September 2012 Surgery

Leah_S

Sept is approaching, Sept is approaching....

OK, so I had a unimx and I've also been part of the Aug surgery thread (original date was Aug 22) and I've written a list from my experience and the experiences of others of what to pack for the hospital:

toothpaste, toothbrush, baby wipes, hairbrush, underwear, shower sponge, phone and charger, books/magazines, robe, slippers, reading glasses, prayerbook, Book of Psalms, acidophilus, tissues, lip balm, pillow for the car (for under the seatbelt going home), face soap and face cream, socks, pen and paper.

If anyone has other ideas, let us know. I know some people have said they brought all kinds of stuff & didn't use it but I figure I'd prefer to bring stuff & not use it rather than need something I don't have.

I'm not bringing a nightgown - I'd rather use the one they give me instead of bringing home another thing to be washed.

I'm going to compile my "get it ready at home" list soon so I'll post that, too.

Leah

mrskimber47

Thank you Leah, 

Gonna do a post it note on my desktop with your list! Thank you for making my list for me! 

Dakota212

Mrskimber-

Why watch anything. I probably said this before but it's worth mentioning again... My sister had mastectomy and said if she had to do it knowing what she knows now she would do both. Incidently she is close to where u live ... Where e u being treated. She was at umass Worcester

mrskimber47

Dakota-

I'm at Dana Farber in Milford... so far they are slower than snake sh#t but at least I have something going on. Somebody else mentioned sympathy pain from the other boob. That made me laugh. I just reread my mammo result and it does note a nodularity in the tissue. WTH does that mean?  

Jennt28

Here's the updated list. I will try and get it near the top of each page...



20 Aug 2012

Sandlake - hysterectomy



5 Sept 2012

Leah_S - MX on remaining side plus bilateral TE placement



7 Sept 2012

KnBsAngel - MX with TE

marianelizabeth - lumpectomy, SNB



10 Sept 2012

Sandlake - bilateral MX with TEs



11 Sept 2012

SweetCaroline2 - MX, Lat Dorsi with TE

Tzvia - MX with TE



13 Sept 2012

cthynsh - lumpectomy, SNB



19 Sept 2012

michellej1980 - bilateral MX, DIEP



20 Sept 2012

mrskimber47 - MX, unilateral TRAM



28 Sept 2012

Jennt28 - bilateral MX, muscle sparing free TRAM

Dakota212 - bilateral MX with TEs



unknown date

cathyann (MX)

Bargala (bilateral MX with TEs)

marianelizabeth

Trinity0723, not true about most lumpectomies needing mastectomies within a year though often (25% is the number I was given) a second surgery is required for clear margins. I just read the section in "Dr. Susan Love's Breast Book" online and the survival rate is the same for both. However, it depends on each individual's diagnosis what makes the most sense. She says that for some women they just feel better having the breast gone. For me, as above, the location of the lump and my breast and I guess my physical characteristics, it would be much more deforming for me to have a mastectomy than most. BTW, I highly recoomend this book for anyone if you do not already have it. She rewrites it every 5 years and the latest edition is 2010 and it is the 5th one. Her online site is good too.  Marian

Dakota212

Mrskimber-

Sympathy pain really??? I was born at Milford hospital. I am going to Dana Faber in Boston, but if I need chemo or radiation I will do it there. I don't know what that nodularity means but I am sure someone will weigh in!!!!

Sneakychiquita

Hi ladies,

 Another one to add to the list for September surgeries.  Multifocal IDC diagnosed in left breast on July 22nd.  I'm considered Stage 1 at this point (both tumors are only about 1cm and it appears to not be very aggressive).  I'm bucking the trend and opting for skin-sparing UMX with TE reconstruction.  I fully understand wanting to eliminate risk and getting a better chance at symmetry with reconstruction by going ahead with BMX, but at this point I've no reason to believe that I'm at heightened risk of developing cancer in the opposite breast and I prefer the idea of keeping sensation (the good kind, that is) on at least half my chest.  I guess my tune may change after the nodes are biopsied, but for now I'm at peace with my decision.

Marian - You beat me to surgery in Vancouver!  In all fairness, I believe my biggest delay was getting the plastic surgeon on board with immediate reconstruction.  If my GS had her way, I would have been under the knife at the start of August.  Glad to hear a lumpectomy could do the trick for you... with my small breasts, a lumpectomy would leave me with only half a boob. Mind if I ask who your surgeon is?  Mine is McKevitt.

Best of luck, everyone!

Stacey 

kittykoma05

Hi,

My name is Laura.  I just got the call with my surgery date, Sep 14 at 1:30 pm.  I can't believe I'm having the surgery so soon.  I am sooo scared.  I am haveing a BMX with Tissue Expanders and Sentinel Node Biopsy.  If you are having this surgery, have you been told how long the surgery will be.  I was told that the BMX is 1.5 hours and the TE is 2 hours.  Does that sound right?  I have DCIS on the left breast and suspicoius looking cells (from MRI images) on the right breast, so I decided to do the ouble mastectomy.

I feel like I have so much to do before the surgery.  Are any of you renting a hospital bed for your recovery?  I asked my doctor and she said I wouldn't need one.

Thanks,

Laura

Dakota212

Kitty-

I am also having bmx, I haven't heard a hospital bed would be necessary. I am jealous my surgery isn't until the 28. I have had to wait 7 weeks!!!

Dakota212

Kitty-

Sorry U have to be here but welcome

Trinity0723

Dakota - I waited all August only to have it rescheduled :-/ and now I'm waiting in a release from my neurologist. Going to get reports this afternoon. If they reschedule again I might shoot someone.



To bring all up to speed on me: I had grandmal seizure in July. Then insurance cancelled in August, back on sept 1st. Have to redo BRCA testing and won't have in time for surgery. I think that's it :-/

Dakota212

Trinity-

I definatley think it would hold up in a court of law IF u had to shoot someone. Everything I can cross for u will be!! Good luck this afternoon. Keep us posted

positivenergy

I'm in!  I am now scheduled for a Double MX w/Diep Flap reconstruction at Beth Israel in Boston, MA  Anyone else experienced surgery at that location, or going to be there?  I'm very nervous and at work right now, so I will check in later and write some more. 

Jennt28

20 Aug 2012

Sandlake - hysterectomy



4 Sept 2012

Trinity0723 - MX (left)



5 Sept 2012

Leah_S - MX on remaining side plus bilateral TE placement



7 Sept 2012

KnBsAngel - MX with TE

marianelizabeth - lumpectomy, SNB



10 Sept 2012

Sandlake - bilateral MX with TEs



11 Sept 2012

SweetCaroline2 - MX, Lat Dorsi with TE

Tzvia - MX with TE



13 Sept 2012

cthynsh - lumpectomy, SNB



14 Sept 2012

kittykoma05 - bilateral MX with TEs



19 Sept 2012

michellej1980 - bilateral MX, DIEP



20 Sept 2012

mrskimber47 - MX, unilateral TRAM



24 Sept 2012

Sneakychiquita - skin-sparing UMX with TE reconstruction



28 Sept 2012

Jennt28 - bilateral MX, muscle sparing free TRAM

Dakota212 - bilateral MX with TEs



unknown date

cathyann - MX

Bargala - bilateral MX with TEs

positivenergy - bilateral MX with DIEP

Sneakychiquita

Oops, forgot to provide my surgery date.  I'm scheduled for Sept 24th. 

michellej1980

I don't know about the rest of you but I just want to get this over with now. I needed some time to get used to the idea but I am fed up with thinkIng about it and worrying about how I will feel after the surgery.



I've noticed that most people, if not all, have their SNB at the same time as lumpectomy or mastectomy whereas I had mine about three weeks ago and am not scheduled for BMX for another three weeks. Any ideas why? It makes sense to me to do it at the same time a) so I only have one surgery and b) so the tumour doesn't have time to spread to my nodes after they've got the all clear.

Dakota212

Michelle -

I wish they did mine three weeks ago. I got my surgery date on August 10. I would rather know about to lymphnodes now rather than have to wait until sept 28 for everything. Just me tho ?

Dakota212

Positive-



I will be at the faulkner on the 28. Still Boston ... Lol

marianelizabeth

Sadly the list certainly seems to be growing but nice to be able to be sharing here.

Sneakychiquita, my surgeon is Dr. Carol Dingee and the surgery will be at Mt. St. Joseph with the nuclear med injection for the SNB done in the early AM at St. Pauls's. Where is your surgery being done? I don't know anything about the stage but from my path report from the biospy I am grade 2 at this point with no vascular/lymphatic invasion. In your case is the mastectomy being done because it is multifocal and there appear to be two 1 cm tumours? How did you find yours? With my very small boobs I think this will be pretty deforming but if you read (never sure which forum I posted on) my earlier post, my surgeon says that due to the location of my tumour, a mastectomy would be almost a radical and that is a scary thought! I would way rather have been under the knife long ago but try to stay rational and not thinking the tumour is growing. The other option was waiting around for an unlikely cancellation which I have not done - I am on a planned holiday. My surgeon did try her colleagues but same scenario of OR slates full or on holidays too. 

Michellj19, I would not have minded have the SNB done long ago too as at least that would be off my mind or at least I would know. So Dakota212, I am with you, would be nice to know. I think sometimes I read too much as all the discussion about LE is scary and if I have to have a full axillary node dissection, well that changes everything! But hey, it is what it is! 

juliaanna

Kitty and Dakota,

I had a BMX/TE on 6-1-2012.  I didn't find these discussion boards until July so I didn't have the opportunity to benefit from the support and information the women here have to offer before surgery.  Since then I have been reading many threads, learning a lot and posting very little.  I came across your questions about a hospital bed.  I would like to share my experience in hopes it will help you as you anticipate surgery and afterwards.

Getting out of bed was probably the hardest thing for me to do after surgery.  You can't use your arms to push yourself into an upright position.  The most comfortable position for me was semi-reclined on a number of pillows, with a pillow under my knees to keep me from sliding down.  I have decent abs but was not able to sit up without help for about 2 1/2 weeks.  To get out of bed, my DH would take the pillow out from under my knees, slide his arm under my shoulder blades and lift me into a sitting position.  From there, I could swing my feet over the side of the bed and get up on my own.  Having a hospital bed would allow you to get out of bed on your own as it can be raised high enough that you are almost sitting upright.  The foot of the bed will raise and lower so you can do without the pillow under the knees.  You wouldn't need as many pillows behind your shoulders and head.  They tend to slide around and you will need someone to help you re-arrange them.

I have a recliner with an electric control button on the side.  I spent a lot of time in it, too, after surgery.  The bed gets old after awhile.  The button is close enough to the top of the arm of the chair that I could reach it without stretching too much. You get to spend your first part of recovery with your arms close to your sides, especially while the drains are in. (Think of a T-rex).  The only down-side to this recliner is the button is at just at the place where my dog would rub against it when she came to be petted.  She sent me on a few "rides" until I put a table next to that side of the chair.

This is a great place to find support and information.

Peace be with you all. 

ndroby

TAH September 4th

still have tissue expanders from 4/10/12 bilateral mastectomies

I am curious about what surgery is worse?

positivenergy

Hello fellow Septembers!  I am scheduled for a Double MX w/immediate DIEP Reconstruction at Beth Isreal on 9/17.  Feeling like it's a long way away, but the first week of waiting went pretty fast and the advise to get myself healthy and prepare for what's to come has been great for the mind.  Did my workout this am, gonna write a list of things I need to pick up.  Here's to WAITING! Not.

Leah_S

Trinity, I also went through a lot of nonsense before my surgery was scheduled, so if it's changed again I'll be the one handing you the pistol.

Leah

LeahLeah

I guess I belong here, if you have room for one more?

I'm scheduled for Lumpectomy, Intramammary Node Removal and Sentinal Node Biopsy on 9/12.  Possibly more/other, not sure yet,  also don't have a good diagnosis due to the malignancy just showing up in fna of intramammary node and not in mass core biopsy.  I noticed someone said they had Pure Mucinous Carcinoma, not sure if that is possible for me, I'm desperately trying not to google.   My BS is thinking possible Intramammary Node Cancer.  I will probably not know more until after the 12th, well, after the wait for pathology, after the wait for the 12th.....grrrrrr waiting!

Good luck everyone and Sandlake I hope you are feeling better each day since your hyst.  

Sorry we all had to meet like this, but sure am glad not be going it alone, if you know what I mean.

Jennt28

20 Aug 2012

Sandlake - hysterectomy



4 Sept 2012

Trinity0723 - MX (left)



5 Sept 2012

Leah_S - MX on remaining side plus bilateral TE placement



7 Sept 2012

KnBsAngel - MX with TE

marianelizabeth - lumpectomy, SNB



10 Sept 2012

Sandlake - bilateral MX with TEs



11 Sept 2012

SweetCaroline2 - MX, Lat Dorsi with TE

Tzvia - MX with TE



12 Sept 2012

leahlee - Lumpectomy, Intramammary Node Removal and Sentinal Node Biopsy



13 Sept 2012

cthynsh - lumpectomy, SNB



14 Sept 2012

kittykoma05 - bilateral MX with TEs



17 Sept 2012

positivenergy - bilateral MX with DIEP



19 Sept 2012

michellej1980 - bilateral MX, DIEP



20 Sept 2012

mrskimber47 - MX, unilateral TRAM



24 Sept 2012

Sneakychiquita - skin-sparing UMX with TE reconstruction



28 Sept 2012

Jennt28 - bilateral MX, muscle sparing free TRAM

Dakota212 - bilateral MX with TEs



unknown date

cathyann - MX

Bargala - bilateral MX with TEs

kittykoma05

Juliana- Thnk you so much for the info on the bed.  I think I'm going to rent one even if my doctor won't prescribe it so that my insurance pays for it.  I'm sure it'll be worth the money.

I'm sleepless tonight.  I hate cancer!!!!!!!!

juliaanna

Kitty,

I hear you-cancer sucks!  I missed a few nights of sleep both times I was waiting for surgery, too. There were thousands of things going through my head, very few which I had control over, but that didn't stop me from trying to control them.  Remember you are not going through this alone.  You have found a place where you will be supported through your fears, tears, rants and celebrations.

Peaceful dreams when sleep does come.

Julia 

Jennt28

kittykoma05 - sorry you are not sleeping well :-/ Sleep is a rare and beautiful commodity for so many of us going through this. I actually am sort of looking forward to the tiredness after surgery so I can do a lot of sleeping!



Got my second planning appt with my PS first thing tomorrow morning. The last appt was the intro and discussion about the options where I went in wanting "simple" implants and came out "shell shocked" after he told me that he did not think he could give me, with implants, the smaller size breasts I wanted since I have a wide chest and the wider the implant the bigger the implant in terms of projection you get. That's just the way the manufacturers make them.



So his suggestion was free TRAM (they don't do DIEP here in Australia much yet) and he sent me off knowing my surgery date but having to decide whether to go the implant or TRAM option. Since then I have spoken with a previous patient of his and my husband and I have received the quote for the surgery and had the serious discussion about whether we can find this money (about $14,000 out of pocket expenses here in Australia for going "private" instead of on the more than 2yr waiting list to get it done in the public fully funded health system).



I'm not sure what will happen in tomorrow's appt. Still a bit scared that something will go wrong and he or the BS will find some reason that it can't be done when I so desperately want to get these breasts gone asap (due to prior health history I found out AFTER my initial lumpectomy that I was at high risk of BC from the start).



Jenn

mrskimber47

So my dx is getting more complicated. I'm having an US tomorrow to determine if cancer is in my left breast too. I started with pain and now I have three areas of concern according to my onc. My surgery will be in Boston at Brigham and Womens w/in the next couple of weeks. I will have a new date so I will post it when I get it. Anyone else have bilateral IDC and how did they stage it?

Scared.