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Topic: Bi-lat Mx for DCIS -anyone take tamox after?

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  • Posted on: Sep 21, 2009 08:46 am
NY
Joined: Nov 2008
Posts: 470
rubybuttons wrote:

Just curious how many DCIS ladies had a bilat mastectomy and still took tamox. Was told I did not need too but now I wonder if  should ask for it??


Diagnosis: 10/15/2008, DCIS, Stage 0, Grade 3, 0/10 nodes, ER+
Posts 1 - 13 (13 total)
KAR
TX
Joined: Apr 2009
Posts: 171
Sep 21, 2009 01:49 pm KAR wrote:

Hi I had bilateral 7/16 and was relieved to hear my Onc say tamox was not necessary with bilateral, only if I had done unilateral.  He told me there was a very small chance that some duct tissue was left behind.  No guarantees but sounds like not worth the trouble and possible side effects to me.  Im one that tends to have bad side effects from almost any drug though. 


Diagnosis: 4/6/2009, DCIS, 3cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2-
lvtwoqlt
FOOTHILLS OF, NC
Joined: May 2007
Posts: 4,533
Sep 21, 2009 02:22 pm lvtwoqlt wrote:

After my 2nd abnormal ADH biopsy I was put on tamox, 6 months later my diagnostic mammo showed suspicious spots for the 3rd time in 2 yrs, the biopsy showed DCIS and I opted for bilat mx and was taken off tamox since my chances of developing BC for a 2nd time was around 1% and tamox would reduce it to .5%, I couldn't see that it helped that much so I stopped taking it. I was glad to not have the side effects that I was having.

Sheila

We are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt
Diagnosis: 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes
LynnVA
Charlottesville, VA
Joined: Mar 2009
Posts: 143
Sep 21, 2009 02:27 pm LynnVA wrote:

I was told in a nutshell before surgery, no more breast tissue no further treatment for DCIS.  But after surgery could not produce clear margins it was recommended I have rads to treat the chest wall.

BL Mast w/ TE, Rads, waiting for exchange
Diagnosis: 3/6/2009, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR-
Beesie
Toronto
Joined: Jan 2006
Posts: 3,851
Sep 21, 2009 02:47 pm Beesie wrote:

If you had pure DCIS and had a bilateral, your risk of recurrence or a new breast cancer is likely only 1% - 2% (assuming acceptable margins)  Tamox could cut that in half, at most.  So the benefit would be 1% at most.

If you take Tamoxifen, if I recall from my examination of the clinical trial data, there is about a 50% - 60% chance that you will experience quality of life side effects such as hot flashes, vaginal discharge or bleeding or various other less common side effects.  There is also about a 1% - 3% chance of serious side effects, such as stroke, deep vein thrombosis, endometrial or uterine cancer.

That's why Tamoxifen usually isn't recommended for those who have DCIS who have a bilateral mastectomy. However for those who have DCIS but have lumpectomies, the benefit/risk equation changes, since there may be a greater (sometimes much greater) risk of recurrence so the benefit from Tamoxifen, in terms of reducing this risk, is greater.  Similarly, for those who have a bilateral but have invasive cancer, the benefit/risk equation also changes, since Tamoxifen is effective at reducing the risk of distant recurrence (i.e. mets). 

Dx 9/15/2005, DCIS 6cm+ Grade 3 w/ IDC microinvasion, Stage I, 0/3 nodes, ER+/PR-
samon
Joined: Aug 2005
Posts: 201
Sep 22, 2009 09:44 am samon wrote:

I have wondered the same thing.  I am four years out from bilateral mx for DCIS.  I was ER+/PR+ and my doctor told me I did not need tamox unless I just did the unilateral mx.   I was also wondering if anyone was required to remove their ovaries because of being ER+/PR+.  My doctor told me that after having the bilat mx that I did not need to do anything else.  I was 40 at my diagnosis.  I have been wondering about all this since I have hear of other people taking tamox and having their ovaries removed, but I didn't know if that was for other reasons or not. 

melissa1518…
Las Vegas, NV
Joined: Sep 2009
Posts: 130
Oct 1, 2009 11:04 pm melissa1518 wrote:  I have been dx'ed with DCIS since 9/10-am going for 2 more biopsies tomorrow- I told the surgeon the minute I met her that I just want them OFF-I am so encouraged that some others have had bilat mx with DCIS- I mean at 56 who sees me nude anymore? I can tell you 2 of us , me and the woman in the mirror- I have looked at the mx bras, prostetics etc. and they have changed since my mom was in this boat. Did your insurance pay for the bilat or how did it work.? I don't want more mammos, MRI's, bios-pathology reports- let's just get to it and let me get on with my life---esp. while my nodes are clean (and I am praying that they are clean under the microscope!)
Melissa
Diagnosis: 9/10/2009, DCIS, Stage 0, Grade 2, ER-/PR-, HER2-
lvtwoqlt
FOOTHILLS OF, NC
Joined: May 2007
Posts: 4,533
Oct 2, 2009 09:24 am lvtwoqlt wrote:

My insurance did pay for the bilat mast, they did however balk at the recon because my ps used AlloDerm in creating the pocket for the implants and they considered AlloDerm 'expermental' for breast reconstruction even though my plastic surgeon had used it for about 5 yrs prior to my surgery.

Good luck on your biopsies and upcoming surgery.

Sheila

We are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt
Diagnosis: 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes
CAROLMARIE4…
Staten Island, NY
Joined: Feb 2009
Posts: 134
Oct 2, 2009 04:49 pm CAROLMARIE427 wrote:

Same here-the insurance company was a bit iffy with the Alloderm, but my plastic surgeon wrote something that had them cover it. I had no problem with the insurance paying for my prophylactic side because I had one side that had DCIS and a strong family history. No tamoxifen for me. All I do is still see my plastic surgeon regularly, as I am still in the reconstruction process and my breast surgeon every three months. They usually don't recommend tamoxifen for bilateral and DCIS because the risks outweigh the benefits.


Diagnosis: 7/31/2008, DCIS, 1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+, HER2+
aquamarine
CA
Joined: Oct 2009
Posts: 17
Oct 6, 2009 12:15 am aquamarine wrote:

I have wondered the same thing for myself! My oncologist explained to me that hormone therapy would be usefull to protect my other breast. But since I had a bilateral mastectomy there isn't any breasts left to protect.The pathology report indicated clean margins.  No chemo and no hormone therapy, just surgery. So now I'm just waiting to be reconstructed. 

--Aquamarine ♥♥♥
Diagnosis: 9/1/2009, DCIS, 2cm, Stage I, Grade 3, 0/9 nodes
melissa1518…
Las Vegas, NV
Joined: Sep 2009
Posts: 130
Oct 6, 2009 08:16 am melissa1518 wrote:

oh-- finally I am just settling down to confusion and wait- more unanswered questions-more delays- more time-time-time

I swear if you ladies were not here I would have gone in the bathroom and preformed self-surgery- well ok maybe not, but this is not getting more clear from the medical  professionalsBUT from you experienced angels- thank you!

Melissa
Diagnosis: 9/10/2009, DCIS, Stage 0, Grade 2, ER-/PR-
melissa1518…
Las Vegas, NV
Joined: Sep 2009
Posts: 130
Nov 3, 2009 06:59 pm melissa1518 wrote:

Can anyone out there with more time under their belt remember when they started to feel normal after a bilat mast? Like my chest-I have these little fluffies- u know boobs that feel like they weigh about 20 pounds each......can anyone remember when that feeling let up? Or do you just get distracted and learn to live with it? No recon in my future, just an FYI

Melissa
Diagnosis: 9/10/2009, DCIS, <1cm, Stage 0, Grade 3, 0/7 nodes, ER-/PR-
Lovegolf
Savannah, GA
Joined: Apr 2009
Posts: 164
Nov 4, 2009 11:54 am Lovegolf wrote:

melissa

I had bilat mx 5/1....has left with "dog ears" I had skin under my arms and under the incision site that were in the way when I moved my arms..right one real bad.  So last week had PS fix.  He leveled out my chest so it is so bumpy and lipo under arm ect.  It feels so much better...sore but better.  I had no reconstruction.


Diagnosis: 4/20/2009, DCIS, 2cm, Grade 2, 0/2 nodes, ER+/PR-
melissa1518…
Las Vegas, NV
Joined: Sep 2009
Posts: 130
Nov 4, 2009 05:31 pm, edited Nov 4, 2009 05:33 PM by melissa1518 melissa1518 wrote:

thanks my surgery is just 2 weeks ago and my chest has been different side to side since I was unwrapped.The prosthetics woman thinks I will need two different sizes and I don't care about that but would like my chest to "feel (physically) well". I am glad the PS could help you.

Melissa
Diagnosis: 9/10/2009, DCIS, <1cm, Stage 0, Grade 3, 0/7 nodes, ER-/PR-

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