June 2016 Surgeries!

Icietla

You are welcome. We are sorry for your illness, but glad you found us here. This is a wonderful Community -- but more like Family, and with more understanding than you are likely to find elsewhere.

You will be able to move around. Take great care about it, though, because falling in your wounded condition would be a very bad thing.

Immediately after your surgery you will be very limited in what you can do with your arms. Every day following, you should find your range of motion and other arm use to be a bit better. You will be instructed on your arm use restrictions, and after your drains are removed, you will most likely be instructed as to arm exercises best suited for your case.

You will have some pain, and you will have pain medication to take for that. If you are getting tissue expanders, you will likely feel a good deal of tightness. Besides some degree of (steady) chest pain, you will likely also feel stinging "zaps" of nerve pain at or around your mastectomy sites from time to time. Those will likely come less frequently later than in the beginning. You may have more (degree of) pain, and for longer, at your nodes removal area than at your mastectomy sites.

Please know that none of this is to scare you. It is only to share what seems to be pretty common experience of recovery from that surgery, so you will have some idea what you can fairly expect. Your surgery is a huge step in your treatment, and you can do it!

Here is a link to a thread on Tissue Expanders, in case you are getting Tissue Expanders:

https://community.breastcancer.org/forum/44/topics/819027

Here is a link to our Forum section on Reconstruction of all types:

https://community.breastcancer.org/forum/44

Please keep mindful that much of the discussion thread material there -- besides in other Forum subject matter sections -- may be of complaints and/or complications. That does not mean that such experiences are universal or even nearly so! It is very likely because most of the persons having no unexpected troubles are not participating.

marveletar

Thank goodness. With all the stuff on the internet I was starting to scare myself. Good to hear some good news for a change. You really help pull me off the ledge.

FUBC

Maya, I wonder if you used R.SH. as BS at NYU? That was the BS I wanted to see initially but I didn't want to wait to long for my appointment as we were so panicked by the diagnosis.

My PS doesn't think I have seroma and yet Im hurting so much on my right side which is also very swollen. He gave me a refill of my anti-inflammatory pills so I am going to take that every day. If it doesn't get better by tuesday, he'll refer me to a pain therapist.

I was wondering how fast they got you to do chemo and see an MO. Mine wouldnt see me until a month after surgery. They probably rushed you through due to the more advanced stage. By the way, I have heard NYU has some really good MO. Lots of luck with the chemo and I will pray for you that everything goes smooth.

Hopefloat, kudos to you !! Your post gave me such strength.

SPECTER55

hello Marveleter,

This is a wonderful site with tons of love and support. At the top of this page are some very helpful pointers for preparing for your surgery from Maya15. I had surgery (BMX with immediate reconstruction) on 6/17/16. I didn't have cancer but, I have a strong family history, and other risk factors. I had extensive ADH in my left breast. A lumpectomy was not possible due to the size. I'm glad I had the BMX. I don't have to worry anymore.

My surgery took 4.5 hours. I had lots of complications, so my recovery was anything but routine. You can expect to need IV pain medication for the first 24 hours. Get up and moving as soon as possible. The drains are the worst part so far. The surgical incisions don't hurt that much. Oral pain medication will help. I got the "HEAL IN COMFORT " jacket with drain holders. I purchased top/bottom pajamas that button up the front. You won't be able to shower until all your drains are out. Doing your hair will also be a challenge. I have an adjustable bed so I can get comfortable. If you don't, consider the bed pillow with arm supports, or elevate your arms on pillows. Sitting up will be the best position for comfort. Prepare your meals in advance. Accept any and all help offers. Use this site for support, motivation, and encouragement. I wish you the best of luck and a speedy recovery. We're in this together.

marveletar

Specter55 - thank you so much. I'm the first in my family to get the diagnose of BC. They found a lump, then I find out I'm positive for the BRAC 2 gene and now it's turned into a preventative procedure.

I read that sleeping in a recliner will be helpful, is that an option? Heal with comfort jacket,where can I purchase that? Also, what kind of bras should I buy for after the procedure? I appreciate everyone's help.

Hopefloatsinyyc

you likely won't want to wear a bra... you will be restricted so a bra that is front closing or else one that can be stepped into work best. Coobie bras are popular choice here and are super comfy- and allow for the odd and ever changing shape of our breast (or lack there of) through this process.

There are different camisoles and tops that have drain holders but I just had them hanging from a cloth belt which worked well, and then hung them on a simple lanyard in the shower. Another trick is making a hole from the inside of a zip front hoodie pocket,so you can slip them in from the inside- discreet and comfy! The front button pjs are a must (or hoodies and tops) as you can't lift your hands over your head for quite some time. Victoria secret has some cute ones... And they are on sale! I got a bunch of cute ones and they were all $30 or less... And don't feel like "sick pjs"... I will wear them long after recovery!

Maya15

Hi marveletar, welcome! I found the recovery was faster than I expected. I had mastectomy with tissue expander and axillary nodes taken out. I was able to eat and drink right away. My surgery took 2.5 hours and I was in recovery room about 4 hours due to receiving pain meds and no space in the room I was going to. Once in the room, I was able to use the bathroom (including wiping on surgery side), move my bag and various stuff around, eat unassisted, and take a little walk around the ward on the same evening. My main advice is make sure they're giving you pain meds on a regular schedule to stay ahead of the pain. I was on prescription painkillers round the clock for about 5 days, then just occasionally, supplemented with ibuprofen and tylenol for a few more days. Was able to get back to normal activities including riding the subway after about 2 weeks when the drains came out.

FUBC, my BS is indeed R.SH. I was referred there by the doctor who diagnosed the cancer initially and luckily he was able to see me within 2 days. My MO is one of the most wonderful doctors I've ever known. I got to see an MO right away (as in, the BS introduced her during our consult and we went straight to her office to talk) at my second appointment with BS once the scans showed the cancer was really extensive. My case is a bit different from yours because they both concluded I should have chemo first, before surgery. It took about 3 weeks to get all the scans, tests, and biopsies done, but once the results were in I started chemo within 48 hours. Hopefully you might be able to avoid chemo?

Is your PS confident you don't have an infection? Presumably they didn't do another fill while you're in so much pain?

FUBC

Maya, he was my first choice at NYU. He usually works with NK as a PS and they do make a great team. NK was the one I had a consultation with and I really liked. My dream team though would have been my BS from sloan and PS from NYU, but can't have them all :-)

Anyway, I am happy so far at Sloan. I loved my BS. My PS promised to give me the smallest incision as I broke down in his office. It took me a while to come to terms with the fact that I couldn't have a nipple sparing MX. The incisions are small and he says once I have the nipple recon, the incisions will be even smaller. I'm crossing my fingers.

I didn't let them give me a fill today. I just pray I can sleep a little tonight, still in pain. It's really the right side that hurts a lot. The pain doesn't seem normal to me, but good luck convincing my PS.

Anyway, I still drove today...I need to get back to normal as much as I can.

How many rounds of chemo will you get?

Marveletar, welcome to board. It is great you're going for a prophylactic mx...I wish I would have done it a few years ago, I wanted to but insurance wouldnt have paid and the cost is over $50K...I wish I could have been able to afford it

Maya15

Sloan has a great reputation. My PS is NK's partner. I was happy with both BS and PS, which is lucky because I'm going back for a second mastectomy and flap recon on both sides in September (hopefully).

I've had 12 rounds of chemo, now I'm having "targeted therapy" (Herceptin and Perjeta) every 3 weeks for the next 9 months. Long road ahead still. I couldn't have nipple sparing either (cancer in the nipple).

barbski60

well, got my first fill yesterday and had to take the oxi - haven't really needed it until now - was using extra strength tylenol and valium. best advice was starting the stool softners 5 days before surgery and hiring a personal trainer as soon as I was dx. Was able to be mobile pretty quickly after surgery.

FUBC

NK specializes in implants, and I know his partner does flap & DIEP. Yes, your team rocks and I bet the MO is a good as the BS and PS.

I had adenomas on both of my nipples and that's why my BS had to remove them. Of course, at the time, judging from the MRI, they weren't sure what it was, but she said just remove it will cut the blood veins and eventually the nipple won't survive. I cried for two weeks straight, I am still not over it... at 41, separated and going through a divorce, I have no clue how am I going to be able to find a partner again.

Fake boobs is one thing, but fake nipples takes it to a complete new level

***signs***

FUBC

barbski you had your first fill on the 7th day after surgery? Wow. I had my first one 10 days later and I'm in such pain. Though I don't think my problem is the fill. There's something wrong with my right T

Maya15

Barbski and FUBC, how much of a physical difference did you notice with your first fill? I'm having mine on Tuesday and really ready to see the end of the current lumpy horror.

FUBC, so sorry you're going through a divorce at the same time as the cancer. I'm 36 and have been through separation and divorce also, but not at the same time as the cancer. It's really hard. Things had just settled down for me the last couple of years in a new relationship and then bam, I get hit by another truck.

It's not the best time to think about it, but you will find a partner again. I have several friends who had BC and didn't do reconstruction, who weren't in a relationship and have normal sex lives. My husband doesn't mind at all about the way I look post surgery, it's me who minds.

barbski60

the PS did a little bit of fill during surgery - not sure how much but he filled 60 something (not sure what the measurement was) when I was there on Wed. They are kind of small but they look like an athletic person's boobs (too bad the rest of me doesn't look like that). I did ask about losing some weight but the PS says not to - I'm doing a DIEP flap in a few months. To be honest, the old boobs were in the way when I was running so I don't mind being smaller. The taking it easy part is annoying but otherwise I feel relatively good.

FUBC

Wow Maya, it breaks my heart that you got it at such young age and God bless your husband for being such a sport about it .

My husband has been with me this whole time, of course we stopped our divorce proceedings for now and he has been a great help, with doctors and all, but I didn't let him look at my incisions. I don't want him to remember me like this once the divorce is finalized.

I knew three people (including my sister) that got cancer (not BC) during their divorces and when I left my husband, my only fear was getting sick like them. A year later it struck. What is it with divorces and cancer? I also had over 2 years of failed infertility treatments, which I partly blame. I took way too many injections of hormones to stimulate my ovaries.

My first fill was only 30 cc on 120 cc that I had after the surgery. Not much of a difference but I am not worried, I know they will look better once I get to 250-300 cc. The good thing was I didn't feel the needle at all due to the numbness of the area.

Good luck on Tuesday.

Hopefloatsinyyc

just got home from having two seromas on the bottom side of my breasts drained. Didn't hurt at all thankfully- and only got 35cc and 40cc out after three days since pulling drains so I still feel ok with having them pulled when I did. He said we may need to do this again (50/50 chance)... And one of the "risks" of going direct to implant with my BMX... but still worth it for me. Aside from that, all went ok?

I can totally sympathize about feeling sadness in the unknowns of being single and meeting someone after this whole process... Single mom- who was only just getting back to dating when diagnosed. That ended abruptly and now.... There are so many unknowns and lots of lonelieness... But I will get through it. There are a couple groups here of women in the same situation and it's nice to see how we aren't alone in those feelings.

Maya15

Barbski, that's an interesting point about losing weight. I'm also doing a DIEP, hopefully in September, and my PS says I have enough to go up from a small B to a C. I will ask her about it, since I was also hoping to lose some weight. Can't say I have the greatest record with weight loss, so it probably won't be an issue.

When are you having the DIEP and how come you didn't have it at the same time as the MX?

SPECTER55

Marvaletar, sorry to hear that you are BRCA positive, but now that you know so you can be proactive from this point on. A reclining chair will be quite helpful during recovery. My armpits are swollen and tender. Sitting up with my arms elevated is my position of comfort. We purchased an adjustable bed 3 months ago, so it's been quite handy. I still have to elevate my arms for comfort.

Here is the link to Heal in Comfort:

https://www.healincomfort.com/

The drain apron is great for when I am at home. The jacket has internal pockets for the drains. I wear it to my doctors appointments.

This surgery is a big deal, but you will be okay, because you are a big deal too. You got this!

I'm 4 weeks ahead of you, so feel free to reach out to me at anytime.

FUBC

Hopefloat, you've got such a great attitude. I read an earlier post of yours that truly gave me strength. It seems you're doing everything yourself and you're doing great. God bless you.

Mom2fourplusmore

I had my BMX with TE on Thursday. I had a rough couple of days. I was supposed to come home the next day but I starting shaking and couldn't stand up. The PS wanted to look at the dressing and I swatted her away because the pain so intense. Then I started refusing the pain meds and believe it or not I feel so much better. I'm tired but other than that I can't complain. I'm sore but it's not unbearable now. How is everyone else? What was the worst part for you...week one or week 2? How long did it take for uourecover

silviah

Hi,

I'm new here...so please excuse my lack of knowledge with abbreviations & all. I had a single MX on my left side on June24th. I also had a lypmh node dissection at the same time. The sentinal node was positive at the time of surgery and the BS felt that some other nodes looked "if-y". Still waiting on results. The right side showed clear in the MRI, so I had the genetic testing done and will make a decision if I will remove the right breast when I get the results. I'm leaning towards doing it....even if the results don't come back positive.

Waiting to hear is awful. Not knowing what my course of treatment will be sucks!!! My DH is doing his best, but I'm not very receptive to him....really anyone...right now. I'm trying to be positive, but my grouchiness is taking over at times.

I'm so glad I found this forum!!! It's totally making me feel better!!!

Lolliipop

There are so many strong and amazing women going thru this journey. I had my BMX on June 15th and I am still moving very slow. I'm grateful the surgeons decided to hold off on the tissue expanders. I think the second week was tougher than the first for me. Sleeping is difficult and everything feels so tight and stiff inthe mornings. I haven't found a comfortable bra to wear, everything just rubs in the wrong places. I'm sorry to complain but I am so tired of feeling crappy

tsoebbin

Hi all.... I had my BMX 3 days ago. Feeling good, but tight. I had a few big coughs tody and now I have some bigger clots in one of my drains.

Are clots normal? We've been stripping them every 2 hours and emptying every 6 hours as directed.

Anything to worry about?

barbski60

maya15

the PS recommended I wait to do the DIEP after the BMX. That was ok with me - I was kind of nervous about having it all done at once. The PS said we'd do the DIEP in Sept.

barbski60

lollipop

I agree the first few days were much easier - I've been home a week now and more things are sore. Feel like a I've been hit with one of those airbags.

Maya15

tsoebbin, the clots are normal but make sure you push them through the drain so they don't stop the fluid from draining. If fluid suddenly stops or slows, look for clots near the start of the drain.

FUBC

I have a question: Is it OK to have a glass of wine tomorrow (4th of july) ? I am still taking declofenac (anti inflammatory) and 1 pill of hydrocodone, usually 1/2 when I wake up and 1/2 when I go to sleep.

Any suggestions?

thanks

barbski60

FUBC

I would probably hold off until you are off your meds but a beer sure sounds good.

Hopefloatsinyyc

my PS said that a drink was totally fine so long as I was not taking any narcotics at the time. He then followed it up saying "but don't drink to the point of not feeling pain" which was funny- sand wondered if he thought I was a total party animal! Knowing I could have a glass or two of wine was incentive enough to ween off my t3s as quickly as possible! It alsomeant I was allowed to drive.

Mom2fourplusmore

I have a really tight bra/ corset thing. I told them in the hospital it was too tight. The nurses pretty much blew me off. I told the dr and he ordered a larger size but the nurses never would get it for me. Today I can see where all the pain is coming from. I have a massive bruise (that easy to understand) but my bra thingy is digging into my rib cage. It has actually rubbed the whole area raw. So this thing is literally cutting into my skin. I called the Dr and he said " I thought we fixed this yesterday." I told home the nurses would never find one and take care of it. He said there's nothing he can do now because the holiday weekend. He said he doesn't know know anything about my surgery but just take it off. He was so unconvincing and pretty much dismissive. Has anyone had this happen? Is this normal