Received DCIS Diagnosis - IT JUST GOT WORSE - Comments Invited

Hi, So nice of you to be here, searching for answers and opinions for your dear wife. It takes a lot to fight this disease, and it sounds like you are being very supportive and helpful to her. Well, as for me, I was dx with DCIS in my R-side, multi-focal, so lumpectomy was not an option. It was also very aggressive. Wanting to not only be "symmetrical", but also not wanting to have to worry about worrying about and monitoring my L-side, I chose to have bilateral (double) mastectomy, with initial recon starting immediately. Mine was the right choice, as when they examined my "good" L-side, DCIS was found in there also. I am very happy with the decision I made. So, just putting in my 2-cents worth, as to my own experience. It is a very personal choice, with all options examined. Hoping for the very best for your wife!!!!!

Blair, what your wife is facing is not unusual.  For me it wasn't the MRI, it was a second look - by my new surgeon - at my mammogram.  DCIS and the microinvasion had already been discovered in my right breast, I'd already had an excisional biospy with lots of dirty margins, and a right breast mastectomy had already been recommended. Then my surgeon looked at the mammogram of my left breast and sent me back for diagnostic mammogram. I knew there was a problem when they took about 7 or 8 films of the same spot. Within minutes the radiologist came out and said that there were suspicious calcifications on the left side too and I would need to have a biopsy.

At that point I assumed that I had breast cancer on both sides and I assumed that I would need to have the bilateral mastectomy.  But the biopsy proved otherwise.  No cancer, no atypia, no abnormal cells of any kind.  Just run-of-the-mill normal harmless calcifications, the type that 60% of women get at some point during their lives. No concerns, no on-going monitoring necessary. No wait and see if anything happens. Totally benign.  Nothing was going to happen.  With that news I happily went back to Plan "A", more confident than ever in my decision to have a single mastectomy only.  That was 6 years ago and everything has been fine with my left breast since then.

So don't jump to any conclusions.  It may not be worse at all.  It's a bump in the road on the way to surgery. And realize that what the doctor was doing was being thorough (except for the MRI on the good side only thing - too strange!) and in being thorough, he found something that might very well be nothing.  I can't tell you how often I've seen that happen to women who've come through this board. Because we've been diagnosed, our doctors are ultra careful about checking anything that might be a sign of a problem. Most of the time, it turns out to be nothing.  Hopefully that's what happens here.  And if that's not the case for your wife - if it turns out that her other breast does have cancer too, or maybe a high risk condition, then keep in mind that it's much better to know that now, rather than find out after she's had her surgery.  That's a different way to look at this news.  It might end up being a good thing, finding this out now, either because it is checked and found to be okay, easing any future concerns, or it really is a problem and it gets addressed now, in a single operation along with the cancer in the other breast.

As for HER2 testing, there's no need to ask for it now.  It has no effect on DCIS treatment except for those who participate in one of the clinical trials - there are 2 or 3 clinical trials going on right now related to HER2+ DCIS. The issue for those with DCIS is that at this point in time there is no good understanding yet about how HER2+ status affects DCIS.  Some studies suggest that HER2+ DCIS is more aggressive (just as HER2+ IDC is more aggressive) but other studies have shown exactly the opposite.  Additionally, right now the only specialized drug to treat HER2+ breast cancer, Herceptin, is not approved for DCIS.  So HER2 status on DCIS doesn't change anything.  Also keep in mind that hormone status - ER, PR, HER2 - could be different in each cancer, if your wife does have breast cancer in each breast.  Also, HER2 status can be different for DCIS vs. an invasive component, should invasive cancer be found.  That's where HER2 status is important - if any invasive cancer is found.  And it's the invasive cancer itself - not the DCIS - that would need to be tested.  

I agree with Beesie, please do not jump to conclusions, it may not be anything at all!! Really, it is not just a cliche when you hear people say that mris result in false positives (I know first hand)!  I NEVER ever wanted to have more surgery than was absolutely necessary but was willing to go through with tests and even biopsies in order to increase the chances of making an educated decision PRIOR to surgery.

My bs sent me for an mri on both breasts (and BRCA testing). Thankfully nothing more showed up on the "bad" left breast's mri, but something suspicious showed up on the mri of the "good" right breast. So then off I went for another biopsy -- this time an mri-guided biopsy of the right side. I didn't find this biopsy nearly as painful or bruising as the stereo biopsy I'd had on the left side, and thankfully the area of concern on the right side turned out to be benign. The stress of these tests and the waiting for results is so difficult, but I still believe that they are a necessary part of the decision-making process.  I welcomed opportunities to show my bs that lumpectomy was a viable alternative (he was fairly gung-ho for me to have a mx from day 1, then he started talking about bmx if the BRCA or mri results had potentially been different).

Hi Blairk,

I think you are wonderful to be searching for info for your wife. 

I used to be frustrated that the docs seemed to want me to make surgical/treatment decisions, when what in the world did I know about BC???  Heavens to betsy, they went to school for how many years and they are asking me what to do?  But...after several months of dealing with this, I realize it's because everyone is different.  Situations are different, preferences/beliefs are different. 

Yes, I would want to know her2 result of biopsy of good breast.  Can't hurt to have that info as you are making decisions. 

I knew about IDC in left breast.  They were proceeding with unilateral mastectomy, saw surgeon, plastic surgeon, etc. I requested an MRI of both breasts because I wanted all information before I made my decision.  MRI found a suspicious spot in the right breast.  Like some others, that's all I needed to know.  No biopsy, just take them off.  Pathology report post surgery showed DCIS in right breast too.  I had reconstruction at the same time as bilateral mastectomy and have zero regrets abuot that decision for me.  I've known others that felt much more comfortable with taking as little of the breast as possible.  Again, everyone is different. 

Good luck to you and your wife. 

This is such a difficult, stressful and emotional time for you and your family, but first and foremost for your wife. Whatever good advice and consolation you have gotten from these boards it is worth nothing if it puts stress on your marriage which will be under considerable stress from the bc diagnosis. You sound like an honorable man who is trying to do the right thing. It also sounds as if your wife has moved in to the driver's seat (one of your original concerns was that she wasn't even in the car!). Keep supporting her but let her do the driving. Caryn

I totally understand your wife's fear about them being angry.  I have an unshakeable belief that if I make waves I will pay the price while under anesthesia -- "she was SUCH a witch -- let's see about putting this where it hurts the most."  

 "They" hold all the cards while you are under anesthesia for hours.  I have concluded -- and this is ME-- that until such time as I find a team where the idea that they would do less than their very best because I was unpleasant, or, more likely my mother was unpleasant,  asked too many questions, cried (THAT still hasn't happened), etc., I'm out.

My first surgeon called me last Friday afternoon to tell me about the MRI results and said he would set up a biopsy for early this week. I threw 49 kinds of fits to get my MRI results, all of which I am sure were relayed to his office -- none of the four messages I left with four different people asking for a copy of a two page report were returned.

I have yet to hear from his office.  

I see an EXCELLENT psychiatrist. He told me "you must be your own advocate.  The doctors DO NOT CARE.  They don't sit around in the break room talking about cases anymore - they sit around talking about how to reduce overhead."  

 Blake, I don't want to be an alarmist so I didn't post my initial reaction, but that thing about only doing the MRI on one breast was SERIOUSLY weird.  The ONLY way that made sense -- MAYBE-- was if it was a given that your wife had chosen masectomy, and even then it might show how close the lesion was to the nipple or chest wall -- both extremely important for different reasons. 

I've seen nothing so far which suggests my psychiatrist is wrong. I become daily more convinced that it is up to me to do the research to know the questions to ask -- they FLAT ARE NOT GOING TO VOLUNTEER.  They have their deal that they have done for X numbers of years, that is their decision tree, and they will, I think, guide you down their path. 

 Probably 99 percent of the time that is the right path.  But it needs to be my path.  

Let me start by reiterating that I'm not married, so.....

I'm not really sure why your wife is angry.  Is she angry because the Dr told her an MRI was not necessary, that she'd "light up like a Christmas tree," and they'd turn out to be false positives? In other words, is she angry because she feels we, and you, pushed her into another round of biopsies which she feels is costly, anxiety provoking, and ultimately with no purpose?  Is she simply angry because she does not want to deal with this, and wants to hand complete control to her Drs?  Is she just afraid to upset the Drs for all the reasons LadyGrey describes above? 

I don't get it, and I have zero advice for how you should handle it.  Maybe you should back off, stop posting, and let her handle this the way she prefers.  It is, after all, her life and her cancer.

You may disagree with her decisions, and there's the possibility that once you stop she'll feel abandoned....  I dunno.  Don't take advice on this from a single girl!  LOL

Obviously, I hope the results are benign.  If they are, she won't have to wonder (assuming she would have).  If it's more cancer, I firmly believe it's better to know now rather than years from now.  Didn't someone say that above?  I agree.

LadyGrey - Good point about MRI potentially giving further info about location re nipple or chest wall.  I can only assume BlairK's wife had already made the decision to have a mastectomy, and is not interested in a nipple sparing procedure.

An MRI guided biopsy is essentially the same process as the MRI, except that you slide in and out a few more times; and on one of the slides out, they stick some kind of grid thing around your breast, figure out the coordinates as per the image which resulted from the first slide in, and do the biopsy,  Sort of like a stereotactic/core biopsy but done in the MRI machine rather than mammo.

Some women find it easier than mammo biopsy, some don't.  No way to know beforehand which  group you'll be in.  

Takes longer than the first, imaging-only MRI.  I can't remember if they use contrast again, but if I had to bet I'd say they did.

Ahh...the horrible things time allows you to forget.  (My MRI biopsy was 2 years ago.) 

And I also agree that I'm not sure how it's possible to only do an MRI of one breast...do they crop the screen so they only view half the image?  Does the machine only record one breast at a time?  I don't remember.  It's just odd.  

Back to BlairK's wife....re the discussion of a BMX with the reconstructive surgeon, perhaps she did discuss that possibility?  Does she remember discussing it?   It's not uncommon for a plastic surgeon to bring it up as an option.  Though it seems like the BS got the impression that your wife had decided on a BMX, which is odd.  All in all, it's probably good that this is taking more time - both for your wife to decide what she wants to do, and for her doctors to get on the same page.

Wishing you both the best. 

Very good advice, exbrnxgrl, theladygrey!  As with the others on here, I am in agreement that I think it is time to let BlairK's wife feel like she is making her own choices.  Perhaps she is silently doing her own research and is starting to get resentful that she feels out of control with BlairK seemingly having more knowledge about HER disease. 

I know I would welcome my husband (of 26 years) to be involved in my treatment, but I would not want him running the show OR talking behind the scenes to my doctor about ME. 

Heck, my Dad came over the other day and proclaimed himself, "a new breast cancer expert" due to all his research and reading.  I goffed at that and wanted to just throw up!  He is trying to be helpful, but it really hurt to think he knows what is best for me. 

Yep, time to just be in the background, BlairK or you may just create more unneeded pressure and stress on your wife.  My opinion only.  Be there to hug her and listen because obviously she is getting irritated with you posting her information on the boards.

I agree with sweatyspice that they will test during surgery but will not truly know about margins and idc until about a week later.

I had idc (thankfully small so no chemo) and it didn't show up on the testing done during surgery. The first my bs and I knew about it was when it showed up in the final pathology report which was read to me at my two-week followup appointment with bs.

Blair,

Maybe it's time to take care of yourself a bit and get some more ideas about your role as support for your wife.  You might try posting on the board called: "For Families and Friends of Those Who Have Breast Cancer." (Go to the Forum Index tab, then scroll down to the Support & Community Connections area of the index.  You'll find it as the 4th entry there.)

When you get there, take a look at the first pinned thread, you'll find a link to a blog entry from another husband, one who ended up writing a book about being a "Breast Cancer Husband."

And if you re-read your threads, I think you'll find lots of us were extending caring to your wife (through you since she's not posting here), and suggesting that you defer to her.  If you pull those out, you'll be able to show her that we want to be her girlfriends, not yours.

Hang in there!

LisaAlissa 

Blair,

I have read from the beginning of the posts and I want to make sure you are not feeling sent away. When I heard my husband had been looking into and reading about the cancer, I felt very cared about and I'm sure your wife did as well. It sound like the issue is bypassing her rather than working with and empowering her. I too am always afraid to upset the doctors and my husband just supports me with comments like, "I know, but you need to do what is best for you and my concern is for you. We can always get a new doctor but I only have one you." Although I agree with what is said here about needing to make sure your wife feels in control, I can hear how much you want to help and I wanted to offer some suggestions for how you might really be able to help your wife.

1. Be informed: sounds like you are doing a good job of that and if you have more questions, definitely post unappologettically.

2. Be a listening ear without trying to fix it (I know that is hard when you see her hurting). What she needs is someone who can empathize. Agree with her that this stinks and is unfair, frustrating, etc...just walk with her through it. Trying to fix it sends an unintended message that her fear/discomfort is not ok because it makes you uncomfortable and you need to make it go away.

3. Ask her questions when she is talking about how you can help: if she feels comfortable bringing certain things up with the doctor? if it would help for you to ask women who know and see what they think? Is that what she thinks is best for her? What she really wants to do and how... things like that. What it tells her is that you are focused on her and what she needs from you right now more than how it is making you feel. It will also help you know the ways in which you can take action to help, taking away any feelings of helplessness about seeing her hurting and not knowing what to do. As I stated, this can be really hard for men and I'm sure it is for you as well by your posts.

4. Most importantly, don't forget to still treat her like a women. She is a cancer patient, but she is also still a women and it can be easy to forget all that while you are going through this. You may be doing these things already (although not from Hong Kong but maybe you could send flowers from there,) Make sure you sit with her and hold her, ask if she is up to going out (date night) and try to do something fun like a movie or bowling, things like that. I remember the first moment my husband gave me a non-sympathetic hug that was just to be affectionate and it felt so nice not to be treated as sick for a little while.

It is obvious from your posts how much you care for your wife and these boards are a great place to get some questions answered. It sounds like your plan of utilizing the information you gain to better talk to doctors is really wise and I can see that you are wanting to empower your wife. Everyone is right that your wife is, and will continue to have to be, the one fighting this battle and you cannot win it for her. However, you can be her second carrying out waht she needs from you in the way of support.