Lumpectomy Lounge....let's talk!
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Hello Ladies. I am newly diangnosed, and seeking guidance through this little excursion.
Thank you in advance for your wisdom and guidance.
:-)
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Hello Waterskz - I think we're talking on a DCIS tread too. My lumpectomy was wire guided and done using an "invisible scar" technique. The incision follows the curve of the areola. My only complaint is that my nipple has lost all most sensitivity and is sort of retracted a bit. If I had to do it again, I would deal with a scar and have the incision on the side so that my nipple didn't "die". The day of surgery was very long, but the recovery was relatively easy.
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Hi, PontiacPeggy and Blair2–I think my boss decided I needed extra work to not think about the next 2 days because I’ve been at meetings across the state since Friday. Sheesh! Belated thanks on your encouraging words—I’ll definitely get an Rx filled if they give one. I’d rather have it and not need it...my radioactive tracer injections are at noon tomorrow, wire on Wednesday morning at 8, then lumpectomy at 10 if things are on schedule. I’ve not gotten any Rx thus far....I had the wire done on the right back in 2004. Unpleasant, but over fairly quick. They’re the same people who did the biopsy and were very good at it.
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Thanks, Tappermom383 and others who responded re: post-op pain...I’ve had no time to jump on here at all. DH has promised to insist on something to take home for pain, just in case...
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DustieN, great to hear all went well for you! Keep healing!
Bella2013, I’m so sorry you were not informed and told what to expect—that stinks. Have you contacted anyone to complain? What happened to you was awful!
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Hi all! Just dx on 2/14. I’m having a hard time deciding between lumpectomy and radiation vs mastectomy. The thought of radiation is freaking me out. Too many later problems that I have been hearing about on here. I don’t know what to do. How was your radiation experience and how did you decide what to do??
Best to all of you
Jen
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Rjmjt120:
I had a lumpectomy with radiation and everything worked out quite well. I had swelling and pain in my breast and especially the nipple area but it went away quickly once the radiation stopped. The only difference I notice from the radiation now is that the skin on my treated breast feels very dry but lotion helps with that. I would recommend the shorter 3 weeks treatment plan if you can because there are less skin side effects with the shorter duration.
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Rjmjt, this question you ask is not black or white. At least it wasn't for me.
You could have a mastectomy, goodbye bad boob, you shall never bother me again, you and your wonky cells, be gone! And you might think that is that and you'll walk away fine and dandy. And there is a very good chance that is exactly what will happen. You'll be fine and dandy, minus your boob.
This is where the gray area enters. You will find women here who live flat and love it. Who live flat and hate it. There are posts by women who have forged ahead in life, minus one breast, and never looked back! Other stories of how some, after a mastectomy, look at their bodies with loathing and grief every time they see that scar on their chest. There are women who had reconstruction and feel great about it. Others hate their new boobs. And if anyone tells you that reconstruction is the same as a boob job they have their head up their ass and are idiots - do not listen to those people. The removal of a breast and life without it, or with a built one, can land you anywhere on the emotional map. You need to think, really THINK about the long term repercussions of the decision you make. You need to know yourself.
My surgeon advised me to think with what science knows and NOT with my knee jerk emotional reaction of terror. She said if mastectomy was what it would take to save my life, then mastectomy would be the ONLY option she presented me. But she stressed again and again and again that my chance of survival with lumpy and radiation was EQUAL to mastectomy. She also said that I could remove my breasts anytime I wanted if the psychological agony of keeping them got to be too much. But putting them back once they are gone is a whole other story.
If I said radiation was a breeze, I'd be lying. It left me with lymphedema that will be a life long issue. I had a cough that lasted at least 5 months. My boob has a permanent tan and the hair in that armpit has not grown back 7 month later. (if only I could get that on my hairy gorilla legs!)
Is there any perfect choice? I don't think so. But do not rush into any decisions until you've had time to think. You are not in an emergency situation so no one should be applying any pressure to you. Read more posts on different threads and get a feel for the different choices women (and some men) made and why. I am sorry for all of this. It knocks you for a loop!
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Welcome, Waterskz! I can't help but ask...do you water ski??? I'm in STL Metro, not too far from you.
I think you'll get lots of great advice and comfort here,
Rjmjt, when I first got diagnosed, I was shocked, frankly, and I didn't know "thing one" about my options and my first thought was just to get all the cancer out of there, full mastectomy and reconstruction. Until I saw what that actually entailed. Then I thought, whoa...hope I don't end up with that recommendation...and I didn't. I had a lumpectomy and radiation and now I'm taking Femara.
Fortunately, I didn't have any serious side effects from the lumpectomy or the radiation or the Femara. Swelling, of course, after the lumpectomy, while it was healing. It all took a little longer to heal than I thought it would. Hardness/lump that I didn't expect at surgery site that is slowly going away. Irritation sometimes while healing on that breast after riding, oh, 500 miles a day sweating on a motorcycle trip. Shooting pains sometimes that went away.
I have semi-sensitive skin (I do tan, but not easily and I'm prone to rashes from scented cosmetic products) and I thought I wouldn't do well with the radiation, but I did fine.
So please put me in the column of "people who did fine with lumpectomy and radiation".
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While I'm thinking of it, I would just like to say THANK YOU to ToriGirl for coming up with the idea for the Lumpectomy Lounge forum. I had so many worries, just like other people here who have asked questions, and everybody here has been so helpful.
So thank you, ToriGirl!
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I had the radioactive seed placement instead of a wire. All I felt was the lidocaine, which was given through a very fine needle, just like for the core biopsy. Felt like a mosquito bite. Didn't feel the seed going in, even though I did feel pulling & pressure when I had the core needle biopsy. The tracer shot into the nipple was brutal. The nuc. med nurse said, "this will be like a little bee sting." Well, I'd been stung once (by a wasp, which was awful), but this was way worse. Last year, a friend of mine had a BMX at a different hospital, and half an hour before the tracer shot they applied EMLA cream--which numbed her completely. Ask for a prescription for some if you can. Not cheap, but worth its weight in gold.
For DDs & smaller, Genie & Coobie bras should fit. But step into them (they stretch) rather than attempting to pull them on overhead. Fruit of the Loom makes a cheaper version, which both Wal-Mart & Target sell as "sleep bras." Playtex makes front-hook or front-zip knitted sports bras. For DDD on up (way up), Playtex makes more supportive (but still no underwire) front-hook bras. But the cheapest front-hook knitted ones (abt. $25) are by Leading Lady and come in all sorts of colors & patterns. (Some are listed as "nursing bras," but they don't have the fold-down flaps like on the ones I used for breastfeeding back when dinosaurs roamed the earth). ThirdLove makes front-hook and hookless stretch knit bras up to XL (38 DDD to 40 DD--but its site says if in doubt whether those are big enough, they probably aren't--and I don't know if they are stretchy enough to step into). They are a bit pricier, though.
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thank you Molliefish and Mo-Beth!!! I was also convinced I had IBC Mo Beth and showed My RO, RT’s and Breast nurses my breast a few times. I had some swelling, pinkness and orange peel skin before Rads and it only got much much worse during and after Rads. My Dr and nurses weren’t worried so I just decided I would stop freaking out and just tried to trust that they knew what they were doing. I still have a lot of orange peel but the redness has improved 2 weeks post Rads so it’s been good to see.
I’m also glad the hardness is normal.
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Rjmjt - I too had my head swimming trying to decide which way to go when I was diagnosed. My BS doctor talked me into a lumpectomy with a breast reduction. I learned quite recently that there is a method of lumpectomy called intraoperative radiation therapy that zaps the area when the tumor or mass is removed. It’s a one time radiation process that makes more sense to me than this week after week of radiation treatments. If I had known about it - I would have had that done, except my women’s center doesn’t offer it here. You might ask your doctor if that could be done instead of having several beaming sessions with radiation. You have Stage 0 - I wouldn’t see why you would need a mastectomy unless BC runs in your family, it then might be something to consider. The best thing to do is write down questions for your doctor, research options - and try to relax - you’ll make a good decision in the end.
Overall - I have no regrets with my lumpectomy. No holes or concave area where tumor was removed. My left nipple that was completely removed (again I had a reduction to add to a complicated lumpectomy), is pointing out more than my right side. My ps said he could correct it with a tuck in time, but I start rads (actually today) and we will wait and see what rads do first. I like my new size - so that is my experience with a lumpectomy. Hope this helps
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Rjmjt- you news, on Valentine's no less, enters you into a group you'd never want membership in. But its a group of warriers who have had to face it all before you. So sorry you had to join, but you got this!
I had a lumpectomy (LX) over a mastectomy (MX). My first choice of LX was due to research I'd done on MX. Recovery time with LX is much less (and less complicated) than MX. Weeks vs months; and no drain tubes. I also had no family history of bc.
Radiation - I qualified for Accelerated Hypofractionated whole breast irridation, which was 16 treatments. My skin held up very well, and it was doable.
Do some research, read any pamphlets your BS gives you, go with your gut instincts based on factual information. Best wishes to you.
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Thank you so much everyone I truly do appreciate your kind words and sharing your experiences. You have no idea how much!
Jen
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I just finished with the 4 radioactive tracer injections—and ChiSandy was 100 percent right. It was much worse than the core needle biopsy. Two shots were like angry wasp stings. One was a mild sting, but the third...I almost broke hubby’s hand trying not to scream. I don’t know what was going on behind the scenes, but I arrived at 11:45 for a noon appointment, was told the nuclear meds would be delivered by 12:30 and it would take 5 minutes...and didn’t get seen until 2:20. I was also told after the meds were injected, pain would fade. An hour later, and I’m still hurting. My arm and chest are achy as well. I’m not sure if this is typical. My bc nurse said to take my Valium 15 minutes before procedure but after I signed consent...and that never happened. It was by far the most difficult part of things so far. I think others’ ideas about emlA cream and well timed valium are good ones.
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Astyanax66, so sorry to hear about your painful experience today. Things should go much smoother tomorrow for your lumpectomy. The hard part is behind you now. Before they put you under for the lumpectomy be sure to speak to your surgeon and your anesthesiologist about pain management upon waking up in recovery. Lumpectomy is a fairly short surgery and you won’t be under for long. I thought I had a good couple of hours before I felt the pain. Not so in my case, I woke up in excruciating pain. I did well following my lumpectomy. I was on Oxycodone and 800mg Ibuprofen for three days then dropped the Oxycodone and took the Ibuprofen as needed.
Blessings for a quick recovery
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Thanks, Bella2013–I’m not too fussed about tomorrow since I sort of know what to expect. Butyes, definitely going to inquire about the pain management plan! I think part of what irked me today was not knowing when I could take meds and also seeing that other places offer EMLA and/or lidocaine....
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If you wake up in pain, speak up! They will inject a powerful painkiller (usually Fentanyl) into your I.V. By the time it wears off and your I.V. is out, you will probably need nothing stronger than a mild opioid--and I didn't need an opiod at all! (They actually gave me only a couple of 325 mg Tylenol--which is hard to find at drugstores now, since 500mg seems to be standard). If you do need it for more than a couple of days, ask for a weaning-off schedule.
If you have one of those C-shaped memory-foam (or even inflatable) travel neck pillows, it's the perfect shape to slip under your arm to cushion your incisions. Take all the help you are offered: you're entitled to it.
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runor ,
You make so many excellent points. I notice a lot of women choose mastectomy out of fear instead of out of medical necessity, which is fine and a personal choice, but it has.huge lifelong consequences, emotional, physical, psychological, and more.
I don't know if we really truly consider what that means.
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Thank you to EVERYONE who shared their experiences with the pre-op procedures like seed placement and the injection of nuclear dye.
I spoke with one of my surgeon's RN's again about the pain involved in both. She says they try to find the area to be marked with ultrasound first before they move on to a mammogram. She said I can certainly ask for lidocaine before the mammogram since I'll need it anyway for the seed placement. OK - I'll trust her this won't be so bad.
Re: the nuclear dye she said the injection shouldn't be through the nipple, but closer to the site where my tumor was (against the chest wall in a very large breast.) I can't remember if there is lidocaine before the dye injection. Hope so.
Rjmjt120 - Hi, and welcome. I haven't had radiation yet, but i can tell you about my surgery decision process. I'm glad I had the time with neo-adjuvant chemo to decide what sort of surgery to have afterwards. My immediate reaction when I got my diagnosis was to have both breasts removed. I had a very large tumor that was triple negative. However, as the weeks passed I was mourning the loss of my breast(s) months before any surgery. However, as the tumor responded to chemo and shrank a lumpectomy became possible for me. I realized just how much I wanted to keep my breast and nipple - both of them. As soon as I made the decision to have a lumpectomy a huge weight was lifted from me. In the future if I start to get stressed or worried about keeping the breast, I can always get a prophylactic mastectomy at a later date. No one ever would be able to give me back my original breast once it's removed.
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Hello my bc Sisters
I had my lumpectomy yesterday. Wire placement was not painful; they gave me an injection first. It was a long wire since my tumour is small but deep (7.5 cm deep). I still have bleeding and am a bit concerned but checking with the nurse if it is still bright red tomorrow.
I am grateful though to have no pain or nausea. I chose block anaesthetic instead of general and had very little discomfort. I went out for a short walk today and feel pretty good.
Here in Canada we do mastectomy less often than in the USA. Not sure why, but there is solid research to favour LX and rads. I would never choose major breast surgery unless it was the only life saving option. I had breast reduction decades ago and vividly remember the drains, pain and long healing time. I understand it is a personal choice and I feel for all the women going through this.
So far, all has gone well for me. I get pathology results on March 12. Praying 🙏 that my prognosis stays as good as the biopsy. For me, the fear is the worst.
My thanks too ToriGirl for creating this lounge. One question, how do I get a Bellini? 🍹
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The drains, pain and long healing time are why I'm not jumping at the chance to reduce my non-cancer breast for symmetry. (The L breast is at least a cup-and-a-half larger than the R, which was the cancer breast and is still quite oversized). I am a wuss. That's why I haven't had facelifts, Botox, fillers, or bunion surgery; and why I waited till 61 to get my first knee replacement.
I made the decision for LX over MX even before meeting with my surgeon--the radiologist who did my core biopsy reassured me that "even if it's cancer you can probably keep your breast." Went home, downloaded the Kindle version of Dr. Susan Love's Breast Book and read everything pertinent to my situation at the time (including knowing which questions to ask when I got the dreaded phone call the next day). My surgeon laid out the statistics for me, and asked if I'd like to participate in a Mayo Clinic "decision tree" survey. I agreed; and proceeded to watch a video, see a slide show and read handouts--which tracked exactly what the book and my surgeon had told me. Then she asked if I had a preference after reading & viewing the materials. When I said "Lumpectomy + radiation," she beamed and said "Excellent! I was hoping you'd choose that." All the more remarkable considering that her specialty was skin-and-nipple-sparing mastectomy--and lumpectomy carried a much lower fee. (She was also one of the first breast surgeons in the U.S. to advocate the use sentinel node biopsy over axillary-node dissection as first-line nodal diagnostic tool).
But waiting two weeks (March 12) for path results? Yikes! My surgery was on a Wednesday and I got the surgical path results the following Monday. Guess things are done a bit differently north of the border.
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Dear Life, so glad everything went well! I keep forgetting to ask this: What is the wire thing about? I've never heard of that? It sounds like I'm glad I didn't have to do that. And....what is a Bellini?
Paco, you said, "I notice a lot of women choose mastectomy out of fear instead of out of medical necessity," and you're correct. That was me before I found out about the drains, pain and long healing time, not to mention I also found out that the recurrence statistics weren't any better for MX compared to LX.
ChiSandy, speaking of that, I'm thinking I'm NEVER doing the symmetry thing. Huge wuss here too.
And, KatieJane, OMG, I can't believe I forgot to mention that I had orange peel skin! That's what first alerted me to something must be awfully wrong, it's the classic symptom of IBC so I'm sure I have it, and started my whole freaking out fest! LOL. So I just thought I'd let you know that, yes, I had that too, and that went away too. Relax...that will go away too. Sheesh...sorry...
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ChiSandy it sounds like you had a great surgeon, very progressive. Can't do better than connections to Mayo Clinic.
I agree two weeks is too long to wait. Not sure exactly what will be covered in my pathology report, but 7-10 days seems to be standard here, then wait for the surgeon to have an office day.
I have a friend who is a radiologist at the Cancer Centre and will ask her why it takes so long.
One good thing is the anaesthesiologist phoned me at home tonight to check on me and ask how long the freezing lasted. Just a quick call but it meant a lot to me
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DearLife, glad it went so well for you. I waited at least three weeks for EVERYTHING. Nothing happened faster than three weeks. It is pure hell! I knew in December that I would need another mammogram end of March. I still do not have an appointment. I have been waiting since mid-December to hear when my mammogram appointment is. Wait and wait and wait.
Mo-Beth, this wire thing is like a fish hook they thread through a needle that they have stuck into your boob. This is how mine went: boob is squished in mamm machine. "Area of suspicion" is located mammographically. A long needle is then placed into the tumour. In my case they entered way back near my armpit and threaded the needle to above my nipple. That was one hell of a long trip on my monster boobs! Then they slide a hooked wire through the needle, hook the hooked end into the tumour, pull out the needle and it leaves the wire in place. They rolled the end of mine up like a pin curl and taped the loose end to my armpit. I then left that hospital, drove an hour to another hospital for the surgical biopsy.
The purpose of this barbaric practice is so the surgeon can locate the mass. If you have a hard, palpable lump that is obvious, this might not be required. But mine was not palpable at all and the surgeon needed an X marks the spot. The hook is the X.
Being utterly a wuss when it comes to needles, like, seriously phobic, I told my surgeon that I wanted this step skipped and that she should just eyeball the right spot and cut me open there. She said that trying to find my 'thing' without a guide would be like looking for an eyelash in two pounds of ground beef.
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Lovely ladies, thank you for posting your opinion so. I was diagnosed with Stage IIA last week. It is grade 3, ER, PR positive. The biopsies showed cancer in the breast and the lymph nodes next to the lump. I met with a surgeo yesterday. She let me decide between LX and i MX. I met with the oncologist today. He say I should do chemo, surgery, radiotion and hormone pills. He said the order of treatment is between me and the surgeon. The surgeon seems to think that if I did chemo before surgery, it will help reduce the lymph nodes, and therefore less lymph nodes have to be removed, reducing the risk of lymphodema. Does anyone have experience with chemo prior to surgery? Did anyone do chemo, surgery, and then chemo again
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Wow Runor - I can't imagine having the wire place then having to drive an hour. I did have pain meds for the insertion, but after about 1/2 hour it started to ache so badly I can't imagine what driving or even riding in a car would have been like.
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The wire placement thing seems so outdated, I'm absolutely shocked hospitals still do this as standard procedure. At my hospital, they used a radioactive iodine "seed" to locate the excision area. Same general procedure for insertion - squeezed into a mammography machine, needle to shoot the thing in - but no wire hanging out. I understand there is also a newer, third way, with a "scout" seed or something.
I had a second opinion at a nationally recognized cancer center and the MO said to me, there are far too many women getting their breasts chopped off unnecessary for perfectly treatable disease. She said, if you have cancer, we treat it. If it comes back in another part of your breast or in the other breast, we'll treat it again. That kind of sealed it for me.
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Dear Life—glad all is going well! I hope the bleeding has stopped and all is okay
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