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Mastectomy for fibroadenoma?

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lahri
lahri Member Posts: 1
edited April 2018 in Benign Breast Conditions

Let me start with some back story.

Breast cancer does run in my family, to an extent. It hasn't, thankfully, affected much of my family recently. On my dad's side, my grandmother had breast cancer. My great aunt had breast cancer. There are some other family members that are second-degree relatives that also had breast cancer. Additionally, my aunts both get very small masses from time to time that disappear on their own. They also have quite large breasts, but they continuously get them checked. They've never had breast cancer. As for my mother's side, my great grandmother had breast cancer, my great aunt had ovarian cancer, and some other third-degree relatives had breast cancer.

In August 2009, I felt a lump in my breast one morning. I was 14. Later that month, I went in for a consultation, shortly thereafter an ultrasound, and a biopsy in December of that year. I was told that I had a fibroadenoma; it was located in the upper area of my right breast. I am also an A cup, so I really don't have much there. Over time, the fibroadenoma grew. A lot. It started out about 2 cm x 2 cm or so, which isn't that big. As it grew, I eventually could not do any sports or activities that required much movement on my arm. I would pull the fibroadenoma every time I moved much, which began hurting immensely. By the time I had my lumpectomy in August 2011, exactly two years after discovering the lump, the fibroadenoma grew to 7.5 cm x 7.5. When I would lie down, you could very easily see it bulging out of my skin. When my surgeon came in to mark the area in pen for removal, she tried lightheartedly joking about how she didn't even need to feel to find it.

Flash forward a bit. In December of 2015, I found another lump. It was on the underside of the same breast. On average, I would say it's kept about the 2.5 cm x 2.5 cm size overall. I checked in with my primary care physician and set up an ultrasound for April. Like last time, I had also had an ultrasound-guided core biopsy in early May. (They have ultimately avoided mammograms because the ultrasounds shows everything clearly. I also had a localizing clip placed this past time, so they can easily find it.) This time, I was told that I had a surprising--not in a good way--number of blood vessels going to the mass. I learned shortly after that it was another fibroadenoma. Despite the surgical glue (I have no idea what the appropriate term is) being nicely placed over the incision mark, as well as proper maintenance of the incision afterward, I bled quite heavily from this biopsy: both internally and externally. I had dark red blotches across the lower side of my breast for about a month and a half before it completely went away.

Both of my Bi-rads assessments have been a 4. I'm not sure what my previous fibroadenoma was, but my surgeon mentioned several times that it seemed suspicious, both before and after my lumpectomy.

I'm going in for my six month "check up" ultrasound tomorrow. I'm going to talk to one of the nurses there in depth, if I can, but I've already made up my mind after months of thinking: I want to have a mastectomy on my right breast. Over the course of the last 11 months, the fibroadenoma has moved and changed shape and grown a lot. It certainly fluctuates with my hormones, but it changes all the time regardless. It hurts almost more often than not now. As I said before, I have very small breasts. Having a 7.5 cm x 7.5 cm mass already removed from it, my right breast is even smaller. If I leave the fibroadenoma in, I run the risk of having the same thing happen as last time. If I have another lumpectomy, I'm not going to have much breast left anyway, and what is left will look really awkward. My doctor also noted that breast masses may just be something I have to deal with again in the future.

Ever since I was 14, I would heard from doctors about how I was so young to have this happen and to go through this. My nurse this past time said that as well, without knowing my history, which started 7 years ago. After my biopsy, the nurse asked if I had a plan for what to do after learning about my past lumpectomy. I felt judged when I told her that I was thinking about having a mastectomy, like it was too extreme. For the most part, if I wanted to breastfeed with my right breast, it would be very difficult due to the ducts that were interrupted with my past lumpectomy. I'm also already missing a lot of feeling in that area.

So, long story short: I am looking for support that mastectomy isn't such a foreign idea for "just" a fibroadenoma.

I'm also wondering if anyone has any guidance they can provide in terms of insurance and receiving the approval stamp of a "medically necessary" procedure. My insurance has said they will cover it under professional services if it is deemed medically necessary, but they have not given many guidelines for that aside from testing positive for the gene testing or personally having breast cancer. I am willing to fork out the money to get this done, but my $3,000 out of pocket maximum after my deductible is far more optimal than having to pay purely out of pocket. I would feel less comfortable forking out $3,000 for a lumpectomy.

This is a lengthy post, and I apologize for that. I just recently came across this community, and I am looking for support that is difficult to find around me in person. Thank you.

Comments

  • moderators
    moderators Posts: 7,907
    edited October 2016
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    Hi Lahri-

    Prophylactic mastectomies are fairly common for women at higher risk of developing breast cancer in their lifetime, usually women who've had a positive genetic result or a strong family history of breast cancer. They're not unheard of for women who have ongoing benign breast issues, but as you mentioned, getting the surgery approved and covered by insurance becomes an issue without medical necessity. It's a very personal decision, and one you obviously haven't come to lightly. The most important consideration is that you're doing what is best for you and your situation, although it's important to remember that a mastectomy doesn't fully eliminate your risk (women who have recurring fibroadenomas often have them in both breasts). We have some info on our main site about prophylactic mastectomies, and how to decide if it's the right course of action: http://www.breastcancer.org/treatment/surgery/prop....

    We hope this helps!

    The Mods

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited October 2016
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    Fibroadenomas tend to develop in teenage girls and young women in their early 20s. So I don't understand the comments you've received that have said that you are too young for this to be happening. Maybe they mean that from a general standpoint, you are too young to have to deal with a medical problem and surgery. But a fibroadenoma? You are exactly the right age for that. I had my first fibroadenoma at 16. It was huge and had to be removed surgically, both because of it's large size (in my very small breast) and because that was a long time ago - before ultrasounds and mammograms were available. So surgical removal was the only way to find out if the mass was benign. When I had that fibroadenoma removed, my surgeon warned me that another might develop. It did, 4 years later, when I was 20. With my surgeon's approval, I left that one in place for 4 years but finally decided to have it removed too, because it was just so large.

    For the next 18 years or so, I had no problems at all. After that, once I entered peri-menopause, like a lot of women with fibrocystic breasts (which is 60% of all women), I started to develop cysts. I developed quite a few very large cysts, in both breasts. Before sending me for screening, my surgeon would first try a fine needle aspiration (a needle and syringe; simple, quick, painless) to see if he could retrieve fluid from the cyst and collapse the cyst. It worked every time, so all my cysts were handled in a quick 5 minute appointment with the surgeon. (By the way, it sounds as though your aunts probably had cysts; because cysts are fluid filled, they can disappear on their own. They are very common and perfectly normal, and are not a risk factor for breast cancer.)

    At 49, I developed breast cancer. It was my other breast - the one that didn't have the fibroadenomas. Although my breast cancer was caught while it was still very early stage, I did have a breast full of DCIS, which is a pre-invasive condition, so I had to have a mastectomy. Because an MRI showed that my other breast (the one that had the fibroadenomas) was clear, I opted to have a single mastectomy. 11 years later, my breast that had the fibroadenomas is still fine; I've had a few more harmless small cysts (that have just been left in place because they are small and painless), but nothing more.

    So, from my experience I would say:

    First, it's not necessarily true that you will continue to develop fibroadenomas. From the info you've provided, I'm guessing that you are about 21 now, which means that you are moving to the outside edge of the age where fibroadenomas tend to develop. Some women who are prone to fibroadenomas do continue to develop them, but most don't.

    Second, don't underestimate the seriousness and long term impact of having a mastectomy. I had a relatively easy time with the surgery and recovery, but it still hasn't been easy. And I still feel and notice the effects 11 years later. It's major surgery that will change your body for the rest of your life. If you have reconstruction, it is often a lengthy and multi-surgery process. If you have implant reconstruction, your breast will not be like a natural breast, and you will have to replace the implant several times over your life. With a MX, you will lose all natural sensation in your breast except possibly for some surface skin sensation. A recent study put the complication rate after a MX + reconstruction at over 50%. Most of these complications can be treated and/or corrected, but some can't.

    Having been through it myself, I appreciate the difficulty of your situation. It does sound like another surgical biopsy to remove and analyze this second fibroadenoma is probably in order. If it were me, I would have that surgery, and then decide from there, based on how the healing goes and whether another fibroadenoma developed. At this point you are thinking about having a MX in part because you are dealing with this very difficult fibroadenoma. Logically therefore, you are probably seeing all the benefits you'll get from the surgery but you may not be considering all risks and possible complications and long-term issues. My suggestion is that you take care of the problem with the fibroadenoma first so that you can consider the MX on it's own merits and with no pressure to act quickly (to rid yourself of any existing problem).

  • CL91
    CL91 Member Posts: 4
    edited October 2016
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    This is what I'm thinking about doing too. I'm 24 and over the past 6 years I have had 6 fibroadenomas. The anxiety and worry are making me miserable, they're making everyone around me miserable, and if I hadn't read that double mastectomies cause infertility, I would already be making appointments with surgeons.

    I totally understand the thought process and the reasons to look into it. Fibroadenomas, for women who have many of them, are never "just" fibroadenomas. Each one you get increases your lifetime risk of developing breast cancer. I'm at 6 now, and that means I have a roughly 20% lifetime risk of breast cancer, which is much higher than the national average of only about 12%. I don't want to get even more of them. It feels like I'm setting myself up for the disease.

  • applewhite
    applewhite Member Posts: 1
    edited April 2018
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    I understand this very well. I am a 20 going on 21 year old that has dealt with FibroAdenomas since I was 17. I found them in a check in a shower. I went and got an ultrasound done to find I had seven in my right breast. The radiologist didn't check my left breast because he said he didn't believe it was necessary. Said they were adenomas that I didn't need to worry about. I didn't have much problems until I started to feel my breasts get tight and painful. I don't know if this is related, but I have stabbing pains in my breasts that take my breath away and leave me in pain for a few minutes. Anyways, touching my breasts pained me and so I went and got them checked again. This time, I got a proper ultrasound done on both breasts and found out that the fibroadenomas had grown tremendously. I had one at a 7 and another one at a 5. Got told I was too young to deal with this, they were surprised.So, the radiologist (this was done at a different clinic by a different dude, we will call him Dr. B)diagnosed it as Phyllodes Tumors. Because of their shape and massive growth,that was all he could think of. He recommended I get an exicional biopsy done by a surgeon to confirm. I see a surgeon, Dr. C, who was also surprised by the amount of lumps in my chest. He does the surgery a month later. I recovered okay, except for the fact that I have major scars that are long and pink and thick. The results only informed me that I didn't have cancer, but not that I didn't have Phyllodes so I kept this i on me for a while. Anyways, after the surgery, I felt great. No pains, once I recovered I went back to regular life. Then 3 months later, I got the pains again. Felt my breasts and felt a huge lump again.I had a post-op ultrasound coming so I wasn't that worried. I go to the ultrasound and Dr.B's assistant kept asking me if I was sure that Dr.C took out the huge lumps. I told her I was certain and she continued on imaging my lumps. This is kinda cute and kinda not, but one of my lumps is shaped like a heart. Anywho, she does the imaging and then calls Dr. B in to read them. He looks very serious and tells me that the 4 places that Dr. C removed a lump, another one grew in it's place, one of the lumps already having grown to a 5. No one has told me I don't have Phyllodes yet so I've already decided to do a double mastectomy with breast reconstruction, already looked at my insurance policies, had my ducks in a row. Go to see my surgeon, and he tells me I have nothing to worry about,that they are not Phyllodes. He tells me that doing a Mastectomy would make him lose his licence and that I have not a lot to worry about. He tells me that once they get too big, that we will do a lumpectomy and he will try to go through the same scars I already have. Before my first surgery, he told me that I wouldn't even have visible scars, but I have a scar that runs from the top of my side boob to the bottom. It's frustrating. He sent me for a needle biopsy after the appointment with Dr. B, who is also very frustrated. He has many patients that he cares for,but as he has told me, I'm a special case he won't forget. So, now, I have to spend the rest of my life getting surgeries (taking 2 cm of breast tissue with every lump),every 6 months getting an ultrasound, without a cure in sight. Dr. C wants to send me to M. D. Anderson to see if they can help me but my hormones are so out of whack already. I have Polycystic Ovary Syndrome so my hormones will never be normal, but I just want a permanent solution.It's so frustrating, you know. Can't even imagine how the fibroadenomas will act up if I ever get prgenant.