Lumpectomy Lounge....let's talk!
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Dara --- do you have a tablet too? If I access on my Ipad, I have to log in, when I go back to my Air, I have been logged out and have to log in again.
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Elizabeth, I find I have to log back in when I switch from laptop to tablet, too. Doesn't seem to matter for my phone. I have complained about it but the Moderators said it's done that way by design. I don't think that's what Dara is talking about if I understand her correctly.
HUGS!
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You' re probably right Peggy
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I only check the site on my iPad and I just log on through my email since it's so much easier for me
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Hi
I'm really sorry, but I don't see the start your own topic on this forum as instructed and since I am scheduled for a lumpectomy, I hope this is the correct forum. I signed, without reading thoroughly, the surgery consent papers, dropping them off at surgeon's office in a rush on way home from getting pre op tests. My fault, I know. The consent forms say that in the event of unforeseen or additional treatment, I give the surgeon permission to do whatever he feels will provide best outcome, including mastectomy. I am not ready or prepared for a mastectomy as a possible outcome right now.
My question is do I call the office and recant that portion of the consent form, inform dr just before surgery, or do nothing. Am I even allowed to refuse this type of consent?
Thanks, Roche
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Your consent isn't binding until you're under anesthesia. You can revoke, rip it up or modify it at any time. Heck, I cancelled my own trigger-thumb surgery while in pre-op, just as they were about to start an I.V.
Call your surgeon and tell him that you give him permission to do only a lumpectomy, sentinel node biopsy and anything strictly necessary to immediately save your life in the event of a surgical emergency—such as if your heart or breathing stops. Period. End of sentence. Any further surgery, such as mastectomy and going back for cleaner margins, must be discussed with you after your lumpectomy and surgical path report—with you fully conscious and competent to give your consent. If the surgeon refuses to accept your terms, fire him.
I'm not kidding. He works for you. You are HIS boss. Tell him to get with the times. The kind of surgical consent he had you sign dates back to the days when a patient was put under to do a surgical (excisional) biopsy, frozen sections were taken and sent to the path lab and if they came back malignant, mastectomy was performed. The only way the patient knew if she had breast cancer was if she woke up with or without her breast.
Is he a general surgeon or a breast cancer surgeon? If the former, get a second opinion from the latter. Many older general surgeons learned how to do modified radical mastectomies, and when you're a hammer, everything looks like a nail. Unless you have IBC, you have time. Your tumor didn't appear overnight.
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Roche
I am pretty sure mine said that too but everything is so rushed when you get dx. I was okay if it had to be done, which it didn't. I just wanted to do whatever it took to get rid of it and mine was aggressive. You can call for sure and revoke that part or go in and change it. Mine was a general surgeon who specializes in breast cancer but he is an amazing surgeon.
Dara,
My IPad sometimes logs me out for no reason but I ticked the box to save my login so it's just a matter of hitting login again. I don't use my phone at all because I couldn't login with the same password. Is your Mac being restarted at all? Maybe it's cleaning the cache each time. Not really sure if that could be it. I finding my iPad frustrating sometimes on this site....it has a mind of its own with autocorrecting what I type!
Karen
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Roche (and Sandy), is there a problem if your surgeon is allowed to try for clear margins during your lumpectomy? My surgeon went back 3 times during my lumpectomy surgery in order to get clear margins. The surgery took quite a bit longer, but I really appreciated not having to go back in for additional surgery. But I COMPLETELY understand telling the surgeon no mastectomy without your prior knowledge and discussion. They have you signing and taking in so much info, you really need to take time to understand everything and have time to process the process! Hang in Roche and ask as many questions here (and with the dr) as needed. This site covers a wide range of topics and support. We are at all different stages and everyone bends over backwards to help us all get through this.
My computer problem isn't the result of logging out; it's that my password is never recognized when I try to log back in and I have to hit the reset password every time I try to enter the site. My cache clears once a day, but I can't login in even 5 minutes after I have just been on the site. I can even use the same password each time, hit remember me, and it's no go. I tend to think it has something to do with using Safari, but it's worked since June so I'm not sure what changed. I haven't done any major updates recently. I'll keep experimenting. Just didn't know if I was the only one.
Well just 4 more whole breast rads and then 8 boosts. Skin is now blistered and yuck under the breast so have the Silvadene prescription. All in all though really not as bad as expected. Will be so glad to start 2017!
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Roche, Welcome! You are definitely in the right place for the answers you need. And I agree with (lawyer) ChiSandy - get rid of that blanket permission. YOU decide what will be done and when. As you now know, we are informative, comforting and warm. We're here to help. Please help us to help you by filling out your profile and making it PUBLIC using Settings. We'd like to know where you live, too. That can make a difference as well as perhaps finding BCO'ers who live near you.
Just don't let any doctor bully you into doing things you are not comfortable with. Get second and third opinions until you understand your options and which treatment path makes sense for you. You CAN reject any or all treatments.
HUGS!
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UCLA has said that the new standard for “clear margins” is, and I quote from one of their surgeons’ video, “no tumor on ink.” Many surgeons still set an arbitrary number of mm between tumor and ink, and if they don’t get that, they go back in. That is increasingly apparent to be unnecessary. If there is a reliable path lab that can determine during surgery if there’s still “tumor on ink,” wider excision during surgery might be okay—but it also lengthens the time that you are under anesthesia, which is no small consideration. And path labs can disagree about margins—a frozen section examined on-site under the press of time is often not as accurate as one evaluated painstakingly by the lab, as part of the full surgical pathology leading to final diagnosis after the patient has begun the recovery process.
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Hi ladies,
Yes, this forum is warm and comforting. I am so glad I found it. Tremendous help at this early stage. I just found forum. I will fill in my info shortly. Thank you PontiacPeg.. CHi- Sandy- the surgeon is a member of the breast surgeons assoc or org, is early 50's, and breasts are his specialty. I spoke to his receptionist today and questioned that clause about physician making decisions during surgery. I said that clause is unacceptable. She said he wouldn't do that and wouldn't be able to do that until pathology report came back. DaraB, as far as the margins, my excision pathology report
said cancer was 1 mm from margin, but surgeon said he was going to widen it. CHi- Sandy- I read the same info as you. As long as it doesn't touch the ink, that is the present recommendation. I'm not bold enough to convey this to him. I also was told another surgery might be needed. Not appealing to me.
I have had a stressful week trying to make arrangements to have this surgery, but it hasn't been going smoothly. I'm wondering if it's a sign that I should hold off. If I cancel, I'm afraid I will not make another appointment with anyone.
Roche
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Hello again Pontiac Peg,
Just wanted to say that as this point, I don't have enough information to even know what to fill out yet. Just IDC, est- progesterone positive. Guess after lumpectomy and pathology, I hope I will know more and understand it🤔
Roche
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Roche, is a second opinion an option for you? It's important not to rush but take the time to make sure all your questions are answered. Good luck, it's so difficult in the beginning stages. We've all been there. It is a little less stressful once you actually know your entire plan. Unfortunately, it's always a waiting game. Take some deep breaths.
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Hi Dara B.
This all happened so fast. I go back and forth with second opinions. I took my dog for 3 surgical opinions before surgery. I believe this surgeon to be capable. I don't feel totally at ease, but that's just me in general. I would prefer to go to NY or even a large cancer hospital here in Jersey, but I just don't want the hassle of commuting, especially now in winter. So your surgeon went back 3 times during first surgery for the margin? How wide did he make the margin? That's interesting and sounds more appealing than returning for more surgery if necessary.
As far as the plan, I don't find any of the choices appealing. I'm thinking of looking into alternative therapies.
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Hi roche, you couldn't be more right in thinking that the "lumpectomy lounge" is the right
place to be. I read your most recent posts....and a second opinion is very wise. It's your
body and your life. As far as margins go, the wider the margin is from the tumor cells
"under the 'scope', the better. And like Pontiac Peggy stated, ....BC is BC is not true. DCIS
differs from IDC and by the same token, LCIS differs from ILC. The approach by the surgeon
can vary because every surgeon is different and it sounds like you have a great surgeon team.
To Dara, Sandy, Peggy, Molly, I just got back my oncotype and it was "5". I was so elated.
I will see what my oncologist decides to do in light of this results.
Kudos to you, roche....I and all the other angels on this website are here for you.
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Roche, You might find Dr Susan Love's The Breast Book helpful in sorting everything out. As for your profile, you can always change and edit things. So put in the diagnosis you've gotten, when you've gotten, the plan for surgery. We have quite a few gals in the East so do put in location. If you are interested they may be able to give you recommendations. Just a thought. If you are investigating alternative treatments, please read and evaluate them carefully. I'm sure you know there are quack theories out there and that's not what you want.
HUGS!
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TTTT, Congratulations on an unequivocal Oncotype score!!!! That's fantastic!! Very happy for you. Now onto rads!
HUGS!
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TTT
Thank you for the encouragement. And great new for you!I'm slowly learning about these tests, terms,
and treatments, and I'm happy you got a low score on the oncotype
Roche
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I do not know how I got so lucky!. I am always usually the "poor boob" who draws the
short straw. Not for nothin, these expanders feel real weird and strange. My swelling
has gone down considerably, and I feel that they are moving on their own without me
remotely using my pectorals. It's not painful but weird.
I am very blessed in so may ways....this is the best Christmas present I ever got.
HUGS BACK TO YA'LL.
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Don't ever to hesitate to post or voice a concern. We have all been through the
phase that you are experiencing, although our situations may not have been
identical, meaning our diagnoses. We are all in this TOGETHER !!
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Hi Pontiac Peggy,
I see there is a forum here on alternative therapy and information provided that seems to be authentic. Interesting reading. Right now all I know is that the surgeon removed the tumor a little over a week ago. I'm still in shock. Now I'm scheduled for lumpectomy to clear margins. I don't know what comes next. I guess an oncologist. And then I'll try to fill in my info.
I would love to find some Jersey Girls to get recommendations from.
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Mazel tov, TTTT! Bet the Grade 1 and the degree of hormone-receptor positivity explain such a low ODX score despite the size of the tumor (ILC appears more “leaflike” and thus tends to have larger dimensions than IDC). I’d be shocked if you were offered anything other than endocrine therapy. Certainly no chemo. And having had a BMX with recon, no rads either. Just a pill and periodic surveillance.
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Hi Pontiac Peggy,
I see there is a forum here on alternative therapy and information provided that seems to be authentic. Interesting reading. Right now all I know is that the surgeon removed the tumor a little over a week ago. I'm still in shock. Now I'm scheduled for lumpectomy to clear margins. I don't know what comes next. I guess an oncologist. And then I'll try to fill in my info.
I would love to find some Jersey Girls to get recommendations from.0 -
welcome Roche, my surgeon didn't get clear margins and a month later he went in for the rest same incision, but very quick recovery second time round. I don't really know about my report either but I'm meeting the radiologist and the oncologist for the first time this week to see what my treatment will be this is all very daunting
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Morning Lori70
So you scheduled appts with rad/oncologist in advance before pathology results? Did surgeon give you any idea of possible treatments? What will you discuss with them? Will they have your report? My surgeon has not discussed much other than doing surgery.
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I believe the surgeon got the results after the lumpectomies, I just don't really know tbh, as I was only concerned about not having chemo and what my breast would look like, all I know is I had Paget's and 3-4cm of Dcis, I have only seen the breast Dr and I am finished with surgery however the breast DR will see me in 6 months and maybe I'll need reconstruction if breast changes due to radiation.
My breast DR said I will be having radiation and possibly tablets for few years because its oestrogen feeding I know that's not the right terminology, no chemo because it's dcis only which is non invasive
The next stage is seeing the radiologist tomorrow and oncologist on Friday all arranged by the breast clinic.
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Tootsie, that is just awesome news!!! What a total relief, especially at this time of year. I'll sure keep fingers, toes and everything else crossed that chemo won't be needed!
Roche, my margins were clear at 2mm from closest margin. I had my surgery in June at the City of Hope, LA, and my surgeon was the head of breast cancer surgery, so I felt secure in her process. I know things change constantly with bc treatment, but I was so relieved not to have to go back in for additional surgery. Then I had the onco and then the Prosigna (a genomic test targeting recurrence rates for intermediate onco.) When I came back high risk, my original plan changed. The most important thing is for you to feel completely comfortable with what is going on. I, too, recommend Love's book, plus I found several good ones on non-medical recommendations for living with cancer, especially with regard to personal health products, food, and environmental products. I didn't go that route exclusively, but combined both approaches. Happy researching!
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Hi Dara: i just love your new avatar - so cute lov it
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Thanks Miko. I abandoned the scarves. I was tired of people stopping me to ask if I was "going through something" and wanted to feel more normal. I've switched to one of my wigs. Wanted to tell people, "yes, I'm going through hell," but I know they were just being kind and supportive. After 6 months of treatment, I just want to be me, not the cancer patient. I think my DH and I are going to try to make a trip to HI after treatment, maybe in Feb. Our favorite island though is the big island so don't think we'd make it to Honolulu. Darn!
Am working on a sewing project today for one of my grandsons, so having a nice day after rads.
Just curious... has anyone heard from Michelle? She was on here daily, but maybe now is just trying to get back to normal life. It's so nice when people pop back in to say how they're doing.
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tatatootsie!!! A very Merry Christmas present to you!! How wonderful to be able to skip chemo!! Welcome Roche. This is indeed a wonderful thread and BCO is a great place for information and making friends.
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