May face mastectomy for DCIS, what to expect?

Dear Prin-

Just a few things- you will lose your nipple because the breast is a series of ducts- everything is connected. I lost mine and I look at a 4inch scar everyday. Skin sparing surgery may be an option for you (crosses fingers).

You also might have to go for a PET scan and sentinal node imaging before surgery.

For me personally if I hadn't chosen to do reconstruction and didn't have to go through chemo I would have been physically fine 2-3 months after surgery.

From what I have read you need to be off chemo 6months to 1 year before considering getting pregnant.

Prayers and good thoughts to you.

GOOD LUCK!

I have to respectfully disagree with RegulJ.  It's not yet definite that you'll have to lose your nipple.  It will probably depend on:

1) how close the DCIS is to the nipple - some surgeons insist on the DCIS being at least 2cm away;

2) how large your breasts are - the larger they are, the harder it will be to keep the nipple b/c without breast tissue there may not be enough blood flow through the skin to keep the nipple healthy.  Since all the breast tissue will be gone, the blood supply from the tissue will be gone, too.  All that will be left to keep the nipple alive is blood flow through the skin.  If your breasts are large, blood may have too long a distance to travel to get to the nipple....it might not survive.

3) whether you already have scar tissue that will block blood flow through the skin (blood supply through the skin becomes a critical issue)

4) I'm not sure about this - but maybe whether you want to do reconstruction, and what kind of reconstruction you want to do - that might be important also.  With the tissue transfer surgeries, blood flow will eventually return to the skin from the transplanted tissue, this will never happen with an implant.  I'm not sure if that matters for nip sparing, but it might.

5) Your surgeons preference.  Some surgeons just don't believe in it.  On the other hand, some try really hard to keep it.

6) I've also had breast surgeons say they could do nipple sparing and then had the plastic surgeon say no, it can't be done - b/c my breasts were too large.  In the end I didn't have a mastectomy, so I'm not sure how it all would have played out.

It's worth asking about.

edited to add:

They will probably check your lymph nodes, because it's too hard to check them after a mastectomy (maybe impossible).  Ask if they'll do a sentinel node only, how many, etc.

If you have DCIS only and no evidence of invasion is found, you will NOT have chemo.  So don't worry about chemo and pregnancy at this point. 

Princess - big hugs to you! I'm in a very similar situation (DCIS, but very, very badly want to have a baby ASAP).

What sweatyspice said above meshes with what my doctors have told me. My surgeon had NO qualms about doing nipple-sparing but did mention there is the small possibility that I will lose the nipple anyway. I am not large-breasted so I'm thinking positively that that will not happen with me.

I turned down sentinel node biopsy (with DCIS, it's not needed unless there is a microinvasion).

I also turned down Tamoxifen (you're probably not at this point yet, but if find out your DCIS is ER+ -- estrogen receptor positive, your doctor will try to put on you Tamoxifen -- DON'T DO IT if babies are in your future -- PM me if you want more info).

Your doctor may have you do genetic testing because of your age (young women with bc are usually tested for the gene), and if you test positive, they will try to convince you to do a bilateral mastectomy. I didn't get tested and would refuse a bilateral mastectomy anyway at this point in my life. I firmly believe breastfeeding is in my future and I will NOT have my one healthy breast chopped off just because of fear! (I might think differently if I already had children and was past menopause.) Don't let your doctor scare you into having bilateral unless you test + for the gene and understand all the options/risks etc.

As SS said, with DCIS, you won't need chemo. Assuming you turn down Tamoxifen as I did, there's no reason to wait x number of months to try to conceive. I personally plan to start trying as soon as my mastectomy is done!! I'm almost 39 and have no time to waste!!!

Finally, one other little warning that my doctors never told me about... many women lose sensation in their breast after a mastectomy (as in, can't feel anything against their skin). That freaks me out more than the mastectomy itself, and so I'm asking my doctor to do the minimally invasive kind of mastectomy possible. Yes, I want the DCIS out, but I don't need inches of healthy breast tissue hacked out too. I'm hoping that will minimize the loss of sensation and that I'll be able to someday feel my future baby resting against my bosom.

One thing every woman needs to figure out is her risk tolerance. Some women have low risk tolerance so they chop off both breasts and do the maximum that conventional medicine recommends. I personally have a higher risk tolerance (mainly because I believe diet and lifestyle factors can affect your risk of future recurrence more than currently-available drugs)... but also, the idea of being childless is far more devastating to me than the idea of getting invasive cancer down the road. So, I want to do the most conservative thing treatment-wise now, if it means maximizing my chances of having a healthy baby and being able to breast-feed and feel my baby snuggled in my arms. Other women have different priorities and different levels of risk tolerance. Bottom line, you have to decide what's important to YOU and articulate that to your doctor.

I sure wasn't given the option of turning down a sentinel node biopsy, and thank goodness I had it! I had "only" DCIS but the micromets were in the sentinel nodes. I Wouldn't have had chemo and would have carried on as normal after my MX not knowing that those cells were in there ready to go wherever they wanted.

I do not know anyone who has feeling in a reconstructed breast. I belong to two BC groups and we talk about that a whole lot. I truly believe that's why women grieve after a MX, not because they don't look like they did before, but because they can't feel like they did before. That is why I could still grieve four and a half years after my surgery. I could, but I don't. I miss the feeling in my breasts terribly, but when I hold my little grandson I am so happy I'm here to see him and hold him and enjoy his every move that I can only be happy. The absence of feeling also forced me to learn to talk about all sorts of difficult things with my husband.I guess we are stronger for it, although I would rather have learned how to do that for different reasons.

Hi, I was reading this string and had some thoughts. 

Princess, are you sure it is DCIS?  You should definately get the BRCA test.  I think it is important to keep in mind that the testing you are going through is, unfortunately, normal for the b.c. diagnosis.  The up side is that all of the information gathered can only help you know exactly what you are dealing with so that you can make the best treatment decisions for your long term health.

Crunchy...if someone is BRCA positive, it means that the woman is in that 10% population of women at stratospheric risk.  While no doc will force someone to do a mast, one should make themselves very aware of the potential health issues down the road with a BRAC positive diagnosis. 

The sentinal node biopsy is done during surgery.  If the doc is recommending a sentinal node biopsy, just do it.  If you are node positive, even microscopic, you would want to seriously consider chemo.  If it has traveled to the lymph nodes, who knows where else it could possibly have travelled to.

If it is DCIS, it is typically located throughout the milk ducts (not just confined to one particular tumor mass) and that may be why your doc recommends mast. 

Crunchy...I am so sad that you are using the harsh term 'chop off both breasts'.  If you are looking to scare people, or yourself, you have probably succeeded.  No woman chooses to deal with this disease or EVER wants to have to consider mast. or any other treatments that would alter their bodies.  The reality is that we are in the group that has to make these difficult choices.  I think it's wonderful to want to be a Mom and have the experiences that every woman is entitled to.  But, the fact is that with breast cancer involved it can change things and we have no choice but to take care of ourselves first so we can be around to be with those that we love and the babies that will come. 

If you are afraid of all of the bipsies now and have breast sparing surgery, be prepared for alot more biopsies and trips to the docs down the road.

Having gone through mast myself, I can offer some insight as to what to expect.  My docs gave me the choice of lumpectomy followed by radiation, single mast. or bi-lat mast.  It was NOT an easy decision.  I chose implants (instead of tram flap) and had the bi-lat mast and reconstruction in one surgery.  I am ER+ 90%, and since my cancer was ductal, both nipples went and my surgeon was able to save alot of skin.  When I woke up the pain wasn't really that bad and I had 2 breast mounds as my ps had already filled my expanders with 200ccs each of saline.  I had drains in for 2 weeks, they didn't hurt, just uncomfortable.  I am exactly 4 weeks to the day since my surgery and am healing very well, drove for the first time the other day and have been going for short walks to get my stamina back.  I don't know about chemo yet, (that's a whole other can of worms) but if it has to be, then so be it.

Yes, I won't sugar coat it, I have numbness on my breast skin.  It is not 'awful' and it has gotten better with time and a'lthough the doc says I will always have some, I can learn to live with it.  It feels different but I can definately get used to it and live with it.  The worst it feels right now is that it feels sometimes like it would if my bra was cockeyed.  It can't be helped because the nerves are affected when the breast tissue is removed.  The ps can give me nipples later, but I don't think I will.  I just simply have a thin scar across each breast and a little scar under my arm where they took the lymph node.

I don't 'grieve' about my breasts and my honey is supportive in whatever is best for my health and us growing old together, and we could already talk about anything anyway.  I was worried at first about intimacy, etc., but there are also other ways of enjoying intimacy.  (my goodness!!  The breast isn't the only intimate zone on my body!!)  My breasts never defined me or my self esteem.  They were cute, but they were diseased and threatened my health.

Bottom line for me is that my prognosis and long term health was the most important.  Of course I was a little sad to see the girls leave, but, they were diseased.  I was not willing to take the chance of the disease coming back if I did minimal surgery, but that is me.  No, my new girls are not ever going to be the same as they were, but when it is all done, they will be good.  It is a new beginning for me.  I have accepted it and am moving on.

Princess, the best thing you can do for yourself right now is hit it head on and gather all of your data.  Don't hesitate to get second opinions if you desire.  Take your husband or significant other with you to your appointments to help remember and take notes so you can remember information that will help with your decision.  Consult with your obgyn about your desire for a baby.  Learn your options and think about them and their consequences carefully.  Keep away from negativity and negative people who want to scare you and tell you what to do.  It is your body and your decision alone.  Get all of your data, ask the questions you need to ask (by the way, no question is silly) and get the tests done that you need.  It is not easy, but you will come to decide what is best for you.  When you make your decision, accept it and look forward.  Don't question it or look back.  Having a good attitude and finding joy where you can has ALOT to do with how you deal with it and recover.

I wish you all the best.

I would suggest having the SN tested if you're getting a mx. Once you've had the mx, then that SN can't ever be tested again. I asked my surgeon to do it--I wanted to be sure even though it "was only DCIS." The node was clear, so it gave me more assurance. I had no problems afterwards either with swelling or movement, etc.!  I would do it all over again!!

Princess-- I'm glad your husband is now on board with the situation-- that's stress you don't need right now.  Your breast surgeon at GW may have a plastic surgeon she likes to work with already at GW-- . At Georgetown, my surgeon and Spear always work together-- it just made it easier to schedule two busy doctors and an operating room all in the same day. It is a long procedure, if you do a MX and immediate reconstruction the same day.  I doubt the dr. will keep the nipple. On my DCIS side I lost the nipple-- it's too risky to keep. I did both sides because I didn't want to take tamoxifen and I'm just a constant worrier. But some women do a single MX and still don't take tamoxifen-- all depends on how you view your risk levels and what you can tolerate.  The advantage of the tissue expander is that when I woke up I had a "mound" (they fill it at the time of the surgery)-- it sounds strange but it helps ease the emotional trauma of the surgery to still feel like you have something there-- and a few months later you have an implant and a tatoo of an areola/nipple-- I know a lot of women forgo reconstruction-- I was 43, married, already body conscious, and this was right for me. Physical therapy will help you with your pain and range of motion.

Before I met with Spear, I had been warned that he's a bit odd-- like most surgeons, thinks he's God's gift-- and he doesn't waste time with you-- but his nurse is fantastic-- she answers all of your questions (she held my hand all through the process-- even as they wheeled me into the OR)-- all of his staff is so kind-- and after a while he grows on you-- plus he's a genius when it comes to reconstruction). Whether you use him or another PS, be sure to see examples of his work, and get names of patients willing to talk to you. Spear had a list and I called them-- it really helps to talk to other women for details and how happy they are (or not) with the results.

Before anything else, consider the BRCA test. Even at 43 my BS had me do the test (and I have a 4 yr old daughter so I needed to know for her sake). I was negative but still decided to do the BMX. You said you had an MRI-- I'm assuming it was of both breasts?

Talk to everyone-- your ob/gyn, your BS and PS and an oncologist (you will need to meet with one, no matter what your follow-uo is), and let them know about your concerns  regarding pregnancy.   But before anything else, you need to take care of yourself and get rid of the cancer.

-- Julie

argh, my browser won't let me cut/paste but I just want to say I think those of us on the fence with our options ought to read Limegreen's post and print out for re-reading the part about our breasts being diseased and not the only intimate zone of our bodies.  Sometimes its hard to remember that but its, IMHO, oh so important.

Otherwise, I don't understand why someone would turn down a sentinel node biopsy if their surgeon recommended it.  It seems, well, sort of ostrichy to me.  Wouldn't you want to know if your cancer has spread?  Well at least I would.  I want to be there for my kids as long as I can.  This is why I have conceeded to the recommendation to do radiation--because the chance of a reoccurance that is invasive is just not something I am comfortable with.

Crunchy, while I realize that sensation is important to you, both plastic surgeons I spoke to said that leaving breast tissue could make it much harder to get a good result--as viewed by the patient--with reconstruction.  Fact is, you have sensation all over your body.  If I was going to worry about sensation, I'd be much sadder to lose the sensation of holding my child's face next to my check than I would holding my child next to a bad boobie.  You can be cheek to cheek with your child for a lot more years than you can hold them next to your breast AND, at least in US culture, thats a contact pretty much reserved for parents and children or between lovers, just like contact with breasts.

Princess,

I cannot speak for others, but only my experience.  I had a mx on my left side due to extensive DCIS.  I was an A cup.  The area for me that is now without sensation is just my "boob" (I had tissue expander and then silicone implant - I kept the same size)  There is an area around my back that is numb, but it is minor.  I think, to me, that it feels like I was given a shot of novacaine.  As to arm strength, I think I'm at 90 - 95%.  If you have reconstruction the same way that I did, the implant is under the pectoral muscle.  The muscle flexes over the implant when picking up heavier items (cases of soda, etc.).  I'm almost at my 3 year mark and doing well.  I do have phantom itches, but it passes.  You will have problems at first with your range of motion, but doing the exercises helps tremendously.  I actually had a "frozen shoulder", but it resolved and now I have complete range of motion.

Thinking of you and sending you good vibes.

Trish

I wanted to also agree with mosts of the above posts. I don't want to repeat all the good advice that you received except to add on to a few things.  First, what Sweatyspice said about the nipple is absolutely correct.  My DCIS was far away from the nipple and I talked my plastic surgeon and breast surgeon into keeping it because I thought it would somehow make a mastectomy easier to take. They both were kind of skeptical about doing it because of my large breast size, but I was adamant on keeping it if I could. Well, they were both absolutely right. My breast surgeon pretty much dissected things during surgery underneathe the nipple because they have to check to make sure things are clear and then they get rid of everything underneathe. The blood supply didn't take completely, I dealt with a severe infection when some of my nipple got infected and necrotic.  It took almost five months to heal.  My PS salvaged most of it, but if I had to do it over again, (which I did in a prophylactic), I wouldn't even choose to save it.  There is no sensation and PS do phenomenol work in recreating them.  If you are small-breasted, it is a different story.  Secondly, if you are going to have a mastectomy, please do the Sentinol Node biopsy.  As everyone else mentioned, once you have a mastectomy, you cannot go back in and do it. If a microvasion should appear, there is no way for them to do a sentinol node once you have had the mastectomy.  Then you have to remove all of your lymph nodes. They only remove a small amount of nodes and most women do not have problems afterwards.  It is a completely different story if you are doing a lumpectomy, but why take that chance if you are doing a mastectomy?  Also, if you are doing a mastectomy because the DCIS warrants it, why would you leave inches of tissue behind?  If that was the case, then you would be opting for a lumpectomy.  I personally have never heard of a doctor that does a mastectomy and leaves inches of tissue behind.  And  yes, I was one of those people that took off my  healthy breast even though I was BRCA negative because I saw my mother die of an advanced stage of this disease and couldn't handle it.  It was a very personal and difficult decision, and I take offense to anyone who would put it as "chopping them off" for peace of mind