Lumpectomy Lounge....let's talk!

pvsue

Hi MelancholyNC Good Luck today!!! Have to start to get ready for the appointment. I did speak with the Salon Mgr and she mentioned I have to return at 100%. Weight restrictions are hard to manage especially since we do online booking. So if I cannot hold up an over weight long haired Golden Retriever for bathing/grooming or help restrain a crazy husky/Shephard/Mastiff for nails I won't be able to return. (FYI Mastiffs are normally not the crazy one-you get my drift). As of today I do not think I will be ready for all that by next Wednesday. They are a difficult on a good day.

mustlovepoodles

TennisPink, welcome to the club you never wanted to belong to. To address your question: I was absolutely committed to having a lumpectomy (LX). Unfortunately, genetic testing turned up two serious gene mutations which probably caused my breast cancer (BC) and will be a factor in future risk. My MO strongly recommended a bilateral mastectomy, based on my PR negative status (more aggressive), family history (5 women in 1st or 2nd generation with BC), and bad genes. As she told me, I would be under constant threat for more BC. By having a BMX, I will have reduced my risk as much as possible.

Had I not had all those risks, I wouold have stuck with the LX. Much shorter and easier recovery. Surgery was a snap. I went home the same day, no drains, no staples, no nausea or vomiting. I was up and walking around by that night. Sore, but not really in a lot of pain. I did take a narcotic at night, because I had to sleep on my back and every time I moved in bed, I did have pain and it kept me awake.

I intended to be off work about 5 days, but I had complications that most women don't go through. I say all that to forewarn you that sometimes things don't go your way, but you can get through it. I was prohibited from lifting anything over 5-lbs, which includes a gallon of milk. No lifting anything heavier than a book for a couple weeks. You really have to honor that because if you don't, you can get a lot of bleeding and it might not heal properly.

Best of luck to you.

MelancholyInNC

pvsue - Best of luck today with your appointment as well. I hope you get good news. Maybe we can compare notes later.

#cancersucks

Grazy

It's interesting reading everyone's surgery stories - all experiences are just a wee bit different. When I read yours, Peggy, and you mentioned the heated gown, you reminded me of the heated blankets I was given all along the way - I'd forgotten about that! Pure bliss - I felt as though I was at a spa! haha The Radiology, Nuclear Medicine and OR rooms I visited were all on the same floor, so they were just shorts walks to and fro, dragging my IV pole along the way. Every time I had to wait, they'd wrap me in warm blankets - heavenly. And, yes, you're right - walking into the OR is empowering. It' reminded me that I wasn't in dire straits. I strolled in, greeted everybody, hopped up on the bed and was "out" after some laughter with the anesthesiologist (not that I can remember now what we were joking about!!).

Molly50

Welcome TennisPink, my story is also a bit different. I was told lx plus snb easy peasy on to radiation after and then a aromatase inhibitor for 5 years. When my BS did my lumpectomy she found not only two positive nodes but extensive lymphovascular invasion and could not get clean margins. So she finished up and told my son for me to call for an appointment on Tuesday instead of my scheduled appointment on Thursday. At that appointment I was told that I need a mastectomy due to the amount of tissue needed to be removed. This ended up being fortunate since they found DCIS in my nipple stem during my mx. I had genetic testing but didn't get the results before my unilateral mx so now I am in the process of scheduling surgery to remove the remaining breast. I don't regret trying to conserve my breast. The whole reconstruction process is a nightmare of decisions, risks and multiple surgeries. I would much rather have my own breast.

MLP3

moondust- all of my decisions, including chemo, were prompted by my team. Although every case calls for different tx, they all say that the smaller academic centers just haven't caught up yet with the new studies, techniques and protocols. So I'm happy to hear that you are seeking another opinion at a larger academic center.

HH- love your thoughts! I'm choosing strong over bitter. Why stay bitter and waste time on negative energies when we need positive energies to get through this. Life's to damn short to be ugly. Let's all be pretty and happy and kick cancers ass;)

Katz, fightergirl, grazy- thanks for the kind words!

Grazy- I'm curious to see what my breast will look like after rads. Slight dent already but nothing too bad. I figured I'd use the padding from bathing suits that I normally don't use if it's that obvious. I do have small thoughts of a mommy makeover... Tighten up the belly if it doesn't bounce back after this and maybe some perky boobs...? Has anyone gone this route after all is said and done with treatments?

Tennis- I was in the exact boat as you re: lx vs mx. At first diagnosis I wanted them both gone. But after doing tea search and trysting my mo and bs, I was better informed. The outcomes were only slightly different and for a 1-2% difference with lx vs mx, I went with breast conservation. It's "the new black" in BC surgeries I'm told! My ro just told me that a new study just came out that there are more uneccesary mx and bmx done in younger women who are looking for "peace of mind".

I'm heading in for mapping for rads next Thursday. And I'm doing hypofraction rads which are more radiation in a shorter time. I'll do 3 weeks whole breast and 1 week boost as opposed to the standard 5:1. New studies out of Canada and UK are showing very similar results. And the SE's are less too.

MLP3

My nurses... Making sure I eat, or wanting some bananas...?

Katzpjays

MLP3 - I am hoping to do the same rad course as you as my RO indicated I would be a candidate...just one more hurdle for now as I wait for my Oncotype score to come back. If low or low intermediate I should be starting rads late May or early June. Keeping my fingers crossed!

Glad you have such excellent nursing care

mustlovepoodles

Waiting here in the Bone Densitometry room, DH getting his nuclear bone scan. Looking for prostate mets. Crossing my fingers.We should get results before the weekend. ..he's a Gleason 8, very aggressive prostate cancer. We will tell the kids next week, after we return from my business trip to Savannah.

PontiacPeggy

Poodles, praying for good results for DH. Many hugs. In your pocket all the time now.

MLP3, what pretty nurses you have!

HUGS!

Katzpjays

ChiSandy - Love your Passover story. My best friend sent me a pic of this T-Shirt that serves as her explanation:

iammags

bobbin2- It's been ages since you posted but I wanted to say that I had the same Oncoplasty surgery that you are contemplating and I'm really happy with it. If you have any questions for me I'd be happy to try to answer them.

Alice- that really sucks that you feel you can't trust your medical team. I feel for you. If you haven't already been to UCSF you'll really like it. I used to work on the campus (not in the medical field). I hope that you can get a resolution soon.

I can't remember who said that their motto is Cancer Sucks. That's my motto too!

Tennis- I decided against mx for the same reasons as MLP. I figured that I could always go back and re-visit my decision if I had to.

MLP3

Thanks Peggy:)

Good luck poodles. Sending positive vibes your way! ((Hugs)

Molly50

Praying for good results from the scan for your DH, Poodles!!!!

HuskerFan

My doctor gave me the option of either lumpectomy or mastectomy. I've been leaning towards the lumpectomy, but I'm starting to wonder if that's the right decision! After removing the lump and then having radiation will my breasts end up being different sizes? It sounds as though some of you are having a reduction as well.....I'm a 36DD and wouldn't mind having my "girls" a little smaller. My consult with the surgeon isn't until May 13, so I have some time to research and think about all this.

DisneyGirl16

Heathet, hope your surgery went well.

MLP and LTF, you both look great! Congrats on finishing chemo! And, MLP, I love your nurses.

Poodles, I am hoping your husband's results show no mets.

Froggie, my chest looks like a roadmap. Lol. I have 7 marks on my right side for my radiation. I have had to have them each re-done at least once in the 2 1/2 weeks since I started treatment (even though they are covered with stickers). I started with dark blue marks, then purple and now a sky blue color. I feel like a rainbow brite doll. Lol. I have been wearing either regular t-shirts or polos/button-up tops (I can usually leave the top button undone and not have my marks show). I have only told a few people at work so I can relate to how you feel about it advertising your cancer diagnosis.

TennisPink, before being diagnosed with bc, I always said that if it happened to me, I would get a double mastectomy and be done with it. When it did happen to me, and I was told I had a choice between lx and mx and that the chance of recurrence would be the same with either surgery, I decided to go with the lx. I did consult with my Radiation Oncologist and my Breast Surgeon (who said if it was his wife, he would be happy with either choice and that his own mother had chosen lx when she was diagnosed) about it and I did my own research but I did not tell anyone besides my husband about my diagnosis until I decided on which surgery I wanted so I knew I was making the decision that was best for me. I have not regretted choosing lx. Now when people tell me that if it were to happen to them, they would immediately choose a mastectomy, I tell them that I used to say the same thing and that you don't know until it does happen to you.

I, too, had never had surgery before and had only been admitted to the hospital to deliver my children. My surgeon walked me through what would happen and I took some time to sit alone and visualize it. I also spent a lot of time reading other's experiences on this forum so I knew what to expect and how to prepare for everything.

PontiacPeggy

HuskerFan, Welcome! Radiation doesn't necessarily make your breast different sizes. It didn't for me. Perhaps it matters how much was removed and the location of the BC. Definitely talk to your BS about having a reduction done if you are interested. It should be covered by insurance. And both can be done at the same time, I'm told. I am a strong proponent of an Lx when it is a choice, as it is with you. If it becomes necessary down the road to have a mastectomy you can. But you can never undo it, so conserve the breast, do plastic surgery if needed and get rid of the damned BC.

HUGS!

HuskerFan

PontiacPeggy, I didn't realize that a reduction would be covered by insurance! Do they do that at the time of the lx? I'm learning so much on these forums 😀. I am 43, so I feel like I have lots of living left to do and I want to make an informed decision! My dr said that when I meet with the surgeon for my consult, she'll likely want me to have a pretty good idea about whether I want the lx or mx. I feel like I don't have info on all my options yet.

tbalding

Had post op visit with BS today. Disappointing news, didn't get good margins, so have to have another surgery May 17. Also, she found a small area, 3 mm, of tubular invasive bc near DCIS area. BS said she got all of it. But just in case I'm going to have her check lymph nodes when she goes back in to get the good margins for the original bc area. She said that she didn't believe there was a chance that it has spread, that the tubular type is non aggressive, but since she's going back in, I want the peace of mind in knowing for sure. So back to staying busy & waiting.....

I do not regret my decision to have the lx, and even though I have to have more surgery, I'm still not inclined to have the mx. The surgery for the lx wasn't bad & recovery wasn't painful, was just sore.

PontiacPeggy

HuskerFan, check with your insurance but that is my understanding. I'm sure others who have been in your position can answer definitively.

TBalding, what disappointing news. Hopefully, the May surgery will be the last with clean margins. I can understand why you want to have a SLNB for your peace of mind. I think it is a wise decision. Waiting just plain sucks. But we're here for you!

HUGS!

queenmomcat

Seconding Peggy's comment: Huskerfan--run it past your insurance company first, of course! but it's my understanding that if the insurance company covers the surgery that caused the discrepancy, it's required to cover the surgeries to even things up again, even if that means working on the unaffected breast. (That's what happened with/for me: scar revision on my affected breast, reduction on my unaffected breast)

Off to see the plastic surgeon for what is hopefully the final followup visit! There's more that might be done, but I'm not sure I want to undergo general anesthesia yet AGAIN so soon. Five surgeries in two years is too much for me, and we're getting into the voluntary end of things in re. breast cancer.

TennisPink

Thank you everyone for your responses to my post!

I had my pre-surgery meeting with the BS just an hour ago and she walked me through the surgery day and exactly what she will be doing (lump removal up to clean margins, 2-5 lymph nodes for biopsy). She also talked about the wire locator placement and the dye injection (exactly as you described, Grazy &Peggy!!). I had my MRI at the same hospital where I will have the surgery, and they gave me an awesome heated blanket in the MRI room on the table, so I am hopeful I will get one again like you did on surgery day

DisneyGirl and MLP -- my first reaction was to get rid of both breasts, too!! I didn't even want to hear what anyone had to say about lumpectomies, but I finally calmed down as the biopsy results started coming in (as well as an MRI) and it was not looking like things were horribly awful at all in the left breast. That was when I started to think that maybe a BMX was way too much for me. If at any point in time things are not good in the future, I can always opt for the BMX.

HuskerFan - the lumpectomy does not always leave you with 2 different sizes--but not sure what the others here might have to say about that. In my case I have a 2cm mass, with a teeny little in-situ mass situated just a small distance below that and both will be removed together. So the surgeon said that the plastic surgeon would need to 'fill in' that big area of about 5cm to fix the breast. BUT ....I told my BS that I hate my breast size and she suggested having the plastic surgeon do a bilateral reduction (called onco-plastic reduction). She said would have offered it if I had asked even if we did not need the plastic surgeon. I was SO glad I spoke up and asked for it, because they were more than happy to do it. Ask your surgeon!!

Molly50 and Poodles -- Yes, the BMX makes the most sense in your situations, and I am SO glad you shared those with me and the important factors that went into your mastectomies. I know that sometimes a lumpectomy is intended, but not everything goes as planned, so it is good for me to keep that in mind as I go into surgery. We actually discussed all of this today at the BS pre-surgery meeting and I was reading your stories in the waiting room . Poodles...sending good thoughts your way for DH!

PontiacPeggy

TennisPink, sounds like a great appointment with your BS today. Yeah for getting the reduction, too. All is looking very positive!

HUGS!

HuskerFan

Thank you everyone for your responses! I am definitely going to check with my insurance company about reduction and bring it up when I meet with the BS. I was feeling a little vain, worrying too much about how I look vs. getting rid of the cancer. It's very reassuring to hear all of your experiences and suggestions

NoUGo-CA

Hello TennisPink,

You made your decision for a lumpectomy after considering all of your options. Trust yourself. You are making the right choice for yourself based on the information that you have now. That's all that we can do. If we learn there's more that we didn't know before - then we adjust. That's what we do because from the moment we're told we have cancer we're making adjustments in everything we do from that moment forward and we get very good at doing this.

My lumpectomy regarding having the wire placed, the dye injected and waiting for the dye to make it through the lymph nodes and then going into surgery was similar to many of the experiences already posted. I also had a port implanted on the opposite shoulder from the lumpectomy for my upcoming chemo. The lumpectomy was the easy part! There was pain from the incision when I got home. I was sent home with Oxycodone and took one shortly after coming home. It may have been a coincidence but I got a headache and felt nauseous after taking it so didn't take any more after that. Icing and OTC - alternating Ibuprophen and acetaminophen - was enough to help me manage the pain, including the port incision.

I had four deep axillary sentinel lymph nodes removed as well. This is where my real pain came from. I was lucky because my surgeon was able to do the lumpectomy and sentinel node dissection through one incision. I started having pain in my armpit and underside of my arm around a week after surg. I thought it was all related to the lumpectomy. During my post-surg follow up I asked her about the armpit pain because it wasn't near my incision. She said that was common and then she gave me a prescription for Lymphedema Physio Therapy that she said I 'should' try. She said that was her standard of care for all of her patients with lymph node dissection. My reaction was: 'Really? Like I don't have enough Dr appointments and diagnostic work-ups already and now you want me to go twice a week for six weeks of therapy for lymphedema that I don't have?'

I almost didn't go. BOY, was I glad that I didn't brush this off!. I understood the issue of lymphedema from my surgeon and reading the info given to me regarding possible post and future problems with lymphedema. However -- I wasn't aware of cording (Axillary Web Syndrome - AWS). It felt like a very bad razor burn with increasing pain and tightness in the underlying tissue of my armpit and underarm. This kind of pain wasn't addressed in the lymphedema info I received. The therapist explained why cording happens after lymph node removal then gently massaged where I was having pain. She also taught me stretching exercises to do at home. It made a huge difference! I had immediate relief and I ended up only needing one more visit after that. I was told that most cording resolves on its own but without treatment it can take a long time to heal extending pain and limiting range-of-motion longer when it can be resolved sooner rather than later. With all that we have to endure with this diagnosis, we should be able to take advantage of easing or eliminating as much discomfort as possible, right? I continue to do my stretching every day and I am feel better every day!

Moral of this rather long tale (sorry): If your surgeon doesn't talk to you about this then ask him or her about giving you a prescription for lymphedema physio therapy (you might have to search for a place that offers this kind of therapy not all PT/OT clinics offer it) - especially if you have pain in your armpit and underside of your arm. This pain is soldiered through because many women and surgeons don't know any better. I would have endured the pain and adjusted to it too. Luckily I followed through with what my surgeon prescribed to help my body get over this source of discomfort sooner rather than later. Even one visit to learn how to self-massage and get stretching exercises is worth it.

Good luck and hoping you find peace in your decision and that all goes well - no complications and if there's a surprise that it is only a good one!

HappyHammer

Oh, Poodles...in your pocket. Praying for no mets! Hugs.

queenmomcat

Huskerfan: color me vain as well, then. We've gone through so much chit with this, that wanting to at least LOOK as normal as possible afterward is only normal.

ChiSandy

I never considered mastectomy--from the get-go, I was told my tumor was “tiny" and the radiologist who did the core-needle biopsy said that even if it was malignant “you'll still be able to keep your breast." That was a comfort, not necessarily for vanity. My breasts are HUGE (DD is what I used to want them REDUCED to), and at two different boutiques I was told that mastectomy bras and forms aren't made any larger than DD (in fact, most of those bras stop at D) so I would likely need to have my healthy breast reduced to match. At my first BS appointment, she asked me which surgery I was contemplating and told me that though the chance of recurrence with mx is 3% vs. 6% with lx, overall survival rates are identical. She showed me a decision-tree video program that confirmed that. I replied at the end that I still wanted lx, and she beamed, “that's my recommendation too." (She is one of the best skin-and/or-nipple-sparing mastectomy surgeons around, so I know her recommendation was not profit-driven).

My surgery-day experience had mostly similarities but some differences compared to others posting here. I didn't have a wire localization, but rather a radioactive seed implantation--painless (even the lidocaine shot) and done in the hospital's mammography/ultrasound all-outpatient “Center for Breast Health" by the same radiologist who did my biopsy. I got back in my street clothes and walked to the Same Day Surgery wing of the hospital, where I was admitted, given a roomette, put in a johnny-gown, had an IV started, and then wrapped in heated sheets and wheeled to Nuclear Medicine (on another floor, down a long couple of corridors--the hospital covers three blocks end-to-end, plus the attached cancer center). Even if I could have walked, by then I was in footies, butt exposed, dragging the IV pole. Had the nuclear tracer injection for the sentinel nodes, which (because it was injected into the nipple) even with lidocaine was painful for about 15 seconds--then had to massage my armpit for 15 minutes (they gave me headphones and a great alt-folk mixtape) to activate my lymph nodes & get the tracer flowing. They tried to image my breast, but it hadn't “taken" yet so they wheeled me back, where I watched TV with my family, went online with my iPad, took some “before" photos in full-patient-regalia (including paper shower cap) for about an hour. Then they swaddled me with another heated blanket and wheeled me back to Nuke Med for my “close-up;" this time the nodes showed clearly. Wheeled me back to my room; met with my surgeon who showed me the ultrasound of the tumor & seed (I remarked that it looked bigger & more spiculated than on my first ultrasound, and she said not to get ahead of myself) and then the film of the sentinel nodes: They looked like two grapes clinging to a stem. Then met with the anesthesiologist, who shot some Versed into my IV, acquiesced when I told him I'm a singer and needed a pediatric airway so as to minimize irritation of the vocal cords, and then gave me a Zantac to keep reflux at bay. I was immediately wheeled down the hall to the OR, the mask was placed on my face and next thing I knew I was in the recovery room. They asked me if I hurt, and when I nodded, they shot some Fentanyl into the IV and wheeled me back to another roomette where my family was waiting. They took my vitals and asked if I thought I could eat (duh--nearly 16 hrs. NPO?), and brought me juice, cookies, a mini-bagel & schmear. (It was still Yom Kippur because the sun hadn't yet set, but I figured God would give me a free-pass this time). Then two regular (325mg) Tylenol, back into street clothes, wheeled to my car, and then home. Slept downstairs though I felt strong enough to go upstairs; and pulled my button-front PJ top over my head w/o thinking (but w/o incident). Bob gave me a Norco left over from his own surgery 2 mo. earlier. The next day I was climbing stairs just fine; two days post-op, my sister & I walked to Whole Foods (she carried); the day after that, we walked to brunch and then to the beach and back. Next night I drove us home from dinner out.

I don't think I got the blue dye injection because my pee never turned blue or green. But the surgeon ended up taking 2 add'l non-sentinel nodes (i.e., they hadn't lit up) because they were attached too closely to the sentinels and couldn't have remained in the “chain." All were negative, and margins were clean. Surgical path. histology was the same as core-needle: ER+/PR+/HER2-, grade 2. But because the final tumor size was 1.3cm rather than the original 7mm (ultrasound) or 9mm (biopsy) estimates (but still considered Stage IA), OncotypeDX was ordered. Score of 16 reinforced my onc's recommendation to skip chemo and go straight to rads.

MLP3

tbalding- sorry about your news.

Tennispink- that's great that you had a good appt today. Where are you getting your care? I'm at DFCI.

MLP3

katzpjays- here's to a low oncotype!! Keep us updated: