Newly diagnosed...have questions

Luckymomof4

I've been a lurker on these boards for a few weeks now. Officially diagnosed a week ago. DCIS grade 2 in both breasts, LCIS and ALH also in right. I met w the breast surgeon last week also and as there are many additional hot spots not biopsied and the extent (size) (mri) I will be having a bilateral mastectomy. I have a genetics counseling meeting this Wednesday. And Reconstruction consult on the 17th.It's really starting to sink in and today is my first cry day. My questions are:

1) how often do diagnoses change after final surgical path comes back? I feel that she left it open ended for after surgery treatment based on final path and almost feel like I want to mentally prepare for more to come (which I know is silly)

2) the DCIS is 100% ER positive and 40% PR. I have an IUD (mirena) and was curious if I need to get removed soon. I know that once BRCA tests come back, there may be a rec for hysterectomy but in the meantime, should I make appt with gynecologist for removal?

3) what should I do to prepare for surgery? I'm 43 and in decent shape but am feeling the need to get in the best physical shape I can before surgery.

4) telling your friends. How did you do? I reached out to my closest friends but do you

/did you post on social media? Some of the responses I've received so far have been awkward and slightly insensitive (like a few “at least you'll get a boob job out of it"!!) and that worries me about telling others.

Thanks for any and all response

Beesie

Luckymom, sorry you've joined us here.

To your first question, DCIS diagnoses from a biopsy are upgraded to invasive cancer about 20% of the time. The risk is greater for large areas of DCIS and high grade DCIS, and lower when there is only a small area of low grade DCIS.

To my understanding, you will have to remove your Mirena IUD because your cancer is hormone positive. I've heard that some Oncologists are okay with the Mirena because the hormone exposure is so low, but that's the exception not the norm. Make an appointment and talk to your Gynecologist about it.

A BMX is a big surgery but if you are in good shape, I don't think there is anything you need to so physically to prepare, except for getting off any meds or vitamins that are contraindicated for surgery. There is a lot to prepare your house so that it's easier for you after surgery, when you will have limited/restricted arm movement and lifting/pushing/pulling restrictions for several weeks. There are discussion threads on the board that cover that thoroughly.

Everyone has to do whatever feels comfortable with regard to telling people. I told as few people as possible - just a handful of friends, my siblings and a couple of cousins. You have no obligation to tell the world or even tell anyone. I certainly did not say anything on social media. But some people do. If you don't want to deal with the sad looks and the inevitable stupid comments, tell people on a 'need to know' basis only.

Luckymomof4

Thanks so much for replying. I appreciate your time and experience and I feel very glad I found this site.

LisaK12

Yes, this site is the best preparation for learning what to expect!

Regarding (3) and (4), exercise is good for mood so if you feel like it, do it! And I also told as few people as possible -- just immediate family and a few close friends. Unfortunately a couple of family members told some additional friends/family. So I had a conversation with everyone whom I had told, about how this is my news to choose whether to share or not share, and respectfully asked them not to spread it any further. It's not a secret -- but it is personal, and I didn't appreciate having acquaintances come up to me in the farmer's market to ask me about my reconstruction. So in my experience, the fewer people, the better. Otherwise you would be surprised at some of the questions/comments you may get from people you barely know.

Best of luck to you.

Luckymomof4

thank you

JenLuc72

I was diagnosed May 15th...am also in my 40's!

Regarding IUD, I was asked to have mine removed so I did that the week after I found out. Initially I only told close friends and family and then the night before I started chemo (I am doing 12 weeks of Chemo pre surgery due to my Left tumor (Invasive Ductal Carcinoma) being HER2 positive E+/P+, Right is not HER2 positive but need to be treated for "the worse side"...) I spent the night before my first chemo treatment (started 6/10) crying & feeling sorry for myself and then just put on facebook that I was diagnosed on May15, and although it has been hard to accept this diagnosis... I will beat this with my friends and family behind me! Short and simple.

I received about 90+ encouraging posts, and since then have some periodic checks ins from some folks but not to invasive. I did not say anything else until this week when I finished my 6th of 12 chemo visits and got to the halfway mark on the chemo and targeted therapy! So got more encouraging comments. So personal choice but I had a good experience.

Hardest part for me is not the chemo itself but losing my hair....very humbling...but I go a fantastic wig!

Best wishes, this is my first post but reach out anytime.

OnTarget

Hi LuckyMom,

I'm sorry for your diagnosis!

My thoughts:

1) I don't know the stats, but my diagnosis changed from Mammary cancer with ductal and lobular features at biopsy to ILC. I also had some random LCIS, DCIS, ALH, and other things.

2) No idea sorry

3) For preparation- sure being is shape is great. I had my house clean, laundry done, bills paid, etc. I also think it is a good idea to literally walk through your day and make sure things are accessible (not too high up, or too low, not too heavy, not hard to open or carry).

4) For telling people- at first I only told my closest friends. Over time I became more comfortable and before I went out for surgery I told my direct reports at work in a group meeting, and word of mouth spread it to the rest of my coworkers. I was fine with that. I also realize that people are uncomfortable on my behalf and they don't know what to say. They often look for positives like "free boob job" and I don't get offended by that. I've been able to make it comfortable for everyone by being comfortable talking about it and joking. I tend to look on the bright side and tell them "no mammograms, boob job, and even some liposuction!". This lets everyone feel ok with joking a bit and then usually feel comfortable asking questions. Everyone understands that it is serious, scary, and painful, but it is just hard and not fun to talk about that part. About half of the women ask if I'll get bigger boobs. Rather than be offended, I say "YES, wouldn't you?". I was happy to explain the whole alloderm, TE placement, implants thing- I find it fascinating and am happy to share.

I've found that having this open, upbeat approach helps everyone, including me. I know my friends feel badly for me, and their interest lets me know they care.

For the surgery and recovery I had a large text list and my DH texted surgery updates on the day of the surgery, and then I took over and gave daily updates on how I was doing/feeling/what I was thinking. My friends would send uplifting messages and it was nice and low stress.

I may eventually post on FB just to tell people my (our) age to go out and get their mammograms if they've put them off!