Lumpectomy Lounge....let's talk!
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Hello Whattodo123, I was diagnosed in March of this year, I had a lumpectomy on May 5, 2017. I did post earlier about my experience and I will share some thoughts with you. I found this site by accident and it has been a blessing. I have read pretty much every post on this feed to learn as much as I could. These ladies are so warm, loving and helpful. I think my finding it wasn't an accident but a godsend! It's sad what brought us all here but together we are stronger than any cancer! My surgery was exactly 7 days ago, I showered within 24 hours and was told to use just soap and water, not to let water hit directly on breast, no deodorant or shaving. I used pain pills for the first 2 nights not because I was in pain but i feared the pain would start. The breast incision is around my areola since my tumor was at the 12oclock position. I get phantom stabs there from time to time but it's quick and last a few seconds. The incision under armpit where they took out lymph nodes, 4 of them, is where I find the discomfort. It's not painful, I can lift my arm, it's just when clothes rub the area it's bothersome. From time to time I think it's swollen so I ice it. Bruising is fading. My tumor was 1.4cm, I'm a 32D size bra and I notice no difference in size. That may change after radiation. The first few days I went braless, but after seeing on here some wore tight fitting cami's even to bed, I tried it and I felt much better! So I highly recommend doing That! Good luck!!!0 -
I had a lumpectomy on March 30th and a re-excision on April 17 that took much more tissue, all the way to the chest wall. The first surgery was a snap. VERY little pain. I was out taking a walk 2 days post-op. The second surgery, not so much, because of how much more invasive it was. The pain just subsided last week, a little over 3 weeks post surgery. However, by the end of the day, I'm still have some discomfort along the incision line, where there is quite a bit of puckering. Today, I'm not feeling it as much, so it must be getting better. The incision near my armpit for the sentinel node was tender for a bit, but I have no pain or discomfort there anymore and the incision looks great. I wore the surgical bra for several weeks, just because it felt better, especially at night. After the first surgery, I took NO pain pills at all. After the second, I took Oxycodone at night for 2 nights, but stopped because I wasn't in that much pain and they made my reflux act up.
I do notice quite a bit of "dip" in the breast...my surgeon and the RO say it looks great. Well, maybe for someone whose breast it isnt.
And my RO said that the breast can change shape, become more firm, and smaller. She said you can get small, partial prostheses if it bothers you .I can't speak to radiation otherwise, as I will start next week with the staging, planning and tattooing, with the actual radiation to start after that.
I am new here and I found it completely by accident as well....don't even remember how! But I'm glad I did, as I've learned so much already.
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I had very little post-op pain from my incisions—other than the initial hit of pain meds they put in my I.V. when I came to, all I needed to take was Tylenol. However, I panicked when in the evening of the day after surgery, my chest, neck and sides began progressively feeling very sore, sort of like after having lifted too much weight the first time out at the gym. Turns out it’s normal, and it’s called scoline syndrome, for the succinylcholine they give you after you’re “under” to help you lie still for intubation & incision. It’s a powerful muscle relaxant, but for a microsecond before the relaxation sets in, your muscles seize up and contract extremely powerfully. So just like two days after a heavy workout, it’s just another form of DOMS (delayed-onset muscle soreness). By the fourth day post-op it should be gone.
My armpit was more bothersome than my breast, thanks to the seroma at the SNB incision site being so close to the skin while the bigger seroma in the tumor cavity had no symptoms and was buried deep inside. Believe it or not, for awhile radiation made my breast bigger because it enlarged that seroma to such a degree that I had to buy larger bras (went from 38 I/40H to 38J/40I). My cleavage skewed left. The seroma is down to 10 cm now, and my R breast (Louise) is once again smaller than my L one (Thelma) and I can wear my old bras again. But the irony is that it’s rounder, perkier, with a more normal nipple position than the L, which is pendulous and droopy as a beagle’s ear (with the nipple pointing due south). My cleavage now skews slightly right again, as Thelma & Louise are the same sizes relative to each other that they were before surgery.
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Thelma and Louise...I laughed out loud at that one.
Yeah, I hear you about saggy. I'm not even near your size though, only 38DD. But perkier would be good!
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Thelma and Louise......i really laughed at that one! I'm going to have to come up with names too!!
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Hi! I haven't checked in here in a while-- I had my lumpectomy surgery on Wednesday, and I'm doing really well. I know my experience will not be the same as others, but all my fears about the dye injections for the SNB and the wire localization turned out to be not a big deal. If anyone wants more detail on either procedure message me- I am happy to discuss it all in detail.
I did have a serious issue with the mammogram tech who had to check the wire placement in the moments prior to my surgery, and I'm going to pursue the issue with the radiation office manager and the hospital; after the rough and callous handling I endured I want to make sure no one else has to go through that. I'm not a wilting flower- that gal ripped the tape and bandage covering the wire off of me like a Brazilian bikini wax, and rather than apologize, said she thought it was fabric tape. Does she not know the difference coming from a surgical procedure before headed to the OR? Bad business- no one should be touched or man handled like that when they're so vulnerable.
My pain is totally manageable with Tylenol and ice packs- even the morning after surgery I got dressed and took my (small) dog for a (short) walk. The anesthesia wasn't easy, and my throat was very sore for the first two days from being intubated, but I'm feeling a a lot better now.
As much as prepared for pre and post surgery, reading everything I could and online forums, no one prepared for the worst thing I've endured yet- pulling off the ^&^))^)#@$# surgical tape!!! I tore my skin- even after reading and watching youtube videos about how to remove the adhesive and tape. Worst pain I had, honestly. I waited 48 hours after surgery- but I was till covered in orange goo (iodine?) from the OR and really wanted a shower.
I think there needs to be little more attention paid to this. I know if you go to a surgical supply company you can get adhesive remover-- but I would have like to have been sent home with a trial sized tube! Or something! Sheesh!!! Going to talk to my surgeon's office about how they can come up with a new protocol for this. I think seeing your incisions and breast for the first time shouldn't be compounded by having your skin ripped off, too! Still very grateful to be feeling as well as I am-- and much thanks to all the wonderful responses I've had here on the forum.
Best wishes-
Natty
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NattyDreadful, Gee, I didn't have ANY surgical tape. Only steri-strips that eventually fell off 2-3 weeks post-surgery. I'm sorry you had a the nurse from hell fiddling with your wires. That's totally unacceptable. I just can't believe it. I was so lucky that everyone concerned with my pre-surgery and surgery was intent on making it as comfortable as possible, including having me walk to the operating room - THAT was empowering. Glad you are doing okay now.
HUGS!
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Whattodo123 - Welcome to the Lumpectomy Lounge. Thanks for you asking for everyone's experiences. Reading them back to back was very interesting and I have read some of these ladies experiences already. But when this is all new, you kind of take in some things and miss other stuff. (info overload) So this has been informative for myself also. I cannot share my story as of yet, my lumpectomy is scheduled this Tuesday. I hope this forum will answer your concerns, I know it has for me.
ChiSandy - Thanks for the comment about "scoline syndrome". Very interesting. I had a friend that just had partial lung removed and she had similar symptoms two days after surgery. She was somewhat concerned from the soreness that went outside the area she has her incision. We somewhat theorized that the body's supporting area was just working harder around the surgery site to protect it. And yep . . . Thelma & Louise may have started a trend. Presently mine are "the girls", but seems reasonable to identify them each to better identify them.
Nattydreadful - Glad to hear you are doing well from you lumpectomy. Sorry to hear you met the bandage ripping Mamm tech. And you should share the info to hopefully correct the problem for future patients. I consider my entire experience with tests and biopsy's to be handled with kit gloves. Everyone (with exception of one MRI tech) was all about making the experience as informative and as comfortable as possible.
The MRI tech? she said things with a nice tone but her technique and undertones of how she worded things gave me the feeling I was a bother to her. A huge bother to her. Simple instructions were eliminated, such as why she handed me a bulb in one hand (I can only assume that was if I was having a panic attack). When she was attempting to put in the IV she had trouble finding a vein. The hemotoma she left in my arm lasted two weeks. And the entire time she questioned that I hydrated (and I had totally loaded up with water). When she got tired that I kept telling her I had been drinking lots of water, particular 36 hours before, she quipped I should have started four days in advance??? That "she" was the "go to" nurse for everyone else to find a vein (basically saying it could not have been her) She left a huge hematoma that lasted two weeks. The worse part was when I was to exit out of the MRI bench, she instructed to use my elbows and not to push on certain parts to get up. I did what she instructed but the part that separated my breasts was apparently being hugged by my large dangling breasts. So when I lifted up my upper body, that part came up briefly with my breasts and then fell. The part fell and made considerable noise. So she scolded me that I had not done what she had instructed. I am hoping if further MRI's are required down the road that I will never see this tech again. I have to add though that the actual process of the MRI was comfortable, cool (with fan) and fairly easy. I don't want to scare anyone off as it really was an easy process . . . I just got a bad tech.
PontiacPeggy - I liked your comment about walking into the operating room being EMPOWERING. Never thought of it that way. But maybe because I am blind as a bat and so its uncomfortable to walk in unfamiliar area without my glasses. Interesting viewpoint, that I thought was pretty cool.
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Here are some possible names for "the girls". Hubby and I had a good time coming up with these, maybe someone can add to the list. I kind of like Yogi and BooBoo.
Heckle and Jeckle
Itsy and Bitsy
Nip and Tuck
Lady and Tramp
Sugar and Spice
Yogi and BooBoo
Laurel and Hardy
Dorothy and Toto
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My alternate names were Mutt & Jeff.
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nattydreadful, sorry about the experience you had with the tech and bandages. I had the total opposite experience, the tech who Did the mammo and guided wire placement was very caring and attentive to me. It was something I was dreading but she made it pleasant and not awkward. As for removing the bandages at home and how difficult it was...i didn't have anything on me. I walked out with two incisions with stitches and glue covering them. No steristrips, no tape. No bandage. I had my surgery on Friday and was back to work on Monday, I'm glad my experience went as well as it Did!
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Glad to hear you guys think I should press the issue about the mammogram tech- makes me feel less like a crazy person
On another note-- a few hours after I wrote about my tape problems, I developed a rash. It started spreading and was pretty uncomfortable- raised, red and bumpy. I called the on call breast oncology fellow after hours and they said to take a Benadryl...woke up this morning and my torso and neck are covered in the rash....headed back to the hospital triage! 0 -
My DH named mine Merci and Beaucoup, LOL
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I see most people had lumpectomy and then moved forward from there. I met with BS last week and I want more information before I make any surgical decisions. I'm getting genetics test Monday and MRI next. Did anyone else choose that route first before getting the lumpectomy if so can you share your experience?
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I had the genetic testing done prior to surgery. My MO recommended I do it that way because his suggestion for treatment depended on the outcome of the genetic testing
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did it impact your surgery choice
And thank you for sharing
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yes, it did. If I had tested positive, I would have gone with BMX and probably oophorectomy. I was negative, and I wanted the least surgery possible, so I went with lumpectomy
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I'm glad I'm not the only one thinking this way 8-)
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Mucki1991 asked if others had other tests to inform decisions before surgery. Like others, I had genetic testing.If a mutation had been found, I'd have considered BMX.Also, I had several biopsies before LX.The initial MRI showed several suspicious areas on left, including one thought to look malignant (to be biopsied ASAP) and some areas on right thought to be benign (and wait for MRI in 6 months). Before LX, I had biopsies (US and MRI) on the suspicious areas on the left. Had other malignancies been found, I would have had a MX.A different BS had advised LX with excisional biopsy on left (because the location of one of the areas seemed inaccessible via external biopsy) and waiting 6 months for MRI on right. I'm relieved that I was able to have external core needle biopsies of both the left and the right so we had info to decide that LX would be appropriate.
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Mucki1991 - I had the genetic testing done - if it had been positive I would have gone with a BMX. (My mother had ovarian and then breast cancer. She died at age 64 from the ovarian cancer.) I also had an MRI - in addition to the 3-D mammogram, ultrasound. I have ILC which is often difficult to find. Some areas showed up in the MRI but were not visible in the US. I'm glad I had the MRI because it showed the results for both breasts and was nice reassurance that the other breast was fine.
I had a followup MRI last week, the surgeon wasn't 100 percent positive he had gotten all of the cancer with the LX. It was multi-focal and even though the margins were clear, there might have been another piece just on the other side. With the scar tissue and the seroma in the breast, it was still a bit unclear if all of the cancer was gone. To be sure, he wants me to have another MRI in four months.
He gave me the go-ahead to see the radiation oncologist. I start radiation in two weeks. One of the many great things about this site are the tips. I'll be stocking up on Aquaphor and getting some soft clothes to get ready.
I was pleasantly surprised to find out the radiation oncologist is following the Canadian protocol and I will only need four weeks of radiation instead of six. Since it involves daily ferry rides or flights to the mainland this is a big deal.
With the start of the next step in sight, it feels like a big burden has been lifted. Or maybe it's just the sunny weather
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No family history, but I am Ashkenazi Jewish on both sides. My BS never asked about my ethnicity, but at my first consult after surgery my MO did and immediately set up a genetic counseling appointment. The counselors left the decision up to me, but I wanted to know if I’d need to advise my son, sister & niece so I did get tested. Negative for the BRCA 1 & 2, PALB2 and Chek2 mutations. Had I been positive I’d have gone back in for a BMX and possible ovario-hysterectomy. But since I didn’t need MX or reconstruction, I went ahead and had my radiation. If I do ever need MX--or if my seroma disappears and my breast is shrunken--and reconstruction, my options for the latter would pretty much be limited to autologous rather than implant. Not that there’s any scarcity of abdominal fat to transfer…anyone want a fat donor?
I’m in the “less is more” camp when it comes to surgery, which is why I chose lumpectomy.
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Natty, that is terrible! Make sure you write that letter. And I sure hope you get the rash taken care of. I break out with surgical tape too unless it's the paper kind, but not to the extent that you did.
I didn't have any surgical tape, dressings, or steri-strips. I had surgical glue that eventually wore off, though it took a lot longer than the 7-10 days they said it would take. I also didn't have wires. They actually inserted a radioactive bead in the breast near the tumor to mark it. The only thing I can say negative is that they didn't warn me when they were injecting the dye and it made a loud popping noise and I jumped.
I had a horrible anesthesia experience the first surgery, in spite of me telling the anesthesiologist that I get VERY ill with any kind of anesthesia except for propofol. He was in a hurry, came in as I just walked in the door to my pre-op room, and replied "I have all kinds of things for that." Yeah, ok, AFTER I am sick, NOTHING works. I have severe dizziness with the room spinning and then me vomiting for 6 hours. I finally went home 9 hours after I arrived. The second surgery, I had no issue, the anesthesiologist listened to me, said he thought narcotics were the problem, would give me something else, gave me a scopolamine patch before surgery and I went home 6 hours after surgery.
Gardennerd: I'd definitely be writing a letter regarding your MRI tech as well. There is NO excuse for them acting like asses.
Mucki: I had an MRI shortly after I got the results of the biopsy. I also had genetic counseling, but did not get tested because Medicare doesn't pay for it unless you qualify for their criteria and I didn't. My mom had breast cancer and died from mets back in the 1980s when they weren't even doing routine mammograms yet. That's all the history I have. I didn't want to wait, so I opted for surgery right away especially since it was small. I wanted that cancer OUT of my body!
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SJI: I also am having 4 weeks of radiation. The planning/tatooing/staging is this coming Monday.
My RO gave me the tip for something cheap to use during radiation...cornstarch! She said it stops the irritation from friction and can be used right through radiation, where lotions cannot be applied foer 4 hours before a treatment.
I am definitely in the "less is more" camp as well for surgery. My surgeon is too....said there's still some DCIS present, but not in the margins...not sure exactly what that means, but he said they are pinpoint and the radiation should take care of it.
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My BS’ NP said the way to apply the cornstarch is to fill up a soft cotton sock, hold it by the cuff, and swing it so that it gently taps the skin. Never needed to do that—didn’t get irritation and my ‘pit didn’t sweat, so I just used my normal antiperspirant on the other side.
As for closures, I had surgical glue and steri-strips for both the lumpectomy and SNB incisions. The steri-strips fell off the lumpectomy incision without incident, but by the time I saw my RO for the first time 3 wks post-op, I still had a couple of them on my SNB incision (which was on my breast, not in the armpit). He asked if I’d like him to remove them and I agreed. Two days later, the SNB incision popped open and the tangerine-sized seroma beneath it gushed all over the place. The NP said it would have to heal from the inside and I’d need to change dressings several times a day for up to 6 weeks. I told her that was not gonna happen, so she harrumphed and went and got the other BS (my surgeon was in the OR that afternoon). He took a look at it and said “we’d better express & suture this—the weight of your oversize breast pulled it open and it won’t heal otherwise.” He squeezed out some more fluid and sutured it. Two weeks later the seroma was about the size of a grape—the stitches were removed, rads started a week after that, and it’s been fine ever since. (That seroma eventually disappeared, though the one deep in my breast is still there—10cm, making my breast look normal).
Had I not had that cruise-of-a-lifetime coming up in December, in retrospect I’d have gone for a bilateral reduction before starting rads. Still might.
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Mustlovepoodles - Love the hubby naming of your girls!! Too cute.
Mucki1991 - I did not get genetics testing but did have MRI. MRI found another spot in which it was found to be benign. I am glad I did the MRI though. Still going with original plan for a lumpectomy. During biopsy for spot radiologist prepared me for the possibility that a mastectomy could be recommended. I see nothing wrong with gathering as much information as you can to make the right decision for you. I might add, even if all the tests are done . . . I think you owe it to yourself to take time to absorb it all and allow oneself to feel comfortable with your decision. For my cancer and its size I found no data that would support that a lumpectomy vs mastectomy was better than the other. Even then, my struggle was deciding between a lumpectomy or a breast reduction with the removal of the cancer. Best to you.
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thank you all for responding. I'm a less is more too and in seeing all of the profiles with multiple surgeries it's prett scary. I'm ok if a I need to have a biopsy to make sure the other girl is ok. The sigh of relief will be worth it. Just so you know all the info that you ladies provide is really appr
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Mucki, glad we can help. Even gals who had a lumpectomy first and then needed to have a mastectomy haven't regretted going with an Lx first. Do the least amount of surgery possible to achieve the goal of removing the cancer. Not everyone needs multiple surgeries. Keep asking questions and we'll do our best to answer them.
HUGS!
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Hi Folks,
Question about prep for surgery:
I'm scheduled for bilateral reduction in a few days.My LX was c. 5 weeks ago.Before the LX, I found much valuable info on these forums.I copied the packing list from the "what to pack/prepare" before surgery forum and read through what I could.Recently, some posted some very practical advice to prepare for LX and to prepare for knee surgery.I'm trying to soak this all in.
Questions:
- Many have had LX or MX.In retrospect, is there anything that you wish you'd done to prepare – anything around the home? Anything to bring to the hospital? Anything for ride home from hospital?
- Question: If anyone has had breast reduction, anything about recovery from that to look out for?
- Anyone else use a CPAP for sleep apnea?Were you told to bring it with for use in recovery? In the pre-op appointments, I've had conflicting info.For LX, nurses had the CPAP but told me it would be better not to use it.
In case this helps anyone else: My addition to the "to prepare" list:
Before the LX, I forgot to prepare a list of contact phone numbers and email addresses of people for my husband to text or email to let them know I was fine and resting… Evidently one set of relatives had thought that if I checked in at 9 am, I should be home by 3, so when it got to 8 pm and they hadn't heard, they were worried.So…this time I'm preparing a contact list.
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Blooming - where is the Pack and Prepare for surgery forum you spoke of. I put in search and could not call up. I would be interested in it. Looked through the list of forums too . . . can't find.
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Bardennerd (and others who might find this helpful)
Here's a link to the list: https://community.breastcancer.org/forum/91/topics/699896?page=31
Here's the path:Topic: Shopping/packing/to-do list for surgery + recovery.... Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.
Hope it helps!
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