Decided to do BMX, but scared. Advice?
Hi All, I'm blown away by the amount of support on this website. Your feedback would be so helpful.
My surgery is scheduled for April 15. I have DCIS stage zero and another spot that is DCIS with micro invasions at stage 1A -- both are grade 3. All of my factors added together have helped me make my decision -- plus my deep gut instinct. I'll be getting a bilateral mastectomy. But, I'm still scared. Have you gone through the surgery? Any advice about anxiety leading up to it? What I'm grieving the most is the feeling that my body will never feel how it does now -- like my body. I know there are lots of resources out there to read. But, I think I've just come out of a dream state and realized that this is actually happening. I thought I'd start here. Would you be willing to share your experience with me?
Here's a bit more about my diagnosis: I am 41 and have smallish boobies. My family has three generations of breast cancer in every women on my ashkanazi side. I have the CHEK2 gene (which doesn't seem half as scary as BRCA, however it still made it all that much more real). The stereotactic biopsies were very, very painful. And, I wasn't crazy about the MRI experience (I had a panic attack in the middle of it). So, perhaps if one of these boxes were not checked, I would've felt more comfortable with the lumpectomy. Although I'm still scared of the surgery itself, my instincts feel so strongly that this will be the right decision for me. Thank you in advance.
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Being scared is totally understandable! It's a big decision, and a not-insignificant surgery and recovery. It sounds like this is the decision that will be easiest to live with for you, and that is the most important thing. Many of our members have shared their experiences with BMX, pre- and post-surgery, over on our Surgery forum. Lots of great info there!
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I hope you don’t mind me chiming in even though I’m not in your situation. When I was diagnosed my surgeon gave me three options, lumpectomy with radiation, mastectomy or entering a clinical study. And she laid them all out. Although I knew going in what my choice would be, I did ask myself later if I should have entered the study but seriously couldn’t imagine just getting mammograms every three months and waiting and watching. My point is I think with any life changing decision, we often have what ifs because we don’t have a crystal ball to know if it’s the perfectly right decision. It sounds to me as if you are making a very thought filled decision based on your own unique history which it sounds like the best decision for you at this moment in time. At a different time in your life you might have made a different decision and that’s okay. It’s natural I think to second guess yourself, we do it all the time about small thing in our life so it makes sense we do it about bigger ones. Any type of surgery is a bit scary so I’m sure that adds in to it. I think in terms of anxiety you have to find things that bring you joy in the here and now. And do some preparations for recovery for things that will bring you joy then (precook some of your favorite meals, get some books on audio files, make a list of shows you want to binge watch). Above all remember that you are a strong intelligent woman who has made a decision that fits your life. And it’s okay to be scared, it doesn’t mean you’ve made the wrong choice.
I know others can give you more details about their actual related surgery I just didn’t want to leave your post empty so late at night. If it helps great otherwise just ignore my rambling.
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Hi ilovecatsandfiddle,
I am so sorry that you to find yourself here.
The mastectomy itself while it is a major surgery, to me it is not as bad as I once thought. I did not have bilateral mastectomy (only remove left breast) so my experience no doubt would not require lots of recovery time like yours (I recovered well after 6 months) ;however, I was ready to go with bilateral mastectomy if my genetics came back with any genes that push my risk of recurrence higher; or if I had a clear family history of breast cancer. I would like yo share with you my thoughts few months ago when I had mammogram check at 6 month after mastectomy. The mammogram was done for the remaining breast; the technician gave the mammogram result for the radiologist to read. When she came back, she asked me to stay for ultrasound if I have time; at that moment, I was so scared; I didn’t think I had the strength in me to deal with it again within same year. Thank God that, the ultrasound came back with just a cyst; they just want to make sure everything. But while waiting for that, I thought about if I had bilateral mastectomy, I could avoid all of these. At that moment, I wish I did.
Anyhow, I am 10 years older than you, for me I don’t really care about my boobs. I am slope sided, but no one knows unless I share. All I am saying is the surgery is easy part, compared to the worry before and probably on going worry for every mammogram check-ups. That’s my own experience
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Thanks for the reply. I think I just discovered the forums. Thanks for helping to guide me. I really appreciate it.
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Moderators, thanks so much for your reply and for guiding me to use this site. I really appreciate it!
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Quietgirl, thank you so much for sharing your experience with me. I was very moved by your story, and really value your thoughts. Thank you!
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tntnsd, I really value and appreciate your feedback. It means a lot to hear your about your experience. THANK YOU!
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ilovecatsandfiddle - I, too was originally diagnosed with DCIS which was very difficult to find on imaging. We kind of caught it on a fluke. Because of that concern I chose to do a direct to implant nipple sparing double. Turned out my DCIS was actually IDC so I am somewhat similar to your current diagnosis of DCIS with micro invasion. The surgery was easy however I was someone who had some scar tissue and complications (hematoma and cording). I had a surgical redo about 2 1/2 years later and finally feel much better. Foobs look pretty nice as well and my PS upgraded me a size or two as I also was originally small breasted. Be prepared to have loss of sensation all over your chest area. This can be long term or you can recover some amount of skin touch sensation over time. I have a little touch sensation on the sides of my foobs. But I could still slam one shut in a door and not really know. You adjust pretty quickly to the feel of them, though.
You appear to be someone who has researched and thought out options. You do have to determine what is best for your physical and emotional health with informative guidance from your doctors. Mastectomy does not remove 100% of your breast tissue but it does greatly reduce a local recurrence risk. There are some studies out that indicate lumpectomy + radiation is more efficacious than mastectomy. That is a difficult comparison but in my opinion can be impacted by the skill of your surgeon to remove breast tissue. Your doctors should be able to clarify options for you.
Wishing you my very best, I know quite the mental and emotional hurricane right now. One step at a time, one decision at a time and you will come out the other side ok.
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ilovecatsandfiddle - I had a BMX with immediate reconstruction with TE's and I was terrified going into the surgery, I thought it was going to be a hard, long and painful recovery. Thankfully, for me, it was not. I was up and walking around in the hospital right out of recovery. The pain was very tolerable and taken care of with Tylenol. The most annoying part were the drains; I had 5, 3 of which were removed 4 days after surgery, 1 the following week and the last one at around week 5 after surgery. Restricted arm movement was bothersome because I didn't have the pain and wanted to use my arms and had to remind myself not to. All very doable though.
Be sure to have everything at waist level so you do not have to reach.
I hope that everything goes well for you. Please keep us posted. You've got this!!
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Had double mastectomy 6 days ago. The worst part for me is the drains. The surgery itself was not bad and I am not in much pain. Tylenol and an occasional ibuprofen take care of it. I had DCIS in 2016 and opted for lumpectomy and radiation. Had recurrence this February and decided to do a double mastectomy with aesthetically flat closure...no reconstruction. So far so good other than the drains...ugh...and having to wear a compression bra. I am looking forward to the day of no bra! I have an anxiety disorder and had a hard time before the surgery. Once the actual surgery date came, I felt much better and have been back to "normal" anxiety levels post surgery. My diagnosis before surgery was DCIS with microinvasion but just got my final pathology today. No microinvasion....just DCIS. Looking forward to getting the drains out and continuing the healing journey. For me the waiting before surgery was very hard.
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ilovecatsandfiddl, I am sorry you have to be part of our club. I did choose to have BMX even though 84 genes that were checked didn't show any predisposition for BC. My theory is that once the breast makes cancer once, can make it again despite the limited knowledge on who can have BC or not. I mean you are doing the right decision to remove the breast tissue and avoid future recurrences.
I was nervous before my BMX like everyone else. A friend of mine told me how lucky I was to have the option of this type of surgery. There are so many other women in the world that don't have it. I kept this thought with me the whole time before the surgery. It helped me a lot.
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kkubsky - so glad your surgery went well and that it was not terrible for you. Also happy to hear that you are less anxious then you were. I hope everything continues to go well for you and you get those drains out soon!!
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ilovecatsandfiddle:
I had a BMX with immediate expander placement, and later silicone implants.
I was not particularly emotionally attached to my breasts like many women are, but I have had hypersensitivity issues in the past and thought implants were going to be a big adjustment. I thought I would feel like I had these numb, foreign things in me with the implants, but the sensation is no different than my natural breasts. I woke up from surgery I was wearing a surgical sports bra and felt and looked normal. I had thought they had aborted the surgery for some reason and it took a while for me to realize that the surgery had been completed. I only perceive a difference when I touch the tops and outer sides, the skin is numb there so it feels like I am touching them through clothing. I have normal sensation to touch on the bottom halves, and I believe the chest wall. The experiences of others may differ though.
I'm about 3.5 years out from surgery and still happy with my decision but it's an individual decision but it was a decision I knew I might have to make from a young age.
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I had to look up BMX. I was told from my very first meeting after my biopsy said cancer, that my breast surgeon laid out the possibly process. A double mastectomy was laid out. I thought "What"! I was small breasted all my life. No bras were working for me until a few years back when i found a great one. I bought a dozen. Tumor time? My breast was not super small, but my tumor was 5cm and to take a lump out would leave my breast deformed. Margins would be needed, so i knew that option was out. I then headed to the tests. MRI, CT ,Electrocardiogram, Bone scan. This was in July. I found my lump mass June 20, 2021.
Aug 13 i was notified from the Medical Oncologist that genetics found a mutated gene. I had agreed to be tested. (I was a platelet donor at the Red Cross for 25 years, blood for 15 before that-They have my info on my blood-Why not). The test said i had BRCA-2. Blood donation does not show cancer.
Well, that changed things. Chemo took me to this one outcome.
Pancytopenia - a lowering of all three types of blood cells; red blood cells, platelets, and white blood cells, which may lead to low red blood cell count, low blood platelet count, and/or low white blood cell count.
This resulted after my 12 weeks of chemo and my 1 of 4 red devil transfusions. Then i took 27 days of a pill a day Talzenna. Same result. NO MORE CHEMO said the doctors at City of Hope.
What did happen was a mastectomy's on the left and at the same time removal of my ovaries and fallopian tubes.
My first surgery ever. All i know is i was wheeled into the surgery suite, talked to a bit, then woke up in recovery. My left breast was numb!!! I received the skin sparing mastectomy. I have an expander. I chose to stay about the same size. All my insides were removed by my breast surgeon doctor along with the nipple. No cancer in the 3 lymph nodes, vascular or blood systems. My plastic surgeon did a wonderful job. I had 2 drains. One came out in a week from the lymph nodes. The other close to 3 weeks plus. You need less than 30ccs over 3 days to have it removed. Your body cannot process more on its own. My sister came and helped me for 9 days, so i got pretty good myself for the next two weeks after she left. It is just annoying to clean as you feel like you are going to pull it out. I did not, but was grateful when it came out.
My breast is interesting. My own skin stretched. Not huge boobs, so it looks good. But the expander will be in there likely for a few more months. It just feels like something is sitting there. Odd. I will add that the scar was straight across the front and i was fairly bruised in the place the fill zone was put. Took 3 weeks to heal enough to put my 1st saline fill in. Now, 6 weeks out, it is real good. The drain hole closes in a day. In a few days the skin has filled the hole. We just keep it clean for 5 days or more with gauze. I bought more anti bacterial cream and gauze. Make sure to ask the office for more.
May 31st i am scheduled to have the other side removed. I can save the nipple as there is not cancer there. For me, there is no choice to not remove the whole thing. BRCA2 will hunt out that breast in the future. Barbie boob on the left and not the right? Get a tattoo on the left???? Also!! the tumor removed from the left in the mastectomy's was tested and i now am HER2 positive and not negative. Maybe why my tumor was 5cm????
Another detour path. Infusions. Herceptin and just possibly Perjeta. Seems Anthem denied the 2nd one because i was HER2- before. Well, that has changed.
I will end with this. Sometimes i just think is this real? Did i just loose a boob to a cancer i never, ever thought i would get. Skin cancer? Red head, hazel eyes and freckles and familial history. No familial history for breast cancer. But wait...genetic testing. Mom had melanoma at 26 and had 200 moles burned off her body. She had breast cancer when she passed away. She did not tell her five kids.
I look in the mirror and i tell God i am willing to let go of these 2 breasts i have had for 61 years. Let them go. One at a time. I took pictures of the two and will take more as i am now. I bought an instamatic camera so my pictures will only be seen by me. Let the 2nd one go. I have 2 friends with stage 4 cancer, both started with breast cancer that metastasized. I can take any pill, take any test or infusion suggest as they do. City of Hope has gotten me here in one piece. I trust what they offer and they answer all my questions. This is a journey.
I look forward to all your posts.
ilovecatsndfiddle........you are going to be ok. You are realistic, thoughtful and real. A day at a time i walk down my treatment path. I wish the same for you and all others on this thread.
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Wow! Thank you to every single one of you for the incredible sharing and advice. You have truly turned my entire week around!
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ilovecatsandfiddle,
I am 48 and also have a genetic mutation of the RAD51c gene. I had a DMX about 3 weeks ago and decided to have aesthetic flat closure instead of reconstruction. I live a very busy life with a 4 year old we adopted last year and didn’t want more surgery. I came through the DMX with no trouble and was back in the office and to the gym at 2.5 weeks. I have grade 3 IDC and I had a micromet in my sentinel node and a sprinkling?? In another lymph node from the ALND. I see my MO tomorrow to get the game plan. You will rock this. The surgery was not bad, I think the worry was worse than the actual surgery. I do have some nerve pain since surgery but it’s tolerable and sounds like it just needs time. Thins is a wonderful place to come for information and support. Sorry you have to be here but you did find the office, all things can be managed here
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I am weighing options of UMX and BMX...DCIS stage 3 (ER/PR negative) with a rather large area (4cmx4.5cmx2) and A cup.. so not much room to spare. I am waiting on genetics,which if positive, would be a BMX, but im not sure at this point if its negative. Im also wondering about experience with implants and how they feel/weight? I'm a runner and never having to deal with a lot of 'bounce'- I don't even know what to expect.
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My diagnosis is similar to yours, except my dcis is intermediate. I had about 5.5 cm in the left breast and am a b cup. I just had a bmx yesterday and did direct implants. I should be about the same size, maybe a tad smaller. I'm a runner, too, and I hope to return to it as soon as i can. I can't imagine what running with big boobs is like! Best wishes to you!
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