February 2012 MX

Moderators

susanes, as well as the personal experiences you'll read about here in the forums, there's a really useful section Mastectomy: What to Expect on the main Breastcancer.org site. Hope this helps!

Judith and the Mods

mary625

Susane--I had the BMX but no TEs so I can only answer from my own situation. I was able to get up at about 4 or 5 p.m after an 8 a.m. surgery. I walked and then they decided my urinary catheter could be removed. From them on, I was able to go to the bathroom on my own. I also went to the sink for brushing my teeth. The staff did not come to my bed and offer to bring a basin for brushing. I think this should be about the same with the TEs but I don't know for sure.

TJP1071

Headed in tomorrow for a BMX with a deip flap or is it diep?  Too much thinking right now.  I have a cold and a stuffy nose but am on the upswing of getting better.  Doc says that if there is no fever and no coughing in the chest we are a go!  At this point I just need to get it over with!  This site has been wonderful.  The tips and thoughts and prayers are neverending and I would not have goetten this far without all of your comments!  Thanks to you all!

Nel138281

Thanks to all for your postings.  I am getting ready for tomorrow.  Anxious but moving.  TJP071, we are sisters on the 16th.  I wish you well.  

I am curious about the emotional recovery from the surgey.  I am less worried about the actual surgery and more worried about looking at myself for the 1st, 2nd or 10th time.  Any words of wisdom?

Gentle day

Nel

Deborah2012

Hi ladies,

Yesterday, I went with a "navigator" (a BC survivor) who is part of a local hospital program to assistother BC patients.  Amazing. I knew the navigator personally but would urge people to call their local hospital anjd inquire if such a program is available.

She took me to a separate area in the hospital that had a library, table & chairs, DVDs, periodical literature etc. on breast cancer.  The back wall had rows of wigs displayed.  The file drawers were filled with various sized temporary packaged preformed pads to stuff inside a bra until TEs are ready for squishies. I'll bet they had more items but just weren't relevant to my situation (at least not yet!).  There was a private area with a mirror & vanity.  The area was staffed by a volunteer. The "navigator"  shows you the ropesis way ahead of where you are headed in your treatment and introduces you to the volunteer.  I couldn't believe it! The navigators are phenomenal! They practically adopt you. Talk about a resource for real life next steps. 

Well wishes for good surgical experiences are being sent to Nel (founder of this thread- THANK YOU, Nel xoxo! (MX)), jocelynlally (BMX), wrsmith2x

 Deborah2012

mary625

Re: looking at yourself for the first time, the surgeon had my sister and husband look when she unveiled me the following day. Knowing that they did not freak out (my sister is a doctor, BTW) helped. The doctor commented on some bruising on one side, so I was expecting that. I then took my first shower without my contacts in so I did not have to see much in the mirror. In other words, it was helpful to me to have their comments first to know what to expect when I looked and then to take things gradually and look when I was ready.

Deborah2012

My apologies to TJP071 regarding your surgery tomorrow.  Sometimes, I lose track of all of us that keep adding onto this thread & their surgical dates.  Oops!

Still waiting to hear from:

Sadie524, Likeachickadee, elliegk, dragonfly, Galsal, winniethepooh, LynnBrooks1, Layla2525, Lydia1961.  For some, it would be premature for them to be posting so soon after their surgeries.   

Deborah2012

Layla2525

Hey everyone,thx for your good wishes and any prayers. I made it and everything is super except the pain level. Wanna hear something funny altho someone may have to go to time out for this...my fiance was bringing me back to my house and he reached in to help me out of the car and leaned against me and I nearly died,screaming with pain, so to make up for it he takes me inside and quickly tries to put the warming throw on me and hits me in the chest with plug in part.  Good grief!!! Is he trying to help or harm? Like a bull in a china shop. I called the PS and she says just put ice on it if it didnt cause any damage. They took 2 sent nodes,both negative,yay!!! bmx,idc on right side. TE. Got Valium for depression,Tyl with Codeine and an antibiotic and 2 surg bras and non skid footies from the hosp. Still waiting for final path report from surg tissues etc.I am now only taking pain pills every 5 hrs. The excrutiating part is wearing off and I am going into the phase where you feel sore like you worked out too long at the gym. Hugs to all,speedy recovery and to all awaiting....just be sure they keep you well=medicated with pain pills. Yep ordered camis on internet mary 625. thx Deborah2012. Farmerlucy and all I am getting phantom sensations like I still have a nipple...weird. Do other ladies get that? Might be nice if we get to keep it that way for future "life".

Dixiemine30

2 weeks post op tomorrow.  3 drains removed today...I feel like a new woman!! 

Good luck to all the ladies tomorrow.....the time between now and your surgery really is the worst part :-(

crazypenguinsfan

Hello February mx ladies, I am joining you. My left side UMX surgery is scheduled for next Friday Feb 24th. Sort of scared about SNB, the mapping of it and all, the pain afterwards especially since I am a lefty and play tennis and hockey. I think if I didn't have to have that I wouldn't be as freaked. There is always something to make me worry about! Oh well, I can't get out of it as much as I have tried to figure a way to make all this go away

Dixiemine30

Welcome crazypenguinsfan...I'm so sorry you're here but glad you found us.  This forum literally saved me from feeling alone even though I am surrounded by family and friends.  My BMX was Feb 2nd and I waiting was the worst part for me.

Katiep1388

Hey ladies my BMX is next week and ive been reading thenposts and im scared too, being 23 too doesnt help, i feel like none of my friends really get whats about to happen to me.. And its frustrating.



Farmerlucy- about the areola sparing youd probably have to advocate for it, and explain the difference because many dr.s write it off as the same as nipple sparing even though its not. If i werent in my 20s i may not care as much to be honest but the safest most natural looking result matters to me because i do have to date and its slightly horrifying.. Especially with my post chemo head fuzz hahahaha



One thing ive seen everyone show concern about is the SNB and i didnalready have that with my lumpectomy so i can shed some light on that. I thought the mapping process was so cool... The imaging to follow it.. I was pretty impresed. The injection is not fun but just take deep breaths and itsover fast. Id compair it to a numbing shot.. Like at the dentist. As for the after math yo u do want to hold your arm in a sling position at first because i think they stretch your muscles to get to them, but they arent as sore as they are annoying, and it does get better! I hope this helps...



I found out today radiation will likely be in my future which kinda worries me.. Anyone in thensame boat?

joannweb

Hi All,

 Add me in! Feb 27th. I am meeting with PS this friday. I am planning on BMX with reconstruction with silicone implants. Being treated at Mass General. A little nervous of losing breast and sensation. Also, still grieving the lost of my husband in dec after a 6 month battle of bile duct cancer. Need lots of prayers for successful surgery and no cancer spread. This has been very tough on me and my three college age kids. Joann

Deborah2012

Welcome back Layla2525!

Yes.  I get occasional "zings" across the center of my MX site.  I have a diagonal scar and the zaps are not along my scar path. I had the nipple removed.  I was told it had to do with nerves being severed during surgery?  It doesn't really last long enough to register "pain" it just stuns ya briefly with surprise, intensity, and brevity. 

Ok ladies- I see my onc tomorrow.  It just dawned on me. I had ER+ in my IDC and ER- in my DCIS.  Soooo does that mean I may not escape with just hormonal therapy? i.e. chemo for the ER- characteristic?  Breastcancer.org has terrific information on the website on hormonal therapy.Super timely for my appt. tomorrow.  Thank you Breastcancer.org!  

Huge breakthrough today for me.  I was able to wash my own hair in the kitchen sink.  I still can't shower.  I take a bath daily in water up to my hips, sponge bathe torso and above.  I still have one drain.  2-3-12 was MX. Yes.  I'm the weird one that has full range of rt. arm and no arm soreness for some inexplicable reason.  Perhaps all that regular kayaking helped?  I even was able to remove a top over my head with both arms.  It's really bizarre how everyone heals so very differently.  Alicethecat's recovery was like some bionic breakthrough! Go Alicethecat!

Good luck tomorrow to all of our scheduled Feb. surgery ladies.

Deborah2012

farmerlucy

KP (I call my 21 yr old KB, so you are now an honorary daughter) I called my BS today re: areola sparing, and he said they were not that common, he doesn't do them but would talk to PS about it. May not be something that happens in my case, but definitely an exciting option so perhaps it might pave the way for other women. Sorry about the radiation



Glad to hear everyone is improving. I agree these boards are a life saver. I've been getting through my "to do" list,but still have these crazy emotional breakdowns. No lifting for six weeks sounds impossible.



I'm coming home w pain pump. I hope it works. Generally I have pretty high pain tolerance, but I've never been through anything like this. Anyone else have exp with pain pump?



A week from today i'll be home. Yay!



Deb - Thanks so much for keeping track of everyone.

crazypenguinsfan

KP thnaks for the info on the SNB, I guess I will try to focus on the cool science of it all

Joannweb I am getting mine at Mass General, too, but I hopefully won't still be there when you check in althouigh it is pretty cool that you are going to be there too!

I am addicted to the boards, so helpful and sort of like a party!

Steph

Katiep1388

Lol myfriends call me KP all the time



Farmerlucy- very cool.. And you never know, the PS plays a big rollin the advocacy for it so it may work for you! Its kindof a really cool option. Radiation sucks but my PS says it could benefit my assymetry by tightening up my larger side, hes really experienced with rads /recon so i feel ok if thats mypath. Im going to get an immediate implant on that side so atleast i wont have to wait months for a squishy my "littler lady" (prophylactic smaller side) will get a TE and finally grow to be even! Im trying to focus on this aspect of surgery because ive always had a large C cup and a large A cup... So ill finally have symmetry! Even if its not 100% ill be better then i am now





Definitely tRy and focus on the science during the injection, ask them if they can to show you the images they take as they map.





One question for everyone, are all of you having (if applicable) your lumpectomy scar excised?

susanes

FarmerLucy, I'm getting a pain pump, too, but have no idea if it really works. Sure hope so! I hope you feel like posting after your surgery to let us know. Good thoughts going your way:)

farmerlucy

Thanks Susanes! I was just thinking I should have DH take the iPad away from me! Who knows what I'll be posting while taking all those meds My PS said I should take a trial Oxycodone to see if I have any nausea. No nausea, but felt totally drunk. Eek. My PS gave me new drug to take preop for anesthsia nausea. It is called Emends $53 for one! Should last for 48 hours. I generally don't get nausea but I'm not taking a chance.

DebbieOS

Hi Everyone!

Thought I'd join in with a date...my Unilateral mx is on Thursday, Feb 23rd....really starting to freak out about the whole thing....I'm getting a TE, but somewhat planning on a DIEP eventually...not sure...in fact, I realize that I still know sooooo little about all of the ramifications of all of the options.  I look online at some of the reconstructions and they look terrible.  I wish there was a course that went over EVERYTHING in detail, giving different opinions from different plastic surgeons, with research included......

mary625

KP--I will be going through radiation. I hope you don't have to, but if you do, join me in the radiation forum. I'm just waiting on my start date, but it will probably be in March. I am seeing the RO today.



Regarding Emend for nausea, that is one of the best drugs they have for it. I got it in my pre-meds for my 1st 4 A/C chemos, but I could never get a prescription to use it at home. I had Zolfran during my surgery and did fine.

Tangela

Having Surgery tomorrow Morning Feb 17...  Have triple negative and will be having Left total  masectomy..  haven't had any Chemo yet but was told I will probably nhave treatments after surgery...

DebbieOS

Good luck there, Tangela...mine's on my left breast also

Dixiemine30

Good Luck tomorrow Tangela....we will all be sending prayers and positive energy your way!! 

Debbie -- Waiting really is the hardest part.  I am 2 weeks out today!!  I thought I might lose my mind the week before my surgery....I was so freaked out!!

KP - Love & hugs to you sweetie!!  

Alicethecat

Hi Nel

Emotionally, I felt fantastic after my MX.

I'd done all my worrying beforehand and when I woke up I thought, 'Wow! I've survived and the docs may have taken all the cancer out.'

Back home, I was washing, dressing, eating meals and even had the girls round on the day I came out of hospital. No drains, no pain, just proud that I had got through it.

Hopefully, all will go well for you too.

Best wishes

Alice the Cat

Deborah2012

Hello my Feb. MX and BMXers! 

Good luck to Tangela tomorrow- minimal discomfort and pain are what we're all rooting for for you!  I hope Nel (who began this thread), jocelynlally (BMX), wrsmith2x,TJP071 had successful surgeries today and good recoveries.

Okay, here we go... I had two doctor appts. today. My onc and an unplanned appt. with my PS regarding my TE.

Onc:

I will NOT be having any chemo nor rads!!!! Yipee!!! Howz that for a winning scratch off ticket????

I am a Stage 1a my final tumor size was 7mm and zero lymph involvement. I'll send a second post after this for my sciency sisters (like me) who find that part fascinating.  I am fortunate.  I will be getting the oncotype DX genomic assay on my tumor that they excised (they don't discard that for awhile).  It will determine with greater specificity how receptive my cancer is to ER and PR hormone blockers (in my case the enzyme type) and will also determine if I would even benefit from chemo had it been suggested.

Second appt. with PS: Episode #1 in the TE series: "The falsie pulls a false alarm":

For the first time last night I found a tiny bit of blood on my TE (specifically it looked like a 1/4" razor cut along the border of the surgical tape covering my MX diagonal scar). No pain and with my kabuki ritual of antiseptic there was no evidence of infection.  I wondered if it was coming apart- as in the skin might split open?  I called my navigator.  She acutally had TE probs andher problem had started with a skin opening in that fashion.  She hadn't volunteered thatinfo to me previously.I had to directly ask her details that I had not previously asked. I just knew I had barought this on myself because I had washed my hair in the sink with arms over my head, had taken off a top over my head like I used to pre MX, and went on a rather long walk that day. All without any pain or feeling that anything had 'popped". My PS said to come on in.

Result: some old blood had seeped from under the surgical tape a few times.So my PS takes my tape off.  Yikes! First time I saw that scar!  I have one earthworm in the making- (nice-so sexy).  Then, he cleans it all up and puts GLUE all over it and the perimeter and covers it with a new strip of surgical tape!  I has been confirmed.  At 55, I am literally being held together with glue, spit, and a little dirt! All is well, and I can proceed to be "naughty" with my arms as long as Iam not in any pain or soreness.  Go figure!  BTW, PS said he was really glad I came in.  He also wants me to continue taking antibiotic pills for as long as my drain is in.

Happy Deborah2012

Deborah2012

To the Sciency February Sisters,

I asked my onc about ER- in DCIS and ER+ in IDC and how that would impact any hormonal therapy.  She said they go with the tumor not the DCIS. PR was present in both my IDC and DCIS. We spoke about the difference between MammaPrint and oncotype DX (21 genes).  If the oncotype DX came back in the middle zone, then they'd order a Mammaprint (70 genes).  She explained that the Oncotype DX will aslo give me a ten-year predictor- not just the Mammaprint.

My tumor had been anywhere from 9mm, 1.3 cm to 7mm depending upon which modality was used to measure it.  Since the excision during the MX yielded a 7mm size, that is the final number.  It has to do with the limitations of the mammos, MRIs, and ultrasounds and extraneous tissue etc. that may appear to be part of the tumor but isn't.  This only has import in the final determination of what Stage of cancer one ends up with.   Less than 1cm and no lymph = Stage1a.

My onc is awesome! She is totally into the science not just the clinical side of her craft.  She goes to BC oncology seminars etc.  We actually talk about different authors we read regarding evolutionary cell biology.  Not that I understand it all- I don't. It's just fascinating. I love it that my Onc. stays current with the science of cancer, not just handles patient load with great bedside manner.

Deborah2012 

Galsal

Finally on the computer after the BMX done 2/10.  Came home 2/13. 

First of all, I want to say what a joy and pleasure it was to have met Special K!  She came to visit me in the hospital and it was a blessing.

Those "zings" or twinges you all spoke of drive me nuts at times.  I know it's from the muscles and nerves being cut but do they ever stop or at least slow down significantly?

Overal, I don't hurt too badly except when I wake up. 

One of the strangest things though is that I'm either allergic to Betadine or the tubing of the drains.  I've had a rash since before leaving the hospital that is at the neck/collarbone and across the shoulders and shoulder fronts, down the left arm to the wrist, across the torso that is worse near the tape over the drains themselves and in the upper abdomen.  I've washed the betadine but it still continues.  Note - the SNB was only done on the Left so I'm guessing that's why the Right hasn't reacted.  Prelim path report shows it was clear btw.

The only bad thing is that it took 1-1/2 days to get it throguh to them that Percoset make me sick.  Only when I did get physically ill did the Dr get reached to have it changed.  Within 12 hours, I felt LOTS better.  Would have been nice to know though that there was a med for nausea on order as prn.  One would think that if I consistently complained of feeling queasy or nauseaous, some one would have said something about it.  That, plus changing the pain med worked wonders.

The support received here has been spectacular.  Naturally, my journey is not yet done.  So, for now, until another day I leave you as again I try to get some more sleep.

Sally

susanes

Sally, I had that rash, too, after the biopsy surgery. It was so bad the BS prescribed a prednisolone pack to relieve it! I know I can't do that after a BMX, so sure do hope I can convince them to use some other substance on me during surgery.

I'm sorry you're having to deal with this, but I hope your recovery goes smoothly otherwise!

Galsal

Thanks Susanes.  Never had this reaction before but then again never had as much on me and for the longer period like this.  Guess that's what it took to react.  Will see the NP today for removing the drains and see what they think.  Sure won't want that again for Recon later on!