May 2013 surgeries

so glad to hear things went well for you Chin! I just found out my second surgery will be June 7th. They had me down for DIEP after the prof. BMX which I questioned because w had discussec doing TEs unless I need rads. Waiting on a call back from PS so that we can all be on the same page.

Surgey rescheduled from the 28th to the 31st. in a way feel better with the new date as surgery is not being done the day after a holiday, wouldnt be good if my medical personnel were hung over LOL, (besides now I can enjoy one on Memorial Day too).

From what Im being told my surgery wont be until mid afternoon, sure wish it was in the morning seems a bit odd considering the length of the surgery

Chinneymae - Yes, the shower helps a lot and the drains are a pain. Do you have someone to shower with you and wash your hair? My husband was awesome for doing that with me, he even blowed it dry the first few days.

Maine - Good luck to you!

I still have some tighness from my chest muscles getting used to the implants, but it gets better everyday. At least, I can lay on my side, sometimes. I still have an area of swelling that will just not go away under the arm from which they took the lymph nodes. I have an appt with my PS tomorrow and am hoping she will have good things to say.

Lisa,

I just finished chemo last week, and will be having surgery next week.  It wasn't as bad as I thought it would be. They've come a long way with taking care of nausea.  The worst part was feeling just generally yukky for a few days, starting to feel better, then getting chemo again and feeling yukky.  Oh, and the steroids keeping me up most of the night for a few days.  If you have any specific concerns, I'd be happy to try to answer them.

Hi Lisa - I am so sorry to hear about the news you got. It happened for me the same way and I am 100% in your court. All my pre-op tests showed no node involvement and I was told my BS would take the about 3 or 4 nodes after injecting the dye and if those were clear then I would not require any follow up treatment and could go on with my life. When I was awake enough after bi-lateral mastecomy, my husband's voice told me all I needed to hear. Luckily, it was only the sentinal node, they took an additional 3 nodes just to be sure, but it would mean chemo. My best freind and my oldest daughter were there when the BS had come out and gave my husband the news and my friend said, she could just see my daughter's face fall, "Mom is going to be so disapopointed." Boy, was she right. I could handle the surgery, I could handle the recovery (always wanted breast reduction), but my heart sank when I found out about chemo. I am so afraid of this unknown, all the talk of not sleeping, losing all my hair, not knowing how it is all going to be in the end. I have tremndous faith that the Lord is with me every step of the way and that is propelling me forward. I am an accountant and a planner, so my comfort comes in the details. I am trying to be in control of the details, but I am still scared.

Suzan

Suzan,

Let me give you some positives with the hair.  Showering literally takes 5 minutes (I still shampoo and condition my stubble, but the conditioner no longer has to sit in my hair for 10 minutes while I shave), no shaving, no blow dryer.  I went away last weekend and I can't tell you how freeing it was to pack.  I decided I could use the hotel's shampoo, so no shampoo, no conditioner, no hairbrushes, no gel, no hairspray, no blow dryer, etc.  You can get up, throw on a wig, hat or scarf, and be ready to go in 5 minutes.  yes, it's a chang, I had hair just below my shoulders, full of curls.  Now I have 1/4" stubble, but it will come back.  And anything you can do to prevent a recurrance is worth it to me.

Hopefully you have an oncologist who is as great as mine.  My first appointment she told me if I had any nausea, that she wasn't doing her job.    I've had a few side effects, but like I said earlier, it was much easier than I had prepared myself for.  Some tingling in fingers and toes, tired, hair loss, some days having trouble sleeping.  

The night of chemo, as time went on, it becomes harder and harder to get to sleep.  I've never been one to fall asleep easily anyway.  My oncologist told me to take ativan (which was my 3rd nausea drug) to try and sleep.  Two of those helped most nights.  Nap when you can, go to sleep when you are tired.  

You are in my prayers.

Thank you for the list of positives. That is what I try to focus on. Each morning when I dry my long red hair, it feels heavier and heavier and as our temps are now going to be 100 degrees or higher until Halloween, I know it will be a relief not sweat through all of it. I believe there is always a silver lining and that is where I set up shop!

Hello all, I am actually due to have my surgery next month. I had a question - does the Dr/hospital provide any post-mastectomy garments for you or do you need to buy all of that before? I am at a loss, my insurance says they will cover some bras/prosthetics, etc. but cannot figure out how that happens. The insurance says that my Dr. or surgeon is supposed to handle that. If so, what do I need to request? Thanks ladies.

Heather, I think you have to wait for the prescription for the post mastectomy bras, etc.  You would get that after surgery.  I bought a zip up the front camisole with pockets for the drains, and just some tank tops with spandex that I can easily slip up from my feet.  I would call the surgeon's office or if there's a nurse navigator at your hospital and ask.  Each hospital might do it differently.  

And for those of you near a Nordstroms, did you know that they have mastectomy specialists on staff to help you navigate through all the options with bras, camisoles, prothesis?  If you go to their website, you can get info on it.  I stopped in one day and met with a specialist and we talked about the different options after surgery.  I waited on purchasing anything other than the camisole with pockets for drains, but it gave me more info.  They will even sew a mastectomy "pocket" in a non-mastectomy bathing suit or whatever you want to purchase that needs one.

My hospital supplied me with a vest made especially for drainage tubes. It zipped up the front and has pockets on the inside to hold the tube bulbs. There is velcro to hold two pockets for tubes on each side. Ugh! Hated the tubes but the vest was perfect.



I found the softest and most comfortable Camis made by Jockey. They felt wonderful against my sensitive skin. They have them at JCPenneys and also on the Internet. They are advertised as the most comfortable Camis ever. I also found a great robe that has some gathers all around (kind of a baby doll look) which worked out great. I wore the cami under the vest for comfort and the extra fullness in the robe was perfect for the tubes. It's quite an adjustment but it worked. There were many, many days I stayed in my robe all day. I got dressed just to go to the PS.



Be comfortable. I could not shower with the tubes so sponge baths worked well. My husband washed my hair but I also went to the salon for a quick shampoo and massage which always felt wonderful. Be good to yourself. It is quite a challenge, quite a journey.

Thank you to all these answers, I am sorry if my question seemed kind of silly, but I am just trying to navigate everything and plan ahead. Thanks again!

Hi everyone,

I had my BMX last Friday 5/10.  All went according to plan and I am awaiting the pathology report some time today.  While I have been in pain and discomfort, it has been manageable and my husband has been setting his alarm to give me meds in the middle of the night.  I'm not sure who mentioned the burning but I do feel burning under my breast where the compression bra is.  The electric recliner has been a lifesaver as have all our friend's assistance with meanls and childcare.  Our 6 year old had a rough day on Monday and wanted to stay home with me which we allowed but she was pretty cranky and getting her back to her routine has helped.  It is funny how such small things can tire you out.  After dinner last night, we went to the local frozen yogurt shop as they were having a fund raiser for our daughter's school.  I can never pass up Menchie's so I went byt got pretty exhausted from the 20 minute excursion.  

I have my first pro-op tomorrow and then a visit to the oncologist Friday.  

My mother in law came over and washed my hair yesterday but otherwise I've been doing sponge baths.  Lots of people magazines and Downton Abbey.  Beware of comedies!  We watched a comedy and it hurt way too much when I laughed.

Lisa and Suzan - sorry about your news.  I'm sure it was very disappointing to know there was more there.  Good luck getting though it as easily as possible.

All my best.

Barb

Suzan,  I live in phoenix....near Desert Ridge. Are you familiar with that area? It's 101 and Tatum. 

Barb... I was relieved to hear you also are experiencing burning below the compression bra....I'm sorry You are having it but relieved that I'm not the only one.  The 2 drains I have left are staying in until Monday... I had a feeling they would as the output is still above what they are looking for.  

I have my appointment with an Oncologist tomorrow so I will let all of you know how it goes.

Lisa

I had my appointments with my MO and a genetic counselor today.  Such great news!  I thought that a minor blood clotting disorder would keep me from taking Tamoxifen, so I was opting for ovary removal, but that has changed.  I get to keep my ovaries!  I'm only 43 and way premenopausal, so this is very good news.  One less surgery and no immediate menopause!  The "team" thinks that nodal involvement is unlikely, so I won't know about chemo or rads until after the BMX on the 24th, but I'm prepared for whatever comes.  I'm on top of the world today!

Hi everyone,

found out yesterday I will be joining you in the May group.  BMX with SND on May 28th.  

I had a reoccurance of mucinous carcinoma in my right breast, the left is a prophylactic mastectomy, i am looking forward to being flat (a DD now) and not wearing bras again.

i am so worried about the drains.  Not looking forward to weeks of immobility.