PBMX - April 20... help me prepare!

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  • Positano
    Positano Member Posts: 1
    edited April 2016

    You are a being very brave! I had a BMX on Feb 18. I was planning on having a PBMX in Dec 2016, however, they found a 1 cm tumour in my left breast during an MRI. I am BRCA2 with a strong FH (grandmother, mother and sister all in their 40s.) I'm 42. Just before my diagnosis I was starting to question whether I was being too aggressive by having the surgery - well I guess life had a different plan for me!

    As far as recovering, I had the same fears as you. It will be tough at the beginning but nothing that you won't be able to manage. I recommend having as much help as you can with the day to day stuff so you can focus on healing. The biggest challenge for me was sleeping. I would alternate between our sofa that reclines and sitting semi upright in bed. Taking pain meds first T3 for the first week after surgery and then robaxacet helped get me to sleep. Good luck and believe me - You got this!!

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  • katykids
    katykids Member Posts: 132
    edited April 2016

    I was in the hospital one night. They threatened to keep me a second night if I wouldn't take the percocet. I quite liked the morphine in my IV. ;) I wanted to go home, so I took the percocet. Surgery was a Tuesday, home on Wednesday. My husband went back to work that Monday. I was fine. I could make a cup of tea, grab a protein bar. I had stupidly refused help with dinner, so my kids were in charge of dinner. They are in HS and college, so they could handle it.

    My doctors were insane and said I could go back to work after 2 days (I owned my own business.) There is no way. I did go back after 9 days. And brought my HS son as my sidekick. He liked getting paid and working the cash register! I can't say it was the greatest but we do what we have to do. I am "retired" now and loving it.

    You are all going to be awesome!

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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    thanks for the encouraging words an recommendations Positano.

    For sleeping I have rented a powered recliner that can lift me to a standing position if needed. I've arranged for frequent house cleaning services while I'm incapacitated, have had cooking parties and vacuum sealed meals in single serving pouches I can heat and eat.

    What has led me to this decision and the need to marshal all my bravery was after testing BRCA1+, I was sent for an MRI. A 4mm spot showed up and a biopsy ordered. The MRI guided procedure and waiting afterwords was distressing and I decided that no matter the outcome of the biopsy, I did not want to live my life dreading mammograms or MRIs every 6 mos. I've had two breast biopsies in the last 7 years. Both kind of freaked me out. The first because there was significant pain during the procedure (insufficient numbing meds), the second because I knew I was BRCA+ I figured it was cancer. Now knowing I'm at heightened risk plus the fact I form microcalcifications and have dense breast tissue, every time I have a imaging checkup I'm likely to have more biopsies. Given the fact that I'm in the 87 % risk group, it really makes the decision obvious.

    I'm hoping that no cancer is found when they screen my removed breast tissue. At the moment, I'm living under the assumption that this choice is truly prophylactic and will help me avoid the path of chemo and radiation. I won't know otherwise until the surgery is over. Crossing my fingers for a clear result.

    How are you doing since your Feb surgery? You are 2 months along the path now. Are you having reconstruction? Are you receiving chemo or radiation? How are you feeling overall. I hope whatever route you must take, that you come out on the other side CURED! That is the goal. What we sacrifice to get there is only trading up for a long and healthy life to follow.

    That thought makes the loss of my breasts seem an unfortunate but minor rough patch in my life. I will recover and I will find peace with whatever I look like afterwards. I'm hoping for a good (if not perfect) reconstruction outcome and many years enjoying my retirement.

    I have a goal, I want to walk the Appalachian Trail. I'll probably do it in stages. This surgery will make it far more likely that I can achieve this goal rather than succumbing to the scourge of cancer. It really is a "no-brainer".


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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    Holy cow Katykids!! Doc said back to work in two days!!! Obviously that doc has never had this surgery!

    Even 9 days sounds too soon but I'm glad you were feeling well enough to try. I'm currently scheduled to be off for 4 weeks. I'm glad my company has great policies for medical leave.

    I've got all my project work arranged and covered so I can focus on healing.

    How are you doing now? When was your surgery? How long before you were no longer fatigued?

    Thanks for posting!

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  • katykids
    katykids Member Posts: 132
    edited April 2016

    LRG, my new PS says 4 weeks is his standard. Despite all of my activity, I developed two frozen shoulders. That is why I am a huge advocate for exercises right away. PS said work in 2 days but no ROM exercises for 6 weeks. I should have known better. So, I had my PBMX in July '15. Implants in Nov. The shoulder stuff is really a drag. I was a gym rat prior to all this. But with aquacise and back to beginner yoga, I will have hit the gym 4 times this week. My goal was 3. Exceeded my expectations. :)

    I don't think I was too terribly fatigued. It was really hot last summer so I did laps around the house. This should be a good time of year for walking as soon as you can get out. The removal of the drains aren't as bad as one would think. Just take a pain pill or tylenol, whatever you are on before you go and take a deep breath and it's over before you know it. A great big water bottle was essential. I drank so much water. I still do. I call it my baby bottle. And stool softeners. I can't emphasize that enough. I don't know if it happens to everyone. But, I swear, it was days. A customer at my shop was an OR nurse so she told me to drink a HUGE glass of room temp water every day and I would be fine. My stomach was so distended from the pooh baby in my gut!! My poor husband was reading up on enemas. Thank goodness for sense of humors. My sister eventually brought over Milk of Magnesia and that worked. Which tastes disgusting.

    Button front pajamas. Although I mostly slept in the hospital bra and a bathrobe. I preferred button up shirts to zip hoodies as I got my drain tubes caught in the zip (and lied to the PS and told her my cat ate it while I was sleeping on the couch.) I am a ding a ling! Should I be giving any advice here? I would not suggest ginger ale or other sodas in the hospital! I got wicked hiccups and that hurt the foobs!

    My pathology showed LCIS but since it was just LCIS and I had done the surgery there was no need for chemo or radiation. The BS was doubly glad we did the surgery because LCIS is so sneaky and I had a bunch of biopsies in March and that had been found other pre cancer but not that.

    You are going to be great! Less than a week now!

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  • katykids
    katykids Member Posts: 132
    edited April 2016

    one more thing a friend with full range did was put tape on the wall before surgery for both arms to know where to get back to!! Brilliant. I met her well after. Wish I knew that before.

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  • georgiaredskin
    georgiaredskin Member Posts: 214
    edited April 2016

    Thanks so much LRGO2016! I love your positive outlook.

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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    Tape on wall before... that is brilliant! I'll do it this weekend! As for the exercises, I want to start as soon as possible. I really can't risk frozen shoulders! I wonder why they freeze up like that.? I've got stool softeners and fiber to mix in my orange juice. Should do the trick. If not, I love prunes!

    Thanks everyone for all the advice! I have been cleaning the house like a madman. Want everything as clean as possible so I don't sit and stew on what I can't do. I've managed to catch a cold an am now on antibiotics as a precaution. Guess I picked it up when I flew home to see my parents last weekend.

    Tomorrow is carpet cleaning time. Getting rid of the pet stains and "tired" smell that goes with a house that has been cooped up all winter. Sunday I set everything up around the house. All my essential items at or below shoulder to waist height. Tables set up to put meds and other items near my recliner, remote controls within reach. Putting a power strip nearby for charging all things electronic.

    I have a friend who will baby sit our dogs (3 goldens) while I'm in the hospital so hubby can stay with me.

    I'm sure I'm forgetting something. Good thing my hubby will be nearby!

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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    Thank you kindly, Georgia. I've always been a happy and upbeat person. I intend to stay that way. I know I'm sad at the loss of my breasts. And a meltdown will likely happen the night before surgery. But fortunately I will be able to have a close facsimile of them in place by Christmas. My b-day is just a few days before my surgery so I'm giving myself a "Get out of cancer free" card for my birthday and a new set of custom replacement boobs for Christmas! My husband and I typically give each other practical gifts for these occasions. This year really takes the cake!

    I'm glad I can be uplifting for others who are experiencing so much worse than I. My heart reaches out to all of you!

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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    I have a general question for the forum. Is there a cheat sheet for all the abbreviations used in here?

    I'm assuming PBMX = prophylactic bilateral mastectomy.

    PS = plastic surgeon

    What does BS mean? I'm sure that is not the same BS I deal with at work ! ;-)


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  • sensitivehrt
    sensitivehrt Member Posts: 359
    edited April 2016

    https://community.breastcancer.org/forum/131/topics/773727?page=1#idx_1


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  • katykids
    katykids Member Posts: 132
    edited April 2016

    BS is breast surgeon


    You sound wonderfully productive!! :) and 3 goldens! I have one golden doodle. He is always by my side.

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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    ah. Thanks BS = breast surgeon. Not Beastly surgeon or anything similar. ;-)

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  • georgiaredskin
    georgiaredskin Member Posts: 214
    edited April 2016

    LRGO2016,

    I love your birthday and Christmas presents this year! My BMX is on May 5th, "el cinco de Mayo", so I decided that it is a life celebration party (and a going away party for my "girls"!). Hehe.

    I consider myself a happy person as well and refuse to let cancer take that away. I want to allow God to use these trials for good so that others can see hope and grace through tough times.

    However, I feel like with the recurrence rate so high, that I have a target on my back now. In order to face any fear or problems I have had in life, I always read and read, books and forums to empower myself with knowledge. In order to go through the trials, first I get knowledge in my brain and then my heart can accept it and better learn to deal with it.

    So every night I read the forums...and am so grateful they are here and all of you all are here. Praying for all of us!


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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    Hang in there Georgia! I really hope you win in your fight with this disease! I feel helpless to console you and other women facing this dragon but know that I am rooting for you with all my spirit and energy.

    Just a few days away from starting my surgical year. I can't even imaging what I'm going to experience. So I'm planning to just take each day as they come, do what I'm told by my medical team, and worry about the outcome later... I have to take this process in small doses.

    Like you I have read, Read, READ! These forums have been more helpful than talking to my med staff in many ways. There is nothing better than advice from those with experience.

    I'm a scientist and very pragmatic. I'm going to have to let my logical side take over for a while. The little emotional girl in me will cry I'm sure, but the scientist in me will gather data, analyze the outcomes and hopefully will help heal the emotional scars that will form and eventually fade.

    I hope you have as strong a support network as I do! I'm sending you my positive energies support from Texas. Keep your courage and wear it as a badge of honor. You are strong, beautiful and a gift to this planet and to me. Thank you for caring!



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  • Merit
    Merit Member Posts: 6
    edited April 2016

    Been thinking of you lots! This is absolutely the hardest time. I spent the two weeks before my surgery regrouting my kitchen floor and filling my freezer with dinners! As the day approached though I felt better. It had to happen. I didn't look back. No real choice. I'm almost 5 weeks out and about back to normal motion. Ugh. Takes a bit. Still no aerobic activity nor lifting per my PS.


    If you have time order a couple of the Yvette sports bras. They are selling on Amazon.com. I had to wear a special bra after the surgery but after a couple of weeks my PS told me I could wear regular sports bras. I didn't have the desire to shop and try on different bras so I looked on line. These bras zip up the front and honestly I don't look at all like I had surgery. The implants are square shaped but in the bra I look rounded again. My PS walked in on me as I was changing and she was astounded at how I looked and said she will be buying some of these for her patients to try out. I'm normally a 34C but am wearing a 36B. Hope it helps. I really feel much better when I'm back in my routine and I'm sure you will too. Takes a ton of courage to face this head on but you are so far ahead of the game! Good luck!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited April 2016

    Good luck everyone! LR - I have a natural curiosity about all thing scientific and mechanical and I took the opportunity to learn all I could about the meds, equipment, process.. I don't take the preop relaxing meds because ironically I am always relaxed going into surgery - I think the op room peeps think I'm already loopy when I talk to them pre-surgery but I'm not.

    I picked my hospital and surgeon, so I just trust them. I KNOW they're gonna take great care of me. I feel safer going into surgery than almost anywhere else. I had the most wonderful young nurse who took care of me overnight, she reminded me of my own DD the nurse so that was a good experience. The morphine made me nauseous for a few minute but I got through it. My PS had me get pre-op emends pill -$50 a pill but so worth it. You got this!

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited April 2016

    "Tape on wall before... that is brilliant! I'll do it this weekend! As for the exercises, I want to start as soon as possible. I really can't risk frozen shoulders! I wonder why they freeze up like that.? "

    I don't want to discourage anyone (and the tape is brilliant so that you know where your presurgery reach was), but you may not want to raise your arms above your shoulders for at least the first two weeks post-surgery. Surgery can cut lymph channels and you want to give them the best chance possible to reconnect & heal. That apparently only happens during the first two weeks (or so) after they are disturbed. After that, they apparently will have healed with or without reconnecting. If it's without reconnecting, you've increased your chances for lymphedema.

    Take a look at the lymphadema board for more information.

    Yes, exercise, but give your lymph system a chance to heal before you work on full ROM.

    HTH,

    LisaAlissa

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  • katykids
    katykids Member Posts: 132
    edited April 2016

    Great advice Lisa! Yes, not above the shoulder. I did read that. Thank you for that wonderful advice!! I have to make it to the Lymph specialist one of these days. It's just too far of a drive right now for me. I think the video I shared from Memorial Sloan Kettering specifically stated not to go above the shoulder.

    My understanding, speaking with the Lymphatic specialist was that even if they don't remove lymph nodes they can still disrupt the channels with surgery.

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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    thanks for the cheering section ladies. IT really helps muster my courage. I feel like a Newby sitting on the rail at the top of one of those ski jumps... scared to death I'm going to wipe out on the way down the slope or have a rough landing at the bottom of the hill. My nerves are stretched and I already had a bit of a meltdown today. Back in tenuous control right now.

    My rental recliner is in place. I got my face and under arms waxed today. My freezer is packed with meals. Need to pack my bags for the hospital. I have appointments for a manicure and pedicure on Monday. And a massage and hair cut/flatiron Tuesday (my hair is curly and tangles - flattening it will make it easier for DH to brush it for me).

    Thanks for the cautionary comments Lisa. Tape will go on the wall tonight but I will wait to get the ok from my docs before trying any ROM exercises. I've studied the exercise links for PBMX +TE . Minimal movements for two weeks. I understand and will comply. (I'm a workout rat so this will be hard - erg)

    Don't have a definite time yet from my surgeon - he has been out this week attending his annual board cert training courses. Should get my appointment time on Monday.

    I've run myself down working doubletime on job stuff and prep for my convalescence. Got a cold two days ago so my PC put me on antibiotics as a precaution. Starting to feel better. Will be resting up for next 3 days.

    Working on Monday but taking Tuesday off to get mentally ready. Once I'm at the hospital, I'll calm down or tell them to go ahead and help me relax. I'm certain this is what I must do. Hoping it will turn out to be soon enough to truly be prophylactic.

    Thank you all for communications. I REALLY do find strength in your words!

    LRGO

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  • georgiaredskin
    georgiaredskin Member Posts: 214
    edited April 2016

    Thank all of you lovely people for the great advice!!

    LG, thank you so much! You are the sweetest! You are beautiful and a gift to me and the planet as well! That is like the sweetest sentence I've ever heard!

    I will be thinking of you and praying for you up until and through your surgery and am looking forward to learning from you what to expect. It sounds like all of your ducks are in a row! Xox

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  • georgiaredskin
    georgiaredskin Member Posts: 214
    edited April 2016

    LRGO,

    Are you feeling better? Hope the cold is going away! Hope your appointments are going well. I'm thinking of you getting ready for your surgery on April 20th!

    💗Georgia (weird, it keeps cutting off the a so it looks like Georgi

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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    Thanks for checking in "Georgi" . I'm still running a low grade fever. And have a non-productive cough. Put a call in to my surgeon yesterday. Left a message. I'm in Houston so yesterday was a bit of a "wash" so to speak. So I did not hear back from my BS. Entirely possible he could not get to work with all the flooding! I'll be calling his office first thing today!

    Only about 24 hours left with these cancer-prone boobs in place. Unless they postpone surgery to allow me to get over this cold. I called my BS office and told them about the cold. Have not heard a response yet, flooding has disrupted normal operations in Houston, Ugh. Fever at 99.8. Dangit! Tylenol drops the fever, but wonder if they need a non-medicated temperature report to decide? Hesitant to take tylenol before I go to the doctor.

    Oddly enough, my BS has not told me what time to show up on Wednesday. I called the surgery center to check. They said it looked like I was on the schedule for a 6 am arrival, but to check with my surgeon to confirm. Wish he would call me back!

    How are you doing? I'm praying for you and your doctor's to successfully remove all the cancer! I can't imagine what you are going through. Hang in there. When this is all over, we need to have a simultaneous party in our respective cities! A cancer-free celebration!

    I play percussion in a band here. I plan on beating a few drums when this is over and I have use of my arms again! Woo hoo!

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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    my surgery is off for tomorrow. .. I'm absolutely deflated right now. I been steeling myself for tomorrow for months. ... now I have no idea when we will proceed. ...

    Heck.....

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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    going to sleep and rest now... must focus on getting over this cold. good Doctors.... I was worried about coughing after surgery and this cold has me coughing a lot. Disappointed but right decision

    Thinking of my April surgery sisters. Good luck ladies!

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  • georgiaredskin
    georgiaredskin Member Posts: 214
    edited April 2016

    Hi LRGO, (lol @ Georgi!)

    I'm so very sorry you feel so bad and that your surgery had to be postponed, and for the flooding in Houston. I pray you feel better soon and then they can reschedule your surgery right then! Before going under for surgery I always wondered what if I cough what would happen and got paranoid about any bit of phlegm I had. It definitely was the right decision, you would be so miserable dealing with all of that at once.

    I am doing fine, thanks! My husband and I actually are going to the beach in Florida for 4 days, the first time ever away without kids! We are celebrating our 5 year anniversary and it's a going away party for my boobs lol! Plus we are celebrating life. We leave on Friday as it is 3 weeks out from my last chemo and when I get back it will be a week and a half before surgery. So today I bought a new swim suit and a few new shirts and shorts, as well as having my pre-op doctor's appointment and labs. So I am a bit tired and plan to pack tomorrow.Thank you so much for your prayers!

    Yes please rest up and heal fast!

    Georgia 😊

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  • katykids
    katykids Member Posts: 132
    edited April 2016

    I am so sorry. :/ Thinking of you and hoping that cold goes away very quickly! xoxox

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  • Merit
    Merit Member Posts: 6
    edited April 2016

    Ugh! Right call but I'm sorry you have to prolong this. Hang in there and get better soon. Thoughts and prayers coming your way.

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  • LRGO2016
    LRGO2016 Member Posts: 242
    edited April 2016

    Georgia, have a wonderful and carefree time at the beach. That is a great idea. I'll be thinking of you as your day with the surgeon approaches.

    Thank you Katykids and Merit for your thoughts as well. I know this was the right decision by my doctors and though I broke down and cried when I found out, I am relieved now. I was a lot more worried about the coughing and fever than I realized. After accepting the news, I was able to sleep for nearly 6 hours! I think that is the most sleep I've gotten in days! I awoke drenched in sweat so maybe the fever has broken and I'm on the mend. Either way we are doing the rightthing. Thank heaven for the fabulous doctors I have access to here in Houston.

    Thanks to everyone for following my thread and staying in touch. Your comments and interest are comforting.


    LRGO

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  • georgiaredskin
    georgiaredskin Member Posts: 214
    edited April 2016

    Thank you so much, LRGO! We leave the house at 4am tomorrow morning! I am so very excited. I fatigue easily especially after doing so much lately. I believe I will just meld into the sand the whole day looking for dolphins! And thank you so much for your thoughts!

    How are you feeling today? Did they say when they were going to reschedule the surgery or just play it by ear? So glad you realize it wasn't the right time but I know it is such a bummer to be sick and have to postpone it. Hang in there!

    Georgia



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