Wife DCIS

TLF32

My wife who is 34 was just told she has DCIS. Doctor said she has DCIS, pathology says bordering on DCIS. Not sure if that makes a difference. ER+ 99% and PR+ 99%. Doctor gave option of lumpectomy w/ radiation or mastectomy, but seems to be pushing mastectomy. My wife seems to agree so that is good.

I am struggling on how best to support her. I am trying to focus on it being non invasive and 100% treatable. I just want to calm her fears as much as possible but at the same time I think I am coming across as insensitive. Any advice on how to make this as easy as possible for her? Any other advice or explanation of diagnosis would be greatly appreciated.

PNWBCHgirl

best thing you can do for her is to reassure her you love her , know her love language be their for her and support her every step of the way

Moderators

Welcome TLF32,

We're really sorry your wife received a diagnosis recently.

It can be really difficult to know how to support loved ones but It sounds like you're already being really supportive by being positive and just being there for her.

As well as the responses you get here, you may find the podcast below helpful to listen to which talks about ways to support a partner through diagnosis and treatment.

Supporting a Partner With Breast Cancer

You may also like to have a look at our BC caregiver forum below:

For Caregivers, Family, Friends and Supporters

Wishing you and your wife well,

The Mods.

Matryoshka

Hi TLF32, it's really wonderful of you to join this community to better support your spouse. It can be such a reeling experience whether for the person diagnosed or for her loved ones. I am the same age as your wife, although my diagnosis is different so what I know might not be relevant. There are plenty of other knowledgeable ladies here who will be able to offer some advise with regards to DCIS.

I do like to share that the first couple weeks from discovery to diagnosis, what really helped was being able to talk about it to someone who is not full of pity. I don't know if that makes sense. For me, I talked to a friend who was interestingly very objective about it, and did not once showed me any sense of sympathy and also asked very good questions, that contributed to my research and also my consultations with my Doctor. Having a listening ear also really helps.

Then comes the research. I would really recommend for you and your wife to really do some reading up, and ask the Doctor a lot of questions. I kept going back to the doctor with my questions, every time she tells me something, I will go home and research (this community is a wealth of resources), and go back to her. To the extent she jokes that I am the patient with the most consultations with her in her entire career. I even requested for her to squeeze me in the day before my surgery last month, just to make sure I am completely clear about the treatment plan.

Another thing you can do, will be to go on consultations with her, even if she say it is not necessary. I initially went for consultations alone, but got so overwhelmed with the info, that I finally got a friend to go with me. A few times, she helped me to ask the questions that I forgot to ask, or never even think of to ask, sometimes even afraid to ask. This really helps. Both of you can discuss on what you really hope to get out of the consultations beforehand, and list down the questions to ask. Also, don't be afraid to consider a second opinion. I had a few reservations about my treatment plan initially, and sought out a second opinion who concurred with my Doctor, which made me feel a lot better.

I hope this helps at least a little bit. All the best!

LAstar

Listening and snuggles were the best for me. You can't fix this. You can't keep her from worrying, so give her the space to worry and tell you her deepest fears. My husband was great -- he went to every appointment with me, changed nearly every bandage in 6 surgeries, cooked, cleaned, parented, and held it all together while everything was falling apart. I wish every woman going through this could have such loving solid support. But he admitted that sometimes he forgot all about it. I never went more than 5 minutes without thinking about it. Normal life felt surreal. Standing around talking about the weather with casual acquaintances was torturous. This was especially true when I was making decisions about my treatment path. The decision between lumpectomy & mastectomy, about sentinel node removal, fears of invasive cancer, reviewing all the statistics -- these issues completely dominated my thought processes until I woke up from surgery. Then there is pain, but also a great relief of having gotten through the surgery and knowing the cancer is out.

Is the surgeon recommending mastectomy because of her young age or because the DCIS appears to be widespread?

Best wishes to both of you!

MTwoman

I agree with LAStar, in that help doing some of the "ordinary" things (like cooking, laundry or cleaning) is really helpful, especially after surgeries. My partner washed my hair for me at the kitchen sink, when I couldn't lift my arms or get wet. Felt awfully nice. My Mom (who doesn't live close by) arranged a "soup punch card" at my favorite local take out place (they make 6 fabulous home made soups daily and it was winter)

I would suggest that you take your cue from your lovely wife. Ask her what would be most helpful. I think that if she likes to be reassured about her diagnosis, she'll be able to tell you that, and it won't seem insensitive at all. Ask her what you can do that would be most helpful. Especially if she is the one who always takes care of everyone else. It was interesting for me, that I complained to my therapist that everyone was always asking "what can I do?" lolol. She encouraged me really think about it. To make a list of things (both small and large) that would feel nice to have some help with (whether I needed it or not), so that the next time someone asked, I could tell them, "well, now that you mention it . ." and show them the list. It was an amazing thing. sort of turned things around a bit, and made me feel supported and people who cared about me were able to actually do something (which made them feel better). Win win.

If you're listening to what she wants, it will be the right thing. We're all different. But doing whatever you can with love will be appreciated.

BarredOwl

Hi TLF32:

Re: "pathology says bordering on DCIS"

Under the circumstances, I might be inclined to seek a second opinion at an independent institution, including a review of pathology reports and slides (sent overnight). Often a multi-disciplinary team provides a second opinion: a Pathologist (to review pathology reports and slides); a Radiologist to review imaging and related reports; a "Breast surgeon" (whose practice focuses almost entirely on the treatment of patients with breast cancer or at high risk); and a often a Radiation Oncologist (e.g., especially with breast-conserving surgery).

If of interest, for a second opinion, many patients look for a comprehensive cancer center at a university or teaching hospital. In the US, some seek an "NCI-designated cancer", if feasible (e.g., confirm in-network). She may choose to pursue treatment with either team.

NCI-desingated cancer centers: https://www.cancer.gov/research/nci-role/cancer-centers/find

BarredOwl

Lula73

so sorry you two are going through this. And so wonderful you are actively looking for ways to support your wife. It sounds like she is a pretty independent woman which can make things a little more difficult for you as you don't know what to do. My advice is to ask her what she needs you to do in addition to being her sounding board, venting target, lover and comforter. Go to the dr appointments with her and ask questions. You'll find 2 things: your questions are sometimes different than hers and the memory/account of the responses will be better. Whatever decision she makes, make sure she knows you support her and have her back.

You also asked for help deciphering the current information you listed: the diagnosis is DCIS which stands for ductalcarcinoma insitu.This means the cancer is in the ducts and currently confined to the ducts. ER/PR+ means the cancer's food sources are estrogen and progesterone. This is good because it means we have medications that can block the hormone activity and effectively starve any lingering cancer cells that are missed during surgery and/or radiation. The things that aren't listed in the pathology posted are growth rate, size, oncotype score (may not be back yet) and whether your wife has had the genetic testing done yet and those results. These are important results to have as they help guide you in decisions.

My diagnosis was similar to your wife's (although I'm 10 years older) and I chose mastectomy vs lumpectomy w/radiation. Let me know if you have any questions about that option or if you have questions about doing natural tissue reconstruction vs implants (especially since your wife is so young).