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nosurrender

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Reply with quote  #1 

Elective mastectomies on the rise

                                       

You can't get breast cancer if there's no breast. That's the logic behind elective or prophylactic mastectomy. Prior to the introduction of the procedure, mastectomies were performed on women already diagnosed with breast cancer. Within recent years, the number of breast cancer "previvors" has increased. Women are taking steps to beat cancer to the punch.

Carrying the mutated BRCA1 and BRCA2 genes, a family history of breast cancer or a previous bout with breast cancer can increase a woman's chances of getting breast cancer to 85 percent.

"Women faced with those odds may feel they're not going to take those chances," said Kathy-Ann Joseph, assistant professor of surgery at New York-Presbyterian/Columbia University Medical Center.

Most women undergoing the procedure are BRCA mutated gene carriers in their 20s or 30s. Some have already battled breast cancer or had a family member die from the disease. Having an elective mastectomy lessens the risk of developing breast cancer by 90 percent.

However, breast tissue can be found throughout the thoracic cavity, above the collarbone, in the armpits and in the abdomen. That still leaves a chance for breast cancer to develop.

When elective mastectomies were first performed, many surgeons thought it was wrong to remove healthy tissue and expose patients to risks of surgery, such as reactions to anesthesia or infection. But for a high-risk woman, the secondary health risks of surgery outweigh drug therapy that can induce menopause, the cost of frequent doctor visits, MRIs and mammograms, and the mental strain of possible cancer diagnosis. Although some insurance companies do not cover elective procedures, a case can be made for high-risk pre-cancer patients and the surgery may be covered.

Mastectomies are irreversible. Breast surgeons work closely with plastic surgeons to perform breast reconstructions. The reconstructed breasts will look like natural breasts under clothing, but depending on the procedure used, the breast may not look the same as before to the naked eye. Also, the reconstructed breast will not function as a normal breast, eliminating the ability to breast feed, and breast and nipple sensitivity can change.

Some patients may decide not to have breast reconstruction at all.

There is no set requirement for pre-op mental health care, but a patient should expect to undergo some counseling before a surgeon will agree to perform the procedure. Joseph said any patient who is planning to get a double elective mastectomy at New York Presbyterian/ Columbia University Medical Center must meet with a psychiatrist and receive counseling.


I found this article very interesting on many levels.

First, women should BE ABLE TO GET a prophy mast if they are high risk, have hyperplasia or lcis, dcis, etc. And those who want to get it because of the BRCA mutations. HOWEVER, no one should think the are getting a get out of jail free card. There is still breast tissue left over and as the article states, there is a 10 % chance of getting cancer in that left over tissue.

Another thing I was glad to see written for the first time is that they acknowledge that  your reconstructed breasts will look good in clothes but naked, well that is another story... my gyn and breast surgeon both tried to tell me this to prepare me but I didn't listen.

Which leads me to the last point, I wish I had some kind of counseling like that hospital requires beforehand to prepare myself for what was ahead.

I am glad my breasts were removed because of all the cancer in them. But damn, I miss the girls.


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lizws

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Reply with quote  #2 
Interesting article.  I was told (and knew) that there would be breast tissue remaining.  I chose the bilateral because of the lobular diagnosis.  If I had been diagnosed with ductal I would have done the same thing.

My plastic surgeon continuously told me that my breasts would not look anything like they did before AND this was not a type of augmentation/reduction.  I, like Gina, heard parts of it.  I'm not unhappy with the results except for the side that is a bit looser now since my weight loss.  I see my PS on Monday about that. 



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Karen1956

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Reply with quote  #3 
Gina - thank you for posting this article. Intersting. On some level, I do miss my boobs- but not for the looks. But I don't like my implants when I look at myself in the mirror naked. In clothes I look okay. Even with the bilat, I still worry about a re-occurance/mets. funny me saying that when I want to stop the AI's.
I really don't remember much of what BS and PS said about "boobs" prior to the surgery. I was so consumed with getting through this and getting rid of the cancer, that I never gave much thought to live without the original girls. I don't regret having the bilat for one minute - I had ILC and was stage 3, and the "good" boob was a ticking time bomb with atypical lobular hyperplasia, but I regret having had BC. I need to move on, and one day I guess I will. Karen
nosurrender

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Reply with quote  #4 
It really sounds like us lobular gals all think alike!

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cowgirl

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Reply with quote  #5 
This article made me furious.

 I will share my family in hopes that others out there know what can happen. First female dxed in my family was 48 with IDC, she had bilateral mast with recon, back when it was not done. She was one of the first to have it done, she was my maternal aunt. She had a reoccurance, yes you can have a reoccurance with any procedure. Because it only takes one cancer cell to make it happen. She was lucky, she felt it. At that time it was only DCIS I think, but she had to undergo all the chemo again.

Next my great aunt died of BC, yes she was older. But you have to wonder, she was my maternal great aunt. It was IDC that they could not seem to shrink. No BC on paternal side at all.

My mother did was was called the BCSP, the original double blind study on Breast Cancer treatment. She recieved 5 years of Tamox. During this time, her other sister developed DCIS. She chose bilateral mast with recon. My mom went off Tamox, and had two clear mammograms. She had a biopsy one time but they told her it was "just a calcification". After being off of Tamox two years she had a mammogram with IDC. Funny in the same place as the "just a calcification". She chose a simple mast with no recon. When talking to the oncologist I specifically asked. "why did Tamox not work completely?" He said that from our history it looked like Tamox kept the IDC from growing but did not kill the cells.

So when I developed DCIS at 46, two years after my mom what did I do? A bilateral with reconstruction. I believe the beast feeds on breast cells, it wants to rob women of thier lives. I also believe that no matter what I chose right for me, at the same time if someone else in my shoes chose lump and chemo it would right for them. Same oncologist told me he completely understood. That he would not give Tamox, since it did not work on my mom. I could have done other treatment, but I had no confidence it would be more affective than Tamox. Until my mom developed IDC, only one other BCSP patient on Tamox had developed BC in Temple, TX.

So I was tested for the BRAC, and guess what negative. So I was like, how can that be? Genetic doctor was very informative, I was negative for the BRAC that they knew about. There may be many genes out there that are BC and even Colon Cancer related we know nothing about.

I just think this guy got a lot of money to say exactly what he wanted to, he used stats not real stories.

See until you look at your family, your history, what can happen with any drug or surgery you really don't know. And this guy knows squat about my history. I am sure my aunt and my mom are in his stats, but after having taken Tamox for 5 years wouldn't you want aggresive treatment with IDC?

Okay I feel better, the only way to really feel good is to Boot kick this guy where the sun doesn't shine!

Gina thanks for letting me vent.

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Bren

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Reply with quote  #6 
Cowgirl,
I agree with you.  I am becoming more and more outraged by the "standard of care" dumped on all of us, including the willy nilly dispensing of Effexor as the cure-all for hotflashes and other SE's of AI's and Tamox.  Every single woman with breast cancer is 100% unique.  Her diagnosis is unique, as is her family history and her treatment should be unique to her as well.

All woman with er+ cancer are given AI or Tamox, even though the doc's don't know which women specifically will benefit from it.  All they know is that, for example, for women the age of 50 with Stage I, Grade II, IDC, node neg, ER/PR+, HR2-, out of 100 given Tomax, 12 will have a recurrence within 10 years.  They don't know which 12.  Without Tamox, 18 out of 100 will have a recurrence, again, they don't know which 18.  BRACA isn't the only gene that identifies bc.  It's the only one they've identified to date. 

Secondly, I have a huge problem with medical and radiation oncs prescribing psychotropic meds, such as Effexor, without knowing a patients thorough psychiatric or mental health history.  Many, many times it is contraindicated for depression.  Handing a medication out like that for hotflashes when not considering a patients total health history is a huge lapse in judgment, in my opinon. My rad onc prescribed it for me, without even looking at the other meds I take.  It was totally wrong and I had to tell him that.  There are other anti-depressant meds that work just as well. 

The good news for those of us who know how to research and self-advocate is that we can speak for ourselves and make sure the "standard of care" is individualized for our uniqueness. My heart goes out to those who are unable to research or question the "standard of care" thrown at them.  I read of these cases all the time on the BCO board, and it makes me want to scream at the doctors ... SHUT UP AND LISTEN ... I'M NOT A STANDARD OF CARE ... I'M ME!   
nosurrender

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Reply with quote  #7 
I believe that there are genes that have yet to be identified.
When my sister was diagnosed two years after me I found out that the "no cancer in my family" was a myth.
It started with my Great Aunt Virginia, who actually called me when I was first dx'd to tell me how sorry she was and that she couldn't imagine what it would be like to have BC.

Turns out she had it twenty years prior... so did three of her sisters! There were 13 in that family. There were three boys in that family who died of "stomach cancer" which could be considered Colon Cancer today.
Then there was a first cousin and her daughter- same side of the family- who had BC.

No one said anything because it was my father's side of the family and they "thought" it couldn't happen or there was too much taboo to talk about breast cancer or whatever.

I had the BRCA test and I tested positive for an "unknown variant" of BRCA 2 which means they don't know IF it caused the cancer or not. They also tested me for the colon cancer gene which was negative.

My sister finally agreed to get tested when I got my second dx and she tested negative- even for the unknown variant. So who is to say WHAT can happen??

As for Tamox- my docs believe in Femera over all of them. And not a single one has offered me Effexor or anything to ease ANY of my side effects. I guess when they hear all the drugs I am allergic to they don't dare try anything!!!


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cowgirl

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Reply with quote  #8 

I feel so much better knowing other women see this article and feel what I feel.


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RobinTn

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Reply with quote  #9 
Cowgirl!! there you are..how are you?? how is your shoulder?? I have thought about you alot.

Women can get a prof mast if they want the womens act of 1997 gives us that right and ins.co cant refuse.

The sugeron got all the breast tissue from my cancer side.the ps said i was scraped to the bone on that side.But he left a little flap of breast tissue on the right side.Now i have little stretch marks on the top of my expanded breast.At least they are mine.

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