August 2013 Surgeries

Aviva, there is a company called Head Coverings and its founder actually had breast cancer.  During the winter I wore four incredibly comfortable all cotton turbans rather than a wig most of the time.  Those were wonderful and so comfortable.  Knit caps don't always fit properly.  I was given several at my chemo center but never wore them because they had such a weird fit.  The turbans adjust to your head because they have elastic in the back.   I love the scarf look, but being all thumbs knew I would never be able to tie them in a stylish and chic manner.  Grateful for turbans.

Hope you can forego chemo too.  wishing you all the best.

I went for my CT Scan (to check for metastasis) this morning after drinking that lovely barium drink last night and again this morning. I started in the Chemo Department where they accessed my port for the first time - the nurse flushed it, drew some labs for blood work and got it ready for the CT scan.  The brand of port I have (Power Port) is able to be used for the contrast during the scan so that was nice. The nurse gave me a shot of lidocain before she put the needle into the port. I have an appointment with the MO on 9/19 so I assume that I will get the results during that visit unless he calls before that time.  Hmmmmmm waiting....I think I know how to do that!

Lisa - drains, drains go away don't come back for another day....

Thank you to everyone for "reading" me ramble the other day. I went to see the surgeon today. Since it was again only a 15/20 minute check up, I didn't get an interpreter. I will for sure when he tells me he wants a longer appointment.  So what I got from him today from my speech-reading and the nurse clarifying parts afterwards was that there were cancer cells in very early stage in milk ducts (I think he said) and he pointed to the area which was "complicated" which I gather meant was the area he found them. So I'm still not sure of the accurate terminology.  He said that it was a smart idea to decide on preventative mastectomy when I did because it would have been more serious and much treatment involved at a later time, but I had nothing to worry about right now.

He had the nurse explain that I'm supposed to do massage and how to do it and she did say since I still have a seroma it may re-open but not to worry, it is not a big issue, put some gauze on it and it will do it's thing.

I hope I don't sound extremely naiive but I'm actually feeling more relief.  All the tape is off as of today so for the first time I really did get a look at what is there and even though I thought I'd be ready (since I've had glimpses through the tape and when they've changed it), I'm still not.  They said within a few months, my tissue will shift, once all the swelling goes down and they will look really good. A friend suggested I just avoid looking at them in a mirror because seeing them is bothering me and we want me to move forward.

Please let me know if I'm posting in the wrong place here. My mind still hasn't really overcome all the confusion, information and procedures over the past month.

He said that he doesn't need to see me for another month and just let nature do it's job.

Thanks KBee :-)



Has anyone else been told about the massage? If not on this thread, maybe on another?



From what I understand it's to increase blood flow and also to help the fluid re-absorb into the body better.



The nurse showed me, it's basically like a self breast exam but then she showed me on my upper arm the pressure to use. Holy crow! I'm only 3 weeks post-op this Thursday - still in pain - well at least in the areas that still have sensation. I think because parts have no sensation it might make my brain think the other parts hurt worse than they do.



But I seriously need advice on this so if someone can direct me into the right thread or direction, I'd really appreciate it.



It just seems they want me doing everything so soon. I spent the first week trying not to pass out when sitting up and trying to sit in my power chair (I have a spinal cord injury). I can't use my manual until everything is healed. Now he says at least 30 minutes outside twice a day in my power chair (I have a service dog so that motivates me there) - but he has no clue how much sidewalk bumps hurt no matter how slow you try to go over them.



Ok that part was my venting. But yes, if anyone can help with how to deal with the massage issue I'd greatly appreciate it.

Lisa, I am seeing the oncologist in 4 hours and very anxious to hear what is offered (if anything). I am 66 and apparently it is harder on younger people. Older people aren't always offered chemo depending on general health and right now mine is a mess thanks to blood loss in the beginning from the positional drain and lack of guidance. I was finally going to see my surgeon for the first time tomorrow (4 weeks postop) and they called yesterday to say she is too busy after her vacation and I will see a nurse. I am not impressed with how things have gone so far.

The good news (I think) is that my drain has slowed yo 32.5 cc the last 24 hours but it is still bright red.

If I'd been younger I might have gone for reconstruction but I just wanted to keep it simple for now.

I'll let you know what the oncologist says although it will likely be different because of my age. 

Thank you again for the posts here. The most help I have received to date has been from this site. No one on my "team" ever mentioned "triple negative".

Have a good day (as good as possible) everyone. xoxo

Lisa - I have no idea why the CT scan over the PET scan. The only question I was asked by MO was if I wanted to pursue any further testing to find out about mets and I said yes and the nurses on the way out told me they would be calling with details of my CT Scan. It was a long appointment as it was my first with the MO so I know we didn't have a chance to discuss everything in detail.  I was so glad we were going to do any testing because the mets are what scare me most.  The MO said he did not get a clear indication of any symptoms of mets from our conversation, so one theory I have is that my symptoms did not justify a more expensive test from the start, but that's just a theory.  I have had salivary gland cancer in the past and I have a yearly chest x-ray to check for lung mets so to me a CT scan was a step up!

Hi ladies.  Thanks for all of your great posts.  Sounds like the doctors are all over the map. 

I am 7 days post exchange left-side surgery and I still have a drain.  The exchange was done in doctor's office; my left mast and ALND was done July 30 (overngiht in hospital), so a fairly quick turn around.   

They told me I could shower after about 4 days.  Sponge bath until then.  It's hot here, so I gratefully started showering when allowed.  They said not to have the water directly hit the incision.  I hang the drain on a bathrobe tie around my waist and cover the drain insertion area with a nonstick pad and one piece of tape which I remove right after showering.  After showering I dab the area around the drain (VERY VERY GINGERLY) with Neosporin on a Q tip.  The drains are so sore - has bene true for me both times.  This time they left rather a long "hose" and today I was walking into the bathroom while changing and caught it on the doorknob.  I would have said a few choice words if I had been able to get out anything except a kind of shriek.  So watch out for attack doorknobs!!!  : )

My PS says the more I do with the arm & side, the more fluid will be generated, the longer I will have the drain and have to be on the harsh antibiotics, which are not making my insides happy.  Eating yogurt and such and trying to make sure I keep something in my stomach even if I don't feel like eating.  I had the very bad idea of doing some yard work the day after exchange surgery.  Didn't hurt while I was doing it, but really stupid and boy was I sorry later on.  Like, I needed a new pain scale.  My PS not happy with me.   Lots of risks - infection, etc.  Had 100cc of fluid that night.  Now down to about 30, but don't think he'll take it out until I am below 20.  Went off pain meds 2 days ago, they were making me nauseous along with the antibiotic. 

Had started PT before exchange.  Look forward to going back to it, but my lesson this time around is to accept that it takes time to heal and I will only hurt myself if I push it.  Finished my paint by number - this was one of my strategies for getting thru the very slow days (since I am right handed and only had left side surgery, I was able to do it).  Ordered another one and figuring out what else I can do without straining the surgical side.   Not a sit-around person!!!   But it helps to read these boards and share stories. 

Hey fellow fighters, sorry I have been AWOL since 9/5.  For all who wanted an update thank you very much for your concern and prayers.  I healed very nicely after they cleaned out the infection.  In fact on Monday they removed both my tubes, staying on anti-biotics for an additional 10 day prescription for safety. 

My AWOL problem was not me this time.  Seven years ago I quit work to take care of my mother suffering from dementia.  At the time of my diagnosis I had to find a nursing home to take her as a private pay resident.  She has progressed downhill and has fallen twice busting her head and needing care.  I got a call last Thursday night she had fallen again and we needed to pick her up at the hospital and return her to the nursing home.  My husband and I heard from a friend of his that the home his mother was in had a death and they would be willing to interview us to place my mother there.  We visited and were very impressed, visited Saturday and Sunday and decided to move mom there, moved her in yesterday.  Good feeling about this so now I can start concentrating on me again.

Got to take my first full shower and it was heavenly. 

Lisa -  so much can happen in one week.  Sure hoping you can get those drains out soon.  I was surprised mine were ready to pull after having been infected.  I was draining slow but steady at least I knew they were not stopping up this time.  I definitely know you are going crazy with them in this long.  Smaller more frequent fills sound more manageable.  Sorry to also hear of possible chemo.  I made it through the chemo with minimal SE’s but I was not coming off surgery rehab.  I do have lots of faith in chemo after enduring the process.  I will pray your “cocktail” will produce few SE’s and eat any remaining loose cancer cells in the process.  Glad going back to work gives you a little bit of normal back in your life.

JennH – so glad you got to return to work as well.  Hope your visit with your BS was good.  Hope the swelling on the sides was just swelling and not a building up of fluids. 

KBeee – your life never slows down.  Sorry about the disappointment of not being able to attend/work the football game.  That is like losing a best friend.  I spent so many years supporting one group or another at football games.  My children seemed to be involved in everything and I wanted to be there to support them.  Hope the next several months speed on by.  I have been at this since treatment started in February.  I am hoping to be through by this February.  I didn’t ask many questions at the beginning but am asking lots of questions regarding reconstruction.  You will have to live with the results for the rest of your life. You need to post your salsa recipe for us.  Hopefully you got your wigs, have fun at your hair shaving party.  I had both of my daughters go with me to have my head buzzed, wig cut and shaped.  We took videos and then met all the men afterwards for a nice dinner.  Make the best of it.

 Aviva – good luck with your onco appointment. Did the underarm bulk ever go down?  I have the same issue and when on my side I feel like the 2 expanders are touching in the middle.  If I lift my arms and reposition them I seem to get release also.  I understand what you are feeling.  My BS is also sending me to a PT for LE she said it is so I can learn what exercises to do to help return to full range of motion and to prevent fluid build up even though I only had 2 SND’s removed.  It should only take 2 visits. 

Ndgrrl – hope the rads went well.

Babs – sounds like you are moving along as scheduled.  Glad you made it through your meeting ok.  I had my power port removed during the mx also.  I never had any problems with mine being in my chest.  I only used it to receive chemo, I used my arms for all blood draws but I could use both arms prior to surgery.  Now I guess I only have one arm for blood draws.

Wrenn – I hope the fluid slows down and you can get the drains removed.  I had mostly yellow by the time they removed mine but I had an infection at day 10 and the PS opened me back up and cleaned me up.  I got them out 7 days later. 

For everyone waiting for oncology visits and decisions my prayers are with you as you have to make these tough choices.

For anyone I did not specifically address I do care about your progress and hope everyone peace.

My onco appointment pushed back til Tues- but I gues its for the best since the oncotype test will be back on Monday.

PS says its normal for the te to be sort of near under arms. My left side is still a bit swollen from the surgery so thats where its more noticeable. If its the same when I see him next Thurs Im going to ask more specifically about the swelling. I think otherwise its how the te are going to be. Its not painful really, just --- odd

Wrenn – My BS never mentioned Triple Negative Breast Cancer to me either.  I had to ask him about it!  It was at my last visit pre-op when I said to him “you know, from what I see on the pathology report and researching what it all means, am I correct that I have Triple Negative Breast Cancer?”  To which he answered “yes” and I continued “so that means any therapy, should any therapy be needed, means I will only be getting chemo?”  To which he answered “yes”.  Grrrr!  Why did I have to ask him?  Why didn’t he just tell me and then tell me what it meant?  Why should I have to figure it out for myself and then ask?  I’ve said it before and I’ll say it again – it is our right to know everything and all our options before making any decisions on our care.  If we are not provided with the information, how can we give informed consent?  (I’m sure you all know by now this is a thorn in my side – I just don’t understand why doctors do this and how they get away with it).  Sorry to keep repeating the issue but it really makes me mad! 

I hope your MO appt went well.  I’ll be interested in knowing your treatment plan.  And to be completely honest….if I was your age I would not have had reconstructive surgery.  In fact, I know implants do not last forever – and when it is time for the ones I will be getting from this ordeal to come out….that’s it for me.  I’m not replacing them; they will just be removed and I’ll move on to prosthesis.  I still have quite a few working years ahead of me and I didn’t want to be bothered w/prosthesis for this time period but if the implants last 10-20 years, that gets me thru those working years and then I’m just not interested in doing it again.  Just my preference – it might be different for those younger than I and I respect their decisions whole-heartedly, just like I respect yours.  We all need to do what is best for ourselves. 

KBeee – LOVE THE PHOTO!!!!  Will look forward to the shaved pictures!  Strange, but you look pretty much like I expected you to.  Isn’t that bizarre?  You’re a very pretty young lady!  And you look great in that uniform!!! 

How much of a dent did you make in those tomotoes today? 

Thanks for sharing the info regarding your friend who was TN – it gives me some reassurance knowing one of you knows another person who has walked that path and came out healthy, healthy, healthy.  Thank you for that reassurance!

Honeybair – you keep talking about this itching.  Is it itching?  I have worn my foobs the last 2 days and today I was out of my mind and could not get out of work fast enough today to get home and get the darn things off.  I had described it as itching in the past but it’s not….what it feels like is that someone has put strips of tight tape on my chest incisions and it feels like it’s shrinking and I want to rip it off –does that sound like what you have?  Not only do I have that feeling when I wear the foobs in a tube top (with pockets for inserts) but I have the same darn feeling even wearing a simple, soft cotton shirt.  It is driving me insane and I don’t think I can wear the foobs anymore (and I hate looking like a patient who just had a BMX – even though that’s exactly what I am).  But I just can't stand wearing the foobs!  So….I took Babs suggestion and got some silicone inserts.  Not foobs, but silicone “increasers” – they are hollow and my plan is to use those in the pockets of the tube tops so that there is less pressure on my chest.  I’ll let you know how it works.  Oh – see….I cannot wear a bra yet because…..that’s right ladies, I still have tubes and drains!  I was told no bra until 10 days after tubes are removed so I bought some tube tops.  

Pam358 – It is strange how different doctors have different tests, regimens, etc.  But, I guess we’re all different which might explain some of why they are so different.  

I hear you about mets.  That’s my biggest worry as well.  I’m scared, I’ll admit it, that I’m going to hear it has spread to one or more of my organs.  But I have faith in God and ask daily for his Grace to live the life he has planned for me with dignity and courage.  Whatever that is. 

Jeannine – Boy oh boy, it is good to hear from you!  I was getting worried and was going to send a PM if I didn’t see any posting by week end.  So glad you are doing well and congrats on getting the drains removed – and I’m sure that shower rocked!  You sound good – I’m glad you got your mother settled in someplace you are comfortable with and that you can concentrate on yourself now.  We missed you!

Aviva – it’s probably for the best that your appt was delayed.  Get the test results first (are you sure the hospital got the right tissue this time?) and then meet w/MO – do it all in one shot.

I'm glad you were able to discuss the TE's with your PS and you know it is nothing for you to worry about.

Have you had any luck shopping for caps? 

NewHopeAndrea – I have had several discussions with my PS regarding the issue of keeping still to keep fluid output down.  I am in agreement with what they told me – there is no medical evidence to back that theory up.  I’ve twice during my recovery had to sit/lay with my feet inclined for 24+ hours to bring down unknown swelling since surgery in my feet/ankles/calves.  The fluid output those days was exactly the same as the days I go to work and do chores around the house.  There is no rhyme or reason on why it outputs what it does, why one might be high for 2 days then decrease but then the other drain goes up (discharge nurse at hospital told us the same thing – she said “don’t try to figure it out, there is no reason why they do what they do and you’ll only drive yourself crazy”.  Having had my remaining 2 drains for 5 weeks (5 weeks exactly today), I can attest there is no rhyme or reason……and as much as I want them out, I don’t want them removed just to end up getting fluid built up and then having to chance aspiration that could cause issues w/TE’s.  I hate these things, but I’d hate it more if I ended up getting them removed then having too much fluid and possibly getting infections.  Or worse yet, getting infection and having to have TE’s removed.  I feel for what you’ve had to endure – I hope my fluids just ease up for several days and I can get them removed and still be comfortable that something bad isn’t going to happen (know what I mean)? 

And I hear you on the yogurt thing too!  Tried my best but after 3 weeks, yes…that thing happened that is all too common w/some of us when taking antibiotics happened.  Just a little something to make my life more miserable – but we took care of that little problem and I still eat 2 large yogurts a day hoping to ward off that little evil from showing up again (I too have issues w/my GI from the antibiotic) – seems sometimes we just can’t win!!!

Oh – you made me so squirm with your replay of the tubes and the doorknob!!!!!  Holy S*** - you know I was so afraid of that it wasn’t funny!  I had my PS cut my tubes down (they were so long they would have hung below my knees if left to hang, for goodness sakes) at week 2.  I accidentally grabbed my belt (which had 4 drains at the time) and pulled down the night of my surgery in the hospital when going to the bathroom – so I have to say I perhaps was quite thankful for the long tubes at that particular moment – but at home (knowing I have been so incredibly careful at potty time since that little incident in the hospital) I was sick of them dangling all over and worried about…..DOORKNOBS!  I can’t believe that actually happened to you – you poor thing!  I would have had many choice words, yes, many very bad choice words would have spewed from my mouth – just because it was such a huge fear and can’t figure out why they leave those things so long – what is the purpose of having 3 feet worth of tubing??????

You really made me squirm, I’m not kidding.  Your story and Jeannine’s infection and surgery are the 2 things that worried me most and I am thankful nothing every came from them (and I’m knocking on wood they don’t since I’m still w/my 2 drains). 

Thanks for sharing your story with us.

Poodle_Mum - did you get a chance to search either BCO or Google on the breast massage?  Or did you find an interpreter to contact your BS to make sure you had the instructions correct?  I hope you find the answers you're looking for and I hope your surgeon takes the time to assure you about your concerns.

As always, if I forgot anyone it was unintentional and I’ll catch up on the next posting.  Congrats to all who have showered, and all who have their drains removed, and all that are on their journey w/Oncology and have their therapies in place (while some of us still wait and wait and wait).  Peace to all and God Bless.

Lisa

Poodle_mum – Please don’t get too upset by how things look.  I know it’s hard – we all do and we all understand.  Instead try to remember that Plastic Surgery can do wonders to “rebuild” us to give us back our self-esteem if the final results are not to your liking – but that breast was diseased and you bear the battle-scars of a fight you are winning!  Yes, the scars look terrible at this time, but when everyone is telling you “it looks great” – they are trying to reassure you that it is healing well.  Give it time and if after it is completely healed you still are not “ok” with the looks of it, consider having Plastic Surgery to make any corrections you feel you need. 

From what you had said on previous posts, it did sound like DCIS to me but I really know so little about this crazy world in which we’ve all been thrown into I certainly didn’t want to guess but hoped you would find out what exactly your diagnosis was.  As my doctor told me “if you’re going to have cancer, DCIS is the best cancer you can ask for because it rarely spreads and the survival rate is excellent”.  Easy for someone to say who didn’t just hear the words “you have cancer” – that’s the thought that winged thru my head at the time – but of course, she was right.  Unfortunately in my case, they had also found invasive ductal carcinoma.  Upon final pathology after bilateral mastectomy it was found to be much more extensive than originally thought – oh well, they got it out and I push on.  

Your description of what things look and feel like paints a difficult picture – I can see why this is so hard for you.  I’d be feeling the same way, I think, given how things are progressing.  But I am so happy you got some clear instructions and reasons on why you need to do what you need to do.  And since you had that “explosion” it is understandable you have reservations but you’re doing great!  You’re working up to what needs to be done so you just keep pushing forward.  And please don’t worry about sounding emotional – we might not say it and I can only speak for myself, but it all gets to me emotionally as well.  But when I feel like that, I remember that “my old breasts” were filled with disease and that brings it all home that I’m glad they’re gone!  These new things – can’t even call them baby boobs because they’re nothing but a little swelling at this point – will one day be as much a part of me as any other part of my body.  It just takes getting used to.  I’m glad to hear you say you’re not going to look for a while.  I think that’s a good idea; I have had to take that route myself and still after 5 weeks have not taken a good, long look.  I can’t, it’s just that simple.  I’ve glanced, of course, it’s an ugly site but it’s a brutal surgery so it’s not unexpected to see how it looks.  But I don’t like what I see, so I don’t look.  I will in time but I won’t push myself (what would the purpose be in that?).  So I really do understand how you feel because I feel the same way. 

And I don’t hear you complaining so don’t feel guilty.  You’re letting your thoughts flow thru to words to women who understand exactly what you’re going thru and that’s why we’re all here.  You didn’t get a free pass, dear.  You may not need to forgo the therapies we must but you certainly didn’t get a free pass.  In fact, your post surgical experience sounds so incredibly terrible to me I feel I’ve had a pretty darn easy time of it compared to what you’ve had to endure!  And my recovery has been slow, slow, slow – but I’ve had no complications like you’ve endured!  

I am so very happy you have a better understanding of your situation.  You did make the right decision with the mastectomy.  Your “new breasts” might not make you happy now, but remember they are still healing so give it time before you judge what you see.  It’s not going to be days or weeks; I think you need to view things more in months and months. 

You sound very strong – you’ve had a tough time of it so far but you forge forward which is what we all must do.  And remember you always have a group of ladies here to “listen” anytime you need to talk or vent or just let your built-up emotions out.  We understand and are here for you! 

Take care and keep building up to more and more massages each day.  Keep us posted on your progress.  My thoughts and prayers are with you!

Poodle I too took a better look the other day at the scars/incisions and it is pretty freaky. But its just 3 weeks out of surgery so that will improve, and like people say, the final result is months and months from now after exchange, so whatever- it is what it is. I read about a funny tshirt: Yes these are fake. My real ones tried to kill me!

So whatever is there is better than what was making me sick a few weeks ago!

I too, when its time in 10 years or whenever to replace the inplants will probably skip it and just go natural. Im almost 56, so feel ok about trying to reconstruct now.

I had an adventure.

Call me a dipstick or brave but I walked over (power chair of course) to the dollar store across the street. Average time for what I did would generally be 20 minutes tops (My poodle always has to inspect all the grass on his way to the store - according to Google maps which does not include poodle-time, the walk there and back is 10 minutes and you can go a heck of a lot faster in a chair). I went in, told the lady what I was looking for and she went and got it and checked me out. Total time from leaving home to returning? 1.5 hours - BUT - I did it!

I was really feeling the effects of things by the time I was 3/4 way home. I know, not exactly at the top of the list of things to do alone especially when I'm still having issues with light-headedness aside from the pain.

One more piece of news - tonight I will get my first full bath in 3 weeks! I'm excited. I'm not sure about the water temperature because my attendant knows where I usually like it set but they said the water cannot be hot. I'm a bit scared the water will loosen the scabbing and re-open the hole at my ribcage so I'll set aside gauze dressings before the bath just in case. I'm so excited about the bath! :-D Any advice on water temperature? One of the downfalls of a spinal cord injury. Oh well, that's life. :-D

Kbee - Yes, she did.  As far as supplements go, she recommended I take fish oil, a multivitamin and a mushroom combination that's called My Community fungi perfecti.  She also suggested I add turmeric (the actual plant, not the spice) to my diet, ginger (plant, not spice), garlic and asparagus when in season.  Also exercise and water, water, water for general health.  That's our starting point basically.  She's going to get access to my bloodwork and then suggest anything else from there.  A cool thing is, they have a naturpathic grant program that will pay 80% of the cost of the supplements, so that's helpful. 

Wrenn - are you anemic?  You mentioned your hemoglobin.....and that is very ironic!  Not 2 hours ago my husband and I were discussing my upcoming Oncology appt and I was telling him one of my biggest concerns w/chemo is fatigue.  Given that I've fought anemia many times over the last 10 years, I'm concerned with how chemo will affect that and just how bad fatigue will affect me.

He asked me what they would do if I am now anemic or if I become anemic during chemo.  I told him I wasn't sure, but figured they would probably give me IV's of B-12 or other B vitamins to combat that problem (nothing I've tried with nutrition helps and iron supplements upset my stomach too much that I refuse to take them).

So I wonder if you are anemic as well and if so, did your Oncologist suggest anything to bring up your iron before having to resort to transfusion?