Lumpectomy Lounge....let's talk!
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That is wonderful news, Shaz!! I'm so happy for you! I know what you mean about walking on the cliffs above the sea! I grew up in Sydney and the happiest I ever feel is when I'm on a headland or cliffs above the sea with little wildflowers blowing in the wind next to me. I live in America now, but I always think of my childhood in Australia.
Does anyone know what is the benefit of Canadian protocol for radiation? Is there any benefit besides saving time by going less days for the treatment? Thanks! Is it different for young people? I am 40. The doctor actually offered that I can get it but said it would be experimental and that he thinks I shouldn't. But I was just wondering what it is all about.
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Thanks for the tip about links, PontiacPeggy!
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Hi everyone, I had to take a few hours to play catch up on the thread.
Someone was talking about having fluid ( saroma) built up in the breast. I also had that and I had a radiologist aspire it and it felt sooo much better that I never regretted having it done. I seemed to heal better after that.
I also had reconstruction by fat injection this past November and may have to have more in April- It already looks better and the scar does not rub on my bra like it did before. So if anyone is considering fat grafting I would recommend it. I had a dent which is filled in quite well. Still red- but getting better but part of that might be still from internal rads.
It always is rotten when you have to have a 2nd surgery for not clear margins- There was 4 of us dxed in 2013 with breast cancer and of the 4 of us- I was the only one who didn't have to have that 2nd surgery. My sister and I had the same surgeon but my niece and cousin had diff surgeons at diff cancer centers, so it must be common. 3 of us had BRACA tests done and we tested negative. I also had another test done for ECadherin gene which is associated with stomach cancer which I lost a sister at age 44 too- but I was also negative for that. Good thing or I would have had to have both breasts and my stomach out. UFF
Happy New Year everyone!!
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You're welcome, OceanGirl. We're so used to having links work when we just paste them in that the extra steps aren't even on our radar
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Hello to all. I have been reading everything on this board for the last couple of days, but have not responded. The information has been very helpful to me. I will tell you a little of my story. On Dec 19 I was in the shower and noticed a rather large lump in my left breast. I have had fibrocystic breasts since age 20 and I normally am not concerned with things, probably very complacent. But, on this day, I felt something wasn't quite right. I had been putting off getting my mammograms until 50, as I really don't have family history of breast cancer. (I don't know much about my biological father's side of the family since I was adopted by my father at age 2) Anyway, I was able to get into my NP office the following Monday and she sent me immediately to a local Women's care center right away for a mammogram. They did a diagnostic on my left breast and a screening on my right since I have not had a mammogram since my early 20's (I am 47). The technician came back after my screening and said that they needed to do a diagnostic on my right side because of calcifications noted. I had an ultrasound to check the left breast and it was just a benign cyst. However, the calcifications on the right were "suspicious". So they recommended guided needle biopsy. I had that procedure done on 12/26...the day after Christmas. At this point I have no clue and I'm thinking that everything is ok. I stayed home from work on 12/30 due to flu like symptoms. I got a call later that afternoon from my NP and she said come in right away, we have things to discuss. That's when she gave my diagnosis. I am very OCD of course I read everything I could on the topic. Had a consultation with a very respected BS In my area and she relieved any of my worries. Had an MRI on 1/13 and results were no additional concerns. Scheduled for lumpectomy on 1/28. I think I am lucky because they do radioactive seed localization , no wires. I will have that placed on 1/26. This has been a very helpful board, as I have had no other contact with the BS since my consultation. I am planning on continuing to work at least part time throughout. How did any of you fare with that? Thankful I found this board
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Hi Oceangirl... I'm getting ready to start rads next week, just went today to get scanned and marked. I too asked about the Canadian and got just about the same answer as you did. I'm going to look into more and see if it would be beneficial for me. I'm 47 and he said he would use on a older women, but wouldn't recommend it for someone my age. Please let me know what you learn about it, I'm kinda of a research junkie, I want to know everything. Plus I start in a week and don't want to do 33 treatments if I don't need to. Thanks
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LisaZak, welcome and we're sorry you're here but you'll find answers to most any question you have. You will likely not be able to lift more than 10 lbs for 2-3 weeks after your lumpectomy. If they are doing an SNLB, that will be totally annoying. Not really painful - just a pain. You should be able to work as long as you don't have to lift. If you have to have radiation then you may feel some fatigue. But it's all very doable. So glad they found it very early!!!! HUGS and you seem to have the positive attitude that helps immensely.
Please continue to ask questions here - we'll answer them! HUGS!!!
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id like to hear from ladies who have had TEs or implants AFTER a lumpy/rads....especiialy if in Wisconsin... would like to do a NSM on my lumpy side (to remove the dented boob and hardened radiated tissue that is painful and prevent recurrence) and a lift/implant on my good side for symmetry. Im looking for recommended surgeons in Wisconsin preferably that will accept MA coverage (im on disability)....tell me the pros and cons you have had with doing these surgeries???
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Thanks PontiacPeggy. I am a very upbeat person and deal with tragedy on a daily basis with my line of work..social work. I am very lucky in that I can do work from home and give advice from anywhere. My main concern is that I am always doing things for other people and rarely consider that I may need help from others. I just need to realize that at this point in my life I have to accept help. I think I will do ok though. I have a very close aunt who's has just been given last stage pancreatic cancer diagnosis and that is where my concern lies. I know my prognosis is almost 100% and hers is near 0. So, she is the focus of my worries. I ask for prayers for her, that she might pass on with the least discomfort. This is just a minor inconvenience in my life!! But thankful again that I can connect with people who are going through my stuff.
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LisaZak, I totally get where you are coming from. At the time of my Dx I was the fulltime (and only) carer for my DH. He has Parkinson's and congestive heart failure. I was getting no sleep (he was up 4-6 times a night and could not manage any of it on his own). When you have big responsibilities and your DX isn't too onerous, you tend to just march along, do what needs to be done, and continue with the responsibilities. DH is now in a nursing home and I am finally rested. Like you, I have a very positive attitude and that really does help. You'll do just fine. I'm sorry to hear about your aunt. That is devastating. Many hugs to you both!!
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Dear Lisa - I'm so sorry for your aunt's situation and will certainly include her in my prayers. Pancreatic cancer is a tough one and a heart-breaking diagnosis.
I'm sorry you're here but glad that a) you've caught it early and b) you're teaching yourself about seeing to your own needs. Sometimes that's a tough lesson to master (this is the voice of experience speaking) but it has life-long value.
I've not had my lx yet but I plan to have one of the others cover for me the week of surgery. It may not be an absolute necessity but I will feel better if I don't need to take care of clients while I'm trying to take care of myself, too. If I feel up to it I'll give myself the gift of some time working in my garden instead of at my desk. I think a week should more than cover it. I'll deal with chemo or radiation when I come to it - maybe cut back my hours and arrange for one of my co-workers to cover as needed. (I telecommute, so this is feasible.) The thing about all of this is that sometimes it's very hard to focus clearly on clients' needs when your mind is processing the dx, the path reports, etc., etc. You might find it a useful distraction to work - or just the opposite.
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hopeful, I have already assigned my clients to my workers. I am also a supervisor and thankfully can do that. I retained one client and he knows my situation and I have been able to have one of my girls take my place if needed. I am so blessed to have the job that I have. I can't imagine having to punch in every day. I have been set up to work from home if I need to, I have coworkers who can take care of my clients as needed. Have recently just been made aware of the blessings that I have. I know that is a God thing...and I am so thankful for that. God comes out in the most indiscreet ways, but He is just always there...that is my hope and inspiration!!
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oceangirl, I believe I'll be getting the so-called Canadian protocol here at Johns Hopkins, only they don't call it that. It's "hypo-fractionated whole breast irradiation" or something like that, and it's actually been in the news, even the popular American press like the NY Times and National Public Radio of late. It has been the recommended protocol for at least a decade but has still not been widely adopted here, apparently because it's hard for doctors who have been doing something one way with success for a long time to change easily or quickly. That's what these recent articles were saying, that even though the advantage and effectiveness of the shorter course has been known for many years, most women are not offered the option. It involves fewer treatments at a somewhat higher dose of radiation. That sounds maybe scary, but many studies have shown that it is equally effective as the longer protocol, with no more side effects. It is the difference between having to go for treatments 5 days a week for 6 or 7 weeks, or only for 3 to 4 weeks. It's not that "new," so really not experimental. Since I have to commute some 45 minutes each way to my treatments, it's a big deal to me to have it done in 3-4 weeks instead of 6-7. As far as I know, one's age makes no difference.
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ndgrrl, I would love to know more about your experience with fat grafting for reconstruction. How long did it take—was it an overnight stay at a hospital or did you go home the same day? Where was the fat taken from, and did you have a lot of pain from the donor site? How long did it take to heal?
I had a lumpectomy 9 days ago for DCIS, and it turned out my tumor was 2.4cm, larger than I'd expected. My breast is very small, so I do have a significant dent in the lower part of my breast. I have to have radiation soon, but I'd be interested in exploring the fat grafting reconstruction if I can at some point. Does it usually require multiple treatments? Can you get some fat injections into the opposite breast for symmetry? (I know that the latter might not be covered by insurance, though, since insurance co. would call it "cosmetic."
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they are telling me radiation therapy. I don't know the extent yet. Since I am er+ I will also have tamoxifen recommended. I never did well with birth control and couldn't take it. How does that relate to tamoxifen?
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Welcome to the lounge scouser47! Thanks for dropping by with your words of encouragement. So glad to hear you are doing well and living life!!
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Kay Hi,I was put to sleep for the fat grafting and it took about an hour. The fat was taken off my tummy by lipo- about 3 or 4 ounces and then spun down and inserted into my breast, he also fixed the scar so he could insert the fat into my breast. I was pretty beat up and sore for about 2 weeks. The procedure was done at the PS operating room . My BMI had to be so low for me to be able to have the surgery there and I am proud to say I had lost enough weight to be able to have it there. I was in recovery maybe an hour and half. I ate some toast and they checked to make sure I was ok and sent me on my way with my hubby 2 hours away. I did have pain meds prescribed but didn't use them too often. My tummy swelled up for 6 or 8 weeks. I notice if I over due it in Yoga my tummy will swell and its been about 8 weeks now. The PS said that 30 percent of the fat wont take so I will have to do it again in the spring. He said it takes about 3 months to know how much will take. I want to wait until my March mammo before I have it done again. But like I said it looks so much better already. The dent is basically gone, its still red and I have small scars where the "needles " went in. I had small x's and stitches in those spots but they are getting better daily.
I went to see the PS for a check up a couple weeks later and he took one look and said it was well well worth it. I agreed..
If anyone has any questions feel free to ask.
I hope I can help someone else as another gal on this board helped me with questions before I had it done too. People on here have been great- I wish I had known about this site before I had had the BC surgery.0 -
I have also been reading these posts for sometime and do find them helpful. My tumor was also a bit larger 1.6 than they originally thougt, but mine above the nipple so more flat on top of breast. I have not seen anyone that has ILC only Ductal. In addition, one of my subtypes is that it is pleomorphic-which I have read quite a bit about. Anyone have this type? Tomorrow I find out my Oncotype score,so I am very anxious to know next course of treatment.
God bless all and continue to fight like a girl!
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MM - Come on in. The more the better. (Well, better would be none of us would need this. Let's just say the more of us fighting like girls the better.)
I think ILD has its own, dedicated set of forums and there should be something for rarer subtypes of bc. You might find someone there who shares yours.
It's hard waiting to get the Oncotype results, isn't it? I'm crossing my fingers that yours will be very, very low. Either way, we'll be here to support you through whatever comes next. Let us know.
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I looked at the forums ILC and the posts are not current-maybe I'll post something and see if anyone answers.
Yes, waiting is difficult and you keep running through each senero in your head over & over
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Welcome to BCO LisaZak and Mm68, we are glad you found this forum of caring and knowledgeable people to discuss your issues with. You'll find their comments and advice helpful in the major decisions you now have to make.
Mm68, you will find ILC people in the In the 'ILC (Invasive Lobular Carcinoma)' Forum, hope this helps.
Your positive attitude LisaZak is great as you have taken control of your situation, now you know what you condition is. We hope that all goes as planned and your recovery is easy.
The best to all
The Mods
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yes, waiting is hard. I did go back and look at the ILC forum and there are now current posts,
Thank-you!
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ndgrrl, please explain why you had to lose weight before your fat grafting procedure? Congratulations on doing it, though! 6-8 weeks of tummy swelling seems like a long time, but that's the trouble with pretty much any reconstruction, isn't it? Once you've recovered, it's no doubt worth it, but nothing is easy—even fat transfer or grafting, which seems to me like about the "easiest" way to go. But clearly not easy. So the fat was removed from your midsection and spun down right then, while you were asleep and put right into your breast? How long did this whole procedure take? And after 2 weeks you were able to pretty much resume your normal activities? This is so helpful to me to learn.
Mm68, after my stereotactic biopsy at the beginning of December, I was told my DCIS was about 1 cm, so quite small. Then, after a second diagnostic mammogram, I learned that there was a second small area of concern, and that it was something like 1.7 cm from the first area. That was when I learned I would need two wires for localization, to "bracket" the two areas. Then on Tuesday, when I finally learned the results of my pathology a week after Lx, the final size of the tumor had become 2.4 cm, or more than twice the first estimate! I'm guessing that this is because everything in between the wire "brackets" had to be removed, but I'll have to ask my BS that question at my follow-up on Monday, since he was out of town this week so didn't call me with results as I'd been told he would. However, my margins were all clean (one close margin that I hope won't have to be re-excised), and for some reason, my tumor grade had changed from 3 to 2. Good news, but another question I need to ask—why? I didn't get any more information about the pathology yet—nothing about hormone receptors, for example. Since the grade changed between biopsy and Lx, I guess I'm wondering if such other details as hormone status might change too, or not. With DCIS at 6 o'clock, looking down at my breast from above doesn't look bad (also, who knows if I'm still seeing swelling?), but the normal fuller curve below has been flattened out. Once I have my bra on (stretchy, no underwire, Coobie or Handful bra with light pads), you can't tell, but I do still miss my old shape already, tiny breasts and all. I don't know how much things will settle and change, either for better or worse, as healing continues and through rads. Meeting with BS and RO on Monday morning if a snowstorm doesn't intervene, and I hope all will be answered then. I hope you also get the answers you need, and soon! The waiting sucks.
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KayFry, it was quite a number of weeks before my breast settled on the shape it was going to be. Closer to 3 or 4 months. Radiation didn't change anything. My lumpy was in the same place as yours but smaller tumor, largish chunk removed. At 69 I'm not particularly vain about my girls. They are a bit droopy (and small). Maybe 20 years ago I might have thought about reconstruction. Right now I'm not. But it is nice to have all this information, isn't it. BTW, I knew my ER+/PR+ from my core biopsy which was nearly 2 months before my Lx. I did NOT know my HER2 until after surgery. I also hope that no re-excision is necessary. No snowstorm - please! HUGS!!!!
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Kay,The whole procedure was an hour. I had to check in early like any operation and was in there about 1.5 hours after to wake up and eat a toast. Yes they spun the fat down while I was asleep. Dr said it took longer to spin it down than it was to do the procedure. It is classified as reconstruction so insurance pays for it and I do think its like any other reconstruction where they have to match the other girl to the one that had surgery. I would ask the PS to be certain though. My surgery was at 12 oclock so its the top that is flattened and if I wore low cut tops the dent would show.
I lost weight for me. But in order to have surgery at the PS surgery suite. If I had not lost weight I would have been able to have surgery but at the hospital as I would be more high risk.
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Thanks, Peggy, you're the best. I'm very reassured by your experiences (and generous sharing of same), just still wondering if my outcome will be similar. Honestly, though, as I've had more time to wrap my head around all this, I am freaking out less and less about the cosmetic outcome—but still gathering information, because you never know. I appreciate that I'm very lucky to be getting off this easily when so many other women have far worse challenges with BC than I. Any serious consideration of possible reconstruction is becoming less and less serious for me—as I've progressed from thinking about DIEP flap to repair whatever damage this cancer has done and give me a better set of girls than I ever did have, to rejecting, once again, the idea of implants, to considering the option of fat grafting to just even out the dent and maybe fluff things up a bit, even on the other side. The bottom line is that every single reconstruction there is comes with a huge downside in terms of pain, risk of complications, lengthy recovery, more time away from the things I love and need to do—and at 64, the shape of my body and the perfection of its parts is not, in the end, important enough for me to sacrifice the more important things in life. I don't have time for much vanity, I guess, and will just be happy to have good health, which seems more and more precious. So I doubt that reconstruction will be in my future, but I do like to know my options
Even if my eventual choice will likely be the same as yours . . . 20 years ago I DID sometimes think fleetingly about augmentation to "fix" what had always felt like a deficiency in the chest department, until eventually I realized that I honestly didn't mind myself, just the way I am, and in fact was quite happy with it. Now I have to adjust to a slightly altered version, is all. It's not so altered that anyone else, honestly, would probably notice or care. I know this. And I also know it's too early to even know how things will settle. Thanks for that reminder.I did know my ER- and PR +- status after my core biopsy, but not HER2, same as you. Maybe all will be revealed on Monday. I'm cautiously optimistic from all my obsessive information-gathering that I will NOT need re-excision, and I very much hope that's true. I need to get these answers—someone here said that we wait and wait for information, and then when we get the information, it means there are still additional pieces of information that we need to wait to get. And then we wait some more. It's an exercise in patience and mind control, which I guess is not my strong suit. It will take a worse snowstorm than I think we are likely to get in these parts to keep me away from that appointment on Monday morning!
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ndgrrl, thanks for explaining further. Good for you, again, for losing that weight. What a great incentive to do it! I'm so glad the fat grafting procedure has been so successful, even though you have a bit more to go. I think if my dent were on top, it would be harder to accept it. I do have an old injury (one of many, I ride horses) on the same side as my Lx breast, a separated shoulder, which causes a very ugly, prominent bump at the edge of my collar bone that shifts around depending on how I'm moving. Because of being a bit self-consious about that, I pretty much gave up wearing anything sleeveless or low-cut quite awhile ago, but I understand what you're saying. I keep telling myself that all these "modifications" add character. Right? Then again, you're a lot younger than I am and probably haven't collected nearly as much character as I have, haha. Thanks again for the info, it really helps to know as much as you can.
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KayFry, you're welcome. Right now (and probably for some time to come), I just can't face more surgery, pain, recovery etc. I'm just getting used to being able to "do" stuff after 4 years of caring for DH. With him being in a nursing home, I'm re-learning my life. I guess I don't want to waste time on things that aren't really necessary to me, like PS. I'm too appreciative of being able to decide what to do and when. Rather selfish sounding, I know, but caring for him got to be overwhelming and I was not living. BC woke me up.
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Peggy, I can't explain how impressed I was with your last post. It was a profound statement from a giving, loving caregiver on the reality of aging.
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Oh my heavens, SweetHope. Thank you for the kind words. Believe me, I'm not that special. Just doing what has to be done because you love the one who needs the care. 49 years in April. When caregiving, you're so glad you're able to do it but you still long for the life you don't have anymore. Conveying this to someone who has never been in this situation is difficult without seeming cold and unfeeling. I've said before that I think the stress of it contributed to my BC.
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