Received DCIS Diagnosis - Comments Invited

BlairK,  welcome to a wonderful site for information. I'm sorry though that you have to be here. However, you'll learn what happens in real life because the folks here live through things that don't necessarily make into research studies. For instance, tamox side effects - I told my doc that my bones were killing me from taking tamox, but was told that was such a rare side effect that the pain couldn't be from the drug. I've read about lots of people on the drug with that same rare side effect here so I tend to lean towards the experience of the people here over what the docs say are in the studies.  You are in the worse part of the journey right now - waiting to find out what is going to be done. But throughout this, you will find yourself waiting, and waiting, and waiting again. I believe this can teach you how to be patient.  Sound like you've done good research. And I understand how your wife feels - it's scary as all get out being told this news. But it does get better. Even though your wife doesn't like to do research, if she's got questions or concerns she needs addressed, please invite her to come here. We are here to answer questions, to hug each other, to give support, and we can be used as a place where she can vent.

BlairK - I am so very sorry you have to come here.......noone really wants to be here......but welcome to a wonderful group of women and men.  They will provide much info and support.

I had a diagnosis similar to your wife's...............it is scarey but very treatable.  I had a vacuum assisted biopsy, followed by an excisional biopsy and then another surgery to attain clear margins.  The doctor wasn't sure if he could get clear margins as my area of DCIS was close to the chest wall.  We got the clear margins and I just completed 6 weeks of rads.  YEA!!  I am doing great.......fatigued from the rads with some skin issues also.  However, I am very thankfull they found it when they did. 

It is obvious that you are very committed to her treatment options........and your researching is a good thing.  It is good you like to do the research since most often everything we read can cause anxiety and unrealistic thoughts and "what ifs".  Just being there for her is probably the most important thing you can do right now.  Go to her appointments as it can be difficult for the patient to retain everything being told to them.  Tell her you will be with her every step of the way.  Sometimes we need to hear that - and she will love hearing it without asking you to say it.  The waiting is the hardest part.......and once treatment is decided on and things start happening it will get easier.

Hugs to you and your family.

Yes - you are correct on the Comedo-type with necrosis as being more aggressive.  That was my diagnosis - although mine was Grade 3.  But, as you probably know from your research, DCIS is non-invasive no matter what the grade.  I cannot offer insight on the suspected microinvasion as I did not experience that.  The radiation is pretty standard - as with DCIS it usually does not present itself as a lump and they want to make sure they kill any possible cancer cells they missed.  Radiation and tamoxifen are a personal choice - as I have seen some women who have refused these options - there is no "right answer".  I will be starting on Tamoxifen in a few weeks.  I figure the least I can do is give it a shot. 

Your wife is very lucky to have your support and willingness to learn everything you can for her!  I am sorry she is withdrawing - perhaps once you get back to the states you can help her more with that.  I also went through that at the beginning and just tried to not think about it.

Good luck and stay in touch.  This really is a great place to come to. 

Heidi

I am doing great.  Except for the fatigue from the rads (which is a pretty common side effect).  I worked full time through my radiation treatments and the radiation oncology group here scheduled my appointments in the evenings so the only work I missed were for routine doctor appointments.  this was very important to me as I wanted to continue on to live as normal as possible.  I understand that some women cannot physically do this but it worked great for me.

I told my kids after the vacuum assisted biopsy - when they told me it looked like Atypical Ductal Hyperplasia - but they couldn't be certain it wasn't DCIS so I would need an excisional biopsy.  My kids are 25, 24 and 20.  My boyfriend took it much harder than my kids - LOL!  They were so used to me being "ok" when they were growing up I don't think they even realized how serious this could be. 

My mom took it pretty hard - as she is going thru her own medical issues and I am her caretaker as far as doctor appointments, etc.  But she was supportive and let me have my time to get well.  Now I can help her get on with back surgery and trips to UVA to see her doctor.

All is good now...........and I intend to do everything medically possible to make sure this does not rear its ugly head again!!

You will get many posts and info from the exceptional women (and men) here.  Their wealth of knowledge on these subjects is overwhelming.  It is nice to get "real life" info and not just what the doctors tell you. 

Blessings to you and your family.

HI, first I want to say the most important thing you can do is what you are already doing an amazing job at... being there to support your wife... I went throught he exact same thing in may.. got my diag. right after my 40th b-day mammogram.  I had no lumps.. so was very "lucky" with he timing of my mammo. Try not to let the "possibility of microinvasion" scare you too much on the path report... I let it freak me out on mine, my first path report from the stereostatic biopsy didn't mention it, but I had the path redone at Sloan Kettering as I was freaking out and that is where the possibility of miocroinvasion came up... long story short it didn't change any of my decisions it just caused me another round of freaking out and crying.  I ended up with no microinvasion and my surgeon said it is pretty standard to put the possibility of it into the initial path report.  The kid part was hard.. I have kids ages 5,7, and 9.... giving acurate information without too much information was hard.  I started out saying I had a booboo thart had to be looked at, but then read somewhere it wasn't good to use terms like that as kids would think they might have cancer everytime they had an accident... so we used simple language and explained that I had some bad cells in my breast and was doing everything I could to make sure I got better and gradually just put the words breast cancer into everyday conversation.  I had a double mastectomy with reconstruction on July 1st... I have had other medical problems including Hodgkin's disease as a teen ager which the radiation from that treatment probably led to this cancer.. so I was very aggressive with my treatment... I am now done except for finishing reconstruction... no tamox. no radiation.  Both forms of treatment for DCIS are based on how much DCIS there is (multi focal/ multicentric sometimes makes a lumpectomy not possible) and a persons own decission.... that is part of what makes dealing with DCIS so hard as there are so many variables.  Take your time and ask a million questions, people will tell you there is time to make decissions.. I wanted my surgery the day I found out my diagnosis, but it took me 6-8 weeks of second opinions and consults with plastic surgeions, and now so glad I took the time to get people I am comfortable with and trust completely.

I so understand your wife not wanting to talk about it right now, I was the same and couldn't talk about it until after I got my final path report and knew what I was dealing with.... now I think I talk too much about it... I hound all my friends to get their mammos, etc.  It all takes time, she is in the worst part right now, it does get better.  the stress is so intense.  just be her friend and it does help so much if you go to appointments, I was in such a daze and also not sleeping... couldn't process much less remember what doctors were telling me.  My husband was also wonderful, and in a weird way this has brought us so much closer and you get a reminder of what is really important and let all the other stuff go.  After my surgery I had several people tell me my husband looked worse than I did.. he was so worried.

Huggs to you and your family, I have found this site so helpful.. I hope it helps you too.  Feel free to ask me anything if your wife decides to go the BMX/ tissue expander route.  There are tons of lumpectomy ladies on here too who can help with those questions too.

Blairk

"Bump a thread" means I put a post in that thread that brings that thread closer to the top of the thread page.

If you look at the thread list now you will find a thread called "DCIS: Facts and Misconceptions" by Beesie. She posted that thread a while back after having spent a great deal of time gathering information on DCIS.

DCIS can have many misconceptions. It can be confusing. This was her way of trying to be as clear for people who are dealing with DCIS diagnosis.

AFA as your wife's Dx with DCIS and can it be worse question. Sometimes, the initial  Dx isnt the final Dx.

You posted that her report read " comedo-type with necrosis and suspected microinvasion"

Microinvasion means it has just begun to become invasive. So it is no longer "pure DCIS"

Beesie's post will help you understand the difference better 

Blair- I was dx with DCIS 6/2/2011 as a grade 3 with cribiform and solid and comedo-type with necrosis. My story was a little different in that my vacuum bxs were all benign but after having 3 in the same location in 5 years I presued an open breast biopsy. To everyone's surprise they found a 3mm lesion. My margins were excellent. I had no option for a mastectomy since they had it all. I just finished rads 2 weeks ago-25 sessions but decised no extra boost treatments. I start tamoxifen tomorrow. I can totally relate to your wife's depression and withdrawal. I started a journal at the beginning of my journey to help me deal with all the feelings I had. Looking back I was extremely depressed. 

Yes I had to tell my adult kids. (I am your wife's age.) That was very hard. I did it poorly. If I could go back and re do that I would. My oldest was harboring incorrect ideas about his chances of cancer. I realized this 3 weeks later. Both boys and my husband were my lifelines! They helped me stay focused in the here and now. I urge your wife to let her family know. My sister, because of my dx, found a lump in her breast. She is starting her our journey with cancer in both breasts and 2 different types. At the beginning, I wondered why it was me. Now I know that because of my dx. I can help my sister.

Blair stay strong. You will be her lifeline. One piece of advise is to get to her doctor appts. Because of the high level of anxiety, I only heard 20-30 percent of the information. My husband took notes and was able to answer all my questions after the appt. Please feel free to PM me. May-be your wife would like a question or two answered instead of joining a board. Please give her the option of also PM me.

Best of luck. You two will get through this and hopefully with a stronger marriage. You are at the hardest point now. Once decisions are made it does get easier.

BlairK,

One other thing you need to do is take care of you.  You need to be healthy and alert through this so be good to you, and get the sleep needed.  You will have alot on your shoulders over the next few months.....

Just a FYI...HER2 status is not routinely done on DCIS specimens.

Hi Blair,

Last fall I was diagnosed at age 44 (2nd mammogram) with DCIS.  My stats are somewhat similar to your wife's - Grade 2, hormone positive, some necrosis.   I opted to have a lumpectomy, but due to getting narrow margins, I ended up having a bilateral mastectomy (prophylactic on one side).  As a result, I didn't have radiation and don't take Tamoxifen.  I'm satisfied with the decisons I have made.

We have two children who were 7 and 5 when I was diagnosed.  I didn't want to scare them with the "cancer" word because my friend had recently died of cancer, and I was afraid they would expect me to die if they knew I had cancer - regardless of what I said.  So, I told them that I had unhealthy cells in my breast that the doctors needed to remove.  They were satisfied with that explanation, although if I had to do it again, I would use the word cancer.  They now know that's what I had, because they overhear enough that they are able to piece things together.  I would rather have had things out in the open from the get-go.  We still have on-going talks as necessary (eg. when I got my implants).

My girls never even knew when I had my lumpectomy.  I put them on the bus in the morning and was home by the time they got off the bus in the afternoon.  My husband took them to piano while I took a nap, and from there on, I was good to go.

Obviously, they knew when I had the mastectomy, as I was in the hospital for 2 days, but I bounced back quickly from that as well.  The girls didn't seem affected, but I spoke to both their teachers at school ahead of time to let them know what was going on and to tell them to let me know if they sensed the girls were having any trouble emotionally or otherwise at school.

Best of luck to you and your wife!

I know someone bumped Beesie's synthesis of her research on DCIS, which many have found useful.  I think you may also want to take a look at this post of Beesie's, which was in response to someone who was trying to decide between a lumpectomy and a mastectomy, a choice which is often presented to women with DCIS:

http://community.breastcancer.org/forum/68/topic/766252?page=1#post_2291264 

Nothing you've said so far suggests whether or not she'll be given that choice, but that post does a nice job of collecting the various factors that cause women to make one choice or another.

Second, there are also choices of radiation protocols, depending on what surgery she has, and what her cancer is like.

Third, the procedures & drugs used to treat BC can have serious side effects.  One that sometimes doesn't get consider is lymphedema.  You may want to take a look at the Lymphedema board here, as well as the Step-up, Speak-out website.  I particularly recommend the article there by a physician who developed lymphedema speaking to other medical professionals: http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm  

Finally, as you look as some of the newer protocols, procedures or tests, be aware that some of them may not be covered by your insurance company--if you haven't dealt with a serious illness before, you may be having your first experience with some of the limitations of US healthcare, based on how it's financed.  Many policies say they don't require preapprovals, but they also say they don't cover "experimental" procedures...and the insurance company decides when a procedure moves out of the experimental category.  For instance, some insurers still have Mamosite radiation on the "experimental" list.  Others don't allow MRI's before biopsy, but will allow them before surgery. Some drugs will be allowed, not others.

Sorry that you & your wife have to deal with all of this.

HTH,

LisaAlissa 

etc: links which weren't working...

Dear BlairK,

Glad I could alert you to the insurance issues. 

Ok, I've discovered that the first link in my first post doesn't work as a direct link, but if you copy & paste, it seems to work.  I'm going to disable that link, but wanted to let you know, as I think it's a really valuable post by Beesie.

Finally, please don't tell your family without your wife's approval.  At this point, she almost certainly feels well (certainly not like a cancer patient!), and it's hard to make the decision to put yourself in that category with others.  You need to let her take the lead on how/when those notifications get made. You can certainly advise, suggest, persuade, etc., but please let her make the decision. BTW, October is breast cancer awareness month, when all the pink ribbons come out to play, and she may well have (negative) emotional responses to all of that.  Many of us do.

HTH,

LisaAlissa 

etc: spelling & clarify 2nd paragraph