Lumpectomy Lounge....let's talk!
Comments
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O darn - I forgot - I made it to the P!NK concert last night. She is unbelievably incredible. If you ever get the opportunity, she is worth the money. I am suffering today tho. Everything hurts. First real trip out since the lumpy and it made for a long day!. Still smiling about it tho. :-)0 -
Red. That's awesome that you made it to the PINK concert. Relax today. Re bras from your last post. One of the bras that a lot of women on the diep reconstruction board are wearing is the Bali 3484. Wirefree and seems soft all over. Sized in s/m/l/xl, so a little forgiving in sizing. I found them at The Bay, and they were on sale, so bonus! Hope your daughter gets good news. Did you do genetic testing? They did it for me right away. Both my grandmas and my mom had bc.
Ridley0 -
I have surgery on Thursday the 5th !! Did any of you ladies have chemo before surgery?? Silly but one of my biggest worries is no makeup and no hair ...wig or hat
Will they let me wear a hat ?? What if I "paint on my eye brows" ?? I have never cared about make up or hair....natural all the way...until cancer now I feel naked and uncomfortable without I know silly......0 -
Annika it's nothing silly about that! You need to be able to feel beautiful inside and outside during this ugly time. I'm with you.. Ppl say it's vain no it's not vain to me.
put your makeup on and hat...0 -
RedR,
All the best on your daughter's results.0 -
Hi Lumpies
Ok thread on 2 pages will miss a lump or 2, but 1st yippee on low oncotype ...:D no chemo whew!
RedReading - rock it...Pink concert Ooo who
))) afterglow
Annika - ask...wear your hair, eyebrows, and lipgloss! It will make you feel better that's important I wrote on my toe nails ha ha! We will be in your pockets...just watch the twirls
Sorry to hear so many have daughters in suspense...ugh this c:( my sister and girls are on 6 mo watch...praying it ends with us...enough lumps.
Sin - yeah, infection under control...out of town, but on top of it!
Excited...Thursday is playdate with 2 1/2 yr GS...visions of sugar plums and blowing bubbles and hard core full on playtime...my dad gets his pacemaker at the VA 2 blocks away so 2 special men))
Ok, pocket party time...making cakeballs&bubbly!
(((Hugs)))
Cindy0 -
Aviva5675
Thank you very much! I appreciate it! Hope you have a great day!
-Nancy0 -
mapgirl12 - AKA Nancy - hope you are catching your breathe, asking questions, and soaking in time with family and friends. We will be in your pocket so make sure it's big
(((Hugs)))
Cindy0 -
Red saw Pink- yeah!!! glad you got there there is always the next day to rest up.
Siniberry- you will know so much more once you can sit down with someone and get the "skinny" don't discourage your son- many surgeons feel that with very small cancers the cure IS the surgery but the chemo/radiation are extra insurance it does not spread or come back. Its like a belt and suspenders. My radiation oncologist told me "you realize your surgery did the work" hmmm why all those zaps?? Anyway- you can explain more to your family and research more yourself when you have more facts and details.
For the person asking about wearing a hat- If you go to a really open-minded place they may let you wear it with your OR cap over the top but lots of places are very specific about street clothes and belongings in the OR and would want you to take it off before you actually roll into the OR. If you are self conscious by all means wear the hat in pre-op just give it to a family member so it does not get lost.
over and out0 -
Sorry to be remiss in responding. I talked with my surgeon today and explained what was going on with the seroma. He encouraged me to go to a local surgeon but left it up to me. He said if the liquid remains clear, no redness/change to the area or fever to indicate infection and I am not in pain, I should wear a compression bra or a support bra with socks or a towel to push on the seroma so it can't fill up again. I am to encourage the liquid to get out and keep pressure on it. I am scheduled to see him Dec 16. I feel better having talked with him.
I had a rather large lumpectomy or as my surgical report said "partial mastectomy". That and having radiation leads me to believe I am still healing from the inside out. Time to start thinking about filling in that big void with fat. Any thoughts?
wyo - I have printed your instructions so I can reference them easily. Thank you thank you!!!!
I'll try to be better about keeping you posted.
I thank you all for your sage advice, prayers and encouragement.
((((HUGS))))
Cakes0 -
So glad to see you back Cakes. Also happy that you contacted your doc and that he had advice that made you feel more in control. I think that's the worst - the total lack of control we have in dealing with any facet of this. His advice sounded good to me but I'm not a medical person. From what you said though, he didn't sound unconcerned or the opposite of overconcerned. (One makes you feel stupid, the other makes you panic.) He sounded kinda down to earth. Hope you are doing better soon and that the incision decides it wants to be closed up again. {{{{gentle hugs}}}}0 -
Thank you so much RedReading. I have been told by my numerous physicians (you know the med onc, gyne, internist, rad onc, blah blah blah) that I have one of the best surgeons in my city. Funny, the surgeon he trained under did my best friend's BC surgery in Chicago 15 years ago. I am comfortable with what he told me and I am fully ready to go to the ER if necessary.
As my DD tells me, one thing after another but you can handle it. I tell her I am a lucky girl. And so I am.0 -
I have a phenomenal surgeon, vascular surgeon (Bleeding disorder) and ob/gyn….I met the oncologist today. Started with "I make the decision about your treatment." then questioned my vascular surgeon's decision (he has been my doc for 23 years and this is one of my buttons) and then I mentioned that I was not willing to take tamo. She then went through the other options all blocking estrogen. I re-interated that I am not willing to take estrogen blocking meds for 5 to 10 years, have my ovaries removed, or some shot every month due to blood clot/PE SE she would not discuss any other options. I offered up that I am willing to go through chemo therapy (I know there are significant and long lasting SEs) instead she was not happy.
I saw my surgeon after that and he asked how my visit was with on onc. I mentioned the issue with the estrogen blocking options. He listened then mentioned that a chemo therapy would be an option. I agreed and asked him to mention it.
I am not sure if I should see another onc or see how it goes.
Sincerely,
Nancy0 -
Hi Nancy, I haven't even met mine yet, but I hope that he/she is cooperative with my doc, my surgeon and myself. I think timing is important though, if you go for a new oncologist, won't it take quite some time? On the other hand, your comfort level with your team is important too. There are some ladies on this site who have some medical designations, I hope that they will weigh in on this.
I'm from Canada and we have no choice on our docs - well family physician yes, but none of the others. I met my surgeon for my first consultation the same moment he gave me my results. So if I get a doc I don't like...
But welcome to the site. The ladies here are great and very caring. You are in good hands here.
Deb0 -
map girl -- I have been hanging on the October chemo thread, and there are a few gals there who changed MOs -- some even after one chemo treatment. You need to feel comfortable with ALL of your team -- your surgeon might have some impact, but if not, then maybe see what your vascular surgeon would suggest as a different referral -- at minimum for a second opinion. You also don't need to be getting mixed messages. Peace of mind is super important, and I think it is a bit of a red flag to be running up against issues already.0 -
cakes- so glad you checked in and your doc spoke with you and there is a game plan. always reassuring when they tell you to follow your intuition and don't tell you do this/do that- whatever you do sounds like your doc is supportive.
Nancy- we are fortunate that in the US for most health plans- we still (at least for now) have the option of changing physicians when it is not a good "fit" as Deb pointed out some of our breast cancer friends from other places in the world don't have that flexibility. If you got a bad first impression don't ignore it- after all is said in done this is the specialist you are going to be seeing over time. Your surgeon is primarily post-op follow up. Have not seen mine since 1 week post surgery and don't plan to. Ob/Gyn will follow you for those types of issues i.e well-woman visits annually etc. Find someone you "click" with and don't look back0 -
Wyo & TeamKim, thanks for weighing in on that for Nancy. I wanted to say hi to her and let her know she wasn't alone, but I am obviously the wrong person (Canadian, eh?) to be advising her in this matter. Anyway, welcome again to the lounge Nancy.
Wyo, Cindy, Ridley, Cakes - YES!!! I made it to see P!NK! oooo but I suffered on Tuesday. Can I say it was worth it - absolutely, without a doubt! She is phenomenal, the show was great, she actually had tears pouring down my cheeks during 3 different songs. Songs I know and have never considered crying to. Worth every penny and the day on the couch afterwards.
Ridley, thanks for the bra advice - off to the Bay tomorrow. No genetic testing for me. Just the girls. We have the appointment tomorrow morning. Thanks for your concern.
Furfriend2, we haven't met, but thank you for your kind words regarding my DD.
Siniberry, how you doing girl?
Okay, so if there are any of you not doing anything at 10:15 tomorrow, i'll be wearing a smock with big pockets again. Jump in, we're off to the doctors. (I remember the clean up routine Cindy, twirl and voila...)0 -
Wyo, TeamKim and RedReading Thank you all for the response! I appreciate it! You helped me clear my thoughts on the topic. I am going to call the vascular surgeon today for his recommendation!
Thankfully the BCBS program we have at work is wonderful.
Thank you again for the support! I really appreciate it!
Sincerely
Nancy0 -
ok I'm new here. Here's my story so far with BC and lumpectomy. Dx oct 18 2013 after aspiration that was assumed to be benign like the others that I have had in the past, but L 2:00 position lump came back with BC. US core needle biopsy done oct 23 with stage 0 highgrade cancer (1cm). Saw surgeon 10/25, MRI done with no further lesions found. Surgery for lumpectomy and SNB 11/25. I have had 2 other biopsys done in the past, all benign, one R and one L.
Well....this is where it gets crazy. 24 hrs after surgery I could remove the bandages and shower. Glue was used on the incision. Well when I looked at my incision I saw the incision on the top of by breast and also under my arm (SNB). Well the one on the top (12:00 position) did not look right as it was supposed to be at 2:00, more under my arm. As Fear ran through my body and while shaking I called the doctors office and left a message that the location of my incision didn't look right. He called me back and stated that it looks like I was right and that the wrong lump was excised, a benign lump and not the cancerous lump was removed. I had to have surgery 1 week later, just this Monday (12/2) for lumpectomy, again. SNB was clear but now have to wait on margins of the "new" lumpectomy. Hoping, hoping, hoping its clear otherwise I guess that would mean ANOTHER surgery. But thinking positive. Now I have 3 scars I stead of 2. Actually the scar under my arm- from SNB is more sensitive that the others and thicker. And Zthe new correct Lumpectomy incision is larger than the others (approx 3"). I'm actually hoping he took out even more extra tissue to ensure clear margins and limiting the chance of another surgery. There were mistakes made in many levels as he admitted. It is a well known facility in my area with a good reputation and I trusted him. The case is in review as this is a serious mistake for the facility. I am getting over the shock of this medical mistake and just hoping for good outcomes.
Has anyone had any kind of experience like this or has heard of this, surgical mistake for wrong lump excised? Crazy huh?
Return to doctor 12/11 for follow up but he said he would call me as soon as he gets the results of pathology and margins
Lisa0 -
welcome Lisaj, what an awful experience. Please hang in there, and positive thoughts for good path report. I had a 2x biopsy that showed dcis in one area and the other clear. When I had my lx the surgeon also removed the negative spot. That came back with a larger invasive tumor! Had bmx 10 days later. The biopsy needle just missed the invasive tumor. Luckily he removed it anyway during lx.
You have come to a very supportive place, lots of people who have gone thru a variety of weird things...good luck !0 -
You are so right,my husband and i had a consult with a oncologist ,that my b surgeon,had talked to about me.We met with him,and didnt understand anything he was talking about.We both said in the car,did you understand what he said.Went back to b surgeon,and told him.He said try another one,and if that doesnt work,we will get another one.That made me feel good.I just loved the one i got.So find one that you like,i did.Thanks for all the valuable information,that i have recieved on here.Finished my last chemo,last Tuesday..going for my 6 month mamagram tomorrow..then radiation will follow.0 -
Lisaj514, I had an "interesting start to my BC journey as well. Something found on mammo on 11/15/12, had ultrasound. No word from anyone for three weeks. I finally called my ob/gyn and after two failed attempts to talk with her, had the nurse read the report and was told to see surgeon. Went to surgeon who scheduled biopsy - they unable to locate the tumor. Sent to larger facility 100 miles away - they do biopsy - comes back as BC. Schedule surgery at local hospital (mistake). Go in for surgery on 12/26/12 - they again can't locate tumor. Get out of recovery and drive, that same day, 100 miles to see a surgeon at larger hospital - who of course wants to run all kinds of additional tests. Two months after initial findings on mammo - I have surgery #1 (or #2 if you count the fail right after Christmas) Two weeks later I'm told I need an additional surgery to get larger margins around DCIS, which made up most of my tumor.
So three months passed before I knew my plan - and aside from losing 30 pounds in those months nothing about it was pleasant - but I can assure you that once you get everything in place your life will return to "normal" and you can breath again. Everyone here told me (and of course at the time you can't believe them - sorry ladies) that everything would work out and once I knew my "plan" I would feel much better.
Wishing you a quick resolution to your situation. Believe it or not things will improve (even if you are unfortunate as I was to be blessed with a blood clot and a staph infection as the added bonuses - I can actually joke about it all now)
Best of luck to you - Kris0 -
Wow! Some of you Lumpy Ladies have been through hell! I can't imagine finding out they took out the worn tumor, couldn't find the tumor, etc. When I had my lx a wire was inserted into the tumor by using ultra sound and mammo to make it easier for the surgeon to find. The surgeon (a partner of my surgeon) placed the first wire not in far enough and the second too far. I think that is why my margins were so wide. The original tumor was 1.97cm but so much more tissue was removed.
It really is so important to connect with your MO. I love mine but couldn't stand her staff. I notice administrative problems and interestingly enough my MO is moving practices for that very reason. I will be following her.
Pocket party? I'll be there and bring the appetizers.0 -
First I want to remind everyone during surgery AND recovery the SCD machine (sequential compressive device) is not an option! If you are in bed at the hospital the SCD should be on. I have had blood clots since I was 23. Then had another blood clot and a pulmonary embolism while on blood thinners. Unfortunately they did not find the clots for 2 weeks and now I have scar tissue which blocks the flow of blood out of my leg and to my heart. I wear compressions pantyhose ALL year round.
Ok I am done lecturing!
Second I called my Vascular Surgeon and told him about my onc appointment. He called me back in 15 minutes and I have an appointment with the head of onc on Tuesday. Thank you for all of your support.0 -
hi all-busy day on the boards
First things first- Lisaj- As a surgical nurse-administrator I am so disappointed to say that what you experienced is called a surgical "never event" meaning it is not supposed to happen- also referred to as a surgical verification error. I noticed you are in the State of New York and as your physician said its a "big deal" its also reportable to the Joint Commission which is the organization that accredits hospitals.
You say has anyone heard of this- sadly yes this does happen despite site marking, radiographic imaging etc. In your case it makes me especially sad because you had to undergo another surgical procedure and anesthetic. In addition you- not your team caught the error- I suppose once the benign pathology report was given to the surgeon they would have realized something had happened.
I am quite sure everyone there is running around doing root cause analysis and trying to figure out "what went wrong". If you would like to message me privately I am happy to discuss this in more detail with you.
map- you go girl with pushing the SCD machine- yes its bulky, sweaty and uncomfortable and a pain when you have to get up but all of that beats a blood clot any day of the week.
I am still one itchy mess- its amazing how itchy these little red bumps can be- I went through radiation without a mark on my skin only to have these itchy bumps erupt on the next to last day and they are still going strong- lots of oil and its still waking me up out of my sleep.
See my MO tomorrow and find out about tamoxifen.0 -
yea had wire localization too, but in the wrong lump as found on mamo on day of surgery. I have(had!) 2 clips present. One from a benign lump (years ago) and recent cancerous lump. So the easy one to find was located on mamo and wired prior to surgery...but wrong one. The hardwr one to find, under my arm was not seen on mamo that day. If theynhad asked me i could have pointed it out. i was marked prior to surgery but only on the side and not in the specific spot. they really should mark the exact area. my lump was not easily felt. please girls ask to have your side AND Lump location mmarked. Isthat possible? maybe they should do this regularly. They asked my name and birth date hundreds of times it seemed like but not "where is your lump". i couldhave told them 2:00- go there!! Unbelievable!0 -
good luck wyo. Thanks for your response. See your inbox.
How soon after xl did most of yiu start radiation? Want to get this started with and over with. Know I have to wait maybe 4 weeks. More waiting, ugh! We have become pros in waiting.0 -
HI lisaj-
I actually started radiation pretty quickly- would have started within 2 weeks but I had to speak at a conference and they had someone finishing a 0730am time-slot so we pushed it back. Surgery was 9/30, visited RO for consult 10/16 and first rads were 11/6. I could have started wk of 10/29
As far as site marking- thats a tough one. Site marking really only confirms laterality i.e L or R- the mark is supposed to be visible after prepping and draping. There is controversy about marking the "exact" area and the incision may be smaller or larger depending on the type of surgery and what they are doing so you don't want false confidence either. When you have a wire- that is supposed to be a confirmatory "mark" as well and they should use your radiographic imaging during the time-out or "surgical pause"0 -
Just a quick note to let you all know that my DD is ok. Idiot doctor made us wait 3 days to hear cuz he wanted to tell her in person. He also said "its your mom with bc Jenn, not you". I'm spitting mad. Same doc who gave me my dx on a phone message at work. GRRR.
Lisa, so sad to hear about your trials. So glad you noticed something was wrong. Kkuziel same for you - holy cow, is this an epidemic of cancer misjudgements?
Nancy, glad your doc was on your side. You'll feel better with a team you can trust.
Wyo, what's with the red itchy bumps? Is that a side effect? Must feel awful. ((gentle hugs))
Night night all.0 -
RedReading - Glad to hear your daughter is OK - remember at this stage that is the most important thing.
wyo - what is a "surgical pause" or time out? By the way - I too have some little bumps that itch like crazy. Its really tough not to just give in a scratch them with my nails! I am trying to rub them through my T-Shirt.
When I got my suspicious US I read it all and saw that I had a cyst at 10:00 and a lump at 11:00 o'clock (which didn't show on mammogram and couldn't be felt by anyone).
So when I went to have the TruCut Biopsy done - I went into the room and said to the doctor who does it - hello - I have a cyst at 10:00 and a lump at 11:00 - PLEASE MAKE SURE YOU BIOPSY THE LUMP NOT THE CYST.
She looked up from writing in my file and gave me the coldest look and told me she knew what she was doing and where to biopsy and I had no need to remind her of such things.
You know what? I didn't care and it was so totally worth getting the little lecture to know she was now super aware of the two areas.
And she was the same doc to put the wire in and I reminded her again with a huge smile even though I was terrified. That's right - make the person who is about to poke a piece of wire into your breast cross just before she is about to stab you!
Second time reminder she just smiled and nodded reassuringly at me.
Why am I telling my story? Do I think it was Lisaj's responsibility to get the right lump removed? 100% - definitely not. I just think for all the ladies reading Lisaj's story - if you know about other trouble spots point it out at every step to every body who needs to know. Even if it pisses them off.
From reading BCO I am sorry that I didn't ask them to do a FNA on the cyst while I was there - my boob would have been numb from the TruCut Biopsy anyway.
Lisaj - you sound very calm for a person who had to endure what you went through. I know that hospitals make mistakes but some things really shouldn't happen as wyo explained and I hope you have made it clear to the hospital that you expect some form of compensation.
Its more important for you to concentrate on being happy and getting healthy now than suing - but if you can do both without compromising your health - go for it!0
