January 2013 surgery

Nat23

Hello ladies!

I'm so happy to see everyone doing so well. I've been trying to catch up on all the reads everyone is so encouraging and positive.

I see a lot of our surgeries were delayed. Mine was pushed back a couple hours too. I was sent back into a waiting room in my gown...lol. But in a waiting room I met a lady who was just diagnosed and was really scared. We started talking...I told her about my journey so far how I was dx, my chemo, hair loss and I told her about u guys. Basically wanted to comfort her. After my surgery, while I was doing my walks in the hall, I ran into a couple of different nurses that told me Sharon (lady I met) is saying hi and she is thankful she met me right before her BMX because I made her feel at ease. It was sooo nice to hear that I've made a difference for her. Going through this journey, I have gotten great advise but never felt like I was taken seriously. Although I'm 28 I look barely 20 so I got a lot of 'oh you're so young! You're gonna be fine. You're lucky to have this at a young age' like me being young makes it a different cancer.

Anyway...I just wanted to share my little hospital story. I felt so special

And thank u to all of u! U guys r my encouragement good luck to runner tomorrow 💜

CookieMonster

chelle21 - I remember it like it was yesterday. At 41 I was diagnosed with DCIS. Had a lumpectomy. Then at my 1 week post op appointment (it was midday on the first day of school and I'm a teacher) I got a brick dropped on me. Margins weren't clear enough and they'd found IDC. I went in expecting to find everything was good, go for radiation. That afternoon of classes were a mix of godsend and horrific. They gave me something to think about other than this mess, but it was rough to get through it.

I (after two more attempts at reexcision) ended up with a unilateral mastectomy, but no radiation, so it was a trade off.

I'm happy to talk more about my treatment path, feel free to PM me if you want to as well.

Hang in there and best to you.

Ariom

Hi laurie,Speedy and Chelle, So sorry that you have had to join us here, but so glad you found it just like the rest of us did. There are many wise women here to talk to. Don't be afraid to ask anything, there will always be someone with a similar experience to help out.

We all know how devastating the waiting is, but it really won't be too long till you are all on the other side of this journey with the rest of us giving a helping hand to the new ones coming along.

jojo2373

I have been reading all the updates - what a strong group of women!  I am supposed to get "the call" today on my path results.  Praying for good news as it seems for the last 6 months I have gotten very little.

BrandieMcAdams

Nat23- I'm glad you got to hear what a blessing you were to her. I'm 26, still undiagnosed.

Nat23

Brandie,

I hope u never get diagnosed! They didn't do needle biopsy? Going straight to lumpectomy?

JRMH

Laurie and chelle21- So sorry you have to join us but you are joining a great group of ladies. I have added your dates to the list.

Speedy4- I understand your frustration about waiting. I had chemo first, which ended Nov. 2. I was supposed to have surgery 1 month later and my surgery is not until next week. I was so frustrated while waiting for a date and then shocked that I had to wait so long, 1 and 1/2 months later than I was originally told.

knitlady- Such good news!

Runner1987- I like your example from the childhood story! I am continuing to think of you today!

Hopex3- Yes, we are warrior princesses!

peanutsgal

Hello to all our newcomers. I think you will find that these boards have so much to offer not only for support, but for information and you know what they say about information....information is power. I feel like I was so much more prepared for surgery and what to expect by reading these boards. That being said...an update on my progress. Surgery was Monday, saw PS today. He removed 2 of my 4 drains and said that he anticipates being able to remove the other 2 at my next follow-up on Tuesday. What was it like? Well,from what I understand, most surgeons do not numb the area before pulling drains, but thankfully mine did. My left side is more numb than my right side and all I felt on that side was a pulling sensation. The right side was a little more uncomfortable than the left, but not extremely painful. A few seconds and it was over. I also talked to him about the sensation of my muscles clamping down on the TEs and he said it was my pecs revolting and it was normal. Sometimes I feel them get so tight that I can feel it all the way to my shoulder blades, again, not painful, but uncomfortable. Most of the time I feel like I have a spanx camisole rolled up under my armpits and stretching across the front of my chest. I'm not saying this to frighten anyone, but I promised to be honest and in the end, I think if you know that these are normal sensations, you will be better equipped to handle them if they happen to you. Overall, I am very pleased with the outcome so far! I pray everyone is continuing to recover well with minimal discomfort.

suzilla

Hello to all!! Warm wishes and comforting thoughts to all of u!! For those that have undergone surgery....i wish u all a speedy and healthy recovery! Also, for all that have a surgery coming up....u will be in my prayers!



Well as it seems, the daybof surgery is coming just around the corner, and i find myself at times nervous and worried......ugh! Its a drag!! But that day will come! I have a few questions that i have thought of recently, and am hoping that whomever has gone thru a modified radical mastectomy and a SNB on the othet arm may be of some help? Will i be anle to move my arms at all? Will i be able to clean myself when i go to restroom? I dont have enough money for a camisole to put the drains in pockets....what can i do to make them tolerable?

JRMH

I have a question. After your surgery, are you able to eat "normal" foods right away?

peanutsgal

Jennifer,

My surgery was at 7:30 in the morning and they let me have liquids the day of surgery and regular diet the next day. I don't know if it is done this way with everyone or if they were just being extra cautious with me because I normally get very nauseated after any anesthesia. This time they used a scopolamine patch along with zofran during surgery and it worked like a charm!

Ariom

Hi Suzilla, just thought I would answer the what to do with the drains part of your question. I bought some wide ribbon and made a long loop that went around my neck. The drains had little plastic pegs on them, so I just pegged them to the fromt of me with a baggy shirt over them. When I left the Hospital I only had one drain, but it was a huge concertina type bulb. I simply put it in a cloth shopping bag that I wore as a shoulder bag. No problems at all. 

I don't know if it helps when I say, I had a right Mx and sentinel node biopsy. I had almost total arm movement, so no problem at the bathroom or anything else with that arm. Everyone is different, and I am sure someone that had the same surgery will come along and let you know of their experience. Try not to worry too much as the surgery approaches, easier said than done, I know, but it really isn't ever as bad as our poor tired scared brains try to trick us into believing. Take care and we will be here to welcome you over to this side of the experience soon.

Ariom

Hi JRMH, just had to tell you of my silly experience with food after my surgery. When I got back to my room in the late afternoon I was starving because I hadn't eaten since 7pm the previous night. I was begging for food, but my Nurse wouldn't give me anything but ice chips. I had a really rough throat from the breathing tube so they went looking for throat lozenges for me. I finally convinced them I wasn't going to throw up, so what did they give me? All they had was dry sandwiches. Not a good idea, I must have looked like a dog trying to throw up in reverse!LOL I found if I took a bit of ice in with the bite of sandwich I could get it down, but it wasn't a pretty sight!

cinnamonsmiles

I would suggest that anyone getting a BMX  with or without node removal, but especially with node removal, get measurements of your arms, fingers, hands. and chest underneathe the breasts . IF you should get lypmhedema after your surgery, it will make it so much easier to get diagnosed with LE. I just had a consult with an ill informed surgeon regarding LE, and believe that had I gotten presurgery measurements, it would have been easier to be diagnosed.

Nat23

Suzilla,

I had a modified MX on my right side, 12 nodes removed. So right arm I cannot move well yet. My left side I had a regular MX and was able to move that arm pretty quickly...So I use that arm to eat, drink, and clean myself I was worried about wiping too, I didn't want any help with that. It was pretty challenging at first but got better quickly.

As far as camisole...they gave me a bra in the hospital over my bandages that had little straps to hold my drains. They also have me two belts with pockets which is what I use mostly. I have extra if u would like me to mail it to u just PM me.

Jennifer, I was offered regular food for dinner after surgery but I had no appetite they offered me a pretty regular menu so I guess it's a little different for everyone.



Natasha

Amy4978

Please fill me in..... I am wondering how much help I will actually need after surgery I will be having a DBL BMX with TEs but in along with a total ALND on the right side. My husband will be taking the whole week off but we also have 3 kids 4, 7 and 15. My cousin has offered to fly in from florida to help me but I dont want her to unless its totally necessary.... Hoping one of you lovely ladies who has had the same surgery could fill me in on how many days the recovery took.

BrandieMcAdams

The ultrasound was "bothersome" to the first radiologist so I was sent for a breast MRI.



MRI showed I had dense heterogenous breast tissue but they didn't show the lump.



Went to a breast specialist, who basically said that they couldn't dx based on the images. First doctors told me it was just a "complex cyst and at worst papilliary carcinoma" and then the specialist through up a tumor...so who knows?!?



Specialist felt that because of size (very small) and location (directly behind my areola) they wouldn't be able to numb it for a biopsy or insure that the biopsy is a good sample and she would just advise me to have it removed. So they are taking it out, and hoping that its nothing. If it looks strange/concerning then they will consider taking nodes. They will do a biopsy and patho the



Hope everyone is still recovering well

new2bc

Suzilla,

My insurance paid for the camisole. Please check with your insurance and ask them what local stores are the ones they prefer so that you don't pay out of pocket. Every insurance is different but it is worth checking out. 

JRMH

Thank you for the answers about food. My husband has been insisting that we have soft foods, etc. at the house and I have been trying to convince him that by the time I am home, I will be eating regular food lol. Good to hear some actual experiences so I can tell him. He is so sweet, trying so hard to make sure that everything is going to go well. He is taking time off from work to be with me while I recover.

cinnamonsmiles- Thank you so much for the suggestion!

Hopex3

Hi Laurie, Chelle and Speedy...I'm glad you found us. This has been the best support group for me and I'm sure you will think the same.

Laurie, I'm sorry your going to go through this again. Hang in there!

Speedy. The waiting game is so hard. But it sounds like you will find something out today and be able to begin your plan. Once that is in place, you will be able to relax a little more.

Chelle. Sorry you were deliverd that news but it sounds as if your BS is proactive and wants to take care of things right away. I remember being In such a fog and just put my trust in the surgeon who hooked me up with a great ps. I'm sure that will happen for you as well.

Nat23. What a beautiful thing you did for that lady. I believe your surgery was delayed just so you could help that lady overcome her fears. What a way to pay it forward!

Peanutsgal. Thank you for sharing your story. I want to hear or read everyone's experiences, good or bad just to be prepared. I've heard that about the muscles clamping down on the TE'S. I wonder if anyone else is experiencing this. Hope your not nauseated anymore. Drink lemon ginger tea for that.

Cinnamon. Good idea on the measurements. I must do that.

Brandie. I think it's a good idea to take it out too. Better safe than sorry.



Hugs to you all!!

Lmimp64

Hi all. Welcome newcomers. Sorry we have to meet here, but everyone is so helpful and amazing. It's one place I come to to realize I'm not alone but surrounded by phenomenal fighters.



I also said I would be honest about my experience. Pam, I have needed a lot of help in the 48 hrs since surgery. The hospital sent me home the next day and I was doing ok but then the swelling and bruising increased. It's very hard to do much of anything as I feel like I have concrete blocks on my chest and under arms. The recliner is my friend. They say the swelling and bruising is normal. I'm thinking I should have gone TE route instead of straight to implants. Percocet manages the pain and makes it just uncomfortable and sore. I'm very sore where the aloderm was attached to my ribs. My range of motion is good, but I need help with drains, preparing food and adjusting my position. The hospital bed had a footboard that I could use to adjust my position. I miss that! Am walking and doing range of motion exercises as well as breathing exercises every hour. Was not expecting quite this. I thought implants would be soft and minimal swelling. Anyone else similar?



Thanks.

MMSS

Jennifer, the usual routine post op is to start you with clear liquids which tends to be broth, jello and tea or 7up or something like that. Sometimes ice chips first. Then if you keep that down OK they switch you to regular diet. You will probably be eating regular diet when you get home although you might want to put off the pizza and french fires. Many hospitals now give you a menu and you order from that menu just like room service. I had that when I had me knee replacement and it was great. No half warm breakfast shoved in front of you at 6:00AM. You wake up and call your order in and about 1/2 hours later Voila your tray appears.

jojo2373

Evening ladies, path report was good. I was so hoping for a complete response after choosing chemo first, but it was close. I got clean margins with the tumor showing a significant response to chemo. Only a few small areas of the tumor were "alive". 1 positive node remained with only micro mets. Now to get healed so rads can begin. Hoping everyone has a stress free and healing weekend!

jebdra

Wow, so many posts since I was last awake and here.

Welcome to the newcomers.  I'm sorry you have to be here, but this a really great support group.  I don't think I'd be as sane as I am without the wonderful ladies on here.  Have a read through this thread and check out NatsFan's and Smethots's analogies of their warrior nodes and lumpies.  I now have a super way of picking myself up when I feel down - I say "I'm going to pull on my warrior princess panties and squash my lumpie" and I laugh and things seem a little better.

Pam - your description of a tight spandex band around the chest and bunched up under the armpits is exactly how I feel as well.  Not really painful, but uncomfortable. Sometimes I feel as if I have an old ill-fitting bra on that has ridden up at the back and is cutting in under the boobs, except there are no boobs left!  I wonder if it is the incisions or the fixomull bandage?

Suzilla - I'm sure others have answered by now, but I had a bilateral mastectomy with SNB on both sides, so it's not quite the same as you, but I had no problems at all with arm usage.  I was up and using the loo by myself within 4 hours of coming back to my room, no problems cleaning myself etc.  If you have an ALND on one side, that may well be more limiting and painful, but your other arm should be fine.  I'm not allowed to lift my elbow above my shoulder until the drains are out, but that's the only limitation.  In Australia, they don't know about mastectomy cammies, so the drains are a pain.  I wear a dressing gown with big pockets in hospital and put the drains in there.  I'm thinking of starting a business making the cammies or belts with pockets for us down-under girls.

Jennifer - I know others have answered, but I got sandwiches given to me within 4 hours of getting back to room and have been on a normal diet ever since.  Your husband sounds a real sweetie (a bit like mine - he really wants to do things to help, but isn't sure what to do)

Cinnamon - that's a very good idea.  I read about that on another thread on here and got my husband to help me mark and measure and write everything up in excel, it took over an hour - then the day before the op the physio did it all again. *sigh*.  Never mind - if she hadn't done it, it would have been really worth while.

Lmimp - I can't believe the hospital sent you home the next day!  I only had a BMX (no reconstruction), and I'm still in 4 days later.  Nothing wrong, just my BS doesn't like sending people home with drains still in and wants less than 50mm in 24 hours before he will take them out.  I can't help with the implants I'm afraid, but maybe somebody in the breast reconstruction forum has had a similar experience and can help.

Jojo - that great news - a good path report is a marvellous excuse to celebrate.  I love sharing someboy's joy:)

Hugs to all for a safe and speedy recovery and best wishes to those still waiting.  It won't be long before you're through and out the other side. 

Now I'm going back to sleep to dream of NatsFan's warrior princess node and Smethots squashed lumpie!

Amy4978

I decided to have my cousin fly in to help. I envision my kids bouncing off the walls while my husbands trying to help me! Might be nice to have someone destract them when need be for the first few days.. Lol



Thanks for all the updates ladies you all are strong and have made me laugh and ease my fears. I love having you this is such an amazing support group!

Scatsm

Hi All,

I am 5 days out from my BMX, no recon, and it has been reasonably easy. Little pain so I am already off Percoset except at night. Drains aren't hard to do. Appetite is ok, not constipated anymore (started Miralax immediately)...all in all very manageable. What I am struggling with is my mood which has plunged in the last few days. I am crying all the time. Just so sad about the mastectomies, scared about the lympnodes, scared about the future ( I also have had ovarian cancer, stage 3) and at the same time time trying to deal with empty nesting...my youngest is a sophomore now living out of town...not a happy camper. I recognize that this is probably within the range of normal reactions, but I am uncomfortable feeling so low and hopeless. Anyone else out there feeling this way?

Susan

JRMH

jojo- Congrats on the good path report!

Amy- It's awesome that your cousin is coming to help!

Susan- ((hugs)) I am sorry you are feeling down. I have not had my surgery yet, but I battle depression (bipolar) so I know it's hard to feel so down. Thinking of you and praying for you.

kkuziel

Having my lumpectomy on Friday, and of all the questions I forgot to ask was how long I needed to be off of work (teach school) any one have a ball park figure on time off? I guess the hospital might give me an idea of the length of recovery when they call. Getting very nervous, which is weird because I had this scheduled the first time right after Christmas and didn't feel this amount of stress. Finding that I can't get my mind off of the what ifs. Does this get better?

Amy4978

Scatsm.... So sorry your having down days. But I say maybe its what you need right now, to let it out! I can imagine dealing with cancer twice. You are dealing with alot of changes so give yourself time. I have made the choice to get a bmx and I am comfortable with that but at the same time it is sad but just remember your alive! We are here is you need us ((((( hugs)))))

wirdgirl118

Hi runner1987, I hope everything went well for you yesterday and that you are resting comfortably today.