October 2014 Surgery Sisters

Hi Slavich,

It looks like I'll be doing radiation with you. What did your doctor say about the effects on implants? Mine said no effects whatsoever which is why I'll be seeing a second doctor...I just don't believe him!

When did you finish chemo? My last chemo was August 19th (I only did 5 out of 12 Taxol). I ask because I had a bit of neuropathy in my fingers and toes but it's almost gone now...just a little bit in the toes on my left foot, I only notice it when I'm in bed. It does get better!

I hope you're flying is taking you on a nice vacation...I think that all of us here could use one, and we certainly deserve it! If that's the case please have a wonderful time!

Hi Sugartoes, and welcome! You're in the right place, this is an amazing group of women that have ( for the most part) just gone through surgery and know how you're feeling. I had my double mastectomy 19 days ago and I'm doing really good now. I was a nervous wreck too, in fact I was terrified! You should be able to function right away, most of us are up and walking to use the restroom in the hospital. Lifting a fork, definitely! Driving in 4 days...not gonna happen...you need time to get the anesthesia out of your system. I only took pain pills every 6 hours for the first few days, after that I took Motrin during the day and one Percocet at bedtime...but everyone is different in that department.

7 types of meds, holy cow, what do they have prescribed for you? You'll find tons of useful tips here, from what to take with you to the hospital to what to have on hand and reachable for when you get home. My favorite tip was to get a recliner, I rented one from my local Rent a Center and have been sleeping in it since my surgery...I don't know what I would have done without it!

Everyone told me this same thing before my surgery and it really is true...the worrying, fear and stress leading up to the surgery is really the worst part of the whole ordeal. You'll do great, and I hope that you have off work the day before your surgery!

I don't know, maybe the nurse didn't know what she was talking about. PS was out of town, but she seems to deal with this end of the process more than he does. I'm considering also going to MSK PT to see what their assessment is.

I just think the damn fills hurt a lot and that's how my body takes it. 48 hours of extreme discomfort, followed by 48 hours of slightly less discomfort. Basically a day or two after I start to feel good, they are blowing it up more. And I typically have a pretty good pain tolerance; I've never taken this much Advil in my life. I think they need to slow it down for me. I'm so happy we are skipping this week. I may have to accept that I can't get to the size of my right breast and it will have to be reduced to match. At this point I am OK with that.

What I'm finding annoying is the total difference of opinions. PT thought maybe I should not move it too much right after a fill and wait a couple of days for it to cool down. PS nurse says, Do ROM exercises to alleviate pain. Does anyone know what is going on?

Whatever it is, I have a pretty good ROM for where I am right now, so I agree with PT that instructions to do more ROM exercises is a bit puzzling. I also thought she may be right that I should be icing the pec tendon a bit instead of heat. I also have focal latissimus dorsi tenderness to palpation. All of this has been since I woke up from surgery. I think this is all mechanical stress.

sugar toes, welcome! I am almost 3 weeks past bmx, no reconstruction (yet) and the tips listed above are spot on. The best thing I bought was a fleece zip up jacket with pockets on the inside, like where you'd put a cell phone. I wore one home from the hospital and almost every day since. Button or zip up shirts are critical. I've also lived in my recliner. For the first few days take meds on time and keep a lot because you'll forget when you took something last and some are at different times. The constipation issue is real, so I took a stool softener but it was rough. You'll probably be numb for quite a while, which is nice. Honestly, worrying about the surgery was way worse than the actual surgery. You've got this! Let us know how you do, we'll be thinking about you tomorrow.

Welcome Sugartoes! Sorry wou're meeting all of these great people under such conditions, but you will, (as we all have), find great support and understanding from everyone. It is a great place to vent, ask questions, and advice. You will see that each doctor has their own protocols and favorite treatment regimes, but advocate for yourself and ask lots of questions. It sounds like you will have immediate implants rather than tissue expanders. Best of luck and although it's nearly impossible, relax. You won't be working for several weeks, so enjoy it while you can.

SCMom: My plastic surgeon did not put the implant in-just a TE (against my wishes). I asked everyone and read online. He and radiologist both explained it would not damage the implant (i'm doing a gummy), but he likes to wait until after radiation because it may cause some internal scaring and it's possible to end up with misaligned boobs. He said he would start lower with the foob, and it would end up higher. I wouldn't care-if it did not mean another surgery. I'm going to have one 55 yr old boob and a new foob anyway! He is a perfectionist and would not be happy with that, so he put in the TE. I know radiated skin is risky to work with-so I will wait several months after radiation to give it the best chance.

I'm not too worried about the radiation. I know it will be painful near the end, but my friend worked everyday through it. She didn't become exhausted until it was over-then the whole experience caught up with her. My Oncologist said this is common and recommends taking a few days off when you're finished to just let your mind and body regroup (for my foob exchange!). The radiologist said they actually recommend not wearing a bra when it becomes red and try to sleep with nothing as well. Everyone has described different creams that have worked for them. She said I could start putting vitamin E on it now to start conditioning the skin before treatment. It is important to put lotion on several times a day, but not right before treatment-but immediately after. Maybe I'll try a different one each time of day. Also, PT said to lotion up the arm that lymph nodes were removed b/c skin will be drier. Avoid any cuts or scratches (eg.gardening) because it's easier to get an infection and then lymphodema.

I think it is much easier than chemo-no hair loss, eat and drink whatever you want, and no nausea. And it will be over in 6 weeks. I didn't miss any work with chemo and had very few other side effects. I have pretty bad neuropathy in my fingertips and on the whole bottom of my feet plus toes. The Oncologist said it could take 1 1/2 years to come back. I am still worrying I may lose some of the tooenails although they are growing quickly. They used to hurt so much just touching the sheets.

I am flying b/c my husband took a job in NC and my daughter goes to school there, so I feel this is a great break between treatments to go.

I finished chemo Sept. 11th- delayed a week due to low WBC. When do you think you will start radiation?

I had skin spaing BMX 4 weeks ago today. I didn't use a recliner because I have trouble getting out of them. I have my bed on blocks that brings it high enough that I don't have to over bend my knees to get in or out. I made a nest of pillows, so I was sitting up with a pillow alongside for each arm. .. I placed a small flat pillow under my thighs so I would not slide down (not under the knees, did not want to impede venous flow to cause a clot.) I got four of the little heart shaped pillows from the local American Cancer Society to position my arms and armpits just right for comfort. I've dealt with drains before, and I seem to leak out the drain holes, so I covered the arm pillow with water proof zippered pillow cases. I also got some of the pet piddle pads to place under me. That way when I leaked we did not need to change the sheets, just my clothes and pillow cases.The pads saved my upholstery when I was on the couch. I hope my explanation will help someone else.

LauraW, I had my drains removed two weeks after surgery, but with in a couple days noticed a fluid build up. I could actually push one end of the incision and watch a wave go across the skin. I thought I was regrowing boobs under my arms. My BS used a needle and aspirated a lot of fluid. He put me in a breast binder, which helped the pain. I have fluid waves again, so when he sees me today I'll probably be stuck again.

There are so many helpful topics on the main BC.org page. Here's a link to one on breast reconstruction which discusses, among other things, timing of radiation and chemo during breast reconstruction.

http://www.breastcancer.org/treatment/surgery/reconstruction/when

Su, yes, 40 cc's is only two tablespoons. Not much unless it is concentrated in a pocket under the skin like a blister. Ouch. 2 cups is 500 cc's.

It would be good for all of you to Google cc's to tablespoons, cc's to cups, etc. You'll be shocked at what a tiny amount it really is. There are easy conversion charts all over the web. Somehow we have it in our heads that a fill of 50 cc's is so huge...but especially when you consider it is spread out over a whole tissue expander, it's not at all. It can make us feel tight sometimes even with a small fill. Remember, tight is GOOD. That's what you are going for with a TE. Just not a huge fill that can compromise your reconstruction.

After surgery, a 40 or 50 cc seroma can feel like a softball under the skin, but it's only a couple of tablespoons of fluid. 

Sandra4611, I had tremendous pain after my last fill.  The right side is done now, no more.  The left though was the one they took the nipple and nodes.  So he has been filling slower, mainly because, I'm like OK stop.  I feel like I can't breathe when they fill me.  He said I can but my brain registers a signal hey there is obstruction, tightness, so I breathe shallow, he said don't do that, breathe normally because the chest cavity has not changed, he's right.  The first few fills were reclined, and the last two were more sitting up.  Do you think my pain was because I was more tense sitting up while it was done?  I don't have any abnormal swelling, like I've read some of the gals having.  The process is painless, but there still is a needle involved so I know I tense.  In my situation, my PS is doing me the favor of reconstructing me, but with augmentation....YEA!

Su, I hope you can get it drained tomorrow and that it solves that problem. Take care.

Slavrich (and others) - I've read that advice to keep the skin well moisturized in order to prevent lymphedema and I just don't get it. Unless one's skin is so dry that it's flaky and tearing I really can't see the concern about moisturizing it. I'd be curious as to whether anyone has any insights into that. Frankly, a lot of what I've read and heard seems to be based on 80 year-old theories rather than any scientific basis, and that makes me really skeptical.

As for caring for the skin during radiation, my nurse navigator suggested aloe and/or calendula oil. She said the calendula's more expensive but a lot of the women there seem to really like it. My RO suggested aloe as well.

And, as someone else has pointed out, the smaller one's breasts the less collateral damage is likely to occur. She said this while looking at my breasts, which definitely fall on the small side.

Good luck, Sugartoes. We're all pulling for you. Don't hesitate to ask any specific questions - you're sure to get lots of advice and support here.

Fourminor, bless your heart!  I cannot believe you went to work.  I truly did not think you would be able to after the length your high pain was going.

TJG2: First of all THANK YOU for your wonderful words of encouragement! I pray you are correct and that my dad will show his face sometime soon to watch some football and play a game of pool with his only daughter. BTW - MIL means mother-in-law! She really has been a 'mom' to me for these past 23 years and I adore her. We certainly have our ups and downs, but I praise God for her every day.

Everyone - thank you, thank you, thank you for your encouragement and love! I feel it very strongly and today has been an excellent day....

Went to see my MO: They only pulled 6 more lymph nodes from the ALND on Friday and NONE of them were positive... NONE!!!! That means NO RADIATION!!!! Yippee!!!!! I finally have some good news to dance for!

I start chemo the week after Thanksgiving and will be participating in the B-47 trial. As you all know, clinical research is my profession, so I am excited to finally be able to be a participant in a study! This trial is officially titled: "A Randomized Phase III Trial of Adjuvant Therapy Comparing Chemotherapy Alone (six cycles of docetaxel plus cyclophosphamide) to Chemotherapy Plus Trastuzumab (Herceptin) in Women with Node-Positive or High-Risk Node-Negative HER2-Low Invasive Breast Cancer". I am eligible as long as my HER2 does not come back as 3+ or 0. My only measurement that has been done was conducted using the FISH method - which only measures positive versus negative. They will now test it under the more specific test and if it comes back as a low level of HER2 then I will be eligible. If you are interested in reading more about this study, look for it in clintrials.gov.

At any rate, I am simply thrilled that I do not have to have any radiation! What a complete blessing. If I had kept to my stance on never having ALND, then I would have been doing radiation for nothing!

Anyone else starting chemo in December?

Love to you all with big hugs and a huge smile on my face today!

Akitagirl

Horsemom, yay for getting your last drain out! But, I am shocked and sickened that your PS would use that word with you. Has he/she completely gone off their rocker? And I'm assuming this is the same PS that did your surgery? Please don't worry about your daughter being ok...that's putting the cart in front of the horse, she may never even need this surgery. Please wait for the results of the genetic testing before you start envisioning this being her future.

((((Hugs))))

Just got back from the BS. He used the ultrasound to identify where my fluid was. He stuck me four times and took out over 140 ml (1/2 cup).