Bilateral mastectomy in my future
As I posted about last month, I recently found out that I carry the PALB2 genetic mutation. My family was part of the study published in the New England Journal of Medicine this past August on breast cancer risk and PALB2, that also got a lot of media coverage.
I’ve now met with a geneticist and a genetic counselor, as well as my longtime oncologist and surgeon, and all agree that I’m now considered “high risk,” and recommend that I have mammograms and MRIs every 6 months – which, as we all know, will undoubtedly lead to frequent biopsies. I don’t want to live with that kind of unrelenting anxiety, so I’ve decided to have a bilateral mastectomy.
I plan to schedule the surgery sometime in January. I’m 99% sure I DON’T want reconstruction, but will meet with a plastic surgeon next month anyway, just so I can be sure I’m making a well-informed decision.
Between now and January, I’ll take any and all advice from those of you who’ve been there! My partner and I are already planning to take advantage of Black Friday sales to buy a recliner, and I plan to ask for soft button-front flannel shirts and little pillows for Christmas. And I’ve started an upper-body strength workout with light weights – my surgeon insists it won’t make any difference in my recovery, but it makes me feel like I’m DOING something to get ready, so I’m going to stick with it.
One of my (male) co-workers is dressing up in drag for Halloween, and just said to me today, “I need boobies!” I told him – “Wait a few months, you can have mine!”
Traci
Comments
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Oh, my
Wow, Traci, that's a big decision and obviously well thought out. My daughter-in-law tested postiive for the BRCA gene and is monitored every six months, breasts and ovaries, and I can see the strain on her and my son. Sometimes there's a cyst. Sometimes there's a something that turns out to be a nothing, but is scary until clarified. Once there was a biopsy. All very stressful.
I have no first-hand experience to share with you, but I can offer my one hundred percent support and love and good wishes. I'm a two-hour drive away should you require something that can actually wait two hours.
You're very intelligent and informed and brave and I wish you all the best. I totally get why you want to feel like you're preparing for your recovery. I say do those weights and admire your buff upper arms:)
xoxo
Victoria
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Traci
I love your humor. Hang in there, you're making the right decision. Doctors shouldn't dismiss exercise so easily. I do a bunch more than the surgeon recommended and she is always impressed by my biceps when I go for check-ups. I did it super slow and had no lymphedema. Personally, I think you are very smart to get fit arms before surgery. It'll be easier to keep it up later when you will have to cut down in the first weeks post-op. Keep posting your funny jokes, Anna
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Victoriaaisling8 said:Oh, my
Wow, Traci, that's a big decision and obviously well thought out. My daughter-in-law tested postiive for the BRCA gene and is monitored every six months, breasts and ovaries, and I can see the strain on her and my son. Sometimes there's a cyst. Sometimes there's a something that turns out to be a nothing, but is scary until clarified. Once there was a biopsy. All very stressful.
I have no first-hand experience to share with you, but I can offer my one hundred percent support and love and good wishes. I'm a two-hour drive away should you require something that can actually wait two hours.
You're very intelligent and informed and brave and I wish you all the best. I totally get why you want to feel like you're preparing for your recovery. I say do those weights and admire your buff upper arms:)
xoxo
Victoria
Just wondering if your DIL could go on tamoxifen to help her chances? I feel for her living with that gene....Anna
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Traci I am with youbutton2 said:Traci
I love your humor. Hang in there, you're making the right decision. Doctors shouldn't dismiss exercise so easily. I do a bunch more than the surgeon recommended and she is always impressed by my biceps when I go for check-ups. I did it super slow and had no lymphedema. Personally, I think you are very smart to get fit arms before surgery. It'll be easier to keep it up later when you will have to cut down in the first weeks post-op. Keep posting your funny jokes, Anna
offering my support and advice from personal experience. It is a very brave decision and admire your courage.
It has been six and half years for me. and I did have reconstruction which at that time was important to me. If I knew about cancer back in 2008 as much as I know nw I would not choose reconstruction as extra burdern on my body. I support whatever decision you are going to make. It could be different tomorrow and you have time to think about it. Good with plastic surgeon!, i hoep he is a cute one.
Hugs
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Traci
Ugh, I am so sorry you are having to deal with this! For what it is worth, I only "needed" a single mastectomy but was also considered high risk and was told of the need for MRI's and Mammo's every six months. That was all I needed to know convince me to go for the whole tomato. I just didn't want that sort of strain and worry hanging over me all the time. It sounds like you have been considering this for a long time and are comfortable with your decision. That alone speaks volumes about you and how you live your life.
Just a pointer for your trip home after leaving the hospital. Bring a pillow with you for the car ride. Otherwise you can't use a seatbelt since the belt would cross right over the area where you had your surgery. Exercise is always a good thing. As soon as you feel up to it, you should start relaxed walks. My oncologist was adamant that I stay as physically active as possible. I really feel that that played a role in my quick recovery.
Treat yourself well this holiday season. You most definitely deserve it. I think you should have 3 coffees that are larger than your head!
All the best,
Clem
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Zero gravityClementine_P said:Traci
Ugh, I am so sorry you are having to deal with this! For what it is worth, I only "needed" a single mastectomy but was also considered high risk and was told of the need for MRI's and Mammo's every six months. That was all I needed to know convince me to go for the whole tomato. I just didn't want that sort of strain and worry hanging over me all the time. It sounds like you have been considering this for a long time and are comfortable with your decision. That alone speaks volumes about you and how you live your life.
Just a pointer for your trip home after leaving the hospital. Bring a pillow with you for the car ride. Otherwise you can't use a seatbelt since the belt would cross right over the area where you had your surgery. Exercise is always a good thing. As soon as you feel up to it, you should start relaxed walks. My oncologist was adamant that I stay as physically active as possible. I really feel that that played a role in my quick recovery.
Treat yourself well this holiday season. You most definitely deserve it. I think you should have 3 coffees that are larger than your head!
All the best,
Clem
Zero gravity chair!
Seriously! It was the one place that I could recline, sleep and be comfortable. I used my legs to be able to raise & lower it. Couldn't have done without it
Totally agree on the exercise - so important!
Lotion warmer - you have no idea how good that warm lotion feels, especially in the winter months!
Your sense of humor - which you definitely have a great one! Be sure to keep it - it makes the journey a lot easier
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Traci,
What a decision!Traci,
What a decision! Sometimes, tho, once we've made them it lifts such a burden. I'm glad you are gearing up and getting lots of info. One thing that you can get before hand...I did and I was thankful...was a post mastectomy garment. The one I had was a spandex cami. The thing I love about it is that it has pockets that went on the inside to hold the drains. I could adjust where the pockets went so there wasn't any pulling on the drain lines. It was quite comfortable. I got mine from a local lingerie shop in town, but you have time to google and find something fun. There is a nice looking top on the Confident Clothing Company website. http://confidentclothingcompany.com
Blessings on the days ahead,
~Mtmom
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What?mtmom said:Traci,
What a decision!Traci,
What a decision! Sometimes, tho, once we've made them it lifts such a burden. I'm glad you are gearing up and getting lots of info. One thing that you can get before hand...I did and I was thankful...was a post mastectomy garment. The one I had was a spandex cami. The thing I love about it is that it has pockets that went on the inside to hold the drains. I could adjust where the pockets went so there wasn't any pulling on the drain lines. It was quite comfortable. I got mine from a local lingerie shop in town, but you have time to google and find something fun. There is a nice looking top on the Confident Clothing Company website. http://confidentclothingcompany.com
Blessings on the days ahead,
~Mtmom
Oh, Traci, it's just never over for you, is it? I hope this decision will bring you peace of mind and everything goes well in January. We'll be here for you.
Hugs,
Suzanne
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"Brave"sbmly53 said:Oh, Traci
I am so sorry that you have to go through this. But, doing it proactively is so much better than waiting for the beast to strike.
You have a great attitude, sense of humor and support. You can do this.
big hugs,
Sue
Thank you all so much for your support -- I'm going to really need it as January gets closer.
It's interesting that several of you remarked that I'm "brave," and that's the #1 word I hear from anyone I tell. But I sure don't feel brave.
Because one of the reasons I'm doing this is to run away from constant screenings and biopsies and anxiety, and I guess part of me thinks I should be able to just suck it up and deal with those, instead of having major surgery.
All of my doctors have said that this my decision, and are being supportive, but I can tell they don't really get it, because I would "just" have to have MRIs, "only" every 6 months, and then "just" biopsies.
Anyone who's ever had a stereotactic breast biopsy knows there's no "just" about it, and there's no "only" about screenings every 6 months. My doctors don't really get that.
I'm sticking with my decision, my partner thankfully is 100% behind me, and I know it's the right decision for me -- I just don't feel very "brave."
Traci
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Yes, braveTraciInLA said:"Brave"
Thank you all so much for your support -- I'm going to really need it as January gets closer.
It's interesting that several of you remarked that I'm "brave," and that's the #1 word I hear from anyone I tell. But I sure don't feel brave.
Because one of the reasons I'm doing this is to run away from constant screenings and biopsies and anxiety, and I guess part of me thinks I should be able to just suck it up and deal with those, instead of having major surgery.
All of my doctors have said that this my decision, and are being supportive, but I can tell they don't really get it, because I would "just" have to have MRIs, "only" every 6 months, and then "just" biopsies.
Anyone who's ever had a stereotactic breast biopsy knows there's no "just" about it, and there's no "only" about screenings every 6 months. My doctors don't really get that.
I'm sticking with my decision, my partner thankfully is 100% behind me, and I know it's the right decision for me -- I just don't feel very "brave."
Traci
I'm sure you've heard the expression "Courage is fear that has said its prayers." That's what comes to mind here.
It's okay if the doctors don't get it as long as they perform the tasks you hire them to do:)
Follow what your insides tell you.
xoxo
Victoria
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Yes, brave!TraciInLA said:"Brave"
Thank you all so much for your support -- I'm going to really need it as January gets closer.
It's interesting that several of you remarked that I'm "brave," and that's the #1 word I hear from anyone I tell. But I sure don't feel brave.
Because one of the reasons I'm doing this is to run away from constant screenings and biopsies and anxiety, and I guess part of me thinks I should be able to just suck it up and deal with those, instead of having major surgery.
All of my doctors have said that this my decision, and are being supportive, but I can tell they don't really get it, because I would "just" have to have MRIs, "only" every 6 months, and then "just" biopsies.
Anyone who's ever had a stereotactic breast biopsy knows there's no "just" about it, and there's no "only" about screenings every 6 months. My doctors don't really get that.
I'm sticking with my decision, my partner thankfully is 100% behind me, and I know it's the right decision for me -- I just don't feel very "brave."
Traci
Hi Traci,
I think anytime you have to make any sort of "hard decision" in your life, it takes courage. The cowardly thing to do is to run and hide from making the decision, or sticking your head in the sand and pretending there is no looming "decision" to make. This is especially true when, as in your case, the decision you are making could be life altering with no easy answer. Let's see, you either have to have major surgery that will leave you with physical and emotional scars or you have to, every few months, get invasive and painful tests to see if you have agressive and potentially fatal cancer. You could just not deal with the situation at all or you can, ask questions, get second opinions, talk to professionals and gather as much information as possible and then make what is a really really tough choice for your life. That IS brave and you ARE brave.
Clementine
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Clementine_P said:
Yes, brave!
Hi Traci,
I think anytime you have to make any sort of "hard decision" in your life, it takes courage. The cowardly thing to do is to run and hide from making the decision, or sticking your head in the sand and pretending there is no looming "decision" to make. This is especially true when, as in your case, the decision you are making could be life altering with no easy answer. Let's see, you either have to have major surgery that will leave you with physical and emotional scars or you have to, every few months, get invasive and painful tests to see if you have agressive and potentially fatal cancer. You could just not deal with the situation at all or you can, ask questions, get second opinions, talk to professionals and gather as much information as possible and then make what is a really really tough choice for your life. That IS brave and you ARE brave.
Clementine
"We do what we have to, so we can do what we want to". I always remember those words. They have nothing to do with being brave IMHO. Your decision is tough to be sure, and both options are scarey, so no matter which route you choose, one could say you are "brave". Just say thank you. I'm not sure what the definition of brave is - I guess it means going forward in spite of fear (my definition, not Webster's). We all have episodes and degrees of braveness in our lives, and now it's your turn to face fear again - so I guess you ARE brave.
Suzanne
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Miss Traci - You are a brave sole, indeedDouble Whammy said:"We do what we have to, so we can do what we want to". I always remember those words. They have nothing to do with being brave IMHO. Your decision is tough to be sure, and both options are scarey, so no matter which route you choose, one could say you are "brave". Just say thank you. I'm not sure what the definition of brave is - I guess it means going forward in spite of fear (my definition, not Webster's). We all have episodes and degrees of braveness in our lives, and now it's your turn to face fear again - so I guess you ARE brave.
Suzanne
I am pleased that you have made the decision for the bil-lateral. Heroic comes to mind by your choice. I Agree, why have that beast in your rear view mirror -- waving at you every few months... the pins and needles that you experience playing the waiting game after mammo's and doctor visits -- the stress of it all at times is so unbearable.
Just a few idea's to help your recover in January...
Stock up on Pumpkin brownie mix - enjoy a favorite in January after surgery
If you can, please see your PT before surgery, and see if exercise he/she recommends for you. My surgeon provided me with exercises, however the exercises prescribed by PT were more intense.
make sure you understand how to milk your drains, and keep tubes clean
multiple sizes of pillows will be needed to keep you comfortable when sitting down, or laying down.
small sizes of tide, downey anything possible that you may have to lift a few weeks after surgery
Best thing I ever thought of .... seriously, adjustable flex hose shower head - HELLO, no shower for a few days -- nice to stand in shower, and clean your arm pits, lower region, and get water to drip off your back -- NO sponge bath for this Diva - I was able to shower, and not wet any stitches -
recliner to sleep -- if possible
a great book, shows on dvr -- something fun to do while you sit and recuperate - you can start writing your memoris .. lol
Please please please remember --YOU are not Super Women, this will be the time for you to heal -- you will get Bored, Tired, and Emotional. You may cry daily--, try to break things -- it's okay, this is part of the process.
I wish you the very best --
Gentle hugs dear Sister,
Vicki Sam
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Oh my this is one scary decision,
Traci you are brave, very brave to go and do this....I'd be scared sh*tless. In fact it's the reason I chose a lumpectomy, I couldn't bring myself to go ahead and do the other. I remember you were the first person whom spoke to me on this board, I'll always remember that and thank you for helping me not feel so scared. I really don't have much advice to offer I just wanted to stop in and say something. I hope I never have to face this type of surgery, but knowing good people like you and all the others are here is such a comfort. So thanks to everyone here, thanks for always offering helpful, kind and comforting words when we need them most. Be strong Traci, you can do this.
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Hey Traci!2Floridiansisters said:Oh my this is one scary decision,
Traci you are brave, very brave to go and do this....I'd be scared sh*tless. In fact it's the reason I chose a lumpectomy, I couldn't bring myself to go ahead and do the other. I remember you were the first person whom spoke to me on this board, I'll always remember that and thank you for helping me not feel so scared. I really don't have much advice to offer I just wanted to stop in and say something. I hope I never have to face this type of surgery, but knowing good people like you and all the others are here is such a comfort. So thanks to everyone here, thanks for always offering helpful, kind and comforting words when we need them most. Be strong Traci, you can do this.
Hey Traci! I just popped in and saw this. My first thought was Chen's "we do what we have to do so that we can do what we want to do". You and only you know what is right for your piece of mind. I don't have any helps or hints as I also had a lumpectomy, looks like the gals have given you some helpful hints. I do have to say, that if I had it to do over again, I'd go with the mastectomy. I'm sure it won't be easy, but I know you and you can get through it. You are strong and brave!
XXOO
Hugs, Debi~0 -
Reconstruction can be uncomfortable, at least initially. I only had a one-sided mastectomy and I didn't want to look too lopsided, so I went with reconstruction, but was surprised at how uncomfortable it has been so far. I can feel it every time that muscle flexes. It's weird. So far, I think I would still choose it, but I am not 100% sure because I found out after the surgery (it was immediate reconstruction) that I was going to have to have chemo and radiation, after all, and radiation can cause problems, but that shouldn't be an issue for you.
My genetic testing showed I have a gene they think might be involved in hereditary multiple primary/multicentric cancer (it is a gene involved in DNA repair). If I am any indication, I think they are right about that gene. As a result, I am thinking when all this treatment is over and I would be able to undertake more surgery, I will see if my insurance will cover a preventive mastectomy on the other side.
My concern is the possibility of spread to the lymph nodes again. It seems to me that the removal of lymph nodes causes a lot of problems. Lymphedema possibility, the need to use only the other arm for blood pressure / blood draws / etc, etc. Even if they don't suspect it has spread to the lymph nodes, they do the sentinel node testing, and injection of the dye for that was incredibly painful (and why can't they numb you for that, I don't understand yet), plus you lose those lymph nodes at a minimum. If I lose lymph nodes from both arms, where do they take blood pressure / do blood draws / etc? It's bad enough from the arms, I had a friend get an IV stuck in her neck in the ER. I do NOT want to go there!
Anyway, I am saying I completely understand your desire for a preventive mastectomy. The reconstruction decision is entirely personal, I know people who have done it and people who have not. Best of luck with your decision!
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