Lumpectomy Lounge....let's talk!
Comments
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Kayfry, Glad to see you've gotten great responses to your questions. If your remaining breast tissue doesn't settle in to leave you with a result you are happy with, there is also fat grafting. You may want to talk to your PS about your options.
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Kay, sometimes it helps to just make a list in your notebook of what you're concerned about - dents, etc. Then your mind can let go of trying to remember the issue and move on to something else. Theoretically, at least.
I was told the same things by my RO (left side, also) about the side effects. She also explained that since the breast isn't as big they don't have to 'push' the radiation through as much tissue to deliver the actual dosage, so we tend not to have as many effects. That was very reassuring to me and not something I'd encountered in any of my reading.
She did tell me that the breast could be firmer for up to a year afterwards (I am NOT happy about that but it's better than taking it off) but that it should return to 'normal' over time.
You could also ask your RO about breath-holding techniques being used to lift the target area away from the heart & lungs. If you need info on it, PM me. I may be able to figure out a way to post the articles I've read on here as well but I'm not counting on it.
For all of you waiting out the weekend for your pathology results, hang in there. This might be a good time to seek out a light-hearted film with a close friend or spouse. Get outdoors and get some fresh air, weather permitting. Kay, enjoy your time with your horse. Even if you don't ride I'm sure some stall time together would be welcome.
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Ladies, I need some calming words, if somebody has any. My anxiety is getting the best of me.
My lumpectomy with SNB was on Monday and my surgeon told me to call his office for the results on Wednesday afternoon. All day long on Wednesday I was shaking with anxiety. When I finally called, I was told the results were not in yet and to call on Thursday. My Thursday was filled with anxiety once again, and when I called - same news: not ready yet, call Friday.
I went back to the office today, but took 1/2 day vacation, so I could be home to call the doctor. I called - not ready yet. I was told to call in an hour, just before the office closes. My pulse and blood pressure must be through the roof. I called have hour ago; they put me on hold so they could call the pathology. The pathologist has to "run more stains", the results will be ready tomorrow, they will call me in the morning.
Now I'm even more upset wondering why they have to "run more stains". What does it mean? Is it something bad?
Did any of you have similar experiences?
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Hopeful, they tried me on the breath-holding technique before my rads and apparently that didn't make a difference so I did not hold my breath.
I agree about writing things down. Then you can put them out of your mind (it says here) until the time comes to meet with the BS.
I must say that I sure haven't noticed any firmness - I was hard for awhile but that's been gone for a couple months. Now I'm nice, squishy and floppy (what little there is of me) just like the other side
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Peggy, I can't imagine how difficult it must have been to be dealing with a desperately ill husband and your own cancer/radiation therapy at the same time. What doesn't kill us makes us stronger, I hope. I am also juggling worrying about my cancer treatment with worrying much more about my daughter and her husband, who has MS and who suffered a devastating spinal exacerbation several weeks before my cancer Dx, which has left him, so far, paraplegic at age 41, battling a MRSA infection with compromised immune system due to treatments, and they have a little boy, almost 4, and our daughter, a veterinarian, has a full-time job. And they live in Brooklyn, NY, too far from family to make it easy for us or our son-in-law's folks to pitch in, though we have. And at the same time juggling worries about my 93-year-old mother, steadily losing her memory in Florida. Gives new meaning to the term "sandwich generation"!
The travel time to radiation is a huge issue for me, although I'm lucky that Hopkins has a satellite complex a bit closer to us, in a suburban setting and only about a 40-minute drive instead of an hour, if I can avoid rush hour traffic. I can do most of my radiation treatments there. If I schedule in off-rush hour times, I'll still spend close to an hour and a half a day driving to and from the 20-minute or less treatments, and I'm trying to figure out how to do this and still work and have a life. Still, it's only, I think, something like 16 treatments. I'm almost your age (64), with a whole lifetime of dents and scratches already (from a lifetime of horses, among other things), and I don't need to have perfect boobs, which I've never had anyway. If I'm lucky enough not to require further surgery for missed cancer cells, I'll count my blessings and move on, I think. If there's something relatively minor, in the way of fat grafting, that I could consider, I'll at least think about it, maybe, down the road. I'm pretty done with BC already, which just goes to show I'm not a very patient person, I guess
I'm also guessing most everyone here feels the same way. Thanks for the hugs, beaming some right back at you. I'll be careful about the saddle-lifting.0 -
PoppyK, thank you, I will ask about fat-grafting if it comes to that.
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Peggy, I'm really glad to know your went back to its normal texture relatively quickly. Thank you!
BB, not sure about the staining but it sounds as though they are trying to determine some of the characteristics of what was removed. I will point out that with DCIS it's really unlikely that you've got lymph node involvement, which would be one of the biggest concerns, so try not to let that stress you too much.
I hope someone else will be able to chime in with some insight on the staining question.
However I think it's truly awful the way you've been kept dangling. Can you call the surgeon's office and demand some reliable answers? If you don't feel up to it, maybe your husband could? I really wouldn't take no for an answer at this point. Good luck - I hope you get some answers TODAY.
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All great advice, Hopeful. I have heard about that breathing trick and would love to know more about it. It helps to just learn of anything one can actively do to help get through all this.
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KayFry, you are the one who has a lot on their plate. How devastating for your daughter. Is there hope that the paralysis will dissipate? And having your mother so far away - not good either. Is there a chance you could move your mother up near you? That's what my hubby's brother did with his in-laws. And they went to Minnesota from the Carolinas. That would help you in a way. At least you could keep an eye on her. You are really sandwiched. I had only hubby to worry about. Kids are fantastic though on the west coast. No wonder you are so stressed out. And it all seems to be out of your control which makes it worse.
Kay, that isn't really a breathing trick. It is a technique that radiologists can sometimes have you use IF you qualify for it. They test for it when they do your initial setup if they suspect you could qualify.Hopeful, texture on my breast from radiation was never an issue. It always was normal. Aquaphor was to prevent damage that might possibly occur. I was lucky!
HUGS, Ladies!
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BB..so sorry you are going thru this. Hopefully you will receive good news in the morning. I don't think the docs have any idea how much stress we go thru just waiting for information.
I ran across this clip of a film that is coming to PBS in the Spring...it was on my BS twitter page. Looks really interesting.
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Two weeks post lumpectomy (with a big lump--9cmX4cmX2CM) and sentinel node. High grade, Stage 0, all enclosed DCIS, clear margins, clear nodes, HER2+. Kaiser team is pushing radiation, and I am resisting. There's no difference in survival at 15 years. . . .Any experiences or thoughts on how to navigate this? Most the info I have been able to find on HER2+ is for people with more advanced cancers. Thanks,
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BB they were probably just running behind. If you have DCIS I highly doubt anything crazy is going to show up.
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PlantWoman, Why are you resisting radiation? It's certainly your choice but it is a good treatment. Talk with your BS, MO and RO and find out why they think you should (or should not) have radiation and see if those reasons resonate with you. If they don't, then do what you feel is right for you! You might consider checking out the Fall 2014 Rads forum here. Or Winter 2014-2015 Rads forum.
I also found this forum for HER2+ Click --> HER2+ Forums
There are many women who will be able to share their experiences with you. One thing that always helps is to make sure your profile shows your diagnosis and treatments thus far and to make them public.
HUGS!!!
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Peggy, it has been one heckuva year, and all of the tough stuff in only about 3 months. My horse had a big sinus infection in the fall too, which briefly recurred right before my surgery, but luckily he seems fine now! Bad karma? I dunno. We still hope that our son-in-law will recover at least some of the function he's lost, but it's discouraging that he's had really no progress so far. Am working on getting them down to Hopkins for a consult—I sound like I should be doing PR for Johns Hopkins professionally, but Hopkins basically saved my husband from a crippling back condition several years ago, and they have one of the premier centers in the country for dealing with our son-in-law's condition. My mother is a problem, because she absolutely hates winter weather and loves living where she has been for the last 65-some years. She is in an assisted living place, but yes, it's hard having her so far away, our daughter in NY and our son (both awesome kids, like yours) lives in Los Angeles. Hard to be so spread out.
I'm really curious how one "qualifies" for the breathing technique. Guess I will find out soon enough.
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Nash, thank you. Here's the working link for the film Cancer film on PBS I'll keep my eyes open for it.
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KayFRy, they do x-rays-scans and measure how the breathing helps raise your chest up or doesn't. But it's all very precise.
Glad the horse is okay. I've heard only good things about Johns Hopkins - promote away!
At least your mother isn't on her own which is what I thought. Even so, I know it would be much better if she was close by. Too bad she doesn't understand how much it would help you.
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thanks Peggy....I never can get those pesky links right!
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Nash, look right above where you type. Right after the little "mountain" picture thingy is the paperclip-like thing. Click that. That is where your link goes. What's interesting is that the link showed up just fine in my email notification
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I have not been wearing a bra unless I go somewhere, then I wear a sports bra. No one told me I needed to wear a bra. I don't wear it if I'm sleeping or laying down. Is that bad? Am I supposed to have a bra on all the time ?
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Hi, Shelley - Every surgeon has different discharge instructions post-lumpectomy. As a rule of thumb, many suggest wearing a soft, supportive sports bra for comfort after the lx. I was advised to wear said bra 24/7 for a few days after my core biopsies and expect to do so after my lumpectomy. I can't sleep in a regular bra but have found the sports bra very comfortable to sleep in (to my surprise).
If you weren't advised to do so, perhaps your surgeon doesn't feel that it's necessary. However, many women find the sports bra provides a bit of protection, a touch of compression and enhances overall comfort.
However, if you find that it rubs against any of your incisions (especially the SNB incision, you'll want to either re-think it OR use some cushioning or whatever between your incision and the bra.
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Even *I* wore a bra (Genie bra) after my lumpectomy and I'm an A cup. I wore nothing during my rads though. Whatever is comfortable and provides the support you need at that particular time - go for it!
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You know, Peggy, I still cannot get my mind around not wearing a bra for 6 weeks or so of rads., especially since I'll be doing it in the summer. Yuck. Winter I could handle, probably. Sometimes the annoyances and indignities associated with this disease seem absolutely endless. And so many relate to such personal factors - hair loss, scarring our breasts, tattooing our chests, sunburning our breasts. Why couldn't it be our backs or our ankles??? (wink)
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Hopeful, then wear a bra. For me it was easier to go braless. Nobody told me not to wear a bra. One reason I didn't is because my SNB was still annoying. Not hurting - just irritating. BTW, the tattoos are barely noticeable. Mine are tiny dots. And they are below my braline so don't show even in a bathing suit etc. A non-issues in my case. I guess I look at all that has been done as things to cure me of BC, so I'm fine with it. I'm positive a lot of women don't feel the same way. But this works for me
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I just googled genie bra. Looks like they sell them at bed bath and beyond. I will get one tomorrow
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They sell Genie Bras at Target, too. I wore one once it felt okay to wiggle into one. Right after surgery, I wore the binder they sent me home in or a very soft Bali bra without wires. They sell a less expensive version of it at Target, too. My favorite was still the front zip bra, I had big incisions on both breasts, similar to what they do with a breast reduction.... plus that pesky incision from the node biopsy.
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I got my Genie bras at RiteAid. They are soft and comfy. I had a sports bra but it was not as good as the Genie bra. I didn't need much support.
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Peggy - thanks. I'll do whatever feels best but SO many women comment about going braless and not wanting anything on their skin during that time. I'll just have to play it by ear but they're talking about radiating the axilla and supraclavicular nodes, so there's a lot of skin involved.
I've got my zip up sports bras and I might line them with blanket binding satin or some such. I always feel claustrophobic trying to get in/out of the pull on type - and wouldn't be surprised if I got stuck in on someday!
For those who might want something designed for post surgical wear - your insurance will probably cover at least a couple. If you buy them through a shop in your hospital's breast care center they will bill the insurance for you.
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On the subject of bras, I've had a little "enlightenment" since my diagnosis, so I will suggest a couple more for post-lumpectomy. Maybe they will also work for radiation therapy, we'll see! I have always, for years, worn one of several models of Victoria's Secret underwire bras because I found a few that fit me well and didn't look terrible. But I doubt I'll go back to them, even once I've finished all my treatment, now that I've discovered the Coobie bra and the Handfuls bra. Both of these are seamless, stretchy sport bra types, with inside pockets that contain removable lightweight pads but could also hold prosthetics in place, so I understand. Or you could take the pads that come with them out and just wear them au natural. Since the day of my surgery, I have literally been wearing this Coobie "comfort bra" 24/7, except for a few minutes the morning I got my first shower. It's so comfortable that sleeping in it is no problem, and I think it's actually helped provide a little protection and stability while I heal. I slightly prefer the pads that come with the Handfuls bras, simply because they seem to fit a little bit better, are softer and less flattening, but you can easily interchange them (I have a set of Handfuls pads in my Coobie now). The Coobie is stretchier, and the model I have on has wider, fixed straps that don't dig into your shoulders at all (important for me because I also have an old separated shoulder on the same side as my lx). But they have a number of different styles, as well as padded camis. The material of the Handfuls seems sturdier and a little less stretchy; I think it may be more durable but haven't worn them long enough to say for sure. Both of them pull on & off over your head, but it's easy to do, was even easy for me in the recovery room right after surgery. The Handfuls is pricier, but the Coobie bra is quite inexpensive. Even though they aren't "mastectomy bras," I think a lot of cancer survivors swear by them, and they seem a bit more stylish than the frumpy mastectomy bras I've seen. For post-lumpectomy, you can mix & match and rearrange pads however you like to even things out. For modestly-endowed ladies like me, these are fantastic. The Handfuls are even designed specifically for small-breasted, active women, but I think they fit at least up to a C cup. They don't ride up, don't irritate my incision at all, don't flatten, and move with me. You can find them both online.
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Hopeful, I don't think you'll want satin near you at all. Quite a number of women wear men's undershirt under their bras. The satin will cause you to sweat, I think, and that won't be comfortable.
Kay, glad you found the right bra for you. I've been wearing a padded cami I get at Walmart for less than $6 most of the time now. It's junior sizing and the body of the cami is snug. It's also nice and long. I do wear bras on occasion but the camis are really nice to wear under my turtlenecks and sweatshirts (all 3 together - I get cold easily). I find these camis don't pull up as much as my Genie bra did.
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Hello.
I had a partial mastectomy on the 13 of January and I have my follow up on the 21st. I was expecting an incision about an inch long plus an incision under armpit. But the one on my breast goes from my nipple straight across to my side (4-5 inches) would everyone that's had their op tell me how big yours is please. I'm letting my mind wander now! I didn't't get I speak of the surgeon as I had a migraine.
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