New here

April0315

so back in Feb it was determined that I had ADH in the L breast, not a big deal, but warranted an MRI and additional biopsies. I have 3 areas on ADH on the L side, all about 5 cm apart, and then came the bad news.. IDC in the R breast with papillary Carcinoma as well.

So I’m in that horrible place of deciding what to do. 2 surgeons recommended bilateral mastectomy. The area on the L is such a large amount of tissue to remove, the R breast (with the IDC) has 4 other lesions that look to be more of the same. So it would be more biopsies and extensive follow ups. Leaning towards the bilateral mastectomy. But some days that changes. I did do genetic testing but results are t back yet.

Anyway..just wanted to introduce myself.

rachelcarter35

I'm sorry you are here. This forum was an incredible lifeline this last year. My DX was almost exactly a year ago. Cry, stay busy, breath. We are here for you.

edwards750

April - we feel your pain physically and emotionally. None of asked for this but it is what it is. It’s not the death sentence anymore and treatments and meds have come a long way since I was DX in 2011.

I would do the bilateral MX if it were me. I had a lumpectomy but my BC was different from yours. It was only in one breast, very small and IDC, Stage 1b, Grade 1. I had 33 radiation treatments and took Tamoxifen for 5 years.

This website is so helpful because who knows better than us what you are going through.

So try not to worry, take a deep breath and keep the faith.

You can do this. We are proof of that.

Diane

April0315

I’m leaning towards the double mastectomy. I meet with my surgeon again the 12th. I had 3 stereotactic biopsies and 2 us guided. I developed hematomas both times. So painful and the breast MRI was awful (and I am in health care, not claustrophobic and very chill by nature). She said they’d want to do the MRIs every 6 months if I opted for lumpectomies,

I know the success rate is wonderful these days, I’m HR (both) + and her2 neg grade 2. From what I understand those are favorable factors. So much to learn.

Thanks for taking the time to reply. I truly appreciate it.

moth

Hi April, sorry you've joined us but this is a great place for support, info and venting.

blah333

I say go for it...... the conditions in your body that make your breasts "fertile" for irregular cellular activity will still be present. This is such an ordeal to go through in the first place, if it happens again in the other breast, it just seems so terrible how some women are finally getting their life back on track and they have to do it all over again. I also wanted the symmetry. It just seemed easier. There are articles online that sound alarm because so many women are doing "overkill" and removing breasts vs. lumpectomy or only one breast but it makes a lot of sense to remove them both in many instances.

santabarbarian

There are some ways to make your system less "friendly" to cancer... Those are worth investigating, even if you decide on the double Mx. The book "Life Over Cancer" (by Dr Keith Block, who is an integrative MO) has a lot of info. Dietary and exercise practices, supplements, etc. In a nutshell cancer has many metabolic/inflammatory connections that cleaning up diet & proper exercise can improve.

hope1603

My mother has been diagnosed with tumor in both the breast. I read couple of article on synchronous bilateral breast cancer and it says the prognosis and the survival rate is worse than in case of unilateral breast cancer. I am looking for some hope stories on synchronous bilateral breast cancer.

Moderators

Hi there, April0315-

We're so sorry you find yourself here, but we're glad you've joined our community. We hope it can be a source of support for you as you begin down this road. Please keep us posted on what you decide in regards to your surgery!

The Mods

blah333

i was vegan for 7 years, exercised, ate good foods/vegetables etc.. and cancer still happened so I have less faith in making your body "less friendly" to cancer... I'm at a loss what I could do. Certain things I thought might have caused cancer (like staying up really late/melatonin) I blamed but then realize my mom does the opposite and also got it, so it all just seems like a freeforall with limited ability to do anything. All the things they tell you to do (don't smoke don't be overweight etc) I did everythng on the list and it still got me

Gardentool

Sorry, but I don't see anything but "Reply" here. I just joined. I have stage 4 metastatic breast cancer. I'm taking a targeted therapy drug (Lynparza). The cancer spread to my lungs. I have 18 tumors in my lungs, the largest being 10mm. Mostly, I am angry. When I was originally diagnosed, I was jerked around by so many doctors trying to push things on me that I didn't want to do. They jerked me around for so long, they ended up killing me. My cancer might not have spread if they had done something before my tumor got so large I looked like I had three breasts!

But here I am, did chemo for 8 months, double mastectomy and 5 weeks of radiation, for what? Two years later, I am dying. And I am pissed off!

Salamandra

Hey Gardentool,

You've earned your anger. We are all entitled to doctors who give us information but respect our own decision-making processes. I'm so sorry you're dealing with this.

There is a 'forum' here especially for people with Stage IV (early stagers not permitted to post in most threads), I bet you could find some good commiseration and support there. Not to chase you away from here! Just in case it might be more meaningful for you to be in conversation with other people who can really empathize.

Moderators

Dear Gardentool, we're sorry that you had to join us here, but wanted to say welcome!

As Salamandra says, of course you can post everywhere in the discussion boards, but in the Stage IV forum you can connect with others who have experience with later-stage diagnosis and treatment, which can be very helpful too. See here, there are many active threads you can join too: Stage IV/Metastatic Breast Cancer ONLY

Hope this helps. We are thinking of you and sending positive thoughts!

The Mods

Gardentool

Salamandra, thank you

edwards750

OMG I’m so sorry Gardentool. You don’t deserve what you have had to endure and what you are dealing with now. It is beyond reprehensible. When we are DX the vast majority of us are in shock and have no real clue about treatments and surgeries. I know I didn’t. They throw stats and percentages at you and expect you to understand and retain what they say. Seriously? If it hadn’t been for a friend who went through it and a nurse advocate I would have been lost. This website was a godsend too.

Apparently you had a less than stellar medical team. Unfortunately we are at their mercy. I had a good breast surgeon with a lousy bedside manner and a great staff and an oncologist with an ego problem but was on staff at a great cancer clinic.

I have a friend who is Stage IV. She is hanging on but hers was a cancer that came back after 2 years. It’s depressing because it doesn’t seem that they are making progress infinding a cure for this insidious disease despite their spouting off about the numbers of lives saved.

I know it’s hard and unreasonable probably to say keep the faith but am praying for you.

Diane

Ladyofthelake

April0315

When I was diagnosed with IDC in the right breast, every test showed my left side as normal. Nothing showed up in the mammograms, the ultrasound or the MRI. I made my decision to have the bilateral mastectomy based on my mum's history of breast cancer and the recurrence she had years later. I struggled with the decision, wondering if it was too drastic for one tumor on one side. Being a good candidate for a nipple sparing double mastectomy straight to implants helped me in the end decide to go ahead with it. Having both look the same size was important to me too. Once the final pathology report came out after the surgery was done, I was surprised to see I had ADH with proliferative fibrocystic changes and fibroadenomas on the left side. The same left side that every previous test had found nothing. I already felt comfortable with my decision, but this just reinforced it. Yes, it was a major surgery to go through, and the first few weeks were hard, but 7 weeks later I'm feeling good and everything is getting back to normal. It may seem drastic now, but it could reduce the number of procedures you have to go through in the future. All the best with your decision.

Gardentool

I am so sorry you've endured such horrible care. I hope the stage IV forum will help you. There are many other areas here worth looking at too. Sending positive thoughts out to you.

April0315

thank you all for such a warm welcome and the support.

Finally meet with the surgeon tomorrow morning and hopefully get some sort of plan in place. My family and friends keeps asking me lots of ?’s that I have no answers for.

I did get my genetics testing back and that’s all negative (which was a relief as I have 2 daughters).

I’ll check in tomorrow after the appointment.

Thanks again!