Lumpectomy Lounge....let's talk!
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So very true, KayFry. We all make our decisions based on the best knowledge we have and what we deem is right for us. Second-guessing is fruitless. We can't go back. We did what we thought was right.
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I love reading everyone's differing opinions. It helps me formulate my own opinion, and gives me some control over what happens to me.
Work is a tough one. On one hand totally focusing on myself and family for a while would be great, but losing grip of my job is scary. I'll just play it by ear. I won't make a decision until I have to. The drive is about 1.5 hours each way plus I guess I need to allow for time to park and get in and out the hospital. I'll just keep it ticking over in the back of my mind.
Time to get reading 😊
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shaz, here in the US most hospitals have dedicated parking for radiation patients that is very close to the entrance to the radiation facilities, allowing them to park and get I. The door VERY quickly. It definitely makes a difference!
I don't know if the same practice is followed in Australia.0 -
My radiation was in a separate building on the hospital campus and we patients got little hangtags to put on the car mirror that let us park there. And we had to walk just a few feet into the building. Not like walking into the hospital then walking for miles to get to where you needed to be.
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Dr. Love updates her book every 5 years and as Peggy states, the updated version is due this year. I also borrowed it from the library. I think it's an excellent resource, but not the only resource.
I'm finding rads exhausting. I had chemo prior to rads, the holidays, family issues, too. I park fairly far away at the med center; walking in to get rads is about the only exercise I'm getting right now. :-)
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You've had a long haul, Poppy. Good for you for walking. It had to have been difficult starting rads so soon after your chemo. Everything we have to do just adds to the exhaustion. How are you doing with your reconstructed girls? I just had the lumpy. And tonight I realized that my girl feels normal. Nothing had hurt for sometime but this was different tonight. Or maybe I'm just paying attention.
Please don't push yourself too much. There will be time to recover when you're done with your rads and then you will get your energy back!
I found there are a great many good articles on this site too. So I just combine all the information from everywhere and use it. But for me, Dr. Love's book was the most helpful overall. Specific articles here were better. HUGS!
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my MO said that every woman I their department over 40 gets a yearly mammogram. My Cancer was not on last year's mammo, and it got into one of my nodes. What would have happened if I'd waited another year? I will get at minimum annual mammos if I have to pay for it out of pocket
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Mine wasn't on last year's mammogram either, though it didn't get into my nodes. We accidentally caught it very early. My breast was tender like it was bruised at the 3 o'clock position. I thought my little dog had "punched" me when we were playing. But after a mammo and ultrasound they found it at 6 o'clock. So it was a lucky coincidence that it was found.
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I know many of you have been through this - my surgery is a week away. It's getting more real. Questions:
1) how long does LX take?
2) should I get something besides a regulate pull over sports bra?
3) recovery - how long?
I thought I had this in the bag, but now I'm nervous.
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hi Carrie.
Mine took an hour I had the sentinel node removed too. I had 1 drain put in and stayed overnight in hospital and they took the drain out before I went home.
I would recommend a bra that you don't have to move your arms too much. One that does up at the front would be the easiest but I couldn't find one so I just got a post op bra with back fasteners. Make sure you don't have an under wire though.
My op was 6 days ago. I'm still a little sore and I tire easily but I'm getting better each day. I'm hoping to be able to drive on Wednesday for my follow up appointment. They told me not to drive for 7 days. I have 2 incisions the one they removed the tumour from is about 4-5 inches and the other is about 2 in.
I hope that helps. I'm sure more people will give you some feedback as well. Good luck and hugs
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Carriek, of course you're nervous! We all were. You definitely want a front closure bra. Or one like a Genie bra that you step into. If you have lymph nodes removed it can be difficult to raise your arm high enough to put on a bra or reach behind to hook it. That challenge didn't last long for me. My Lx incision was less than 2" from just below the nipple straight down (at 6 o'clock) - I'm also very small. SLNB was about 1-1/2".
I was never in pain. I took a pain pill in recovery because I thought I should and then took Tylenol mostly to sleep at night. I had my range of motion back (and comfortably, too) right away. My surgeon did a fantastic job.
I was lucky that I had lovely distractions just before my surgery - one of my sons and his wife came in to care for DH while I recovered. They live far away so it was marvelous to see them. Then my other son came in to perform the same job. So there was much happiness in my life along with the crap of BC.
Try to relax. It will soon be over!
HUGS!
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Shaz - I am done with treatment other than the follow-ups and the radiation. Both my RO and MO have told me that I am "NED" or have No Evidence of Disease. I was back to work about a week and a half after surgery and worked full time all through radiation. There were a couple of days when I just couldn't do it and went home at lunch and didn't come back. My radiation was about 20 minutes away from my house and my office. I had it late in the day (3:30) every day so when I was done with it I could just go home. I had only worked for this company 3 months before I was diagnosed so had no vacation/sick time built up, didn't qualify for unpaid medical leave, and did not have short-term disability (as the company didn't offer it. Now they do. A little too late for me!) My boss was very good about letting me do what I was able to. Looking back, I wish I had been able to take more time off, especially during radiation. The fatigue really got to me both physically and mentally.
Carrie - I don't actually know how long my surgery took. It started at about 11:30 am and I was home by like 4 or 5. Like everyone else has said, I had very little pain at the surgery sites after the first day or two. The anethesia hit me really hard though. I had never had it before and didn't know how it would affect me. I am large chested and needed massive support after surgery as any movement was painful. Even 4 months after surgery, I'm stll wearing a bra at night for the little added support. Like Peggy, I had family come and take care of me after surgery, my mom, my son, and future daughter-in-law. It was nice visiting with them as they live 6-7 hours away from them. Let us know how you do!
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I believe it was the American Surgeon general who gave the advice that two yearly mammography is appropriate for lhe over 50s. Mammograms can give false positive results. There was a very interesting study done in Norway some years ago which found that there was some evidence that cancers could regress by themselves. This was based on the death figures taken for some years before mammography was introduced and those following the introduction which showed an increase which no one could account for. It is always a gamble.
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Carrie, my LX was a week ago tomorrow, and I had no node biopsy. I'm not exactly sure how long the surgery took; I'd been told to expect about an hour, but I believe it may have been a little longer than that. I went to the hospital that morning wearing a Coobie "comfort bra," which is a stretchy, seamless one that goes on over the head, and I had no trouble getting back into it in the recovery room. However, I suspect if I'd had a sentinel node removal as well, I might have had more trouble with raising my arms to get that bra on. I've been wearing it, or one like it, ever since I came home, including at night, because the slight compression, protection (has very light, thin pads in built-in pockets), and support (even though I'm small enough not to really need much of the latter) seem to help. My pain level has been very minor and manageable, after day 1 I've only taken Tylenol a couple of times, nothing else.
As for recovery time, I have been mostly doing my normal things this week (especially by about day 2 or 3), including working at my job (easy desk work because I'm a writer revising a book), just being careful not to lift anything very heavy. I have walked with my dogs in our fields but have not taken them on leash walks because I don't want them pulling on me right now, and have walked on my slow treadmill desk, but I have stayed away from my elliptical machine and riding my horse. I'm sort of going by how I feel. My incision is about where Peggy's is, but I think mine is at least 2 inches, maybe close to 2.5. I've driven my car, not often, but when I needed to, and that was fine. Today I'm planning on doing a light, low-key easy ride on my horse, with a friend to help me lift my saddle up onto his back and stuff like that. I have found that I'm a little more tired than usual, and I think that's a combination of anesthesia after-effects and too many nights of lost sleep prior to surgery! I'm somewhat anxiously awaiting my pathology results, which I hope will come my way today or tomorrow, and that's been probably weighing on me quite a bit. My follow-up appointment with BS isn't until a week from today, but I believe he will call me with results when he gets them.
I think you'll do fine. The anticipation is worse than the actual surgery.
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Thank you everyone!
How do you know if you will have nodes removed?
I think my MRI stated there was nothing in them. Anticipation is the worst. I just want next tuesday to be over with already.
Happy Martin Luther King day to you all.
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Gemma, that's the thing. Prior to improved, widely-used mammography, DCIS like mine was rarely diagnosed. Many women who died of other causes were found on autopsy to have DCIS, and at the moment, no one can really determine which ones would ever go on to cause invasive cancer. There are many false positives with mammograms, and probably lots of unnecessary treatment. All of this was in my head when I kind of rashly delayed my mammogram due to inconvenient circumstances. My DCIS, when found, was high grade, and my first radiation oncology guy told me it likely wouldn't have been present on mammogram a year prior. But because of the grade, mine probably WOULD have progressed to invasive cancer, and of course now I wish I'd found it even sooner. There is still a lot of disagreement in the medical field about this, but knowing what I know now, I am definitely back to yearly mammograms, or even more often if my doctors feel it warranted.
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Carrie, I didn't have an MRI, because my BS explained that he often finds they just confuse the issue, so he only orders them if he's not comfortable that he understands what's going on in the mammograms. He told me at my pre-op appointment that he didn't think I needed a sentinel node biopsy, I guess because, again, he felt comfortable with what he was seeing on the imaging. At the same time, he mentioned the morning of my surgery that there is a 15 percent chance that pathology would show invasive cancer, so that kind of knocked me back a bit. I think and hope that was one of those disclaimers that have to be said, but assume that if he had really thought invasive cancer likely he would have done the sentinel node removal at same time as lumpectomy. Unfortunately, there are just a lot of uncertainties with all of this, so remember that once your surgery is done and your pathology report is in, you will move beyond uncertainty and have a plan. I think not knowing is the worst.
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Carrie - my MRI and ultrasound showed my nodes were clear but its not a definite unless they remove one and examine it in the lab. I had IDC, and I see that your stats say DCIS. I am not sure if sentinel node biopsy is standard with DCIS? I don't think DCIS can spread to the nodes so that's probably why he hasn't mentioned it. Your surgeon should tell you if you are having a sentinel node biopsy. I had one node removed and raising your arm up right after surgery is pretty impossible. It's better now. I would take something that buttons up the front just to be on the safe side. You never know how you will feel. The anticipation was the worst. I am glad it's over because I stressed over it big time. You'll do fine!
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kfry - I too am well over 50 and I have been getting yearly mammos. since dr. found calcification in my breast over 20 years ago. A wire guided core biopsy came back benign but since then I have been religious about having yearly mammos. In 2012 we were out of town for several months and our mail forwarding service was not going well so I must have missed my reminder card. I totally forgot to have my mammo. In 2013 I received a letter reminding me that I had missed 2012 and it was time for mammo. I immediately made apt and the rest is my history below!!! Thankfully we caught it early and I have been given a good prognosis. I have 2 daughters and I encourage them to have yearly mammos and if insurance won't pay I will!! (I am not BRACA1 or 2). I think it is important for women to at least have a baseline mammo at 40. There are more and more younger woman being diagnosed then ever before and if such a simple test can save lives we must encourage it.
Hugs, Mar
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canuck46, isn't it coincidental that when we've missed our mammograms for whatever reason (and I was truly remiss, unlike you), that's the year that the cancer turns up? Year after year I went, and nothing was amiss. Once, years ago, I was called back for a second image, but that too was fine.
How was your IDC diagnosed? Was it that you had to have a re-excision for margins not clear, and then it was found? Like you, my DCIS was Grade 3, and that, more than anything, is the reason I'm feeling so anxious about the pathology.
My daughter just turned 41, and she did get her first mammogram by age 40. Actually, she had a very small lump that was found by her gyn, I think, and she was sent for mammogram and ultrasound, where it was said to be benign, thank goodness. But the daughter-in-law of a very close friend was diagnosed last year at age 31 of a very aggressive cancer that turned out to be in both breasts (the smaller tumor in the second breast was only found after she had elected to have a prophylactic double mastectomy, had never shown up on any imaging). This young woman had no family history, negative for BRACA 1 & 2, and leads a very healthy lifestyle. I talked about this with my first radiation oncologist when I got my diagnosis—more and more young women being diagnosed (and usually with more aggressive tumors than us older ladies), and RO agreed and said he believed it's environmental exposure to something—maybe plastics? Anyway, it's very concerning and I'm glad my daughter is getting her mammograms.
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Carrie....I think the procedure itself is less than 2 hours. But there's some waiting time. I went in around 9:30 that morning and was home by 4 or 5. I bought a front closure bra from Walmart (get a large size) and wore a zip up hoodie with yoga pants. After surgery I was ace bandaged completely around my chest area so I didn't even put the bra on. Be sure to ICE the first day...it keeps the swelling down. I was 59 and in good health and my recovery was basically a day. I slept the day of the surgery when I got home and was fine the next morning...but I took it easy one more day and then was back to driving. I think since you are DCIS they probably aren't doing the SNB. That's by far a lot harder than the LX...and that really is more about being uncomfortable than painful for me. I kept my bandage one for a couple of days...I felt the compression helped to keep any swelling down.
I got all my cleaning, laundry ,bill paying etc. done before surgery so I wouldn't feel stressed. I had peanut butter and cheese crackers on hand and I ate egg drop soup that night from our local Chinese resturant (my hubby doesn't cook LOL). I hadn't had much of an appetite since my DX so I had to find things that I could eat. The next morning I got up and made myself tea and toast. I had surgery on a Thursday so I had the weekend to recover. I'm a stay-at-home mom so most of my activity is playing chauffeur to my DD. You will do just fine.
p.s. I also took a Xanax the morning of surgery which really helped calm my nerves.
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Kayfry - IDC was diagnosed because BS wanted to do SNB (Which thankfully was clear) and re-excise to make the margins larger. I am strongly ER pos. which is why I am on Femara. While undergoing rads I met several woman between ages 31 - 45
who were having rads as well. I do worry about my daughters aged 37 and 43 but know they are vigilant about breast exams monthly and mammos. Who knows what triggers those nasty cells in otherwise healthy women!!!0 -
Gemma, it was actually the US Preventive Task Force which decreed that annual mammograms caused unnecessary exposure to radiation (how ironic) and excessive false positives. As it turns out, everyone else disagrees with that recommendation - the American Cancer Society, the professional organizations of radiologists and breast surgeons, etc. Unfortunately, my MD sort of vaguely went along with it and didn't tailor her recommendations to my situation nor did she give me an opportunity to discuss it. On the other hand, mine was very fast growing so it might not have made a difference.
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Regarding the bras - the 2 zip up sports bras I purchased through the breast center are non inexpensive but insurance covered them. They are both very well made and will last a LONG time. I wore them after my biopsies and found them quite comfortable even to sleep in, which I wouldn't normally have done.
The thing I really like is that they have little pockets at the bottom designed to hold drains but that are just the right size (and for me, location) for small ice packs. I can have an ice pack on while running errands or meeting clients and no one is the wiser.
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I had a lumpectomy with 18 nodes removed and 3 were positive. My tumor was 1.7 cm but was very aggressive. I'm 35 and will be starting chemo in about 2-3 weeks followed by radiation and then hormone therapy. I am extremely sore, still can't extend my arm all the way. Worst part still though is having an 11 month old mommas boy! This has been quite the journey thus far...I'm positive though the outcome will be a good one. I have relied on these forums since day one!! Good luck to all of you and God bless!
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Hi, well only 2 more days until surgery, LX and SNB. I feel like everything will go fine with that. Just trying to not get too worked up over the path results. I know the UL and MRI didn't show any issues with my nodes, but I am worried since the initial path report stated LVI. So, will or will it not be chemo? When I asked my BS about the Oncotype test, he said they mostly likely wouldn't do it. I will bring it up again when I meet with my BO, but wondered about the comment. Not sure who will go over my path report and how long after surgery it will be before that happens. I already have a follow up appointment with my BS for next Tuesday. My friend will be with me for the dreaded nipple shots...whatever it's called, I've forgotten at this point, probably because I just need to block it out.
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Welcome Carrie79, With all of the nodes removed, I understand why it is so difficult for you to extend your arm. While you need to do the arm exercises to keep your mobility, don't hurt yourself.... you just had a big surgery. Do you know what chemo protocol you will be having? I'm sure this entire experience is difficult with an 11 month old who needs you! My boys are 17, 15 and 12... so, in theory, they are self sufficient.
CarrieK, You got great answers to your questions, so I won't repeat. I highly recommend that you ask your BS for a phone number to call when you have questions. I always have questions. :-) Also, my PS recommends 1 week recovery for every hour of surgery. This might help you determine when you should start feeling more like your regular self.
Peggy, My rearranged breasts feel normal.... soft and squishy.... but they are still higher than before. I haven't loss sensitivity due to the surgery. The bad girl is getting red and sore from rads though.
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BikerBabe, HUGS!!! Quite often the Oncotype is used to determine whether chemo is necessary. I think there are other criteria that used also. But I would ask how come the test isn't being done. I insisted. My surgeon called me with my path report 2 days after my LX. That was awfully nice. I didn't have nipple shots. I did have wire locators inserted and with lidocaine not bad. My surgeon did the dye shots also preceded by lidocaine (what a nice little drug!). Everything was done to make sure I was as comfortable as possible. And I was.
HUGS to you and fingers crossed that no chemo is necessary.
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PoppyK, perky sounds good! I'm droopy. Oh well. Slather on the Aquaphor to keep your bad girl moisturized during rads. Aren't you almost done? What will you do with all that time? HUGS!
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BikerBabe - I would pretty much INSIST on the Oncotype. I can see no good reason not to do it and it seems to be pretty much standard of care these days.
Good luck with any last minute arrangement, etc. I hope all goes very smoothly for you. Crossing my fingers for clean margins and beautifully clear nodes.
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