DCIS questions and confusions, personal stories and issues

 terrikoala

Terri, I have read in my research that many with DCIS refuse rads so your RO will not be shocked.  I got my most sympathetic hearing from  my MO.  I think your objections to rads are reasonable and it is hard for me to imagine your MO will insist on it.

I agree that you should get a second opinion.  I don't want to try to influence you too much but you have a lot of issues that need sorting out.

 Hi Janet456,

How fortunate that your DCIS tumour doesn't get tested for estrogen status etc. in the U.K. That way you don't know if you have an aggressive cancer or not.

I am still trying to focus after seeing my oncologist for his recommendations for my new diagnosis: pure DCIS in the opposite breast. I had a few questions that I was going to ask along with my newly researched future plans when low and behold my question list just fell on the floor and my mouth hung open as he began to speak: He aplogised for keeping me waiting as the lab had forgotten some important information that he needed. He then continued to inform me that I was Her positive and that he had two recommendations, one was that the usual protocol is to have IV every 3 weeks but iny our case you have DCIS so the other recommendation is to do nothing since it was all contained within the ducts. All I could answer was "oh these babies have got to go." He  urged me not to go "jumping the gun" but that I must make sure I don't miss any mammo visits.

 You girls across the pond are so lucky that you don't get the hormonal status with your DCIS path report because they are so scary!!!

I've been following this thread with interest.

It's too late for me to make another decision if I wanted to, but wanted to note that in B.C., Canada, they don't routinely test hormonal status on pure DCIS either.

My MO gave me the choice of taking Tamoxifen, but she said it would only further reduce my chances of getting it in the opposite breast by something like 3% -- not worth it to me. 

 Mooleen

I admire your clearheadedness.  If anyone should know, you should. 

I dont blame you ladies.......think Id do the same .......

painterly, I'm completely shocked that your oncologist even suggested "the usual protocol" of an IV every 3 weeks for HER2+ DCIS.  Herceptin is not approved for DCIS.  The accepted treatment standard for HER2+ DCIS is the second alternate that your oncologist mentioned, which is to do nothing different than if the DCIS were HER2-.  

There have been a couple of clinical trials with Herceptin but they involve a very different regimen than what is done for women with HER2+ IDC. Nothing like the every 3 week Herceptin IVs with chemo. 

This trial involved 2 doses of Herceptin and tied it to radiation treatment:  Radiation Therapy With or Without Trastuzumab in Treating Women With Ductal Carcinoma In Situ Who Have Undergone Lumpectomy  http://clinicaltrials.gov/ct2/show/NCT00769379

And this trial involved just 1 dose of Herceptin, prior to surgery:  Neoadjuvant Herceptin for Ductal Carcinoma In Situ of the Breast  http://clinicaltrials.gov/ct2/show/NCT00496808

HER2+ DCIS is a bit of a dilemma.  Actually, it's a lot of a dilemma, because nobody knows what it means.  It's well established that HER2+ IDC is more aggressive, but the evidence for DCIS is not nearly so clear.  Some studies show that HER2+ DCIS is more aggressive, but other studies suggest that it might actually be less aggressive. And the strange and confusing thing is that DCIS is much more likely than IDC to be HER2+.  Approx. 40% of all cases of DCIS are HER2+, vs. only about 20% of IDC cases.  Why is that?  Nobody knows. Is HER2+ DCIS less likely to become invasive or does the HER2+ status change as the cancer becomes invasive? Several studies suggest that HER2 status doesn't change in most cases.... so how then to explain the 40% HER2+ DCIS vs. the 20% HER2+ IDC?  

The other thing to keep in mind is that the fear with HER2+ IDC is that the cancer, being so aggressive, will develop into mets. The risk of mets with even a very small (5mm or less) HER2+ IDC is quite high.  So this warrants very aggressive treatment.  But DCIS cannot develop into mets.  So even if HER2+ DCIS is found to be more aggressive, the risk is very different than the risk associated with having HER2+ invasive cancer.

For all these reasons, HER2 status often is not tested for DCIS.  It depends on the facility. It probably is useful to know your HER2 status so that whenever there finally is more clarity about this, you understand the implications to your situation.  I was diagnosed 7 years ago and back then I don't know if anyone tested for HER2 status for DCIS.  Personally I'm glad that I don't know whether my DCIS was HER2+ or HER2- because by not knowing, it saves me from worrying about something that doesn't have any answers yet and something I can't do anything about. 

As for whether you would be "jumping the gun" to have a BMX, only you can know that. A lot of women have a MX or BMX and feel that it's the best thing they ever did. I had a MX - not by choice but because I had too much DCIS in too small a breast - and even now, almost 7 years later, if I was in the same situation and had a choice, I would choose to have a lumpectomy.  It's easy to think that with a MX or BMX, all your problems are over.  But the truth is that for many women, a MX or BMX just creates a whole new set of problems.  In my case, for the first 9 months to a year, I was delighted with the MX and reconstruction. I had a really easy time of it and had very few problems, just small ones. But what I didn't count on was that the small problems wouldn't go away.  Something that seems like a small problem in the first days and months after a cancer diagnosis and major surgery, phantom itching for example, becomes a much larger problem when it's still there a year later and when it's there all the time, for years and years.  That's not to say that a BMX isn't right for a lot of women, and might not be right for you, but it's just to offer a different perspective.  I think that living with a MX or BMX is a lot easier if you go into it absolutely certain that it's what you want.  But if you are uncertain and the results are not what you expected, it can be pretty hard to live with.  Just something to keep in mind.

painterly, since you had two different primary cancers, it's not unusual to have two different types of tumors.  It's actually quite common.  Many of the women on this board who've been diagnosed twice have found that their second diagnosis was a different ER/PR or HER2 status. I've seen quite a few who've been ER+/PR+ one time and ER-/PR- the other time. And in your case, since your second diagnosis is DCIS and since HER2+ is so much more common with DCIS, it's not surprising that your DCIS is HER2+ whereas your previous diagnosis of IDC was HER2-.

You would think that if your body develops a certain type of breast cancer, that's the type of BC that it would develop.  But it doesn't seem to work that way.

I read a study just a few days ago about changes in hormone status as a tumor progresses from DCIS to IDC.  It's true that hormone status can change.  This study found that ER expression declines as DCIS becomes IDC:  Expression of ER protein from DCIS to IDC in ductal breast cancer   But when it comes to HER2 status, all the studies I've read suggest a high degree of concordance (95%+) between DCIS and IDC in samples that contain both types of cancer.  One such study:  HER2 status in pure ductal carcinoma in situ and in the intraductal and invasive components of invasive ductal carcinoma determined by fluorescence in situ hybridization and immunohistochemistry.

painterly, have you talked to a second opinion doc?  I would think that whatever the biggest and best cancer facility is near you would be a good place to get another set of eyes on your treatment, and if it comes back the same, you can always have treatment at whichever place you are most comfortable with

best of luck

Painterly - I'm glad they don't routinely test here too.  Yikes - I had enough of a nightmare anyway with the information that I was given so I can imagine how you must be feeling with even more info.

Are you going for a 2nd opinion?

Beesie - I love all the info you provide. x 

 Janet456 

Personally, Janet, I am glad to get all the information available.  I wish they did test for HER for DCIS too because although it is not applicable now, it might be in the future but it might not be possible to recover it at a later date.  I don't know how long they keep those biopsy slides and tissue.  

But I suppose it is not cost effective to test if it the results are not immediately useful.

Infobabe, you asked "Does that mean my 100% er/pr hormone status put me a long distance from IDC?"  Unfortunately not.   Or at least, I don't think so.

The fact that ER and PR status might change or diminish as breast cancer progresses from DCIS to IDC is not discussed very often.  I remember that someone posted about this a few years ago. In all my reading about DCIS and how DCIS progresses to become IDC, I had never heard that this could happen. So I decided to dig into it. It turns out that this is something that's been known for a long time however it's very hard to find studies about it or even many references to it.  This point tends to be hidden in the middle of a study that is focused on something else.  So I don't know if a lot of research has been done to understand why this happens and what the implications might be.  However, since we know that some cases of IDC are 100% ER/PR positive, I don't think that having DCIS that's 100% ER/PR positive would mean that this DCIS is less likely to develop into IDC.  Maybe if it develops into IDC, the ER/PR status might be less positive...? Just guessing / speculating here.  

If anyone knows more about this, I would love to learn more.

Joyce, it will be interesting to see if you get different opinions and/or different recommended next steps from the BS, the RO and the MO.  

Janet, thanks!   

Mooleen, good luck in October with your mammo. You wouldn't be normal if you weren't anxious before that!  I remember I started to get nervous several weeks before my first mammo on my remaining breast, after I'd had the diagnosis and UMX. For my next mammo, the nervousness kicked in only a week or so before.  Within a couple of years, it was down to the day or two before the appointment. Finally one time - I think it was year 4 - I realized as I was walking into the mammo room that I hadn't thought about it at all or worried at all. These days I actually think I worry less than I did before I was diagnosed because I've been through it once and know what to expect, and I am so much more educated about screenings and the diagnostic process and breast cancer in general. 

Painterly, good luck and it is good that you are be able to be followed by really good docs for treatment, takes a bit of the stress off of you.

stay in touch

Claire and Proud

Thanks for the words. I will wait until its been about 5 weeks and looks well healed and then try to gently tug at it but if it doesn't go away on its own or tug out easily I will definitely call the surgeon. I think I can get hold of it with tweezers. I am used to pulling tiny course short hairs out of my chinny chin chin now and then.  Charming!  My hubby offered to try to cut it with the  clippers or his tiny mustache scissors but I declined for self preservation reasons...OUCH if he grabs too much.

I need to ignore the darn thing.