DCIS questions and confusions, personal stories and issues

CLC

I am creating this thread for anyone that is just starting out with DCIS and wishes to ask any kind of questions.  This thread is in response to some confusion on another thread.  Anyone who wishes to discuss anything DCIS related, this is the spot.

There are a lot of us that have garnered way more experience on this than we had ever wanted.  Maybe we can share it here.

terrikoala

I love it....now I can't think of anything to ask.....GIGGLE

CLC

Well, that is quite alright.  Once you get your er/pr status, you may have lots of questions.  And the tamoxifen/arimidex issue will rear it's head again if you are positive.  This thread can sit quietly until you or anyone else has questions. 

howhm02l

Since you asked . . .  I do have a question.  My current diagnosis based on stereotactic bioposy is DCIS, grade 2.  It is a large area - 8cm at largest based on "extensive" microcalcifications so I will be having MX.  I am also BRCA2+ positive so I will have BMX on 8/16.

My question is about er/pr status.  Is that usually done at the initial biopsy stage or just on the final post surgical pathology?  There was no indication on the brief pathology report.  It is my understanding that most BRCA2 related tumors are hormone fed so I would be surpised if I am ER- or PR- but just wondered when that test was performed.

Shayne

they did mine on my biopsies - and it appeared on an addendum, so it must take a bit longer.  It was also on my final path after LX

BLinthedesert

Mine was done during biopsy too ... and verified after my lumpectomy.  

CLC

I didn't get my er/pr status until after my mastectomy.  I believe that some women get it after their stereotactic, others do not.  I agree with Shayne, that it takes longer.  Mine was added as an addendum.

julz4

How....they did mine on the biopsy as it was ER- & PR- they did it again on the lumpectomy. I was told that sometimes because only a small amount of tissue is used in biopsy for the ER & PR status it could of changed when the tumor was removed as they end up checking several areas of the Tumor. Thus maybe ending up being ER & PR weakly positive. Mine ended up being 100% negative with the surgery biopsy. That's what I know. Hope it helps. Most of the time there are some changes with the surgery biopsy, not all the time though. Mine ended up being 3x larger than first thought.

BLinthedesert

It depends on what kind of biopsy you have -- if you have an ultrasound guided the needle gauge is generally pretty large -- which means you get a lot of tissue (I had 10 cores of nearly 1cm in length from one area and 8 cores of 1cm in length from the other area -- the width was tiny on the order of .5mm in diameter but there were a lot of cores).

I presented with a mass, if your primary diagnosis is based on microcalcifications only (stereotactic biopsies are generally used for these as the area does not show up on ultrasound) then small gauge needles are sometimes used and you don't get enough tissue to do the staining required for receptor status (ER/PR) until after the lumpectomy.

As julz said, sometimes, ER/PR status changes after lumpectomy. 

mckenna

all the information gathered about my DCIS had to be processed from the MRI guided biopsy because the spot was so small that it was actually all removed in the biopsy.  the path report from my lumpectomy was actually no evidence of disease.  they got my er/pr status from the biopsy but like other said, i think it was later.

julz4

Terri, The ?'s will come stay with us! It's good to giggle too as some days it's hard to feel that emotion when we are going through all the stressful emotions that BC triggers!!!!

CookieMonster

THey didn't get hormone status with my stereotactic biopsy, but after LX it was stated as ER- (0%)and PR+ (90%) which everyone thought was WEIRD. Upon further pathology inspection by my MO and another pathologist they decided that I was actually weakly ER+. My oncotype score came back showing ER+ too.

There are often times changes upon surgery, because the mammos, MRIs, etc... can only tell/show them so much.

Beesie

Terri, to your question (in the other thread) about hormone therapy, as far as I know, Tamoxifen remains the only hormone therapy drug approved for use by women who've had DCIS.  For those with invasive cancer, Tamox. is usually given to pre-menopausal women while Arimidex is given to post-menopausal women.  But Arimidex is not approved for DCIS, so all women with DCIS who are prescribed hormone therapy, whether pre- or post- menopausal, usually get Tamoxifen.

I know that some post-menopausal women who've had DCIS are prescribed Arimidex by their doctors but this is 'off label'.   

There are Arimidex clinical trials underway with DCIS women. The one trial that I just looked at started in 2003 and has it's first collection of data in 2013.  This means that it would likely be another few years before any approvals would be given. 

Infobabe

Beesie

You should edit this in to your new page.  It is often brought up and no one ever seems really sure.  I didn't know that either. 

Shayne

I have DCIS, post menopausal,  and was prescribed Aromasin.....which is another AI.

Infobabe

 Shayne

You should ask about that.  Are you being prescribed "off label?"  It seems like a lot.  Your diognosis is just like mine but you also had the radiation.  Are you having any side effects?  Maybe it is doing you some good.   Kind of strange.

Dakota212

Newly diagnosed Er+ pr+ her 2-, waiting to go see the team oncologist, radiologist, surgeon, genetics. Invasive and dcis. Grade 2. Nervous. Have sister with bc x 2.

CLC

Hi, Dakota. I am sorry you have had to find breastcancer.org, but glad you found us. You have mixed dcis and idc, so you may want to check out the threads related to idc, too. Did you have a stereotactic biopsy? Did you have a mass?

ER/PR positive is a good thing, as far as any cancer can be good. It will broaden your treatment choices.

Of course you are nervous, that is really normal. As hard as it is to believe right now, it will get easier once you know your treatment plan. In the meantime, remember to take a deep breath and take it one step at a time...

Shayne

Infobabe - what does "off label" mean?  

Dont know what I should ask about.....its what she prescribed.  No SEs so far...... Im glad, I did not want to go on Tamox and worry about the SEs for that, which are scarier to me than Aromasin..... 

maize

Shayne,

Isn't Aromasin considered safer than Tamoxifen if only because it doesn't have the risk of uterine cancer?  I read somewhere that maybe the aromatase inhibitors are actually better than Tamoxifen for some women, that they work better.

Infobabe

Shayne

Beesie 

Beesie mentions off label.  It means the drug is approved for certain conditions.  But some doctors will prescribe it for other conditions not yet approved.  

There are trials for these Als going on for DCIS as they are not yet approved for DCIS.  Maybe your doctor thinks it is worth a try but Als are for invasive cancer.  Maybe Beesie can comment on it. 

Shayne

My MO said there was a study that just came out that stated Aromasin was approved for dcis, post menopausal women.  I dont have any other certain conditions that make me better or worse than tamox.   I didnt know it was anything special for me to be on it - On the Aromasin thread, there are plenty of dcis women who are post meno that are on it as well

Maize - while it is safer than tamox in that sense, it has its own SEs that are almost as bad, tho I havent experienced anything SEs to speak of, some mild annoyances, but nothing so bad I want to go off of them. 

Infobabe

 Shayne

Interesting.  Must have just happened. 

Beesie

As far as I can tell, neither Arimidex nor Aromasin are approved yet for women who've had DCIS.  

Neither the Astra Zeneca website for Arimidex nor the Pfizer website for Aromasin include any references to DCIS. 

Searching for "FDA Approval DCIS" for either Arimidex or Aromasin yields nothing.  

The following BC.org webpage was last updated on March 14th 2012 and says: "Aromatase inhibitors such as Arimidex (chemical name: anastrozole), Femara (chemical name: letrozole), and Aromasin (chemical name: exemestane) are being studied in clinical trials to find out if they are effective in reducing the risk of recurrence in people with DCIS. These medications reduce the amount of estrogen produced in a woman's body after she goes through menopause. The main sources of the hormone for those women are the adrenal glands and fat tissue, not the ovaries."  http://www.breastcancer.org/symptoms/types/dcis/treatment.jsp

The following Komen website was last updated on July 11th 2012 and says: "Aromatase inhibitors and DCIS: Women with hormone receptor-positive DCIS may benefit from hormone therapy. At this time, tamoxifen is the only hormone therapy used to treat these cases of DCIS. The use of aromatase inhibitors (instead of tamoxifen) for DCIS treatment is under study, but results are not yet available."  http://ww5.komen.org/Content.aspx?id=5494

.

Here is the clinical trial information for all the Aromatase Inhibitors and DCIS:

http://clinicaltrials.gov/ct2/results?term=Aromatase+Inhibitors+and+DCIS 

.

Infobabe, thanks for the suggestion about adding this to my information post.  I'll do that.  

Shayne

well.......not sure what to say about this.  Why would she tell me it was recently approved and put me on it?

There are also a few other women on the Aromasin thread that are dx with DCIS......so im not the only one 

Beesie

Shayne, here is the information from the FDA website about the approvals for Aromasin:

FDA Approved Drug Products   Enter "Aromasin" and click "submit".  Then on the page that comes up, click on "Approval History, Letters, Reviews and Related Documents".  You can then click on any of the letters or labels to get information about the specific change made on the date specified.

From this you can see that Aromasin was originally approved for women with advanced breast cancer on October 21st 1999.  On October 5th 2005 approval was extended for use with women who had early stage breast cancer (invasive). The most recent revision was March 25th 2011.  This was a label change to reference new contraindications.  There have been no approvals for any "new or modified indications" since 2004.

By comparison, if you do a similar search and look at the FDA approval history for Tamoxifen, you'll see that on June 29th 2000 Tamoxifen was approved for a "new or modified indication".  If you click on the review information for that date, you can see the approval letter specifically referencing the use of Tamoxifen for women with DCIS.  

So it seems clear that Aromasin has not yet been approved by the FDA for use with women with DCIS.  I don't know why your doctor would have told you that Aromasin was approved for this indication.  However from what I've read, it seems that expectations are high that the AIs will be approved, at some point in the future, for women with DCIS.  I guess that's why a number of doctors are starting to prescribe it now.  

maize

Shayne,

First doctor said Tamoxifen or Arimidex.  Second doctor said Tamoxifen.  I have been diagnosed with rheumatoid arthritis, so may not be able to take either one if they both cause joint problems.  Do they?  Actually, I have just been diagnosed with rheumatoid arthritis, but they want me to have a specialist do more tests to rule out other RA type diseases.  It seems like I'm always waiting for the "other shoe to drop".   What next?  I'm half afraid to go back to the doctors for fear they'll find something else!  Hope you don't get any side effects at all.  Someone wrote me that I have been diagnosed with "only" DCIS, the implication being, I guess, that "only" DCIS isn't that big of a deal?  IMO, two diagnoses in a short period of time is kind of a big deal.  Guess it depends on your perspective.

CLC

Maize...there are times that I write "only" dcis.  I do not intend to belittle either my own experience or that of anyone else.  The reality is life throws us challenges.  One person's pain and struggle is not really comparable to anyone else's.  However, within the context of breast cancer, and therefore within the community here at bco, we have the easiest road to travel in many ways.  Our diagnosis cannot kill us.  It puts us on alert for another diagnosis that could, but we have been spared the thought that, at this very moment, cells have gotten out and could be rampaging outside our breast.  If you venture out and read some of the threads from the stage IV forum, and hear of women dying, leaving very young children motherless, you will understand, I think, why I, and many others, write the word "only."

My dcis diagnosis was life changing.  It has been one of the biggest struggles of my life.  I have been forced to come to terms with a loss of breast and it has forced an entirely new and unexpected shift in my values, desires and needs that has left me struggling with my life.  It is not an "only" in the context of our own lives (at least for many of us...some of us have bigger fish to fry), but is an "only" as a means of being sensitive to the much harsher realities of advanced breast cancer.

I do not wish to belittle your experience.  If it is anything like mine, it is profound.

Claire

terrikoala

I see the topic has taken off and I am so grateful for you starting it.

terrikoala

Infobabe,

Being post menopausal just  in case I need it  I checked my insurance drug plan and Tamoxifen is not that costly but the the Arimidex is very $$$$ and not sure they would let me have it off label. I have a $1200 deductible before I get a med copay so would have to pay full price. HOWEVER...I should pass that deductible as soon as the 7/11/12 biopsy bill passes thru Medicare onto my retiree supplemental insurance where the deductible 'lives'.

Infobabe

terrikoala 

Tomoxifen (Big T) will not hurt your bones.  Als can.  Big T suppresses hormones in your breast but acts like hormones in the rest of your body.   If you have had a hysterectomy as many of us older ones have, it is not an issue.   But it can cause blood clots and other SEs.  Furthermore, it is of little use for women like me.