likelyhood of DCIS in clear breast

trhbfc2017

Hello All,

I struggled with the topic sentence because I am at a loss for how this happened and if this doctor is just someone that likes to scare and bully you or did my oncology surgeon really miss giving me all the info I needed before my surgery.

I had multi-focal DCIS in my left breast that were all non-invasive and low to intermediate grade in one spot and the rest were low-grade DCIS, ER/PR +. They did find LCIS low grade in the left breast as well. Again, no micro-invasions at all. Sentinel lymph node was negative for metastasis as well. So I opted for a unilateral mastectomy with DIEP flap reconstruction all at the same time. I do not know my HER - honestly I do not think they checked that?

Now this hematology/oncology doctor starts our visit out with the following dialog: "So you are here to have me treat your breast cancer." ME: "Well, I had a unilateral mastectomy so my DCIS was technically treated". DOCTOR "I am not talking about the left breast, that one doesn't concern me at all. I am talking about your right breast." ME: "That breast has come back negative in the mammogram and MRI for any DCIS - I don't have cancer in that breast." DOCTOR "NOT YET!"

The visit went downhill from there, sadly. He wants me to go on Tamoxifen to reduce my ratio of risk from 2% to 1% cumulative each year.

Here is my question - sorry for writing so much so far but I needed this to be clear. Are we really that much at a risk for DCIS in the other breast that was clear? Does DCIS really work that way that just because I had it in one breast I will DEFINITELY have it in the other?? Also, I am not completely opposed to the Tamox. but when I asked him about side effects, he laughed at me and said there are NO side effects...okay then. I am going in for a second opinion but this really worries me that I went through this entire surgery and if it really is a clinical absolute that I will get DCIS in my unaffected breast, shouldn't someone have said along the way - you should have a bi-lateral mx??

Thanks so much for any input. If I need this to be moved or if you think I should be in a different topic and thread, I am happy to know that too.

MTwoman

trhbfc, Oh my goodness, I'd drop that doctor like a hot potato! I have never read anything that says you will absolutely get dcis in the contralateral breast. He even stated that he wants you on Tamox to lower your risk from 2% to1% (so how is it that he's classifying 2% as "not yet!"). Everyone here will support your decision to or not to take Tamox, based on your personal risk profile and risk tolerance. I will tell you this, I had dcis, multi-focal like you, but ER/PR- and HER2- (no, it isn't typical to test that in dcis) . So the MO I went to see for my consult said he'd offer Tamox to me if I wanted it, but there was no evidence that it would provide any benefit for me. (I was 38, so had lots of years left to increase the 'normal' risk for my bc naïve side). I did not elect to take it (some women have SE, some not; but I didn't want to take anything without a clear benefit) and have been NED for 14 years. If every one of us who've had dcis was assured that we'd "get it on the other side", we'd all be having bmx instead of lx or umx (like me). AND, we wouldn't be hearing all this talk about 'overtreatment' (which aggravates me for completely other reasons) of dcis (i.e. by women having bmx).

So, to be correct, your hematology/oncology doctor should have stated he thought you were there for him to treat your "breast cancer risk" to the remaining breast. But he sounds like a bully and (quite frankly) an *sshole. Sorry for my bluntness, but I would never want to work long term with an MO with his 'bedside manner'.

Oh, btw, you are in the exact right thread, no worries there.

Annette47

I’m with MTWoman ... he sounds horrible!

For comparison, my oncologist left the decision about Tamoxifen up to me, and I had a lumpectomy/radiation, so still had the rest of that breast (which was known to have cancer, including a micro-invasion) as well as the “healthy” breast to worry about. He explained the side effects and told me it was up to me whether it would be worth it. We recently revisited the question as I am coming up on 5 years and he doesn’t think that 10 years of it are warranted in my case.

He explained that yes, there is an increased risk of getting it again once you’ve been diagnosed, but it’s by no means 100%. According to him, it’s about double the risk of an “average” person, which is still quite low. But if you only have one breast left, I would think it would be even lower as you have less tissue for it to develop in.

DCISinAZ

Agree with above posters; my MO said he didn't think Tamox was indicated for me because of potential side effects outweighing any potential benefits. My situation sounds very similar to yours; multi-focal DCIS (except mine was grade 3) and other great completely clear. I am 46.

trhbfc2017

Annette47

So, you did take the tamox for 5 years then? How were the side effects?

I kept my right breast as it was clear for DCIS but this doctor made it sound like I would definitely have an occurance in the unaffected breast based on the fact that I was ER/PR +. I wonder if there is any truth to that. Annette47 sounds like you have not had any issue in your other breast.

I am going in to another consult and definitely would never go back to this guy. 

Annette47

I have been on the Tamoxifen for about 4.5 years - coming up on 5 years from diagnosis in November, but I didn’t start the Tamoxifen until I was done with surgery and radiation. So far no signs of cancer in the other breast. At first I was convinced it was just a matter of time before I would be dealing with breast cancer again, but now I have reached a more rational place where I know there is a chance, especially since I was 45 at diagnosis, so hopefully have lots more years ahead of me, but I think there is at least an even chance, if not a bigger one that this will never be an issue again.

As far as side effects go, they have been very mild. Mild hot flashes from the beginning, which are getting much worse, but since everyone I know (who isn’t on Tamoxifen) is getting them too, I think it’s just perimenopause. I have had a clear vaginal discharge most of the time which is a minor annoyance. Other than that, there’s been nothing that I can specifically chalk up to the Tamoxifen. I suspect by talking to my non breast cancer friends, that much of what people chalk up to Tamoxifen is simply due to the aging process and would happen with or without it.

Aside from not getting cancer again, LOL, there have been other positives as well. My periods had been getting very frequent and heavy, and since going on Tamoxifen, they are less frequent and lighter. I was also having horrible breast tenderness that started around ovulation and lasted through PMS. That went away almost instantly with the Tamoxifen.

CamilleXO

The chance of DCIS emerging in the opposite breast is half a percent every year. So in a 5 year period your risk of getting it is roughly 2-3% - 10 year period is 6-7% - give or take. Not enough data exists about contralateral DCIS, but these are the figures I have heard given by surgeons, pathologists and online articles.

jeanwash

I was premenapausal with early stage diagnosis in left breast. Had single mastectomy and 5 years of tamoxifen. For me heavy irregular periods were the main side effect. I have bee off tamoxifen for almost 1.5 years and so far so good. I actually would have preferred to stay on Tamoxifen for more years as it gave me an emotional crutch that I was being proactive ... but the doctors cut me off.

BarredOwl

While I have also seen a general estimate of 20-year risk of developing contralateral breast cancer after a diagnosis of DCIS of "10.6%" or around 0.5% per year, the risk of contralateral disease is not necessarily uniform among all patients. Thus, a personalized risk estimate might conceivably differ from the general case, for example due to differences in diagnosis, personal medical, genetic, and/or family history (see e.g., Sackey (2016)).

In this case, in the second opinion, one thing I would ask is whether the presence of LCIS in addition to DCIS affects the contralateral risk estimate in any way.

aquilegia

trhbfc2017 - the increased risk for your other breast is mostly from the LCIS pathology finding. LCIS isn't considered cancer, but it is associated with an increased risk of cancer in both breasts. The studies I've seen say the risk is 2 to 5 times higher than for a diagnosis of DCIS alone. Tamoxifen would reduce the risk, but you could also just keep up with your mammograms and be sure to get anything unusual checked out.

I had both DCIS and LCIS diagnosed in the second of my 3 lumpectomies, but then LCIS was never spotted again. I had radiation and 5 years of Tamoxifen for the DCIS, and have basically decided to ignore the risk for my other breast, other than faithfully getting mammograms. Thus far (20+ years after my initial diagnosis), the other breast has been fine - hopefully, it will stay that way!

trhbfc2017

aquilegia - I really appreciate your post here. I am sorry you had so many reoccurances of DCIS in your right breast. I see you had the DIEP flap. How is that going for you? 

It sounds like this doctor I had was truly a bully and wanted to scare me into taking the medication. I did speak with another oncologist who said he would not recommend the medication based on my pathology if I were his wife.

I did have the test for the BRCA1 and BRCA2 and I am negative for the genetic mutation as well. 

I feel good about my decision to not take the tamoxifen or other AI drugs. I will go ahead with the screenings and keep my eye on the remaining breast and just want to get to healing well on the reconstructed breast. 

Thanks to you all that posted.