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Jan 21, 2018 05:01PM
Hi all - original poster here! I wanted to give an update as I finally got in to see the gyn that my oncologist wanted me to see. She's hard to get an appt with. She's basically only sees patients that are on Tamox/AI's/have gone through chemo, and she's been doing this for 15 - 20 years. I learned a lot from her although have forgotten some of what we talked about. Anyway, I had the baseline u/s which showed a 2.8 cm cyst two weeks after I started Tamox. She was sure that that cyst was there before Tamox (did not think it could grow that fast). 2-3 months later, another u/s showed 3 cysts on that ovary with the largest one being 4.2cm. Septations shown on the first u/s, none shown on the second. She said that THIN septations are usually benign/nothing to worry about. Just had another u/s and the largest shrunk back down to 2.8cm (yay!). She said this is good news, believes they are just fluctuating due to Tamoxifen and suggests that I get another u/s in 1 year. I'm not feeling too comfortable about the 1 year, but on the other hand, I get it in that, if they were to just keep fluctuating in this manner, I'll just keep stressing out and getting ultrasounds. The interesting thing is that I hadn't had a period for the three months prior to having my second u/s where the cyst grew to 4.6cm. Then, I had a surprise period right before I had my last u/s and the cyst had shrunk. Did the cyst shrink due to change in hormones? If I don't get my period again, will the cysts continue to grow until problematic? That's what worries me about waiting a year for another u/s.
Anyway, a few things she told me:
She gets worried when a cyst gets above 5cm because at that point they can cause problems: pain, torsion, rupture, etc. (although she does have patients that have 6 and 7cm cysts and they've decided to just watch and wait. She seemed kind of ok with that). She said, if there are cysts growing, there are 4 scenarios in which she'd consider ovary removal: 1) BRCA 1 and/or 2 positive, 2) a woman who has/had high risk breast cancer, 3) family history of ovarian cancer, and 4) Tamoxifen induced cysts that are large and causing problems. She was pretty confident that my cysts were due to Tamox and that they would come and go, and so from her standpoint, this last u/s just proved that.
BTW, she said only about 30% (at most) of women on Tamox get ovarian cysts.
She also explained the subendometrial cysts that the u/s was showing. Tamox causes the glands that we have right under the endometrial lining to swell and they present like "cysts". She sees it all the time and it's not harmful. It can apparently be difficult to know how to measure the lining when there is swelling and these "cysts", so a lot of times it may seem like your uterine lining is building up, but it might be due to the way the radiologist measures it. So that's just something to be aware of.
As an aside, amazingly, my fibroid has remained stable so far.
She is going to periodically check my estrogen levels. I'm just about 48 and very much pre-meno. She wants to make sure that we know when (if) I go into menopause, that we know and then can switch to AI's (I guess).
There was more, but that's the simplified version. I guess now I need to figure out what to do in the way of monitoring.
Thanks everyone for sharing information and stories. Please keep us all updated!
LX did not get clean margins on DCIS. MX showed DCIS scattered throughout and also LCIS.
5/26/2017, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2-
5/26/2017, DCIS, Left, 3cm, Stage 0, Grade 2, ER+/PR+
7/11/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
Lumpectomy: Left; Lymph node removal: Sentinel