Topic: NEW TO GROUP

Daphane

 How old are your children? How much you tell them will vary with their age and ability to comprehend

Trish

My kids are older, but the youngest- 13yr old girl wanted few details, so I didn't give her many. when I told my son - 18, his only real question was would I lose my hair.  Since I had dcis ( right mascetomy) I didn't need chemo at all.  They knew I had the surgery, and were helpful for the few days after when I was less mobile. I chose  not to do reconstruction after so the recovery was quite short and the kids were pretty nonfazed by it all. I was able to schedule my surgery near Christmas when my older ones were home and could help. I would tell them you have early stage breast cancer- hence the surgery, but the good news is since it was caught early no chemo. Give them as much detail as they want and can handle, but alot of info about Mom's breast may be TMI for a young teen. You know your kids better than anyone. Trust your judgement.

take care

Daphne-

My kids were 10, 8 and 4 when I was diagnosed.  My middle child is very sensitive, and I worried about scaring him with the info.  I opted to play the "Susan Love definition" card and called my DCIS pre-cancer (even though I don't consider that accurate terminology!), and that my surgery was to prevent it from becoming actual cancer.  This seemed to satisfy my kids, and kept them from too much upset/worry.

I also waited until just a week or so before my mastectomy. (I had the biopsy & lumpectomies while they were in school and not really aware) At first I was shell-shocked, and couldn't talk to *anyone* about it without bursting into tears.  I knew I didn't want to do that in front of my kids, so I waited until I could emotionally handle that conversation with them.  Worrying about telling them, and how they would react weighed heavily on my mind.  You know your kids best, and the right words will come!

Mary

I think telling them about the actual mastectomy is going to scare them, but won't they notice? Can you wear the prosthesis right away or are you so wrapped up that no one can tell?  I haven't scheduled yet, but I wish it was done already. At this point, I am not even thinking about reconstruction.

Are you big chested? I was wrapped up for several weeks afterwards and unable to wear anything but a button front shirt, so the lack of breast wasn't a big deal.

My kids were more grossed out by the drain I had for about a week. Once that was out then they didn't really care.

You can get a softee prosthesis to wear shortly after your drains come out. You have to wait until you're healed for a "real" prosthesis.  

It is hard to lift and reach over your head for awhile, so the big thing is to prepare your children for the helping they'll need to do.  Once you start asking them to help they'll focus less on your disease and more what a pain-in-the-bu## it is to always be helping

Hey, thanks for the comments. today was rough. i didn't sleep well last night & went for pre-op testing today & am afraid they will find something else!  i have to take my kids out for awhile, but will try & check in later. thanks for the help!!

Daphne,

I was diagnosed with DCIS in Feb and opted for bi lat mast.  My son is 12 years old.  I sat down with him and told him the facts.  His first questions was.....are you going to die?  As no one can offer any guarentees, I told him it was not likely because they caught it sooo early.  He has a counselor at school who's mother had breast cancer also.  She has been a wonderful resource for him.

He was crying a couple of nights before my surgery and when I asked him why, he told me that he was afraid I would not wake up from the surgery.  I think that was tougher than our conversations regarding the dc dx itself!  I told him I was in the best hands and we would think only positive thoughts!

Now that the 'worst' part (to everyone else at least) is over.  He seems to be fine with everything.  I am here and that is what matters to him.

He will be starting middle school next year and is amost a teenager, so he has more important things to worry about I guess.

It was a personal decision to include him and share as much information as I did with him.  And...I felt bad...what 12 year old boy wants to talk about boobs with their mom???? No less thier mom's boobs!!!  We have had some fun with it and he even offers massages sometimes before bed.

You will know what the right thing to do is when you are ready.  I do believe things happen for a reason (don't know what it is) and we find the strength, wisdom and patience to handle what we are dealt.

Best of luck! 

Stephanie

I'm sorry I haven't had a chance to read the other responses, but I wanted to mention what a great learning experience this could be for your kids.

My daughter is two and she's been to many of my appointments.  She's seen my enormous scars and watched me changed bandages after surgery.   I tried very hard (and it wasn't easy, believe me!) to be positive and explain things to her so she wasn't freaked out by any of it.

She was in the exam room when my PS removed my stitches and pulled out a giant needle to aspirate one of my breasts.   I didn't plan on brining her, but I was stuck without a sitter.  She was very curious and handled it well.  I've also noticed that she's been much better at her doctor appointments after seeing how I handled mine.

Kids are smart.   Keeping things from them might scare them more.

I'm sorry you're here.  BC totally sucks.  When I first got my diagnosis I was up all night vomiting and shivering.  My body was pissed!

Ok, I'm going to show my new-ness to this diagnosis! In an earlier post, a diagnosis was discribed as camedo and cribiform pattern, what does this mean? Thanks to anyone that can help.

Daphnesplace~

I have two children, ages 9 & 12 and I had received the phone call when they were home with me...they knew I was waiting on an important phone call and needless to say I broke down in tears...they had told me DCIS yet, there was a lot and I had to wait until the FINAL path to find out all the details.  I tried to be so strong, I told them I was just very disappointed. To let us do the worrying and everything would be fine.  They actually have been my strength a support you would be surprised how children can be.  I found they mimic me...if I was fine they were and if I had a 'moment' they joined in.  I kept reassuring that this was caught early and with todays technology this is a SURVIVABLE disease.   I think you should be very open and honest.  I didn't give them tons of details just short and sweet and was open to all their questions. 

I ended up having a mastectomy ( with drains ) my oldest one wanted to help ALL the time!  I kept trying to 'shelter' her and she kept insisting. I fell into a 'grey zone' with one positive margin and had to have 7 weeks (35 rounds of radiation) so they were very understanding of again my disappointments.  Through and with God/family and doctors we are all getting through and I never felt alone on this path.

My best to you and your family ~

Much LUV

Unfortunately, we know that feeling all to well.  You are somewhere yet your not there ???  Get your results first and then have any discussion if necessary with them.  Sending you ((hugs)) and b9 results!!!

The waiting can easily take a toll especially at night...when your mind wonders.  Stay positive.  There are PLENTY of woman here that post and get good news!

Remember, I was told perform BSE (Breast Self Exams) only once a month no more no less, as you can 'stimulate' your breast and irritate it further.

Much LUV

Hello to Daphne, Carlynn and Maggie

Sorry to see you girls have to join the club too. I was DX in Nov 07, which in the end lead to single mastectomy March 18 2008. I must say this site has been a godsend and the women here have been very supportive and knowledgeable.

I do not have young children but do have a 21 year old daughter in university. At this age there is full understanding of the implications of a DX like this and what I had to do. Although I needed to discuss it with her, at the same time I did not want to worry her to much in the middle of exam time. I kept the explanation as simple and clear as possible and kept emotions in check whenever talking to her about it. She is the type to worry and stress out about things so I found myself having to be the one to hold up and destress the household as much as possible. My DH does not handle stress well either so it really ended up being not only my DX but also my job to keep things calm.

Yes Daphne.  My surgeon told me that not only was DCIS treatable, it was curable. As it is non-invasive by removing the breast tissue that it is contained in, you are curing the disease.  In my case,  my path report came back with LCIS as well which raised my chances of the cancer coming back.  Not only in the affected breast but also in my other breast.  I have opted for bilateral mastectomy with reconstruction and I will be having surgery on May 1.

Daphne

The wait was not my choice.......eeek....waiting was rough for me but that's another story.

The way our system works is the most serious go first which is a given. Since DCIS is not life threatening a period of waiting won't make much difference for the outcome.......that's the way it was. Yes the waiting is no fun but the ladies here got me through.

Having a mastectomy is about as close to getting a "cure" as your going to get for the affected breast. I didn't really have much choice as mastectomy was recommended in my case.

A few extra weeks won't make much difference so don't feel rushed into doing something till you feel sure about what you want and what you and your doctors feel is best for your circumstances.

Best to you and let us know how it goes. Viv

Here's another crazy question--someone I  know states her surgeon told her he doesn't like to do a mastectomy 1st, just a lumpectomy,until the cancer returns(!)because if you do a mast 1st, if the cancer comes back & will have no where to go(!), but to another organ. This makes no sense to me, but i figured i would run it by you girls with more than my 3 weeks of DCIS experience.  It feels like months!