What Would You Do?

stacey2275

Hi everyone, my name is Stacey and I've just been dx with DCIS stage 0 grade 1/2, two lesions in the rarest quadrent (lower inner).  Awaiting brca results next wed.  I'm 41 with 2 beautiful boys 4 and 8.  I'm also ashkenazi jewish which gives me a higher likelihood of being positive.   And I read that if this did become invasive that having it in the lower inner quad makes it 50% more likely of dying.  BS said I could have a wide excision taking 1/4 of breast w/ radiation or mastectomy.  I also know its more difficult doing flap surgery to that quad if I have a lumpectomy, and then if they can do it the rad would make it more difficult for any future problems w/ reconstruction.

i'm also an a size cup so not much to work with and would love to be a c!  I'm very very concerned with matching the other boob as well!

Would you have a bilateral mx?  After all it is multifocal and dont' want to worry about microinvasion, rad, etc?

thanks, stacey

CrunchyPoodleMama

Hi, Stacey - so sorry to hear, but you're in the right place for all the info and support you could want! I didn't realize the lower inner quadrant was the rarest (mine spanned the upper and lower inner quadrants).

It's hard to say since it's such a personal decision, but I personally went with lumpectomy then "watch and wait" (I'm probably going to buck standard of care and forego rads, have a baby hopefully, live an aggressively anti-cancer diet/lifestyle, then see where I am -- if DCIS has returned, I'll probably have a nipple-sparing mastectomy at that point). We're in similar situations (I'm close to your age, large area of DCIS). 

BUT, I think a couple of things change that for you... 1) if you turn out to be BRCA +, and 2) the fact that you've expressed an interest in upgrading cup sizes, may make bilateral make sense in your case. Just understand that although reconstruction will help your breasts look great, most women never regain feeling in their breasts after a mastectomy. There are some exceptions but this is (to me) an unacceptable side effect that's led me not to choose mastectomy unless/until I have to.

If you're okay with that, though (many women are!), it seems that bilateral might be a good option for you...  and am I hearing a little hint that that's the option you're leaning toward?

JennyB100104

Hi Stacey,

So sorry you've had to join us here. My ILC was also in the inner lower quadrant, but I haven't heard anything about it being a more dangerous place...where did you read that? I'm very interested.

I had a very large lumpectomy (8 cm) but I was a C-cup to start, so I'm not sure how it works with different sizes. I'm happy with the outcome (big dent, but easily covered up by my bras). If I'd tested BRCA positive, I think I would have gone for a bilateral mastectomy, though.

stacey2275

Here's the link for the article -

http://www.docguide.com/news/content.nsf/news/8525697700573E18852570D60070CB69  

Just found out I'm brca negative for 95% of all mututions. 

CrunchyPoodleMama

Thanks, Stacey... my first thought when reading that was, SCARY article... but they studied women with invasive cancer, not DCIS... and the results showed a difference of only 6 people in the highest vs. lowest mortality categories... in a study of 588 patients, I don't know if that's statistically significant, but the absolute difference isn't nearly as scary as the relative ("50% more likely") difference, and the absolute difference is what you have to consider.

CONGRATS on being BRCA negative!! What great news! Have you decided what you will do?

mlrbelle

How large is your tumor/area of DCIS?  This pretty much made my decision for me as mine was more than 6 cm.  In the end, I also ended up with a microinvasion.  I would also check into getting MRI (if you haven't already) for both breasts.  If they find something suspicious in another area or in the other side, your decision will be that much easier.

In the end, it's your decision and very personal but this is how I made mine - 1) I knew one had to go; 2) I was BRCA - but have a family history and was very young (35); 3) I also had young kids (now 3 and 2); 4) MRI and surgical biopsy found ALH in opposite side; 5) I am a worrier and knew I didn't want this hanging over my head and also knew there was a risk if it did come back, it could be more aggressive/invasive.  I went with bilateral.  I do miss the breast sensation, but at about 3 weeks post-exchange, I've settled in somewhat.  It's not easy to deal with, but I have never regretted my decision to take both.

Good luck and so sorry you are having to face this nasty decision!

Deirdre1

Sorry Stacy that you have to be here at all.. but here is my experience with a MISTAKE that my genetic counselor made with me..  I had an MRI with an "area of concern" and my father dies of breast cancer so they (medical community) expected me to come back with a BRCA + (they were seeing a great deal more men with BRCA + so they assumed that mine would be).  While awaiting my BRCA test results my genetic counselor called to confirm my appointment that she had moved "ahead of several people" because she thought I was ashkenazi as well, she was speaking to me as if I was ashkenazi and so after a moment or two it registered with me that she had that piece wrong and I corrected her.  But in the piece of conversation where she THOUGHT my back ground was ashkenazi she was saying that even before reviewing my genetic map and with a father with bc that she would recommend a bi-lateral mastectomy.  She relaxed a bit when I stopped her but my point is that she was so concerned that she had shuffled around appointments to get me in quicker and was even making a suggestion of having my breasts removed AS WELL as my ovaries!  So if I had tested positive for BRCA I would have no hesitation to have my breasts removed.. but you haven't said you were tested for BRCA.. I would think that would be the first step - it does take a few weeks but still it's worth it for you and your offspring.  THEN if I were positive and have a ashkenazi background (& with a positive BRCA) I would definatly have a bi-lateral.  But please don't jump the gun.. one step at a time because losing your breasts CAN save your life if you are both BRCA + as well as ashkenazi but it's a huge price to pay if you are doing this prophylatically so please be sure that your movement's at this moment are careful!  Maybe as you are waiting for the BRCA results you could meet with some plastic surgeons and allow them to advise you as to what type of reconstructions are available to you under both situations.. and, as I say almost too often... try to fit a therapist into that list of doc's and specialists you are seeing right now because during this period of your dx and treatment many people will have lots of suggestions and it is so very important that you hear YOUR voice through all of that.. and a therapist will help keep you focused on YOUR VOICEt.

Good luck and I hope you are able to do whatever makes you the most comfortable and that you are BRCA- so you have more choices!!!  Best, Deirdre

apple

good luck to you.. please take heart in the fact that you are stage 0.. that's really good.

stacey2275

Thanks so much everyone!!!  Well the BRCA test is negative.  I don't even know how large the microcalcifications are!  But they're at 6 o' clock and 7 o'clock and I am probably a NA cup size (nearly A)!  Going to plastic surgeon tomorrow but honestly I really want my breasts to match and am concerned that if I have a unilateral mastectomy and even if I have an implant in the contralateral breast they won't match.  But I guess that's not really that important in the overall scheme of things I should just be thankful that it's stage 0 and they get it out.. 

Deirdre1

Stacey - so good that the BRCA was neg!!  That's a great hurdle and does give you more options!  so Congrats on that.. Now I was told that if I had the bi-lateral (and I was dx'ed DCIS) that the plastic surgeons could make me look more "even".. I had what was considered in this county (at the time) to be one of the best plastic surgeons around..  Well let's just say he was wrong and I came out looking like a very large (and I had told him to "inflate" me to where I was before a B cup) abstract painting - everything was crocked - I DID NOT get "better symetry"...  So now I have had a second reconstruct and I am much more happy with the outcome but I have more scars and am still bigger than I ever wanted to be..  So please keep in mind that you may be told you will get symetry but it is common for there to be problems with that even with a bi-lateral!   What they don't tell you is the incredible loss of the breast and I wish now I had even just one of my old breasts for the stimulation it had!  See you plastic surgeon and remember they get paid more if they encourage you to "take them both off" and yes that was a quote from my plastic surgeons!  Do what is right for you - I think it is the only way to walk away from all this without a major depression IMO..  Good luck and please keep us informed!!!  Best, Deirdre

Anonymous

stacy2275- It's probably one of the most difficult decisions you will ever have to make.  For me I chose bilateral MX.  I didn't want to have to worry about it for the rest of my life.  I, also, was quite small and a lumpectomy was going to take about 25-30% of my breast.  Combine that with radiation and reconstruction would have been quite difficult.  

I went with skin-saving, nipple-saving MX.  I felt it was a good compromise between lumpectomy and traditional MX.  It was challenging to find a surgeon that is trained in this procedure but I'm glad I did.  One of the other reasons I went with MX is I knew I wanted this kind.  If I did lumpectomy and my DCIS came back and was close to the nipple the option of nipple saving MX was no longer possible.  For me, this type of surgery eliminated a lot of the risk of recurrence, gave me the best possible cosmetic outcome and I was even able to go a little bigger than I was originally.  The downside is I no longer have sensation in the nipple and part of the breast and that probably will never go away. 

kym121

Hi, I was recently diagnosed DCIS, stage 0, grade 3; 4 cm in size. I have small breast so lumpectomy is out. I am scheduled for surgery on June 9th. I am BRCA neg. I know I have to have the left breast removed and I'm 99.9% sure of removing the right. On MRI examination they found a tiny suspicious spot right behind the nipple on the right that needed to have an ultrasound and possible biopsy, but when I went in they could not find it. So, they said we will monitor every 6 months. Well, I am 35 years with a 10 year old son, a 4 year-old daughter, a wonderful husband, and a great family I would like to focus my time and energy on. I don't want to deal with cancer anymore!!! I just want to hear from someone or somebody that may be going through what I am going through. I have met with BSs and PSs; actually have another appt with the PS today. Please reply!!

Anonymous

kym121- I was in your same position last December- DCIS (except I was Grade 2) with small breasts.  I originally had what my BS called a small lumpectomy but they did not get clear margins.  Additional lumpectomy would have taken 25-30% of my breast.  That combined with recommended radiation would have made reconstruction challenging at best.  I chose to have a skin-saving, nipple-saving BMX.  Since you have a suspicious spot close to the nipple you may not be a candidate for this type of mastectomy but if you are I would definitely consider it.  The challenge is finding an experienced surgeon because not all BS are trained in this type of MX.  If you find someone experienced the rate of recurrence is the same as regular MX or lumpectomy w/ radiation.  

Also, do the PS's you are meeting with specialize in breast reconstruction?  Not all PS do and there is a big difference between recon and boob jobs.  

I completely understand how hard it is to know what the right thing is to do.  I chose MX for all the reasons you listed- 13 year old son and two stepdaughters, wonderful husband and a great family as well.  I didn't want to have to worry about it for the rest of my life.