Lumpectomy Lounge....let's talk!
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Hi Everyone, I'm new here and I was recently diagnosed with Invasive Ductal Carcinoma. On July 6th I thought, --hey I have the day off I should go get my mammogram done-- I stopped into the imaging office, told the woman I didn't have an appointment, but needed my routine mammogram. She said "oh, you need an appointment for that, but let me check if they will see you". Thirty minutes later I found out I was one of 252,000 breast cancer cases in 2017.
My oncologist tells me from the pathology of my biopsy and because I'm hormone positive, this is a cancer they know exactly how to treat. Because my oncotype score was high (39) I'm going to need the chemo - 4 months worth and radiation. Last week I had the good news that my nodes were clean and the cancer is contained.
So my treatment plan was originally set to do Chemo first, then lumpectomy as my breast surgeon wanted the best cosmetic result, a smaller cancer that she had to remove. My oncologist said no way, it's best to do the lumpectomy first then he can get the pathology of the lump and know best what chemo drugs to use.. So I asked my breast surgeon to change her plan and she did. My lumpectomy is 8/25 and I will start Chemo 3 weeks after.
I'm getting my port placed next Wed, i'm not being knocked out but getting xanax for that. There was a great post on the boards about what that process is like, which eased my mind a lot.
Would love to hear your encouragement as i'm pretty nervous about all of this and what to expect for recovery time from the lumpectomy. They tell me it's out patient surgery.
Look forward to connecting with you all,
Tina
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Hi Tina. It sounds like you have a great attitude. You sound efficient. I'm normally like that, but totally fell apart when I got my diagnosis. You're way ahead of the game in that respect.
I had my lumpectomy almost a week ago. I never had to take pain or nausea medication at home and I'm already back out walking every day and keeping busy.I did rest more the first several days and made sure to eat clean and drink a ton of water, as well as doing slow gentle stretches. Everyone is different though, so my thought is that it's best to prepare for a difficult recovery while hoping for the best. I had my surgery around 1pm and was home that evening.
Good luck with everything.
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Tina, welcome to the sorority nobody wants to pledge. Did you have the biopsy the same day as your mammo? Surprised they’d diagnose IDC without a biopsy. (Usually, if something is found on a routine mammo, further diagnostic imaging—spot-compression mammo &/or ultrasound, maybe MRI) is done and then a biopsy. And I had to discontinue all bleeding-risk meds & supplements for 5 days before the core-needle biopsy. Did they biopsy your sentinel nodes? And how do they know the "cancer is contained" without removing the tumor and checking margins?
Water under the bridge, though, since you’re getting a lumpectomy. It is almost always an outpatient procedure. You’ll have the location procedure (either a wire inserted or a radioactive seed implanted, as I had) in the morning, followed by the tracer &/or dye injection to identify sentinel nodes if they hadn’t already been biopsied; then the lumpectomy—for which you will get general anesthesia. You will probably be home by late afternoon or early evening. I wasn’t even given a prescription for pain control; in the post-recovery-room roomette, I was given two regular strength Tylenol. All I needed was ice and extra-strength Tylenol the first two days post-op, and only intermittent ice thereafter. Like so many others here, the armpit, not the breast, was my nemesis. Strategically-placed pillows will help. Second the advice to wear only clothing that buttons in front or you can step into, and if your bedroom is upstairs, prepare to sleep downstairs till you get your strength back. (I didn’t need either of those tips, but most women do). Your upper body muscles will be sore for a few days post-op due to the muscle relaxant you get in your IV just before they make the first incision: before the muscles relax, they contract powerfully. It’ll feel like you do 24 hrs. after an extremely intense weight/resistance workout. It’ll ease up on Day 4.
Don’t try to drive for at least 5-7 days. Don’t lift anything heavier than 5 lbs. with that arm. And get measured for a compression sleeve & gauntlet &/or glove: for lymphedema protection when you take flights longer than 3 or 4 hrs, exercise, garden, or do any repetitive and forceful motion with that arm. If your measurements are w/in standard sizing parameters, you can buy compression garments at a lower prices online from LympheDivas and CompressionSale.com. (LympheDivas has many colors & patterns and has sales on some of them).
Sorry I can’t advise you on chemo or port installation, as I’ve had neither.
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Brightness, the post-surgical pathology is the one that counts. My IHC had my HER2 at 1+, which is still negative. Here’s hoping that your ER & PR are high enough, your grade is 1 or 2, and your nodes are clear, so your OncotypeDX will be low enough to let you skip chemo, and that they get clean margins so your surgery is “one and done.” (OncotypeDX is now offered even for those with 3 or fewer positive nodes). My lumpectomy was on a Thursday; I had my results the following Monday morning.
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Brightness - thank you for your kind words.. I am trying to have a positive attitude. My faith helps a lot with that. I've had many breakdown moments too. I'm very nervous about chemo and not being "on my game" in all areas of my life. I posted about all that in the chemo board. It sounds like you are doing well too. I'm glad that you are recovering well. Thanks again.
ChiSandy, Thanks for your reply and the welcome to the sorority. Just a couple of things for clarification, I do see that as I explained it looks like they diagnosed me the same day, but really it was 2 weeks apart. But right from the beginning everybody that was looking at my images said "very suspicious of cancer" they had all kinds of medical terms that explained why they thought so. I had my routine mammo on a Thursday, I had an MRI the following day, and a biopsy in the breast surgeon's office the following Tuesday. Everybody was pushing this on the fast track as they were confident this was cancer. The radiologist offered to do my MRI for free because they knew the insurance wouldn't pay for it due to it not happening after the biopsy and they wanted it done right away. I didn't ask questions beyond that, I said lets do it. So 1 week and a day after the mammogram I got the results of the biopsy - Invasive Ductal Carcinoma.
I had my lymph node biopsy on the 7th and they came back clean. I used the word contained, not them. I assuming that since my lymph nodes are clean, the cancer isn't spreading, so to me the cancer is contained in my breast. My treatment plan changed midstream, like I explained, that's why I'm going back under for the lumpectomy.. Otherwise they would have done them together. There's more to the story behind that, but as you said that's water under the bridge.
Thanks again for all of your suggestions.
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Thanks for the clarification, Tina. Neoadjuvant (pre-surgical) chemo is usually done for larger tumors, based on clinical rather than genomic features of tumor biology—because it isn’t often that there’s enough biopsy tissue to run an Oncotype. In your case, there was. In ER+ IDC, the usual order of things is biopsy—>surgery—>genomic testing (Oncotype, & Mammaprint or Prosigna if Oncotype score is intermediate, which yours wasn’t). Then, depending on the genomic results (or obvious post-op pathology) either radiation—>anti-hormone therapy, or chemo—>radiation—>anti-hormone therapy. If chemo is given, it’s given before radiation; and anti-hormonals start once you’re done with radiation (one set of side effects at a time, thanks). So you probably have a breast surgeon with some pretty “mad” oncoplasty “skillz” (as the millennials say)—she likely feels (and rightly so) getting the tumor biology right so that your MO can select the right chemo “cocktail” is priority one, and that she is confident that she can get good cosmetic results even with a 2cm tumor.
You’re in good hands.
Meanwhile, I’ll give the caveat that your mileage may vary, every case is different, you should not expect the same results, yada yada; but the night after the day of my lumpectomy my sister (who flew in from Virginia expecting she’d need to take care of me) took me to dinner; I was able to sleep upstairs and wear pull-on tops, PJs & T-shirt dresses instead of the button-up stuff I’d stocked up on; the day after that we walked to the grocery 2 blocks to get food for a “girls’ night in/f-u., cancer” pizza party; the day after that we walked 1/3 mi. to brunch, 1/4 mi. to the beach and 1/2 mi. home. That night, I drove us home from dinner. Two weeks after my lumpectomy (with help loading & unloading my car and schlepping instruments) I drove from Chicago to Rockford to do a concert and back again (2 hrs. ea. way), the same night. Four weeks post-op I drove from Chicago to Iowa City to play at a 4-day folk conference and do a concert, and back again (4 hrs. ea. way). I had a “problem seroma” at the site of my sentinel node biopsy, but you won’t have that since you’ve already had your nodes biopsied. You’re doubtless younger than I am (I was 64 at the time) and may heal even faster from surgery.
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I had my lumpectomy on Tuesday afternoon and, like most of you have expressed, the SNB site is much more sensitive than the breast incision. Thank goodness for the heart-shaped pillow my Nurse Navigator gave me! Evidently my nodes were hard to find & rather large so I had to have a drainage tube put in, and because of my sleep apnea & the level of pain I had in recovery, I was admitted overnight to the hospital. Pain has been minimal since getting home, but when I first woke up from surgery, I was pitiful! It hurt so much! Thankfully the meds kicked in quickly and make it go away. And even more thankfully, the three nodes they removed appear to be clear! Drain will stay until Wednesday when I go back to the surgeon, but I've been able to get around pretty well so far. I don't own any button-front shirts so I opted for a wide/low scoop t-shirt that's worked out well. Sleeping sitting up has really helped with the drainage, keeping my lungs clear, and preventing me from sleeping on my side since that's my preferred side to sleep on. Bonus for having to stay out of work till Wednesday - I'll be able to watch the eclipse if it's not cloudy here!
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Sorry you had a rough time, FleurDeLis. For showering, you can make a drain pocket by poking holes in a terrycloth mitt, and running cloth ribbon or string through it—you can then hang it over your shoulder and put the drain bulb into it, leaving your hands free and relieving tension on the drain tube & bulb. (This “hack” courtesy of a close friend who had a BMX with drains last year). As to the eclipse, are you in the totality belt? Here in Chicago we’ll get about 88% of it!
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Thanks for the hack! Yes, we are right on the path, and the city is supposed to be packed! I live near our local fairgrounds which is hosting a big viewing event so I wasn't looking forward to trying to get home from work with all the mayhem!
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I was just diagnosed on the 14th of August and I'm stage 2 with the lump about 2cm. Right now I have the option between a mastectomy or a lumpectomy and I wanted to know what was the deciding factor choosing the lumpectomy over something else.
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GeorgettK, Welcome to the best place you never wanted to be in. Since a mastectomy was never on the table for me, I can't advise you from a personal point of view. However, I do know that most women prefer to start "small." Try a lumpectomy, preserving your breast, and see if you can get clean margins. Keep in mind that once the breast is gone, it is really gone. Even if a mastectomy turns out to be necessary down the road, at least you will have tried to keep as much of your body as possible. Also remember that even with a lumpectomy you can have plastic surgery to make the breast match its non-BC sister. Insurance has to pay for that.
We'd love it if you would post all the information you have in your PROFILE, then go to SETTINGS (in the upper right) and make each item PUBLIC. We'd like to know where you live since we are everywhere and you might have someone near you.
I also recommend that you read Dr Susan Love's Breast Book. It is a great resource and will give you lots of information. Most of us know nothing when we are diagnosed and don't even know what questions to ask. This book helps give you that info.
Good luck. Others who have been in your shoes will respond shortly.
HUGS!
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PontiacPeggy always gives great advice, GeorgettK! I'm not sure if you're Stage 2 or Grade 2 - they usually don't stage until after surgery. I'd agree with her start small advice. You can always have another surgery but can't go backwards.
MJ
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GeorgettK: I had a choice as well to have a mastectomy or a lumpectomy. The surgeon thought I was a Stage 2 to start but after surgery I really had been a Stage 3. Anyway, my decision to go the lumpectomy route was by looking up the statistics at that time of 2011 to see the percentages of mastectomy vs. lumpectomy on long term survival. The percentages were the same so I went for a lumpectomy. You might check on the current statistics.
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GeorgeTTK: I had a lumpectomy, which on one hand I'm glad about but on the other hand I still wonder if a mastectomy would have been better. I have invasive lobular cancer which is difficult to detect. It kind of forms in sheets rather than lumps. My surgeon really went out of his way to not do a mastectomy. I was fine with either choice. I'm not sure why he was so adamant. My cancer was multi-focal which as I understand it calls for a mastectomy. One consideration is you usually need radiation with a lumpectomy. On the other hand, it's nice to not need much reconstruction. It's a tough choice. All the best to you.
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Welcome GeorgettK, sorry you find yourself here. Like all the previous posters, I also chose lumpectomy over mastectomy. My BS then recommended APBI with the SAVI so I was able to have surgery on 3/7 & complete radiation on 3/24. I felt good enough after treatment that I flew to Austin on 4/8 to stay with my grandson while my DD & SIL went to Peru.
My BS felt my prognosis was the same whether I had the lumpectomy plus radiation or a mastectomy. Recovery was going to be much quicker & easier with the lumpectomy. Additionally, my (traitorous) right breast was already larger than my left (as the result of a lumpectomy from my left breast decades ago) so I am actually more symmetrical now than before surgery!
I just wanted to be done with everything as quickly & completely as possible. It helped that both my BS & RO (in whom I had tremendous confidence) believed that a lumpectomy & radiation would be an effective way to proceed.
Do whatever you need to do to feel comfortable with your decision then put it behind you. Whatever you decide, best of luck!
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GeorgettK, my lump was 1.9cm, so fairly large stage 1. I had lumpectomy first. My tumor changed from ER/PR + to ER+PR-, which is considered a more aggressive cancer. So, my treatment plan changed from rads to chemo, just like that. Due to having a very active family history of breast cancer (and many others), they wanted me to have the expanded genetic testing. When it came back it showed that I had TWO gene mutations that cause breast cancer--and every other cancer found in my family! Yikes! Anyway, my MO and BS strongly advised that I have BMX after I finished chemo.
My sister had BC 5 years ago. She was fortunate to just have LX and rads. She has been very satisfied with her decision. I never intended to have a BMX, but the decision was pretty much a no-brainer. I have not been happy with the results. I had all kinds of trouble healing and was left with terrible scars. I don't recommend it unless you 100% KNOW it's the right thing for you.
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GeorgettK, my thought, once I knew the probable size of my grade 2 tumor—which my BS correctly guesstimated would be Stage IA provided my nodes were negative (which they turned out to be)—was “less is more.” Like Peggy, I figured you can always go back and have a mastectomy after lumpectomy, but not vice versa. What iced it was that my BS had me participate in a Mayo Clinic “decision tree” study: I watched a video and read a manual that set out the ipsilateral (same breast) recurrence chances for lumpectomy + radiation vs. mastectomy, and any (including contralateral) recurrence vs. bilateral mastectomy. The difference between lumpy+rads and uni MX was 4% vs. 2%, and 6% vs. 3% for lumpy+rads vs. bilateral MX. And what iced it was overall survival was exactly the same. Mastectomy (MX) usually, but not always, can let one avoid rads—if my motivation were to avoid rads, and I went ahead with MX and turned out to need it anyway due to location of tumor cells, it’d have been a major bait-and-switch. Besides, it was a small tumor high & outside on a huge breast. So I did the lumpy + partial-breast targeted rads.
Only hitch was that I had 2 sentinel nodes “light up,” but they were practically up in my armpit and attached to 2 non-sentinel nodes that came along for the ride, so I had a total of 4 nodes removed.
Lumpectomy is a shorter surgery than mastectomy, especially bilateral and especially if immediate reconstruction is done. You almost never need an overnight hospital stay for lumpectomy, prescription pain meds are usually unnecessary, and recovery is usually quite swift (but don’t overdo it).
A lot of your decision will depend on the size of the tumor relative to breast size and degree of asymmetry. A friend of mine had DCIS (mine was IDC), but unlike mine hers was scattered in a very small (less than A) breast; she hadn’t worn a bra in decades, was widowed and had no inclination to date. So she had a BMX without reconstruction.
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GeorgeTTK: I chose a lumpectomy because the recovery seemed to be much easier and statistically the survival rates are the same. I amvery pleased aesthetically with my lumpectomy. My scar is around my nipple and blends in. I can barely tell the difference in size between breasts. I am large chested though.
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Hi Georgette,
I started out with lumpectomy for my 2.1 centimeter tumor. Unfortunately once my surgeon saw extensive lymphovascular invasion she took everything she could and told me at my post op I need a mastectomy. There was no way to get clean margins. My suggestion is to ask for an MRI to see if anything is hiding. Also make an appointment with a plastic surgeon to discuss reconstruction options. Then make an informed decision. I don't regret trying to do lumpectomy but wish my team had suggested MRI to begin with.
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Hi everyone, just checking in.
tina_marie, I'm so sorry you have to be here. I'm 4 days past my lumpectomy and I feel pretty good. Something that really scared me the first night after surgery was I had pretty severe back pain. It woke me up out of a sound sleep, and the prescription pain pills wouldn't touch it. Of course I laid awake for hours thinking that my spine was full of cancer (even though I had no reason to think that). Turns out they had my compression bandage on too tight. The minute I took it off the next day, it was instant relief and not a twinge since. Other than that, I've had almost no pain. I'm numb along the outside of my armpit, which I'm told is normal, and I get very tired mid afternoon. Two days after surgery, I felt well enough to take a shower, wash my hair, and go get a few groceries. I took my son with me so I wouldn't have to lift anything or push the cart, but when I came home that day I was WIPED. OUT. Same thing yesterday, I needed a long afternoon nap. Taking it easy today.
fleurdelis49, how are you feeling? Any better?
I had my follow up yesterday, and found out I have clean margins and lymph nodes! So relieved. Official stage is 1A. My doc told me that I'm good to go back to work after Tuesday (I'm a waitress at a very busy restaurant) but I'm going to ease back in. My boss has been amazingly understanding and accommodating, and agreed to only put me on two days next week.
We're waiting on the results of the MammaPrint test, which will determine if I would benefit from chemo. No further treatment at the moment until I get those results on Sept 11. So basically, I have almost a whole month that I don't have to even think about cancer.
Easier said than done, right?
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QueenofWands, so happy to hear you are doing well & got great results! I won't get mine until Wednesday morning, but I'm doing great for now! Off the pain meds & feeling fine. Taking it very slow, especially with this drain from the SNB still in place. Evidently that part was more invasive than the tumor removal since it was close to the surface. Had a minor emergency with my dog (who is fine now) yesterday so I may have stressed the underarm incision a little, but I'm taking it extra easy today (the dog too). Thanks for asking about me! I'm hoping to do the MammaPrint too - I had no idea the results take that long! Looking forward to meeting with an oncologist at last!
I imagine y'all are bracing for the eclipse impact too! As excited as I am to see it, I'll be glad when eclipse fever is over!
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It's just amazing to me how different protocol is from hospital to hospital, cancer center to cancer center. I was sent home from my lumpectomy with nothing - no compression bandage, no surgical bra. I actually put my own bra back on in the recovery room.
Glad to hear, queen of wands and fleur de lis, that you're both taking it easy. You'll recover much more quickly if you respect the surgery you just had. I still have numbness in my arm, which is normal I'm told.
Congratulations on your clean margins and clear nodes, queen! I held my breath until my surgeon spoke those words. Hoping for good results for you, fleur!
It's hard for me to believe that I'm done with active treatment. It was a whirlwind these past six months! Now I just pop a pill every day and go on with my life. I'm kind of surprised when people ask how I am!
Best of luck to you.
MJ
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Fleur, I didn’t know they’d order genomic testing on a HER2+ tumor, because the targeted therapy (Herceptin &/or Perjeta) starts out being given with chemo anyway. I thought the genomic tests (MammaPrint, OncotypeDX, Prosigna. EndoPredict) were only for ER+/HER2- (Luminal type, A or
tumors—triple-positive is one of the two kinds (ER-/PR-/HER2+ being the other) of “HER2 type” breast cancers.0 -
I'm not certain about testing as I haven't met with an oncologist yet, but I have read that the MammaPrint can be done for both HER2+ & - whereas the Oncotype is neg only, but I'm still learning.
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Tappermom: I had the same experience, I put my bra back on in the recovery room. I ended up wearing my softest most unsupportive bra and was in pain for the first few days until I realized I needed a much better supporting bra!
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Good morning ladies. I've got my post op appointment Tuesday. I still don't have the results of my pathology and it's really starting to wear me down. I can feel myself just going through the motions again, pretending to be normal. I turn to this site as proof that many others have gone through the same pain and worry and are okay now, but seriously, I am going down hill fast, hoping for the best possible outcome, but dreading the worst. I've got an important family function today and I just want to find a corner to cry and scream instead.
As far as I can tell, my wounds are healing nicely. I woke up with my arm above my head this morning and no pain from the stretch.
Will there ever really be a cure for this or will women forever have to face this horrible disease and all the emotionsthat come with it?
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Brightness, who would have thought we would be celebrating lifting an arm overhead, right? I'm looking forward to that myself! Just shows how much we take for granted in our everyday abilities! I can understand where you're coming from - I hate not knowing! Being stuck in limbo without having a direction sucks and makes me feel helpless & mad at the time that I feel like I could be DOING something that's passing by! I guess it's my struggle to give up control (well, the ILLUSION of control really, isn't it?) and to develop patience. I feel like George Costanza on Sienfeld: SERENITY NOW!!
Patience definitely does not come naturally to me, but I see here what others have gone through and try to draw on their strength as an inspiration. We'll all hold hands through this darkness together! Hugs!0 -
Brightness, I had my follow-up visit with the surgeon two weeks post-op and that's when I got the pathology results. That seems pretty typical. There's waiting at every stage and none of it is easy!
Be sure to ask for copies of the pathology and operation reports on Tuesday. I found them very helpful in understanding exactly what went on. And it's how I realized I had internal stitches, not just the surgical glue I thought was holding me together. Just as with my hysterectomy nine years ago, that's why it's so important to take it a bit easy.
Best of luck to you and Fleur as you get your results. Come on back and let us know.
MJ
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So thankful that both health systems I use (Presence for my PCP, NorthShore for all other docs) have patient portals, which notify me of test results as soon as they’re in my chart and let me message my care teams. Relieved me of the burden of making or waiting for dreaded phone calls.
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Thanks for understanding everyone. I'm meeting a friend to walk and listen to music in the park later. That should help.
Chisandy, my hospital has a portal as well, but I have good communication with my team, so I didn't bother to sign up for it. I feel confident they'll notify me as soon as the results come in. I want to get it over with, yet I'm dreading it in case the news isn't so good.
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