How do I prepare for BMX?
Was diagnosed with Grade 3 DCIS, but was found in three separate areas of breast, no clean margins in biopsies. Hormone receptor info has not come in yet. Strong family history, doctor already suggested prophylactic BMX regardless. Probably getting genetic test on Monday.
Anyway, I just want to know how I should prepare physically and mentally.
What questions do I need to ask regarding the mastectomy itself?
I want the simplest procedure possible, mostly concerned about muscle loss, want upper body strength as I am an artist, need to be able to throw clay. Not to mention work in general, day jobs are physical too.
What things should I get ahead of time to make sure I am comfortable when I get home (Sleep helps, clothes, type of drains I should ask for, etc.)
I am strongly considering going to a metropolitan area to have the procedure at a breast center, since there are no breast surgeons or a breast center where I live. This will also mean a change of altitude (City is sea level, I live at 4000ft) are there risks in having the altitude change in the middle of all of this?
I will not be doing recon, just not interested at all.
I am busty, 40DD-DDD, any special concerns being big and going flat?
I have not had my follow up since the biopsy, so questions are whirling in my brain. Doc is on vacation until the 21st, not sure I will even stick with her, not a fan so far, she's a general surgeon, lousy bedside manner and it has been an uphill battle getting her to listen to me about my concerns so far. She total blew me off and was convinced two of the areas that turned out to be DCIS did not even need biopsy, I had to fight to get them to take the two other areas, one turned out to have a mass that was not seen in ultrasound or mammo.
Thank you!!!
Comments
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mermaid, the Mastectomy section of the main Breastcancer.org site will answer many of your questions, and you'll learn more from the helpful and supportive members here in the forums.
• The Mods -
Hi Mermaid!
I am sorry that you aren't having a good experience with the surgeon A second opinion, or a complete change may be in order.
When it come to the preparation, I guess we are all a bit different. I had the same Dx as you, but my reason for going straight to the Mx was because I didn't want to have the rads. My husband is a c5/6 quadriplegic, from a hang gliding accident 36 years ago. We live in a small coastal town and the nearest facility for radiotherapy is quite a distance away, so I would have had to stay in that town for 6 weeks, just not an option I wanted to embrace.
I didn't want to go for the BMX because there wasn't any involvement in the other side. I am almost 10 months out now, and absolutely no regrets. In fact I am amazed at how easy I found the adjustment to be. I call it the "New Normal".
There are threads on these boards that list all the stuff you need when preparing for this. I found I didn't use half of it. It's a lot of common sense really. Button front tops, nothing that has to go over your head. Satin pj bottoms, to help you slide off the bed. Amoena camisoles are very popular for the drains. I just used a lanyard and a cotton shoulder bag to hold mine, but again, I only had one side to deal with.
I found a "V", or Boomerang, pillow invaluable, in fact I still use it to sit comfortably for long periods. A small pillow for in the car to keep the seatbelt away from your chest.
My numero uno suggestion is throat lozenges! I had no idea that I would have such a dry sore throat from the breathing tube. I woke up ravenous, but couldn't eat because my throat was so dry. The nurses tried to find something but they only had those awful anesthetic lozenges which I hate.
You'll likely go home the next day. I would strongly suggest that you move things from the high cupboards down to a manageable height, and keep in mind that 10kg is the max weight they suggest you lift.
These are all practical things for you to consider. The mental issue is of course different for all of us.
For me, I just wanted it gone and really didn't have any emotional attachment to my breast, after it went bad on me. In fact, although I stress this is not for everyone, I spent the night before my surgery alone in a Hotel close to the Hospital for my early morning Sentinel Node Biopsy and Surgery, and decided I needed to disengage from my breast. I actually looked at it , and said "You've let me down, you have to go!" I know it sounds crazy, but a calm came over me and lasted all night. It really did work for me. I went into the Hospital ready for what was to come.
My surgery went exceptionally well, there was absolutely no pain, just strange sensation. I didn't need any pain meds, and actually spent the night wandering the halls and having coffee with the Nurses. I was out of there just 16 hours after I returned to my room from the surgery. I had the main bandages removed and had my first shower before I left.
There are a growing number of women who have decided not to have reconstruction. It was never a consideration for me, even as a Uniboober with a "D" puppy to contend with on the other side. I occasionally go half flat, but have found that I have been able to source all types of boobs, foobs and prosthesis, to suit any outfit for me, and I have a huge collection of bras camis, and tanks that work really well.
There are many ladies who go "Flat and Fabulous!" you'll find them on the boards here or on Facebook, and they will help you out with info about their experiences.
I do hope some of this is helpful to you. I wish you all the very best for your surgery, and I hope you find a surgeon that you're happy with. I do think it is important that you feel confident with your team.
It is a scary time, but I would say that coming here and seeking advice and support is a very positive thing to do. I am so grateful to the ladies who took me under their wings when I was starting the process.
Pleas let us know how you are getting on, and feel free to Pm me if I can answer any other questions or help you at all.
Take care! -
So sorry your facing BMX, Mermaid. Ariom gave you a ton of good advice. so I will only add that I, too, bought & worried about a lot of stuff that wasn't an issue at all for me. The only necessities I ended up needing were (1) button front pjs, and (2) t-shirts big & long enough to cover the drains. I hung my drains from a plastic belt around my waist (provided by the hospital) but I had such an aversion to seeing them, I wanted shirts to cover them up. (Just one of those mind-game kind of things). I didn't have any trouble putting t-shirts over my head & wore regular - but looser - by day two.
The best decision I made for myself was having a plastic surgeon assist in surgery even though I didn't reconstruct. I remember going through the recon picture book with him and he was pretty shocked when I picked a picture of a flat-chested post-MX woman and said "I want to look like that!" It took some convincing but he did it for me, and did my follow-up care. He had me wear a compression bra which I found to be a life saver; it was tight but the pressure felt good and I healed quickly. Now, I'm flat with smooth scars, and even some remaining tissue that looks like cleavage!
Best of luck to you.
Rachel -
I am an artist also, I make beads on a torch so my arms are extremely important to me. I did have to have lymph nodes removed and I wish I had been better informed about how many they were going to take. They took 9 and I do have mild lymphedema issues. I wish removing 1 would have been possible, but I was not educated to know that was a possibility.
Secondly, I was given an occupational therapist trained in lymphedema for 6 sessions, best thing that ever happened to me to learn how to move and take care of my arms. manual lymph drainage, exercises, all to keep my arms in the best shape possible. my insurance covered 80% and worth every penny I had to spend.
if you do have lymph nodes removed, of course you can still be a potter, I am still on the torch...and you will learn the right ways to work. You will adjust and while some things are difficult for me now, my creativity compensates for my inabilities. So ancer nudges me into different places with my art. Stay in touch! -
hi mermaid, I had BMX no reconstruction in Feb 2010. Went with a general surgeon I knew and trusted at my local hospital instead of a specialist an hour away. He did the sentinel node biopsy as well. I was in the hospital two nights and wore a compression bandage until the morning of discharge. I'm satisfied with the result and go flat and fab. Love not wearing a bra! These ladies have given you some great advice and I don't have anything else to add except some gentle ((hugs)). I'll bump a thread for you called Diary of a Bilateral Mastectomy. Best wishes! ♥
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Thanks, Ladies! All the suggestions are very much appreciated! -
I don't think anyone has suggested a lanyard yet, so I will. Try to get a lanyard like people use at conferences to hang their nametag on. Where it in the shower so that you can clip your drains up on it. The drains can't hang down or they will pull on the incision.
I slept in a recliner for a week or two. Best purchase/decision ever. I didn't think I'd be able to sleep in it, but I did.
I got my surgical camisole from TLC website. I did not like the one from Amoena because it was aloe-infused and gave off an odor.
I also had little or no pain from BMX with axillary node dissection, no recon. A lot of stiffness though under the arms and a lot of good physical therapy to get it back to normal. -
good suggestion, Mary, I used thin white gift-wrap ribbon as a lanyard, threaded thru the loops on drain bulbs.
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just saw a suggestion on another board for using panty hose to hold drains for showering. Tie knots in the legs put drains in the shortened legs and put the crotch around your neck. Dries easily and comfortable because its not as thin. Be aware, however, some PS will NOT allow showers until the drains come out.and it could be a couple of weeks. That was my PS. I washed my hair in the Kitchen sink. Washed up with a wash cloth. At first it helps if someone can help with your feet. Bending down may be a problem for a bit.
Much love
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