Reaching a Final Decision

mkoz- I, too, was diagnosed with DCIS grade 2 back in December.  I elected to have a bilateral MX.  There were many reasons for my decision.  I did have a family history of breast cancer (Grandma).  I did not want to do the radiation that would have been necessary after lumpectomy.  I, too, was small breasted (A cup) so a lumpectomy would have taken about 25% of my breast.  That, combined with radiation which can change the skin, would have made reconstruction tricky at best.  I did not want to take Tamoxifen for 5 years after lumpectomy as it can give you all the symptoms of menopause.  I did not want to constantly worry about recurrence for the rest of my life.  (Bilateral MX lowered my risk to about 1-2%.)  I chose bilateral because it can be extremely hard to get symmetry if you just do one side and I would still constantly worry about recurrence in the other breast.

All that being said there are things you need to know about mastectomy.  It is major surgery with about a 4-6 week recuperation time.  It will be an even longer process going through reconstruction.  From beginning to end it took me 4 full months to be done with all my surgeries.  You will lose sensation in your breasts.  Some may or may not come back as the nerves regenerate.  Any reconstruction you do is never going to feel like your natural breasts but they can make them pretty close.  I elected to go a little larger than my natural size and I actually think they look better than before but I do miss the feel of my natural breasts.  I just had my final surgery where the implants were placed, though, so still am getting used to them.

One thing I did want to make you aware of is you may be a candidate for a nipple sparing mastectomy.  Not all surgeons are trained in this procedure so yours may not.  My first breast surgeon never even told me this existed.  I found out by doing my own research.  When I asked her about it she tried to talk me out of it and then I found out she wasn't even trained in it.  I immediately scheduled a consultation with an experienced BS who was and found out I was an excellent candidate.  Not everyone is.  There are certain criteria you need to meet but the main two are your DCIS cannot be too close to the nipple and it works best on small breasted women.  I had a NSM in March and am very pleased with the results.  I know that being able to keep my nipples went a long way towards making me feel whole after the MX.  Some surgeons are against NSM, saying that the rate of recurrence is higher but current research shows this isn't true.  If your NSM is performed by an experienced surgeon the rate of recurrence is exactly the same as traditional MX.  During NSM, the surgeon will scrape the inside of the nipple and do a biopsy right then and there.  If any cancer cells are detected the nipples are removed at that time.  I knew that was a risk going in but I have never heard of this happening.  Once you have your MX your ducts are all removed (which is where DCIS is contained) which is how any cancer cells would have been fed to the nipple.  Without the ducts the DCIS cannot start in the nipple.  Of course, all this is based on your sentinel nodes coming back clean as well!  Anyway, did want to let you know about this option in case your surgeon failed to mention it as mine did.  If you're interested please consult with a surgeon who actually performs this procedure to truly find out if you're a candidate.  Good luck! 

mkoz- sorry you have to join this club too.  Kate33's advice is very good.  I would definitely research around and interview at least 2-3 PS before you decide on the recon choice.  Keep in mind a particular PS will only tell you what they can do - not what is possible and the statistic I have heard thrown around is that about 70% of the options that are available will not be discussed with you.  

As for the other question, BMX or not, it is true, for DCIS at least (I think if IDC is found it changes things), after a BMX tamoxifen is usually not offered (benefit <1%).  

I opted for BMX myself due to R breast multifocal ER/PR negative DCIS (I had an 8x7x9 cm area with lots of little spots of <1cm DCIS in it).  I am BRCA negative (although BART BRCA translocation testing is pending still).  I went for the BMX because I lost faith in the screening process for a variety of reasons and I didn't want to worry as much about developing cancer the other side.  The BMX isn't a get out of jail free card though - the risk of recurrence is still 1-2% lifetime (Mayo Clinic told me they thought it was <1% in the next 15 years).

Anyway, there are many threads that deal with the single versus double issue and it is really an intensely personal choice.  I will say this, I do not regret my decision but I miss my breasts every day.  I am not someone who derived a lot of sexual pleasure from them (don't get me wrong, it was nice but not essential for me) but I did enjoy them, they fed my babies and it has been a big adjustment for me to be without them.  I think if I could have kept my nipples (even if just on the prophy side) this would have been easier (I wasn't a candidate as my post pregnancy boulders were DD+)

I got a free TRAM reconstruction and I am very happy with the feel and jiggle and cleavage that I have (very close to what I had in my early 20s) however I had some significant complications that have required that I switch surgeons and I also have to have several more surgeries to get everything "right."

If you are at all interested in the possibilities of flap reconstruction, there are some good websites that can at least show you what is possible, even for those of thin build:

www.breastcenter.com, www.drmarga.com, www.diepflap.com to name a few (full disclosure: Dr. Frank DellaCroce in NOLA has taken me on to fix my first PS's mistakes).

Take care, you have come to the right place - the women on these boards are amazing - I wish I had known to come here earlier!  take care... 

Hi... I too had nearly exactly the same diagnosis you did (including an almost 9cm length of microcalcifications, which included a 4.5cm lump), and MRI also showed an area of concern in the left (non-DCIS) breast, although biopsy showed that to be benign.

I opted for a lumpectomy, which (in spite of the huge chunk taken out of me) has been amazingly cosmetically decent-looking. (I was a B/small C cup though so granted that may have made a difference.) 

Unfortunately, even after a re-excision I still have a few small micro-calcifications left. I'm going to have them biopsied and if they're DCIS, I guess I'll have to do a unilateral mastectomy -- but I will DEFINITELY do nipple-sparing (I'm sure a reconstructed nipple is great for many but I wouldn't be able to emotionally deal with that), and I plan to do micro-fat grafting reconstruction with Dr. Khouri in Miami if at all possible. (It basically uses your own fat to reconstruct a breast -- so, no tissue taken from other parts of the body, no implant, and best of all, no sensation loss! All three of those are kind of biggies to me.)

I personally wouldn't consider a prophylactic bilateral, mainly because I feel I know why I got DCIS at such a young age (I'm 39; was diagnosed at 38) and have reversed the factors that caused it. Plus, I want to have a baby if at all possible, and if I am able to, I absolutely intend to breast-feed. I know that's not an issue for most women in this situation.

As for the fibrocystic stuff in my "good" breast, I started taking iodine (a supplement called Iodoral... Lugol's is also good) this past winter, and within three months, all the lumpiness had melted away. If you haven't looked into iodine yet, please do a search it here... it can reverse fibrocystic disease and ADH and prevent breast cancer. 

Deirdre makes an excellent point.  If you want to look into nipple sparing then you do need to schedule a consultation with a breast surgeon who actually performs them.  I will almost guarantee, as she said, that if they don't do them they will try to talk you out of them.  If you find one who does this procedure they will more than likely be able to recommend a plastic surgeon to do the reconstruction as it really is a team effort between the BS and PS to get a good result with the NSM's. 

I know in the beginning it can seem overwhelming to have all this information and options thrown at you.  If you have any questions please post and you can also send a private message to any member. 

mkoz- I had the same dilemma when trying to find a BS that specialized in the nipple sparing.  I decided that it was important to me and my DH finally found one in a town 2 hours from us.  It definitely was a hassle for a few months but definitely worth it.  I looked at it this way- 4 months of inconvenience for a lifetime of seeing the results I wanted in the mirror every morning.  Hopefully, though, your BS on Thursday will be able to give you the NSM right there if that is what you choose to do.  I what a hard time this is in the beginning while you're trying to figure everything out.  Once you have a definite plan in place you will start feeling much better.  Good luck to you this week!

Please be very careful about adding Iodine to your diet.  You should check with your doctor before you begin taking it.  Iodine can have some bad side effects and can cause lymph node inflammation.  There is no proven evidence that Iodine can reverse ADH or prevent Breast cancer, Iodine is used by the breast to produce milk, it is also used by the thyroid.  Taking Iodine as a supplement if you have thyroid issues or are taking other medication can be dangerous.  Your doctor can do a simple blood test to see if you are lacking Iodine or any other vitamin and if so can advise you exactly what to take.

mkoz, fat grafting is already done routinely to fill out little dents etc. as a result of surgery, but Dr. Khouri in Miami has been doing micro-fat-grafting to construct entire breasts. It's no longer in the experiment phase. Check out the thread on micro-fat-grafting in the Reconstruction forum for details.

mea5, are you eating kelp in food form or taking it as a supplement? If the latter, what is the amount? The US RDA for iodine is woefully insufficient (it was established as the amount to prevent goiter -- an insufficient amount to prevent thyroid and breast issues etc.). Actually there have been a number of studies done that show ADH and fibrocystic disease are reversed with iodine... go to pubmed.com or a similar site and search "iodine and breast cancer." But, it is indeed a good idea to clear it with your doctor before taking mega-doses. If you happen to be hyperthyroid, you don't want to start taking iodine without your doctor's supervision.

mkoz,

I was dx with DCIS on July 12 in my left breast.  My right breast was completely clear (as far as the mammo & MRI showed).  I'm 40 (will be 41 in September).  No family history of breast cancer.  I lead a fairly healthy lifestyle (never smoked, a runner for the past 15 years, eat fairly healthy...at least I try to most of the time .)

I chose to have a BMX.  For whatever reason...the choice of a prophylactic BMX was not difficult for me.  And the funny(horrible?) thing for me was - the decision was more based on symetry & balance for cosmetic reasons.  I just figured - if it was necessary for me to have one done...why not have the other done at the same time.  I was a full "D" all my life.  I always hated my chest. Being a runner - I always felt they were in the way. Maybe that is why the decision was so easy for me.  Not only did the BMX take the worry out of always wondering if I would face DCIS down the road on my right side.  But I'm also hoping that my decision will help me to mentally heal quicker as reconstruction will be on both & will give me a balanced look...and give me the opportunity to choose my size (I'm thinking full B if possible or a small C".)  I had my BMX on July 30th & am in the recover/reconstruction process with tissue expanders.  I am SO happy that I chose to do both.  Now I can focus on healing & am looking forward to the new year when the process of reconstruction will be complete.

 I wish you luck in whatever decision you choose.

Barbara,

The surgery was doable.  I think in all it took about 5 hours.  I had to stay overnight in the hospital.  I think my emotional state was harder to deal with than my physical state.  I chose to do all of this in a short period of time (the time period from my dx to my surgery was 2 1/2 weeks).  So emotionally - I had not had too much time to process it all.  I'm still working on it even now (I'm 2 1/2 weeks post op).  But am so glad I chose this route.

 As far as the physical pain...they offered a pain pump for my overnight stay.  I didn't use that too much as it made me queasy.  I did ask for some Percocet (which I've used before & did well with) & that seemed to help.  But my anxiety I think was the biggest hurdle for me to overcome.  I've never been one to take medicine.  But I've been giving myself a pass for this time period.  Strange that before all of this started I rarely took Advil & now I feel like I have a pharmacy in my bedroom!  I have Percocet for the pain (which I was able to wean myself off of after about 5-6 days & started with Extra Strength Tylenol).  I have Xanax for the anxiety (which I've only taken a couple of times since the surgery).  I have Valium for a muscle relaxer & Zofran for nausea.

I've been walking every morning since about 4 days after the surgery.  My PS said NO exercising for 6 weeks - but that walking was fine.  I started off with about a 3 minute walk up my block.  I am now walking 2-3 miles each morning.  It really helps with my mood as well as my digestion!

 The tissue expanders I have are not the most comfortable things in the world....but they are not unbearable.  I just can't wait for the final surgery for the implants.  My PS says that's about 4 months away.  I can't wait to ring in the new year!

 Hope all goes well!

I chose BMX because on the MRI the non cancer breast had 4 suspicious areas that didn't show up on the mammogram or ultra sound. Granted MRI tends to give false positives and at the very worst there might be 2 pre cancer areas (according to my BS) but since I have such dense tissue I would be required to do biopsies on these every year. Considering they just found this 6-7cm tumor in the other breast I know that my tissue is very dense. I too an A cup.

BTW we didn't even biopsy this suspicious breast. We are doing a sentinel node biopsy at surgery though.

I also don't want to go through all this again. Surgery, chemo, radiation, drug theropy and reconstruction. I'm 49.