Lumpectomy Lounge....let's talk!
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HI Bounce- good to see you tonight.
glad you set your radiologist straight-
next time you can tell her- I know someone who had the wrong site locallized so I am being extra careful and it does happen....
Time-out is really important before any surgery or invasive procedure (think biopsy). They go over your name, medical record number, date of birth and confirm the side, the site and the procedure using any x-rays or studies. The whole team agrees and in some cases the patient participates as well. Its required by regulators and is a safety prevention thats been in place since 2003 to prevent wrong site, wrong patient, wrong side type errors.
As you see from Lisa's post the problem started when they placed the wire in the area next to the benign lesion not the clip marking the cancer site. Everyone in the surgical team used that wire marker placed in another department under x-ray to confirm the site and so removed the area that was marked which was not correct.
The team has to figure out how they locallized the wrong lesion and did not identify that in radiology when doing the mammo films before surgery.
These bumps are the worst- hate that you have them too but I hope we both get rid of them quickly-0 -
Hi Lumpies
RedReading - yippee! DD is ok...whew...but ugh the suspense ..happy dance:)))
Bounce - right on...I remind medical team just where their focus should be...important!
Ugh, Lumpies that experienced so many unnecessary mistakes...crazy wrong no excuses ugh
so sorry
Kaye - yippee chemo done...rest rads will come soon enough...hydrate
Lisa - my lx&snd was about 6-7 weeks healing time post op MRI before rads...I took a vacation and regrouped:) everyone is different...follow your BC teams advice
Wyo - yeah, nurse warrior! Emu oil and 2.5% hydrocortisone and free boobing...air out that girl!
Map girl - pockets are full {{{squeeze}}} we Lumpies luv pocket parties)) yoga pants, soft front zip hoody, sparkle flip flops, warrior pedi, and lip gloss...u r ready girl...so now go play and soak in the hugs!
Had a memory making play date with my toddler GS...ahh the best! Think this summer we will try sailing&kayaking...think he us ready for outside activities...surfing skiing is another year away lol:)
(((Hugs)))
Cindy0 -
Surgery done, not sleeping but feeling good !! My surgeon said it all looked clean (yeah) but of course have to wait for path report !! Wore my scarf and painted on eyebrows they were over nice....would have let me had hair and make up !! Got some for the pain and it didn't make me sick yeah again. Non narcotic and it seam to work so far. I thought the drain would gross me out but it's not bad !!! Thanks ladies 0 -
Annika glad your surgery is over and you seem to be doing well.
Lisa- wow that is just crazy. So sorry you had to go through all that.
Red- glad your dd is ok. I think waiting is the worst- I feel for her, not sure why some doctors insist on making people wait.
I had my first ever mammo on June 26 and it showed something wrong, so I was scheduled for an ultra sound- The ultra sound came back saying benign. Luckily for me I had this feeling something was wrong and told the nurse I had a family history of BC and that the mammo showed something so I wanted further testing- Glad my doctor listened and agreed to schedule me for a spot compression mammo which showed something again that was cancer. The biopsy I had in July verified it was cancer. The ultrasound tech had not even ultra sounded the lump that was cancer. If I had not questioned my nurse and waited a year to go in as she suggested I don't know what would have happened to me.
Fast forward to October, surgery done, radiation done and I am finally relaxing a lil in all t his and I get a automated call from the hospital saying I needed to schedule an ultra sound this was on a Sat.
So on Monday I called the hospital to say what ultra sound and on what? Turns out that original ultra sound found a complicated cyst they want to watch every 6 months. I had no idea, no one told me I thought it was just fibrous tissue, I thought why if they were in there my lump was at 12:00 this cyst is at 11:00 why didn't they biopsy it or just take it out- what is the deal with watching it? If it needs to be watched every 6 months this can not be a good thing- grrrrrr... Would have been nice to be told and not have to find out from an computerized phone call from the hospital.
Do any of you gals have any cysts that have to be watched?
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ndgrrl
I have lots of cysts - I have been asking how radiation and Tamoxifen will affect them - have been told radiation doesn't make a difference (but if it makes the breast more fibrous surely it has an effect on the cysts?). Still need to get an answer from MO about Tamoxifen and cysts. Anyone else have experience with cysts?
annika12 - I am glad to hear you are doing well. Stay ahead of any pain and congrats on handling the drain. I was terrified of having a drain. Before my surgery I told the surgeon that I had to be wearing panties and socks during surgery. She said it was fine. Its one thing to have someone cut you open and fiddle around with your inside bits and its another thing to do it with nothing on! I needed something holding me together.
The nurse who told me to strip and put on the hospital gown was adamant no socks and no panties. So I told her my surgeon had promised me and I spoke to her very nicely so she went off and came back with disposable panties and socks. Good enough for me. I don't think anyone has ever thanked a nurse for a pair of panties and socks as much as I thanked that nurse. I kept telling her how much I appreciated it that she found them for me and how happy it made me etc etc.
RMlulu - Yesterday, after sleeping most of the day away I accompanied my daughter on an outing.
After about an hour and a half we found ourselves in an elevator. All of a sudden I am wriggling and doing all sorts of contortions and my daughter's eyebrows go way up and she says Mom, what are you doing?
In a flash my bra appears in my hand and disappears into my purse. I answer my daughter's question with a sigh of relief: FREEBOOBING! The elevator doors open and we step out with my daughter saying: You are getting weirder and weirder.
I was wearing so many layers of clothing no-one could tell so why not?
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bounce I can't tell you his many times I've done the same....nylons too !!!
ndgrrl - I am also very cystic part of why I had 6 biopsies and why I have done mammos for years before turning 40 !!! I have cut out food that causes cysts and I am also going to get tested for iodine deficiency for easier testing in the future. Getting poked by needles every 6 months doesn't sound so good Wish I could just have an MRI witch is what finally located where "my" cancer came from ( found in nodes first)0 -
After a lumpectomy I'm like 3 weeks into my lumpectomy, which was nov 11th, Is it normal for the breast around that area to feel lumpy? I mean I had my for oncologist appt two weeks ago and she said it's ok, it's just that it's a bigger sack from the removal, and it will heal in time. Just wanted to know did everyone else feel this.0 -
Bounce, glad your nurse was so helpful, and I need to say that mine was too. They let me wear my own socks and panties and she taped the crystal heart my DH gave me that morning to the inside of my ankle, under my sock. I'm so glad that you mentioned it because it is so easy for me to forget all the nice people involved and just remember the rotten ones. I'm going to make a list for me of all the people who were great and look at it each morning so that I can feel a bit more grateful for the good things that have happened since I got my dx. Thank you.0 -
Lisa -- I am speechless -- so amaZing that this could even happen. -- ((((hugs)))) -- I am sure they will treat you with utmost care from now on!!
Wyo -- I have one more chemo tx (well really two halves of one) and then rads at end of January. I had progressively worse rash each time, then severe hives from the Taxotere after Tx 3. Seems I am highly allergic, so last txt will not be T. Do you know if rads will bring back the chemo skin reaction? I heard that could happen. What do they think is causing your itch?0 -
Hello all! TGIF its been a busy week.
Went to the MO today- she squeezed me in so I did not have to wait til january. She asked about radiation and I said its all good except.....this bumpy itchy rash that is driving me nuts!! she gave it a good once-over and did not feel it was a burn but probably rad related somehow since its right in line with the field. Wrote me a prescription for hydrocortisone so I could have the higher strength- its keeping it "at bay" but still there. She wants no powder, no lotions just this and if not improved back to her or to the derm clinic.
Got my tamoxifen prescription and will be starting it today- MO was honest, said about 50% of her patients
Kim- I don't know if rads will cause a recurrence of the skin rx you had with chemo- I do know that a lot of the post chemo rad patients seem to have challenges with their skin throughout the treatment. If you have a good Rad center those nurses will be very vigilant about asking you about your skin and wanting to know ANY changes. I would tell them during the appt where they talk to you about your previous issues and I would ask if you could use hydrocortisone- mine said yes but I did not have the rash til last 2 days or rads.
annika- glad you came through surgery well and are managing that drain- get your rest and stay hydrated and don't wait for pain, be pro-active, even if its tylenol stay ahead of the discomfort as its hard to "catch up" if it gets ahead of you0 -
I have no feeling in the back of my arm .....will it cone back ?? Anyone else ??? starting at my shoulder going down to elbow , doesn't hurt, not "sleeping" just no feeling like numbed !!! Put lotion on my arm last night and noticed it0 -
Annika. I had numbness along the inside of my arm between my elbow and armpit. That has largely come back now. Had my lumpectomy and snb in August. Surgeon said it was from moving nerves to get at nodes, Ridley0 -
Hi Annika, I do have numbness still from my elbow up on the side and ito my top side back. I had surgery the end of August and still numb. Getting used to it now. Was a challenge for the first couple weeks trying to figure out shaving. Make sure you get an electric razor instead.
I have apt. with my surgeon this week as a f/up. Will let you know what he recommends.
Fur0 -
Hey Lumpies -- if any of you will be starting rads in the next month or so, I started a Winter Rads thread, and I invite you to join us: All Topics → Forum: Radiation Therapy - Before, During and After → Topic: Winter 2013-2014 Rads
We will continue to get through this together!!!!0 -
wyo - some of your post seems to be missing -
Got my tamoxifen prescription and will be starting it today- MO was honest, said about 50% of her patients
My mind keeps trying to fill in the rest!0 -
Where did my post go? hmp!!
thanks for the thread TeamKim0 -
Hey TeamKim thanks. I start my rads in January - 4 to 6 weeks. He won't know till he sees the pathology report. Nice to know I will be able to talk to others going through the same thing as I, at the same time.
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Thanks Bounce- must have cut my post off.
hey weird- it went away- what I was going to say was she said 50% of her patients have no problems and its like a vitamin pill each day and the other 50% have one or several side-effects. Took it last night and went to bed so nothing yet to speak of0 -
hi all I got a drain question !!! Surgery was Thursday now Sunday my drain doesn't seam to drain !!! I feel fine , no swelling , pain or bruising but I'm not due to have it checked or out of until Friday !! Tried to "milk it" but nope .....there is a tiny bit in there so not all dry !! I'm also a bit worried to mess with it to much , I had a reaction to two antibiotics so I'm off them my doc said to be extra careful and keep an eye on it.0 -
Annika - call your BS first thing Monday and ask! I did not have a drain...hubby has for other surgeries...yeah I milked them, but we had a visiting nurse to keep an eye on it. So call ask or drop in...no need to take a chance. Sending confident healing thoughts.0 -
hi there, tc today from surgeon 1 wk po L lumpectomy DCIS, of the "correct" lump as some of you remember from my initial post and experience from first surgery ( wrong benign lump removed initially). Lymph nodes negative as found out after first surgery. He tells me that margins were clear but there is a small area of invasive cells, less than 1cm (.6cm). Sounds contradictory to DCIS with clear margins. If its invasive then not in situ, right? And not stage 0 as initially explained? He didn't say anything about change of stage on the phone but said we'd go over report and questions in more detail on wed 12/11 at surgical follow up appt.. It may change treatment and I should now see a medical oncologist as well for possible chemo in addition to radiation. he said because I am young (53.. not so young! but I appear and look younger i guess and I'm pretty healthy and in good shape, other than these stupid lumpy breasts) also it's a small invasive area so he's not sure what they would recommend regarding medical treatment. Ok so a little explain here is needed....DCIS stage 0, s/p lumpectomy with clear margins, no lymph node involvement but also IDC in same lump?? What's small invasive area as opposed to large invasive, invasive at all sounds bad
Of course I called him back after I thought of many questions but he was in surgery and would get back to me today. He is always good about returning calls ASAP, especially with what happened to me and all with the "mistake". Also have a call in to the nurse navigator. I feel like I'm in this medical hamster wheel...and I'm just starting...not a good start though.0 -
Hi Lisa,
How are you feeling? Are you doing ok po? Would you need chemo with no lymph node involvement? I am thinking no.
Take good care!0 -
Hi Everyone Got my oncotype score back was a 12 NO CHEMO! Thank the Lord! I read and feel so sad for the women who are taking it, looks like it takes every bit of life out of you some days. Plus I watched my mom go thru it 22yrs ago I would of been the weakest link if I had to do this, and know I would probably would have became a hermit during that time. My initial radiation setup for treatment is Thursday, I told them the sooner the better, just want to get this all over with. I will than be on Tamoxifen after radiation for the five yrs. Pray I remember to take this pill, because I'm bad with taking any type of oral medicine. I also set down with the High Risk counselor today, and did the Brac 1 & 2 test, My mom will take it also. so sit and wait on that if I don't have to pay to much out of pocket for it, hope insurance do cover it.0 -
Sloyd66,
Congrats on the super good news!!! how many weeks long is the radiation ? Let us know how everything goes Thursday.0 -
Hi Furfriend2,
Yes I am so happy and so is my family. My radiation will be for 6wks, and tamoxifen is five yrs. I'll keep you posted.0 -
Hi Lumpies
Sloyd66 - yippee Happy Dance...:) Ooo who a 12! On to rads...you will rock laser tag! Remember to hydrate, hydrate, hydrate...it makes a big difference. Check with your RO on recommended skin care...hydrocortisone,emu oil, aloe, a soft cami, and free boobing. Also, don't shave that underarm...yes there will be a mouse there but no skin irritation. Used Dove soap, Toms deodorant on the other side, watch out for skin in skin touching rubbing, eat well, extra protein, did I say hydrate and free boobing...there is something oh so soothing with complete exposure...nothing to rub or stick. Arrive early and get your mind in the zone before jumping on the table...zip zap each field healing light was on for less than 20-25 seconds doable. I made silly stickers ...does radiation make my butt look bigger, sharpie figures dancing around tats, praying...you get it. Yeah, the first time I really wanted my mommy, but could not figure how to jump off the table so just laid still...did demand RO techs to show OFF button more the daily grind ...you will do great!
Lisa - how's it going..,any word from BC team...still so frightening mistakes ugh speeding healing mibd&body gentle (((hugs)))
Annika - the drain? Hope you got an answer.
TeamKim - yippee, you got the Winter Rads thread going)) keep us posted. Remember show&ask every Mon/Fri had team check my skin. My RO prefers the 28 full with 5 boosts said she gets the best skin results less greys 1.9 each day...so ask why...RO should be forthcoming on why...I took the info from this site on protocols and we determine what was best for me...Hydrate especially if fatigue starts . In your pocket!
Lumpies be sure to gentlly brush vit E oil on incisions to soften insicisions scars. Also, your MO may give you a vacation break and NOT start HT until 1 month after rads completed ...really helped me))
(((Hugs)))
Cindy0 -
Thank RMIulu,
Yes! I'm ready to finish this thing off strong, then get to moving on to the hormone therapy and get that over with.0 -
I just had my follow up with my MO last week and looks like I will get a break over the holidays to recover from my 10 weeks of rads, so I don't need to start Tamoxifan until the new year starts. Yeah!! Also had my follow up with BS today, and looks like I go for mammo in 6 months. (And possibly MRI if need be, due to dense breasts?) What a relief, I will get to rest and recover over the holidays! Looking forward to it0 -
I get a vacation. Op was on Nov 28th rads start in january
I will listen to all your advice Cindy. My BS said aloe. Lots of it. I don't use deodorant (I'm lucky that way) so that's no problem. My biggie will be hydration, cuz I don't think you mean beer or coffee or Pepsi, do you? Probably that water stuff that I hate so much. Blech.
Sloyd I think you are going into this with a great attitude and hope I am as strong when my turn comes. So far no chemo for me either.
Lisa I have both, dcis and idc, in the same area. My DD is an RPN and initially didn't get it either. But after some research said, ok I get it now. I'm not sure I do, but I feel better that she does. Lol. So I got me lumpy, next rads. No hormone suppressors tho, cuz I'm 56 and almost done menopause. Note the almost, cuz the hot flashes and night sweats are still going strong. My DH hates it when I start stripping down in the mall. Lmao.
Good luck to all as we approach the next step in this journey. {{{{huggles}}}}
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Lisa, I was diagnosed with IDC and then surgeon saw another tumor right next to the original tumor during surgery and the second tumor turned out to be DCIS. I had to have a second surgery because they did not get clear margins on the IDC tumor.
I had no nodes involvement but MO was considering chemo because of the size of the IDC tumor, 1.7cm but when oncotypeDX came back as a 12 she said no chemo.0
