masc versus lump

For me, I would be fine with a lumpectomy and radiation.  That is a pretty small amount of DCIS and if they can achieve clear margins.......  A mastectomy is a big surgery and it's much harder than you may think.  I do know it is a very personal decision and if you truly feel you couldn't live with a lumpctomy then you do what you have to.  I wish I could have had a lumpectomy.  Also, know that just because you have a mast doesn't always mean no radiation.

I was just recently diagnosed with stage zero DCIS in my right breast.  I lost my mother to BC 5 years ago so I believe that strongly effected my choice of how to handle my diagnosis.  For me it has to do with peace of mind and giving myself what I feel is the best chance of survival.  I have been scheduled to have a BMX in June with immediate reconstruction with TE's.  I believe that this is more a mental decision for me than a medical one.  I have been told the lumpectomy with radiation is just as effective.  I think it is what you are comfortable with when you go to sleep at night.  Read a lot about it, ask alot of questions and go with your gut.  Good luck to you and I pray for a fast and full recovery no matter your choice. 

I was diagnosed with DCIS grade 3 in what looks like a 10 cm area.  I am going to have a lumpectomy with radiation if they could get good margins.  The doctor tells me that the same result you get from lumpectomy and radiation and with mastectomy.  To me is a question of trying the least invasive first.  There is always time to do a mastectomy.  The radiations takes care of any cells that may have escaped.   But like everybody says here is a question of choice and what it's going to make you sleep well at night.

Best wishes for you.

Maria

I faced the same choice with my DCIS (grade 2) and decided on skin-saving, nipple-saving bilateral mastectomy.  I thought it was a good compromise.  I am quite small to begin with so a lumpectomy was going to take about 25% of my breast or more.  Combine that with radiation and reconstruction becomes kind of challenging.

The NSM left all my skin and nipples and just removed the breast tissue.  I had tissue expanders placed and will eventually have implants.  The surgeon placed the incisions below the fold of the breast.  My surgeon said when I was all done you wouldn't even be able to tell I had a MX.

I'm not saying this was easy.  It's a rough surgery, the TE's are uncomfortable and I really didn't want implants but I knew that for the rest of my life I would be a nervous wreck that the cancer would come back and would be invasive next time.

Good luck with whatever treatment you decide upon! 

I was recently diagnosed with a re-occurence in the same place. My original surgeon recommended a mastectomy, and then my hospital went out of business. 6 weeks of looking for another surgeon, trying to assemble all my records, waiting for the appointment, doing research and finding this website !

Finally saw the new BS last week and she recommends an excision, no mast, see what it shows, and then just watchful regular follow-up.

I feel whipsawed!

Because my DCIS is low grade, I am opting for the less drastic surgery. It should be similar to the lumpectomy I had 3 years ago. I have no family history which is one less factor weighing in on the mast side.

After doing a lot of reading and research and preparing myself for a mastectectomy and recon, given the option, I want to keep my original parts when possible, but that is a totally personal decision. It's also the (possible) side effects: lymphadema, "maintenance" and possible revisions after recon, replacing implants every 7-15 years.  I can live with my decision. Anyway there are no guarantees, with C or life. I had a lumpectomy and 33 rads 3 years ago, and the odds were low.

Hope that everything works out well for you whatever your decision, whatever you choose. Hang in there! You'll find this website provides both information and support.

Lil

First DX DCIS,5/2007. Lumpectomy, 33 rads. Re-occurrence 3/2010, excision next week.

Long story but the highlights:  I had a choice of (1) mastectomy, followed by chemo, rads; or (2)  chemo, then surgery, then rads.  I chose the latter because I was too stunned right after dx to want to deal with major surgery and recovery.

The chemo shrank my tumor completely; they couldn't find any trace of cancer with the MRI or through other means.  So I suddenly had a choice of lumpectomy or mastectomy. My surgeon was recommending mastectomy "to be on the safe side."   It was a tough decision but my gut said, do the lumpectomy first.  I knew if my margins didn't come back clean I'd still have to have a mastectomy but I wanted to go with least-invasive and at least see what that showed.

What it showed was no cancer at all, in the margins, in the original lump tissue, or in any of the 17 lymph nodes they took (by the way, they certainly can and do look at lymph nodes with a lumpectomy, it's just another small incision).  I did still have rads. 

I just met with my surgeon again this week for my first post-dx mammogram results and he is still beaming that I went with my gut and proved him wrong.  You gotta love a surgeon who isn't too egotistical to admit he's wrong.  He also said, he was glad I went with the lumpectomy because my prognosis is just as good with the way I went.

That's my story.  Bottom line, as others have said, is to listen to your heart and follow what it tells you.  Only you know what is best for you, although I do feel as others do, given your dx why not go less invasive?  But it really is what will help you feel most comfortable as you move forward through all this. It's not a right vs. wrong -- it's only what feels best to you.  Listen to your gut and you'll know.  Good luck and a warm hug.

Southport I couldn't have said it better!  I wasn't able to keep my nipples though and I do wonder if that would have made the emotion side of it easier (at least a bit) - but even though you make the decision with all the potential outcomes scenerios in your mind after the surgery to remove the breasts it can take some of us years to feel "normal" again.  I only started to feel like myself this year and that was 3 years out..  If I had a do over, and knowing how I would react afterwards (very depressed and feeling much like southport describes above, lost a piece of myself) I would select the lumpectomy.  I too had small breasts and would have lost much of my breast to the surgery but I believe that is what I would address with a plastic surgery.  I hope you come out feeling like this was the best thing for you and not with 3 years of depression but please do everything you can before the surgery to secure that!  And, as always, I want to suggest that you add a therapist to your team of docs (breast surgeon, plastic surgeon, oncologist etc) so that you can hear your voice above the other's.  There are so many other opinions (family, friends, co-workers, etc) and they can all feel very valid, but what truly counts is YOUR voice and a therapist will help you find that, find you, amists all the other suggestions.   Best, Deirdre

Helenap, take a deep breathe.  The "good" part of DCIS is that you do NOT have to rush into decision making.  I was diagnosed in November '09 and didn't have surgery until Feb '10 and was specifically told by my doctors that I was NOT endangering my life by taking time to make informed decisions.  To me, breast cancer surgery is like the old adage about marriage:  surgery in haste, repent at leisure, if that makes sense.

I would say you should start with second opinions.  Do you have a surgeon who specializes in breast surgery?  that makes a big difference.  Are you comfortable with the surgeon?  Even if you are comfortable, no harm in getting a second opinion.  I was urged to get second opinions by someone who is a doctor and I'm glad I did.  I thought I was okay with surgeon #1 but I felt palpably better with surgeon #2.

You say you want lymph nodes checked.  As others have said, that can be done without a mastectomy.  However keep in mind that surgery poses its own potential complications that should be considered. 

If you are small breasted and facing a significant lumpectomy or considering a mastectomy, I would encourage you to speak to plastic surgeons in advance of making the surgery decision.  They are the best ones to tell you what your options are for reconstruction, if that is important to you.  But even if you think it won't be, it helps to have their perspective on what the post surgical impact is of certain decisions.  For example, lots of plastic surgeons will not do implants on a radiated breast.  That changes your options for reconstruction.  And lots won't do anything until you finished treatment.

Finally, I agree whole heartedly with Deidre1's recommendation of getting a therapist, especially one that specializes in cancer patients.  You don't know how helpful it is until you sit down and talk to them.

hang in there!

Hi! I'm Lezlie. Because my mother died of breast cancer at 57, (she and I both diagnosed at 49) I opted for the bilateral mastectomy. All tests were clear no cancer cells in surrounding tissue or lymph nodes. Yes, it is a relief to know.Also, if you only have one breast done..a. they won't match...he he   and b. you eliminate the other breast from getting cancer. I have humored myself by believing it's a boob job. Everyone of my friends are jealous! I didn't ask too many questions prior to surgery as to the end results and the processes inbetween cause I figured it had to be done and have to go through it so why worry about something I can't change. Didn't expect the numbness due to nerves being removed w/ the nipple, and thought it would be completed sooner but it is a long process. love and good thoughts to you 

Hi! I'm Lezlie. Because my mother died of breast cancer at 57, (she and I both diagnosed at 49) I opted for the bilateral mastectomy. All tests were clear no cancer cells in surrounding tissue or lymph nodes. Yes, it is a relief to know.Also, if you only have one breast done..a. they won't match...he he   and b. you eliminate the other breast from getting cancer. I have humored myself by believing it's a boob job. Everyone of my friends are jealous! I didn't ask too many questions prior to surgery as to the end results and the processes inbetween cause I figured it had to be done and have to go through it so why worry about something I can't change. Didn't expect the numbness due to nerves being removed w/ the nipple, and thought it would be completed sooner but it is a long process. love and good thoughts to you 

helenap-

So sorry that you are having to go through this too.  This is such a crappy disease, I hate it!  The only nice thing about DCIS is that you have some time to make decisions.  You can always start with a lumpectomy with sentinal node biopsy then go for the mx if you want.  Take your time and go with your gut - don't let anyone pressure you into anything...You should know that the mastectomy doesn't cut your risk to zero - since they can't get all the breast tissue out there is still a 1-2% risk of recurrence and many docs are reluctant to have post mx screening other than a clinical breast exam (the thought process seems to be no data = do nothing with regards to this although there was an interesting article by Esserman et al on post tram screening recently in Jan 2010).  So this can cause stress too - for me personally I wonder what is going on in there, even as early as it is!

From my perspective I am about a month out from a bilateral mastectomy. For me lumpectomy was not on the table due to having numerous areas of DCIS scattered throughout my right breast.  I chose a bilateral because my breasts proved to me that they can make cancer cells.  I have no regrets about what I did as my primary goal is to live and be a mom to my kids but if I was older, didn't have the multifocality, or was receptor positive my decision may well have been different.  I am BRCA negative - if I was positive I would have done the bilateral regardless. 

I had a tram immediate reconstruction - it is a major surgery.  Mine was 14 hours long, I was in the surgical ICU for 30 hours and then inpatient for 6 more days.  My hospital bill was in the 6 figures but fortunately here in Illinois there is a law that women with mastectomy can have whatever kind of reconstruction they choose and insurance has to cover it.  

Over the last week I am just now starting to be able to move around, stand up straight, etc.  I have had to do physical therapy to be able to lift my arms above my shoulders (the right where I had a sentinal node done was especially restricted in mobility).  I do have some limited feeling on the underside of the breast on one side under the incision and the nerves are starting to come back in my chest and armpits.  My sensation has gotten more pronounced on the part of the chest wall under the breasts.  In a t-shirt you wouldn't know what I had done but it is a loss and I know it will never be as good as what I had before.  

Saggy as they were after nursing 2 kids, they were my breasts and they nourished my children, they gave me pleasure, they were part of me that I miss and will never come back.  And I will echo what others on this board have said - you don't really know the physical and emotional toll of mastectomy until you actually go through it - it really sucks. 

As I said, this is a huge decision, and I am not portraying the negatives to try to dissuade you from the mx, but if that is how you decide to proceed you should go into it with eyes open and with a full understanding of everything.  For me, it was the right decision, but it was a decision I never wanted to make...Best of luck to you on this journey and let us know what you decide...

Meredith 

My experience of having a lumpectomy first is this. It was almost ten years ago now, and I lost close to a third of my breast to acheive wide margins. Over time radiation shrank the breast and with a little admitted weight gain over the years, my unaffected breast was almost twice the size of the affected one. Very uncomfortable in terms of assymetry and all. Surgery was an option for the unaffected breast, but I thought it was a little crazy to do that. Mostly because even though I still had the other breast, it really wasn't much of a breast anymore. Harder, no sensation really other than discomfort and an overly sensitive nipple.

With the last diagnosis another lumpectomy wasn't really an option since I had already had radiation, at least not a good enough option. So I went with the mastectomy. Now with a post radiated breast skin sparing reconstruction was an issue, since the skin is often damaged and compromised. My skin was pretty good but TE expanders wouldn't be an option, so I would have to reduce the other breast or get some kind of tram, which would mean even bigger surgery. And sparing  the nipple would be impossible.

I don't know how often DCIS comes back after lumpectomy and radiation. Being ER positive I probably would have benefitted from Tamoxifen. But they didn't have test to know that then so it was kind of 50/50, and I guess I figurecd I would be okay without it since they didn't push it overly hard. So I dont't want to make it sound like it will come back for everyone. I guess what I'm saying is that lumpectomy + rads is definitely easier than a mastectomy. But it comes with its own set of unique problems as well that are worth considering. 

Even though I'm 6+ months into my journey, this has been a VERY helpful thread... many thanks to all of you who have weighed in. After a possibly not-so-successful re-excision, I'm once again looking at possible mastectomy vs. radiation and all of your viewpoints are so helpful.

Lump vs mx is a difficult decision. For myself, initially I thought since my dcis wasn't invasive there was no need to worry. I had a lumpectomy with wide margins. I was told my pronosis was good and my chances of a recurrence was low. I chose a lumpectomy for these reasons,

1. $$$ ... lumpectomies cost less.

2, I was told that mx and lumpectomies were  the same for recurrence. My likelyhood of a recurrence was small, and if it did happen the doctor said they would catch it while its still dcis. The doctors didn't seem worried, so for that year I pretty much forgot about it.

3. I like my breast. I thought it would feel odd with something foreign in me.

4. Chose lumpectomy only ... because if I had radiation, and if I by chance had a recurrence, reconstruction would be difficult. Decided against tamoxifin due to stroke risks, and other side affects. Felt more comfortable with bc risks over side affects of tx.

BUT, as some of you know, I had a recurrence one year later with mostly .03 m margins. I again chose a lumpectomy for the same reasons. Except this time I made a decision to go to a naturalpath, and get healthy!

The problem with a lumpectomy is you have to see the bc surgeon, mammo's and mri every six months. Once you have a recurrence, you are looking over your shoulder for cancer to show up its ugly face. After my lumpectomy I had a colonocopy. I've checked molds carefully. I've had 2 cut off. 

Reasons for mx

Lately, I'm thinking about a mx, at least on the now smaller breast. I prefer having a nipple, skin saving surgery. I'm afraid if I wait until there is more dcis that I may not have that option. I also have worrisome lumps. After a year and a half, I'm done with the waiting game. It's weirding me out! 

Having a mx would get rid of the ducts and take away bc concern for me. Hopefully.

Ebarry brings up one of the points I forgot about when choosing the mx for myself i.e. the constant mri's and biopsies that would have resulted from having another lumpectomy without benefit of radiation. I feel like I've already been through so much of that, I just didn't want to carry on with it forever.  But even with that it was still a tough decision to make and go through with.

That said, it isn't going to recur in everyone. If you are ER positive and take tamoxifen and get radiation, I think the recurrence rate is really low. In my case the radiologists thinks it's possible that I was resistant to the radiation since it came back in the same place. So maybe if I had taken the tamoxifen I would have had better luck. But as I said that was kind of a shot in the dark ten years ago.

Also, if it is your first incidence, you won't need the constant screening i.e. MRI's and biopsies. I think that is only for recurrence, since I was followed on a yearly basis with mammogram  only after the first year which was at 6 months.  Until things started showing up again. But other than that it really wasn't much different than what someone without an abnormailty would havel.