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Topic: Tamoxifen concerns - patient with Atypical Ductal Hyperplasia

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Jan 26, 2009 05:57PM

JanW wrote:

I was recently diagnosed with Atypical Ductal Hyperplasia, the precursor to possible Breast Cancer.  I saw an oncologist last week who'd like to put me on Tamoxifen in an attempt to halt the progression of atypical cells.  And after reading the side affects of Tamoxifen, I'm a nervous wreck.  I'm wondering - should I wait to see if this turns into cancer before utilizing the Tamoxifen or should I be pro-active and start taking it now - even though the health concerns are definitely there.  I'm 46 years old and have 2 teen daughters.  I worry about not being here for them due to a blood clot to the brain or lung, or even endometrial cancer.  I realize there is nothing that anyone can do to change the risks of this drug, but any words of wisdom would certainly be appreciated. 

Thanks,

Jan

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Posts 1 - 9 (9 total)

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Jan 27, 2009 07:30AM, edited Jan 27, 2009 07:44AM by leaf

Hi there.  I don't have ADH, but I have LCIS and ALH.  I do have ductal hyperplasia, but its not atypical.

There is no one path that is right for everyone.  We are all individuals.  

Some women with ADH do like to get their slides re-read (if they weren't read at a Major Institution) because ADH can be confused with DCIS, and they are treated differently.

Have you been excised?  I think they normally like to do that.  (It is optional for ALH and LCIS in some circumstances.)  They often like to excise becase sometimes they find something worse in the area.

Yes, tamoxifen can have side effects.  But do realize there are VERY FEW medications where EVERYONE has a certain side effect. (I'm a pharmacist.)  I am not saying that tamoxifen is for everyone.

Different studies will have different numbers. I am not sure if you are worried about the most severe side effects,the possible stroke and endometrial carcinoma issues.

Here's what the Mayo clinic says about tamoxifen http://www.mayoclinic.com/health/drug-information/DR601293

It is an individual choice.  Part of it is emotional.  We do not know what the possibility of breast cancer means to you emotionally, and what the possibility of blood clots or endometrial cancer mean to you.  We don't know your family history, or your other personal risk factors for each condition.  They may influence your decision.

My oncologist says that cancer is like looking for something with a flashlight in a room with no light.  You can see part of the picture, but not the whole picture.  You are often given choices because there are unknowns.  

You do have the option of taking tamoxifen for a while, and if you don't like it, you can stop. Some people like that.  But others choose not to go on tamoxifen, or choose tamoxifen no matter what.  There is NO CORRECT choice - there is only the choice that is right for YOU - that only you can decide.

If you look at the antihormonal forum, you may get a distorted view - many people post when they do have problems with a medication, but are much less motivated to post when they have no problems with a medication.

I'm sure this chart won't come out properly,but it is from the Nolvadex package insert p 14 It is comparing the women who took tamoxifen in high risk situations vs the women who took placebo.  There's more to this, but its really hard to post.

Cases per year out of
Cases per year out of
1000 Women taking
1000 Women taking
NOLVADEX
Placebo
Breast Cancer
3.6
6.5
Endometrial Cancer*
2.3
0.9
Blood clot in the lungs
0.8
0.3
Blood clot in the veins
1.3
0.8
Stroke
1.4
1.0
Cataracts
25.4
22.5
Cataract surgery
46.6
31.4
*In women with a uterus.
Two European trials of NOLVADEX in women with a high risk of breast cancer were also conducted

 http://209.85.173.132/search?q=cache:_ctvFTRTavMJ:mesomorphosis.com/downloads/uspi-nolvadex.pdf+Nolvadex+%2B+package+insert&hl=en&ct=clnk&cd=1&gl=us&client=firefox-a

.5

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jan 27, 2009 12:34PM Beesie wrote:

Jan, do you have other risk factors in addition to the ADH?  If you don't, many doctors believe that the risk level that you have from ADH alone often may not be sufficient to warrant taking Tamoxifen.  Here's what the American Cancer Society says about ADH and Tamoxifen:

If you had atypical ductal hyperplasia (ADH) and are 35 or older: ADH by itself may not raise a woman's risk of getting breast cancer to the level where she might consider taking tamoxifen. But women who have had ADH and who also have other risk factors may have a risk that is high enough to consider taking tamoxifen. Talk to your doctor about all of your risk factors and how they affect your risk, so you can make an informed decision about whether or not to take tamoxifen.   http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Tamoxifen_and_Raloxifene_Questions_and_Answers_5.asp

Here is more information about the treatment of ADH and the impact of Tamoxifen from Dr. Susan Love:  http://www.dslrf.org/breastcancer/content.asp?L2=2&L3=8&SID=132&CID=441&PID=0

Taking Tamoxifen is certainly optional for someone with ADH.  My suggestion is that you ask your doctor to do a risk assessment for you - based on the fact that you have ADH, your age and other personal and family health factors, what is your risk to get breast cancer?  How much can this risk be reduced by taking Tamoxifen?  Then you can decide if this risk reduction is worth it for you.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage I, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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Jan 27, 2009 04:38PM ailenroc wrote:

please review the link: http://discoverysedge.mayo.edu/de08-4-gen-goetz/

Tamoxifen only works for 50% of women; the cyp2d6 test would help you determine if it would even work for you.

Oncotype score: 1; BRCA neg; bilat bc & bilat mx w recon;

Dx 5/30/2008, IDC, <1cm, Stage Ib, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Jan 28, 2009 07:48AM LizM wrote:

I was offered Tamoxifen when diagnosed with ADH and ALH a year before I was diagnosed with breast cancer.  I turned it down and chose close surveillance.  If you are not going to take  Tamoxifen I would at least ensure I had an MRI in addition to mammogram and ultrasound.  I say this because when I was diagnosed with breast cancer less than a year later it was 2 cm and I had one positive node.  I had very dense breasts and I suspect the cancer was there all along but imaging missed it.  Would Tamoxifen have made a difference for me the year before, I will never know. 

Dx 9/19/2005, IDC, 2cm, Stage II, Grade 1, 1/8 nodes, ER+/PR+, HER2-
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Jan 28, 2009 08:28AM lvtwoqlt wrote:

Jan, I have a mother who was dx with breast cancer in 2001 and didn't have the brca mutation, her sister passed away from ovarian cancer in 1978. I was dx with ADH in Jan 2005 on the left breast at age 44, my dr suggested I consider tamox because of the higher than average risk factors that included my family history of bc and oc. I declined taking it because of the side effects and chose close surveillance (6 month mammo/and follow up appt with my doctor). July 2006, I was dx with ADH in the right breast and my doctor insisted I take it. This was before the CYP2D6 test that determines if your body metabolizes the tamox efficently.  I put up with the hot flashes/night sweats and extreme mood swings for 6 months. In April 2008 I was dx with DCIS in the right breast. What I am trying to say is nobody knows who the tamox is going to work for to prevent the formations of the calcifications. I would only be second guessing myself that if I started taking the tamox in 2005 would I not have been dx with DCIS in 2007.

Sheila

Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006

Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodesSurgery 02/12/2005 Lumpectomy (Left)Surgery 09/10/2006 Lumpectomy (Right)Hormonal Therapy 10/12/2006 TamoxifenSurgery 06/01/2007 Mastectomy (Both)
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Jan 28, 2009 10:09AM robyn33 wrote:

Hi Jan,

Assuming that your body metabolizes tamoxifen (need a test to confirm), tamoxifen may be a good option.  I understand feeling very apprehensive of taking the drug when considering the possible side effects--I agonized over the decision for the six months that I was undergoing chemo and radiation due to stage III IDC.  Ultimately, I decided to give it a chance after I had the test to confirm that my body metabolizes the drug, and I've been taking tamoxifen for a month.  So far, I don't have any side effects that cause me a lot of discomfort or concern. Some women don't have side effects, but some women do.  The benefits for me far outweighed the potential for side effects as the hormonal therapy may reduce my risk of recurrence by abou 30% or so.  Good luck with your decision... 

Dx 5/13/2008, IDC, 2cm, Stage IIIa, Grade 2, 5/15 nodes, ER+/PR-, HER2+
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Jan 28, 2009 05:04PM awb wrote:

Jan--as Bessie said, you need to talk with your doctor and find out your overall risk of bc as well as your risks and benefits of taking a preventative medication such as tamoxifen. Some docs are now recommending tamox for ADH, but often it is because of additional risk factors such as family history. I was diagnosed with LCIS (a step further along the bc spectrum with double the risk of ADH) and I also have family history of bc, so tamox was very important in my situation, but even so my oncologist left the final decision up to me. I finished up my full 5 years of tamox about 3 months ago; fortunately I tolerated it pretty well overall.  There are risks of serious SEs such as blood clots and endometrial cancer, but those are reportedly very rare, occuring at less than 1% of the time. Tamox is generally well tolerated by most with the most common SE being hot flashes. I was also 46 with 2 teenagers at the time of my diagnosis. I wanted to be proactive in trying to prevent an invasive bc in my future. Thus far, I have done very well with no more biospies/lumpectomies needed and am very closely monitored with digital mammos and MRIs alternating every 6 months. My mom took tamox many years ago and also tolerated it very well; which factored into my decision---she is now a survivor of over 22 years without a recurrence. So, for us, tamox has worked very well. 

Anne

"I don't know what the future holds, but I know who holds the future"

Dx 9/5/2003, LCIS, Stage 0, 0/0 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jan 29, 2009 12:34AM, edited Jan 29, 2009 12:35AM by 62192

Jan - I know how you feel about the tomox. Last January I finally got up the courage to do a breast reduction surgery that I have been wanting to do for quite some time. Anyway 2 weeks later I got the pathology report back after they analyzed the tissue that they removed. It showed that I had LCIS and ALH in 1 breast. Thankfully after they decided to do more tests to see if it was anywhere else, it was not! I did go 2 different Oncologists and breast surgeon. Both Oncologist recommended that I take Tomox and the surgeon said he didn't think the benefits would outweigh the risks. I am 48 years old, with no bc history. I have 3 children who are 14, 12 and 8 years old so I can relate to how you feel about the drug. I do go and have a mammo every 6 months and see the Oncologists every 3 months for a check up. If I want I can have an ultrasound too but my breasts are not nearly as dense as they used to be because of all the tissue removed. I probably will have US next time though. I still think about going on the tomox from time to time, but I think knowing me like i do, I would be more of a wreck worrying about the SE. I know many people are on it all the time and do fine, I just think it is your individual decision.

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Feb 5, 2009 01:16PM wallace101 wrote:

Jan

I was diagnosed with multifocal atypical ductal hyperplasia in Sept. of 2005.  I read everything I could about Tamoxifen and it seemed crazy to take the risks.  While I was considering whether or not to take Tamoxifen my sister was diagnosed with stage 3 breast caner. ( she is cancer free now) . I went with her to her chemo treatments and soon realized that Tamoxifen was mild compared to chemo regime for breast cancer.  I started Tamoxifen in Jan 2006 and have been taking it since.   Initially I had pretty severe hot flashes but they have subsided. I also had quite a bit of nausea so I switched the pill to bedtime which helped but didn't completely get rid of it.  The only other side effect is fatigue but it is tolerable.  I stopped taking the Tamoxifen for a week just to see how I'd feel and what a difference. I have mammograms every 6 months and MRI annually.   Good luck with your decisin.      JW