Lumpectomy Lounge....let's talk!
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We're about 35-40 minutes south of Boston so we are getting all of the coastal storms. I have to say the one good thing about these surgeries is that I have not had to shovel one bit of snow! And, we have been very fortunate that we haven't loss our power (knock on wood). A year or two ago we lost power for five days. It was horrible! I can handle no lights and somewhat tolerate no heat, but I draw the line when it comes to no running water or working toilets. When I know there is a storm coming I fill both bath tubs with water, just in case. And we have a pool to get water if we need it, but that really only helps when we lose power in the summer. I must say that this season has been an adventure for everyone in the state.0 -
Shaz, it is scary. I don't recall my DIL mentioning using a barrier during sex (probably not something you talk to your mother-in-law about) but I guess it makes sense, sort of. I'm so beyond childbearing age I didn't realize what your mirena was! That does sound uncomfortable. Do keep in mind that not everyone gets SEs from chemo (except maybe losing hair). And if you do have SEs you likely won't have every single one listed! Other ladies can speak better to that than me. HUGS!!!!
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Rekidal, my friend lives in Waltham. Power outages are always bad. I'm glad you haven't had any. Probably a good thing that the snow didn't arrive until the trees had shed their leaves and that you've missed ice storms (aren't they horrid?). Make sure to buy your t-shirt saying "I survived Winter 2015!"
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- Thanks Peggy. Hmm I have no idea how I've managed to number my post! I can't undo it! I'm using my phone and it always does its own thing! Especially respelling words!
- How long ago was you DIL's cancer? I'd they operate? Sounds awful.
- Rekidal, and my other sisters over there. It's been a real eye opener reading all your posts about the weather! Must be horrid, especially being stuck without power for so long.
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Hi Kayfry, I guess I am lucky to be generously endowed, since they have taken quite a bit of tissue between the biopsy and the lumpectomies. I cannot see any difference right now because I was still swollen from the first lx to the second. I don't really know how long the swelling usually lasts since the surgeries were so close together. Now with this one being less than 2 weeks from my last one I am beginning to think that I will be swollen and black/blue/purple and red into April. As far as the hormone therapy, the first time I met with my BS she did say that she believes Tamoxifen and 6 1/2 weeks of radiation would be recommended. While I wait for Monday to arrive, I am just hoping that she will recommend another lx, although I am mentally preparing for both scenarios.
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Shaz, ya gotta love what phones do (sometimes)! Today was my DIL's TWO YEARS CANCER FREE day! She had surgery and then chemo (she does not have a bag!) . She's 2500 miles away and I couldn't be with her, so DH and I sent her the softest, cuddliest stuffed animal we could find to comfort her while she sat through her chemo. She said she loved it. I have never met anyone who had such a positive attitude about chemo. Every session she told the chemo what it was to do (kill the cancer). It wasn't a breeze, but she made it through pretty good. Your chemo boards will give you lots of hints and things to do to help you get through your chemo. You CAN do it! And you are doing it because you want to kill the cancer - keep that in mind! HUGS!
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Peggy, the state will probably be selling the t-shirts to re-coop some of the money spent in snow removal. I'll have to do a google search.
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Rekidal, It will likely take awhile before the swelling goes down. And if you do have radiation, they want your swelling to be down somewhat. Like you, I'd also prepare for both scenarios and be very happy if the surgeon says LX!! When I met with my BS the first time, I was positive I'd have a Mx and was amazed that that wasn't what she thought I should do. I was also prepared to have chemo which my oncotype score said was unnecessary. Many hugs and not too much black and blue and red
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Rekidal, I hadn't thought about the state doing t-shirt sales. But it is a really good idea! Especially if you have a governor who thinks outside the box. I like it!
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Alrighty, we can't complain to much about the snow...we live in new England, LOL, I'm not sure why, but we do...our timing has been great about no shoveling, yeah.... This year seems like they are all costal storms, some years it's up north. And yes, more snow this Sunday. BUT, February is almost over, that means spring is on it's way
I've already started the count down, us bikers get pretty antsy about this time of year, we just want to get out and ride.The swelling is just about gone now for me, I noticed in the shower this morning. But she still looks ok, not too misshaped.
Shaz, yes, I'm pretty scared too, but it will be over before we know it. And I had same reaction, I wanted to curl up in a ball and pretend none of this happening.
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rekidal, I'm being treated at UCSF, and their standard has been femara for pre and post menopausal. There of course are differences among docs and centers, but I think the latest data from the San antonio conference supports femara use as decreasing recurrence (with ovarian suppression) in pre menopausal women, without in post menopausal. Check the news or newest research area of the site here for the study and data.
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We are getting just enough snow here in TN to keep it interesting...
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Nash, that's pretty - if you don't have to drive in it. Sometimes a little snow is a lot more dangerous than 6" of the stuff. All the "oil" in and on the roads rises up, plus the freezing of the slush and then you're ice skating. ABC World News Tonight was showing all the accidents in TN tonight. Stay in if you can!!!
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Gatomal and rekidal, I wasn't very clear about the hormonal therapy. I believe the discrepancy here is that only tamoxifen is currently approved for DCIS only. I guess that's more of a factor than whether you're pre or post-menopausal. I find that when I look online, too, but that doesn't mean the standard won't change, since all of this treatment seems to be evolving fairly fast. Since my dx was pure DCIS, that's probably why my Johns Hopkins BS said he'd recommend tamoxifen if my ER & PR receptors were positive. Which, as it turned out, they weren't.
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Kay, I've also heard that sometimes women go from AIs to tamoxifen after 5 years. Apparently lots of flexibility in how these drugs are prescribed - all working towards the same goal of keeping BC at bay.
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Peggy, I think you're right that this is in flux. Just looking around online just now to check my facts, I found the opposite, that some women are being put on AIs after taking tamoxifen for 5 years. As with anything, I guess your own BS and, if applicable, your MO is the person to ask.
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I'm just glad there are options for us.
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Nash, beautiful picture. How often do you get snow? Kayfry, I guess it is good that Tamoxifen can be taken if you are pre or post-menopausal since my status is questionable. If you go to the Susan G Komen site it says that Tamoxifen is usually not recommended for women who had a mastectomy for DCIS, even if they are ER+. So, it really does seem like each doctor has their own way of treating.
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I do get the feeling sometimes that treating BC, any cancer, is more art than science. It's amazing what that art has done, though, isn't it?
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Yes, the good thing is that we have options. And the bad thing is that we have options, and no one really seems to know what the best option is
Well, at least with DCIS, that's the case. If you read some articles, which I just did for a bit, it will make your head explode. They can't even agree whether to call it "cancer," though most everyone agrees it's cancer at a very early stage. They don't know when or if your DCIS might morph into invasive cancer. They don't know what therapies you really need, so the trend is to do as much as possible, even in the absence of good evidence that it improves results (that is, survival). It leaves those of us with DCIS kind of groping around in the dark for the right path. It feels as if, if we could just freeze our DCIS for 5 or 10 years, there will be answers, but of course we have to deal with it now.
None of this applies to anyone with IDC or any other form of invasive bc, where the need for aggressive treatment seems more clear-cut. And most of us with DCIS will go with the current recommended treatments, because who wants to take a chance? And we will come out on the other side knowing we did everything we could to prevent having to deal with this, or worse, in the future. And I'm pretty sure we'll be fine, which is the main thing. But the lack of definitive medical evidence for the treatments, with their SE's, anxiety & discomfort, and some disfigurement, is a little unsettling, at least to me. Probably just cranky tonight, never mind.
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You're entitled to be cranky, Kay. It IS confusing. I've also heard that there is some disagreement about DCIS. One of mine was DCIS. Since I also had IDC (which was the primary - the DCIS was a surprise), everything got zapped and gets hormoned (is that a word?). But like you, whatever it takes, I'll do it. HUGS. Must be time for a big glass of wine to end the evening. MORE HUGS!!!
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Hi Rekidal -
You aren't kidding, the snow has been completely insane in Mass. Where in Mass do you live? I live in Burlington. I don't blame you, I wouldn't want to have 3 surgeries in 4 weeks - that is hard, I am glad that you have decided to go with the lumpectomy though over the mastectomy. I think a little reluctance to start taking a new medication, especially if you haven't taken any before is very understandable. I am now on Tamoxifen -almost at the end of my first month of it. I am not going to look at the bigger picture of it - taking it for 5 years to then be followed by a switch or 5 more years of the same. If I looked at the bigger picture, I would get overwhelmed. Like some of the others here, I had my surgery and then within about a month, around 10/28/14, I met with my radiation oncologist. My rads started in early Nov until Dec 19th. I met with the medical oncologist in mid-Oct, before meeting my radiation oncologist. On thisFriday - it will be two months since my radiation ended. Nash, who has posted here recently are fairly much on the same schedule. Hi Nash!
Mariebernice6234
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Hi Marie! Hope you are doing well. Can you believe we made it thru all this? No SE's for me so far, keeping my fingers and toes crossed. Hope the same for you.
rekidal...we rarely get snow so it's a big deal here. We aren't equipped for it so hence a lot of accidents as Peggy mentioned. At the mere mention of possible snow all the grocery stores empty and the kiddos get out of school. My DD has been home all week and is out the rest of the week. It's actually been pretty nice having her and DH home....kinda like a mini stay-cation. It's currently 12 degrees and going down to 1 tonight! Brrrrrr.....
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Marie, I live in Carver so we have been getting all of the coastal snow, which we don't always get. I'm sure you have gotten a ton as well. I was wondering if you have had any noticeable side effects from the medicine? I am still not sure if I will be having the lumpectomy even though the surgery is booked. I haven't talked to my surgeon about the path results as she is on a family cruise. When we discussed my options, at our first meeting, she didn't feel I needed an mx but told me that it is a personal choice. She said that a lot of women choose that option for peace of mind. I will be speaking with her on Monday and asking her a lot of questions. If she does recommend an mx, then I will go with her recommendation.
Nash, it is the same here at the grocery stores. It cracks me up! Keep warm and be careful on the roads.
I'd like to ask you all a few questions about radiation treatments. I am really hoping that my margins are clear soon and am just a bit curious. How long after surgery did you begin treatments? Did you have to wait 4 weeks, 6 weeks? Did they allow you to miss any days once treatment started?
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rekidal...I began radiation 1 month after lx. I had internal rads which was twice a day for 5 days. So I couldn't miss any days.
My BS told me that lx plus radiation was just as effective as mx. Some mx require radiation and some don't. Not sure what The criteria is
Sorry you are having to go thru this again. I'll be praying for clear margins!
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Rekidal,
We are on similar schedules. I was diagnosed a week after you (12/26) but put off my lumpectomy until Feb 12 because I was moving out and leaving my abusive husband. My BS said he didn't think the tumor was aggressive and fast growing so he said it wouldn't hurt to wait six weeks.
I'm impressed that you already received your pathology report from Feb 12. I'm still waiting and the BS said it could be 10 days...so maybe not until next week! UGH...
TBH, it didn't even occur to me that I might have to have a second lumpectomy if the margins weren't clear. You poor dear and now to think about a third one. I'm praying for you, as well as for all the ladies on this board.
My BS said at my initial appointment that I wouldn't meet with the oncologist until after the lumpectomy because they want "official" pathology reports from the surgery rather than from the biopsy. I've seen y'all post about medical Os and R Os.... I didn't even know there was a difference. I've got so much to learn for this cancer journey.
Like you I don't like the idea of medicine long term and prefer a natural approach. But I do realize that for some these medications are the difference between life and death!
Anyway, just wanted to say "hello" and to say that meeting with the oncologist after surgery is what I'll be doing as well.
Stay warm everyone! I'm so ready for spring!!
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Rekidal, I started radiation about 6 weeks after my Lx. I believe you can miss a day here and there but I didn't since I didn't want any delays in finishing. Aside from some fatigue and a bit "tan" from reddened hair follicles, I had no problems with radiation. In and out in 15 minutes or so.
All the schools around me are closed today due to really horrid windchills of nearly minus 30°F. While we have snow, we've missed the heavy stuff that you poor people south and east of me have gotten. Stay warm and safe!!
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Allison, often they want you to wait to meet with the MO (and RO) until you not only get your path report but your Oncotype results back. I was so lucky that I had my path report back in 2 days - the BS called me in the evening! They hadn't sent my specimen out for Oncotype testing right away and I insisted on it so I didn't get those results until just barely before I started rads (had rads and MO appt the same day!). If my score had been higher, I wouldn't have started rads but chemo instead.
Rekidal, what hard decisions you're having to make. I hope that your BS can reassure you on whether you stay with another lx or go to an mx. HUGS!!
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Peggy,
Is Oncotype testing done routinely ? Again, I have so much to learn.
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rekidal, Lx vs. Mx is definitely a personal choice, and depends on your personal pathology and other factors, but I notice that your Dx is still DCIS. Mine is too, and even though it's true that some women—maybe even a lot of women—with the diagnosis of DCIS choose Mx for peace of mind, many BSs, including mine, think that could be considered over-treatment. Because it's "in situ," it's by definition non-invasive, unable to leave the duct and travel anywhere else in the body. If your surgeon is able to get all clear margins and still leave a decent cosmetic result, and then if you follow that with rads (and hormone therapy after that, which you could choose to do since your pathology is ER & PR+), your chance of recurrence should be very, very low. The overall survival rate is no better for women who get Mx than for those who follow the above plan. It's not zero chance, but no woman with breasts has a zero chance of getting bc at some time in her life. And even in the unlikely event that you would get a recurrence, or a new DCIS or even invasive bc, since you'll be monitoring closely, you'd be in a position to treat that effectively if it were to occur, which it probably won't.
I was diagnosed only a week or so before you, with DCIS grade 3 with necrosis, etc. After my Lx, the pathologists at Johns Hopkins interpreted the grade to be grade 2 rather than grade 3 (which local PA pathologists had said after my biopsy pathology), but the important thing was that it was still DCIS. The only reason that Mx even crossed my mind was that I have small breasts so not that much tissue to spare. But that was outweighed by the fact that my recovery from Lx was easy and fast. It sucks that it's taking multiple Lx for you to get that last clear margin, but it's still a much less invasive surgery than Mx.
I will be starting rads 7 weeks after Lx, and I just have to do 4 weeks because it's the "hypo-fractionated" protocol, with 15 whole breast treatments followed by 4 boosts (I think, still have to finalize with RO). I've been told that they prefer you not miss any treatments, but if you have to miss a day because of weather, personal issues, or to give your skin a rest, they're okay with that. I'm looking forward to powering through rads and moving on with my life!
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