Lumpectomy Lounge....let's talk!
Comments
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kayfry....what a relief. So happy for your good news. Hoping the rads will take care of that margin.
shelley...good news that the nodes were clear! I am so sorry you have to go back. I know you must be so exhausted.
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Hopeful, That dart board is a fantastic idea! We have an area of our backyard where we do archery and throw tomahawks and knives at targets. It's very therapeutic! Of course the dogs are secured in a separate area.
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It just says lymphovascular invasion: present. It doesn't say anything in more detail. The surgeon said it may drive some of my treatment such as chemo. There's not a ton of info out there about it but it doesn't sound good. Ugh
Nuclear grade and mitotic count did not change from my previous grade. It was the tubular(?) that went from 2 to 3.
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I am so very relieved by my overall results that I hesitate to bother anyone with my remaining anxiety, but . . . I am wondering what that one close margin, less than 1 mm, will mean. Searching online as I always do, I see that this is a very controversial question in breast cancer treatment now.
At first, when I got my diagnosis, I was very bothered by the idea that I needed radiation, and I'm still not loving it, but I am accepting it. Then, when I had my lumpectomy, I was at first a little freaked out with what my small breast looked like after surgery, but I'm pretty okay with that now. I am delighted that the scary Grade 3 has now become Grade 2, but I still am totally onboard with radiation. Now, I'm worried that my surgeon will feel he needs to go in and take more tissue from my breast, resulting in a more deformed breast that will be harder to live with. I know I can always go back later and try to work with the PSs to get a better cosmetic result, but if I can avoid re-excision, I will be so much happier. I hope that since I'm going to have radiation, my BS will be okay with that one close margin, but I probably won't find out until Monday. I hope we will have a discussion then about risk of recurrence in my particular case, vs. the possibility that more deformity of my breast will result in the need for even more surgery in the future. I do feel much better tonight, because a lot of my worst fears have been allayed. But there is still that one uncertainty that remains. This thing is hard.
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Shelley, If your nodes are clear, even with LVI, it is good news! I'm sure you will learn so much more at your next appointment. I recommend you ask for the Oncotype DX test. It takes about 2 weeks to get the results. BTW, I love your avatar!
I just want to add, that if any of you end up in chemoland, it can be done. And it's nothing like the horrible stuff they show in the movies.
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KayFry, great news. So glad to hear it.
Shelley, it seems to be rather common that the surgeons want to go back in and get those margins perfect even if clear. It sucks but you'll find it's a relief knowing the margins are as big as possible. But the rest is good, isn't it?
HUGS ladies!
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Poppy, they have sent off for the Oncotype test. Should be back in a few weeks. I don't know if LVI automatically buys me a ticket to chemo. I suspect it does.
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Hi Kayfry, I know what you mean about all the concerns and fears. I hope you don't have to do a reexcision, though I guess if it's necessary it will feel better to have done it.
I am 14 days out from surgery and I'm feeling really surprised at how hard it is. I thought lumpectomy would be so much easier. My mom made it look like a piece of cake. Maybe it's because they took so much tissue. I didn't even realize until I got my hospital records last week and it said 9.5cm x 6.5cm x 2cm. Is that much bigger than everyone else's? What were yours, everyone?
My breast just feels so weird. If I'm lying down I can't raise up my arm like to touch my face. It is so painful. And it's hard to describe what my breast feels like but kind of unsupported in some way, maybe because I have so much fluid that hasn't been drained. My surgeon is 2.5 hours away so I've never had it drained though I did a check up and he said it would be good to drain it but that the breast center won't let him do it, only if I came on another day to his office could I do it. I've heard it's controversial to drain it or not to drain it so I'm just leaving it but I"m SO uncomfortable.
Are you guys able to go for walks etc? I feel so much pain from the bumpiness of walking that I can't but I'm getting sore from not walking around.
How many days out are you guys and how do you feel?
I just thought things would be so much better by now. Thanks for your support.
Also I read in the surgery records that they took out two lymph nodes but in the lab records they only tested one lymph node. What on earth! What happened to my other lymph node?? The surgeon has not answered my message about that.
I hope you are all feeling better than me! Take care x
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Hi Lucy, The needle for the tracer was like a sting that lasts for a minute or so but very minor for me. I was scared like crazy and it wasn't that bad at all. The wire localization was bad for me because they put three wires. Trying to get a mammogram was really difficult after because it was so close to my armpit. I really hated that part.
Carrie, That is a lot of waiting. Can they move the procedures closer together? I didn't mind some of the waiting- I read a kindle book- but wouldn't want too much. My surgery was at 12 and the no eating and drinking wasn't as bad as I thought. They had me come in the day before for the tracer needle and to take blood. Then I checked in at 7am and got the gamma pictures of the tracer. Then at 10 was the wire localization. Then at 12 was the surgery. This didn't feel like much waiting at all. I hope this helps!
The surgery day will not be as bad as you think. Everyone at the hospital helps you through it.
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tgtg, Do you mean that you've had seroma for two years? I'm freaking out about this because I've had it for six days and it is AWFUL! It has made my skin super sensitive too somehow so that I'm so worried about radiation therapy if my skin already feels like this when I haven't even started yet. Does anyone know more about seromas?
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Hi All, Do you think I'm having so much discomfort because I've been wearing a tank top not bra, and only wore it at night for the first few days? I don't have any comfortable bras and the incision is right by where the bra seam is at my armpit so that wouldn't work.
Also I never iced the area. Was I supposed to do that? No one told me to.
Thanks for your help! I've ordered the coobie bra so we'll see how that goes.
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Hi KayFry
Thanks for all your info. I can't eat after 11pm night before. However she did say I can have water and Gatorade in the morning. to stay hydrated.
Any good books you can recommend. I enjoy reading as well.
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Well, the tubular aspect doesn't mean a lot to me but it IS good that it wasn't the mitotic rate and nuclear grade that didn't change.
Don't sweat the LVI until you have more info, such as the Oncotype score.
(You see, this is how this goes; you get some of the info you need/want but then there's another piece you're waiting for... It DOES get old.)
Honestly, Shelley, I think things may be better than you think.
As to margins, there's an article from late 2014 on the main site that discusses that issue which may be helpful.
Hope you can all sleep better tonight. Has anyone heard from Shaz?0 -
Great news katfry and Shelley that your nodes were clear. Sorry to hear they upgraded your tumour thought Shelley
My turn. Unfortunately my sentinel node was not clear. I have more surgery booked for tuesday to remove all nodes on left side. I'm feeling shell shocked. The tumour is also larger than first thought now 2.3 cm. It is a low grade tumour though. I don't know what to do or say right now
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Poppy, did I know about your building evacuation, etc.? It sounds crazy -and kind of miserable, too.0
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Dang It Shaz. I don't know what to say but dang it. Just another speed bump in this journey.
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Oh Shaz - that's the pits. I am so very sorry about the nodes. Is there any chance that they can do axillary reverse mapping to help minimize the risk of lymphedema?
It's good that it's a low grade tumor but the rest of it's very disappointing, I know.
I was booked for a lumpectomy and full lymph node dissection in October due to a known positive node at time of dx and I was very, very unhappy about it. (Just about anyone here could testify to that.) Five days before surgery I stumbled onto a surgeon who really really understood the issues and offered me a different approach that seems to be working. I feel like I had a major reprieve. The point of all this is that I fully understand what you're looking at and what a disappointment this is. I HATE this cancer and what it does to us.
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Shaz, I'm so sorry your node wasn't clear! My sentinel node wasn't clear either, but my tumor board did not recommend going in and taking more nodes. I realize every situation is different, but my docs said the risk of lymphedema was too high to warrant doing further node dissection. Were the cancer cells encapsulated in the node? Do you know how large the cancer containing area was in your node? The amount of cancer in my sentinel node was 2.2mm, which is just slightly more than micromets. The reason I mention this, is that in many cases, no chemo is recommended if the sentinel has only micromets.
Hugs! You will learn so much more once you have your appointment with you doctor.
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From what I can remember he said because of my age and the size of the breast tumour the board recommended that they are removed as it will give me the best chance of longevity. Boy I am struggling now. I need to get my head around this.
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Shaz, I know exactly how you feel. I was shocked that one of my nodes was positive. My tumor was only 1 cm, and there was no sign of it on last year's mammo. The amount of Cancer in it was 2.1mm and combined with an Oncotype score of 23, it was decided that I needed chemo in addition to radiation. It took some time for me to deal with that news, because I knew there would be no hiding that I was sick once I started chemo. We have a similar diagnosis, and my PCP describes it as "Garden variety Breast cancer". Things could be soooo much worse. There are good treatments available and there is a high likelihood that once treatment is over, we'll never have to worry about this again. Even if it does come back in 5-10 years, there will be even better treatments available.
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Oceangirl, you'll be happier wearing a nice soft bra to support your poor breast. I'm a small A cup and even I found it more comfortable. A Genie bra, Coobie, sports bra. For those of us who never had to wear a bra it's hard to get your head around. And you should be having more range of motion than you appear to have. Yes, use ice (especially for the underarm). You should be doing exercises for your arm - "walking" your arm up a wall, gently stretching as you go. You also should be comfortable walking. (Wear that bra - no underwires!) Call your surgeon and find out what he recommends. Perhaps PT would be helpful. But it does seem to me, that you should be more comfortable by now than you are. Don't delay - make that call! HUGS!!!
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Shaz, what awful news. Once you digest it, it will be somewhat easier to cope, I'm sure. Discuss all your concerns with your BS and ask if there are alternate ways of doing things. Many hugs as you cope with this. HUGS!!!
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Oceangirl...my tumor excision was 2.8x2.6x1.2 I'm sure your discomfort is due the the larger area that you had removed. My node excision was 2.9x2.0x.1.5 Other than the node area being uncomfortable I was able to go for walks....I just limited lifting anything heavy. Even wearing a sports bra was uncomfortable especially around the underarm area. I would put a soft sock (one of those Aloe ones between my bra and underarm...it helped alleviate some of the pressure) Sorry they didn't tell you about the icing the first 24 hrs. It helps to keep the swelling down. I don't think you should be this uncomfortable 14 days out. Perhaps you should pay your BS a visit.
Shaz sorry for your news...but Sjacobs words are very comforting. There are so many treatment options and I do believe that treatments options are getting better every year.
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oceangirl, I'm so sorry you're having a hard time recovering and feeling better. I am 8 days out and feeling pretty good, though I still have soreness in my lx breast and lots of bruising. One thing that explains the difference you're feeling, I would think, is the size of your tumor that was removed. Mine, according to the report that was read to me yesterday, was 2.4 cm, which was twice as large as I was originally told after biopsy, but still much smaller than yours. Also, everyone here seems to have found that any surgery to remove one or more nodes is considerably more painful and takes longer to recover from than the surgery to the breast itself. So the fact that I had no node removal is helping me there, too, but the ladies here who have had the nodes taken all say it will get better, just takes a little longer. If you have a seroma or fluid build-up that needs to be drained, that sounds VERY uncomfortable! I can understand why you've not had that done yet, but I would definitely recommend that you start wearing a soft, supportive bra day and night for the time being. Even though I'm small and normally don't need any support, since my surgery I've been wearing a Coobie all the time, and it really helps with comfort level. That should definitely make it more comfortable for you to walk. I've been walking since the day after my surgery, and even managed "gentle" rides on my horse the past 2 days with minimal discomfort, but I wouldn't have tried it without the Coobie or something like it. All your questions are so legitimate, can you at least arrange to speak with your surgeon by phone now and begin to get some answers?
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Darn it, shaz, that is rotten news. I'm so sorry you're facing more surgery, and I'm sure this complicates things some. I'm glad it's a low grade tumor, though. I hope you soon get more answers!
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Carrie, I took my iPad Mini with me, with lots of books loaded onto it. That way if I got bored with one, I could read another! Haha, just me and my ADHD. But definitely take something you'll find absorbing and distracting to read. Also, I hope while you're waiting you'll have a comfortable chair. Mine was pretty good and also reclinable, so I was even able to try to nap, not entirely successfully. I'd barely slept the night before so it was good to close my eyes, anyway. The nurses will help you be comfortable, bringing you blankets or pillows, whatever you need. Except food, of course, unfortunately.
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Hopeful, thanks for directing me to the article links on margins. The one from April 2014 is very encouraging and in line with other information I've found. I will definitely bring this along with me to my appointment with BS on Monday. It does seem as if it takes awhile for these newer guidelines based on studies to filter down to practicing physicians—another example is the radiation protocols for DCIS/lumpectomy. I'm getting the 3-week protocol, which is preferred by all the latest standards (by "latest" I mean in the last decade or so), but most women still are only offered the longer (about 7-week) protocol of lower-dose but more treatments. It's hard for ROs who've always done it one way to feel confident in changing, apparently. One advantage, to me, of being able to get my treatment at a major research hospital like Johns Hopkins is that it seems to offer a bit more cutting-edge standard of care in some ways. So I'm hoping my BS is okay with no re-excision, even though that one margin is actually less than 1 mm (all the others are comfortably wide). According to this current standard, ANY margin, no matter how small, is just as good as wide margins in terms of outcomes and recurrence/survival. Having to go through a second surgery and lose more breast tissue if it's not going to provide any survival advantage is something I'd love to avoid.
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Shaz, take comfort in the fact that your tumor is low grade. That is really GOOD. I am praying there are no more nodes with cancer. Even if there is, there are plenty of women with node involvement that have lived.
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For those who are new to bc - the concern with lymph nodes is not just limited to the effect on prognosis, although that is a sobering matter as well.
The further treatments and treatment decisions can pack a wallop, too.
Having a lymph node dissection is a major risk factor for lymphedema, which, once it sets in, is treatable but can recur at any time. Read up on it a bit so you know what to watch for, as even sentinel node biopsy can trigger it, although is less likely to do so.
Surgeons will tell you that slender, fit women don't get lymphedema - not true. There are many women on this board who fit that description and did get it.
There is a newer technique that spares the nodes draining the arm, usually referred to as Axillary Reverse Mapping (ARM) but few surgeons have learned it yet. It's worth pressing for it, however.
Some MOs will automatically prescribe chemo for anyone node positive - but not all; the Oncotype result should really lead the discussion (or a similar test, such as Mammoprint).
Finally, recovery from full node dissection is longer, more involved and more limiting than from SNB.
I don't want to scare anyone or paint a picture of gloom and doom. However, I do want women to understand why some of us are so dismayed at Shaz's news, as well as give a heads up regarding lymphedema for those who had SNB.
Kay - I'm glad the info was helpful to you! You're indeed fortunate to be near JH and to be able to benefit from the latest findings. I hope your BS goes along with you on this.
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Shelleym1, please don't say that...my dx is similar, in just a few mins I leave for the hospital to have the radioactive injection. And to find out what time a I have to be at the hospital tomorrow. I'm so afraid of that dam report. Just taking steady deep breaths...
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