August 2013 Surgeries

Ladies,

I had my first fill - and it was so much better than I expected.  My PS also only fills 50cc - at least at the first fill - and althought it was explained to me last week that is about 2 tablespoons and doesn't sound like a lot.....when you see the huge plastic syringe with all that fluid it certainly appears to be much, much more.

They found my ports which had moved slightly towards the underarm areas (no big deal they said) and the fill procedure itself was quite painless, to my great delight!  My fill was about 2 hours ago and I've yet to feel any pain from either muscle spasms or inflammation (of course this could all change as the day/evening progresses but I'm feeling pretty confident it won't).  Of course, due to my pinched nerves in my lower back, arthritis in the neck, and chronic headaches....I've been on daily muscle relaxers and anti-inflammatory meds for almost 10 years.  I'm sure that helps keep whatever pain might be associated with expansions at bay.

I asked why I hadn't received any expansion at the time of surgery like most of you and was told because I am so small framed and thin and the pec muscles were shown at time of surgery to not be very pliable, they opted to try to lessen what they knew was going to be considerable post op pain as minimal as possible. I was told if they had gone ahead and done any fill at the time of surgery, my post op pain probably would have been 3 fold of what I actually experienced.  I guess that explains why I got more pain relief taking the anti-inflammatory med, Toradol, than I did taking the pain medication they gave me.  I still have swelling in the pec muscles that run from the breast area up to the shoulder area so I'm most worried about these being aggravated with expansions - but I'll deal with that should it arise.

Hope all is well with everyone.  I'll check in later and see how the day went for everybody and update you should my expansion begin to cause any pain.

Oh - the nurse also looked at my drains.  She said I am getting really close to having them removed....it's like maybe a teaspoon worth of fluid that needs to decrease yet before removal.  She looked at the fluid that is in my drains and said it looked exactly like they want it to look - getting very clear.  So I'm almost there!!!  And hopefully this expansion will take up some of that dead space to lessen the fluid output so by this week I could be jumping up and down with joy of not having surgical paraphenilia hanging out of me or lugging these stupid drains around my waist - that what we're all hoping for anyway.

Thanks for the info Lili-- my fear is of the needle going into the port- I logically know it is in the center there below the skin but the image of it approaching my chest and then poking in --- oy vey!

I saw the BS today. Got the drain out. (yay)

In discussing the pathology reports we learned a few things and one is that he suggests I go back in for surgery on the 16th. My breasts are small, no extra fat, and the tumor & two attched lobes he removed were in my chest wall. (taking up a lot of room) He got good margins on sides but on the top it was right up to my skin. And evidentally he feels he needs to get back in there, clean up.

He meets with *the team* on Tuesday & will call me with their suggestions. But he & I both feel ok about the second surgery. So I think it's a go.

It will delay chemo by 2-4 weeks.

Have many of you been back fro second surgeries within  couple weeks of the first?

I was half prepared for a second surgery, just from my research. I thought perhaps he would have to go in for more nodes. So to go in where the lumpectomy incision is shouldn't be a big deal. That gacve me no grief & is healing well.

Aviva- I always said that the Martians took my daughter at the age of 13 and returned her to me when she was 18.  She is now 35 and truly by best friend!

Lili-please let me know how the first fill went- my first one is in 3 weeks.

All the drains came out today and the bra came off too-feel soooooo much better!!!  It was funny today at the PS.  He kept marvelling at how great I came out thus far.  He really didn't expect things to look so good on my left side due to all the radiation and the fact that I was burned on that side.  His plan is to do a fill in 3 more weeks-probably 50 cc but that will depend upon me he said.  If I don't feel any discomfort he might fill to 75-he doesn't really like to do more than that on a radiated side.   My right side is filled to 300 and my left to 200.  He also said I should try on my clothes, bathing suits, and tank tops to see if I like the size on the right.  I told him instead of Build a Bear we're doing build a boob!  Each time I see my PS I like him better and better.  And, I think I look really good for this point in time.  So happy!!!!!  Anyone looking for a PS in NYC just PM me-he accepts most insurance plans.

Babs

My expansion yesterday of 50cc  update -  OK, I’m sore now.  I started getting upper back pain on the right side first (my post op pain was all in the upper chest and upper back – hence why all the medical teams seeing me the morning after apparently knew it was reconstruction that was to blame for my pain).  So, had that for a couple hours and then the pain started in the upper chest.  Not bad pain, but a little painful.  Took a look to see if I had any of the baby boobs some of you have spoke of and I have to say, what I have is better described as swelling!  But, what’s weird, is these swellings – which obviously are what will become my breasts – seem to sit too high.  I know going the implant route means I’ll have breasts like a 17 year old instead of what would appear naturally on someone my age, but I didn’t expect them to be so high.  It’s a very strange feeling having breasts up so high, like I might bump my chin on them once they become boobs……Do any of you have this as well (not bumping your chin on your boobs! But that they seem to be set higher than where they naturally fell?) 

And forget about my wearing the cami or mastectomy bra w/prostheses. The cami feels terrible against my chest and both garments come up so high there is no way I can wear any of my work clothing w/o these garments peeking out (I mean, come on, they like almost reach my collar bone, for goodness sakes!).  So I’ll be shopping for prosthesis that are easier to work with (I was provided w/the ones w/fiberfill so as I’m expanded, I can remove more and more fiberfill).  Yeah, I removed some (they seemed so huge; I think I just got so used to seeing myself w/no breasts that what they gave me, seems way too big). As I removed some, the forms themselves got lumpy looking (is there nothing easy in this whole ordeal?).  As time goes on and I remove more, I only see them getting lumpier.  And forget the mastectomy bra they gave me, it sits too high w/no adjustable straps!   I just ordered and received 4 tube tops and that’s going to be my garment of choice I believe for the foreseeable future. 

Anyway, that’s my experience about 24 hours after first expansion.  And my dilemma w/prosthesis – so if any of you have or had the same issues and can make suggestions, please let me know. 

Lisa

babs - yeah, I thought my husband would do the same thing but he surprised me.  I guess after all these years he knows I will not get behind the wheel unless I am 100% certain I can handle anything that comes my way.  I've always been that way but he's a little overprotective when it comes to all things cancer and recovery.  So surprised he was OK w/it.

I'm glad you also will be returning to work part-time.  It feels good, getting back a little of our independence even if on a limited basis.  Seems a lot of us are crossing some of the barriers at the same time (except me and my stupid drains......) which I guess means we'll likely not be able to post as often as we had been.  Work takes up our time, then we have our families, so we can only do what we can do in a day and we all need to keep close track of how our bodies are reacting to more activity so as not to overdue it which will probably mean making time for resting/napping.  I found I felt great when I went into work 3 hours last Saturday - but I paid for it that evening and all day Sunday.  It obviously took more out of me than what I felt as I was working so I know that's something I myself will have to watch this next week. Oh well, what is one going to do but push forward while balancing how our bodies are handling it.

So your breasts are sitting higher as well.  See, in my mind this is my thinking.  If the expansion is being done higher than where our breast orginally fell, then how is the pec muscle being stretched lower down for the final implant to have the ability to fall and spread?  That's what keeps going thru my head but as I've said before, this is all so new to me and info on the internet can be so conflicting I try not to read too much and rely on my medical team for that, but it doesn't make sense to me.  I guess, here again, we'll all likely be having our final implant surgeries around the same time (if chemo doesn't delay it for some reason in any of us) so we'll all be comparing notes on how the final product looks.

Will you be wearing a bra or cami when you return to work?  If I recall, you had quite a bit of expansion at the time of your surgery so you've got breasts already (while I have "swelling" - no way you can call what I currently have "breasts") - I guess with you my question would be if you can wear a regular bra and if you can, will you? I'm just curious what other women are planning to do....I hate the feel of the prosthses so I may just go back to work being incredibly flat.  I just don't know but need to decide in the next day.

Chat with you soon!

Babs, thanks for the info.  I believe I've found what I'm looking for based on your suggestions.

I don't know about the pec muscle and the fall and spread issue but I'm going to mychart a message to PS on Monday.  I'm just curious how this is all going to work in the end.  I do know, when I questioned her in jest "'so should I be shopping for breast shapes now or how does this all work?" - she said THEY make that decision based on body shape and what they determined at the time of TE placement on how much room they had to work with when placing the TE's.  I had seen some shapes online and I believe I want the silicone teardrop shape when final implants are done because they just seem so much more natural in shape as we are at our ages.  I hope I get to have some say-so; OK - I will have some say. 

Have a great day!

aviva - yes, we should have our say.  I didn't push the issue because, quite frankly, I'm so obsessed w/what I can go to get drains out I just asked the question in jest.  But, I'm not going to allow a final surgery w/o knowing what breast shape I'm going to end up with.  I will, however, take their recommendations into consideration.  What do I know of implants?  Not as much as they do, but it's my body and I have to live with the results.

I had not heard anything about the "turning" - how can that even happen w/implant that is tear-shaped?  I believe my PS said prior to surgery that they will be using textured silicone implants on me - and that I need to know I will likely have some wrinkles.  I just laughed at him and said "I got wrinkles everywhere else, why should I be concerned if I have them on my breasts?".  He said saline would cause over-wrinkling in me - so that's why he's going w/textured silicone.

Don't you all find it odd that we even have to ask one another these questions?  I've had way too much time on my hands during recovery and I've got to say, although I made the best decision I could with the information I was provided, I really wasn't provided with a whole lot of what to expect with the reconstruction.  Just the basics.  I'm almost getting the feeling at least you and Babs might be in the same camp?  It actually makes me angry to think about it (so I don't think on it often) - I just HATE when I'm not provided with every and all details before agreeing to any type of procedure.  And being a regular lay-person, how was I to know there were more questions I should have been asking?  Know what I mean?

Just my random thoughts......

Im hoping that when its time to discuss options he has a whole spiel to say and will educate me. Not me asking him questions based on what research Ive done.  Im happy with my docs answering everything I ask- but info should come from them to start with. I really like my PS, so he hopefully will give a few choices and then Ill decide.

I had hasked him if he uses alloderm, cause he never mentioned it (this was in pre-surgery!) , and he said no and explained why (used to- but too many incidents of problems/infections) and why he doesnt any more. That was good but he should have explained in more detail by that point what the whole TE thing involved.  Guess Im just happy that I am getting good treatment..

I just had a bilateral skin-sparing mastectomy on August 22nd. I thought I was going in for preventative mastectomy as I have 5 immediate female family members who passed away from BC and 3 survivors. I am 40 years old. My surgeon is not one for long conversations but his first comment was that all his patients needed a recent mammogram. Then he did a physical exam and as I was there with the intent of a preventative mastectomy, after examining my left breast he said "no need for a mammogram and we'll schedule your surgery for the first available opening."



So within 3 weeks I was in the operating room.



While his communication skills aren't great :-) he's an awesome surgeon and I was grateful that he chose the method he did as he originally said that I would definitely have lots of scarring.



So here I am 2 weeks later. He did not put in drains as he said I didn't need them. I have developed a seroma 10cm in length and 2cm in depth as of last Sunday. By Tuesday my nipple looked like it exploded and there was a lot of bleeding from an opening at the bottom near the rib cage. He wasn't concerned and said it was normal and he'd see me this coming Tuesday.



Obviously for him this is normal, he sees it everyday. I'm starting to get used to it and the rib cage area has stopped draining/bleeding.



As I said I'm grateful he was able to use this method. He said he got everything in there, it is clear and all clean margins so I'm grateful I went in when I did. I just wasn't prepared for "preventative" to turn into "cancer".



I don't really have anyone to talk to so I'm grateful I found this site. I'm wondering if anyone else has had this procedure and experiences a lot of pain between the breasts at the ribcage area? I don't take narcotics, only extra strength Tylenol. I've had this pain since day go mostly when I try to go from a laying down or sitting position to standing up. It's much better than 2 weeks ago :-D but I just wondered if others have had that too.



I sure wasn't prepared for all the bruising and even still getting used to seeing my body looking different.



I'm grateful that my nurse had been through two mastectomies, the "traditional type" for lack of a better term for this newbie in this world. I could never get through the past month without her.



Anyway, I just wanted to share my story with someone else. Thank you for listening.

Poodle_mum – First, let me welcome you to our group and I'm glad you found us. 

Did you have any immediate reconstructive surgery?  Sounds like you had a nipple-sparing mastectomy – is that correct?  I had bilateral mastectomy (BMX) and mine was skin-sparing which meant they had to remove the nipples. 

The chest pain you speak of I’ve discussed here and at other threads.  It’s somewhat similar to mrtw43; but I wouldn’t describe mine as being in the rib cage.  My pain was felt IMMEDIATELY upon waking after surgery and I still cannot sleep with any pressure on my back without waking with a bit of pain – pain is in the chest/upper chest and the entire upper back area.  I described it to nurses in hospital and family that was with me like this “this has to be what a heart attack feels like”.  That’s how bad the pain was and nobody prepared me for anything like that.  Every doctor, resident, and nurse all said it was due to my reconstruction surgery and not that BMX itself.  It has gotten better.

Does that sound like the type of pain you are having?  

I can’t believe you had no drains – did he or the nurse explain why?  (you’ll find I’m obsessed w/drains……I’ve been tied to mine now for nearly 5 weeks while I watch all the other ladies here get theirs out 1-2 weeks post op – very depressing!). 

Your comment on your surgeon sounds familiar to me as well.  I had/have great faith in him and he is very well respected in our area.  He communicated very well in all areas except that he had a tendency to downplay quite a bit (which I didn’t know of course until pathology reports came back).  I’ve come to accept, with the help of listening to others in this forum, that he probably just didn’t want to answer my questions because he felt they were more directed and Oncology should answer them – but the way he minimal zed things at the time was very frustrating to me.  He should have just said “you’ll need to speak with Oncology about that” – oh well, he was a great BS and I’m glad I had his skills to take care of me. 

Again, I’m so glad you found us.  It took me almost 3 weeks before I found this lovely group of ladies but I’m so very thankful I did!  It has done me a wealth of good being able to connect with others going thru what I’m going thru, at the same time.  We are able to bounce things off one another and I believe we have developed as quite a support group for one another.  I hope you find the same! 

Mrtw43 – your pain does sound familiar but mine is not in rib cage.  It’s all the “yanking and pulling” getting the TE’s placed and then getting the pec muscle closed back up – that’s what every member of my medical team has explained.  And it makes sense; but you did not have that type of reconstructive surgery so it’s odd we are experiencing similar effects from our surgeries.  I don’t believe the description you received that “it was from all the “digging” around sounds like the culprit and I say that because all the nerves were cut and we should technically be numb which in my simple mind tells me any of the “digging” or “scraping” they did should not be a cause of our pain.  But I’m like you, again, when it comes to sleeping (I only just slept on my full back for the first time 3 nights ago and I’m over 4 weeks post op!) and I still get all that, what I would call “pressure” (not pain at this point) in the upper back and chest.  With my recent expansion of TE’s, it appears my upper back is what is being affected first and that pain transfers to the front, upper chest area.  

I don’t know a whole lot about the Deip reconstruction process as I knew I didn’t want to go that route…..do they cut into your pectoral muscle at all when they do that?  

Kbeee and others regarding PS – I hope I didn’t open a can of worms, there.  I do, however, believe I did blindly follow what BS and PS were telling me to do prior to surgery but please remember I literally “fell apart” and was put on anti-anxiety meds during the 2 weeks between diagnosis and surgery (not that I couldn’t think for myself – I could and did – I’m just explaining I needed something to help me get thru that horrible waiting period and all the “what-if’s”).  I had actually, and my husband does not even know this, decided I didn’t want any reconstruction because I didn’t feel I knew enough about it and my pre-op appointments was to be the time I was going to say I wasn’t going to go thru with it.  I lost it during those 2 appointments; completely lost it.  I just completely fell apart and felt so overwhelmed at everything but the BS and PS were very thoughtful but a little taken aback because I had been so strong previous to this but I never spoke up about my reservations w/reconstruction.  I met w/PS first and after we discussed the procedure (and at this point I realized if I didn’t do reconstruction now, I probably never would so I just needed to “get strong” and get this done) I agreed to have it done.  I asked what questions I had, but they in no way encompassed everything I’ve learned since.  And I shouldn’t have to ask any questions – it is their job to inform the patient of everything.  But don’t get me wrong, I really really like my PS, his PAC, and his entire staff – they are a wonderful group and again, very well respected in our area. But I wonder if because we were newly diagnosed and having to deal with everything associated with that alone, if perhaps PS tries to cover all bases in THEIR minds and they don’t want us to get bogged down with their part in all this.  And I’ll be the first to say, I was so totally consumed with “get this cancer out of me” that PS was an after-thought and I purposely didn’t do much research on it – so maybe they are more apt to just get the basic info to us at the time and we can get to the point of more questions/concerns AFTER the surgery when most of us have had our cancer removed (or mostly removed – I know I may still have some elsewhere in my body having had one node test positive).  Maybe – I’m trying to give the benefit of the doubt to them because I know I was more concerned with the cancer at the time than I was about reconstruction.  I hope I didn’t unnecessarily cause anyone to doubt their PS in any way – not my intention but wondered what others were told after I heard they choose the final implant that best suits my body.  After I had a day or 2 to take that in, it just sounded wrong to me and I wanted your opinions and what you have been told.  So, please, don’t let what I brought up cause anyone to doubt their PS….if you think it means you have more questions for them then it’s a good thing I brought this up because I believe we all must be fully informed! 

Friday’s expansion update:  I have to say, I’m feeling better than I expected (given all the post op pain I had).  The bad soreness set in about 6-8 hours after expansion but within 24 hours, I feel basically the same I did prior to expansion.  And…..guess what, ladies…..my drainage has FINALLY slowed down!  Had 25ml in one drain and 30ml in the other in 24 hours from Friday evening to Saturday evening.  Know what that means?  If this stays the same today….I get the drains out on Monday.  So please, if all you good ladies could cross your fingers, legs, toes or anything else you can physically cross for my benefit….I’d appreciate it.  Good Gosh, I’d rub a Buddha’s belly at this point!!!!  I have been wearing a tube top for compression since Friday as well so maybe that and the expansion filling up some of that dead space was just what I needed.  I’ll let you know on Monday if I can join your group of “I got my drains removed”! 

Hoping everyone has a wonderful Sunday.  Keeping everyone in my thoughts and prayers!

Lisa

VintageGirl: I had the second surgery in order to obtain clean margins. My experience with the 2nd surgery - much easier and shorter recovery. My only remaining issue is soreness remaining from SNB...not sure why.....LiLi

aviva - I have read that TE's can "migrate" but I don't know that you should be feeling them under your arms or feeling them come together when you lean towards the side to sleep.  I'm no doctor, obviously, but that sounds like they move too much.  And that is strange if you readjust your arms that you feel better.  Can you refresh my memory?  Did you have any fill at the time of placement?  My PS said the ports can move, and mine did, but less than an inch.  I cannot feel the TE's at all and I don't think they should move around as much as yours seem to - have you talked with PS about this?

Sounds like we all are stuck sleeping on our backs!  I can't wait until I can sleep on my side (Monday?); my back is killing me from sleeping on it all the time! Or....are you wonderful ladies going to tell me my side will be too sore having just gotten tubes removed?  Please let me know......I'd rather know before I try it myself.

aviva - it could be that the muscle is forming scar tissue around the implant itself (not uncommon for this to happen).  I did talk to PS about this before surgery and he said it is very common; nothing to worry about and they can correct it.  It's called encapsulation - could be what's happening.  The TE is a foreign to our bodies and our bodies go into "fight" mode to fight off anything foreign....that's what happens w/encapsulation....my easy and simple way of putting it.

You see him tomorrow so he should be able to address the issue.  It just sounded so weird how you originally stated it that it sounded almost like you FELT them moving (and that has to be a very strange sensation!).

Let us know what you find out!

Babs,

Grrrrrrr!!!!!!  If it was for you, and mine have been in almost 5 weeks, I'm going to assume it will be same for me.  I'll give it a nice, gentle, slow try........but since my soreness where the tubes are sewn in my sides have gotten more and more sore as time has passed I'll probably still be sore for a while until they heal up.

Oh well - ask me if I care!  As long as I get the drains out I will be one very happy lady.  In fact, I might be the happiest gal this side of the Mississippi!!!!!

Lisa