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double mastect -- dcis

frostie
Posts: 1
Joined: Nov 2003

I was diagnosed with Ductal Carcinoma in Situ in July. I have had two excisions(lumpectomies) and they have not been able to get clean margins. My surgeon was willing to try a third surgery, but I decided it was time to do more research. My DCIS is multifocal, low grade. Three additional surgeons have said that they wouldn't feel comfortable that they could get all the bad cancer cells with another surgeon, and that mastectomy was my best option. I have come to terms with this recommendation and am ready to have the mastectomy, but one surgeon suggested a double mastectomy -- because of my age. He said that at 41, I have a 20 percent chance of recurrence in 15-20 years and that at that point, a 50 percent chance that it would be invasive. I would like someone to talk me out of the double mastectomy, but I'm not sure there would always be doubt. Of course, then I consider, most women with breast cancer do not have double mastectomies.

Any insight would be greatly appreciated.

BBK
Posts: 53
Joined: Apr 2003

I was originally dx-ed with DCIS in November 2002. In January 2003, I had a mastectomy with Tram Flap reconstruction. In hind-sight, I'm thinking I should have had a double mastectomy, as I can never repeat the Tram Flap if I have the cancer come back. But, at the time, I wasn't sure I wanted to lose both breasts. Now, they're watching something on the other side. Always nervous...

A NOTE -- When they did the surgery last January, they discovered that my DCIS had indeed become Invasive Ductal Carcinoma, so the mastectomy decision had been a good one. They got it all, and I only had to go through 4 rounds of AC Chemo -- no radiation. The chemo was enough! My orginial dx was stage 0, my ultimate dx after surgery was stage 1, no lymph node involvement. So far, all other scans are coming back negative for any spread of cancer.

I wish I could give you some sage advice...my surgeon didn't want to take the second breast (if it ain't broke, why fix it?), and at the time, I agreed with her. I think she'd still tell me the same thing today. So, perhaps...just the one is enough. But, I would seriously consider the mastectomy, since the lumpectomies haven't given you clean margins.

For what it's worth, I was 43 at time of dx...now 44. I'm now on Tamoxifen for 5 years. Nasty side effects there...the cancer never hurt...but, the treatments can kill you. Chronic pain now, and chemo really messes with your body. But, I'm alive and for now, that's all I really care about. I have unfinished business to take care of...like raising my daughters!

God be with you. He will take care of you through all of this! And, He will give you peace about it.

Sandis
Posts: 85
Joined: Mar 2003

You have a difficult decision. I was diagnosed with DCIS last November. When they did the first lumpectomy, they found out it was invasive and DCIS but they didn't get clear margins. I had genetic testing and found out I had the BRCA1 gene which greatly increases the likelihood of recurrence. I had a bilateral mastectomy. I had enough fat in my stomach to have tram flap reconstruction on both breasts. I'm really glad I had both breasts removed and reconstructed. They match and I don't have to worry as much about cancer recurring. I spoke with someone yesterday who had bilateral mastectomy with implants for reconstruction. She's also glad she had both breasts removed (she also had the BRCA gene). Anyway for what its worth, I'm glad I just got rid of them both. But you have to do what's right for you and you'll never really know if you did more than necessary. But good luck.

SweetSue
Posts: 219
Joined: Feb 2003

I had a bilateral, and I am not sorry. My so-called healthy breast had atypical cells present which could have turned cancerous at any time. Plus, if I choose reconstruction, my breasts will match-----really the least of my worries, but this is important to some women.
It's really a personal decision......good luck.
Sue

DeeNY711
Posts: 482
Joined: Apr 2003

I chose to have bilateral mastectomy, too. I was originally told that half of the "unaffected" breast would be removed to reshape it into something that could be matched on the other side with a prosthesis of commercial size and shape. I figured if half of the breast was going to be removed anyway, I would rather have the entire breast removed to prevent ever having to go through this twice. Post-op, Pathology discovered that the "unaffected" breast was peppered with tiny spots of lobular carcinoma. Neither the lump on the right side nor the spots throughout were ever visible via mammogram or ultrasound. I did not have reconstruction.
When making your choice, ask yourself if it comes back in the future, would you regret choosing Plan A over Plan B, or whether Plan C might even be best. It is such a terrible page to be on, and you have our thoughts and prayers with you. Love, Denise

SweetSue
Posts: 219
Joined: Feb 2003

Denise, quite often lobular carcinoma is not seen on mammograms until it's stage 3......at least, this is what I was told. Maybe it's different with the CAD mammogram.
I don't have to tell you........you made the right decision to have the bilateral mastectomy.
Sue

obliva
Posts: 18
Joined: Nov 2003

I was first diagnosed with breast cancer in my right breast in 1997. Had a lumpectomy, chemo and radiation. Early in 1999 I decided to have reconstruction on my left breast for balance. DCIS was found during surgery, but everyone believed the reconstruction got it all. Since then I had mammograms every 6 months. My last was October 2002. In February of this year I found a huge lump in my left breast. At first it was thought to be an infection since the ultrasound found nothing worrisome. After antibiotics and no response, my surgeon did a needle biopsy. Nothing grew so he decided to remove the lump and biopsy it. That was in March. It was malignant. In April I had a double mastectomy. Another lump was found in my left breast during that surgery. Both lumps were nearly an inch in size. I started on chemo, but had an allergic reaction. Then I started Taxol. Got an infection. Stopped Taxol until the infection was gone. Started Taxol again. Finally finished Taxol on October 23rd. I am now on Arimidex. How do I feel about the double mastectomy? Relieved.

workingtired's picture
workingtired
Posts: 14
Joined: Apr 2003

Hello,
I went through two excisions myself back in the spring of this year and had the same problem with unclear margins and non invasive, low grade dcis. I had a mastectomy with tram flap reconstruction in May 2003. I did not have the other side removed. I am 42 years old, and did not need any further treatment and had the option of taking tamoxifen. I was told my odds of getting cancer in the other breast were around 20% and could be reduced to 10% with the tamoxifen, but considering the odds of side effects from the tamoxifen I chose not to take it. My ONC supported me with my decision, but informed me that if my cancer was invasive, I would not have been able to have this choice.

With careful watch and exams every 6 months I feel confident with my decisions. If you look at the odds of getting cancer later in life without having it in our 40's it doesnt seem to be as much of a drastic amount, your odds increase with age anyway.

Remember, your cancer is non-invasive and was caught early you should be proud of yourself for getting checked.. that's what getting mammograms and doing self exams are all about. We just wished it wasn't us who found something.

Hope this helps

SweetSue
Posts: 219
Joined: Feb 2003

Maybe it's me, but if something will even give me a 2% better chance of survival, I go for it.

DeeNY711
Posts: 482
Joined: Apr 2003

Me, too.

inkblot
Posts: 705
Joined: Jul 2001

Hi Frosty:

I had lumpectomy. No DCIS. Solid tumor, excised with clean margins.

My heart goes out to you. It's a tough decision to need to make. Some days, we may wonder if there is any justice! As if it isn't enough to be handed a bc dx, then we have to get about educating ourselves at such a critical time. To those who haven't been where we have, it would seem almost insane to have so much to handle at once! Yet we somehow, thankfully, get it all accomplished. We ideally want to try to create a forward vision as close to 20/20 as possible, because we all know that hindsight is forever 20/20. If we can come through with no regrets, then we are in good shape, indeed.

For what it's worth, here's my thoughts about your situation, just as food for thought. If clean margins cannot be obtained on your multifocal DCIS, then obviously, a mastectomy makes sense on that side. Have your docs mentioned radiation? If you had nodes removed, what was the status?

You seem prepared for a single mastectomy but that your doc is recommending a double seems
puzzling. At this point it would be strictly prophylactic. You'd need to really believe in what you're doing and why, in a big way. Do consider the fact that even with mastectomy, bc can occur and recur in the remaining breast tissue and/or chest wall. A fact you don't want to ignore when thinking about the percentages your dr. quoted of a new cancer developing in your healthy breast 15-20 years from now. Mastectomy cannot remove ALL breast tissue. If you choose to keep your healthy breast and 20 years from now you don't have bc in that breast then you will have proved that keeping the breast was the right choice. However, if you have the double mast., and have no further cancer in 20 years, was it the right choice? This is the tricky part of bc...no guarantees and no way to absolutely prove, scientifically speaking, that any one thing was right or not right.

Other factors to consider: Is there a history of bc in your family? Have you had genetic testing?

In Denise's case, a double was the right choice for her but for different reasons at the outset. Since the pathology discovered LC in what she thought was her healthy breast, then it reinforced the rightness of her decision. LC is not technicaly breast cancer but a marker and I know if I had LC, I'd want it removed before it could become bc.

Reconstruction is a major surgery and can be quite painful with various complications possible, as with any surgery. Mastectomy is no picnic either. Some women have few problems from mastectomies while others have many. Some problems can be permanent while others are transient and dissipate with time. Again, everyone is different.

Continue to research...continue to talk with other women who've had mastectomies and speak with your doctor in depth about what to expect, regarding the healing process, any possible complications/problems, etc, with or without reconstruction.

Ultimately, you'll sit down and decide what's absolutely best for you, depending upon how you feel about all the info.. Every case is different and each woman is different in what she wants and needs. Try not to panic and have a knee jerk reaction to percentages alone. You must consider far more than that in order to make such a big decision.

The most important thing, when everything is said and done is that YOU feel confident about the decision you make as well as your reasons for having made it.

I know only two women who say that they regret their mastectomies. Both say that they were just so scared that their first thought was to have both breasts removed. They also say that if they had known more at the time, they'd have made different choices. That's hard to hear and I feel so sad for both of them. Thus, I encourage anyone considering such a major decision, to take the time to carefully research and understand all they can before making a final decision.

Wishing you good luck and sending warm thoughts your way.

Love, light and laughter,
Ink

annyo
Posts: 7
Joined: Nov 2002

It's a tough decision you have to make. I had DCIS diagnosed in one breast but because of my history and hard-to-read mammograms, it was suggested that I have a double, which I did. I don't regret it, and in some ways I think it has been even easier, clothing and bra-wise. (I did not have reconstruction.) When they did the pathology on the second breast, there was DCIS there too which they had not known about but suspected. I do not envy the decision you have to make--for me, it was so strongly suggested that I didn't have such a quandry, but it's so hard to compare situations because each case is so different from every other one. My best to you.

lala2010
Posts: 1
Joined: Mar 2013

I was diagnostic DCIS stage 0 last year, I decided for double mastectomy with BC. noe my gyn told me that it will be good to remove my ovaries. I wonder how necessary is this procedure after breast cancer... no family history.. Brac1 negative Brac2 uncertain. Does anybody has the same situation?

burcu123
Posts: 70
Joined: Jan 2013

I had stage 2 disease, it was far enough from skin and nipple so they were able to do skin and nipple sparing mastectomy with immediate reconstruction. During my breast cancer journey only time I was pleasantly suprised was the results of the surgery. Cosmetically it is fantastic, there are some pictures in internet

I did not require radiation therapy

Lynn Smith
Posts: 1265
Joined: Mar 2011

I was Stage 0 non invasive DCIS.Tumor was 1/2 centimeter.Second surgery showed margins were clear.Also 3 benign tumors were found.2 at the time as both surgeries.The lumpectomy and the check margin surgery.One almost 2 years later.A firbroid. It's being watched. I got a clear mammo in January.My first annual since my dx in Aug 2009. I have 2 friends who were dx with Stage 3 and they had lumpectomies.One is a 18 year survivor the other a 8 year survivor dx with a fast growing cancer.

I just turned 66 and was dx at 62.Family history of 4 being dx with BC.My mom, niece. me and my sister.My mom had 1 breast rumoved at 21, niece had a double masectomy at 30, me lumpectomies(with tumors since I was 20) and my sister a double masectomy with cancer in both breasts. Different kind in each breast.

Lynn Smith 

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