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Old 10-29-2011, 09:35 AM   #301
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SG, I hope to have ten percent the courage and attitude when if I ever have to deal with the big C...

Btw, I "highly" recommend medicinal "herbs"...
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Old 10-29-2011, 12:25 PM   #302
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SG, I hope to have ten percent the courage and attitude when if I ever have to deal with the big C...

Btw, I "highly" recommend medicinal "herbs"...
Thank you, and...

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(49, married; DH 53. I am fully retired as of 2015 (well ok, I still work part-time but only because I love the job and have complete freedom to call off if I want to travel with hubby for work), DH hopes to fully retire 2018 when he turns 55 to access 401K penalty-free...although he may decide to do part-time consulting)
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Old 10-29-2011, 02:16 PM   #303
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SG,

My heart just fell when I read that you have to go through more surgery, let alone radiation treatments. It is like being kicked when you're down, except you seem able to find a way to get back up again. I will continue to pray and send good thoughts.

I continue to be impressed by your scientific explanations of exactly what is going on, and why.

Amethyst
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Old 10-30-2011, 05:29 AM   #304
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For legal reasons I cannot give any recommendations on the internet. Plus, I am not an oncologist. Instead, I am sending you my very best wishes for a prompt recovery. Take care, Simple Girl.
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So, what does this mean? Local doc's recommendations:

1) another MRI and mammo's of the reconstructed breasts (ouch!) to further assess the situation, see how much breast tissue remains, etc.

2) additional surgery to completely remove the areola on the L

3) radiation for BOTH breasts due to the close margins
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Old 10-30-2011, 09:40 AM   #305
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Wishing you a speedy recovery to this dishearting set back.
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Old 10-30-2011, 10:47 AM   #306
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Thank you for your candor about this personal, frightening, and painful subject. Your clear explanations about your decision-making process are something I will remember.

Wishing you a swift journey through this, and hoping for the best possible long-term outcome.
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Old 10-30-2011, 11:39 AM   #307
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Did I hear someone mention dancing?


I just can't help mahself.......

Sorry to hear of your setback but glad you found this now. You bear gave me my laugh for the day. All the best.
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Old 10-31-2011, 09:35 PM   #308
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Wow, I go away for the weekend and this happens! Simple Girl, you are truly amazing and we are all 100% behind you, willing you to beat this thing. Knowledge is power.
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Old 01-12-2012, 11:43 AM   #309
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Yep, it's been a LONG time. I keep thinking I'll update here, then something else comes up, and I think...I'll wait til I know more...and then I find out something else, and so on, and so on, etc., etc. So...I figured I'll just share what I've been through and know so far and you guys can tag along with me on the "unknowns".

OK, recap, since I can barely follow this mess, I know you all certainly will need a summary!:

9/20/11: had bilateral mastectomies with 1st stage reconstruction

10/11: 2nd opinion path showed cancer bilaterally (we thought right side was prophylactic going into surgery), with close margins bilaterally, positive margin L behind spared areola. Bilateral radiation recommended due to close margins. No signs of invasive cancer - all cancer staged 0 at this time (excellent prognosis)


11/10/11:
had repeat mammo's and MRI prior surgery to remove L areola. Mammo on R showed one remaining suspicious calcification. Surgeon feels cannot localize it at this time well enough to biopsy - will wait and reassess in 6 months (3rd opinion facility feels I should have this done ASAP - but need to heal from 2nd recon surgery so likely will do this end of Feb/March)


11/15/11:
had surgery to remove L areola due to positive margins. Pathology showed all clear afterwards.

12/23/11: 2nd stage reconstruction surgery...6 hour surgery - uggh! Rough at first, doing much better now.

1/9/12: 3rd opinion on bilateral radiation - most likely no on L, but they are staining more slides. Most likely no on R, but still awaiting final tumor board recommendation (they decided to do a tumor board on my case due to its complexity - so thankful).

1/10/12:
3rd opinion medical oncologist calls me. The tumor board did not like one small spot they saw on my slides on the left. They couldn't be sure, so they ordered more slides from my tissue block in Miami which they stained themselves (I didn't realize...not all of your tissue is looked at...initially they just take a random sample...can you believe that?).

Well, it came back as I actually had a small spot (3 mm) of invasive ductal cancer on the left side. This was stunning, shocking, completely shocking news. The oncologist reassured me that since it is small and my 3 nodes that were taken were clear, that my prognosis is still good. However, I have been moved up (or down, however you look at it) a stage (stage T1a, for those who care - it's still very early breast cancer with a good prognosis). I now will have to take a medicine called Tamoxifen for 5 years to reduce my risk of the cancer taking up residence somewhere else in my body. Scary, scary. She said although it is a very, very small risk, it is possible some cancer cells had escaped and gotten into my blood stream before mastectomy. Soooo, this is why I will take that medicine.

On to more crazy news...they are now obtaining the entire tissue block from Miami to look at. I suspect they are looking for more invasion and also are trying to get more tissue to test for certain factors and assess how aggressive this cancer is. I'm not sure if this is what they are doing, but I think so based upon my reading. I think they are trying to determine if I need chemo or not.

All I know is I now feel in extremely good hands and and SO unbelievably thankful I went for a 3rd opinion. They found something I wasn't looking for...but...my gosh - I want every fighting chance to beat this! I can't believe I've been walking around unprotected for 4 months already. It's pitiful, disgusting...I'm ANGRY. But the biggest thing I feel is thankfulness that I even found out and now can treat it appropriately.

So...we wait...again!
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Old 01-12-2012, 12:04 PM   #310
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How upsetting this must be, SG! I'm glad you went for that 3rd opinion, too.

Sounds like with the new treatment all will be well, but gee, one would think they would look at all the tissue the first time.

Take care and know that all of us here are behind you as you battle this.
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Old 01-12-2012, 12:07 PM   #311
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Sounds like with the new treatment all will be well, but gee, one would think they would look at all the tissue the first time.
I know!!! I just don't understand it, when obviously it can lead to misdiagnosis and an incomplete treatment plan.
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Old 01-12-2012, 12:15 PM   #312
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I hope the important thing is that the surgeries took care of the cancer and the tamoxifen will act only as a "just in case" backup, SG. Thank goodness for the second and third opinions and the close look at more of the tissue.

Hang in there. Are you back to dancing a little bit?
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Old 01-12-2012, 12:15 PM   #313
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Glad you got the 3rd opinion as well. At least you can move forward with the appropriate treatment. Taking Tamoxifen won't be a big deal. I believe that is pretty standard. I know my mother took it. Hopefully chemo won't be needed, but I know you can meet it head on if you do have to go that route.

Best of luck!
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Old 01-12-2012, 12:21 PM   #314
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I hope the important thing is that the surgeries took care of the cancer and the tamoxifen will act only as a "just in case" backup, SG. Thank goodness for the second and third opinions and the close look at more of the tissue.

Hang in there. Are you back to dancing a little bit?
I was for a few weeks before my last surgery. I am still recovering, but hope to be back on the dance floor in a few more weeks!
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simple girl
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(49, married; DH 53. I am fully retired as of 2015 (well ok, I still work part-time but only because I love the job and have complete freedom to call off if I want to travel with hubby for work), DH hopes to fully retire 2018 when he turns 55 to access 401K penalty-free...although he may decide to do part-time consulting)
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Old 01-12-2012, 12:24 PM   #315
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Glad you got the 3rd opinion as well. At least you can move forward with the appropriate treatment. Taking Tamoxifen won't be a big deal. I believe that is pretty standard. I know my mother took it. Hopefully chemo won't be needed, but I know you can meet it head on if you do have to go that route.

Best of luck!

Thanks Dawg! Yep, Tamoxifen is very common and typically tolerated well, so I am not upset about having to take it. There are some side effects/concerns, but the oncologist feels they are worth the risk in my case.
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Old 01-12-2012, 12:27 PM   #316
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My first reaction to your post was I wanted to get my can of whoopass out and do some damage.

But after I cooled my boot heels, I realized how proud I am of you for taking control of your situation.

Stand firm sg and continue to do what it takes to get well.
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Old 01-12-2012, 12:32 PM   #317
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My first reaction to your post was I wanted to get my can of whoopass out and do some damage.

But after I cooled my boot heels, I realized how proud I am of you for taking control of your situation.

Stand firm sg and continue to do what it takes to get well.
LOL!!! Thank you!

I'm glad I listened to that little inner voice that told me push forward!
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Old 01-12-2012, 12:33 PM   #318
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LOL!!! Thank you!

I'm glad I listened to that little inner voice that told me push forward!
So are the rest of us
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Old 01-12-2012, 12:41 PM   #319
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SuperGirl, you're giving that cape of yours a real workout! Proud of you for your efforts in avoiding the Kryptonite. Keep up the good work!
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Old 01-12-2012, 12:51 PM   #320
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SG - best wishes as you recover...

I, through my mother, have been dealing with breast cancer for 24 years, but she is alive and doing well at age 74, so your prognosis is very good!

My mother first had bc at age 48 (when I was 18, 24 years ago). One breast, I don't remember what stage, but I know they found it early. She had a masectomy (single), and took Tamoxifen for 5 years, with no side affects. She got cancer in the other breast in her early sixties, had that one removed, same thing, healthy for years. A few months ago, she was diagnosed with cancer in her hip, but it was "related" to the former breast cancers. No surgery, just a few weeks of radiation, and they say she is cancer-free again. At 74, she and my dad were able to leave for their normal 3 months in Florida as scheduled, and although she is still a little tired, she is out there playing golf, etc, just as always.

She has the upbeat, take charge attitude that you have; so I have no doubts you will thrive when this is all over! She jokes (somewhat morbidly, in my opinion) that the next time she gets cancer, she'll already be dead from something else.
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