Views on Prophylactic Mast

[BonnieR]

Liz, first of all, I love your photo! What are their names?
Anyway, I opted for the proph. mast from the beginning. When I was told the second breast was "suspicious" and I would need to have more biopsies, constant follow up, etc. I felt that I would be always be "waiting for the other shoe to drop". And did not want all the angst. My surgeon is usually more conservative but agreed that it was an acceptable choice. In addition, my case was presented to two different tumor boards and those gatherings agreed with the decision so I felt good about it. I have not regretted it. I am not having reconstruction but I am older, too, so that factored into the decision. I just didn't want further surgery.
If you are so inclined, you might say a prayer for guidance. The right answer will come to you. Keep the faith. And keep us posted.

[Yorkiegirl]

Liz I had my mastectomy done on right breast in April 2005. Then In December 2005 a mammogram showed increased calcifications in my left breast. Knowing this was how it all started I opted to have to my left breast prophylatic removed in january 2006. For me this was the best decision for me.
I have also opted to not have reconstruction.

[Jackie07]

When I had my first breast cancer surgery in 2003, I told the surgeon I would prefer to have a mastectomy because based on what I had read from research articles back then, lumpectomy had a 50% recurrence rate. The surgeon assured me that lumpectomy plus radiation has the same result as mastectomy. So I had lumpectomy, 18 weeks of chemo, and 33 round of radiation. My cancer did come back - because she did not cut off enough of it. A chunk of the tumor was left out and for 4 years they called it scar tissue - even when I had been feeling sick and tired for at least 4 months and went for a mammagram. But the surgeon knew it was not scar tissue - as the technician had proclaimed after the x-ray. So I had a mastectomy - and this time I asked for bilateral because I would never know when I would have good insurance again. I got lucky to have found another teaching job, but now I am told they are not going to renew my contract. Is it related to the cancer treatment? You bet ya! But am I going to be able to prove it? Fight in the court? Not a chance. I am just glad that I had gotten as much of the potential problem taken care of at this point. With two brain surgeries and two breast cancer surgeries, it is going to be a long, long time before I can get another full-time job with benefit.

[Cynthia]

Yes, the Washington Post did write an article about how terrible it is that so many women are hysterically and needlessly opting for bilateral mastectomies. It made me nuts, as so many articles in the Washington Post do. I wrote my first letter to the editor to the Post and it was published (but not before three Washington Post editors emailed and called me repeatedly trying to discover my hidden agenda. Neither they nor I could uncover one.)

The following are links to the original article and my letter to the editor. I for one have never ever regretted having had the bilateral mastectomy for all of the reasons the others have stated. I wish you the best as you make your very personal decision. Please trust your gut.

http://www.washingtonpost.com/wp-dyn...020403020.html

http://www.washingtonpost.com/wp-dyn...020703595.html

[Mary Jo]

Thanks so much for sharing that with us Cynthia.......especially your letter to the Editor.

I don't mean to get off topic here or away from Liz's seeking opinions on prophylactic mastectomy but more to add to the discussion by saying how I so agree with that letter to the editor.

I remember when I had decided on mastectomy first and not the chemo route first as my first onc. recommended. As I stated before he was WAY more concerned about me "losing" my breast than I was. Anyway, when I made the decision to go ahead with the mastectomy and not the chemo route first - his words to me were "I knew you'd make an emotional decision..............." MAN, was I pissed at that man. How dare he make such a statement to me. How dare he assume he knew what was best for me. He may be the oncologist and the one educated in cancer care BUT I was the cancer patient....I was the one with my life on the line and I was not making an "emotional" decision but an educated decision for what was best for me. Needless to say, that was the last day I saw that onc. When I made my decision to have my prophylactic mastectomy of my left breast, it too, was made weighing ALL my options. I DID educate myself. And when it was all laid on the table I knew what was best for me.

As we all know, statistics are just that - STATISTICS and we are NOT statistics. We are living, breathing, educated individual's who can make decisions for themselves. They may not be the decisions some would make but each of us makes the decisions that are right for us.

So anyway, RIGHT ON CYNTHIA.........................Way to go for giving it back to them with your wonderful words of truth and feeling from someone who knows.

Hugs ...

Mary Jo

[kcherub]

Hi! I hope you find a way to make the best decision for you! Here is why I chose lumpectomy and radiation (see my stats for the rest of my protocol):

1) My tumor was on the small side (1.4 cm., but I go with 1, as the .4 was a dot out)
2) I was only 34, and plan on having another child and breastfeeding (with either one or two breasts, whatever works after radiation)
3) I did not want to have to go through the recovery of a mastectomy (just having had augmentation 6 years ago was horrible as far as recovery goes)
4) I knew that my overall survival rate would be about the same (taking into consideration the above as well)
5) My best friend from childhood's mother had BC in 1988. She was a thin woman, with small breasts and a small tumor. She had a bilateral mastectomy (since she wasn't given a choice back then). She passed away about 6 years ago, after a recurrence in the chest wall and then brain mets. I always wonder if she had been able to find out if she was Her2+ would that have made a difference? However, all of my lovely friends here are going to be FINE!!! WELL!!! HEALTHY for years to come!!!
6) This might be a bit misguided, but I felt that if I recurred, I would rather it be in breast tissue rather than in the chest wall, and that since i use my right hand for about 90% of my work, I didn't want any higher odds of lymphedema in that arm. I do sketches for custom linens we sell in my store, and work on the computer a lot. You know how it is, ladies. You get very ABSTRACT in all of this!

I found that the article was trying to touch base on the fact that women do have a choice. I might not have the same viewpoint, since I did not have a mastectomy, but I think that years ago when women didn't have a choice, many of them were not as comfortable with not having a choice. Did that make sense? My grandmother didn't have a choice, nor did my friend's mother. It horrifies me to think that I might have been told what to do instead of deciding for myself based upon the facts as I knew them. I like that Cynthia was able to give her opinion--I have no idea what the second person was talking about! I do agree that many women (younger especially) choose the mastectomy since reconstruction options are better now. You have to remember, some of us younger ladies identify a lot with our breasts, right or wrong. It is just a comfort level on all sorts of other levels!!!

What a hard decision you have to make. I will be praying that you find the choice that is best for you, and without too much stress or second-guessing.

Take care,

[kcherub]

I was so long-winded that I forgot one of my original points! LOL I do not have (nor have I ever had) any other "issues" with the remaining breast, or the BC breast (well, before the BC). That being said, with your fears of continuing biopsies, mammograms, etc. I can understand the rationality. In this "game" the mental part is almost more important than the cancer part! I think we can all get through the chemo, herceptin, radiation, but the mental "schrapnel" is very hard.

As everyone here knows, every week I think I have some sort of met. I kind of giggle at myself in writing that, but it is so hard to not find something in nothing. This week, it's lung mets. Giggling at myself, but not at lung mets. Still worried that I do have lung mets, so giggling at myself again. I try to find the humor in some part of this. I have completely turned into a neurotic. Check back later for my post on whether or not I have lung mets.

For you, the PTSD that you might be saving yourself from might be worth just going for it! So, if I had been in your place with either breast (other than the chance of another biopsy later, and not having any cysts or calcifications in the past), I probably would have opted for the mastectomy originally, and a double if "issues" in the left breast.

Can I ask how old you were at diagnosis, and what your stats (see mine below) are?

Take care,