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Family Support
Questions about breast cancer & family support.
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AskedPublicly Submitted Question
9/7/2012Hi Lillie, You have been of tremendous help to me in the past regarding my 45 yr old wife who has stage 4 breast cancer. She was diagnosed 12/08, stage 4 at presentation due to hilar lymph node involvement. However, these were never biopsied due to their location and the fact my wife had a fast growing, 7cm HER-2+ tumor. She responded well to chemo, and other than a local recurrence in 6/10 that led to double mastectomy, she seemed to be doing well. At a meeting wtih the oncologist 11/11, he even said that it's possible she was stage 3 since original hilar nodes weren't biopsied. Well, a few weeks later, she had a seizure that led to a brain MRI showing a tumor. We had hoped it may be a meningioma, but it grew and was completely removed this past June. Although there are some positives, such as it being a solitary mass with no other evidence of disease currently,the fact it is completely removed, and that alot of trials currently seem to be for HER-2+ disease. However, my wife doesn't have much hope. She never read stats online before, but now reads life expectancies of 6 months to maybe 3 years. We have a 5 year old, and of course her sadness is mostly thinking how she won't be there for her at graduations and her wedding someday. I also have to admit I struggle with trying to stay positive for her while at the same time, don't want to give her false hope when she looks at me and asks if she will be here in 10 or 20 years. Sorry for this long winded question, but I can tell from your responses that you are very knowledgeable and also have a big heart, and wonder if there is any advice you can give me to support her? She does see a therapist, and she says she helps her feel better when she sees her, but the next day she still can't help focus on the fact she has a terminal illness. Also, have you happened to know anyone that has lived say 10 years with a brain met? Thanks again for all your help,any advice would be greatly appreciated.
RepliedJHU's Breast Center Reply
9/8/2012Ironically, i am writing to you from a spiritual center where we are conducting a retreat for couples with metastatic breast cancer. it is 3 days and 2 nights. we just completed our 2nd evening.

First, there are new clinical trials for women with brain mets who are HER2 positive so check on to locate them. Recently a new drug has been approved too for HER2 positive disease. And another TDM1 is soon to be available as well.

It would be very rare to see someone with brain mets survive a decade and personally i have not seen that happen, however when it is an isolated tumor sometimes it can be surgically excised or radiated effectively.

Realizing that at some point she will be leaving you and your daughter is devastating to think about however it is very helpful and wise to plan ahead. remember too that she could be hit by a truck before she passes from this disease, so i am an avid believer in being proactive. Something i stress to couples is the value of getting cards for their children to open when they reach specific milestones. graduation, wedding day, when your daughter is grown and has her first child-- and many other milestones prior to that such as first communion perhaps. what does your wife want to say to your daughter on that day? by getting the cards now and writing in them now she can still "be here "instilling her values in your little girl. I know from experience that children, once grown, truly do value these cards and words of support and celebration from their mothers because i have been contacted by young women who were in elementary school when their mothers died and now they are grown and married and they contact me to tell me what a difference it has made in their lives to read their mother's handwriting and the card that she selected for them and the words of wisdom she betowed upon them on their significant milestone day-- like their wedding day.

When we don't have control over what lies ahead we need to figure out alternative ways to still accomplish what we want for your children. this is a way to do that.

I hope she continues with her therapist and i recommend that the two of you go together to the card store to begin selecting cards. the greatest thing is of course when she is still here to be able to give your daughter the card herself. At some point however, you will need to be the keeper of these precious cards. thanks for loving her so much. your love and support is truly part of her therapy. L

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