October 2014 Surgery Sisters

Welcome MLB, you almost slipped by...You're also an immediate implant.  Glad you're doing well too.

Swoobs, SCmom Trails, and now MLB...How satisfied are you on size, projection, width etc...Is everything what you were expecting or did you have any surprises?

I'm surprised by the amount of swelling and bruising.  (So don't have true way of gaging size.  Right now they seem huge.)

Hopeful, no need to apologize!  I'll easily agree that losing my hair was the worst part.    I bought one wig, one ball cap with hair attached and also got a free wig from the cancer society. I wore one wig once, to a graduation in May...it was freaking hot and felt like a vice grip. Since then it's been bandanas and hats, beanies in the past two weeks. If it's any consolation I think winter is a better time to be without hair.   Mines coming in salt and pepper, straight (thank god!) and slowly (apparently the Herceptin makes it come in slower.). When I was reading the Weekly Taxol threads there were some women who used cold cap therapy/treatment to successfully keep their hair.   I don't think this is available everywhere but worth looking into. 

OceanSky, the one thing I was adamant about with my PS was that I didn't want high profile implants...I would rather have my size in the roundness and not how far they stick out. I can only see the top half, above any incisions, and up here there's zero bruising and the swelling, if any is minimal. All in all I'm quite happy. Going into this I thought at least one or two revision surgeries would be mandatory but at this point maybe not?  I'll look at the whole picture in another week or two, when tubes are out and stitches are gone...maybe. I think Sandra had said earlier that swelling can last a month for some people so don't be disappointed yet...I'm sure things can change a lot in a few weeks time. 

I wish we could say that once we are finished with our treatments for breast cancer we are cured. Unfortunately there is no cure for breast cancer. Does this come as a shock to you? It shocked me. Even with a double mastectomy I'm not cured? Nope. There is no cure. The best we can hope for is to be NED (No Evidence of Disease) for the rest of our lives...or until that elusive cure is finally found. Right now I am NED and not worried about when or if the other shoe will drop. I've done everything I can, to my knowledge there is no more cancer in my body, and my chances of recurrence are very, very low. BUT that doesn't mean I can say I'm cured and cancer free. I'll remain vigilant for the rest of my life because it could come back and I want to find it early if it does rear its ugly head again. Vigilant doesn't mean obsessed and worried though.

I've had several discussions with my oncologist about this and what it means in my particular case. She said that DCIS only grows in ducts and LCIS in lobules. Those two types cannot grow anywhere else, so since my cancer had not broken out of the ducts or lobules yet, and since all my ducts and lobules were taken out in the double mastectomy, I cannot get those particular types again. BUT since even the best breast surgeon leaves tiny bits of breast tissue behind, there is a chance I could develop one of the other kinds of cancer in those leftover cells. Since I also had LCIS and LCIS is a marker for increased risk of cancer somewhere else, it has to be factored in. She computed my particular chance of developing some kind of breast cancer again at 1% - 2%. I do not have to have chemo or radiation. I do not have to take Tamoxifen because while it can reduce the recurrence chances by up to 50%, that would mean I'd go down only a tiny bit to .5% - 1%. That's not enough to justify the side effects that come along with hormone therapy.

Have you had that conversation with your oncologist? Do you know your individual chance of recurrence? Do you know what you should expect from all the treatments you've been offered? Do you know what you should look for? I didn't...but now I do. Cancer isn't going to catch me unaware again.

SC Mom, I was told I couldn't have implants and radiation.  It was the #1 reason I had to wait 7 to 10 days after radiation for the implant surgery.  Mention this to a radiation oncologist.  I had my surgeries done at Orlando Health, it's U of Florida's cancer hospital, so my case was reviewed as part of their weekly meeting of cancer patients.   When it was determined I wouldn't need radiation, I was cleared to proceed with reconstruction.  (Sounds like getting a building permit.)

The admitting nurse wrote in a magic marker on my left arm 'Never take blood pressure on this arm',,,And leave that there for the rest of your life she said and explained why.

The recurrence rate conversation is completely shocking, I agree. After my lumpectomy in June, I was told by my BS that I wouldn't need any further surgery - then, by my MO that I would probably need more tissue excised because the margins were too close - then finally, my Radiation Oncologist went through the stats with me. 20-25% chance of recurrence by having just radiation at that point; 10-15% if I had another excisional biopsy + radiation, and 5% with mastectomy (in which case, if the pathology came back clear, I wouldn't need radiation). I'm 39...too young, in my mind, to take chances on the order of 10-25% as well as having 6 weeks of radiation, the long-term effects of which are still unknown. But my husband and I were both floored by this conversation as well. SCMom, I'm in the same situation with hormone therapy - I want to hear those stats before I make that decision. And Hummingbird, I agree - we can't let fear of these numbers govern how we live our lives. Right now, I am cancer-free. Period. That is something to be celebrated. 

Good news! Got my pathology report back today. My left breast was pretty infiltrated with the stage 0 cancer but nothing invasive (whoot whoot). If they had tried to do a lumpectomy they wouldn't have been able to get clear margins - so this was definitely the only choice. The right breast had atypical (pre cancerous cells). 

I saved my lymph nodes, and do NOT have to have chemo or radiation.

This is day 8 and they pulled stitches and 3 drains. I read a lot of posts that said it was no big deal but it burned like h---.  My 4th drain is still putting out 40 ml a day so hopefully next week. They filled each TE w 300 during surgery and will get them up to 600. 

I hated to hear the Bad path reports some of you are getting. I keep praying your next steps are easy for you. 

Hugs

Horsemom - so happy to read your good news. Thanks for sharing it. Let's hope that 4th drain is out soon, too, and isn't as painful as the other 3.

horsemom great news today congrats !

Galsal I had dbl mastectomy with immediate implants 4 weeks ago 680 cc truth is it isn't that bad I find it's the same complaints pretty much....underarm pain, armour bra, no range in motion. I didn't find it had anything to do with implants.

I had a BMX and 800 cc rounds put in the same day. Not bad at all. I think it's because they didn't have to stretch the skin since I was huge breasted before and was going way, way smaller. They removed everything that wasn't needed to cover the implants. The implants are under the muscle of course so you'd think there would be more pain from the pecs, but it all just blended in. 14 days later when I lost one of the implants and got an empty TE, I had a puddle of wrinkled skin and muscle spasms on that side, so I knew then what pec muscle pain felt like for a couple days. Just didn't have it after Direct to Implants.  Maybe someone should ask a PS and let us all know. Why the difference? Maybe it's because the PS leaves just enough skin to cover the TE. He knows you will be stretching the skin so why isn't more skin left? I can understand when you are small breasted to begin with that there isn't enough to cover an implant. What about the rest of you? People say all the time that they were a C or more before surgery.

At the first fill a few weeks later I got 180 cc's with no pain and the next week got 240 cc's, again no pain whatsoever. The pec muscle didn't care and the skin just puffed back up. Once the TE was fuller and looked like bursting I sure did feel the pain though. The TE looked 50% bigger than the implant on the other side, even though is had fewer cc's. The skin and muscle stretching was no fun and I sympathize with those who had to endure that longer than I did. (Only had to wait a month after final fill for exchange.)

So why does it hurt those who get TE's when they get fills but not those with Direct to Implant who got it all at once with the implant? 

Hello everyone. I have been reading these posts for  the last 10 days and found that it really helped. I am going in tomorrow for core biopsy on both breast. Went in for a lump in left breast-1cm but they found a mass 2mm in right breast.

Had dcis 1.5 cm in 1995 at 45.,lump, rad, chemo  Now I am revisiting all those feelings AGAIN. I am so worried I can't hardly keep from those panic rushes. I did a lot of research in 1995, knew a lot about what was going on with my cancer but things have changed. Back then it was Dr. Loves breast book, the library, and Cancer Society. I was part of a cancer group at the hospital for 5 years and worked with reach for recovery but drifted away from that for many year. This is a real blessing, you are all great at supporting each other, it helps to know that other little row boats are out there in the cancer ocean. Thank you for giving me the courage to keep rowing. Keep me in your thoughts.

I have my debridement for the necrotic nipple tomorrow morning as ambulatory surgery. I was very firm about no morphine. This will be a different hospital. 

I actually call this Sharpei's nose. It long ago stopped being my body part. It was useful in its day, fed two babies a good long time. (I took photos today to possibly share. Tomorrow it will be gone).

I am having a quiet evening. Yes, I'm anxious. I realize I probably have taken my body for granted much of my life. Now I am consumed with it. My world has gotten very small. I do not have pain but the TE is not comfortable. Yesterday it felt particularly tight at my sternum and I just had to sit quietly. I actually had another plan, but it was not to be. 

I understand the need to take care of myself but being the sickest in the room makes me an object of bad attention. I move a bit awkwardly, protective of Sharpei, and and of course with no bra, just this camisole, which holds the bandage on Sharpei and squooshes my existing breast, I do not feel so comfortable in my clothes. It is going to be my underwear for the foreseeable future, so I need to figure out what to wear so I feel good. Time to work with my scarves and get some ponchos, I guess.

It has been four and a half weeks since my mastectomy. I hope tomorrow's surgery clears up this skin problem and I can feel more normal, move on with the fills. We want to make plans and it still feels very difficult to know what I can do, when. I wonder how many cc's I will lose when I am deflated tomorrow. How many extra weeks will that mean? Will we ever get to Florida and my condo project which really needs me?

I did my pre op bathing and there is a lot of numbness on my back and side as well as the chest. I think some parts have awakened slightly. Guess this will go on for awhile. What will the New Normal be?

I am very grateful for fine care and support and I hope tomorrow's event continues that. Ommmmmm. Time for some yogic breathing and meditation. Thanks for this site. I do feel alone. No one I know really understands what I am going thru. It is helpful to know you all are there. Unfortunately each one of you is going through her own personal drama, scare, pain, uncertainty, character building exercise. For that, I am sorry. Thank you. I wish you all strength and courage and hope.

Sharpei

It is your beautiful smile, Akitagirl, which will get you through. I love the wig and the pink brace bands. 

(I had braces at forty. I still wear my retainer every night 28 years later. But I am very glad I went through it. Bet you will be, too).

Good luck. That is a busy schedule you have. Take care of yourself. And thanks for sharing.

Sharpei

Looking good Akitagirl!  I will be thinking of you on Friday!   Speedy recovery!

I'm doing ok Hopeful.   Thanks for asking   UMX is definitely more to recover from than the Lx or it's the 2nd surgery in month or I'm tired or all of that lol.   I can't believe I could forget how the heavy arm/underarm/back of arm felt.  I was surprised to see my ALND and UMX incision are one.  I couldn't tell until yesterday when binder came off and drains removed.   Bonus!! Lol   I had partial shower today and that felt good.   

I will post more soon.  Hope everyone is doing well!

Sharpei, am so sorry to hear your story.  Am hoping things will look up after your next surgery!  At my PS appt today the nurse told us a lot of women loose one or both nipples to necrosis.  She told me how lucky I was.  

Cute wig Akitagirl.  Am sorry you have to go through more procedures.

Su-C,  I got my drains out today too 6 days post-op.  I still have to wait another week to shower though. That will be a happy day.

Welcome Rev-up.  Sorry you're having to revisit your cancer journey.

Best to the rest...I didn't name everybody.