Topic: Tamoxifen concerns - patient with Atypical Ductal Hyperplasia

Jan 27, 2009 07:30 AM, edited Jan 27, 2009 07:44 AM 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 www.mayoclinic.com/health/drug...

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.

 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

Jan 27, 2009 04:38 PM ailenroc wrote:

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

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

Jan 28, 2009 08:28 AM 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

Jan 28, 2009 05:04 PM 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

Feb 5, 2009 01:16 PM 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