atypical lobular hyperplasia-tamoxifen
I was diagnosed with atypical lobular hyperplasia after core needle biopsy. had 2 subsequent excisional biopsies, which did not show anything unusal. Saw Oncologist today, he presented the Tamoxifen option. It seemed he was leaning in that direction but of course said it was up to me. With a family history it seems that increases my risk to 7 times the person without any risk factors...so i'm leaning toward taking it. Reduces risk of getting cancer in the future by 45-50 percent...I think I'm good with that. Worried about depression, weight gain. my husband suggests that I wait until I finish school until I start taking it. which will be in April.
Any thoughts?
Comments
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myshell----I was diagnosed with LCIS about 6.5 years ago and I also have family history of bc (mom had ILC); even with a much higher risk than you, my oncologist still left the decision to take tamoxifen up to me. During the years since my diagnosis however, I have noticed that most with LCIS are routinely now offered tamox, and now many with ADH/ALH are also. In my research, it appears they recommend tamox more strongly if there is a family history of bc. I took it for 5 years and had minimal SEs, mainly hot flashes, and now I continue with high risk surviellance of alternating mammos and MRIs every 6 months, breast exams on the opposite 6 months, and now take Evista (since I'm post menopausal now) for further preventative care. PM me if you'd like to talk more.
Anne
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Make sure you understand that:
a) The lifetime risk of an 'average' USA woman is about 12%.
b) The risk of a woman without any particular risk factors (besides being a woman) is about 3-5%. This means, without any additional risk factors, your risk would be about 20-30%, using your 7x figure. Other places use other numbers : the ACS uses 4-5 times which would be about 12-25%. http://www.cancer.org/docroot/CRI/content/CRI_2_4_2X_What_are_the_risk_factors_for_breast_cancer_5.asp
BRCA 1/2 carriers with a significant known mutation carry a risk of some 60-95% lifetime incidence of breast cancer.
I have LCIS, ALH, and a weak family history, and I have been given quotes from 'closer to 12%' (from a major institution) to about 30% (from my onc) to up to 90% (without tamoxifen) from a breast risk calculator that has NOT been compared to the appropriate populations, and is almost certainly NOT accurate for some groups. http://www.halls.md/breast/gailmods.htm Almost every paper I have read opines that LCIS has a higher risk than ALH, yet probably the 'average' risk that I've seen quoted for LCIS is about 30-40%. http://www.breastcancer.org/symptoms/types/lcis/cancer_risk.jsp
It is important that risk calculators compare their predicted numbers with the appropriate population. In other words, if you have ALH and started menstruating at age 15, and had your first child at age 35, then they should compare the figures they get for you with people who have those same risk factors (ALH, menstruating at age 15, first child at age 35.)
Additional risk factors are NOT necessarily additive. This means that if you have 2 risk factors, that does NOT automatically mean you can add your risks together to get the final result. In fact, for example, in alcoholism, it is known that alcohol is a risk factor, but when they studied women who drank AND had some other risk factors (I can't remember which ones), their risk did NOT rise.
There is also the issue that they can know a risk for a group quite well, but be very uncertain what an individual's risk is. One medical editorial called the Gail model risk assessment as 'better than the roll of a dice - but not by much.' http://jnci.oxfordjournals.org/cgi/content/full/98/23/1673
There is also the trick of percentages. If your risk is decreased by 50%, it makes a lot of difference what your baseline risk is. For example, if a treatment X has a 1 in 100 chance of having some unpleasant side effect but cuts your risk of the disease by 50%, and your risk for the disease is 0.5%, then 50% of 0.5% is 0.25%. That is a small absolute decrease in your risk. However, if your baseline risk for the disease is 40%, then treatment X,which halves your risk, will decrease your risk of the disease to 20%. Depending on what the unpleasant side effect is, you will have to decide if treatment X is for you.
I waited 6 months after my LCIS diagnosis to start tamoxifen. Part of this is because it took 3 months to get an initial appointment with my onc. But, assuming you had excisional biopsies, there is no huge rush to make a decision.
Another advantage to antihormonals is : If you decide you don't like them after you start taking them, you can stop.
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Just jumping in a bit late on this trail, but wanted to touch on the SE of tamoxifen from my personal experience...first off, I was diagnosed in 2004 with ADH in my right breast, have a very strong family history of BC, have a lifetime risk factor of 28%, am BRCA 1/2 negative, have MRIs and mammograms alternating every six months, had a preventative TAH/BSO hysterectomy in 2007, and was on tamoxifen for three years prior to my hysterectomy. It was only after my body stopped producing the boatloads of estrogen I was so richly blessed with that I was able to come off tamox.
For me the initial SE were leg cramps at bedtime, night sweats and hot flashes. After approximately 4-6 months the leg cramps subsided, followed by the night sweats. The hot flashes continued throughout the three years, but gradually decreased to the point I barely noticed them unless I was in a stressful situation. I did not gain weight while on tamoxifen, as a matter of fact, I lost weight.
Since 2004 I have had numerous biopsies and a total of three surgeries. Both my breasts are scarred, but still intact. Unfortunately after my MRI a day ago I got the dreaded phone call from my BS that there is "something suspicious" going on, so I am now scheduled for a mammogram, followed by an ultrasound and biopsy this coming Monday morning. They are moving fast, which I am grateful for. Although I have been through this a number of times, I still hold my breathe.
Anyway, taking tamoxifen is a personal decision for high-risk patients, IMHO. As leaf indicates, you can stop taking them if you don't like them. Please remember that the key to everything is being extremely diligent by doing self-exams, being aware of your body and listening to it, not missing appointments and check-ups, and being routinely tested on a regular basis. While the ADH was detected through a stereotactic core biopsy, my lumps were detected by self-exams every single time, including one that I did just one month after a routine mammo that never picked anything up. Proactive is the word.
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Ladies, just wanted to say, I have ALH, but before I discovered I had that, I was DX with Invasive dutual cancer on the opposite side. They only found the ALH because they routinely do an MRI when you are DX with cancer. So now it makes sense, ALH is a precursor to cancer, how do I know, because I have cancer! It can be a precursor to cancer in the same breast or other breast and what do I have, cancer in the other breast! Now I am further along than any one who just has a DX of AHL, but it shows a pattern. I would take the watch and monitor approach but in my case it's too late, right. There is a great article on it on Susan Love's website under Atypia and Hyperplasia. Best wishes! keep an eye on it!
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How is it that ALH or ADH shows up on a needle biopsy but not the surgical one? And who is that referred you all the oncologists. I had ADH on the needle biopsy, but not the surgical one and no one mentioned anything to me about seeing an oncologist.Thank goodness for this board that I now know to do so!
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I was dx with ADH 5 yrs ago in my left breast. I have a strong family history of breast (mother) and ovarian (aunt) cancers. My surgeon didn't refer me to an oncologist but he is very knowledgable about breast cancer and suggested that I consider taking tamox. I was 44 and didn't want the menopause SE and didn't take it. 18 months later right before my 46th birthday I was dx with ADH again but in my right breast. My surgeon didn't make the tamox optional. I started taking it on my 46th birthday and had all the SE's of hot flashes, night sweats, leg cramps. He also wanted me to consider preventative bilat mast. 6 months later I was diagnosed with DCIS in my right breast.
Run4urlife, The ALH or ADH that shows up on the needle biopsy but not the surgical biopsy may have been so small that the needle biopsy acually removed all of the abnormal cells. My last needle biopsy showed DCIS but my final path report didn't show DCIS but more ADH. That is how my surgeon explained the lack of DCIS cells in the final surgical path report.
Sheila
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Hi--I lurk here occasionally, and thought I'd share my experience with Tamoxifen. I had ALH too--excisional biopsy. Due to other risk factors, I have a 75% chance I won't get breask cancer. (I prefer to look at it that way rather than a 25% lifetime risk of getting it.)
I tried Tamoxifen, but was on Wellbutrin and the doctor didn't warn me that they interact. I went into a severe depression. Went off after about 4-6 weeks.
This has probably been mentioned elsewhere, but there is a genetic test to see how well you metabolize Tamoxifen. Some people get very little benefit from taking it. I was only an intermediate metabolizer.
Hope this helps!
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Hi myshell,
Four years ago, when I was 46, I had a lumpectomy in my right breast and the biopsy showed it was LCIS. I considered going on tamoxifen -- I have a strong family history breast cancer -- but chose not to. This past January, I was diagnosed with ILC, IDC and DCIS in my left breast -- had a partial mastectomy and will be following up with chemo, radiation and hormone therapy. I'm not saying that this would not have happened if I took the tamoxifen, but I do wonder sometimes.
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Hello,
After a biopsy in Nov 2009 I was diagnosed with ALH in my right breast. My onc. didnt want to do anything but regular 6 months check ups. I asked for a surgery and finally he did a segmental dissection on Jan 18. It took 6 weeks to get a result: ATYPICAL LOBULAR HYPERPLASIA, EXTENSIVE. I fInaly got the appointment and my doctor said: Tamoxifen 20 mg for 5 years as you have high risk to get BC.
I have to find gynecologist to do pretreatment evaluation ( I have regular gyn examin every year due in sept in my birth country in Europe,but I must have gyn in Montreal where I live).
I have no family history of BC and I am very concerned about side effects of Tamoxifen (stroke and uterial cancer etc) as for hot flashes,I will be 58 in few days. I went through menopause not having a single one, it is time now to experience that too.
Girls, do you have any adivce, suggestion, doubt etc?
Many thanks and Happy Easter to those who celebrate today!
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One nice thing about oral meds is that you can stop them if you don't like it after you start it.
Here is a website from the NCI that describes plusses and minuses of tamoxifen. It states that the increased incidence of stroke in tamoxifen users is about that of women taking hormone replacement. http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen
**If **this is of concern to you, and since you are postmenopausal, you may also consider taking another SERM.
There is little that is cut and dry in breast cancer, including with conditions that put you at higher risk such as with ALH. Almost all findings/opinions concerning ALH (and LCIS) are controversial.
'Extensive' may have an ambiguous meaning here. Extensive may mean 'extensively throughout the field of the microscope - in other words, the TINY (microscopic) sample that the pathologist looked at has ALH all over it', or extensive, as in each sample that was looked at had ALH. Even so, this may depend on the size of tissue they LOOKED at (not took) during your excision.
LN (lobular neoplasia) is often multifocal (in other words you have multiple spots of it) and bilateral (both breasts-although this is less common.) They know this because about 20 years ago, they routinely did bilateral mastectomies on LCIS patients. Over 50% of patients diagnosed with LN contain multiple foci in the ipsilateral breast and about 30% of cases will have further LCIS in the contralateral breast [12-14]. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC314428/
Since LN is usually an incidental finding, it is not possible to know exactly how much ALH you have without a mastectomy.
A higher risk of progression is attributed to LIN 3 (pleomorphic LN, extensive LN, and signet ring cell LN) compared to LIN 1 or LIN 2 http://www.ncbi.nlm.nih.gov/pubmed/16896673, but this is just one paper's opinion.
Since you have no family history of BC (and I assume of ovarian cancer), then I would assume you would be at low risk for a BRCA mutation. It is usually thought that BRCA puts one at higher risk of breast cancer (about 60-90% lifetime risk) than any of the atypias (including ALH and LCIS).
I have LCIS and ALH (and sclerosing adenoma) and a weak family history, and I have read papers that describe LCIS (which is more advanced than ALH) as moderate risk. http://caonline.amcancersoc.org/cgi/content/full/57/2/75
This Stanford site describes ALH risk as 'moderate'
- Moderately increased risk (4 to 5 times)
- Atypical ductal hyperplasia (no family history)
- Atypical lobular hyperplasia http://surgpathcriteria.stanford.edu/breast/alh/printable.html
- Moderately increased risk (4 to 5 times)
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milana---in the past, they generally just recommended yearly mammos and twice yearly breast exams for ALH/ADH; now it seems a lot of docs are also recommending tamoxifen, especially if you have other significiant risk factors. I have a much higher risk (diagnosed with LCIS--a step further along the bc spectrum with double the risk of ALH/ADH and family history of ILC), so tamox was basically a given for me. I took it for 5 years and now take evista, fortunately I tolerate both meds well with minimal SEs, mainly hot flashes, some mild insomnia and achiness. The risk of serious SEs (blood clots and endometrial ca) are very low, reportedly less than 1%--but be sure to get a yearly transvaginal US to monitor the uterine lining and the ovaries, and ask your physician about taking a daily baby aspirin (81 mg) to decrease the risk of blood clots.
Anne
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Thank you Leaf and awb!
Bellow is written on my path report and what they bolded i bolded too:
ANATOMICAL DIAGNOSIS:
RIGHT BREAST(SEGMENTAL MASTECTOMY WITH WIRE LOCALIZATION):
-ATYPICAL LOBULAR HYPERPLASIA, EXTENSIVE
-COLUMNAR CELL CHANGE ALSO INVOLVIN INCIPIENT SCLEROSING PAPILLOMA
-USUAL DUCT EPITHELIAL HYPERPLASIA
-SCLEROSING ADENOSIS ASSOCIATED WITH TINY MICROCALCIFICATIONS
-APOCRINE METAPLASIA
-CYSTIC CHANGE AND STROMAL FIBROSIS WITH FOCAL PSEUDOANGIOMATOUS STROMAL HYPERPLASIA
-PREVIOUS BIPSY SITE EXCISED
I must say that my doctor never went through this with me and my appointment lasted approx 5 min to tell me about Tamoxifen and that side effets are hot flashes and dryiness and that I have to see my gynocologist...
Not much, and this site together with google is my main source. I will try to get more infomation from gynocologist once I find one, and will go to my birth country to see oncologist ( and gynocologist again) in September. But till then I have to see gynocologist in Montreal and start Tamoxifen if I decide to take it. But, I will not start without a gynecologist exam. I really need to know what I am doing.
What do you think?
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It sounds like a plan, Milana. I didn't start tamoxifen for 6 months after diagnosis, because I went through genetic counseling, and then waiting to get an initial onc appointment (3 months).
Did your pathology report specify the size(s) of the sample(s) they received? In my report it was under 'gross description'. (They are not describing the samples as gross, they are just saying this is what the samples look like (size, color) under the naked eye, as opposed to under the microscope.)
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Pathologist got 14 specimen and for 3 she wrote there is a possible microcalcification and no ther lesion identified grossly. I dont know if I took the correct quote.
Any idea how to get my x-rays from the hospital to bring them to other oncologist outside the hospital? They will not like the explanation about second oppinion. What to tell them? That I travel to my home country and would like to show to my doctor at home? is it technically possible to get the copy of films?
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milana-----you have a right to a copy of your xrays---generally you just have to sign for them and return them when done; 2nd opinions are very common, so they shouldn't have any issue with it. I went on tamoxifen within a month of my excisional biopsy, my oncologist wrote me the script. Be sure to have a yearly TVUS to monitor the uterine lining and the ovaries--so within 12 months of starting the tamox.
Anne
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I went to see other doctor for a second oppinion yesterday.
She suggested Raloxigen instead of Tamoxifen as this drug gives less side effects than Tamoxifen( altough less protecion at te same time). She suggested this as I already have uterine myoma and Raloxifen would be a better solution.
Girls what do you think about this? I have gynecologist scheduled for June 2 and will have to decide what to do then.
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Here's an abstract. http://www.ncbi.nlm.nih.gov/pubmed/19105706
and the article article. There was no difference for invasive, and a *nonsignificant* difference for noninvasive.
There was no difference between the effect of tamoxifen and the effect of raloxifene on the incidence of invasive breast cancer; these results are shown in TABLES 1 and 2. There were 163 cases of invasive breast cancer in the women assigned to tamoxifen and 168 cases in those assigned to raloxifene [25]. The rate per 1000 was 4.30 in the tamoxifen group and 4.41 in the raloxifene group (RR: 1.02; 95% CI: 0.82–1.28)....<snip>
In contrast to the findings for invasive breast cancer, there were fewer noninvasive breast cancers in the tamoxifen group than in the raloxifene group, although this difference did not reach statistical significance (TABLES 3&4). There were 57 incident cases of noninvasive breast cancer among the women who took tamoxifen and 80 among the women who took raloxifene (rate for noninvasive breast cancer, 1.51 per 1000 women assigned to tamoxifen and 2.11 per 1000 women assigned to raloxifene [RR: 1.40; 95% CI: 0.98–2.02]). http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2785111/?tool=pubmed
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I was diagnoised with ALH in January and surgeon immediately sent me to oncologist. I had genetic counseling (several relative with bc-negative for BRCA, my risk is 40-50%). Oncologist wanted to start me on tamoxifen. Returned to surgeon for follow up and after she explained that I would have to have an MRI every year and probably more biopsies (I have had several) I began to rething the tamoxifen. I personally know a few ladies on it for bc and they hate the side effects. I have decided to have skin sparing masectomies - TOMORROW is the day. The surgeon is totally supportive - I just don't want to sit and wait until I have cancer. Insurance has approved surgery and plastic surgery - so wish me luck!!
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Anne,
My biopsy showed just a tiny amount of ALH. Maybe because of my high risk they wanted me on Tamoxifen? It kind of wasn't a choice either - that's why I chose surgery. For me the surgery was not half as bad as I expected. I stayed one night in the hospital, pain pills for 3 days, drains out after a week and felt really good. It's been 2 1/2 weeks and I feel really great - I am totally happy with my decision!!
Valerie
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i am sorry about your story !!! i hope everything is will be ok .....
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Anne1962,
No I don't have to take Tamoxifen - the surgery reduced my risk from 40% to less than 5%. I had nipple, skin sparing masectomies and had tissue expanders put in. So I go in once a week and have a "fill" until I get to the size I want and then they do an exchange and put in implants. I don't understand how come some are referred to an oncologist for ALH and some are not. My surgeon immediately sent me and he said that taking the Tamoxifen was the recommended treatment, it's not like he said I could chose whether to take it or not, he wanted me on it. Of course I could have declined. He wanted me on it for 5 years. It does reduce breast cancer risk, but I didn't want to deal with the side effects. Good luck. Maybe ask your surgeon.
Valerie
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Anne - had my second, wasn't too bad. Let me know what you find out after your doctor appointment.
Valerie
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Anne---generally, the recommendation for ADH /ALH is yearly mammo with breast exams every 6 months; sometimes with the addition of tamoxifen if there are other significant risk factors such as family history. Even with LCIS, which is the next step along the bc spectrum and double the risk of ALH/ADH, my oncologist still said taking tamoxifen was up to me. It really was a given for me, as I also have family history of bc (mom had ILC). Fortunately, I tolerated it pretty well for the 5 years and now I take evista for further preventative measures. I also do high risk surveillance of alternating MRIs with the mammos every 6 months due to the LCIS. Feel free to PM me if you'd like.
Anne
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Hi, hope you are all well.
After my surgery I went to see other oncologist for a second oppinion. She suggested Raloxivene(Evista ) as I have fibroids. I have seen gyn on June 2 and finally I started taking Evista four days ago, no hot flashes so far. Anyone knows when would hot flashes start, after how many days after I started?
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Its probably quite individual. I started having 'warm flashes' with tamoxifen about 1 month after I started. But I now have about 4 different conditions that can affect my temperature control. Your mileage may vary.
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Some people don't have any SEs at all from evista----I didn't notice any change in my SEs from tamox to evista---still have hot flashes, but I still had them even during the 4 months that I wasn't taking either medication, so gyn said I may be in the 10% of women that have hot flashes indefinitely! (OMG--I sure hope not)
anne
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awb, I hope you are not going to have them indefinitely!
So you were taking Tamoxifen for 5 years and then you got Evista?
Shouldn't it be 5 years one or another?
I am confused now....
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Leaf, thanks, I hope you are doing fine on Tamoxifen, hot flashes faded or still the same?
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Milana-----I decided to take evista (after finishing 5 years of tamox) for further preventative measures. It may seem like overkill, but all my doctors were for it (onc, gyn, pcp) and it is good for my osteopenia as well.
anne
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They faded. Due to other conditions, I'm much more likely to have problems with cold rather than warm. I'm starting my 5th year of tamoxifen, and have been officially in menopause the last year.
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