DCIS grade 3 post mastectomy, no further treatment: what's next?

Just want to say that I have read that with hormone negative cancer, after 5 years, you are pretty safe. For those of us with hormonal cancers risk continues to rise. Is your oncologist going to continue to see you for 5 years?

I am 9 years out and my oncologist stopped seeing me at 5 years. Worry is on the back burner but always there, but it does get better!

Hello gillbelle84,
I was diagnosed in 12/2022 with ILC in my Left breast that was hormone negative like your tumor, and IDC in my Right breast that was hormone positive. Both were stage 1a. I had a bilateral mastectomy at Mayo Rochester and the tumor board there decided no chemo for me. I am on tamoxifen for the hormone positive tumor that I had but I felt like you about the hormone negative tumor, it is scary not to do anything. Well when I had my first appointment at the Mayo's Breast Cancer Survivorship area I was told that the best things I can do to guard against recurrence was to exercise ( I do a brisk walk for 35 minutes everyday, sometimes in the house even) and also it's very important to eat 7-9 fruits and vegetables a day and limit the sugar in your diet. Also limit alcohol or cut it out altogether. I'm doing all of those, and while I always ate 5 fruits and vegs per day the jump to 7-9 took some getting used to! The cruciferous vegetables, broccoli, cabbage, cauliflower etc. are very beneficial to avoid recurrence, so I be sure to include one of those everyday. Also I read online about doing a 13 hour intermittent fasting each day to help avoid recurrence. 13 is the number that they say to do to avoid recurrence , not 12, not 14 but 13 hours. I asked about that at Mayo and they said there is no proof of it, but they think it's a good idea to do it. It is good for you in many ways as long as you are not diabetic. 13 hour fasting is easy to do, say you finish eating dinner at 7pm, then don't eat breakfast till 8 am the next morning, so there are your 13 hours. You can have black coffee or black tea (as well as water of course) on an intermittent fast. So the coffee helps if you need something before breakfast. So I figured why not do the 13 hour fast. So I am. Those are the things we can do to help ourselves avoid recurrence and at least I feel I am doing something to help! Sending Love, Healing, and Wellness wishes to you and to all on this site ❤️

I've been doing intermittent fasting too. I finish eating before 6 pm and then eat again after 10 am.
So far it works for me. I've lost weight and I think it will help the prediabetes too.

Weight loss is huge. According to a study by NIH women who even take tamoxifen etc it won’t help if you are overweight when post menopausal cause then estrogen comes from Aromatase the fat cells. I have not had my surgery yet . I was advised I would possibly not need chemo or radiation but we won’t know till the surgery. So I am currently working on the obesity side of things. Sometimes I get mad and will have a glass of wine etc or small bar or chocolate. I think for me it’s trying to live my live not only healthy but to where I’m not angry or frustrated. Those things add to stress and stress adds to cancer .I do intermittent fasting. I don’t have set time. I just ensure I do not eat for at least 12 hrs. Mostly I am 16 hrs plus. I was never a big eater and definitely am not a breakfast eater so for me it’s quite easy to go from 10 pm to like 2-4 pm the next day. I have a hard time with vegetables so I cheat by taking cruciferous pills. I don’t have any problem with fruit . Sometimes though things just happen. You can do everything , surgeons can do everything but that’s why they say a mastectomy is 98 percent never it’s 100 percent. There could be that one little cell but You must not live life wondering about the what if. The surgeries are done . Just live your life. The stress of what ifs could even bring about something else. There are many survivors thriving .Living life to the full. Do the best with your current circumstances and go live. Have lots of fun while doing it

@gillbell84, it's been an intense number of weeks for you with diagnostic testing, appointments, making decisions about reconstruction, surgery, recovery...oy so busy. You've probably had little time to actually process everything and the big questions of Now What? set in.

Be sure to ask your team about your follow-up schedule. Also, don’t wait until your next scheduled appointment to report any new symptoms and symptoms that don’t go away. For the first few years your follow-up with likely be with your cancer team. Eventually, you will transition to your primary care doctor.

But, what about the emotional aftermath of all this? What about the worry? The fear? I think the discussion @rhongirl started captures a lot of what you're feeling in this related discussion
- Emotional aftermath following breast cancer treatment
https://connect.mayoclinic.org/discussion/emotional-aftermath-following-breast-cancer-treatment/

And this one too:
- Life After Cancer: Do you feel prepared for it?
https://connect.mayoclinic.org/discussion/life-after-cancer/

Most of all, @gillbell84, you're not alone and you have a big support group here for every question, fear, joy and triumph.