Should I consider getting a mastectomy?

Dearjaimee

Last July, I had surgery to remove a 3.9cm mass that when biopsied, showed to contain radial scar and atypical ductal hyperplasia (ADH) cells.

I had an MRI last month that showed another 1cm mass in the same breast. After having a mammogram and ultrasound done, my surgeon is recommending surgery to remove this mass as well. I'm scheduled for surgery next Friday.

My question is, at what point do I consider getting a mastectomy? I know ADH isn't cancer, but if it's something that is going to keep coming back every year that requires surgery to get removed, when should I consider getting a mastectomy done?

I'm 25 years old, and don't want to have to keep going through this same surgery every year.

Please, any opinions are greatly appreciated!

farmerlucy

I would ask your surgeon about a referral to a genetic counselor for possible genetic testing. You seem pretty young to be going through all this. Also if you ever feel the need I would get a second opinion on anything you're uncomfortable/unsure about. Best wishes to you.

Dearjaimee

Thank you so much for the reply (:

I don't have a family history of breast cancer or any breast conditions. The closest thing would be my maternal great grandmother who had a mastectomy in the early 90's because they saw a 'suspicious mass' but as far as I know, no other testing was done.

I have a really great surgeon, my radiologist referred me to her after I had my very first mammogram last June, she described her as one of the best breast surgeons in the southwest, so I'm comfortable with her..but even having the decades of experience she has, she told me I am her youngest patient she's ever had and is trying to think of a treatment plan since I'm too young for something like Tamoxifen/other treatments she would recommend if I was older.

I have an appointment with my surgeon on Tuesday to go over my most current scans and everything, so I'm the meantime I'm just trying to get my list of questions ready (:

mkkjd60

Hello dearhjaimee. Oh my goodness! You are so young to deal with this! I think farmer is right to go ahead with some genetic counselling even though you have some knowledge of your history. I know a fair amount of people who never consider things like the male line of their family. That being said, I think your situation is rather unusual due to your age. Why not ask the doctor about the possibility of a mastectomy? Ultimately, it is your body...and your mind. Fear of the future, especially at your age, is a real thing. Of course, you can't let it run your life but you should consider its implications. I went to high school with a girl who had a mastectomy at about your age. We are 56 now, living happy, productive lives. Good luck, my dear. Let us know how you do. Mary

Dearjaimee

Update:

I picked up my scans and radiologist reports from my MRI and mammograms to bring to my appointment with my surgeon tomorrow morning. While looking over them, I noticed something kind of shocking that I've never seen before..

At the end of my mammogram report, there is a section that reads, "Tyrer Cuzick calculations report this patient's 10-year risk for developing breast cancer is at 1.1% and lifetime risk at 41.6%."

I feel like this gives me even more reason to consider a mastectomy sooner rather than later.

Has anyone seen something like this on any of their reports???

Castromi

Hello

I've had two masses removed last year right breast. The second mass contained ADH. I considered a mastectomy if my BRCA test was positive. I was fortunate that my results were negative. I'm at a 35% lifetime risk. I'm having a Oophorectomy next week and will begin tamoxifen soon after. I will have reconstruction surgery on my right breast after my next MRI in June.

farmerlucy

Mine was 50%. I had a prophylactic mastectomy. I wonder how they came up with that for you without doing a formal genetic interview? When I found out I had Alh and Adh my BS sent me to a genetic counselor. The family tree exercise was so interesting. I found out that the "safe" side of the family was "cursed" with cancer including male breast cancer in my great great grandmothers generation.

Dearjaimee

Castromi, is the oophorectomy recommended for you based solely on your history with ADH?

This will be my second mass surgically removed in 9 months. I decided to skip the core needle biopsy this timeand go right to surgery given my first surgery found radial scar and ADH (I figured why waste the time and money when I know I just want it out.)

Because I'm only 25, my surgeon won't even consider putting me on Tamoxifen. She told me after my first surgery that it's never been tested in anyone younger than 35 and no doctor/surgeon/oncologist will go near me with it. So that option is out of the picture /:

ElaineTherese

Eh, you're very young to be considering a mastectomy. I agree with farmerlucy that you need to ask about the rationale for the 41.6% lifetime risk. Just remember: once your breasts are gone, they are gone. Reconstructed breasts can be aesthetically appealing, but they lack the sensation of the real thing.

At age 46, I was diagnosed with a very aggressive form of cancer (triple positive, grade 3), and I opted for a lumpectomy. I figure, if I have a local recurrence, I can always get a mastectomy. In the meantime, I'm happy that I didn't have to undergo reconstruction (which often requires multiple surgeries and can have complications), and that my breasts are still there, in all their middle-aged glory.

I would only opt for mastectomy if my cancer were invasive and/or was so extensive that a lumpectomy wouldn't do.

Dearjaimee

Farmerlucy, I'm not sure how that calculation was made for me. I looked back at the radiology/pathology reports from my first surgery and didn't see anything about what my lifetime risk of developing breast cancer is.

My surgeon told me that having ADH makes me 4-5 times more like to develop breast cancer later in life than the average woman walking down the street, which would put me between 20-25%. So it came as a huge shock to see 41.6% on my most recent reports-it seems like a significant difference that definitely impacts my decision on whether to have a prophylactic mastectomy done.

Castromi

Hello,

I had an appointment with my Onconologist this morning. She stated that the Oophorectomy is a preventive measure for the ADH. With the Oophorectomy I will most likely not have to start tamoxifen. My grandmother had ovarian cancer..recently I had ovarian cyst that ruptured.

Dearjaimee

I had my apt with my surgeon yesterday morning. I asked her about genetic testing and if meeting with a genetic counselor could be an option. She said since I have no family history of breast cancer, that it's not an option. There's cancer in my family, (dad passed away of jaw cancer, dads dad passed away of esophageal cancer) just not breast cancer.

I also asked her because of my lifetime risk of developing cancer, my age, and if things keep popping up on scans every 6 months to a year, if considering a prophylactic mastectomy is a dramatic step that I should think of with a grain a salt, or if it's something that I should seriously consider..she definitely validated that it's a reasonable measure to take.

My husband wants me to get a second opinion, not because he doesn't trust my surgeon, but because even though she has decades of experience, she doesn't have much experience at all treating someone my age with stuff she normally sees in women going through or post menopausal. She's told me herself she's not quite sure how to proceed with a treatment plan. What happens if in a year, I find a lump but am pregnant? I can't have the testing done needed because of pregnancy, and what if that's the lump that turns out to be mallignant?

I know it's a lot of 'what ifs' but they're realistic concerns at my age. I'm at the point of thinking, why not nip it in the bud so I won't have to worry about this the rest of my life? Hence, considering a mastectomy.

farmerlucy

I think a second opinion is a very good idea. You could have have a mutation that has not presented in several generations. My daughter is 26. My oncologist agreed to follow her, order her screening and such. I just think that sometimes surgeons and oncologists have a different view of treating cancer. I would strongly urge you to speak to another doctor (or many)before you contemplate something as life changing as a double mastectomy.

Momof6littles

This is from the Society of Surgical Oncology's Position Paper on Prophylactic Mastectomy:

Rarely, bilateral prophylactic mastectomies may be warranted for an exceptional patient without family history or high-risk histology. Such a patient would exhibit the following characteristics: extremely dense fibronodular tissue that is difficult to evaluate with standard breast imaging, several prior breast biopsies for clinical and/or mammographic abnormalities, and strong concern about breast cancer risk.

http://www.surgonc.org/resources/consensus-statements/position-statement-on-prophylactic-mastectomy

Dearjaimee

Momof6littles:

I don't have the family factor, but I am considered high risk. I have extremely dense breast tissue, the mammogram techs always have the hardest time getting decent images because of that.

I'm onto my 2nd surgical biopsy in 9 months due to a suspicious mass that they want removed based on the fact that the last mass I had removed was ADH and radial scar.

And after finding out I have a 42% lifetime risk of developing breast cancer in my life, I definitely have a strong concern about it.

sandilee

Dearjaimee- You mentioned that your have a 42% lifetime risk by the same measure that said you have a 1.1% 10 -year risk. Why not wait a few years and see how it goes. If you get pregnant, breast feeding is something you will probably want to do, and I wouldn't want to take that from you at your age.

If you continue to monitor yourself closely, and I would recommend a breast MRI every two years, not just a mammogram yearly, I believe you will be able to make a decision down the line about the mastectomy. Remember that it has been shown that lumpectomy is as effective as mastectomy in removing tumors, if that were to occur.

I understand that the breast removal now would be to prevent the cancer ever recurring. I just think you should take more time to make this decision. Maybe after you have your children? Just my thoughts. Good luck to you! This is the advice I'd give my daughter, even though she has a mom with cancer.

ChiSandy

Whoa--let’s revisit that 41.6% lifetime risk. “Lifetime” these days is usually considered to be by the age of 80 or even 90. Your 10-year risk, however, is only 1.1%. That should tell you something.

The average woman has a lifetime risk of 1 in 8--and the average age at diagnosis is 61. That being said, I was diagnosed at 64. But let’s also address the risk of “breast cancer.” Not all breast cancers are alike. 70-80% of breast cancers diagnosed after menopause are invasive ductal, and of a type (hormone-positive/HER2-negative) that is often treatable much less aggressively--lumpectomy, radiation, anti-hormonals, usually no chemo. And the “cancer” they’re talking about might, in your case, be DCIS, which by definition doesn’t metastasize.

If I were in your shoes I'd get tested (if at all possible) for other genetic mutations such as Chek2 or PALB2--heck, I had no family history but simply by virtue of my ethnicity and having a bc diagnosis I was tested for the BRCA 1 & 2 mutations as well as the first two. At your young age, you might be able to get it done free as part of a study. (Or you might get a second opinion from a doctor who doesn’t refuse to have you tested). As to whether to go for a prophylactic bilateral mastectomy, only you can tell if that’s right for you psychologically. Some women feel it’s like a sword hanging over their heads and want to totally foreclose the possibility by getting a bmx (but bear in mind cancer can still develop in the axilla, chest wall, etc.). IMHO, it’s sort of like dealing with a disastrous family cardiovascular history by getting all your coronary arteries prophylactically stented. Remember that once your breast is gone, there’s no going back. No matter how nice a reconstruction may look, it will never feel like a real breast and cannot nurse a baby. I would ask your doctors for the intermediate risk predictions, between the 10-year and lifetime milestones--sometimes looking at a curve can give you a better picture.

I would definitely err on the side of being as minimally invasive as possible, so long as your 10 year risk remains that low and you are contemplating having children.