Lumpectomy Lounge....let's talk!
Comments
-
Hi All,
I was wondering if anyone had their incision closed with super glue? I did and it's beginning to itch!
I second Pat's suggestion regarding the patient satisfaction survey. Fill it out! If you don't get one, call the hospital and talk to someone. The only way they know something is not working is to give them feedback about your experience.
Will be seeing the MO tomorrow. Hoping for a good pathology report! Fingers crossed and praying!
Take care!
123JustMe0 -
sweetmammaj - they put put you on a bus?!! (Extra hugs for you!) Forgive my laughing. The absurd becomes funny in these times
So I can be thankful for the friendly wheelchair escort to & from the needle loc.patrn10 - The more I reflect on my experience, the more frustrated I am about the surgical team's nurse. I assumed she was my nurse navigator, but now not so sure. She has seemed more to be the keeper of survey data. As a former nurse, I had high expectations of her listening and problem solving skills. But I found her to be the most out of touch person I have dealt with through this. The first time it happened was when I learned about the needle loc & was afraid. Looking back, she should have assured that I had something to calm me before that procedure. It would have made the whole day go better. On her post op follow up call, she was more concerned with "did everyone treat you well?" question than hearing about how rough the day went, and my emotional struggle post op. Grrrr! After I hung up from the call I realized the answer was "no, YOU don't treat me well". So now, 6 weeks later, do I let it go or go after it? I am concerned for others to have a similar experience. It could have been different. The next time around I disregarded her and managed my own care.
0 -
I would write up my experience. (What you wrote here was very good. Explain your frustrations as you did above. Copy and paste!) . Call hospital and find out who is in charge of patient satisfaction for the organization. Send your write up to them and request that it go to this nurse's direct supervisor.She needs some customer service, and compassion training. If you will have to deal with her in the future, request someone else. That is your right. I know we hate to make waves but patient feedback is very important to process improvement. Good nurses realize that patient satisfaction results good and bad make us even better nurses!
0 -
Horsegirl,
You have every right to talk to someone at the administrative level 6 weeks later! Unfortunately, hospitals are now being graded on "satisfaction" thus the question "Did everyone treat you well?"
You really should follow up on this to prevent other women (and men) from experiencing the same thing you did.0 -
Horsegirl,
Yup, a bus. I almost took a selfie while waiting on the bus bench, trying to look nonchalant-all surgical scrubbed and no makeup, holding my plastic bag with my bra inside, and hoping the wires don't come springing out! hahah! It is hysterical, when you picture it.
I agree that you should followup on the survey; getting those feelings out could not only help you with closure, but will hopefully improve patient care at that hospital.
0 -
LOL! There's a photo you could send to the customer satisfaction team!
Speaking of phones & selfies...I found having my phone close at hand during the surgery day was a comfort. I was texting some dear friends before & after procedures. It helped me feel connected & loved on. Was the first thing I did after that wire loc!
Thanks for encouragment - I'm going to follow up. I may do it directly with her first - difficult, but more my style. Went back & checked - she is my nurse navigator. They only have one
0 -
Thanks for the extra hugs everyone...I am feeling a little better today, despite the fact that I had a fairly sleepless night. The doorbell rang at 5 am today! Hubby jumped out of bed, not surprisingly (that was actually what woke me up, after not getting to sleep until about 2 am!)...it was just something phantom: has happened once or twice before (an electrical short perhaps? Sigh.
Anyway, I went back to sleep for a few hours and now I do feel better. Hugs from you all definitely helped.
JustMe: I did not have superglue but my incisions, especially the SNB, have itched quite a bit. I think it might just be a part of the healing process?
The Tigers, Peg?: Sorry about the year they are having...hey, you need hugs from me on that one! :-)
Sweetmama: a BUS? Seriously? No, I couldn't have done that....My only service complaint about the entire procedure was that I had to wait a LONG time for the wire insertion...it turned out that the radiology folks had called over to say they were ready for me and were told I hadn't arrived at the hospital yet, even though I had signed the admission papers and was sitting right in the waiting room. I did complain after about 45 minutes of waiting saying that I didn't expect the wait to be that long, and that I was miffed about getting there at 6:30 for nothing, etc. etc. I told them I was anxious and having to wait was making the anxiety worse...and I got an apology from the radiologist, his staff and the nurse navigator....and then when I was taken into room for wire insertion, someone was on the phone trying to figure out why they had been told I wasn't there when I was...So, in other words, they took even that relatively small issue seriously and addressed it right away. Put me squarely in the speak up if something isn't right camp, even if it means writing a letter afterwards.
But to answer one of Peggy's questions, one of my anxieties is that now I can't seem to get a straight answer as to status of oncotype test. BS had said MO would be ordering it, based on my pathology report and I thought it had been ordered. Apparently not yet. I called MO's office Monday to ask if results would be available at my next Monday apt., and got a call back yesterday with a sort of vague answer..."well, Doc would not necessarily order that unless you asked for it; but you can get one if you want. Why don't you discuss with the doctor at your appointment" Me: "YES, I want it, and can you please ask the doctor to review my file and see if we can make a decision about it now, especially given that it is a sixty mile drive one way to see him, and I would like the test before making a decision on chemo. Please let me know the status after you discuss or have him call me." So far, no call back. Grr....So, this leaves me in an (anxiety producing) 'pickle' as my son used to say: I want him to be assertive in treating this cancer, and that includes taking advantage of testing that I am a prime candidate for (as far as I can tell based on my perspective as a knowledgeable lay person). If he is the type of doc that would order a predictive test only if I asked for it, I am not at all sure he is the right doc for me. But it took a while to get this apt, and if I ask for a second opinion and/or go elsewhere that could really slow things down while I wait for THAT apt. I want to be able to look this doc in the eye and ask, 'given that I am estrogen positive and have no lymph node involvement, why WOULD You make a chemo/no chemo decision without ordering the test?' SIGH. I HATE WAITING and I HATE this f*())( ed-up disease. (and yes, I am a bit of Type A, can you all tell?)
Thanks for being there to all of you. I hope to pay it back and forward some day soon. xoxo
Octogirl
0 -
and sorry for the sort of swearing. I feel better afterwards, but it isn't a positive or respectful thing to do. Not going to edit my post, however, since it was honestly how I feel....I think I need a walk! :-)
0 -
SweetMamaJ, I am soooo not a Type A. I'm blonde (now with a bit of help!) and things just fall out of my brain. Way back when I was pregnant with #1 son 47 years ago, I started making notes with questions for my doc. He laughed but took the time to answer each one and on visits where I didn't whip out my list, he'd say No Questions? So I've continued it. Much easier with the computer. I write them down as I think of them. And it helps with the visit since it is so easy to get sidetracked and forget to ask something that really matters to me.
Good luck with your flight, DS's swim meet and just surviving!
BTW, I was required to have someone with me for my Lx. Thank heavens everything was in the same building!
HUGS!!!
0 -
Octogirl, Not a big offended by the swearing. Most of us have done so and will continue to do so coping with this damned disease. I would think that an Oncotype would have been a given for you. I did ask to make sure I got one. I wanted to make sure I didn't need chemo. If I did, well, I'd just cope like my DIL did with colon cancer. Anything to kill it. You shouldn't have to wait to talk to him at your appointment unless he feels chemo is a given and he doesn't need confirmation.
HUGS!! (And yes, all Tigers' fans need hugs and huge boxes of Kleenex this year).
0 -
Octogirl,
Thanks for your response regarding Super Glue. You are probably right. Just an FYI, my BS doesn't order the Oncotype either my MO does and I am going to ask her about it tomorrow. Even if she doesn't think it's necessary I am going to ask for it. I am also going to ask for a second opinion regarding my pathology slides just because 1) everyone can have a bad day, 2) someone always needs to finish last in the class, 3) I've heard horror stories about things being missed, and finally IT'S MY LIFE they are talking about. If the treatment is wrong where does that leave me? I am hoping for the best tomorrow but if I am not my own advocate who will be? I hope everything works out.
Thanks! ( I already had my walk this morning! Yay me 0 -
octogirl - swearing seems perfectly appropriate.
Your diagnosis says Estrogen + but your message said Estrogen negative. Isn't the Oncotype for E+ tumors? I haven't had one done. But this is the article I looked at. http://www.breastcancer.org/symptoms/testing/types...
0 -
Hi: Should have edited that post...not for the swearing but for the mis-type, yes, as my diagnosis says, strongly estrogen positive (97%). and yes, that puts me in the category that benefits from oncotype (estrogen negative would not, apparently). Edited to add: just edited the other one, so as not to confuse future readers. Thanks Horsegirl for pointing that out!
Yay JustMe on the walk!
Octogirl.
0 -
Hi - I'm a newbie. My head is spinning - in the last 2 weeks, I found a lump, went for a mammogram, had a needle biopsy, met with a BS, and I'm scheduled for a guidewire lumpectomy, sentinel node biopsy, possible axillary dissection August 14, and then 6 weeks of radiation. BS is calling in a prescription for something to numb my breast for wire insertion - anybody else have that? I wonder if I could convince her to give me a valium, too! The biopsy hurt, hurt, hurt!! It was a week ago today, and I'm still black, blue and green from the bruises. Then again, I've always been a wimp.
LX is on a Friday, BS recommended I take the whole following week off of work. Sound reasonable? And our bedroom is upstairs - did anyone have trouble with stairs post surgery?
Sure wish my surgery was sooner - waiting is rough, isn't it? AND Friday's my birthday........AND Tuesday is our 25th anniversary. Sounds like I'm having a pity party, and I'm really not. I'm really optimistic - BS is the best, we caught it early, Stage I or IIa. I'm surrounded by wonderful friends and awesome prayer warriors. Just scared of what I don't know. Now I'm just babbling, so I'll stop
Kathy
0 -
Kathy, Welcome. Sorry you have to be here but you'll find us very warm and supportive. Take a deep breath. Slow down. I think it's best that you have to wait awhile to have the lx. Easier to get your plans all set and to research everything you want and need to.
Just to make you feel a whole lot better, I was still very black and blue with hematomas for over 7 weeks from my biopsy. In fact it was so bad that some of the tumor board, not my BS, called for MRI since they thought my cancer was far worse than it was. So you're perfectly normal. Your biopsy shouldn't have hurt hurt hurt! That's what lidocaine is for.
I had lidocaine shots for the wire locators. They worked. They also worked for the dye for the SNLB shot.
Do ask for a valium or two. They won't make you loopy but will take the edge off and that's what you need. Also see if they give dramamine for nausea - that helps a lot, especially if you seem to have an upset tummy after surgery (worked like a charm).
Yes, taking at least a week off work is quite reasonable. If you can take more, do so. You need to rest to let your body heal. Gentle walks are good. You won't (and shouldn't) use your "bad" arm to lift anything heavier than a gallon of milk. You should do fine with the stairs. I took one pain pill in recovery after my lx because I thought I should. And then just Tylenol. I was tired but that was it. My bedroom also on the 2nd floor.
Friday of your surgery is your birthday? Damn. No hope of this being your best birthday ever but you'll have many more!!! I thought I was going to have my lx on my 69th birthday but it was 2 weeks later. You'll be fine going out to celebrate your anniversary. You may be uncomfortable at times but likely not in real pain.
Be sure to buy a front close soft bra (no underwires) or a Genie bra to wear for a week or 3.
Radiation is very doable. Just requires a scheduling commitment. Takes about 10 minutes for the actual treatment.
You are entitled to your pity party. We all have them. Rant and bitch away. We understand. I'm also a very positive person and know you'll find that again later today. Being positive is the best thing for you.
Please fill out your profile and make it public so we know what your diagnosis is, the treatments you will have, etc. and make it public. All of that information helps us help you!
HUGS!!!!
0 -
Peculiargirl - If anyone understands your spinning head - it's the ladies hanging out around here! I think there is even a thread called "CrazyTown!" We've all been guests there - probably longer than we'd like to actually admit! I can totally relate to wanting the surgery to go faster. When I was first DX I thought it was going to be a quicker turn around. I was amazed that my surgery wasn't until almost 2 months later! I didn't even get to see the surgeon until over a month post dx! I was going insane not knowing if I could plan anything! And now . . . everything seems to move in 2 week increments! Wait . . surgery . . . wait . . . results . . . wait . . . surgery . . . wait . . . I told my surgeon I'd like to cancel my subscription to the surgery of the month club! I guess we'll see soon! I had no problem with stairs or anything mobile post surgery. My incision is on top and I had no trouble moving my arm full range - I did not however have any nodes removed. If you can take the week off - that sounds like a good plan. I would take the week off if I felt like I could. I'm a preschool/daycare director and to be honest, the kids are the easy part of my job. The staff is doing a good job of holding things together but I don't feel like they quite share my vision and customer service. Every time I go back to work I spend the first couple of days cleaning up issues that really could have been avoided. Today I went in for a few hours simply to remind them I was still in charge :-P My best advice is to find things to occupy your mind and sort of transport you to another place for awhile! That's been the best thing I could do to take my mind off things and to keep me from talking to Dr. Google! He is not my friend! I'm wish you didn't have to join us but I'm glad you found us!
0 -
Hi Kathy!
Welcome to the place no one wants to be! It sounds like you are in good hands. The prescription for the wire placement is probably Emla cream which is a numbing medicine for the breast. I would definitely ask for a Valium if you think you will need it. The worse they can say is no, right?!
I had a wire localization prior to my lumpectomy also but I wasn't bruised from the biopsy which they for warned me about.
I checked into the hospital on a Thursday@ 0830. Wire localization 0930. Imaging 1030. Surgery 1230. Home at 4! I had no trouble with stairs or anything else.
I took the next Friday and week off. It is very doable and highly recommended. Some of the ladies her went back to work sooner and kind of regretted their decision.
Happy you have a great support group!
Sue0 -
Horsegirl - you are so right about doing things you love! That is the only thing that has gotten me through! My husband is not too keen on all the craft supplies I've bought! YIKES! I just discovered COPIC markers and indulged! It won't be pretty when that bill comes in! Your first experience sounds like the pits. My experiences were more reversed! My first surgery experience (even with the wire localization) was a good one. The second paled in comparison. I reported at 11 am and didn't go back to the surgery prep bay until almost 1:30. Surgery didn't start until almost 2:30 I believe. I almost felt like "let's try to squeeze one more in before we go for the weekend" The first surgery they gave me a nerve blocker! This one they said it was a less invasive procedure and didn't warrant all that overkill! I was all set to go with one anesthesia team and then the lead came in and said he was being sent home early and so and so was taking over. I don't think so and so even said one word to me! The surgical nurse had no personality - she seemed very competent but not friendly. She non-nonchalantly flung the "party hat" at me and said "can you put this on!" I did - one handed as the other had the IV in the middle of my elbow! At least my BS was wonderful as always! I guess that's what really counts! Hmmm . . . I didn't realize until now how cranky I am about my 2nd surgery! If I don't have to have another surgery I'm leaning towards forgoing any type of reconstruction and going for a tattoo to cover the scar! I don't want more surgery! Wow - I'm rambling! Anyway - guess I'll be looking for that patient survey
0 -
Pontiac Peg - Thanks for all your encouragement! You are such a source of stability on this board!
0 -
123JustMe - I have had super glue twice. I hate the way it pills the inside of my bra! This time I put a paper towel between it and the bra so it won't stick like velcro. I don't remember any itching from the glue - my boob did itch as it healed. I can't remember - how far post op are you? after about a week or so, when pieces started to fall off, I started putting a little vitamin e oil on it. (even a little vasaline). I'm also a big fan of essential oils - they keep me sane. I put a pain reliever mix over the cavity area and then I put vitamin e oil with frankincense all over. It seems to help with healing and overall feeling better. (not sure how my BS would feel about the oils but I healed nicely and he never knew lol)
0 -
SweetMamma - I can't believe your bus story! That is absolutely unbelievable! They had me on a gurney the entire time and everyone said "Guard this cup with your life - don't let anyone touch it much less breath on it" They didn't let me out of sight! Putting you on a bus seems so wrong! I would think there are too many chances of something shifting or going wrong! Speaking of cleaning - did you "nest" before surgery? Both times I reorganized everything I could get my hands on at home and work! It was insane! I never do that!
0 -
Hi Kathy, We're sorry you have to be here but welcome to the lounge! Yes, waiting can be the worse part, but 2 weeks will give you time to get a lot of your questions answered. I had lidocaine for my wires and the nuclear med injections. It wasn't so bad and I got to squeeze the techs hand.
I agree, the biopsy was a bit painful--the radiologist had to make 2 incisions for mine--and I was left with a huge hematoma. But a perk from the wire insertion was that my hematoma was pierced, and a lot of the blood was able to flow out. None of that hurt at all! I climb 2 flights of stairs to my bedroom and had no problem with steps after surgery. (My DH helped me on the 1st day back from the hospital because I was woozy from the drugs).
If you can, try to complete your profile as much as possible so we can better help you. You'll also receive info from this site that will be specific to your diagnosis.
There are quite a few of us who just had a Lx or is scheduled for one very soon; you are in good company with friendly people who know exactly what you're going through.
And by all means, keep babbling if it helps you to process the news of having cancer. It's not easy to digest in one sitting, and although the learning curve regarding all the terminology is steep, I think it's pretty fast, especially with the help of this lounge.
0 -
Octo - I'm glad you are feeling a bit better! It sounds frustrating that you are not getting answers and return calls! I wish they would just humor us a little! My pathology reports frustrate the tar out of me! They give me some of the info I look for but they don't correspond to the way I expect after reading the "Interpreting your Pathology" sections I've read! Sometimes I feel like they leave out information or make stuff up! For instance - on my last pathology it says Cribiform Type with Punctuate Necrosis - my surgeon said he'd never heard that term before! I wish I thought of comebacks faster because I should have said - "Well, did you ask what it means?" I always feel like I want more information and details than they want to give! Ugh - last night I broke one of my new rules! I couldn't sleep at all end ended up researching my pathology report and statistics again! Craziness! Overall though - I think I'm doing better at handling the wait this time!
0 -
Curious - any one else experience mild nausea and loss of appetite almost a week post surgery? Can it really still be lingering from surgery? It's weird but I think the discomfort and sloshing has made me loose my appetite! Weird!
0 -
THANK YOU, everyone! I'm not exactly glad to be here -- but glad I found you! Nope - birthday is THIS Friday, surgery is two Fridays after that. BS is out of town at a conference, or this would be OVER WITH by now. Well, at least the surgery part. Unless I need more surgery, right?
*blush* stupid question.......PontiacPeggy, I'd like to fill out my profile -- but all I know is BS said Stage I or IIa, Feels like a marble to me, but when I met with BS for biopsy results, she didn't tell me size.....or grade......or anything more than that. Unless she DID, and didn't write it down. While I was sitting there in a stupor, she wrote things down as she told me, thank goodness! so......I'm assuming I'll find out more when I go for my post-op visit, right?
thanks again!
Kathy
0 -
Kathy,
Ask for a copy of your path report from your biopsy! It's invaluable! Also, you may want to start a binder to keep everything in. There is information overload with this stupid cancer and it's easy to get distracted by all of it.
Take care!
0 -
Hi Kathy-
Welcome! I know you wish you weren't here, but we are all here for each other. I was one of those who had their LX last Thursday. I am recovering well. Just wanted to you know I did not have any cream or even Valium when they did my nuclear injections and locator. My BS has some reasons why she doesn't use them (who knows???) and it was manageable. So if they don't give you something worse case...you'll still be ok 0 -
PeculiarGirl, put down what you know on your profile or even what you THINK you know. That's fine. Many of us find that things change after surgery. Along with my IDC the surgery magically removed some DCIS that hadn't shown up. She was surprised!
And as 123JustMe said, get your hands on copies of every single piece of paper to do with your and your BC. Lab reports, path reports, post-surgery reports. Keep a binder. You'll be happy to have all that info at your finger tips. If it is online (like for your hospital), print it out. Paper is good!
The philosophy of my breast center was to make everything as non-painful and upsetting as possible. Want more valium? Fine. Here's how to turn up the heat on your gown. More lidocaine? Here it comes. That philosophy works for me and my surgeon was right there making sure I wasn't in pain. There's no reason for unnecessary pain.
HUGS to you all. It IS doable. Just not fun (because who wants to have surgery?).
More HUGS!
0 -
PontiacPeggy, I wish I was going to YOUR surgery center!! Thank you for your encouragement. I'm going to call the BS office tomorrow to see how to get a copy of my biopsy report. My blood work is online, maybe the biopsy report will show up there as well.
Kathy
0 -
PeculiarGirl, it is a great center. Please please please update your profile with what you know and make it public. Also include your city and state. You may find BCO gals nearby! That helps us help you.
HUGS!!!!
0
