DCIS facts and misconceptions

Shayne

which is why I commented that i hoped she had a BS that she could trust.  Having all the info, knowing the options, getting second opinion.....vital to making an informed decision that is in her best interests.

Infobabe

CookieMonster

On thinking on this, I have never heard of that before, doing chemo instead of taking the nodes.  

I know someone who is having nodes taken today at a prime breast cancer center.  Chemo was never advised to address this.  Where do they do this anyway?  Is there some innovative center with doctors who do this? 

CookieMonster

Here are two articles a quick search turned up:

http://www.columbiasurgery.net/2011/03/18/breast-cancer-study-could-lead-to-fewer-axillary-node-dissections/

http://www.breastcancer.org/treatment/surgery/new_research/20110208.jsp

They both specify for early stage cancer only.

I may misremember that they recommend chemo when cancer is found in the sentinel nodes, as it never became an issue for me. But the BCO article does list chemo as possible treatment if cancer is found in the lymph nodes.

The study only looked at a specific set of women, who had certain treatments.

CookieMonster

And can I say that I love that we can have this disucssion civilly, noone getting in each other's faces, being rude or being mean.

So thanks to all involved!!

redsox

The question of whether or not to do a full axillary dissection after a sentinel node biopsy shows one or more positive nodes has more to do with radiation therapy than chemo.  Patients with 1-3 positive nodes used to be considered a gray area for having radiation to nodal fields (with 4+ positive nodes definitely having radiation recommended and zero positive nodes not getting it), but evidence is increasingly supporting having radiation for 1-3 positive nodes.  If the patient has radiation to the nodal area anyway, then finding out the specific number of positive nodes is not so important, and the full axillary dissection increases the risk of lymphedema.

Of course, none of these cases would be pure DCIS.

Shayne

If it were me......Id be researching this, talking to qualified physicians in the field - because personally, id rather avoid having them all removed - living with lymphedema is no picnic!  I have a friend with a v mild case, and Ive watched her struggle with it.  But thats just me.  We all have to do what is best for us......

Infobabe

redsox

This is exactly what my friend is going through today.  She is not DCIS and it is her second go-around with with BC.

Infobabe

CookieMonster 

I know what you mean.  The moderators will boot us out if we do get obnoxious. 

Shayne

i know some people who have gotten obnoxious......but its so much easier to respect eachother.....esp considering what we are all dealing with....  right ladies?

CookieMonster

100% right Shayne.

Each of our situations is different so I think the one thing that I've learned is that I need to read up on my particular flavor of cancer and at what point it was caught and then go from there. We all try to provide useful information to others on BCO, sometimes we hit the mark and other times we miss it, usually because we don't have enough information about the situation. Heh - happens everywhere, I think.

terrikoala

Ok ladies....below is the info from my biopsy path report. Tell me what I need to know from this please. I know what the calcifications are of course. I see nothing on here that says 'stage zero' like he told me.  I see upper outer quadrant . When the BS drew the location for me he showed it about half way through the milk duct from the nipple inward so to me that is not outer?? The biopsy scar is directly 'north' of the nipple about half way up the left breast.

What is ER and PR? Is .6 cm considered large?

 thanks in advance: One week out from surgery.

Terri

----

This is the path report from my Stereotactic biopsy:

DIAGNOSIS:
A. Left breast, upper outer quadrant (with calcifications), stereotactic core biopsy with mammatome:
- Ductal carcinoma in situ, intermediate grade, solid and cribriform patterns.
The la.rgest continuous focus of ductal carcinoma in situ is 0.6 em. Microcalcifications are seen in association with ductal carcinoma in situ.
B. Left breast, upper outer quadrant, stereotactic core biopsy; -' Focal ductal carcinoma in situ, intermediate nuclear grade, cribriform pattern. Microcalcifications are seen in association with ductal carcinoma in situ.


Immunohistochemical stains for ER and PR have been requested on The results will be reported in an addendum. Dr. Kelleher

CLINICAL INFORMATION: No family history of breast or ovarian cancer. Abnormal left mammogram. Pending pathology.
Left breast, UOQ, #1 + calcs. Left breast, UDQ, 12 breast cores UOQ.

GROSS DESCRIPTION:
The specimen is received in two formalin filled containers. PART A is additionally labeled "left breast II with cales upper outer quadrant." The specimen consists of two cylindrical cores of tan yellow fibroadipose tissue each measuring approximately 2.5 cm in length, bath with a uniform diameter of 0.4 cm. The specimen is submitted entirely in C8ssettes Al and A2.
Part B is additionally labeled "left breast 12 cores upper outer quadrant." The specimen is received on Telfa and consists of six cylindrical fragments of tan yellow fibroadipose tissue ranging in length from 0.5 em to 2.3 em, all with a uniform diameter of 0.4 em. The specimen is entirely submitted in cassettes Bl and B2.

CLC

Stage 0 means DCIS, ductal carcinoma in situ.  It means the cancer cells have not broken out of the duct, nor have they changed their cellular makeup in a way that would allow them to grow outside of the duct, even if they were moved there by biopsy.

The entry point for stereotactic biopsy is just that...and ENTRY point.  The actual sample may have been over to the outer portion a bit.  I believe that the word quadrant just means that quarter of the breast, so it may be just on the edge of that quadrant, and therefore seem just above the nipple.

ER and PR refers to whether there are receptors on the outside of the cells for the hormones estrogen and progesterone.  If the cells are ER and/or PR positive, it means the receptors are present and therefore the cancer is stimulated by those hormones to grow more.  In this case, there are hormone blocking chemicals (like tamoxifen) that will stop the hormones from attaching and therefore reduce the growth of those cells.  If the cells are negative, then those treatments will be useless in treating the cancer.  ER+ and PR+ cancer is easier to treat.

Judging by what people have described here, 0.6cm is on the smaller side.  The size is not as important as the fact that it is still all dcis.  That is what makes this completely non-lethal.  You will not die of dcis, regardless of size.

Finally, keep in mind that the stereotactic pathology report is not the final word.  Occasionally, after a lumpectomy or mastectomy, the final pathology report shows other cells that weren't caught in the stereotactic biopsy.  The report you showed here sounds like the stereotactic report, not the lumpectomy report, so I am not sure which you have here...

Finally, remember that I am no expert, other than having done my own research through my dx and surgery.  But I think this is accurate.  Hopefully, if I have any of it wrong, someone will come to correct me...:)

Wishing you all the best.

Claire

CLC

Oh, I forgot...intermediate grade...

There are three grades of aggressiveness of cells...Low grade/grade 1, Intermediate grade/grade 2, High grade/grade 3.  The grade basically says how aggressive the cells are growing, as opposed to stage which says how far they have gotten (stage 0/DCIS...within duct still, stage 1...invasive but small area, and so on...).

I hope this helps.

Infobabe

 terrikoala

I agree with CLC.  It's all good.  But it does sound like a biopsy with all those cores.  Next you will need a lumpectomy.  I'm my own case, each succeeding surgery (biopsy, lumpectomy, rescission) got better and better news.  So quit worrying.  It is getting better,

CookieMonster

Hi Terri - Claire did a good job of explaining it and I agree with her explanations. I was one of the unlucky ones in whom they found invasive cancer during the lumpectomy but it's not that common to find.

Hopefully for you it's all DCIS, also for comfort for you, my DCIS area was much bigger than yours and had probably been there for 5+ years until it was found on my first mammogram.

terrikoala

Claire...wow...thanks so much for all that. You make it so clear to understand for this newbie.

That is my biopsy path and I will edit to define it....lumpectomy is next Monday and I will share that report as well. I never heard/seen the addendum for the hormone issue. Does the fact that I am 65 and very much post menopausal  mean anything when it comes to the  possible Tamoxifen treatment? I mentioned somewhere on here that I was on hormone replacement for years but it really didn't do much and when I weaned myself off I sweated and flashed no more or less on or off the HRT and still so both a lot.

Cookie monster and infobabe....very much appreciat your input/information alsol. You guys are great and I feel better just reading what you share with me.

I still need the BS to explain the EXACT procedure. Will he do this when he sees me just before surgery or should I 'prod' him now?

Onward!

CLC

I am sorry...I have only very limited knowledge of the post-menopausal treatment for er+/pr+.  I have a vague recollection that tamoxifen is usually used for pre-menopausal women and arimidex is for post-menopausal women and that the distinction is only a general guideline, but I am way out on a limb with that (not at all sure of what I am saying), so hopefully someone will come along with some experience with this.  In the meantime, you might want to look at the bco information sites that deal with hormonal treatment...

CLC

http://www.breastcancer.org/treatment/hormonal/

This is the page that bco discusses hormone treatments, such as tamoxifen and arimidex...

terrikoala

Thats ok Claire......not all of us are that O L D.....yet.....ha ha ha. I started my period very young and didn't stop until way into my 50s but the menopausal symptoms never seem to end. Sometimes I wish I could have my period back and never thought I would say that.

I have a general Lumpectomy question. Do you know what position I will be when they do it? Will I be on something like that stereotactic  biopsy table or on my back?  I know I will be asleep but if I am on my tummy again I am bound to be  very stiff in the neck like I was after the biopsy. I do  not do well on tummy with head turned to the side.

Tx

Infobabe

terrikoala

I am so proud of you.   Knowledge is power and scares away the boogie man.  

I had a complete hysterectomy 33 years ago and am on no hormonal therapy because it has a benefit of about .55% reduction.  That's point 55%.  Many studies are bearing that out now and the benefit is outweighed by the bad side effects.  Tomoxifen is very good, however, for shrinking tumors.  It saves a lot of lives under the right circumstances.

Shayne

terrikoala - youll be on your back for Lx......

CLC

I was er+/pr+ and I declined tamoxifen.  I have a real reluctance to do system wide treatments.  I am not conservative in my treatments, though.  I had a mastectomy rather than a lumpectomy.  This allowed me to avoid radiation, another treatment that seemed overbroad. 

Tamoxifen has a clear benefit.  It also has clear harms.  I think it is really an individual choice after a great deal of research and soul searching of one's own values.  I would never dissuade anyone from doing it, when my own bs was very disturbed by my own choice to decline tamoxifen.

terrikoala

Hey thanks....being on my back works for me!

LAstar

I think it would be nice to honor Beesie's request that this thread focus on DCIS research rather than one's personal stories.  We can start our own threads for our personal diagnoses, and then each of the discussions stay more focused for future readers.  Beesie has put in some serious time on this site and we have all greatly benefited from her research.  Just my $0.02 -- happy healing to all on this crazy journey!

terrikoala

infobabe,

I took hormone replacement long before they rang the alarm  bell on it. My GYN said it was up to me in continuing or stopping depending on how much it actually helped me. He said we had to weigh the good vs the bad  as to what the treatment can do for OR to you. I would rather not take any of it again unles it REALLY going to help. It would sure have to be a lot higher benfit that what you told me.

Claire,

 Thanks for the Hormone link.

Infobabe

LAstar

If we just focus on DCIS research, the thread will go dead.  

All these threads wander off to personal stories.  It is unavaoidable when a person sees the title to this thread and looks for help with their own personal situation.  If Beese doesn't like it, let her speak up. 

LAstar

She did on 7/18: 

"When I first wrote this thread I was hoping that it would be a place where women who are newly diagnosed with DCIS could find some basic information about DCIS. I also was hoping to clear up some of the misunderstandings about DCIS that we see so often in the questions and posts in this forum. On all the other threads throughout this forum we discuss our individual diagnoses and concerns; I had hoped that this thread would remain focused on information about DCIS." 

terrikoala

Infobabe and LAstar,

 Oops....is this my fault?  I thought this WAS a DCIS  thread and if I did something wrong being newly diagnosed, looking for info and support  and sharing some personal information I am very sorry. I don't know where to draw the line for personal vs clinical because breast cancer IS very personal and sometimes it helps to share certain personal information. 

Please give me the guidelines so I don't steer off course again. Again I apologize. 

Since I found this thread by searching  DCIS in all these forums can someone point me to the appropriate thread for  DCIS. As newly diagnosed I really would like to be involvedjust with those who have/had DCIS  as I begin this journey. This does NOT mean I am not totally concerned about anyone with any type of breast cancer but I am in the learning stage with surgery a week away and I need all the help with DCIS I can get from those who have been here/done that.

Shayne

Terri - no worries........

I got lots of info when i started my own threads, or pm'd people personally.  But your posting here is not a problem.  The only issue is that it gets to be 20+ pages long, and then newbies wont want to wade thru it all to get pertinent info regarding the topic of this thread..... 

terrikoala

Shayne...I still don't really understand what I posted that was not appropriate to this thread. I am newly diagnosed with DCIS so where else should I have gone?

Maybe LAstar will be able to tell me what personal story I put on here that I shouldn't have. I am feeling a bit paranoid as to what to say and what not to say.