DCIS Unilateral or Bilateral?

hope25

I was recently diagnosed with DCIS and have to have a mastectomy have two areas on my right breast to far apart to do a lumpectomy. I also test negative for BRAC 1 and Brac 2 I have three cousins who have had breast cancer and have tested positive for both. I am still young just turned 40 and now have to decide advantages and disadvantages of bilateral vs. unilateral mastectomy. I would definitely appreciate hearing about other experience and decisions they were made.

taleena

Hope ...I am sorry you have
Hope ...I am sorry you have reason to seek out answers on this board, and joining the "club" that none of us wanted to join. Having said that you came to the right place for support and information. Of course the information is just from our own personal experiences. Personally my experience is different than yours.. but hold tight, soon you will find many who will chime in!

Welcome

~T

hope25

taleena said:

Hope ...I am sorry you have
Hope ...I am sorry you have reason to seek out answers on this board, and joining the "club" that none of us wanted to join. Having said that you came to the right place for support and information. Of course the information is just from our own personal experiences. Personally my experience is different than yours.. but hold tight, soon you will find many who will chime in!

Welcome

~T

Thank you
I have faith and good support system here with family and friends. I just have to make decisions soon have my surgery set for mid Jan.
Hope

Dawne.Hope

Varying Viewpoints
Dear hope25,

There are many varying viewpoints on what to do in your situation. I can only share my experience and how I came to a decision. Know that some will disagree with me. Bottom line is: Do your research, read all you can, get informed all you can and then, ultimately, you have to make a decision on what is best for YOU.

I was 39 when diagnosed with 1cm DCIS, grade 2, in my left breast. At the time, my mother was dying from BC. It runs in my family but I tested negative for BRAC1 and 2. I had extremely dense breasts that were hard to read on a mammogram. My mother was one of the extremely rare ones that developed endometrial cancer from taking tamoxifen for five years. The normal protocal for me was to have a lumpectomy, radiation and then take tamoxifen for five years. After talking with a radiation onocologist he informed me that the research that says that lumpectomy/radiation vs. masectomy has exactly the same recurrence rates ... that research is based upon post-menopausual women. For pre-menopausal women ... verdict is still out.

So ... because of my family history, and because of dense breast tissue that is extremely hard to read on a mammogram or an MRI, because of what happened to my mother when she took Tamoxifen, because of DCIS at a young age, I opted for a bi-lateral masectomy with immediate reconstruction with tissue expanders. It hasn't been easy, it's been a long road. There is still a chance that I could get breast cancer even with a bi-lateral masectomy. But knowing that I've done everything I can to fight the beast gives me peace of mind.

Bless you, hope. And may you make an informed decision that is best for YOU.

P.S. There is a whole section dedicated to DCIS over on breastcancer.org. You might want to check that out.
http://community.breastcancer.org/forum/68

hope25

Dawne.Hope said:

Varying Viewpoints
Dear hope25,

There are many varying viewpoints on what to do in your situation. I can only share my experience and how I came to a decision. Know that some will disagree with me. Bottom line is: Do your research, read all you can, get informed all you can and then, ultimately, you have to make a decision on what is best for YOU.

I was 39 when diagnosed with 1cm DCIS, grade 2, in my left breast. At the time, my mother was dying from BC. It runs in my family but I tested negative for BRAC1 and 2. I had extremely dense breasts that were hard to read on a mammogram. My mother was one of the extremely rare ones that developed endometrial cancer from taking tamoxifen for five years. The normal protocal for me was to have a lumpectomy, radiation and then take tamoxifen for five years. After talking with a radiation onocologist he informed me that the research that says that lumpectomy/radiation vs. masectomy has exactly the same recurrence rates ... that research is based upon post-menopausual women. For pre-menopausal women ... verdict is still out.

So ... because of my family history, and because of dense breast tissue that is extremely hard to read on a mammogram or an MRI, because of what happened to my mother when she took Tamoxifen, because of DCIS at a young age, I opted for a bi-lateral masectomy with immediate reconstruction with tissue expanders. It hasn't been easy, it's been a long road. There is still a chance that I could get breast cancer even with a bi-lateral masectomy. But knowing that I've done everything I can to fight the beast gives me peace of mind.

Bless you, hope. And may you make an informed decision that is best for YOU.

P.S. There is a whole section dedicated to DCIS over on breastcancer.org. You might want to check that out.
http://community.breastcancer.org/forum/68

agreed
Question for you about Tamoxifen - I have 3 doctors tell me regardless of unilateral or bilateral I wll have to be on it for 5 years. I really didn't want to be on any type of drug. I know it is suppose to limit your risk but your mom's case it didn't which is a little scary. My DCIS was found on my mammogram and then they did a biopsy then cancer. I had to do an MRI and they found another area of DCIS. long story short of it. I am doing the same type of reconstruction surgery you did. How long was your recovery time?

I appreciate any in sight from someone who has gone through this experience every case is different.
Hope25

disneyfan2008

so sorry...
I have never been through this...so no opinion but thinking of you

Heatherbelle

Hi - I didnt have DCIS but
Hi - I didnt have DCIS but had invasive ductal carcinoma in my right breast. I decided, after consulting my surgeon, oncologist, and plastic surgeon, to have a bilateral mastectomy. For two main reasons. 1-my breasts were pretty big to begin with. To achieve the best look from my plastic surgeon, I would have to have a reduction and lift in my remaining breast should I choose unilateral mastectomy. So I would achieve the best cosmetic result from choosing a bilateral. The other reason I chose this way is - I want to do everything that I can within MY power to beat this beast & prevent it from ever coming back. I'd much rather do "too much" in fighting this than not doing enough. I was 34 at diagnosis.
I'm also on Tamoxifen for 5 years. Other than hot flashes (that have really gotten less intense & less frequent), I haven't really had any side effects from it. Ultimately, there is no right or wrong that any of us can tell you about, and the only one who can make the best decision for you is you. Best of luck to you
*hugs*
Heather

Dawne.Hope

hope25 said:

agreed
Question for you about Tamoxifen - I have 3 doctors tell me regardless of unilateral or bilateral I wll have to be on it for 5 years. I really didn't want to be on any type of drug. I know it is suppose to limit your risk but your mom's case it didn't which is a little scary. My DCIS was found on my mammogram and then they did a biopsy then cancer. I had to do an MRI and they found another area of DCIS. long story short of it. I am doing the same type of reconstruction surgery you did. How long was your recovery time?

I appreciate any in sight from someone who has gone through this experience every case is different.
Hope25

My recovery time from the DMX, I took 4 weeks out from work, should have taken more. You'll come home with drains. If you do the tissue expanders, you'll come home with 4. They are extremely uncomfortable. Some women get them out within days, others it may take weeks or even months. Once you get the drains out, you'll feel soooooo much better. They will fill your TE's at the time of placement so the first time you look at yourself, while your skin may be saggy (depending on your prior breast size), there will be some sort of 'bump' where your breasts were. The thing is with the tissue expanders, once you're feeling better, it is time to get them filled and the fills are uncomfortable at best. The TE's job is to stretch skin and muscle. It doesn't feel good. Most of us as we get near the end of our fills, we're in pain. The TE's are HARD and the best description I've found to describe them is tortoise shells. They're immovable, extremely hard to sleep in and some of us, they look wacky. Mine were uneven, migrated over to my armpits ... I felt like I looked like a freak. You or your skin will determine when you've reached you're maximum fills. I would have liked to have gone bigger, but my skin was too thin. I had to stop at 310cc's. After you've reached your maximum fill, you wait at least three weeks, some PS's wait three months. And then you'll have your exchange. At the time of my exchange, my PS straightened them up, moved them closer and they look good. I ended up with 325cc silicone implants. They're wider than my natural breasts and not as much projection, but I look good in my clothes. Know that with implants you're not going to have the projection that you had with your natural breasts unless you are extremely small breasted. I wore a 32c before my surgery, now I wear a 32d. It sounds bigger than I really am. I need the 'd' for the width.

After your exchange, you're limited again with your movement although the recovery is nothing compared to the masectomy. I had my DMX in February, my exchange surgery in July and just had my nipple reconstruction a couple of weeks ago. And, probably in February, I'll get my tats. It will have taken a full year for the completed process.

Know that you won't have feeling in your 'foobs.' For some women the loss of that errogenous zone is too big of a loss and they opt for a lumpectomy if they have that option or keep their one natural breast so they have one in which they have feeling. You have to weigh the pros and the cons.

Know that going the DMX route is a loss. It is one, however, that I do not regret.

Re the tamoxifen ... tamoxifen is a powerful drug that does help prevent recurrence. Who knows ... if mom hadn't taken it ... she may have died of bc before she did (she was diagnosed with stage 4 bc in 2000). She only visited the gyne once a year. I think now they're recommending gyne visits every six months for women on Tamoxifen. In the end, it was the breast cancer that killed my mom, not the endometrial cancer.

cahjah75

Hope
I'm sorry you have to make these decisions at a young age. My sister had DCIS 9 years ago and had lumpectomy. She had a recurrence 2 months ago and had another lumpectomy. I'm the 5th in my family on my mother's side and the 5th on my father's side. I had the BRCA test done and was negative so dr said my sister's would most likely have the same results. I had a 6.1 cm Lobular carcinoma in rt breast and Lobular Carcinoma in Situ in left breast so I opted for bilateral mastectomy. I did not have reconstruction at this time. I'm 61. I just finished chemo and will start rads in January. I wish you the strength to make a decision you feel comfortable with. Have you spoken with your surgeon and a plastic surgeon. Let them help you in the process.
{{hugs}} Char

webbwife50

hope25 said:

Thank you
I have faith and good support system here with family and friends. I just have to make decisions soon have my surgery set for mid Jan.
Hope

I agree with Dawn.Hope
It is a very personal decision. I was dx'd with 3 neg. bc. in the right breast. I opted for bilat. mast. with delayed tram flap recon, which I had done 45 day after I finished chemo. I opted for the bilat. mast. I figured, I didn't want to go through it all again. At least not in my breast. It was a long recovery for me, but I'm kind of a wimp. lol I am actually very happy with the results, although I still have barbie boobs. Best of luck to you and Merry Christmas! Hugs.....Alison

hope25

cahjah75 said:

Hope
I'm sorry you have to make these decisions at a young age. My sister had DCIS 9 years ago and had lumpectomy. She had a recurrence 2 months ago and had another lumpectomy. I'm the 5th in my family on my mother's side and the 5th on my father's side. I had the BRCA test done and was negative so dr said my sister's would most likely have the same results. I had a 6.1 cm Lobular carcinoma in rt breast and Lobular Carcinoma in Situ in left breast so I opted for bilateral mastectomy. I did not have reconstruction at this time. I'm 61. I just finished chemo and will start rads in January. I wish you the strength to make a decision you feel comfortable with. Have you spoken with your surgeon and a plastic surgeon. Let them help you in the process.
{{hugs}} Char

Thank you for the kind words
char
It is amazing to hear everyones story and how everyone makes there decision. I received a call from my oncologist (SP?) today and they are going to retake my blood to test again for BRac 1 and 2 I had tested negative but the doctor found another gene mutatinon. i DON't understand it 100% what this might mean as far as another cancer gene. I just want to get this process over with and get back to my life. I have talked to my surgeon and plastic surgeon nobody will tell me what they think is best. My onocologist is the one who told me just to do the one breast and then in the next breath said but with your family cancer history there might be another gene now we are back to take more blood and more test.......................
Thanks and have a Happy Holiday

hope25

Heatherbelle said:

Hi - I didnt have DCIS but
Hi - I didnt have DCIS but had invasive ductal carcinoma in my right breast. I decided, after consulting my surgeon, oncologist, and plastic surgeon, to have a bilateral mastectomy. For two main reasons. 1-my breasts were pretty big to begin with. To achieve the best look from my plastic surgeon, I would have to have a reduction and lift in my remaining breast should I choose unilateral mastectomy. So I would achieve the best cosmetic result from choosing a bilateral. The other reason I chose this way is - I want to do everything that I can within MY power to beat this beast & prevent it from ever coming back. I'd much rather do "too much" in fighting this than not doing enough. I was 34 at diagnosis.
I'm also on Tamoxifen for 5 years. Other than hot flashes (that have really gotten less intense & less frequent), I haven't really had any side effects from it. Ultimately, there is no right or wrong that any of us can tell you about, and the only one who can make the best decision for you is you. Best of luck to you
*hugs*
Heather

I appreciate the response
Heather,

Thanks for the response and giving me your story. I appreciate you going into more detail about Tamoxifen. I really don't want to be on it, but I don't think I have a choice in the matter.
how do you feel now about your reconstruction?

Hope25

KathyLQ

Hope
I know your decision is personal, and wish you the best with making it.

For me, I didn't get clear margins with my lumpectomy, and thought because I would keep getting a smaller breast, just decided to have a mastectomy with my doctors recommendation. The mastectomy was a huge shock for me, I didn't expect the results. To be honest, I was angry about that for a month, I felt like I had been deceived.

But I'm 3 months out, and I've learned a lot more about my disease. I'm going through expansion now, to be set up for reconstruction, and I have major surgery ahead for me.

And I have come to accept what I did as probably the right decision for me. I think whatever you decide, you're going to be ok with it as time goes by.

I found a plastic surgeon's clinic (not mine) who puts on a reconstruction Exchange group. I met about 20 women there who did a show and tell, talked about single vs. double mastectomy, and their results. Even though I chatted with people online, I really felt that Exchange group, seeing real people, was one of the best things I did. Try to find one near you.

Double Whammy

KathyLQ said:

Hope
I know your decision is personal, and wish you the best with making it.

For me, I didn't get clear margins with my lumpectomy, and thought because I would keep getting a smaller breast, just decided to have a mastectomy with my doctors recommendation. The mastectomy was a huge shock for me, I didn't expect the results. To be honest, I was angry about that for a month, I felt like I had been deceived.

But I'm 3 months out, and I've learned a lot more about my disease. I'm going through expansion now, to be set up for reconstruction, and I have major surgery ahead for me.

And I have come to accept what I did as probably the right decision for me. I think whatever you decide, you're going to be ok with it as time goes by.

I found a plastic surgeon's clinic (not mine) who puts on a reconstruction Exchange group. I met about 20 women there who did a show and tell, talked about single vs. double mastectomy, and their results. Even though I chatted with people online, I really felt that Exchange group, seeing real people, was one of the best things I did. Try to find one near you.

My decision
I imagine many of us second guess our decisions, regardles of what we do (if we have a choice). We all do what we think is best for us at the time, and then we fret that we've done the right thing - too much, too little, etc. I think that as long as we remain disease free, we'll feel good about our decision. The problem is, no matter what - it is possible the beast will return. We all know so many women who are long term survivors as well as women who have died from bc. I have 3 good friends who are all about 8 years cancer free. Two had lumpectomies, one mastectomy. Two had chemo and rads, one only rads. All were late 40's, early 50's when diagnosed. When I received my dx of bc my primary care physician said "you'll probably need only a lumpectomy and radiation" (it was very small), so that was always in the back of my mind when I saw the surgeon. My decision for lumpectomy, however, was because I also had endometrial cancer and as soon as I'd recovered from the breast surgery, it was on to the hysterectomy and we had no idea what the course of treatment for the endo ca would be - in addition to the bc treatments. At that time I had no idea what was involved with reconstruction, so that didn't effect my decision at all. I wanted the least amount of trauma to my body as possible in order to tolerate the surgeries and the treatments. I was 62 (almost 63) when diagnosed, and that also factored in to my decision.

I hope you can find a decision you feel good about. Breast cancer and its treatments are about as individual as our personalities. I hope you come to a decision you feel really good about.
Suzanne

Heatherbelle

hope25 said:

I appreciate the response
Heather,

Thanks for the response and giving me your story. I appreciate you going into more detail about Tamoxifen. I really don't want to be on it, but I don't think I have a choice in the matter.
how do you feel now about your reconstruction?

Hope25

Hope-reconstruction
You're so welcome Well, i'm about 5 weeks or so past my implant exchange surgery. The expansion process got uncomfortable and honestly, painful towards the end. But, I told my plastic surgeon from the get go that I wanted big boobs again -they were big before cancer and I wanted them to be big after. I ended up getting 800cc silicone gel implants. At first, after surgery, I was a bit disappointed. They seemed really big around, but kinda flat. This is normal, from what I've read they all turn out like that at first. They have softened up and are rounding out and look much more like real boobs than right after the surgery. I believe it takes like 4 months or so before you see the final results of what they will look like. I had to wear a sports bra constantly for 4 weeks afterward, but now I don't have to if I don't want to I've yet to try shopping for a bra, because they still have alot of softening up to do yet. Cleavage wise - they look awesome, and are not saggy at all (like my old big ones were, thank you 2 children & breastfeeding, and gravity..) but, I don't have the projection of my old ones, from the side they don't stick out as far. But, it seems like every day they change a bit so when you have your surgery just remember it takes months for them to settle in place & "fluff" out. I don't go to the breastcancer.org website much, but they have a really good forum just about reconstruction & results. I don't have an exact link, but go to www.breastcancer.org, and go to the discussion forums, and there is one dedicated solely to reconstruction,expanders, implants, bra shopping. I have read through alot of them, I don't post on there but I read alot.
*hugs*
Heather