Diagnosed w/DCIS yesterday

Hello, Robyn.

You have definitely found a good place.

Your doctor should discuss the characteristics of the DCIS area.  Here's a few questions to ask:

What size is it?

Is it in one area, or is it multifocal?

What is the grade?

All of this information will be on the pathology report, so make sure to get a copy of that report.  I also asked for an MRI because I wanted extra confirmation that the tumor was only in one area.  You might also want to ask about their recommendations about future treatment such as radiation or hormonal treatment.  Although the surgeon does not lead these future treatments, this information can help you make decisions about surgery.

I chose a lumpectomy.  The surgeon told me that I should have radiation if I chose that surgery.  Some women strongly prefer to avoid radiation and choose their surgery accordingly.  It's a very personal decision, and there are no right answers for everyone.  I'm sure that others here will help you with more information about reconstruction.

Warmest wishes.

I have to rush off to work (ruining a perfectly lovely holiday weekend) so am not thoroughly reading the posts above, though I'll try to do that when I come home tonight.

Just wanted to mention that you won't know about genetic markers at this point, that's a blood test and the results take 2-3 weks to come in.  You should talk to your Dr about it, who may refer you to a Genetics Dr to do the blood test.  (Some places seem to require a consult with a Genetics person, some places don't.)

Definitely get a second opinion - actually a few second opinions.  I'd recommend getting a second opinion from a surgeon who specializes in breast cancer surgeon (breast surgical oncology). You should probably have your mammo/ultrasound/MRI films etc looked at by a second set of radiologists and your pathology slides from the biopsy looked at by another pathologist.  Try to use people who see a lot of breast cancer cases.  Here's a list of NCI - designated Comprehensive Cancer Centers: 

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

I'm a fan of going to one of those centers whenever possible.  

Get copies of all your reports, and learn what all the stuff means.

Find out how big, how many, how aggressive (Grade 1 is least, Grade 3 is most, Grade 2 is middle)....are you Estrogen/Progesterone sensitive (those tests were probably done already and should be on the report).....

Bear in mind that the term "oncologist" generally refers to a medical oncologist (though there are also surgical oncologists and radiation oncologists).  For women with DCIS, all medical oncologists generally do is prescribe Tamoxifen pills if you're Estrogen sensitive - and that's junping a bit ahead in your treatment....BUT if you'd find a consult helpful in deciding between lump & mast, go ahead.  They can also help you understand the recurrence risks with your particular pathology....

Broadly speaking, your options are lumpectomy + radiation (plus Tamoxifen if you are ER positive) or mastectomy.  When you know more details you'll start to get a feel for what makes sense for you. 

I ended up with a significant and very non-standard lumpectomy surgery because I couldn't handle the idea of mastectomy.  Mastectomy was "standard of care" for my case.

If there are support groups in your area, many women will be generous enough to take you in the ladies room and show you their reconstructions. 

Perhaps most importantly, please remember that this is NOT an emergency. You do have to take care of this, but you don't have to rush into a decision.  You have time to learn about all this crap and figure out what makes the most sense for you.

Gotta go to work now...... wishing you the best.

Just getting home from work plus fireworks.  Hot as hell in NYC.

Anyway....

As far as whether you can go to ANY plastic surgeon (financially speaking), that's a question for your ins co. and the billing manager at your PS's office.  Make sure you go to someone who has a specialty in reconstruction.  As a rule, you DO NOT want to go to someone whose practice is primarily cosmetic (though of course there are exceptions: there are a few who do both cosmetic and reconstruction well, but just make sure whoever you choose is excellent at recon.)

Since I didn't have a mast, I don't feel comfortable answering questions about timelines for TEs and exchange surgeries, etc.  In addition to whoever else jumps in here, you might want to post in the reconstruction area of the board.

I do want to say that there are choices in mastectomy.  You can do the TE and implant thing, or you can do what are called "autologous flap" surgeries - where tissue from an area of your body - typically your belly fat but can be other things - is removed and then re-stuffed in your breast and a blood supply reconnected.  Those are longer surgical procedures and a longer recovery, but some women prefer them to implants.  I'm not going to get into the why right now, if you're interested I can try to explain - though I only came close to going through with it; while I had a lot of consults and did a lot of research, I can't speak from actual physical experience.

And there's also the "one step w/Alloderm" surgery.....another option 

And are you a candidate for a nipple sparing mastectomy?  Another thing to find out.... 

Be aware that you will no longer have sensation in your breasts following a mastectomy.... 

Timeline for mast: Well, first thing is - would you want to do the mast and recon in the same surgery?   Then you need to choose both an oncological surgeon and a plastic surgeon who you like and trust, and who will work together.  And that your ins will pay for.  (Unless that's not an issue.)  I found picking a dream team quite difficult.  After you pick your team, then it's up to how popular they are, and how complicated your procedure is (how much OR time they'll be requesting) in terms of how quickly they can schedule you.  Ex: A TE surgery is significantly shorter than a DIEP surgery, so TEs tend to get scheduled more quickly.

All that said - you really should talk to several reconstructive PSs and get a feel for what's possible and what you might prefer.

Timeline if you have lumpectomy - well, however long it takes you to decide that's what you want to do, then they schedule it (prob a few weeks to get you in the schedule), then typically 6 weeks from surgery to start of radiation, then typically 6 weeks of daily zapping M-F.  Then you're done (except maybe Tamoxifen pills for 5 years).  So....let's say probably 4-6 months from now till the end of rads.

A guess at the timeline for a mastectomy and flap recon surgery is .... prob over a month to fit in the schedule, then about 8 weeks recovery...then you're done.

A guess at the timeline for TE....prob a few weeks to schedule,  I think it's about a 2 week recovery, I think expander fills go on for something like 3 months, then you wait another month or so (?), then you have the exchange surgery.   So a longer process. 

In either reconstruction, if you don't do a nipple sparing mastectomy and you want nipples, they will have to be created in a followup surgery, or tattooed (also at a later date).

It's not uncommon to have revision surgeries with any recon procedure.  Your breasts will be the imperfect creations of your plastic surgeon, and they may need some tweaking.   

I'd say .... for a mastectomy and reconstruction you're probably talking about 6 months to a year in total.   But if I'm wrong, I'm certainly happy to be corrected by women who've gone through it!

Don't worry about having your daughters tested quite yet.  Get yourself through this first. 

Apologies for all typos, etc.  I was tired this am and I'm tired now....

HAPPY 4TH OF JULY!!!

BOOM!!!!! 

CRAP - forgot to add:  to MRI or not to MRI.....hotly contested in the field.  Some surgeons/institutions think it's overtreatment, some think it's reasonable.  (Personally, I think it's reasonable.)  I'll assume you haven't done one yet....the purpose is to do another imaging test to see if there's more cancer lurking.  Pro:  If there is more, it's better to know before you go in for surgery, so you can better decide what you want to do and the surgeon can better plan the surgery.   Con:  There are false positives on MRI, which lead to "unnecessary" MRI biopsies.  

Personally, I had an MRI which revealed a second area of DCIS which didn't show on mammo or ultrasound.  It changed the surgical gameplan entirely for me, but I'm happy I knew about it and was able to remove it.  If you KNOW you want to do a mastectomy, a MRI may be unnecessary because it's all going to be removed anyway.....but if you think you might want to do a lumpectomy an MRI might make sense....

OK, I REALLY need to go to sleep now!

Hi Robyn...I was diagnosed Nov. 6 of last year, shortly after I turned 50.  Like you, I have three children  - at the time, mine were 18, 17, and 12....my oldest had just started his first year of college.  My first surgical biopsy showed DCIS.  I then had to decide on a lumpectomy or MX.  I opted for the lesser, to take it one step at a time.  Two weeks later, I had the lumpectomy which was more like a half-breast-ectomy.  The margins were not clear, plus I found out that I had multi-focal DCIS (meaning it had "fingers").  The path report from the original biopsy showed my hormones markers - ER 90%, PR 60%.   Because the 2nd surgery showed it was multi-focal, I was no longer a candidate for radiation.  My BS sent me to an oncologist, and I also consulted with another (who I decided to go with).  He also sent me to a PS, just so I'd know all my options.  MY BS had an MRI scheduled, and found my right breast to be clear...so then it was up to me to decide on a unilteral or bilateral.  I opted for a bilateral for several reasons.  First, since I'm premenopausal, I was going to have to take tamoxifen for five years.  I head read WAY too much about side effects and risks involved and KNEW I didn't want to go that route.  I also knew I didn't want to go through all of this all over again, and go through lots of testing, checking on a frequent basis to keep an eye on the healthier side...so I opted for the bilateral.  For ME,. that was the right choice.  I also opted to NOT have reconstruction.

I had heard of , and read of, too many horror stories of extended pain, infections, failed reconstrucions, etc.....and knew I did't want to go through more and more surgeries just for this.  When I met with the PS, I didn't have enough tummy to do both breasts with the TRAM, and I didn't want to do implants.  That's the only type of recon. they do in my area.  I didn't want to travel to have this done either.

So, yes, I am flat.  It will be six months on Tuesday since my BMX and for the last month, I actually feel fine emotionally about my flat chest.  In fact, I forget what it was like to even have breasts.  My husband is wonderful about it...we've been married for 27 years, and it doesn't phase him a bit.  I have been able to find a lot of cute shirts this summer (for cheap) that look good with my going flat that don't make it look terribly obvious....so I am really quite good with this now.

As for genetic testing...yes, I did do this.  Out of my three kids, one is a daughter.  However, even sons have a 50% chance of inheriting the mututated gene, and could pass it on to their children.  Because I have so few female members in my family (no sisters, no girls cousins, maternal g'ma killed at age 40 by a drunk driver), I was a candidate for testing.  However, I do NOT carry the mutated gene.

As someone else, wait until you get done with everything witih you before you start worrying about all that.

As for recon....it's really a personal decision.  There are a lot of threads on this site about those of us who have chosen to stay flat, and those who have reconstructed - and all the different types of reconstruciont.  There is a really good book about reconstruction that someone recommended to me ...and I got it online.  It was really good, and very informative.  The Breast Reconstruction Guidebook by Kathy Steligo.  I ordered it from someone I found on Amazon and had it within a few days, so you might check into that.

Good luck.....just know that we've all been in your shoes.  And if we can help, let us know...and if you want to send me a PM, feel free to do so...

blessings...robin

You've already been given a lot of good information by previous posters but I wanted to add my 2 cents anyway. #1 reassure your family AND YOURSELF that your cancer is  100% curable / survivable. That means in about a year this will ALL be behind you.

#2 Don't be in a rush to make decisions. Your cancer is slow growing, if it takes a couple of months to get your surgery set up you will still be ok. The decision for a Mastectomy is permanent, don't make it quickly.

#3 and the most important I think - ONLY GO TO DOCTORS WHO ARE BREAST CANCER SPECIALISTS. I'm not saying your local surgeon may not do a great job - but really - don't you want the best for this. I went to MD Anderson, Houston, Tx  which of course I think is the best in the world, but I admit to being prejudiced But a Cancer center that can offer you breast cancer oncologists and surgeons and also plastic surgeons will coordinate your treatment and surgeries more easily.

#4 Look at this whole process as taking more than one surgery. I foolishly thought I could go in and have Mastectomy and reconstruction in one surgery and be done. I luckily was able to convince my plastice surgeon to do reduction on one breast and reconstruction of other at time of initial surgery (10.5 hrs. on table) but now I'm going back for touch up and nipples.

#5 I was afraid of the pain - I know it sounds dumb - but I had never had major surgery before and I expected this horrible pain. Little did I know about modern DRUGS! Yes, I was sore and it felt like a truck had run over my chest and abdomen ( I had flap, fat taken from stomach done also) but it was not the kind of sharp pain I had expected. I gleefully took all offered drugs (and I'm someone who hardly ever even used aspirin) as well as having a pump. The first week is rough (as is any surgery) but honestly it was all up hill after that. I do recommend a good lounge chair for sleeping the first week.  I was surprised when a previous poster said it took 6 months to get back to normal. I went with my husband on a camping trip 5 weeks after surgery (even though I still had a drain) and by 3 months I was feeling good. Of course your treatment schedule will affect all that.

#6 I wouldn't wish cancer on my worst enemy - but I've learned alot about my self, my husband and my friends in the process. It's an opportunity to grow, and you will. Wish you could get it from a book instead of this hard way - but blessings on you as you make this bumpy trip and know that as corny as it sounds there really is light at the end of the tunnel.

Sweatyspice is absolutely correct.  My original breasts were a bit over D cup.  My doctors made me make the decision about the nipple sparing, although my plastic surgeon wasn't too keen on it.  Within two weeks part of it became necrotic and I had a major infection for weeks.  Had to pack my nipple with wet and dry gauze for months.  My doctor was able to salvage some of it, and it will be touched up when I do nips and tattoos on my other side.  I decided to do a prophylactic mastectomy on my other side a year after the other breast was removed.  I totally did not do the nipple sparing.  Yes, nipple sparing works wonderful in some women.  However, if you are somehat voluptious, blood supply is limited and many women wind up with problems.  It is a personal decision, but I wish someone had told me the problems that I may have incurred before my surgery. 

It comes from the Breast Preservation Foundation's website.

NSM & SSM :  What to Ask Your Surgeon(s)

Questions for Your General, Breast or Oncologic Surgeon & Plastic Surgeon

1. Where and when did you receive your general surgery training?
2. Are you board certified in general surgery?
   If not, why not?
3. Are you in good standing with the medical board?
4. How many mastectomies do you perform on a yearly basis?
5. What type and percentage of types of mastectomies do you perform most?
   (types are: lumpectomy, traditional mastectomies, and skin-sparing mastectomies)
6. Are you familiar with and do you perform skin-sparing mastectomies?
   If not, would you please recommend a general surgeon who is, for a second opinion?
   If yes, how many have you performed?
7. Is there any reason why I would not be a candidate?
   (The main reason would be that breast skin is invaded. Note that skin is not the same as breast tissue! Or if the breast cancer is at an advanced stage. Read inclusion and exclusion section.)
8. What will the scars on my breast look like?
9. Do you have photos of your mastectomies to show me?
   If not, please show me a medical journal photo that resembles your work.
10. EXACTLY what skin will be removed?
    (If it is most of the breast skin, then it is NOT skin-sparing!)
11. EXACTLY where will the scars be located?
    (You may want to ask your doctor to DRAW the scars with marker on your body.) With a skin-sparing mastectomy, the marks MUST be drawn in a KEYHOLE pattern, (i.e. under the breast fold, coming up to and around the nipple.) A traditional mastectomy will be one or two long incisions across the front of the breast, leaving little or no breast skin.)
12. Who will do the marking for the incision? You or the plastic surgeon?
13. Can the plastic or oncoplastic surgeon do the marking?
    If not, why not?
14. If not reconstructed at the time of mastectomy, then what communication are you, the general surgeon, going to have with the plastic surgeon about the incisions placement before the surgery so you have the best possible cosmetic result?
15. Am I a candidate for immediate reconstruction (at the time of mastectomy)?
    If not, why not?
16. If I have future reconstruction, will the surgery leave my breast skin so I can have a skin-sparing mastectomy?
17. What plastic surgeons do you work with?
18. Will the plastic surgeon do the pre-surgical marking and determine the location of the incisions?
19. Would you be willing to provide me with the name of another general surgeon for a second opinion?

Questions for the Plastic Surgeon

1. Ask the questions above, making the appropriate substitutions.
2. Do not be shy to ask to see photos of their work, and for the name of a second opinion.

Hi there. I had bilateral MX with the intention of nipple/skin sparring. One side turned out great & on the other the BS did a scrap to test the tissue under the nipple. The results were cancerous so I lost the nipple on that side. I will have my last fill tomorrow with the Tissue Expanders and final surgery in Oct. It really has not been bad at all & way easier than I thought. I have seen many pictures of ladies from the funky TE stage to the implant stage, & they look beautiful. I would suggest looking into Dr. or Cancer centers that are doing the skin/nipple sparring & those who have had a lot of experience. Best wishes.

robyn- I got a message from WhiteDove asking that I write to you regarding nipple saving mastectomies.  I wanted to share with you my experience with my first surgeon.  She hadn't even told me such a procedure existed.  I found out about it my doing my own research.  When I asked her about it she was very adamant as well about me not having it done.  Then I found out that she was not even trained in the procedure (not all breast surgeons are).  There has been a resurgence in this type of mastectomy and most BS have not been trained in it.  I decided to consult with a BS who was experienced in the procedure to see if, in fact, I would be a good candidate for it.  I had to travel 2 hours from my home to find one but it was worth it.  She said I was an excellent candidate.  I had a NSM done in March and am very pleased with the results.

I would urge you to get a second opinion from someone experienced in NSM.  There are certain criteria you would need to meet to be considered and the only thing of concern I can see is the size of your breasts.  It is extremely difficult to maintain blood supply to the nipple when it has so far to travel.  Another criteria is your DCIS cannot be too close to the nipple.  But until you speak to someone who is trained, experienced and believes in this procedure I would not discount it if it is something you wish to pursue.  If I had believed my first BS my nipples would be in a land fill somewhere.  I am kind of taken aback, also, that your BS would discount your concern regarding your appearance afterwards.  As women, our breasts are an integral part of our femininity.  As a female doctor, you would think she of all people would understand that.

I just wanted to let you know that with DCIS you do have some time to educate yourself and to explore your options.  I was diagnosed in December and did not have my NSM until March.  

Some things you should know about MX, and NSM in particular, are that after MX you will more than likely lose all sensation in your breast.  In NSM you will lose sensation in your nipple.  If you have a NSM done by an experienced BS the rate of recurrence is exactly the same as traditional MX.  You are not putting yourself at a higher risk by choosing to save your nipples.  (During your MX, the BS will scrape the cells within the nipple and biopsy them.  If any cancer cells are detected the nipples will be removed at that time.  I have never heard of a single woman on here who has ever had that happened, though.  Since DCIS is cancer of the ducts, and all the ducts are removed during MX, there is no way for cancer to spread to the nipple after MX.  Breast cancer starts in breast tissue not nipples.)  There is a risk during NSM of necrosis where the nipple "dies" but, again, this is rare.  

Please don't get too scared when looking at photos of mastectomies on the internet.  Many of those were done years ago and they are much less disfiguring these days.  With NSM, my surgeon said that afterwards no one will even be able to tell that I had a MX which I think is pretty amazing.  Even in traditional MX's PS's can create new nipples that do look very real.  Some BS's will do the incision below the fold of the breast (as mine was) so eventually the scar will be barely visible.

As far as why you would need tissue expanders- some surgeons are now doing immediate reconstruction where an implant is placed during the same surgery as the mastectomy.  Most do, however, use TE's.  If you do find a BS that does NSM they will more than likely recommend a PS as it is definitely a team effort since the PS has to be specially trained in NSM reconstruction.  All reconstruction questions do need to be answered by them.

Also, as far as gene testing, from what I have read it's not considered necessary for DCIS but I would still consider it since you have children.  (Daughters are not the only concern as sons can also get breast cancer.)

Also, recovery time for MX seems to vary.  I think those that go into it being very physically fit seem to recover the quickest.  Also, the sooner you can be active afterwards the sooner you recover as well.  Most do say at least 4 weeks minimum.  The TE process usually takes about 3 months and then you have an additional surgery to remove the TE's and place the implants.  (They can also do reconstruction using tissue from other parts of your body instead of implants.)  The exchange surgery is very easy.  I was up and around in about 5 days.

If you would like any more information regarding NSM's please feel free to PM me.  I'm even happy to give you additional ways to contact me.  Good luck to you! 

Kate 

Hi Just wanted to add that there is the City of Hope in Duarte, near Pasadena. They have great oncological breast surgeons & PS that are experienced in reconstruction after cancer. Also, the two surgeons worked together, one did the MX & the other reconstructed after. The are experienced in nipple/skin sparring MX. I actually asked my BS what worst case scenario would be, would I loose all the skin? She said she cannot imagine that that is ever necessary now a days. I went into it with the goal of one side nipple/skin sparring & the other prophylactic. In surgery they did do the scrap under the nipple & there was too much cancer so I lost it. I am in the TE stage and everything from start to finish has gone better than I would have expected. Hope the info helps. City of Hope is worth a look. I live 4 hours north of there and would do the traveling all over again because it is such a great place. Will be thinking of you as you wait for your tests. Great advice from the ladies above