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Old 10-20-2012, 07:21 AM   #1
momof2minnies
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Red face Any women out there with DCIS with microinvasion and her 2 pos, node neg?

Recently diagnosed, I am 46, had 2nd lumpectomy this week margins were not clear the first time , waiting to hear about this time.

Was wondering if anyone could share their experience? If not clear then a mastectomy if clear was told tamoxifen x 5yrs, radiation and because microinvasion only herceptin not needed-risks outweigh benefits at this stage they say.

My SIL diagnosed this week as well-she is 37, DCIS no microinvasion

Any words of wisdom(experience) would be helpful

Linda
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Old 10-20-2012, 09:08 AM   #2
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Quote:
Originally Posted by momof2minnies View Post
Recently diagnosed, I am 46, had 2nd lumpectomy this week margins were not clear the first time , waiting to hear about this time.

Was wondering if anyone could share their experience? If not clear then a mastectomy if clear was told tamoxifen x 5yrs, radiation and because microinvasion only herceptin not needed-risks outweigh benefits at this stage they say.

My SIL diagnosed this week as well-she is 37, DCIS no microinvasion

Any words of wisdom(experience) would be helpful

Linda
I was recently diagnosed with DCIS, there is no micro invasion that I know of, but I am doing a mastectomy in 3 weeks so that could change. Oh im 42....
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Old 10-20-2012, 09:16 AM   #3
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There is a breast cancer thread on here. You might get more responses there.

Best wishes for a speedy recovery.
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Old 10-20-2012, 09:29 AM   #4
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OK, editing for the 3rd time because I think I finally understand.... read your title and I think I've got it - sorry!

In my experience, recovery from a mastectomy was not bad. Worst part was the chest drains I had for a couple weeks, and it did take a while for the muscles in my arm/chest to get back to normal. But not a lot of pain and discomfort. I was also node negative so did not have major lymph node removal which makes it a little easier I think. Tamoxifen hasn't been a problem for me so far, it takes a couple months for the side effects to level out so you have to give it a bit of time. It's not expensive since it's available in generic (cancer + inexpensive aren't typically used in the same sentence ). You will most likely be on tamoxifen whether you have a mastectomy or not.

Am surprised you may not be given Herceptin if you're Her2+ - I thought that was standard procedure? Her2+ is known as an aggressive cancer unfortunately. Maybe your tumor is on the low end of Her2 expression (not sure I"m wording that correctly). I am Her2+ and in my experience it's not something they mess around with, you're on Herceptin for a year. That said, the major side effect from it is that it can diminish the pumping ability of the left ventricle of your heart, but that goes away when you're off the drug. So every 3 months you go through a Mugascan or Echocardiogram to see how the heart's doing, and if the pumping efficiency goes down you take a break from Herceptin to let your heart recover.

Good luck and keep us posted.

Last edited by PlutoPony; 10-20-2012 at 09:44 AM. Reason: Initially replied before my 1st cup of coffee, reading is fundamental :)
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Old 10-21-2012, 08:02 AM   #5
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Quote:
Originally Posted by shinysparklybubbles View Post
There is a breast cancer thread on here. You might get more responses there.

Best wishes for a speedy recovery.
Thank you-could you point me in the right direction-can't seem to find it.

Linda
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4/08 First half marathon- Oleksak lumber- Ma., 2:23:35
10/08 Second half marathon-Applefest-Hollis,NH.,2:17:05
01/09 First full marathon- Disney-5:39:24
01/10 5K and Half marathon- with my brother- Disney-2:43:42
01/11 5k and Half marathon-Disney- 2:11:46
4/12 5k Castaway Cay on the Dream with Arynn
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Old 10-21-2012, 08:05 AM   #6
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Quote:
Originally Posted by PlutoPony View Post
OK, editing for the 3rd time because I think I finally understand.... read your title and I think I've got it - sorry!

In my experience, recovery from a mastectomy was not bad. Worst part was the chest drains I had for a couple weeks, and it did take a while for the muscles in my arm/chest to get back to normal. But not a lot of pain and discomfort. I was also node negative so did not have major lymph node removal which makes it a little easier I think. Tamoxifen hasn't been a problem for me so far, it takes a couple months for the side effects to level out so you have to give it a bit of time. It's not expensive since it's available in generic (cancer + inexpensive aren't typically used in the same sentence ). You will most likely be on tamoxifen whether you have a mastectomy or not.


Am surprised you may not be given Herceptin if you're Her2+ - I thought that was standard procedure? Her2+ is known as an aggressive cancer unfortunately. Maybe your tumor is on the low end of Her2 expression (not sure I"m wording that correctly). I am Her2+ and in my experience it's not something they mess around with, you're on Herceptin for a year. That said, the major side effect from it is that it can diminish the pumping ability of the left ventricle of your heart, but that goes away when you're off the drug. So every 3 months you go through a Mugascan or Echocardiogram to see how the heart's doing, and if the pumping efficiency goes down you take a break from Herceptin to let your heart recover.

Good luck and keep us posted.
Thanks- glad you are doing well. NCCN guidelines say no herceptin if you are microinvasive or < 5mm, but it does make me feel a little unsettled.

Linda
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2000 OKW First trip with the kids,2001 OKW First time for my parents,2002 Marriott Grande Vista/OKW,2003 MGV,2004 OKW,2005 March Disney cruise/SSR, July-MGV, 2007 CSR, 2008 Clearwater-day trip, Marathon 2009 OKW,Nov. 2009 CSR then the Magic,Marathon 2010 OKW,June 2010 AKL,Marathon 2011 OKW, Anniversary 2011 POFQ,Disney Dream+BC 2012,Disney Fantasy 2013,Anniversary 2013 POR, Jan 2014 OKW

4/08 First half marathon- Oleksak lumber- Ma., 2:23:35
10/08 Second half marathon-Applefest-Hollis,NH.,2:17:05
01/09 First full marathon- Disney-5:39:24
01/10 5K and Half marathon- with my brother- Disney-2:43:42
01/11 5k and Half marathon-Disney- 2:11:46
4/12 5k Castaway Cay on the Dream with Arynn
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Old 10-21-2012, 08:09 AM   #7
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Originally Posted by momof2minnies

Thank you-could you point me in the right direction-can't seem to find it.

Linda
I just bumped the thread I can't link it because I'm on my phone. I hope you see it.
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Old 10-21-2012, 08:29 AM   #8
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http://disboards.com/showthread.php?t=2833381

Link to the breast cancer thread.
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Old 10-21-2012, 08:44 AM   #9
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Originally Posted by momof2minnies View Post
Thanks- glad you are doing well. NCCN guidelines say no herceptin if you are microinvasive or < 5mm, but it does make me feel a little unsettled.

Linda
Got it, thanks. Didn't mean to doubt the guidance you're getting. The way it was explained to me (in dumbed down layman's terms) tumors are classified as Her2+, Her2++, and Her2+++ ..... +++ being the "strongest" (for lack of a better word) tumor. So you're probably in the + category and thus don't need Herceptin. Good for you! Bottom line is that they found your cancer early, and because of that your treatment isn't as involved which is great
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Old 10-21-2012, 01:17 PM   #10
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Quote:
Originally Posted by momof2minnies View Post
Recently diagnosed, I am 46, had 2nd lumpectomy this week margins were not clear the first time , waiting to hear about this time.

Was wondering if anyone could share their experience? If not clear then a mastectomy if clear was told tamoxifen x 5yrs, radiation and because microinvasion only herceptin not needed-risks outweigh benefits at this stage they say.

My SIL diagnosed this week as well-she is 37, DCIS no microinvasion

Any words of wisdom(experience) would be helpful

Linda
Hi Linda. First of all I want to give you a . I was diagnosed with DCIS last December and had a mastectomy in February. Coincidently, my SIL was also diagnosed with DCIS a week or two before my diagnosis. She had a lumpectomy followed by radiation. I agree with PlutoPony that the mastectomy was not as painful as one would think but the drains are rather a nuisance. The hardest part of this whole ordeal for me was just that it has disrupted my life for close to a year! I am lucky in that I didn't have radiation or chemo, just surgeries. I also am taking tamoxifen for five years. I started off fine with it but then was getting unbearable hot flashes / night sweats. In the middle of the night I was getting up and going outside to try to cool down so I wasn't getting a good nights sleep. When I saw the medical oncologist in September she gave me a prescription for another medicine (in addition to the tamoxifen) to help even out the hot flashes.

The breast cancer thread is a wonderful source of information. I was diagnosed a week or two before Christmas so I didn't want to tell my family until after the holidays. The women in that thread were my support during that time. One of them even has a medical background, as well as being a survivor so she is a wealth of information!

Hang tight. I know how upsetting it is to go through this but you will get through it. You and I live in a region of the country that has GREAT hospitals. We are lucky in that sense.
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Old 10-21-2012, 08:33 PM   #11
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mom of 2minnies, join us over on the GAGWTA thread if you can.

I was diagnosed with widespread DCIS, .1mm invasion in 2004. i guess that qualifies for micro invasion? Because the DCIS was in more than 1 quadrant, the surgeon suspected the nodes would be positive so he took a great number, but all were clear.

My only choice was the mastectomy. No more invasion was found in the breast tissue removed.

I was 50 and premenopausal, had 5 years of Tamoxifen, no chemo, no radiation.

Waited 2 years to do a free tram flap and reduction and lift to the unaffected breast.

No recurrence at year 8.

The mastectomy was not bad, the full node removal was the worst part, and the drains in for weeks was the worst issues. I have been fortunate to not have fully lymphedema from the node removal, only slight swelling. I am fairly careful with the arm where all the nodes were removed.

The tram flap was a much bigger deal, several days in the hospital and my husband tended to me 24/7 for 8 days. After that my mom helped me with what I needed. No pain on the new breast side, slight pain on the lift/reduction side. The issue is the stomach area where the tissue is removed. It hurt like the devil to get up for a few weeks. I have no regrets though-reconstruction gives you closure.

I recommend it after a mastectomy.

Hope you join us on the breast cancer thread. We have a good group of survivor posters, family members of survivors, and other friends who have posted there for a long time. Even more I hope you end up with clear margins on your second lumpectomy so you can avoid mastectomy/reconstruction if you choose it.

Good luck.
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