On the fence between a UMX and a BMX with PalB2 mutation.
Hello. This is my first time on this forum (actually...any forum.:) I have been diagnosed with 9 x 2 cm grouping of micro-calcifications on my left side and will definitely be getting the UMX. I'm trying to decide if I should get the prophylactic mastectomy on the right side. I have dense breasts and absolutely no history of BC in my family. However, I do have the PalB2 mutation as well as the NBN mutation.
I'm new to this all but I'm thinking that the mutations are most likely the cause of my breast cancer. Having every cell in my body with a couple of mutations that could cause BC in my remaining breast is a bit daunting. I don't really understand how risky the gene mutations are...the numbers are so vague to me.
I worry about missing BC with dense breasts as well as the time/worry/pain of getting biopsy after biopsy. (the boob bed, crazy-scary drill and eternal boob-press was not my favorite moment.) I have way too many kids to spend my life talking and thinking about my boobs!
On the other hand I don't want to take a perfectly fine breast off just as a knee-jerk reaction to fear. I understand how serious this surgery is I'm aware of all the risks. I hate thinking about not having any nerve endings in my entire chest. It all seems so extreme for a Stage Zero, non-cancer, cancer.
I do have all the help lined up for help with my children and husband for this upcoming surgery, and we'll be moving to the other coast this summer...away from all my support and family. Another thing to consider.
I figured if anyone out their could relate to my situation or give me real advice (not the common...'oh lucky...a free boob job') it would be women in this community.
Comments
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Chris - if you haven't already, be sure to visit facingourrisk.org - FORCE - Facing Our Risk of Cancer Empowered. That website has tons of valuable information about genetic cancers, guide lines for screenings and procedures, etc. A great resource site with a forum to ask questions, similar to this site.
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chris-miss - while many diagnosed with dcis struggle between over and under treatment of a stage 0, perhaps it shouldn't even be called cancer, cancer - lumpectomy, umx, bmx, radiation, no radiation, tamoxifen, no tamoxifen based on our personal preferences, ability to tolerate risk and the commonly accepted medical practices which appear to be changing - you, my friend have two additional issues to consider and that is your known genetic mutations and your very dense breasts. It appears that you are genetically more prone to breast cancer than the norm, yes, your first, and hopefully last, breast cancer diagnosis is DCIS and not Invasive Cancer - you can consider yourself lucky for that. I think BayouBabe and I are thinking the same thing - let the information you garner about your genetic risks guide you in your decision-making. None of the pros and cons you list are in any way frivolous. This is a very difficult decision to make - and I am sorry you are faced with it.
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I don't think anyone here can tell you what to do. Fortunately, time is on your side. There is no rush to do something. Have you had a chance to talk with a genetics counselor? They may be able to give you some idea of your risk.
In my case, I have a terrible family history of breast and other cancers, and I have the PALB2 and Chek2 gene mutations. My genetics counselor put my risk at 45% or more. Yikes. I'm 59, so well past child-bearing age. It made the decision to take off both breasts a little easier (I had a lumpectomy in 8/15 and BMX in 2/16.) Still, as you can see, I took several months to make that decision.
We just got word that my 22 year old daughter also has the PALB2 and Chek2 mutations. She needs to see a breast specialist to come up with a plan. That's what I'd suggest to you, if you haven't done so already.
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Thank you BayouBabe for the website information. I looked it up and perused it for awhile. There is so much information there. Everywhere, really. Jelson...thank you for your thoughtful post. I really do feel lucky to be in the preventative stage instead of fighting a much harder fight. I feel a little bit like a charlatan, coming in on the pink coat-tails of all our brave friends and family who have given so much to Invasive Breast Cancer. I know what I have is real threat to my family and myself, but it almost feels like a completely different story. I dislike placing my 100% survival rate problem alongside those who are fighting so hard for their lives. There is no downplaying the treatment, however. It is intrusive and extreme and the risks are so very on my mind all the time. It is my nature to think and research through my decisions instead of relying on my intuition or feelings. The problem with that approach this time, however, is that there doesn't seem to be a clear answer no matter how much I study or learn. MustLovePuddles - I'm sorry that your daughter also has the PalB2 mutation. It must be a hard burden to carry for someone so young. However, having the information early could also be very empowering for her. At least she can make all her choices on her terms and not in fear. I have no idea when I'll have my own daughter tested. Thank you, too, for your advice. I guess if I don't find a definitive answer for myself, at least I can find the least damaging one.
ps...not sure how to link my comments back to those who responded. Do I use a hashtag?
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Chris, I think one of the big challenges with PALB2 is, indeed, knowing just how high the risk is, since the range is fairly wide. (I'm not familiar with effects of the NBN mutation.)
I'd echo the advice to have a long sit-down with a good genetic counselor if you haven't had that opportunity yet. My session was pretty brief and all but uninformative. If yours was too you could ask for a referral to another, even if it's outside your health plan.
You do have time to not only research this but to listen to your own bodily responses as you think about this . Clearly, it must be dealt with but you've already dealt with a major issue.
If you've had an MRI of the right breast it could be helpful to sit down with your surgeon and discuss whether any issues of future concern are seen, discuss what a screening schedule might look like and what chemo-preventive steps (i.e., Tamoxifen) might be advisable or useful.
It's a tough decision and I wish you the best with it.
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Hopeful82014 - You are right. I do need another sit down with my genetics counselor. I don't think I had the right questions when I sat down the first time.
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HI Chris-miss.
I was diagnosed with Stage 1 BC in November. Like you, I have dense breasts. Unlike you, I have a family history. My surgeon gave me all the options: lumpectomy, umx and bmx. I chose the bmx and I am glad that I did. For one thing, I do not have to worry about my right breast getting cancer and having to go through this yet again. Second, my surgeon told me that the recovery for a umx and a bmx were the same amount of time. Third, she told me that my non removed breast would continue to age and I would might not like the look of one perky breast and one saggy breast. (I had never considered that b/c I was so shocked and anxious about the diagnosis that I was not thinking if I would be "pretty" after all of this. I wanted to be alive.). I was told by the women at the cancer center that some women who opt for the lumpectomy or the umx began to obsess about their next mammogram or any unusual lumps. I KNOW that I would have been that person. Prior to surgery, one of the radiologist told me that I was "doing the right thing" by having a bmx. A total stranger but one that, no doubt, has seen a lot. So, here I am in February. I have the tissue expanders in (not comfortable) but I am cancer free! (Well, about 99% cancer free.) The pathology also showed that my right breast had some per-cancerous cells in it so it would have only been a matter of time before I would have had to have that one removed. Keep in mind - I have a family history. I do not have any genetic markers for cancer - zero - but my family seems to have a breast cancer gene (mom, cousin, aunt) so that helped my decision. It will all work out. Sounds like you have a lot of family/friends to help you out. And no it is NOT a free boob job! I get so tired of hearing that!!!!!!!!!!!!!!!!!!!!!! Take care. Big hugs to you.
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Katemom-
Thank you so much for sharing your story! Firsthand experiences like yours are so helpful to other members in the same situation. Thanks again, and welcome!
The Mods
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Katemom.
Thanks for your story and advice. I've been going crazy trying to get all my ducks (ducts
in order before my surgery on the 7th. I never thought about the whole progression of one boob sagging while the other one stayed perky for life. What a funny combo they would have made in 30 years. I have finally decided to go for the BMX after all. I had gone through it a million times in my head and never really felt settled with one answer or the other. Finally, after giving my friend a run down of my pros and cons, she stopped me and said, "Its sound like you already know what you should do...it's just that you don't want to do it." That hit me. I really do think that the BMX is going to be the smartest way for me, personally, to go. I really don't want to do it. I don't 'want' to do any of it. I need to.
I had lots of other plans for my march-july lined up before. Moving across the country with 5 kids , a dog, a bird and a ton a fish with my hubby for one. Birthdays, spring break, school activities. Lots and lots of stuff. DCIS and chopping off boobs were no where near on the list. That's life for ya. We make all these great plans and then life lets us know what we really are going to do. I guess, in a way, I'm still doing what I planned on. I'm taking care of my sweet family by taking care of myself so I'll be able to move, go to school activities, celebrate lots of birthday. It just looks a little different than I thought it would.
No one here asked to be in this club. I always see my life as very long hike. Sometimes the way is easy but mostly it is a rocky, uphill, tough journey. We carry burdens we never expected to carry and we find joy and beauty in places we never thought we'd visit. Sometimes we are surrounded by family and friends and sometimes we travel alone. The wonderful part about this unwanted club is that we are able to reach out to others from all over the world but on this same emotional path and help lift each other's burdens just with encouraging words and kindness. I may have not wanted to be here, but I'm grateful to have found this community (both online and in person) and to be inspired by strong spirits and brave souls. Thank you!
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Hi Chriss-miss, I am going through a similar situation as yours. Diagnosed with DCIS on the right breast, spoke with the plastic surgeon and he encouraged to do a bilateral because he thinks it is near impossible to achieve symmetry. All my genetic testing came back negative so my chances of having cancer in the healthy breast is 5-10%, similar to that of the general population. Since I'm still "younger" in my early 40's, he felt I would be more at risk of having cancer in that breast. My husband, who is a physician, also feels the same way, though he wants me to make my decision. He also feels that since I am someone who has always done the right things....never smoked, never drink, exercise, healthy weight, eat organics and still get breast cancer, what are the odds? It would be nice to not have to worry about anymore mammograms or MRIs. But I am still going back and forth on this issue..it's a tough. Good luck and best wishes.
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