Past post from Beesie on understanding DCIS

After reading through all of the posts, I think it's important to understand the meaning of "ignorance".  Ignorance simply means uninformed.  It doesn't mean stupid.  All of us are ignorant about many things....I am ignorant when it comes to Aerospace issues, quantum physics, etc.   But girls, I'm not stupid.  Stupid is knowing all of the facts.....knowing that they are true and clinically supported and choosing something entirely different driven soley by fear and emotion.  And girls, if anyone is willing to take that risk for those reason it is still a personal choice and it shouldn't be judged.  Now that's all I have to say about that.

This post has been bumped so many times, maybe it should be "pinned" to the top of the DCIS forum?  I agree, it's a very good intro for newbies.

I'm new here and don't know who Beesie is so would it be possible to get some published material on this? I'm sure if Beesie is an expert she will have a source I could read for myself'

thankyou

bumping for newbies

Pinkstinx, feel free to PM me. I live in Orange County, CA too and have some doctors I could recommend.

The diagnosis was dcis in situ high grade her 2 +. The surgeon who performed the biopsy said this was great as it was confined in the duct, etc. However, she did not explain the HER 2 + and hormone - components, and how they come into play, only to say it was good to have HER 2 rather than the hormone +. Based on what I have read, the HER2 + means its a fast growing cancer, that may be receptive to some of these meds.

I'm not an authority on this HER2 stuff, but here's my opinion which is worth the price you're paying

First, I think a lot of cancer doctors will find something, anything, positive that they can tell you about your diagnosis. I've heard women with rather late stage cancers tell about how their doctors told them how lucky they were to have that particular cancer. I guess there are some positive aspects to a lot of situations, but sometimes I'm a little dubious.

That being said, there really are some positives to HER2+, apparently the main one being that Herceptin is a very promising new treatment. I'm not sure it's used if you have true DCIS (stage 0). You should ask the docs about that. (In fact, I don't really know why you were tested for HER2 if it's believed you have true DCIS. But that's another issue.) 

Anyway, I'm getting another opinion tomorrow, and want to ask GOOD questions, so that I have a better understanding of what I'm dealing with. She never said DCIS could end up being invasive, or what all of the variables are.

Beesie's post says that "DCIS can become invasive." I'm not sure that's completely accurate, and I'm not sure even medical professionals know exactly how this works. I believe what may be happening is this -- in an area where there's abnormal activity (DCIS) going on, it's more likely that increasingly abnormal activity (IDC) will begin to occur. In other words, the DCIS doesn't "turn into" invasive cancer, but the invasive cancer develops in the region where DCIS already exists. It's kind of like a part of your breast has become a bad neighborhood. And the doc wants to bulldoze it. ;^)

So what they do is they take out the DCIS area, with a good margin, because then they're removing the whole area where the abnormal activity is occurring in order to prevent activities from occurring that are even more abnormal than what's already going on.

She stated that she couldnt tell what treatment I would need until mri came back, and then basically said until she was doing surgery, and able to check sentinal nodes, and surrounding nodes. I am really confused.

Ok, here I really do understand what's going on. The reason they do MRIs is to see if there's any potential cancer that the mammo might have missed. That's because when they do surgery, they want to be sure they get everything. 

So it might look right now that all you need is a lumpectomy, but the MRI could show more lesions, and possibly lesions in the other breast too. If that were to happen the whole treatment plan becomes different -- maybe a bigger lumpectomy, or maybe a mastectomy is recommended. (And I should add that finding more stuff isn't too likely, but they want to do the MRI to be sure.)

So let's say the MRI doesn't find anything else, which is probably what will happen. The surgeon will then do a lumpectomy and will take out what's called a "sentinel node." All the tissue removed from the breast and the sentinel node(s) get biopsied.

This is the point at which they can really tell what's going on with about 99.99% certainty, and it's the final post-surgery pathology that will dictate the rest of the treatment. A biopsy is a good diagnostic tool, but it only tells the tale of what's going on in the tissue that was removed, which is only sort of a sample. They don't know for sure for sure until the entire tumor, and the node(s), are biopsied. 

Once again, usually the pathology of the lumpectomy and node give the same results as the biopsy, but sometimes there's more going on. And that's why the doc says she won't be able to give you the full treatment plan yet.  

Also..I am having a lot of pain in the breast, and under arm.. This pain has existed for years, but always ignored by everyone saying that cancer does not hurt! I live in Orange County, and just don't know where to go for a solid and honest opinion along with a reliable doctor. What are the best questions to ask..would it make sense to ask how many surgeries they have done with this diagnosis..what types, and the outcomes.

I sent you a private message about this.

I just lost a new job due to this diagnosis, am having to move, and financially buried.

Were you an actual employee, or a contractor? Because you absolutely can't be fired because you have cancer if you're an employee. With contractors, the story is different. Please let me kow because I have a friend who is an outstanding employment law lawyer in OC and she will tear your former employer to pieces.  

I don't know how to manage all of these things and remain positive, as I know I must! I have constant nausea, it's really hard to eat anything.

Here's what you absolutely must understand. You are NOT on the Titanic. Unless the tests come back with new info, which is pretty unlikely, you have a very treatable condition. Print out your post and keep it, because I promise you when you read it a year from now you will see how far-fetched it sounds and you will laugh.

Yes, you have cancer, but you almost certainly have an early and very treatable cancer. You're going to live to be an old woman (unless you worry yourself into an early grave) and you're going to die of something entirely different. 

hi marie, and ladies.

being a "newbie" had no idea that there was a protocol regarding posts. i was so excited to find this site, didn't think to look up the rules before i posted.

to all that have any type of problem with what i wrote and where  i apologize. you all are so great to share your personal experiences...sincerely appreciate that.

marie, providing me with the rules would help to educate me on the right way and wrong way to do things here. i will go back and read the "rules" to ensure this doesn't happen again. 

i accept your apology, and yes, it kinda does seem rude.

my intentions were in the right place. i see now my posts are in the wrong one.

pinkstinx,

I will not apologize for the internet's falicy of not being able to give one the other's intentions. 

I am glad you found BCO as it has helped many women and men who have been dx'd with this disease.  I wish you well.

Bounce

bump