DCIS facts and misconceptions

Thank you so much Beesie.  There have been so many of us newbies here recently and while we can find so many of the basic questions answered, this post everything into a nice neat post. 

<thumbs up>  Once again you are a gem!  THIS should be printed out and handed to eVERY person who is dx'ed with DCIS.... Thanks!

Wonderful - thank you Beesie!

bump

(I wonder if this could be made into a "sticky" post. I think it's invaluable for women who have the beginning questions on DCIS?)

WOW, you know your stuff.....I am consumed as of last week to find anything and everything out there is to know about DCIS, as I was told last week that that is what they are lookig for on me.  I had a sterotactic biopsy done last Thursday the 16th due to them finding a small cluster of microcalcifications, BIRADS4.  Everything you stated above, is exactly what I had found plus some!  Thank you so much for putting it all together.  I plan to copy and paste and print to refer back to it.  I am currently awaiting results and driving myself crazy.  OH, question to ask you.......should I be more concerned that they have seen all the calcifications....being that I have extremely large dense breasts?  That is my fear, that they cant see it all...........of course I am still in the waiting game phase to see what this small cluster is in the milk duct.  I do however have numerous other things going on such as cysts, fibroedenomas and a few masses that appear to be B9.  AGAIN, thank you Beesie for all your info.  YOU ROCK!!  HOW ARE YOU DOING????

Sherryc,   I have had numerous mammos since August of 2010, shoing lots of different things...cysts, fibroednomas, masses etc....but when I went in the beginning of June (follow up) they found something new...small section of microcalcifications...saying this could very well be DCIS, so they did yet another US and then needle biopsy---but were unable to get to the spot needed, then another mammo, then sent me back another day for a stereotactic core biopsy.  They told me that I should know something within 2-3 working days.  This was Thursday June 16th, so hopefully by Tuesday?  Never mentioned anything abot CT scan or MRI to me.  I am at MDA in Houston as I live in Houston.  Thanks for caring!  I have had a lot of trouble trying to get anyone to talk to me about it.

Tidymom will be praying for B9

Thank you so much for all this wonderful information Bessie. It has given me a lot of comfort.

Thank you Beesie.  When I first found out I had breast cancer, but did not know the extent, I came to these boards and read some of your posts.  You were so informative and came across so confident that it motivated me to do as much research as I could for my particular situation.  Because of this I was not afraid to ask questions and I feel that I made the best decision for myself based on the information I got from researching, seeking out professional opinions and choosing the right team of doctors for me to help in my fight.

Thank you for sharing, it has made a difference in my life.

Connie, that's almost identical to the pathology report I received after my biopsy, though I didn't have anything extending into the lobules, and I don't recall "papillary apocrine metaplasia." That sounds to me like a cousin of ADH. Maybe someone else will give you some info on that.

As I understand it, you have several areas of intermediate-grade DCIS. The grade refers to aggressiveness, and yours is moderately aggressive. Cribriform is one of the shapes the cancer cells take, and it's considered one of the "better" forms to have. It appears to me you also have some LCIS, which is considered more of a pre-cancer. If all you had was LCIS it would probably be left alone, but since you'll probably be having surgery they'll likely take that out too.

As I said I don't know what papillary apocrine metaplasia is, but it sounds similar to ADH (atypical ductal hyperplasia), which is a benign but suspicious cellular change. Assuming this is correct, it's another one of those things that they'd leave alone if it was the only thing they found, but they'll probably take it out just to be sure.

Probably the surgeon will want an MRI to be sure there's nothing elsewhere in your breasts that was undetected in the mammo, and there may be an ultrasound too.

If was going to bet, and if nothing else is found in MRI or ultrasound, I'd bet that it will be recommended that you have a lumpectomy and sentinel node biopsy. Assuming the nodes are clear, radiation will be recommended but no chemo. And, depending on some other stuff such as the estrogen receptor status of the tumor, Tamoxifen may be suggested or recommended.

If all the above turns out to be true, you're like me -- someone who got the "best" kind of breast cancer one can have. Easily treatable with few long-term consequences and a low recurrence rate.

I'm sure someone else will tell you more (and may even disagree with me), but the real answers will lie in further tests down the road. Keep us up to date, ok? 

LCIS is lobular carcinoma in situ. Same as DCIS but in the milk lobes rather than the ducts. I don't know why it's considered less serious than DCIS, but apparently it is.

Sentinel node biopsy (SNB) is the removal of one or more lymph nodes under your arm to check to see if they have any cancer cells in them. They do this to see if there has been any spread of the cancer that wasn't otherwise detected. "Sentinel node" refers to the fact that they do something to figure out which nodes are the ones draining the breast area -- the closest ones are the "sentinel" nodes. Those are the ones that are removed and biopsied.

A lumpectomy is almost always a very minor surgery, but the SNB is slightly less minor. While I wouldn't say it's a big deal, there's more discomfort from it and more recovery time than from the lumpectomy.

Given the size of your tumor, 5 mm, I'd say there's very little reason to think you'll need reconstruction. Mine was twice that size and while my lumpectomy breast is now a little smaller than it was, the difference is very slight. I can't imagine being vain enough to care about the amount of size change I've experienced. Hardly noticable. 

Let me give you a page where you can read about IORT. It's available at USC, which might take Medi-Cal. http://www.breastcanceriort.org/

I'm afraid I don't know a lot about Medi-Cal and nothing about Venice Family Clinic. I think if I were you I'd contact the local Susan G. Komen affiliate to see what resources they have. http://www.komenlacounty.org. On one of their web pages they list the organizations to whom they have given grants, and I believe many of these organizations may be able to help someone like you. (Venice Family Clinic is one of the organizations listed there.) http://www.komenlacounty.org/grants/current-grant-recipients/ 

Connie, you don't need to worry a lot about time going by. August 2 should be fine. If what you have is pure DCIS it's not a major issue. As someone said on another thread, "You're not on the Titanic."

Although it's certainly possible you could get "substandard treatment" at Venice Family Clinic, what you're going through is very common, and doctors deal with it all the time. If you had a complicated case, concern about substandard care would be warranted, but I don't think your case sounds at all complicated. It's the most common kind of BC there is.

That being said, you DO need to advocate for yourself and stay on top of things. That's one thing that a family doctor will do that Venice Family Clinic probably will not do. You have to take more responsibility than a person with insurance would have to take.

Don't worry. You're going to be fine as long as you continue to follow up.