Stupid things people say

Mostly I ever only got the "you're lucky they caught it early", which is well-meaning, but made me want to say a) "do you think I'm not aware of how lucky I am?" and/or b) "If I was so lucky, I wouldn't have had it in the first place".

Beesie -

I really LOVE your response, although I'm not sure I would have the nerve to use it, LOL. I would probably just block them from my FB. Thankfully I don't think I have any friends that are that insensitive.

I would just write "Thanks for the information" and not answer any more e-mails from her.

Romyles,

Could I ask why you chose to have a mastectomy? I'm meeting with the surgeon on Wednesday and have been considering it, because of my family history and high grade DCIS. Not sure which way to go unless the doctors have a firm opinion.

Mayanne I did the same thing. I told my sister, mother and spouse. I have an 11 year old son that I had to hide it from until I knew more details...that was very difficult in the beginning as I would be fine one minute then crying and depressed the next. I chose BMX for a multitude of reasons but I had suspicious areas in the non biopsied breast that they could not easily reach...near the sternum and ribs which meant If they did a surgical biopsy of that breast I would most likely be very deformed. I am now 7weeks out and just today shared with some friends because of all the Amy Robach negative talk. I don't know that I'll ever feel comfortable talking about it but I also have realized that I want to talk to newly diagnosed women and have found that to be comforting in that Ifeel like it gives my situation a purpose. As for your husband he needs an outlet. My poor sister finally broke down on me 2 wks before surgery. We are both in the medical field and I was unloading myself on her like I would a patient I referred to her. She finally told me that she couldn't deal with her own fears. That opened doors for us in the areas of communication...she was my rock but she also needed support.

Romyles i will be having a BMX can you tell me about it...drains..how you could move your arms...help you needed etc. if that is okay?

lindacam,

My surgery was about 6.5 hours long. I had TE's placed after the BMX. I had terrible post op vomiting so it makes it hard for me to say how the first 2 days should have been. I vomited every time I woke up for 36+ hours (I told them I didn't handle anesthesia well but they must have not listened). My chest hurt terribly every time I vomited(I'm not sure it would have hurt so bad had I not been vomiting). I had 4 drains. 1 was removed at wk 1, another 2 at wk 2 and the last at wk 3. My PS would not allow me to shower until all drains were out and the areas scabbed. I was assured that he had the lowest infection rate and this was one reason so I went with it(I have a hand held shower head so I did at least bath waist down without telling him). I will be honest and say in the first 3 weeks I felt hopeless. My mind was saying if this is what it's going to be like I wish I had not had reconstruction. BUT a friend from church had just gone thru it last year and she told me I would feel some better after the drains came out and that the TE's would begin to feel less foreign. I felt better a few days after the last drain came out. And now I'm 7 wks out and had my last fill 2 weeks ago (the last one was as bad as the first one because it stretched me to the max) and I can say I don't think about the TEs every second of the day. I slept in a recliner for the first 4 or so weeks and now sleep on a wedge (again this is something my PS says he doesn't want me sleeping on my side--not sure why but I'm going with it which means I'm not sleeping real well). It gets better and I no longer feel hopeless and look forward to having the exchange and am glad I had reconstruction. The only surgery I have had was a gallbladder removal and I was thinking I'd bounce right back like I did with it---not possible. Its a major surgery and compared to a gallbladder there is no comparison. Just be prepared to accept help, take your meds when you hurt and know that there is light on the other side. If you're like I was you have the attitude this is what it takes to get rid of this and I can do it. I had that attitude going in and kept it (even when I felt hopeless those few times I still realized I had made the right choice). My nurse practitioner who is a breast cancer survivor told me when I said firmly that I had decided to have the BMX instead of a unilateral "you've made your choice and nobody has a right to ever question you about it. Don't look back" I haven't looked back once. I still battle the grief and realization that my life has changed but I wouldn't do it different. As we all know our life changed when we received the diagnosis so it's a reality no matter what treatment we choose. Hope this helped.

I totally agree.  I have also only told the people closest to me, with a "secrecy" clause.  Still feel I've told too many people.  If this should, sadly, become something that is obvious to the World, well, then, that's another thing, and I would need all the love and support from everyone.  But we're not there yet.  There's a very good chance, right now, that I will treat this, be done with it, and never have seemed sick..  I appreciate being with all of you in this, but, do not, in the World at large, need to be the "cancer lady", just yet.  There is no reason, for instance, that my 9-year-old neice needs to have bad dreams about what bad things in the World may happen.  So when I run into people, and it's the first thing on my mind, I find myself just naturally taking a pause and keeping it to myself, for now.  If I need "everybody" support later, in the worst circumstanses, I can deal with it then.

So long as it's only DCIS, you shouldn't have much difficulty keeping it discrete.

I was in another cancer site's chat room and we were talking about our treatments. I mentioned I had a double mastectomy for my DCIS. A gal that had a BMX for her triple negative cancer said something like" You had a BMX FOR ONLY DCIS????"

I was floored. I told her she was rude and explained a few reasons why someone with DCIS would have a BMX.I wish now that I had remember more. She had no clue how derogatory she sounded. I realize that triple negative BC is much worse than DCIS, but it was like there was a lack of respect for people with DCIS, like it is getting a wart removed.

Hello,

to be honest I don't think anyone can ever say the right thing to me when it comes to bc. I pretty much feel reactive towards the tiniest of comments made towards my diagnosis. I've been raging mad for a while about this whole bc thing...yes I have a very sucky attitude...I hate everything about bc and I'm not going to pretend otherwise. When I went to the optometrist I was asked several times if I had diabetes...I said not...she asked again...I said not. I told her I had been tested several times and I didn't have it.....eventually I told her I had had breast cancer just to change the subject. I wish I hadn't because I felt vulnerable about it as I always do when I tell people....I hate it when they look at my boobs just after I tell them. I wonder if people look at a man's crotch once he tells them he has been diagnosed with testicular cancer or prostrate cancer. Anyway she sent me to an eye surgeon and while at his office the nurse there asked me about my medical history and I told her I had bc and she asked me if I had had chemo and I said no and she said :"Oh well at least you're still here".......what the heck? She then looked straight at my boobs and asked what treatment I had done. I told her a mastectomy. I then said that I didn't think bc had anything to do with my eyes and she said: "Cancer has to do with EVERYTHING"..... I wanted to slap the beep right there and then. RAGE.....PURE RAGE sets in as I speak of this. Call me melodramatic but I don't think she needed to be so pathetically insensitive. I beeping know getting cancer is not a good thing ...it's one of the worse diseases a person can get....I GET THAT....HELLOOOOOOOOOOOOO....but I do NOT need some insensitive beep like her telling me that....especially when she did it with a self- satisfied smirk on your face. Then I walk in to see the eye surgeon and he looks at the report she prepared for him and then whispers something under his breath....I guess men get a bit embarrassed to say breast cancer out loud. .....and he too looks at my boobs and looks away.

I'm hoping this anger subsides eventually because I have become extremely defensive mainly due to my lack of patience with people's lack of empathy.

Hello Bettylovestrees! Nice to see you, I haven't seen you for a while!

I am so sorry that you've had these awful experiences since your surgery. I can feel how upset you are.

I haven't had too much of the insensitive remarks, just one woman who said I didn't look like I only had one boob! I just laughed at her. The stupidity is astonishing. Maybe I should have just pulled out my almost 1kg of silicone and throttled her with it!

I joined a BC group very early on, in fact I went to my first meeting before my surgery because the McGrath breast Nurse here encouraged me to go. I have to be honest, I really only went because I didn't want them to think me rude for not going, after they had invited me. I was new to this small town, and didn't want to step on any toes. I know this isn't for everyone, and I really never thought it would be for me either, but it has actually been very good for me. Both for making wonderful friends, and giving me perspective. They took me under their protective wings and helped me, when I knew no one in this new area.

We meet once a month and have about 12 or 13 who turn up on a regular basis. We go on outings occasionally, but BC is actually rarely discussed, unless someone has a specific question or wants to talk about it. We have all different Dx and stages, with none of this DCIS versus whatever, nonsense. We're there for each other, and we all just "understand!"

I hope it gets easier for you Betty. PM me if you'd like to chat!

As I said, not for everyone, but it works for me!

I agree cinnamonsmiles, that nonsense floors me too. I am very much aware that DCIS is different to the other staged cancers, but until there is a better way to treat it, we are all lumped into the same horrific surgery options.

The call back, biopsy, initial Dx, and even the surgery, is exactly the same for all of us, collectively, we all know and feel that overwhelming fear, that changes us. It isn't till that final pathology gives us that Dx, that our path takes a different turn. In saying that, it isn't a total reprieve either. I know I dodged some terrible bullets, but I still took a hit.

Fortunately, this way of thinking isn't too prevalent. I have some wonderful friends who are stage lV, and others who are still in treatment for other stages, they have absolutely no issue with me, or my Dx.

When I was first exposed to all this DCIS versus, whatever, I had to wonder if people look down on a triple bypass, if they had a quadruple bypass! Osteoarthritis if they have Rheumatoid! Paraplegic if they are a Quadriplegic!

Hi romyles! When I was first diagnosed, my Surgeon took time to explain what I had, and actually said that "If you are going to have BC, this is the type to have!" We won't be absolutely sure till the final pathology comes in because there is still a possibility of IDC, but if it is pure DCIS your prognosis is excellent.

I totally agree with you about being changed, mentally as well as physically. I felt like I went through a metamorphosis. I definitely felt a shift, but not in a bad way. I really don't sweat the small stuff any more, and have learned to avoid stressful situations because I just don't want to get involved in crap any more. I am very lucky that I am in a position where I don't work now and I had just made a huge move to a little piece of paradise, a few months prior to my Dx. So I don't have a lot of the pressures that so many here have.

I have to be honest and say that I really don't have any issue with the change in my body. My Mother had a Radical Mx and axillary clearance without reconstruction, in '94, just 4 months after my Dad passed away.

I believe that the way my Mother dealt with her surgery, which was with grace, and a wicked sense of humor, was what made this an easier transition for me.

I too, have had cancer scares before, just caught cancer of the cervix by a "bees dick!" sorry, but I love that description! when I had just had a baby in '78, but nothing has come close to the impact of this one.

The fact that I am 60, with a wonderful supportive husband who said, "You don't need 2 boobs to be gorgeous!" when he saw my chest for the first time, the morning after surgery, has a lot to do with it too.

I have come to the realization that as much as people try to empathize or sympathize, the only ones who "truly get it", have walked the path!

Thank you ladies for these posts. It is really such a comfort to read these experiences. I had bilateral mastectomy with TEs 3 weeks ago. The most common comment I have received is "You look SOOOOO well". I've been told by one friend that I look too good to have had surgery.

It makes me feel like a fraud. And that I can't even discuss the emotional roller coaster. That it's more than "nothing" but that it is obviously less than "catastrophic". It's awful feeling that I can't justify how distressed I feel about it sometimes just because I look so well.

My sister who had breast cancer is now getting her ovaries removed (prophylactic). I am only just coping with losing my breasts I can't even think about my ovaries yet .... But she keeps on talking about the link between breast cancer and ovarian cancer. It's completely freaking me out.