What to do, what to do.....

I can't imagine that those of us who are above stage 0 wish that you, or anyone, would do nothing so as to improve your chances of joining us. We may be mad, sad, angry, frustrated and even bitter at times but I don't think any one here would be hateful enough to want others to join us in this unwanted journey.

Best wishes, Caryn

Lady Grey,

Although I respect your right to make any and all decisions regarding your body and health, taking care of dcis is neither foolish nor self indulgent. I just attended a memorial service for a woman who died of metatastic bc. I hope you never find yourself in that situation. You are indeed who you are but what about others in your life who love you? The horrors of what my friend went through were more traumatic to her children than any perceived over reaction to dcis. I really do wish you the best.

Caryn

Okay...If you've done your homework, and you feel certain you're making the right choice, here's hoping for and wishing you the best.  

Lady Grey:

Twenty something years ago I was an educated and successful professional woman making a lot of money. I never wanted to have children but my husband talked me into it. 

It was the hardest thing I'd ever done. For the first time I was experiencing something I couldn't master no matter how much effort I put into it, and to be quite frank I did not enjoy their young childhoods. Many of my professional female friends had similar experiences -- like me, they were not used to being anything but quickly successful at what they attempted.

My sense is that this is something of what's going on with you. Sheer will and effort has made it possible for you to conquer nearly everything you've tried. Whenever someone tells you something is impossible the result is that you redouble your determination. 

I also remember one year when I was particularly interested in the outcome of a Presidential election. When I went to bed on election night, things didn't look good for my candidate but I had hope. In the morning I stayed in bed for hours surfing between news channels. I finally realized I was looking for the channel that was saying my candidate had won. Sadly, that channel never began broadcasting.

The bad news is this: there is no channel on which you don't have BC, and there's no channel or web site that will tell you definitively what you must do to cure this cancer and be sure it won't come back. And even worse, no matter how much effort and will you devote to the cause, you can't turn back the clock or make it go away.

I don't know whether that makes sense or is helpful, but I hope it does/is. 

Hey Lady Gray,

 {{{{{BIG HUGS}}}}}}} to you during this difficult time.  I remember well the build-up to my mastectomy, which was on October 20th, 2009.  

OF COURSE you have to treat it.   It's awful that you don't know for sure whether it will become invasive or not - but you definitely have clues that it will.  There is no chance, knowing what I know now, that I would let DCIS just sit in my breast, like a timebomb waiting to go off.  You have a Sophie's Choice to make in a way - but you have to make that choice to save your life.

You have to. 

And, you need to come to terms with the fact that you ARE doing the right thing. 

I had a unimastectomy almost 2 years ago.  I am still very glad I had the uni, although my plastic surgeon also wanted me to get a double, even though there was no signs of disease in my left breast.    I reconstructed with an expander/implant and a small implant on the other side to give lift and evenness.  Does it look like a breast?  Not really.   But, I'm not deformed either.  In clothes, nobody can tell there is anything different about me.  I can still wear all the lower cut stuff that I love and the only people who might see something different is somebody peeking too far down.  

I'm glad I did the uni because I still have feeling across half my chest.  I'm glad I did the uni because I have a phantom itch in my reconstructed side that has not gone away in 2 years, and I'm sure I'd be nuts if it was in both.  I'm glad I did a uni because I got shoulder problems after surgery that last to this day, and unfortunately, that is not uncommon.  I'm glad it's only in one side.  And, I'm glad I got a uni because I can still nuzzle children, husbands and dogs to my breast and feel it. 

Later, I was dx'd Stage IV, with mets to the liver.

I am now recovering from having half my liver removed, on October 3rd.   Not an easy surgery, let me tell you.  But, every PET scan I have, every test, shows that left breast is clean so I made the right choice.  

I probably started with only DCIS.  I probably had it for many years.  I was very bad about getting mammograms but there was a reason I was bad about it - I was told that my breasts were so dense they couldn't see things anyway.  Hell, why am I bothering then?  That DCIS may have been there during the last mammogram I had and nobody saw it.  Then, it burst through the ducts and became invasive.  And, it grew and cells broke off and invaded my liver.  My lymph nodes didn't do their job - they were clean.  However, even after six rounds of chemo and a year of herceptin, I became Stage IV.

I have a 14 year old son.  Is he meant to watch his mother die?  Death from cancer in the liver is not pretty - why should  my son be tortured by something that will haunt him forever?  Because, I didn't get my mammograms and DCIS wasn't seen before it became invasive?

You have a beautiful chance to save your life.  A mastectomy is not a fun thing to do, but it is not as awful as you are imagining.  You are still you.  You will still love, laugh with friends, have sex, and live a long, long life.

I write the blog But Doctor, I hate Pink.  That blog is just musings on my life with cancer - stage IV cancer.  At the time I wrote that post about DCIS, I wasn't really thinking people would read it - it wasn't a popular blog then.  It was my thoughts on a news article from a long time ago.. But, whatever I said, I remember my point was, no matter what the disease is called - it HAS to be treated.  I think, like the woman who are BRCA positive, it takes real bravery to deal with the medical world and decide to make the right choice when you don't know for sure. At the time I wrote that post, I probably would have "watched and waited."   Dumb.

I thought I was untouchable.  

I'm not.  Neither are you. 

Until October 3rd.  I had a 0% chance of living five years.  But, maybe not with this groundbreaking surgery they just did on me, I'll get many more.

And, you have the chance to live a normal life and not let this disease take over.  What if we are the same?  What if we are on the same path with the same disease? Only you get to arrest your disease before it gets to the point where I am?  Wouldn't that make a great book?  Who would be the heroine - the one who did what she had to do to live, or the one who felt like she'd be fine and pushed everything away until it was too late? 

If you could see into the future and know you are saving your life, you'd do it, right?

Well, you ARE saving your life. 

I'm firmly convinced of that.

PM me if you ever want to talk or anything.  October 20th is a good day for a mastectomy - the best people have 'em.   

Coolbreeze, thank you for posting.

LadyGrey, I remember when Coolbreeze first wrote those comments about DCIS in her blog.  I was not happy about it at all.  I felt that she was talking about something that she knew nothing about and was commenting on something that she should not be commenting on.  I was more than a little angry - and I felt many of the same feelings that you've expressed. However more recently I've seen some wonderfully supportive posts from Coolbreeze to many newbies, including some with DCIS.  I didn't know if her attitude towards DCIS had changed, but I suspected that it had and I'm so glad that she's posted here to tell you that.

I know for myself that as I've spent time on this board, and as I've continued to live with my diagnosis and treatment, I've learned a lot. I've learned things that I thought I knew before, but then discovered that I was wrong. I've changed my mind about some things. I've come to understand just how personal and unique breast cancer is to each of us.  I write posts very differently now and I'm so much more careful to not pass judgement and not present what I would do as being the correct choice for anyone else. What I've also seen over this time is that pretty much all of us who hang around here for a while seem to go through this same change.  There are a number of women on this board with whom I disagreed vehemently a few years ago and now when I read their posts, I find that I agree completely.  We've all learned new things from the experiences we've read about on this board.  We've all learned new things from our own experiences.  Attitudes changed. Perspectives widen.

So yes, what Coolbreeze wrote in her blog a couple of years ago was hurtful to women with DCIS. And two years ago she believed that the right approach for DCIS was 'watchful waiting'.  I am so glad that she's clarified that she doesn't believe that any more.  Her own experiences - and I suspect, reading about the experiences of other women over these two years - have changed her mind.

LadyGrey, my advice to you is that you find accurate, factual websites and articles and studies that talk about high grade DCIS.  Don't be influenced by anyone else's attitude or opinion or wishful thinking or by articles that talk generically about DCIS. You know a lot about your diagnosis. And you've been on this board long enough now to know that all DCIS is not alike.  So get the facts as they relate to your specific diagnosis. You want to be in control? Take control of this situation by making your decision based on facts that are specific to your case.  You don't have to like the decision you make - there's not much to like about any of the choices - but you have to know that you are making the best decision for youself based on the situation that you are in and the diagnosis that you have. That's how I found peace of mind.

I am one of those watchful waiting ladies who had a time bomb in my breast. I hoped they got it all and I would be one of the lucky ones. I learned this afternoon after my doctors appointment that the cancer is HR2+ and high proferation, which means it's very fast moving and aggressive. Now, I wish I would had gotten a mx earlier.

Dear LadyGrey,

There are only two things in this world that we are in control of.  We can only control what we do and how we let things impact us.  It took me a while to figure this out and once I embraced it the challenges I faced seemed much easier to handle.  So do what is best for you and stay positive and strong.

All my best,

KK

Hi MGM,

 I had the same diagnosis as you with high grade DCIS.  I was diagnosed in May and had my BM in August.  I too was concerned about it becoming invasive as I waited although everyone told me not to be concerned.  Good news they were correct.  However to put my mind at ease I decided to do whatever I could to make my body stronger while I was waiting for surgery.  I exercised every day up to my surgery, ate real healthy and continue to do so and took vitamins that help build the immune system.  I stayed away from bad fats and bad carbs.  I ate all organic and continue to do so.  This website has recommendation on healthy living and vitamins you can take.  Bottom line my surgery was a breeze.  I think everything has gone so well for me because I was both physically and mentally prepared for the challenge.  Exercise helps with stress as well. 

I also did the tissue expanders.  I got my last injection yesterday and am very pleased with how they look so far.  I went this route for several reasons and I am so far very happy that I did.  I don't get the implants until December.

All pumped up!

Kuvaszkid 

" Is he meant to watch his mother die?  Death from cancer in the liver is not pretty - why should  my son be tortured by something that will haunt him forever?  Because, I didn't get my mammograms and DCIS wasn't seen before it became invasive?"

could you try to be a little sensitive to those of us who are stage IV please coolbreeze?

I need to stand up for CoolBreeze on this.  She and I came to these boards within a few months of each other.  I saw the DCIS post on her blog that TheLadyGrey reacted back then and was offended for reasons others have stated.  I wrote a highly critical post of it on a thread here some time after.  But she came here to this thread to explain her current views and give advice and support to TheLadyGrey.  One of CoolBreeze's best qualities is that she is willing to listen, learn, and revise her opinions.  She was blunt and direct (as she always is) but she wasn't being offensive, and she was writing on the DCIS board. Although I will never put the problems of DCIS patients in the same category as Stage IV patients, we do have problems, too, and this board is where we should be able to focus on the problems related to DCIS. If that means making a strong plea with some strong images, sometimes that seems to be the best thing to do for someone else.  

I came back to this thread to see if LadyGrey has made some peace with her cancer and is keeping her mastectomy date.  I hope she has.

that's life, I'm sorry I offended you.  I am Stage IV too, you know.  I may handle it differently than you do.  I admit, I look it's ugliness straight in the face.  I know what will happen, that's how I best prepare.  I know some people want to gently view it through gauze curtains and that is okay too. Everybody has a different way of coping: anger, sadness, weepiness, attempts at control, submission, etc.  None of them are wrong - all are part of the human experience.   But, this board is for ALL of us.

I want to say one thing about my blog post.  I have received a lot of mail from people all over the word saying my blog has helped them cope with their illness or diagnosis (many women with DCIS), and I'm very proud of that.  The blog was intended to be a way for my family to keep up (and not call me), but kind of took off.    I use strong language sometimes to make a point, as redsox pointed out, both here and there but it's mostly a humor blog.

I never meant to hurt people with DCIS.  I was annoyed that the celebrity I was talking about had positioned herself as emblematic of all survivors (in the videos and interviews I saw) and seemed to be saying "I was back to playing tennis in a month and if I can do it, anybody can do it." It seemed really insensitive to me when I was about halfway through a year of chemo and knew I wouldn't be playing tennis anytime soon.  Yet, I always knew she had to treat her disease.  I think if I'd started at the halfway point the reaction would have been very different.

In reality, the point I had hoped to make back than and apparently missed because the opening was so strong, was that women with DCIS have a harder and braver choice to make than with somebody like me.  For me - I had invasive cancer and I had to do a mastectomy.  I can't imagine the horror of knowing it may never get invasive but still HAVING (key word) to do the hard thing.

Like I said, given a choice,  I probably would have made the wrong choice, because I'm a big coward.

Anyway, at some point, I am going to write a new post about DCIS and make that clearer because you woman, and the women who have the BRCA gene and do prophys- YOU are the heroeines in all of this.  I didn't really change my mind, because that is what I've always thought.  And, have told friends of mine with DCIS dx'd at the same time as me.

 But, I do want to add - I too was very hurt that people here got so upset at that one post and didn't read my entire blog with all the help I have believed to have given women. That one post spread like wildfire but nobody looked anywhere else.  I'd written other things about DCIS and had guest posts from a woman who described her experience - but that was the one and only post anybody from here read.  Judging an entire person - as some did - based on 500 words out of 50,000 - I didn't find that fair either, nor did I find many of the comments polite disagreement (which I welcome) and I had to delete some with foul name-calling and yes, a death threat.  

I never responded to any of it because I understood the anger although I was really sad that the true point I was trying to make didn't come across the way I'd hoped.  Obviously, as a writer I did a terrible job, and one I hope to rectify, and I'll do it with Beesie's help if she's willing.  Anyway, again, I'm really sorry to anybody it hurt - it wasn't meant to be like that.

Now, this isn't about me, so I apologize but this seemed like the only place..  I will eagerly await LadyGrey's change of heart.   

i didnt realise my post would cause offense either, but if people feel the need to defend then that is their right...i am very much a realist when it comes to this disease. and i dont sugar coat it at all. i try to give hope and lifestyle options to help we women at stageIV and I dont really want to hear a persons personal opinion on the hideousness of our death...while i was empathising (and having a much needed chuckle) at ladygrey's wit in expressing experiences that ladygrey was going through. I remember well the horrid time we go through at diagnosis, the frustration and anger. maybe people can move on now.

i have a 13 yr old daughter, and i try to keep believing that it will not be hideous, that i may die with dignity, and that she will not be too scarred.

p.s. i have dcis and idc and bone mets. I found the information on dcis very interesting.

I wish I had read a thread like this a couple years ago when last dx with dcis, before my dcis became idc. I didn't get it a few years back. I didn't see the seriousness of dcis. The doctors or surgeons didn't seem to be that alarmed by dcis. They would say, oh, you have a good cancer, it's only non-invasive cancer with a 95% of not returning. Grade 3 was concerned, but the doctors smiled telling me that my margins were wide and I was fortunate. I read that only a small percentage of dcis cases ever become idc. I thought with careful screening that if it happened again that it would be dcis and I would finally do the dreaded mx. I had the opportunity for a blmx last March. I seriously thought about it but thought the dcis breast hadn't shown up its ugly face in more than 2 years, and you would think with high grade that it would had by now. So, I assumed that the last 2008 lumpectomy successfully erradicated all the dcis cells. But, I knew I would never be comfortable about not having a recurrence until the five year mark. All to say, I'm kicking myself now for not getting the mx last March.

If I had read this thread, the emotions, heartfelt plea for greylady and your experiences, I might have done the mx. Inspite of a little misunderstanding this is a excellent thread for those dx with dcis. And, this thread perhaps is good for those dx with more advanced cancers to appreciate the hard discison dcis women face. And,  even with treatment many will follow in your shoes being later dx with more aggressive invasive cancers.

Coolbreeze, I would love to read your blog. Not sure where to find it.