Views on Prophylactic Mast

Liz J. · 03-16-2008, 05:00 PM

Hi Her2 family,

I have looked over some of the old posts and am just trying to get some more opinions on having a prophylactic mastectomy on my remaining breast. I am really close to making this decision and I wanted to get your feelings on this.

I had a right breast mast in April 2005. It was my choice to have the mast as opposed to lumpectomy, but I have read that the survival rate is the same. It is just that I have a very dense, cystic left breast and am constantly feeling lumps in different areas. I had a biopsy in June 2007 due to one of these lumps. Thank God it was benign. I started feeling something in early February, had surgeon check and he felt it also. Sent me for mammo/sono which thankfully came out ok but he still wanted to biopsy due to my history. In the meanwhile I came down with an infection and the biopsy had to be postponed. I then began to feel other lumps and the original one seemed to shrink. I met with the surgeon the other night to go over all of this, have him check me again and tell him what I am contemplating. He agreed that if I was comfortable with this that it would make more sense than the continuing drama of tests, worries, biopsies, etc. If anyone has any input it would be greatly appreciated.

With Hugs,

Liz J.

dhealey · 03-16-2008, 05:31 PM

Liz, I had my second mastectomy (prophylactic) in June of 2007. My decision was based on the fact that I tested positive for the breast cancer gene and I was diagnosised with breast cancer 10/2006. The noncancerous breast had alot of calcifications and I didn't want the cancer coming back on the other side. I also didn't have reconstruction on the first mastectomy site so I always was concious of being lopsided. I have never regreted this desicion and have not elected to have reconstruction. Now I can be any size I want. Good luck in your decision. Another great thing no more mammograms.

Mary Jo · 03-16-2008, 05:40 PM

Hi Liz,

Of course as you know a prophylactic mastectomy is a very personal decision but I will give you my 2 cents worth.

I, like you, had a right breast mastectomy in July '05. Six months after treatment had ended I had a mammo of my left breast and they found an area of calcification that they thought was "suspicious looking" this "area" was near the chest wall and that's all I needed to hear - so after a stereotactic biopsy and the fears of "oh no not this again..." I knew that no matter what the result the breast was gone. Thankfully the biopsy was benign but I did opt for a prophylactic mastectomy. My surgeon didn't argue with me as she knew that I wanted both breasts removed from the get/go. My insurance approved the prophylactic and the rest is history.......

Me personally, I have never regretted the decision. Not once. When the pathology report came back from the prophylactic surgery, everthing was fine. Nothing - nada - and the Breast Care Clinic and myself were all cheering. I couldn't have been happier.

Now here I am 2 years and 7 months out (almost 8 months) and I am now in the process of preparing for DIEP reconstruction that will take place June 17th.

Good luck with your decision making.................

Mary Jo

Joannie · 03-16-2008, 05:56 PM

Liz:
I had my left breast taken off in April 2003 when they found a lump. At the time, my husband really wanted me to take the other breast. I just could not make that decision at the time. After 8 rounds of chemo, I decided to take the other side in Dec 2003. It was a very personal choice. I made it for several reasons. I wanted to do everything I could to keep from going through chemo again! I knew how aggressive HER2 was and I wanted to act aggressively against this disease. Cancer runs in my family, all forms. Lastly, and probably selfishly, my plastic surgeon was going to put an expander in after my first mastectomy. He was going to do a lift on the right side to try to make them match more. In the end, I wanted them to match and be perky! I have never regretted the decision. It was piece of mind for me. I even had the nipple reconstruction and the end product turned out great. They certainly are not the one's I was born with but they are a pretty great subsitute, considering all that I had been through. Good luck on making your decision. I know how difficult it can be getting to that point.

tousled1 · 03-16-2008, 07:05 PM

The decision you are contemplating is a very difficult one. When I was first diagnosed I immediately told my surgeon and oncologist that I wanted a bilateral mastectomy. Modifidd radical on the right side side (cancer) and a simple mastectomy on the left side.

The reason for my decision was that I had lumps removed from both my breasts in the past and I didn't want to take any chances. Yes, I was told that a lumpectmy followed by radiation would offer the same benefit.

I personally am very happy with my decision and if I had to do it all over again - knowing what I know now I would opt for the same decision.

Whatever decision you make just be sure you will be comfortable with it. You are in my prayers as you make this decision.

Bill · 03-16-2008, 07:20 PM

Hi Liz! I pray that God provides you with the information and guidance that you seek. I have a family member that was dx'ed with BC in one breast and had the other removed prophylactically, with no regrets and is doing well, but like many have said, it's a personal decision. Like you're doing, take your time, do your research, and reach your own decision. Love, Bill

Bev · 03-16-2008, 07:31 PM

Liz,

Peace of mind is priceless, although even with mastectomy, I think there is enough breast tissue left behind to recur. I'm hoping Herceptin will help,

WA Post ran an article 2 weeks ago,,, Drs were distressed that women were opting for prophy masts, Our Cynthia G wrote a good letter to the editor back regarding this. I don't know if I could find it.

Good luck in your decision. Bev

BonnieR · 03-16-2008, 07:59 PM

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 · 03-16-2008, 08:57 PM

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 · 03-16-2008, 09:02 PM

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 · 03-18-2008, 05:17 PM

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 · 03-18-2008, 05:47 PM

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 · 03-18-2008, 06:24 PM

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 · 03-18-2008, 06:30 PM

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,

Kimberly Lewis · 03-19-2008, 05:29 AM

Good topic - and very personal decision for sure. I felt compelled to do all that I could to prevent this cancer from recurring. I fought with my surgeon to do the other healthy breast. I fought to have the complete hysterectomy. I requested the genetic test and found after all my fighting that I was doing the right thing - my cancer was not only locally advanced but BRCA2 pos. So I guess you educate yourself the best you can and go with your "gut feelings". I have come to respect myself and my intuition a lot more after this trial... blessings to you and may you make the decision that makes you comfortable!

Cynthia · 03-19-2008, 08:19 AM

Mary Jo,

Thank you for your kind words. I applaud you for knowing when to walk out of one doctor's office and into another's. Too often I think we forget that doctors come in many flavors, and that it is up to us to seek out one (or two or three) that works best for each of us.

I really do think that this whole topic of mastectomy v. lumpectomy has gotten wrapped up a bit in gender politics. (That came through loud and clear to me in the original Washington Post article.) I think that the mastectomy procedures of old were terribly brutal and disfiguring. I believe that some in the women's movement accused the mostly male surgeons of butchering women needlessly because men didn't respect women (or their breasts) enough to try to save them. I think that perhaps the reaction to that accusation has caused the pendulum to swing a bit too far in the other direction -- i.e., some surgeons don't want to be accused of being uncaring and insensitive, so they tend to steer women away from mastectomies (which are still major operations, but done much better than in days of old) and towards lumpectomies without pausing long enough to lay out the pros and cons of each to each patient. In doing so, I think they may be doing their patients a disservice by discarding the legitimate concerns that some patients express about going the lumpectomy route. By focusing merely on the endpoint that mastectomies and lumpectomies have equivalent overall survival statistics, I believe that these physicians are missing the nuances that make each of us who we are. Just as I wouldn't want to return to the day when brutal mastectomies were the norm, I don't like the paternalistic view that if you choose a double mastectomy, you are somehow an ignorant, hysterical ninny.

Krista, I would hope your thoughts and feelings about wanting to retain your breast(s) are treated with every bit as much respect as are the desire of others to undergo a bilateral mastectomy. Please don't think for a moment that I am being critical of those who opt for a lumpectomy over mastectomy. On the contrary, once you have all the information required to make an informed choice, I whole heartedly applaud your making the decision that is best for you.

If the answers were easy, we would all know what to do. But they aren't, so we don't.

Ok, off the soapbox now and back to work.

Sheila · 03-19-2008, 09:13 AM

Just a quick question on this subject...I also wanted to go the double mastectomy route...I had had 7 biopsies in the remaining breast, so it to me seemedlike a no brainer. But the insurance company denied me, refused to pay for a mastectomy on a healthy breast. Considering the price, I could not afford to pay the $25,000 out of pocket (and that was 6 years ago). Just wondering how the rest got approval from the insurance company, or do they look at things differently now?

Cynthia · 03-19-2008, 09:46 AM

Sheila,

I am so sorry to hear that you had that fight. I had no problem getting the insurance to approve removal of the "healthy" breast. I believe the doctor submitted the request with a recommendation that it be done based on medical necessity. (In my case, my dense breast tissue made it very hard to diagnose me on scans and they were concerned about the ability to monitor my "good" breast going forward.) Perhaps the argument that you have had to undergo 7 biopsies is enough to get over the medical necessity threshold to get approval. If this is something you really want to pursue and are turned down, I would go through the appeals process. In light of the recent court decision slamming an insurer for cutting off coverage of a breast cancer patient in the middle of her treatment, you might find a different atmosphere right now.

Best.

Joan M · 03-19-2008, 09:28 PM

Liz,

Your topic is very timely. Thank you ladies for all your insight on this dilemma.

I had a mammogram of my left breast a few weeks ago and was called back for additional views and a sonogram last Tuesday. The sonogram showed an 8 mm nodule. The radiation oncologist said it had benign characteristics, but recommended a core biopsy because of my breast cancer history. I have to call tomorrow to make an appointment.

I've had a surgical biopsy on that breast after I was scheduled for my right breast mastectomy, and then a core biopsy about 18 months ago.

I started to consider whether I should have a prophylactic mastectomy (provided everything comes back benign for the core biopsy) so I don't have to deal with the uncertainty.

I had DIEP flap reconstruction when I had the right breast mastectomy, and I can't do that again on the left side. I'm not keen on an implant, but I guess it doesn't matter.