Bilateral Mastectomy Decision

Hi everyone, great comments

Hi GreenCowgirl, thank you for the welcome. You have lots of great advice in this forum for your upcoming procedure. My worst time was the fear I had pre-op. Afterwards was so much easier in comparison.

I'm 3 weeks out from BMX/TE's and doing fine. My advice to you is set up a quiet, peaceful area in your home where you can rest for the first few days to week after surgery. I bought lots of pre-made soups from Costco, frozen fruits and berries for smoothies and made sure I had good healthy food. I even bought a "Nutri-Bullet" which I use every day. You will be most comfortable sitting up in a recliner or on a couch with lots of pillows. I also bought a compression sports bra from Sears, the type with a zipper down the front - wore it day and night the first week or two.

The medications to take for pain are whatever narcotic is prescribed for you (make sure you know your allergies). I had oxycodone without the added tylenol. Since there is a limit to how much tyenol you can take in a day, I took them separately, and also took Robaxin, a muscle relaxer to help with the stretching of the pectoralis muscle. I was pretty comfortable with this regimen. After about 3-4 days I was off the narcotic and only taking NSAID, tylenol and muscle relaxer at night, sometimes during the day. At 3 weeks I am off everything, although I did ask for a prescription for Ambien, a sleeping medication.

After about a week when most of the pain & swelling went down, the tissue expanders seemed noticeably uncomfortable. My compression bra helped a lot, and I used the muscle relaxer and NSAID. I'm a Nurse Practitioner but not familiar with breast recon.

Last night my husband and I went out with friends and I dressed up in a camisole (no bra!), cute grey faux chinchilla jacket and tight black jeans, dangly silver earings and makeup. This is NOT my usual getup, I usually dress conservatively  so I got a lot of whoo hooo from my friends. It was a lot of fun.

I, too, want to get the cohesive gel implants, no nipple construction but do want light pink 3D tattoos, no bra needed and hopefully the tattoos won't show through sheer clothes. Think of the fashion possibilities!! 

After your surgery pls make sure to check in regularly as we have a lot of collective experience and can help with the ups and downs. Hang in there with the drains, they are only temporary and you will feel soooooo gooooood when they come out.

~ Michelle

Shellshine, I am considering the no nipple option myself, just going with the 3D nips. My PS said if I went that route and decided I wanted nips after the fact, she'd do the surgery and just touch up the tatoo. I'm at least 6 months away from that surgery so I have time to think about it. So many decisions!

Hi all, have been reading this thread since getting the pathology report back on my lumpectomy done Feb 7th.  As my surgeon called it I have a "very busy breast".  There was DCIS, LCIS and papillary carcinoma.  The report was 8 pages but came down to I need a mastectomy.  Now the question is, do I do one or both?  I am large breasted and have been going through this process with biopsy and MRIs and more biopsies since December.  Now I have my final outcome to remove the Left breast.  I don't really think I want to go through this ever again and would prefer to get them both done now.  Especially since I can have immediate reconstruction done.  No chemo, no rads needed.  Just surgery, and cancer will be gone (hopefully for good).  Here is some of my background.  I am a nurse and work full time+ as the main wage earner.  My husband is disabled from a stroke 7 years ago and is end stage renal disease.  We do home hemodialysis 5 days a week.  I am his main caregiver.  Nothing like this was ever supposed to happen to me!  I have 4 children (3 at home) who help out a lot.  My co-workers and boss are great support as well.  With the lumpectomy all rallied to help out.  So, all this figures in to my decision in having BMX??.  I have appointments scheduled with BS for post op care and to go over my path report.  Also will see plastic surgeon for reconstruction process.  Still wrapping my head around all of this, overwhelming!  Good to have a place to go and vent and get such good information. 

I was dx with DCIS in my right breast. I had a breast MRI done to see if anything else was going on. The MRI showed 'stuff' in the left breast. They couldn't tell me what the 'stuff' was without doing another biopsy. After much thought, doctor appts, genetic counselor, I chose to go with a BMX for peace of mind (to try to avoid possible reoccurrence). I am negative for the BRCA gene, but have a very strong history of breast cancer in my family. The decision of lumpectomy, unilateral mastectomy, BMX is a very personal choice. Do as much research as possible (which I think we have all done) and go with what is in your heart/gut. It took me quite some time to come to my decision, and have not regretted my decision at all. Please ask if anyone has questions. We all have tons of support on this site.

Thanks for all the great advice.  I will look at all the options and choices carefully, it is a lot to absorb.  I know it will be a lot of hard decisions with utilizing all my resources.  I am a labor and delivery nurse, but have maxed out vacation and illness time, as of course I'm never sick or take a vacation!  I guess I'm due to use it.  I do worry about having to go though this again by leaving the right breast.  I have microcalifications but no other signs but would worry about it showing up as I had nothing except microcalifications 2 yrs ago on my last mammogram in both breasts.  I just think I would feel better having them both done now.  I will talk to my bs and ps when I meet with them next week.  Will keep in touch thanks again!

Dear Nancy, I would try to keep it simple in planning the immediate post-op period. Can you find someone to take care of the kids at home and just stay in the hotel with your husband or close friend?  Don't rent a house, girl - too exhausting. The first few days you need to lie low with no, and I mean NO other  responsibilities. I wouldn't drive home immediately post-op. 

I actually went to my mom's house for a few days because it is quieter than mine.

Dear Mamasixtaz, Lizzie gave you good advice. Consider  scouring  your community and work benefits and look for help for your caregiving and housekeeping responsibilities. If friends, family, co-workers offer to help - TAKE IT. Confirm the dates, times and what they will do before your surgery. It's important to follow the activity restrictions so you don't increase risk of complications and delay healing. Take care of yourself first - you soooo deserve it! 

~ Michelle

Hi all.  This is my first post because I have been reading so many posts since my diagnosis on February 1st I thought it was time to join in and draw in the support.  Thank you Shellshine for answering all my questions so eagerly.  Much discussion, research and agonizing have led me to the decision of BMX with TE, scheduled on 2/28/13.  Last appointment with the PS tomorrow.  My surgeon as well as the PS do not think I need a SNB but I am questioning the loss of my breast and the loss of access to the SN.  Would love to hear feedback about that!

It's so comforting to read and read and read some more about the course of your treatments and your results and your ups and downs.  Just not one of those things I ever wanted to come face to face with.  It was always for someone else that I did the BC walks and wore pink and raised money....not for me! 

Another strange twist to my history is that my brother, four years younger than me, was diagnosed with Invasive Ductal Carcinoma and is having a UMX the week before my surgery.  Now aren't we candidates for BRAC testing??? 

And what about my poor physician husband who has too many facts and figures in his brain to stop worrying for two seconds??  Phew!!

Thank you everyone for being here.   Kathi

Kathy I am in your same shoes right now, so i can really relate.  I decided on the BMX with TE's and we have the same surgery date feb 28!  I will be thinking of you.  My surgeon said she always does a sentinol node check, since it is her only opportunity while the brest is still attached.  Makes sense to do it now, rather than later and have to remove all nodes.  I will have the dye injection the day before surgery.  I am also a DCIS grade 3 girl, but this is a second dcis grade 3 in the same breast.(i did lumpectomy/radiation in 2010) This is suppose to put mx and lump/rads on the same playing field, but i was not lucky i guess. i agree with Ariom and her surgeon.  BEst wishes and have you in my thoughts.

Nancy

Kdh  So glad you are getting to do the SNB mapping, its a great safety card. Good to know, noone mentioned anything other than recliner, we have a lazy buy and my fav comfy rocking chair.  i was thinking about getting that big foam wedge for the bed?  How nice to have a Doc/hub on call!  Yes!  To the braca testing, for both you and your brother.

If I could have seen into the future i would never have done radiation.  I hated the whole idea of it, and now i will contend with possible problems for reconstruction due to it.  They are attempting nipple sparing, fingers crossed. Yes my brain is going non stop and i am trying to de-stress but its hard to do. I have a constant tighness/lump in my throat feeling that has not gone away for about a week.  A glass of wine work, but only temporary, i i can't just drink wine non-stop-or can I??   hahahahah  BEst wishes of warmth,health and speedy recovery to you.

Nancy

Just catching up on the posts betwen you two Nancyand Kathi.

You both have a great attitude to this. I know how daunting it is while you are waiting for results and then Surgery. There are so many big life decisions to make in a short time. I too had the lump in the throat, and dry mouth syndrome big time!

If it is any interest to you, I had the SND tracer done early in the morning of my surgery. I was terribly nervous, but it didn't hurt at all, and the young man that was doing mine talked me through it. My nodes didn't light up immediately so I had to spend some time massaging the dye through, again, no pain. I had to repeat this I think three times until the SN showed up on the screen. He came running out of his little office waving the film in the air saying "Look there it is! That's your Sentinel Node!" He was so excited that he made me excited too! LOL

The blue dye goes in after you are under the anaesthesia. Don't panic if you have blue pee when you wake up, it is just the dye leaving you via the kidneys.

Even though I was fortunate to get a clear Pathology after my Mx, I don't for one moment regret having that SNB done.

You two will do fine, be kind to yourselves, and come back here often to let us know how you're doing!

GreenCowGirl and Kathi ~

I found the post-op period  less stressfull than pre-op. Once the surgery was done and I was in the Recovery Room I felt so relieved (well, yes, the  morphine helped). My nodes were negative and my recovery nurse told me later that I was soooo happy. I went into surgery with DCIS and woke up cancer free.

 Please let us know the exact time your surgeries are scheduled on the 28th and what time zone you are in so we can send you positive energy and prayers.  I had a choir of friends and family doing the same for me, and  had a speedy recovery - was in a low impact aerobics class 3 weeks post-op! Keep a positive attitude, rest and eat healthy - and let us know how you are doing.

 We will be thinking of you, praying and sending healing energy for a good recovery.,

~ Michelle

Shellshine, my surgery is scheduled for 2pm Florida time, but you know how those afternoon cases can get bumped all around.  I need all the positive, healing energy all of you can send my way.  Thanks! 

Kathi, I was on a sliding bed type thing that moved forward into a big circular xray machine. It wasn't a MRI. No possibility of feeling claustrophobic. Each time the machine would scan for about 15/ 20mins, then when the node didn't show I would go into a room at the side and massage my breast for about half an hour to get the tracer to go through then back into the machine for another scan. I think that I did that 3 times till the node decided to show up. It was a slow process for me, but I was told some people get it with the first scan.

Sorry Greencowgirl, I don't know about medication, so can't advise. I stay well clear of any kind of meds if I can because I seem to always have bad reactions.

I had awful technicolor cartoon dreams after my anaesthetic, so I jut got up and walked around the wards, had a cup of tea with the night staff and tried to deep breathe it out.

As to the question about whether there are any risks in having the SNB. I believe there is a slight chance of LE when any number of nodes are removed. My underarm was sore, and numb, yes both at the same time, weird, for a few weeks.

For me, I don't regret having this procedure done because if there was any change in the pathology after the surgery I would hate to have to have a clearance because we'd missed the opportunity during the Mx to test the SN.

I am with Shellshine! I'll check the time difference, I am in Australia, and I'll be thinking of you even if I have to set an alarm to do it! 

I wish you both all the very best for a swift and pain free prodedure...take care and let us know how you are doing. 

GreenCowgirl, good luck with your node mapping and let me know about that whole thing since mine is Thursday morning before my surgery.  Sleep well tonight.

Steelshine...waiting it out until Thursday.

Kathi

I have both of you on my radar for prayer and healing thoughts - already starting today. 

My node mapping went really fast - radiologist made a tiny poke wih a super small needle - felt a slight sting, and 20 minutes later two bright nodes lit up. My radiology tech had a warming pad on the area. I don't recall any feeling of claustrophobia at all. Thirty minutes later my breast surgeon and plastic surgeon were drawing pretty pictures on my chest while I sat at the edge of the bed, then the Nurse Anesthetist gave me the most wonderful relaxing IV medication, and the next thing i knew - I woke up in the recovery room, no pain due to generous morphine from my RR nurse, and absolute RELIEF that it was over!!! I honestly was sooooo happy. My family and nurses all remarked at how grateful I was to be on the other side of surgery. 

Don't worry about how you will look - it gets better every week - I am a month post-op and very pleased with the healing and progression.

You both are in our thoughts - you will do great! Please post as soon as you are able.

 💝