Daughter Diagnosed last week with surgery on Wed.

JillyJill

Hi:

I am Jill and my 36 year old daughter was diagnosed last Thursday with DCIS grade 3. She has BMX on Wednesday due to size of tumor and high family hx on father's side.  With 5 children, 3 of which are 3 and under, I imagine we are in for a major life alteration.  They will test nodes so not sure of extent at this time or if they will begin reconstruction or just do expanders during this 1st surgery. Main thing for me is how to bu the best support I can be for her and the children. Really outof my depth here but talking it one minute at a time. Any and all suggestions invited.  We have her husband, myself, her mo-in-law, and full time nanny for support.

GottaloveNED

I would say take your cues from her. With my BMX I was able to do most things within reason by myself after a few days, but I wasn't dealing with small children. Remind her she doesn't need to be the perfect patient. If she needs quiet, someone will take the kids for a while, if she needs food or shopping, offer to provide that. Depending on the outcome of the surgery and pathology she may have good and bad days ( or parts of days). Just remind her you are ready to be there for emotional support and specific help with whatever she or her family needs, even if it's taking the kids to a movie to distract them and get them out of the house for a while.

JillyJill

Thanks so much. Everything is happening so quickly.  I would do absolutely anything in the world for her and appreciate your support.  She can be whatever she needs to be and feel whatever she needs to. She can't life the kids for a while and the twins are at at age where they want to be held off and on.  We will make do to balance out her needs.  Should I try to keep the kids away from her so they can't accidentally hurt her for a period of time? If so, is that like a week or longer?  Thanks!

mgdsmc

I'm so sorry to hear about your daughter. You came to the right place for support.



I would say the best thing you can do is listen to her. Some people want alone time to deal with the fear and sadness that comes with diagnosis. Many friends and concerned people will call and want to visit but she may not want to deal with all the questions. As a mom you can protect her from that until she ready to deal with it.

I had my BMX 10/26/12 and was able to do most things by myself but did try to do things I couldn't because I didn't want to always ask for help. My kids knew that and was always close by watching and ready to step in.

Remember she is losing a part of her. It's more emotional than many people think once you wake up with no breast your entire body image changes.

She knows she's loved but cant hear that enough. Just wipe the tears hers and yours sit and listen.



Hope this helps

JillyJill

Thanks for the advise and thoughtful words.  My very best to GottaloveNed and mgdsms.

SpecialK

jilly - sorry you find yourself here - I can't imagine how painful this is for you trying to support your daughter - I am sure your heart aches.  A good solution for little ones is to lift them into bed or on the couch with her so they can snuggle a bit, maybe with a pillow for her to shield her chest.  I would also recommend a basket with things like glasses, remotes, phone, tissues, etc. to keep within reach.  I am sure you have thought of button front PJs and tops, pull-on pants like track pants.  She will most likely have drains as well.  I am going to put some links below with great info for you as well.  It sounds like your daughter will have lots of support and help - I did not experience a great deal of pain after surgery - I had a BMX with immediate expander placement - more of a feeling of tightness.  I only took pain meds for a couple of days, then switched to Tylenol.  I found that a warm shower went a long way to relaxing and soreness.  Wishing only the best for all of you!

http://community.breastcancer.org/forum/68/topic/790992?page=2#idx_52

http://community.breastcancer.org/forum/91/topic/699896?page=19#idx_541

http://www.breastcancer.org/treatment/surgery/mastectomy/expectations 

JillyJill

Very helpful information, SpecialK. I was wondering about the pain level and also about how to manage the little one who are so attached to their mommy.  Sitting them next to her after the first few days with a pillow sounds perfect.  Also, good to know about the basket - great idea and the warm shower.  She doesn't like pain meds so that is a relief to hear. Of course I know we won't know everything until the surgery is over. By the way, do they do the pathology right there while she is still under anesthesia and tell us then or do we get that information a few days after the surgery? Looks like you have been through a lot. I hope you are doing well and God bless you!

SpecialK

jilly - the timing of pathology info depends a lot on the particular breast surgeon and whether he/she is sure that you are dealing with pure DCIS.  Some surgeons do a sentinel node biopsy for DCIS and some don't, but they will if there is any suspicion that there is an invasive component within the DCIS.  If a sentinel node procedure is done the pathologist usually takes a cursory look at the node(s) removed in the OR with a much more in-depth look in the lab later.  The breast tissue that is removed is not looked at in the OR but is submitted to the lab for pathological assessment. The pathology reports are available within a number of days following surgery - ask the surgeon, there also may be a slight delay due to the holiday. I am doing well but you can see by my sig line that my experience has not been problem free!  One important piece of advice I can give is to learn to roll with the punches, take this one day at a time - such a cliche, but oh so true!

JillyJill

I hear you - thanks for the reminder.  I need to stay in the present and not get ahead of myself. Because of the grade we already know that they plan to check some of the nodes.  Thanks again for generously sharing your experience with me and take care. I am sure I will have more questions after the surgery on Wednesday and after we get the path report but the one day at a time suggestion is more relevant than you know!  Take care. 

thefuzzylemon

SpecialK....you're the bomb baby! All I can say is. .. don't ask, just do. Dishes in the sink? She loves ice cream? Kids want a pizza night? And, make these into lists so when someone asks "need anything" "what can I do" just pick from the list! Oh...if they have pets, please add them in there for walks or playtime....

Now...Mama....you must be good to yourself too. Its a lot to take in. Breathe, take time to yourself...you'll be stronger and able to help you're baby girl better.

XOXO

SpecialK

jilly - please ask all the questions that occur to you and one of us will be here to help you - this is a fabulous group of people that are here to support you and share our experience with you.  You certainly need to ask any and all questions of your daughter's physicians, but for practical experience the ladies on these boards are a wonderful resource.

fuzzy - you are the bomb as well my friend!

thefuzzylemon

<br />Amazing women who quickly become closer than sisters...truly friends who understand things that no one else can.

JillyJill

Thanks for your support all. So far so good. The mastectomy (both) are done and she is healing well. One node taken and is negative; waiting for micropathology report this next week but Dr. is very positive and initial dx is stage 0. (Dr. a survivor , too). Of course, we have just started on this road which includes the reconstruction, etc., a path you all know too well.  Given the possibilities, I feel very grateful. Just the same, I have also hit a wall and am emotional today, having pretty much stuffed feelings for a while. Also feeling quite exhausted. I guess just take it one day at a time, right? 

Myrinda

Hey jilly jill, believe me! Just because you are there is a blessing for her! Tomorrow is my exitional byopsy chances that is all bening are high but I miss my mom with all my heart! She died 10 years ago and i'm sure that all of this would be so diferent if she was here with me!! You guy are so licky to have eachother!!! Love an hugs!!! And I'll be praying for you!