ER+/PR+...now what??

DeeLJ

So I have been diagnosed w DCIS, 1.7mm, removed with 0.8mm clean margins.

Trying to decide what the heck I'm going to do.

My gene test was negative for BRCA 1 and 2. (PHEW!)

Watch and wait is out of the question, even tho its possible since I am only a 6 on the Van Nuys scale.

Rads or mastectomy are the choices between which I am going.

The rad-onc just told me they got the results that its ER and PR positive.

now what the heck do I do?

I'm still leaning towards mastectomy. I am not a good candidate for Tamoxifin since I already have a crazy-growing endometrium which is only controlled by a Mirena IUD (which I've had for just under a year after a huge hemorrhage. And yes, the Mirena has progesterone in it). 

I don't want lose my mirena unless my uterus goes with it.

I don't want to lose my ovaries.

If I get a mastectomy, does the ER/PR status affect my body anywhere else? I mean, mastectomy is the closest cure there is, but if I already have funky cells that respond like that, am I more prone now to other cancers? 

SHOULD I get my uterus removed?

J9W

Hi DeeLJ,  unfortunately I don't have any answers for you - since I happen to be in the same boat. I have two docs with differing opinons. One wants me to get the BRACA testing done and if positive, take out the ovaries. The other doesn't favor BRACA testing (nor do I) and isn't really sure I need to lose anymore body parts. I too have/had DCIS, grade 3, diagnosed August 2009. Mastect in September 2009. No positive nodes. Who knows what to do!

Deirdre1

Wow - no one in good faith should answer your question for you Dee (sorry) but I will say this... I had the bi-lateral mastectomy, negative BRCA and a grade 2/3... It was suggested that I remove my ovaries and uterus because of strong family history (I was not BRCA +) and after having a long discussion with myself I decided that they (genetic counselor and one of my bs) were being impractical and so I opted to not remove any more organs...  It's very scary - they tell you you have pre-invasive DCIS and then they jump to let's yank out all of your unnecesarry organs..  Too radical for me and if I had this to do all over again I don't think I would have have my breasts removed either.. I would have had the area they recognized as diseased removed and then do "watchful waiting"...  That's what I would do, but you are a whole other story and if I was starting this in the face (again) I would add a therapist to my list of specialists so you can hear your own voice more clearly... Good luck and please keep asking questions!!!  Take good care!  Deirdre

DeeLJ

Yes I know that only I can make these decisions...it is SO HARD...all I can do is hope that I choose wisely. The rad-onc said whatever I decide, it will be the right choice. I can't figure out if that is cliche or solid deep truth.

I made an appt to see the medical oncologist on July 7. I fully anticipate being told about hormonal tx etc...what I worry about is if I get the mastectomy to which I am still very committed, what will my chances be down the road of developing some other related cancer? I sure do NOT want to take tamoxifen.

Oh so hard to wait. I thnk a counselor is a good idea and I might pursue that. One more appointment I guess...my coworkers are getting all atwitter and their panties in knots cause I've missed so much work but I am not telling anyone until I am firmly on my treatment path...whatever that treatment ends up being!  I am getting all sorts of not-so-subtle questions about my absences lately...its actually kind of funny. At least something to laugh about I guess.

Deirdre1

<Warm Smile>  Let them stew Dee this (YOU) are just too important.. This is hard and I think it is wonderful that you plan to add the therapist - I believe he/she will serve you well!!!  One of the reasons I chose to have a bi-lateral (although again this was tainted so take it with a grain of salt) was to avoid radiation and Tamoxifen...  But after the BRCA was neg. I totally decided that I was done with breast cancer treatment...  That said my oncologist told me not to take any notice of the other doc's recommendation about Tamoxifen - since I had removed as much breast tissue as possible and since the risk are high for other cancers if you do take Tamoxifen he never recommended women in my situation should take it.. So take a deep breathe and wait for your BRCA results and you'll make a much better decision.... Take care, Deirdre

Emaline

If I had your situation, I would probably do lumptectomy with rads, however that is just me. If I could have, I would have saved my breast.  Everyone is different and you have to make the choice that is right for you and that brings you the most comfort.

DeeLJ

Deirdre you and I think alike. I am negative on the gene testing, if I were positive I think it would be easier to just decide on surgery.

I really just want them gone, and with them, the majority of the risk. I don't like the tamoxifen sides, and I already have a hyperplasia-ish situation w my uterus. Radiation isn't such a bad treatment but I fail to see how radiation on the inner lower quadrant of my right breast will in any way prevent recurrance in my LEFT breast. Plus that whole 'well it only skims the very top of the lung' bit was unnerving.

DeeLJ

Emaline thank you for sharing! We all have so many different paths and choices...its great that medical science has gotten to this point but so hard too, when we are left making complicated decisions.

Emaline

Have you gotten a 2nd opinion?  For something this major, especially if you are talking removal of your uterus as well, I would definitely get a 2nd opinion.

My doctor told me that if I had a MX, my chances of recurring in that breast area would be less then 5%, if I did a lumpectomy with rads, my chances of recurrence would be about 8% or less. The numbers are very close.  

Nothing done in the breast that has cancer will help deter cancer in your other breast.  Your risk of cancer goes up since you have already had a diagnosis of cancer.  However your chances of NOT getting cancer in that breast are significantly higher then your chances of getting cancer again.  It is unfortunate but we can remove everything, eat right, exercise, take the drugs that they say...and it can still come back.  The thing to remember is that the chances of that happening are really low. 

Have you had a breast MRI?  I had one since I'm only 41 and have dense tissue, so it was hard for them to see accurately what was going on.  It gave me peace of mind since my other breast came back clear.

I wish you the very best no matter what you choose to do. As I said, you have to make that choice that gives the peace of mind to sleep at night and feel safe.  

DeeLJ

Hi Emaline. Yes I have had a MRI and it was clean. I have trouble with 'small chances' because all I heard up til now was 'small chance the calcifications are anything' 'small chance the adh is anything' 'small chance we will find anything on biopsy' and SURPRISE it was a small chance but you have DCIS....I know I sound bitter but yeah, Im kind of angry that I got this stupid disease.

I don't think I will take out my uterus unless there is very good reason. Honestly, I wanted them to take it last year after a very bad hemorrhage but instead I got the Mirena placed because they said that they can't justify surgery if I can be tx otherwise.I know the surgical risks (Im a nurse) but I also have no attachment to my uterus. My tubes have been tied for 17 years.

So far I've seen my breast surgeon, a radiation oncologist, a plastic surgeon, and in a couple weeks I will see a medical oncologist. I am getting LOTS of opinions

I am hoping for peace of mind soon, and I appreciate your candor and your kind wishes!