New York, New York

Cookie,

 Sorry to hear about your burns and your cousin. Just wanted to thank you for organizing this gtg.

See you at the Hudson stand on the 3rd level.

((cookie)), sounds like your having a really hard time! So it sounds like tonight will be a great distraction. For some strange reason I thought the get together was last weekend and not this weekend. I've been really loosing my memory lately, guess I should start slowing down a bit. My elbow is feeling better, so I feel up to treking in, but I got invited to a surprise 30th birthday party tonight. I'll definintly meet up with all of you at the next gathering. Hopefully we'll get together before the summer, but I really love the Long Island idea. There is so much to do out here.

I have my 6 month follow ups coming, and I'm turning into a nervious wreck. I have my mamo and ultrasound on February 3rd, and oncologist on the 9th. Just keeping my fingers crossed.

Have fun tonight!

Thanks, Cookie, for planning another lovely evening.

And happy birthday!

I can no longer find the blog link to the LA Times article (as discussed last night), so either I'm being dumbass or it's been removed. 

For the hell of it, here it is:  http://latimesblogs.latimes.com/booster_shots/2010/01/breast-cancer-dcis.html

Beesie's response in the DCIS forum, which is considerably less emotional than mine would have been (ah, the benefits of no longer being in the thick of it!):

 - From the thread "Should I feel lucky?"

Beesie wrote:

sweatyspice, thanks for posting that link.

What interests and concerns me most in that article are the following statements: 

• "...most of the time DCIS is a low-grade tumor that is best described as something between normal breast tissue and breast cancer."    This suggests that most DCIS is grade 1; where is the support for this statement?  Certainly it's not what we see on this board.  I have tried many times to find out what percent of DCIS that is diagnosed is grade 1, grade 2 and grade 3 and I have had great difficulty finding this information.  I have found one study that reports on this, but it is from 2001, not as current as I'd like.  Still, the conclusion from this study is exactly the opposite of what's being said in this article: "Of the screen detected lesions 28 (13%) were low grade, 40 (18%) intermediate grade, and 153 (69%) high grade.  Of screen detected lesions 186 (87%) were necrotic and 29 (13%) were not. Of the 151 symptomatic lesions 24 (16%) were low grade, 34 (23%) intermediate grade, and 89 (61%) high grade. Of symptomatic lesions 112 (75%) were necrotic and 36 (24%) were not necrotic.... CONCLUSIONS - As most DCIS detected at screening is high grade and necrotic, aggressive investigation of suspicious microcalcification at mammographic screening is advocated. "  http://jms.rsmjournals.com/cgi/reprint/8/3/149.pdf

• "It is entirely clear that much DCIS either would not develop into invasive disease or would do so much later in life, perhaps never becoming clinically relevant."  What total crap!  It is entirely clear that this is not the case.  This statement is true only as it relates to low grade DCIS.  Read any study or the report of any legitimate breast cancer expert and they all explain that the studies showing low levels of progression from DCIS to invasive cancer are based on an analysis of low grade DCIS only.  They also all say that when it comes to high grade DCIS, the risk of progression to invasiveness is unknown but is certain to be much higher.  I have analysed a lot of the data on this and posted it here before. When I finish writing this, I will find that post and bump it up.

"The relationship between DCIS and invasive breast cancer remains unclear..."  This is misleading and only partially correct.  What is known is that the vast majority of IDC starts as DCIS.  From the American Cancer Society: "Invasive (or infiltrating) ductal carcinoma (IDC) starts in a milk passage (duct) of the breast, breaks through the wall of the duct, and grows into the fatty tissue of the breast."  Hmmm.... sounds like it starts as DCIS, right?  So doesn't that mean that DCIS is in fact a pre-invasive cancer, not a pre-cancer? 

As for changing the name of DCIS in order "to remove the anxiety-producing term "carcinoma" from the description of DCIS", doesn't that seem just a little condescending?  These poor women diagnosed with DCIS worry too much, so let's not tell them that what they have is cancer. Maybe another option would be to better educate patients and doctors so that women diagnosed with DCIS better understand their diagnosis and therefore don't worry so much.  No, why do that when a simple name change can solve the problem (and create new problems like under-treatment of a potentially serious condition).  I find it interesting that other types of cancers that have in-situ stages don't seem to face this same debate.  Bladder cancer, skin cancer, thryoid cancer, cervical cancer and cancer of the larynx are all examples of where there are in-situ cancers and there's no debate (as far as I know) about these in-situ cancers not being cancer. Is the problem with DCIS simply that it's being diagnosed too frequently and that's why some in the medical community would prefer that it not be considered a cancer?  You have to wonder....

_________

Sweaty again: 

I'd also like to emphasize that the article linked to is NOT from the LA Times, but the LA Times blog (and here are the author's credentials  http://latimesblogs.latimes.com/booster_shots/2008/11/shari-roan.html )

I tried to read the original article which was referred to, but the source material costs $32 per view by the general public.  http://jnci.oxfordjournals.org/content/vol102/issue1/#IN_THIS_ISSUE    leading to   http://jnci.oxfordjournals.org/cgi/content/full/102/1/8

It seems to me that this all most likely comes out of the recent NIH "State of the Science Conference" on DCIS, held in Bethesda, MD back in September.  http://consensus.nih.gov/2009/dcis.htm

I've watched the archived video of the three day conference in its entirety - twice.  The last time being "How Sweaty Spent Her Thanksgiving Weekend."

The "Public Advocate" at the conference did not make me happy.

And Dr. Carmen Allegra, referred to in the LA Times blog as "she," surely appears to be male on camera (on the dais at the DCIS conference) as well as on his employer's website.   http://www.medicine.ufl.edu/hemonc/allegra.asp

I feel like I can pretty much teach a CME class in DCIS at this point, and sloppiness, especially sloppiness that downplays real danger, pisses me off.  As with much of this, if I remember correctly (too lazy to find the source material right now), DCIS diagnosed in younger women is more likely to be aggressive. 

I know that most women don't spend hours upon hours on the learning curve, and therefore I think it's irresponsible, in a medium targeted to the "younger" bc audience, to lend one-sided support to the idea that their DCIS may be relatively harmless.  Certainly, if I had any believeable inkling of that in my case, I would NOT be having surgery. 

I've educated myself far too much to be willing to simply walk away from 2 areas of Grade 3 DCIS, one with comedonecrosis.  None of that is discussed by the LA Times - as if it's rare.  The two areas might be rare, but the aggression level is not.

Getting off soapbox and into the shower.

I think it is always important to look at motive when looking at reports like this. Doe we as women need a name change for DCIS? Will it make us feel better? Are we that fragile and hysterical? Umm no. But a reclassification can result in a huge shift in insurance coverage for treatment and monitoring as well as impacting coverage triggers for cancer specific policies and disability claims.

I hate to be all big brother-ish but the insurance industry has clearly declared war on survival, it is expensive to keep us alive. I can't even begin to add up what bc/bs has been paying for me since 2002, but I am sure it well exceeds the $7000 in group premiums I pay them each year.

If DCIS stops being considered a cancer then reconstruction for surgery related to excision and PMX and PMX itself may fall outside of the scope of the NY and Fed Laws requiring coverage. Those laws seriously limit the insurance companies ability to invade and second guess the decision making process.

There have been a few other policy shifts that went under the radar recently including a recommendation on reducing prostate screening and doing away with the blood test for prostate cancer markers. I think the issue goes well beyond just an attack on women, It is an attack on diligence and on people who are "lucky" enough to catch their cancer early,and to weed out us undesirable with family or genetic histories that put us at risk and make diligence so important. Insurance companies have recently been banned from using genetic markers as a cause for denial of coverage or premium decisions.

Sadly, I think we have just become too expensive and we will see lots of "studies" (that if we dig far enough are likely funded by insurance industry SIGs) which cast doubt on treatments and detection, as a means of producing a chilling effect in the media and in our treatment decisions.

No one would be happier than the insurance industry if early detection went away and if early interventions went away. Think about our table last night. How many of us would likely not have been there if our early cancers were not detected. How many dollars do we translate to in the eyes of the insurance companies?

I can guarantee you that keeping me here cost the insurance company more than the dollars they spent on my Aunt Maureen who was died at 40 in 1978, she had only been diagnosed a year before. My cousin (her daughter) is alive today for one reason, my BRCAI test results, without those results (even though her mom had died from it and our only other aunt also had it and 4 of the girl cousins out of only 8 had already had invasive cancers not once but twice each before age 35) she did not qualify for high risk monitoring. Because of those results she did qualify and on her screening what turned up? Cancer, and 12 positive nodes, she was only 36. She has been through hell and back and through all of this she says it all sucks but not as much as my daughters growing up without a mother. Without the detection, her daughters would be the second generation to grow up without their mom.

This is a real battle so please don't put your soap box away.

It is more than our breasts at stake, it is our lives and the lives of our daughters.

Bigapple - the strange thing to me, because I thoroughly disagree, is that there are lots of DCIS diagnosed women who want to change the name in the service of reducing anxiety.  I'd guesstimate the debate is running about 50/50 for and against.

The name change thing may have been the hottest topic at that national conference, which also pissed me off.  Rather than spending time, money and brainpower on understanding the disease, lets focus on whether or not to change the name.  AARGH, in my opinion.

No one I know of has raised your points so far.....which is extremely interesting!  Thanks for expanding the discussion.

Confession time: When I was in Ireland for 2 weeks,I did not have a single beer,nor any stout.

I am a poor excuse for an irish Jew.

Wendy -- I fear there is a lot of truth to what you wrote about insurance companies looking for reasons not to pay for treatment.  I was originally diagnosed with DCIS and told by my first surgeon not to worry, it's practically nothing, DCIS can be there for years and do nothing bad to you, etc, etc.  This to make me relax about waiting three weeks for a lumpectomy.  My biopsy showed the cells to be cancer cells (not something else), necrotic, grade 3.  Too small a sample made it seem like the tissue was not HER2 positive.  Pathology after first lumpectomy: invasive cancer AND Her-2.  I had Mammo, biopsy and MRI prior to lumpectomy and none showed IDC.   I don't know how changing the name of it to something without the word cancer would have made it any less of a cancer.   

Sounds like a fun night on Saturday!  Sorry I had to miss it.  Alas, I'm also out of town in March (my birthday is March 18 and we are going to Atlantic City for a long weekend to celebrate).  What date are you looking at in May?  I'd love to meet then.

Happy Birthday Cookie!

How are you doing Sweaty (re: countdown to surgery)?

Lilah

 Afternoon..

Eileen so nice of you to organize this.

Francine

Hi ladies! It was nice meeting you all. I had a great time.

Hugs and good thoughts to Sweaty and OG

Can I just say.....this is TOTALLY SURREAL!!!!!