another Newly diagonsed DCIS thread

Hi Horseinaround, sorry to meet you under these circumstances!

Here's my opinion after choosing a bi-lateral with immediate reconstruction (which is FAR from immediate reconstruction IMO).. But first I want to tell you that we have all felt what you are feeling right now and I couldn't sleep after my many appointments - if I were to walk this route again the very first thing I would do is add a therapist to the list of specialists.. So many people will give you their opinions and although done in the best spirit it can really mess with your own decision process.  A therapist will help you focus and center on what is best for YOU coming from YOUR position.  Everyone's decision is personal and even if your DCIS matches someone else as far as the dx goes that doesn't mean you will arrive at the same treatment plan as they did.  That's why I always encourage someone in your position to seek out a therapist that hopefully has worked with women with breast cancer.   This will help with your decision making and I believe it will also help with your recover.

OK - so the mastectomy that you have decided on is it "nipple sparing"?  The reason I ask is that having your original nipple and areola will help your brain better accept this monumental change to your body.  Once I made the decsion to have a mastectomy I went looking for a doc who could do a nipple sparing mastectomy - unfortunately there was not a ps in our town, at the time, who could do the procedure.  If I had to do this again I promise you I would leave my home town to go to where ever there was a plastic surgeon that could do a nipple sparing.  The emotional toll is incredible (at least it was for me - and many of the women I have spoken to) and somehow if the original nipple and areola were intack I think my adjustment would have gone much smoother.  I am not prone to depression but I have to admit it took me 3 years to finally start freeing myself from the depression I fell under after my simple bi-lateral mastectomy (as if there is anything simple about it!).  Also, knowing what I know now I would only have removed the one breast and maintained a "watchful waiting" on the other breast.  As I said earlier there is an encredible toll that losing your breast can have on you and having one of my breast (though saging from nursing <grin>) would have been easier to accept (for me).

I was told that if I had a bi-lateral mastectomy there would be symetry  - symetry did not occur for me in the first surgeries!  I ended up having to replace my implants and have my pocket revised within a year.  You are right about the radiation on a breast that has an implant in it - there are more problems with outcome and appearance, though some women haven't experienced any problems at all.  So another question might be (if you decide to look at radiation) how much radiation they might use and if there is radiation treatment that has less exposure.

You might also want to have your tissue slides reviewed by another pathologist in another facility.  Too often a local hospital will not have the experience of a breast cancer center.  I had mine re-read (for a second opinion) by Vanderbilt, but there are many other excellent facilities out there.   The second opinion will give you a better "comfort" level with your dx.  To do this you just need to call your bs and ask him/her to submit your tissue slides for review to (insert you facility choice here), also have your tissue tested for HER-2- if you haven't already had that test.   And please always make sure you have copies of the written report so you can refer back when other issues come up.

Again, I'm so sorry you have to go through this and I hope you have a better outcome than I did.   And I don't mean to make your head spin - with a therapist you will have a better chance at taking each piece of information from others (including me) with a grain of salt and arrive at a better decision for YOU.  Best, Deirdre 

Hi Horse-n-around~

First of all welcome!  I say this because this website support group will be your godsend!  It has helped sooo many to get through this journey of uncertainty, fears, etc.  I joined the BCO (breastcancer.org) over a year ago.  I was diagnosed with DCIS & was given an option of lumpectomy/radiation or a mastecomy/reconstruction.  With much research that was available to me at the time I chose to have a single mastecomy with an immediate reconstruction...no radiation.  I was told that reconst. on a radiated breast can very difficult.  I had a single since my diagnosis was in it's earliest stages (stage 0).  I am very happy with my results.  I love the fact that I still have my "healthy" breast with nipple intact vs. my MX side without a nipple.  The only regret is that I did not join this support group earlier.  I found this website AFTER I had my surgery so I had no clue that a nipple sparing mastectomy was available.  Had I known I certainly would have inquired about this procedure.  I'm sure this procedure is not for everyone so you would need to inquire.  Women who have had this nipple sparing mastectomy have an advantage of coming out looking pretty "normal" after the reconstruction.  Anyway, I had immediate reconst. on my MX with a silicone implant & had my healthy side augmented to match.  I was a 36 nearly B before BC (breast cancer) & am now a 36C.

Whatever you decide on...do check out all resources.  Check out all the forums here. 

NAE

Lots of good responses.  In the end we each have to decide what's right for us, and that's what you see in the variety of approaches that other women have taken.  I had to have a mastectomy (too much DCIS in a small breast) and chose to have a single mastectomy.  I also had an implant added to my 'good' breast.  Reconstruction is not a simple or quick process; I was lucky that mine went very smoothly but it's important to go into it knowing that there is about a 40% - 50% chance that you might need revisions (those are the stats from the implant companies themselves).  And once reconstruction is completed, often there are little things that can cause problems - I'm 5 years past my surgery and I still have on-going phantom itching, I often get muscle aches around my 'foob' if I do something strenuous, etc.. None of these things are major problems but if I'd ever thought that a reconstructed breast would be trouble-free (as compared to natural breast), I would have been wrong.  There's no question that I think about and worry a whole lot more about my reconstructed breast than I ever do about my natural breast.  So I'm grateful that I don't have the same issues on both sides and I'm very glad that I had the single only. But that's me.  Others are happier to have bilaterals. 

One thing that you need to keep in mind as you make your decision is that although usually radiation isn't required after a mastectomy for DCIS, this isn't guaranteed.  I've been on this board for 5 years and more & more, I am seeing women who have mastectomies for DCIS who still get radiation.  The issue is the margin size near the chest wall - recent studies have shown a significantly higher recurrence rate after mastectomies for DCIS if the margins are too close and that's why more doctors are now recommending radiation.  In your case, with small breasts, if it turns out that your area of DCIS is larger than expected (and this is possible - there is no way to know the actual size of the area of cancer until it is all removed and clean margins are attained), then close margins could be an issue.   Have you had an MRI?  If not, I'd recommend that you ask to have one. No screening tool is perfect at determining the size of the area of cancer but MRIs have been proven to be more effective than mammos at showing the whole area of DCIS. Certainly that was the case in my situation.  My mammo showed two distinct areas of DCIS; my MRI showed my breast to be full of DCIS.  The MRI was proven to be correct.  So an MRI might be helpful to you - and to your surgeon - to get a better idea of what's going on before you get into surgery.

Good luck with your decision.   

horse-n-around,

I just wanted to stop in and offer my experience...

I am almost a month out from a Nipple Sparing Mastectomy with immediate reconstruction, I'm 37 yrs old.  I went for a double because at the time I was treating LCIS/ADH, which are multifocal.  (even if it wasn't a situation that potentially affected both breasts, I still would have done a BMX, I have a strong family history).  In the end, I found out a couple weeks after that pathology forund several cms of DCIS in my LCIS breast & abnormal cell activity in my healthy breast, (dense beasts & DCIS didn't show on mamms, US or MRI).  I am now so GLAD to be done with all the worrying. 

Leading up to BMX I was edgy, but thought I was handling it well under the circumstances.  But now that it is over and I have 1-2% chance of BC, I am a different person, the weight that I was carrying around that I kind of just got used to feeling was heavy, and now I am focused on healing and tissue expanders/fills and I am a much lighter person. 

In a few months I should be nearing the end of the recon, of course there are always the chance of obstacles, but I choose to feel positive and grateful that right now is good and if there ever arises a setback, I'll deal with that then.  I am so impressed with the NSM, My nipples are healthy, pink and doing great!  I suggest if you are thinking about this surgery to discuss it with your Dr and compare with another.  Many times the success of saving the nipple is on the surgeons experience.  Kate was right about it being a more involved surgery, 5-6 hrs, I have the incsision under the crease and as I get my fills I can tell you that looking down at my nipples makes me feel like myself, minus the sensation, which is ok by me.

Whatever you choose, rest with the fact that you looked at all the angles important to you.  Good luck with your research and definitley check out the nipple-sparing mastectomy (NSM) thread if you are curious for more info!

Horse-n-around~

Didn't I mention you came to the right place!!!  I'm glad that you are getting feedback & hope that you find what you need to help in your decision.

NAE

Horseinaround:  When I was working with the genetic counselor I was told that although I had a history of bc because of my father it was the cumulative cancers in the family that really made me "high risk".  Originally I was told that I had a low risk because there was only the one other member that had breast cancer but here's the thing - if we go back even one generation not everyone in that generation had access to regular health screenings and so someone who was noted as dying with liver cancer (as an example) might have well had breast cancer but it had developed in met's before discovery so no one bothered to check a lump that had been there for 30+ years.  My father's family (Irish-Catholic) had 13 kids and within the group alone 1/2 (1 child died at birth) died from one cancer or another - so half of his family died of cancer, lung cancer, bone cancer, liver cancer, etc.. notably none were hormone related, but because this family was a faming family (in Ireland) they didn't go to the doc until and unless their lives couldn't go on without medical intervention.. So many of the cancers that were picked up could have been secondary to the primary and the primary cancer might never had been picked up at all.  So the individual who died of liver cancer (a non drinker by the way) could have had breast cancer that metastisized or uterine cancer, prostrate cancer etc.(note these ARE hormone related)  but they might not have seen a doc until they were very sick and so the original cancer wasn't picked up -the metastatic cancers were noted as the primary cancers.  What I am suggesting is that a bs or a ps can't really understand the complexity of the family cancer's without a genetic work up.. and when I had the genetic work up 50% of my father's family had died of cancers so my genetic counselor suggested a breast MRI, BRCA testing (neg) and that I have my ovaries and uterus removed.. I had the BRCA that was negative and the breast MRI which was the only test that could see the DCIS..  Not with a mamo, or a digital mammo or an ultrasound all done within days of that same breast MRI and all negative except the breast MRI.. This is incredibly complex and so my suggestions would be that with the cancers you have in your family it would be a good idea to get a genetic counselor and have a genetic map created.  My genetic map is now available for my kids (though I hope they NEVER need it) and it was helpful to me in making some of my decisions.  I will warn you that it is not the be all and end all as genetic markers are a relatively new science and although they are discovering new connections every day, that means that the one's they know of don't show the full picture - so be careful if you do get a genetic map to be a bit discrimatory about which pieces you use.. but it is a helpful tool used carefully...  If it is used to induce fear it's better off in the trash!  I hope this makes sense I'm on a drug that does tend to create confussion within my brain (just a natural anxiety aide) ...Best, Deirdre

horse-n-around, just a different suggestion here for while you are waiting--spend some time with your horse.  I couldn't have done it without my horse.  It helped me immensely.  thinking good thoughts for you.  Be very kind to yourself now.

Lizzie 

horse-n-around:  As Nedeza said, we're here to help you!  Sending thoughts of strength your way and will check back to see how you are doing.

Julie

HI Horse-n-around,

I have been thinking of you all day.  I am going to see the oncologist tomorrow.  I have been going on what the General Surgeon told me I would "have" to do or would be "offered" treatment.  I have been reading all this information and it is all conflicting in my head.  I don't want radiation, but I don't want BC again.  I don't want tamoxifen, and I don't want BC again.  I called a Radiation Oncologist today.  He said I could drop by after my appt tomorrow to visit with them. 

Glad you put your surgery on hold until you speak to an Onc.  It is okay to get a second opinion and I may do that too.  It all depends on what the Onc says tomorrow.

Hang in there.  We are here if you need us, and i know ya'll are here for me too.

horse-n-around,

Those diagnosed with DCIS are usually told that they have time to think about their options and make their decisions. A few weeks, even a couple of months is very unlikely to have any impact. I had DCIS in two places, already had a microinvasion of IDC (invasive ductal carcinoma) and after an excisional biopsy, I didn't have any clear margins.  Yet for a bunch of very good reasons, it took me another 2 1/2 months before I had my mastectomy. Nothing in my pathology changed; the wait had no negative impact at all. In your case, since you've had surgery with clear margins, you have all the time in the world.  So take the time you need to be sure about your decision.  Particularly if you are going to have the bilateral mastectomy (BMX), you want to be absolutely certain about the decision, because once it's done, there is no going back.  

Since you haven't talked to an oncologist yet, you should definitely do that.  The role of the surgeon is to operate; the role of the oncologist is to look at the total picture and help you put together the total treatment package, based on the pros and cons of each treatment specifically for you, based on your pathology and your risk level. I know that one of your concerns is about taking Tamoxifen and that's part of what's driving your decision.  I had a single mastectomy and fully expected that Tamoxifen would be recommended for me; I was totally surprised when my oncologist actually recommended against Tamoxifen. It took me a while - and a lot of research - before I understood his rationale and ended up agreeing with his recommendation.  

In the end your decision might not change at all; you might still decide that you want the BMX. If so, that's great.  You won't have lost anything and you will have gained confidence and certainty about your decision.  That's a good thing. 

Blondee, it's great that you are seeing the oncologist tomorrow.  Let us know what both he and the Radiation Oncologist say. I'm sure that there opinions will be helpful as you struggle with this decision, and as you said, getting a 2nd opinion can be very helpful too.   

horse-n-around,

Very simliar diagnosis here, with very similiar thinking. My mother also had uterine cancer and died young, at 42.  Since her death, I have known that if the situation came up, I would go to the absolute extreme, which I did, after careful consideration and consultation with various prominent BSs, Oncologists, and PSs.

I am 8 weeks out from the final transfer surgery. I feel very good-I won't say that the loss of my real breasts isn't on my mind every day, however I chose to look at this situation in a powerful light, and it has helped me tremendously.  I, like you, had small breasts to begin with, that did their job of breastfeeding 4 beautiful children..but eventually failed me at age 41.  I am now a perfect size 36B. I have no feelings of pain or discomfort, only numbness.  The surgeries were not as difficult as I anticipated.  Recovery was easy, minus the fact that I had physical restrictions.

I should note, the final pathology after BMX showed DCIS in two areas, in non consecutive slides...one size .2cm and one .4cm.  Very, very tiny. However, I wonder had I opted for lumpectomy, would it all have been removed?  Only one spot was shown in MRI, US and Mammo.  

 My risk tolerance is low and my anxiety very high. For me, the BMX was the right option. But it is a very personal decision for us all. I just thought I would let you know my perspective, and also let you know that you are not alone in your decision making.

Good luck, God Bless.

Maybe you could ask for a breast MRI while you are waiting?  That could take a good look at both breasts and it is almost considered "standard of care" these days..  It also helps the breast surgeon as well...  You might give it a try - it might help you understand the size - it might help...  hang in there!