Atypical Lobular Hyperplasia

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Bluize
Veteran Member


Date Joined Mar 2005
Total Posts : 635
   Posted 3/28/2005 12:59 PM (GMT -7)   
So after a mammo, needle biopsy and a surgical biopsy, this is the confirmed Dx.  My doc is referring me to a risk specialist to determine if I need to go on Tamoxifen.  Does anyone have any experience with this drug. I heard about the side effects, one being menopause which I am not ready for. I don't even have kids yet.
 
Doc says it's not cancer but could be a marker for it down the road.  They will watch me closely.  This is a grey area with it being lobular and not ductal according to all of my docs.  Any info would be appreciated TIA!


Susan

Post Edited (Bluize) : 3/28/2005 1:09:10 PM (GMT-7)


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 3/28/2005 2:18 PM (GMT -7)   
Susan-
Hi and welcome! Glad your news was not malignant, but sorry you are now considered high risk.

How old are you? There are no guarantees that Tamoxifen will cause anything to happen....a lot depends on your age. My onc said that the closer one is to menopausal age, the more likely they may get pushed into early menopause.

I am finishing my last 3 months of it, starting it when I was 31. I have gained weight (a small price to pay if it kept me cancer free!), and have some dryness, other than that, no symptoms. My periods have been as regular as can be, no hot flashes, no other menopausal symptoms or any problems. Everyone will be different...for as easy as my experience has been, others will tell you that they had problems with mood or hotflashes. Only way to know is to try it...but don't believe it if anyone tells you for sure what will happen to you.
I would also suggest going for a 2nd opinion at a breast care clinic where they can have experts review the report and weigh in.

Good luck,
Lori


Bluize
Veteran Member


Date Joined Mar 2005
Total Posts : 635
   Posted 3/28/2005 2:25 PM (GMT -7)   

Thanks for the reply.  I just made the appt with the high risk doc and hopefully I will get some promising news.  Of course, if it will keep me cancer free that's the best option.  What was your diagnosis, may I ask?  I'm curious how they determine whether or not to recommend it to a patient. One of the docs said that you take it for 5 years.  Is that about right?  There's no right answer here I know, but I was not expecting to have a surgical biopsy on the results of my first mammo.  Yikes!  I just turned 38.

Thanks again for sharing your personal information with me.  None of my friends have even gone for a mammo yet.


Susan


Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 3/28/2005 2:56 PM (GMT -7)   
Susan-
Yes, 5 years is the standard. They say if you take it longer than that, it can actually be a negative influence. My diagnosis was invasive ductal carcinoma, which is garden variety breast cancer. For those with cancer, they look at whether the cancer has certain hormone receptors. 2/3 of cancers do, and those folks are able to take Tamoxifen to try and prevent or delay a recurrence.
I do not know much about its use or indication for a high risk person, but you will find a lot out there. SUsan Love has a good book with lots of information too. It would be wise to read and research a little before seeing the specialist, to be prepared with questions, I would also recommend taking a tape recorder just to be sure you get all the facts.

Lori


tking
Regular Member


Date Joined Sep 2004
Total Posts : 141
   Posted 3/28/2005 3:05 PM (GMT -7)   
I took Tamoxifen for 5 years.  It wasn't so bad.  I did gain weight and had hot flashes.  They gave me Effexor which helped the hot flashes tremendously.  I have not had a period since and really don't miss it a bit.  I was 38 when I was first diagnosed -it is a shock!!!  You take it for 5 years.  Now I am on Letrozole (Femara) which you also take for 5 years.  They have started giving this after you finish Tamoxifen.  Anything that helps fight cancer - we'll go for it!

Teresa King

Jeremiah 29:11 - "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

(NIV)


Bluize
Veteran Member


Date Joined Mar 2005
Total Posts : 635
   Posted 3/28/2005 3:11 PM (GMT -7)   
Lori,
 
Thanks again for the info. I will look into it. I will also let you know what the doc says.
Susan

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