Taking my chances

I completely understand where you are coming from. I have been reading your posts and I know how angry you are that you were not allowed to have the BMX. I'm nothing more than a distant observer on a website, and I'm furious about your situation, so I can only imagine how you feel.

But... is putting your health and your life at risk the answer? What about instead of going for a mammogram next summer, you go for a BMX? That's what you had been thinking, isn't it? A simple BMX, no lymph nodes, no reconstruction. You tell your doctor to do it, or you find someone who will. Does your hospital have a genetic counseling department? With your personal history of breast cancer and family history of breast cancer, even though you have not tested positive for a genetic mutation, would they not agree with you and support you with your surgeon? Or a do they have a mental health counselor who you can talk to? Explaining your situation as you have here on BCO should easily convince a mental health professional that you are making a logical and rational decision, and the surgeon should be obligated to abide by your wishes. All that should have happened at the time of your diagnosis, of course, but you can still make it happen now.

Having the BMX won't completely eliminate your risk, but it will drop it down to a very small percent. After that, no screening required. You end up in the same place that you want to get to, without putting your health at risk. The only difference is the time taken for the surgery and the recuperation, which hopefully will be no more than a couple of months where you have a few movement restrictions.

You need to move forward and feel comfortable with your health. Your proposal moves you forward, but over time I don't know that you would feel comfortable. A BMX seems to me to be an approach that better addresses your very legitimate concerns.

Mavericksmom, like Beesie, I've been following your complaints that your treating hospital refused your request for a BMX and have been livid over it for you. I feel certain you can find a surgeon who will do it for you, with your history! I had a BMX/no reconstruction in January and could have cared for myself, and for the most part, did. Our sweet daughter took off two weeks of work to come help us, but honestly, that was more intentional on her part to take care of my husband 😉! No surgery is a walk in the park, but compared to a DIEP, a BMX/no reconstruction is a breeze. I was so well healed in two weeks that they started radiation in less than three weeks after surgery! I had a nerve block, so I took very little pain medication, which meant that I really didn't need others to help me with basic functions. I'd had a friend who'd had a BMX some years before who made the mistake of not lifting her arms up for weeks, so as a result she had to go to PT to get her range of motion back. I was lifting my arms above my head the night of surgery. And to prove that a BMX/no reconstruction is less of a surgery, they intended to send me HOME that night but I had some weird bruising on the non-cancer side (they thought related to a port malfunction) so they ended up keeping me. I wish I had gone home--I surely would have slept better. They took x-rays of the port at 2 am, and sent a specialist to access it!

I truly don't blame you for being incensed that you were not allowed the option of a BMX. Do keep us posted!

The Other Beesy

I had a Phyllodes Tumor in 1997 and lost half a breast then--the right side--at 35 years old. In 2018 I had IDC in the left. So after 21 years of having 1 ½ boobs (had to wear a prosthetic to balance/keep my bra from crawling up), by the time the second incident happened, it was a "three strikes you're out" kind of situation for me. I wanted them both off. I felt pretty strongly about having both off, because the idea of having one seemed to be more deforming to me than having zero. It may not make sense to others, but I felt that way and believe I made the right decision for me. I'm sure it's why I reacted so strongly when I kept reading that you'd been denied a BMX by your treating hospital. I would have thrown a fit and then some.

Funny story: In August 2018 when the IDC seemed to pop up out of nowhere and was growing like it had gasoline fueling it, I saw the same surgeon who did my surgery in 1997 (this was before I had the MRI and it was clear I would end up doing chemo first regardless). I told him I wanted both off. His first reaction was to tell me that he hated to take off a healthy breast because it's so "rare" that something happens in the other breast. By this point, we are like friends, and I looked at him like, "Wait, what did you just say?" He self-corrected very quickly and never made another comment--both came off.

Mavericks, I'm glad you spoke up this morning, that Beesie responded and made you look at your options differently. I can completely understand why you'd come to feel like you'd be willing to "take your chances," but really, it seems like you'd be doing what you wanted (and should have been allowed to do) in the first place.

Beesy

I have Medicare Advantage also and they did pay for the PMX.

Mavericksmom:

Had my cancer not been missed the first time, I likely would have had a lumpectomy. Actually, it was less than a cm then and I think that a biopsy alone would have taken it out. But it was missed and my breasts were "extremely dense" and my grandmother had breast cancer in each breast and we got it at the same age in our 30s. By the time I discovered I had cancer, it was big enough that a lumpectomy would have essentially been a unilateral mastectomy and I would have needed work on both breasts to look even remotely normal due to my natural breast shape. If they want to withhold BMXs when they feel they are uneccessary, fine, but they should really do so on a case by case basis with more metrics than BRCA because there are other genes aside from BRCA and they need to factor in mental health.

I honestly would have never been able to trust a negative mammogram interpretation again and would have existed in a constant state of anxiety over it, worrying there was cancer growing in my remaining breast that was missed, and spreading. Now that they are both gone, if it comes back it will likely be elsewhere, which is terrifying but at least I know I've done everything I could possibly do.

I had a lumpectomy to remove ILC which wasn't seen on mammogram so don't trust them like I used to. However, then I remember I can still get IDC -- especially since they found LCIS in my lumpectomy breast. None of this is fun.

Mavericksmom, I can so identify with you. My DH is 62 and in frail health. My 2016 BMX was difficult. I had lots of healing issues, not a lot of pain, but I had drains and I wasn't allowed to lift anything for several weeks. DH was unable to even look at my wounds (and they were terrible), so I did all my own drain and wound care. He was able to drive me to the doctor and help me with laundry and stuff. He couldn't fix meals, unless they were leftovers, but he did the best he could and it was enough.

I had DIEP reconstruction phase 1 last summer (2018) , with complications, and DH was able to help a lot. Fast forward three months to recon phase 2 in Dec 2018 (which is major surgery, wth drains and everything), and DH could no longer take care of me. Except i didn't know it until AFTER surgery. He just decompensated completely in New Orleans. In fact, at 4 days post-op, I ended up having to care for HIM. He couldn't manage to keep up with his own bags or phone, he couldn't call a cab, couldn't manage the airport, couldn't remember his meds, couldn't drive. I ended up driving from Atlanta airport to a local hotel, carrying the luggage and everything WITHOUT pain meds, because I had to be alert since he couldn't be. It blindsided me! I was really angry at first, because i thought he was just being a butt. It took me about 2 weeks to realize fully that DH was in some kind of a brain crisis. Worst 2 weeks of my life.

So, I guess I'm saying, it's not impossible to recover from BMX on your own, but its not easy. I had relatively little pain from my BMX, but there were activity restrictions. I wouldn't have been able to do any lifting or transfering for my DH. I was fortunate to have friends who brought meals for us, so I didn't have to shop or cook. At this point, DH can no longer drive, cook, pay bills, file taxes, or do housework. If I had to have surgery now, I would have to have my DD move in with us for a couple weeks or hire a CNA/housekeeper.

Way to go, Mavericksmom! If there's anything I've learned on this BC journey its you have to advocate for yourself. Your road is like no one else's road. I'm glad your doctors were open to watchful waiting. Hope you have a great weekend!