Mastectomy for Fibrocystic disease

I saw some one talk about this in 2013 but I wasn't sure how I could add a post there so am putting this one up. It's late I know but maybe when I wake I will get some opinions. I have been having breast pain since I was 20. My mom aunt and grandma all told me it's cuase I wasn't wearing a proper bra. As a year went by my grandma said maybe it's cause I wear sports bras all the time which eventually turned to, I am bench pressing to much weight (at that time was benching almost 200 pounds). Because of the constant tellings of it's bra related my breast hurt I left it alone. Trained my self to ignore that particular pain. The pain never went away it didn't get better after my cycle and it was always constant. My gyne. doctor said I had lumpy breast but just said my pain was just from working out. After years went by excersise changed the pain didn't decrease. Now I have my own insurance and the doctor had me do the mamo, ultrasound. Found I have the FD (fribocystic disease) and cause I have breast cancer in my family was told to basically suck up the pain till menapose and the pain may or may not go away. I have other pain that I know can't be fixed and am looking into doing the mesectomy. I want to do it cause the pain isn't getting better I can't lay on them propper bras and sport bras don't help and diet doesn't make a difference. Is it really to go through with this? Am looking at it as I no longer(possibly) have the pain to deal with, and won't have to worry about getting more mamograms, more ultrasounds, not have to worry about the possibility of getting cancer, going through all the chemo and the possibility of reconstruction or mastectomy at that time. So I'm wondering is this really the right thing to do I'm set on it but my mom is the one that isn't I have somewhat support with my grandma now that she is listening to what I'm going through but I just don't know and I figured I can get some opinions from those who have gone through it or is going through the same thing I am. I just want to be happier and I know I won't miss them. Please would love some guidance for this cituation.

I agree with Outfield, you may be exchanging one kind of pain for another. In addition to the possibility of that, not all surgeries go as planned. There are women on these boards who've had issues with healing, the required time of doing almost nothing (no lifting over 10-20 pounds for an extended period of time) causing problems, the risk for lymphedema (major surgery to the chest raises that as a possibility), reconstruction going wrong etc. If you did get lymphedema, for example, that is also a permanent thing that would have to be managed. You are not talking about a "simple surgery" without risks of it's own. I would speak very plainly to an expert (breast surgeon) about what your expectations are and make sure that you are very well aware of the risks associated.

I am not sure if that would even be a covered procedure unless there is a condition like cancer, strong family history of cancer or being BRCA+ etc. I had fibrocystic breasts and had seen a breast surgeon about it when I was younger too and she followed up with me for a number of years. I would go that route. The surgeon can discuss with you your problem, your family history, look over you films/reports and what you are considering as an option and give you the information on it so you can make an informed decision. Maybe even steps that you would have to follow to get to the point of a mastectomy being an option.

It is major surgery, and I echo what the others said above. You sound very much into being fit which is great, and you want to make sure that you know exactly what the risks may be if you have surgery and the potential to get back to that level of fitness with weights etc.

I would be VERY surprised if an insurance company agreed to pay for breast amputation with no disease process or strong family history. I'm sympathetic to your pain and I can feel your frustration, but I don't think you understand enough about mastectomy.  For one thing, mastectomy does NOT guarantee you a cancer-free life, nor does it necessarily cure pain. If you did find an insurance company who would agree to pay for it, you need to know that reconstructed breasts almost never look like real breasts and most women lose all or most sensation in their breasts and nipples.  I know of several women who had reconstruction with implants who live with chronic pain from that surgery.  As for myself, my BMX resulted in terrible scarring and took 5 months to fully heal. And I didn't even have reconstruction!

You really do have my sympathy. Chronic pain can drain the enjoyment out of your life. I wish I could wave a wand and make things better for you.

Insurance usually won't cover it for that, at least, two different companies denied me for it.

In the appeals, they literally said, "Just take more Advil" for the pain despite being told by multiple doctors on my end and two surgeons that even narcotics didn't touch the pain, I didn't want to be on painkillers the rest of my life, and they all recommended the BMX as medically necessary due to chronic pain.

They denied it also despite evidence showing the studies they cited to deny it were taken fully out of context and those same studies actually recommended a mastectomy for women whose pain was not cyclic and did not respond to painkillers or hormonal treatments (which mine didn't).

Insurance were more than happy to do it when they found out I was at high risk for breast cancer though.

Not surprisingly, all of my "chronic" breast pain disappeared 100% once the breasts were gone.

Honestly, the pain was so bad and so constant (mine was NOT cyclical, it was there all the time) for me that I was already saving up and considering a bank loan after the first insurance denial just to pay out of pocket to travel to a surgeon who works mostly with FTM people to just remove them and leave me flat if the 'regular' medical community was going to just tell me to live with it. With those surgeons, a BMX + reconstruction to make you flat runs $7,000 to $15,000 usually. Some do require letters from a psychologist or other mental health professional stating that you're mentally stable/sound and fully understand and want what you're asking for, however--basically, just a higher level of informed consent.

That's just something to keep in mind if you're not high risk for breast cancer, but are in constant pain due to the fibrocystic breast disease.

Just a tip for that: Find out BEFORE your BRCA test if your insurance requires a positive genetic result to cover a mastectomy.

Mine didn't, and they were happy to take 'strong family history' as enough proof that it was in their best interests in terms of potential long term costs to cover the prophylactic BMX vs. the higher risk that they'd potentially have to pay out for cancer treatments (which are more expensive) down the line.

So, I went ahead and got the surgery approved and done with then had my genetic testing done; I'm not BRCA positive, but was NF1 positive which is also another one that's usually given the green light for a prophylactic BMX as there's a heightened breast cancer risk--just not as bad as BRCA-1--with that one too.

If yours doesn't, I'd say try to get it approved based on family history and get around to the genetic testing sometime after the surgery, as insurance will typically still cover it when there's a family history involved, even if you've already had the surgery done as there is a possibility for BRCA-2 which would mean you'd probably want a total hysterectomy as well to cut the risk of developing ovarian or uterine cancers.

Good luck!

I know I haven't ever regretted getting mine done; it took a chronic pain of 7-9 on the scale down to a 0. Even the pain of drains and healing was significantly less than the pain from those awful fibrocystic breasts I'd had prior.

The first time I remember asking my parents about it was when I was 15, and I was told it was just 'growing pains' and would go away and I waited for it to go away for many years after that and it just got worse and worse. In retrospect, I wish I'd just had the mastectomy done at 18; I'd have been happy to pay out of pocket, but, well, I just sat around waiting to 'grow out of it'.

I am 40 years old and have suffered from severe fibrocystic disease for more than 15 years. Over the past 10 years I have had 3 surgeries to remove problematic cysts. I went to the doctor the other day because of a new cyst and severe pain again. However, the doctor said that over the past 2 years my fibrosis has gotten so bad that she is not able to do the minor cyst removal anymore. I am faced with a decision. I can begin stopping my hormone therapy (had a full hysterectomy in 2010) and go through all the menopausal symptoms and hope the pain and cysts subside, or I can opt for a BMX with reconstruction. Not sure what to do...

Hi. I am 41 and have always had painful dense breasts. About 1.5 years ago, the pain got incredible worse and my breasts enlarged. I had mammogram, biopsy, ultrasound done. One doctor told me.it was fibrocystic breasts, while my naturopath told me it was PMDD, and my results from mammogram said it was adenoma in the lymphs. I have bad hormonal imbalances, including hypothyroidism. I cannot stand the pain in my breasts any longer. My breasts grew from a c cup to a DD cup in 6 months. Doctor's don't seem to be concerned, except one surgeon I saw wanted to do a lumpectomy. I am considering getting a breast reduction and remove all the dense tissue, and cysts . I am not sure as well if this would reduce my pain but it is 10/10 with stabbing pain, heaviness, my whole left side gets painful, I have several fatigue, cannot workout because of the breast pain. I would be curious to know if you had the mastectomy done and how you fared afterwards?