially "white." He said that I am at high risk for bc (despite breastfeeding and full-term pregnancies before age 30 and onset of menstruation at age 13 and menopause at 52 and healthy weight, etc.) and that going forward I should be tested every six months with MRI and mammogram, alternately. He also said an oncologist would later discuss prophylactic treatment with tamoxifen or evista (I have osteopenia, and he said evista can be beneficial for that). I am very frightened and anxious. Seventeen years ago I had a benign lump removed in the other breast. Two years ago I had emergency surgery for a retinal detachment and have only just now come to terms with my altered vision the various complications from the detachment.
Anyway, I am thinking I would like to get a second opinion about the breast situation. I believe I could do that at Mayo.
I have been out of the workforce for some time and am therefore rather isolated and am feeling pretty alone in this except for the support of my husband. I would welcome any suggestions about next steps. Thank you!
14 Comments
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587083_tn?1327123862
Hi,
Please don't be frightened....Atypical hyperplasia isn't cancer.It simply describes an increased accumulation of abnormal cells in a breast duct (atypical ductal hyperplasia) or lobule (atypical lobular hyperplasia).
Although this condition is not cancer,however it can be a forerunner to the development of breast cancer in the future,especially if you already have a family history of breast cancer and your risk,as stated by your doctor, is as high as 30%
Over the course of your lifetime, if the atypical hyperplasia cells keep dividing and become more abnormal, your condition may be reclassified as carcinoma in situ or noninvasive breast cancer.
For this reason, doctors recommend removing the area of concern.Once this is done,then frequent breast cancer screening and careful consideration of medications and other strategies to reduce breast cancer risk, are also recommended.
Your doctor is taking the proper steps dealing with your situation,but you can certainly seek a second or even a third opinion if you have any doubts at all on how to proceed.
Best wishes
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962875_tn?1314213636
Just wanted to say that I'm sorry you are having to go through this development, on top of the retinal/vision problems. You must be feeling as though your life--or at least your health--is  falling apart, and at a relatively young age!

But I hope zouzi's excellent answer will reassure you enough to lower the level of fear and anxiety you've been feeling.

And when you feel alone, keep in mind that we are here to provide you with both information and emotional support.

Warm regards to both you and your supportive husband,
bluebutterfly
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Avatar_n_tn
Thank you so much for your wise, well-reasoned and compassionate response. It did make me feel better and helps put my situation in perspective. I just never thought that what I read about in the news and other publications (I'm a medical information junkie) would someday apply to me! In all this I am super fortunate to live in an area with outstanding medical care.
With gratitude ...
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Avatar_n_tn
Hello Bluebutterfly,

I appreciated your welcoming and supportive response. I'm sure to have questions as things go along and am grateful to know where I can turn. Meanwhile I'll read some of the existing posts on topics such as MRI to get familiar with the territory I've now entered.
Thank you again.
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962875_tn?1314213636
So kind of you to acknowledge our replies! (Often we never know if someone has even read our answers...)

I have sent you a private message with a link to some good breast MRI info.

Best Wishes,
bluebutterfly
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Avatar_n_tn
I guess this is putting the cart before the horse, but as tamoxifen has been suggested as something I may be put on preventively given my risk for bc (I won't be seeing an oncologist to discuss this until after the tissue excision), I am concerned about some of this drug's risk factors, specifically, the heightened risk of deep venous thrombosis and pulmonary embolism. My mother, who had a mastectomy for breast cancer but no chemo or radiation, has had two scary bouts of pulmonary embolism (more than a decade apart) and one of deep vein thrombosis. Is it the oncologist who ultimately will evaluate all the pieces of my situation and make a recommendation?
Thank you.
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587083_tn?1327123862
Hi again and you welcome,
Yes, your Oncologist or Breast Surgeon are the ones who will evaluate you and make the recommendation about this drug.
Most Oncologists strongly advise patient to take Tamoxifen,while some others would let the patient diagnosed with ADH or ALH choose whether to take this drug or not, depending on their situation.
Tamoxifen, as any drug, does not come without risks.However, the benefits of this medication are much more prominent than their risk factors.
There have been studies demonstrating that tamoxifen can significantly reduce the risk of developing breast cancer by as much as 50%  in women who are at high risk.Obviously, this is also a personal decision, balancing risks against benefits.
If your Oncologist strongly recommends Tamoxifen and you are still not convinced ,you could seek a second opinion (preferably from a breast specialist) as it may help you to gather more information so that you can make the best decision for you.
Wishing you health and wellness...
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962875_tn?1314213636
Hi again,

In addition to all the good information zouzi provided, IF you are postmenopausal, there is a second drug, Evista, that has also been approved for prevention of invasive breast cancer. It  is also used to reduce the risk of spinal fractures related to osteoporosis, which is a plus for some women. (It was during studies of the use of Evista to treat osteoporosis that researchers noticed that among post-menopausal women who took the drug there was a lower rate of invasive breast cancer.)

In the STAR study,it was found that  tamoxifen appears to be superior to Evista  in primary prevention of invasive breast cancer, but it comes at the cost of higher toxicity. There was no significant difference in noninvasive breast cancer rates or in overall mortality rates, but the Evista  group had lower rates of invasive uterine cancer, thromboembolic events, and cataracts.  (Other studies say there is no difference.)

Both drugs carry risks, but can be very valuable in preventing BC in high-risk women (postmenpausal ones in the case of Evista). Based on your personal medical history (keep in mind that you well might not have the same risk for the side effects your mother experienced, take into account your healthly lifestyle and different body type), your PCP and oncologist can collaborate in  weighing  the benefits and risks of using  one of these drugs to lower your risk for breast cancer. Women with present or past blood clots in the eyes, lungs, or legs are cautioned about taking these drugs. One addional caution: women who are using selective serotonin reuptake inhibitors (SSRIs) such as paroxetine should be aware that their SSRI might attenuate tamoxifen's efficacy.

Regards,
bluebutterfly
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962875_tn?1314213636
p.s. I just noted that in your orignal post you mentioned that you had completed menopause and were aware of Evista and its potential benefits, but maybe my post above will at least provide a little additional information regarding factors that might go into the decsion about using one of these medications...

bb
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Avatar_n_tn
A related discussion, what questions to ask at diagnostic mammo was started.
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Avatar_n_tn
Hello,
I hope this is a continuation of my first post last summer (not sure how that works). Next week I am going for my first six-month "routine" diagnostic mammogram since having an excisional tissue biopsy (diagnosed with ALH) late last summer. What questions should I ask at the exam appointment? For starters, I'm thinking breast density. What else? I tend to go blank during these appointments because of the stress associated with them, so I'd like to be prepared with questions beforehand. I'm taking Evista preventively, by the way.
Thank you for any advice.
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587083_tn?1327123862
Thanks for adding your post on your original thread.
Japdip answered you and I fully agree with everything she said to you.
Best wishes ...

                                           ---------------------------

japdip16 hours ago
To: pinhole
I don't know that you will have an opportunity to ask too many questions except of the Technician that takes the films. A diagnostic Mammogram simple means that a Radiologist will be present in the institution at the time of your test .... so that he might "quick check" the films in order to see if additional views may be of some value or perhaps if an Ultrasound might also be of value. There might be views taken that weren't done when you had a screening Mammogram. This isn't like a Dr.s appointment ... just a more selective type of filming. Any discussion you have will be with your prescribing Physician when the report on the films has been delivered to his/her office. At that time you can schedule an appointment to discuss the results OR you may receive them over the phone.    Regards ...
                     -------------------------------------------------------

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962875_tn?1314213636
Just wanted to say "Hi" and that I hope your first follow-up mammo shows that all is well.

Regards,
bb

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Avatar_n_tn
Thank you, bluebutterfly. I think the radiologist on duty for these diagnostic tests at this center must be interventional, as last time, on the basis of the diagnostic mammogram, a needle biopsy was done immediately afterward. It was the unexpectedness of it and the speed at which it all happened that left me shell-shocked back then.
I appreciate your good wishes.
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Willis, MI