Any other ER/PR negative DCIS people???

Kkubsky

Wondering how many of us are out there.... And what are you doing, if anything, to lower recurrence rates since hormonal therapy is off the table?

I was told low fat, plant based diet, and exercise. I have cut out most processed food, refined sugars/carbs, and added a lot of fruits and veggies, especially cruciferous veggies. I have lost 12 lbs so far. Want to try and lower my BMI too. Don't know if I can go as low as some of the charts I have seen though.... I think I would look anorexic....

jjprice7611

I am not "-" for both, but I am PR - and I cannot take any meds like Tamoxifen or AIs for my ER + (which is a 6/8). My doc did say that having a PR - does add one more strike under the aggressive category, along with my grade 3, comedonecrosis, etc., etc. and bumps up my chances of recurrence a bit (doc said she puts my percentage at 30% chance).... She did stress healthy diet, try to stay active, no smoking (I didn't/don't anyway) and watch alcohol intake (I rarely have a glass of wine and that is it). I have a mammo every 6 months of the "bad" breast (right) and every year on the "good" breast (left). Because I have a seroma in the affected right breast, I usually have an ultrasound immediately following the mammo. Now there are minor suspicious things in my left breast, so they ultrasound that one too. She also does blood work every few months. I think the only other thing was my docs were very adamant that I had radiation therapy, they said due to the "aggressive" considered qualities, I really should not refuse it. I hadn't ever planned on refusing it, but they definitely made sure that I would not want to. I ended up with 35 treatments.

Lolo62

Yes! I am ER-/PR- I am exercising and following the Mediterranean Diet. I have a torn Meniscus so I can only do recumbent bike weights and floor exercises. Would you mind sharing your story with me? I have not chosen treatment year but I’m leaning towards Lumpectomy with radiation

Ingerp

Lolo--this thread is two years old. You might want to start a new one.

Kkubsky

I know there are other ER/PR negatives out there... Anyhow, it's been 2 1/1 yrs since dx and so far so good. Had lumpectomy and radiation. Sometimes it is hard to believe I had DCIS as everything has settled down for the most part. I have a small "dimple" where I had the surgery and sometimes my muscles feel a bit tight. I did have assorted weird pain and sensations for a while but not so much any more. I cleaned up my diet and lost 30 lbs but have gained about 8 lbs back...which I am trying to lose again. So far I am happy with my decisions. Time will tell....