L-MX, but no chemo/rads...how much do you tell folks

TrmTab

Sort of an odd question...but how freely do folks tell others of the DCIS and mastectomy...I don't so far.

I had 2 lumpectomies without clear margins, before the MX in June. Nothing invasive (it's DCIS) so no chemo and since I had the MX no rads...so I have the dramatic/drastic event of the MX, but am otherwise moving along health wise. Went for a cleaning at the dentist today (a local dentist who knows everyone I do socially) and when asked if there were changes in my health relevant to my teeth...I said no.

Do folks tell their dentist? or other quasi health people?

I live in a small town and have been able to keep this pretty private so far and would like to keep it that way.

Thoughts?

LAstar

I recall that my dentist did think this was relevant to my dental treatment, but I can't recall why. I think there was some issue about me being so close to surgery.

I do tell people that I am fairly close to. Yes, I get uninformed comments that I either ignore or briefly address. I would have been guilty of the same before I was diagnosed. Mostly, I let people know about my MX and my flap reconstruction because I was 42 at diagnosis and know that I will just be the first of many. My story has trickled through the community and I have been a go-to for others. They might hear second-hand that our small-town plastic surgeons are untrustworthy and they will avoid some unnecessary problems. Or maybe they will learn that flap reconstruction exists or that mastectomy is not that uncommon for DCIS. I obtained so much help from friends-of-friends and am happy to be that person for others who are newly diagnosed.

Annette47

Similarly to LAstar, I was 45 at diagnosis, and the first of the group to go through something like this so I was pretty open about it in the hopes it would get people to get themselves checked, and now try to be a resource to the extent I can. I’m not a particularly private person though so it really doesn’t bother me to have people know.

As for the dentist or other similar situations, I don’t go out of my way to volunteer it, but if there is a questionnaire that asks “have you had a history of cancer” I say yes, or since I am on Tamoxifen, if it asks for a list of medications I include it.

Really not a big deal in my experience - no one has particularly commented about it or asked me to go into more detail, and honestly, unfortunately breast cancer is so common these days that no one bats an eye about it as they all know someone who have been through it or have been through it themselves.

dragonsnake

Your doctor is obliged to protect your privacy, otherwise you may sue him/her. As for others, it depends on what kind of response you want from them. If you do not want to hear about your condition at all, inform only the ones that need to know, and are obliged to protect your privacy, for example, your boss or HR department. If your relatives have to know, ask them not to tell anyone else - they will, but at least the third party will not bother you extensively, because "its a secret". If you think that your experience may be beneficial to others - tell them,  and  try to ignore stupid comments; it's amazing how many they can come up with.

gracie22

In your situation (no drugs) I think telling or not is up to you. I did tell my dental hygienist (BMX but no chemo or antihormonals) and she was so thrown by it that I really regretted it and wish I had not mentioned it to her or put it in my health form update. Mean of me, maybe, but I dislike having to deal with other peoples' emotions about it. I am a long-time patient, and understand her shock/surprise, but it was a bit much. I get the need to disclose if there are drugs involved, but once you are 6 months or so past surgery it's your call.

TrmTab

Thanks for everyones posts. I think we all do need to strike the balance that is good for us.

As a teacher, my MX surgery in June has been mostly kept out of the eye of students and fellow teachers...and I like that.

While I may be deluding myself on this, part of why I want to keep this as low profile as possible is to keep my 81 y.o. mother from being over the top crazy concerned about me...I don't need the dentist who she also uses, asking her about me when she goes in! So some of us are strong so our children don't fall apart...for me it is my mother.

Thanks again, TT

gracie22

Same--my mother is 82 and telling her was more painful than finding out myself. If I had not needed a major surgery I would not have told her at all.

SallyAnneS

I'm in the same boat. I just had a mastectomy for a DCIS. I don't have the pathology yet, but it looks promising (fingers crossed). I am also BRCA1. At first I held the whole thing very close and told only my family and a couple of very close friends.

But my 22 yo daughter tested positive for BRCA1 as well. I felt I needed to be a role model for her. And so I have basically told everyone I know. After my mastectomy 2 days ago, my daughter posted a very silly photo of her, my older daughter, and me on FB. (With my permission) They were pointing at my boobs and looking sad, but silly. It read "RIP right boob....we are sad to see you go, but happy your human is ok."

So "we" approached it with humor and, so far, it seems to work. I got over 100 "likes." I am "outed."

eemaxx

I am an elementary school music teacher and had a BMX with reconstruction over Christmas break. I teach all students in the school, grades K-5. I had to tell my 5th graders something because I was supposed to direct their chorus concert in January and moved the date up to December before break. When they asked why, I just told them that I had some personal things going on that needed to be taken care of and that I was not going into detail, so don't bother asking. Well, now I've been off for the whole month of January and am planning to go back to school tomorrow. No chemo or radiation needed (just started Femara) so I won't look any different to my students. I'm sure the kids (especially the little ones) will be asking "Where WERE you?" I think I may just tell them that I had some health issues and I needed to rest, but that I'm doing better now. I am not comfortable sharing the breast cancer diagnosis with them. Any other teachers have any suggestions for telling/not telling students?

TrmTab

The good news is today I had my first "regularly scheduled" mammogram since this all started in Sept 2015...and I was given the all clear on my remaining R breast! When initially diagnosed, I had so many tests between Sept 2015 and Jan 2016, my MO wanted me to wait a year before another radiology test so that is why it is now...While I posted this on another board, I started Arimidex ahead of the L-MX...and the pathology at MX was that the DCIS area had shrunk...given the clear mammogram makes up for a lot of the aches and pains of the Arimidex side effects!

I still don't tell anyone...I have a fully expanded TE, but have to wait until summer for the EX. So I am a little lop-sided, L is a C and R is a D.

Only one of my students is intent on starring at my chest...???!!! I know she wants me to say something, but I'm not and she doesn't dare to ask...