STEAM ROOM FOR ANGER
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I agree that your friend needs to be well informed. I had bmx at 50 but I was stage 3 high risk profile. My mom had 2.5 DCIS. While she did lx and rads, she has worse anxiety than me. I mean she was 74 at dx and so many things can get you esp being older but she lives her life around not getting bc or mets. That's fine but she's a bit over the top. She has a big list of can't use or eat of which nothing has been proven to be a direct link. No red meat. Her sister is the biggest red meat eater. Moderation is ok. Moderation is the key, not chopping everything you enjoy being convinced that if you don't you're basically doomed. This may be the thing with your friend. Despite facts presented she just may feel better lopping it off even though it doesn't mean for sure no recurrence or mets possible. Is there a nurse navigator there to help? I'd ask for help in educating her. Where I am there are a lot of educational materials for people who aren't on the internet. I'd get her husband to get her to postpone sx until she is brought back down to earth from the anxiety. We all say I don't give a shit when badly depressed or anxious. But give it time and we actually do.
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Runor: WTF!! Maybe you could have your friend read some of the posts on this forum. From what you said it sounds like she doesn't have enough info to make an informed decision. Maybe talk her into a second opinion? Wow. My surgeon told me to go home and think about (lumpectomy). And I read a ton of info on different sites so I had a good idea what was what. I hope you can help her. Not that a MX is the end of the world but not really necessary.
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Whoa runor, you need to chill some. As someone who chose a BMX over lumpectomy, I take offense to your rant.I had a small tumor that was actually taken on biopsy. Was scheduled for a lumpectomy with some reluctance as I was leaning toward a BMX and had discussed that with my surgeon. Did more research and saw an MO. My epiphany moment came after seeing the MO a week before surgery. I decided on a BMX. I had no reconstruction, don’t wear foobs and some of my shirts are clingy. Eight years later and still have absolutely no regrets. And no, I’m not in denial. And I chuckle at the fact that I said the same thing that your friend did about not needing them. When I called my surgeon, I had his total support. Lets remember one thing, it is her decision just like it was for the rest of us. I hope you gave your friend support and saved your rant for us.
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runor,
I am at a bit of a loss here. I get what you are saying AND I also know you were not there with your friend at that appointment. It sounds like you do not know the particulars of her diagnosis aside from DCIS. Mastectomy helps significantly reduce the likelihood of a local recurrence. Your friend may have significant anxiety. What is your friend's family history? Does your friend have issues with receiving radiation? There are many reasons why a woman may elect mastectomy instead of lumpectomy with radiation. It is her decision to make.
You are medically savvy and educated. You have great perspective. That does not mean that someone who makes a decision that is different than you would make, or a choice that has the same “odds" as the other choice, is wrong. Or hysterical. Or incompetent. Or her doctor sucks. She also may not be the best reporter.
Yes, she should be presented with good counsel. Yes, she should understand the risks and benefits of each choice of the standard of care. Heck, she should also be counseled about the risks and benefits of declining treatment all together. It is her decision and at the end of the day you, as her friend, should support her.
Not throwing shade here. I love your perspective and reading your thoughtful and caring posts. For some reason, this one just rubbed me a bit wrong.
Editing to add: runor, you have every right to rant and I respect that you feel like ranting!!!
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I was originally told they thought my tumor was small (I was 49) and was DCIS. They were wrong. Surgeon actually recommended lumpectomy to me to start with. Dense tissues and after no clean margins after 2 tries in 2 surgeries, she then said it needed to go. She needs a 2nd opinion if nothing else.
Yes, we all know everyone panics at the start and they think removing them gets rid of all the cancer and the worries. We also know that is definitely not the end of the story or treatment or worry.............
Hopefully she will reconsider before too late. You can't put it back once it is gone.
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I absolutely and totally agree that this is a personal and private and horribly difficult decision that each woman must make on her own. That was not at all my issue. My issue is that I feel she really did not receive adequate information. Which is her surgeons job! I think her understanding of the situation is very shaky. Also, and I find this weird, she is having no more than a week to 10 days between appointments, which means everything is moving VERY fast. If she does indeed have DCIS she has time to ponder her choices. Not lots, but some. In my conversations with her I have presented as clearly as I could BOTH sides of this issue. That some women have a mastectomy and regret it and others never look back. What she needs to do is really try to imagine how she might feel a year later. Which is almost impossible to do. I am NOT in any way saying that a mastectomy is the wrong decision but it is for my friend if she made it without all the options and without understanding her true situation. I know many of us immediately jump into magic thinking that if we sacrifice the breast, we will be spared by the arbitrary cancer god. And that is just plain wrong. We believe it, but it is a fairytale.
Beesie, at this point she has not mentioned reconstruction of any sort. She is small breasted and feels that life with one boob is quite do-able. I am large breasted and life with a 4.5 pound bowling ball in an empty bra cup would be a serious impediment to functionality, and that was something I took into account when making my own decision. It would have been both boobs gone or none. I had a lumpectomy early 2017 and still have no sensation in the area of the incision. It is numb, numb, numb. Friend is really feeling suckerpunched as she has no family history at all of breast cancer. Yup, it sneaks up on us.
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I guess my big question is what is "small"? My original tumor was 3 cm. Is that small? Probably not. My BS recommended mastectomy. She said my tumor was right under the nipple and nipple-saving was not an option. I was psychologically happy that it was going to be gone. Just felt right. I've never thought of the choice as between mastectomy vs lumpectomy and radiation. Depending on the pathology of the tumor, she may end up with chemo and radiation, too, as I did. I don't think it as an "either or." I just hope she is getting good advice from her doctors. And maybe a little thing called the truth. Wouldn't that be nice?
Ten days between appointments is pretty standard in the states.
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I’ve had both, the lumpectomy was easier physically and mentally but it came back so no choice. The radiation also sucks, which may not be needed with a mastectomy. So I think I would make the same decision but the bonus of no rads is a big one.
I had an acquaintance do a double and oopherectomy for DCIS. I thought initially it was overkill for stage0. But if it is through out the breast that may be necessary?
So I understand your concern, I miss my breast and I am large so it’s a pain, but the rads precludes implants so my option would be extensive reconstruction, and I am sick of being a patient.
So as always many sides to this. I do hope she has all the information, so hard to say enough but not too much. Hugs!
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I had a lumpectomy, but I have developed some lung issues from radiation. I certainly do wonder if I made the right decision sometimes. But although I have had breast cancer, I am no more an expert than any other patient, and I would never try to force my decision on anyone else, unless, perhaps, they were refusing the most basic treatment. IF asked for my opinion, I would tell the person what I decided, and why, but I'd never assume that person should come to the same decision I did. I had one meeting with my BS, and gave her my preliminary decision at that meeting. When she called a few days later to set a surgical date, I gave her my final answer. My BS gave me enough information at that first meeting to make it a fairly easy.decision, and frankly, I'd have been pretty pissed off if anyone had tried to interfere with that.
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Yes Bennybear, more than one thing to consider. Right when you're the most ill equipped for rational thought. It's not fair.
Jaycee, good question, what is small? I am not sure of her bra size. She is not a large woman. Said her tumour is around 1.2 cms or 12 mms..
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Does having a mastectomy make it easier to find lymph nodes?
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AliceB, I have enduring lung issues too from radiation. Every now and then I get a cough that just will not go away! I think allergens that used to not bother me really irritate my lungs now. This allergic stuff is new since radiation.
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10 days is standard??? I was dxd the most aggressive. They said 3 mo ok. It's fast growing IDC but it's not going to go up a stage that fast. I wanted this bs with this ps who are the best known team here so to get them both was a 2.5 mo wait after dx.
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"Does having a mastectomy make it easier to find lymph nodes?"
No.
Lymph nodes is another consideration here. With DCIS, lymph nodes don't need to be checked. For those who have a lumpectomy, should the final pathology include some invasive cancer (which happens about 20% of the time after a core needle biopsy finding of DCIS; a lower % for low grade DCIS, a higher % for high grade DCIS), an SNB can be done as a small operation afterwards. But an SNB is very difficult to do after a MX - the SNB requires injections into the breast and obviously the breast is gone after a MX - so usually women with DCIS who have a MX also get an SNB, just in case some invasive cancer is found. For all the patients who end up with a final pathology of pure DCIS (about 80%) the SNB turns out to have been unnecessary, and yet they are now at risk of lymphedema.
There are lots of pros and cons to both decisions, lumpectomy + rads or MX (and I have a post that covers this in detail in the Surgery forum). The decision is very personal and what's right for one person won't necessarily be right for another, even with similar diagnoses. What's important is that every patient make an educated decision and it sounds like this is what's missing with runor's friend.
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Timing of appointments appears to vary as much as everything else in this process! I ended up on a fast track-- received the diagnosis on my portal on Wednesday evening, met with the PCP the next morning and stated that now that I knew "it" was there I wanted It out, met with the BS the next morning (Friday). She recommended a partial mastectomy (lumpectomy) and carefully and clearly explained options, provided reading material re path reports and anti-hormonal treatment, and discussed rads. My husband found her approach to be very helpful. The following Monday her office manager called to schedule the surgery, asked if I wanted to take the slot of someone who had cancelled for the next day! So, received diagnosis on Wednesday and had surgery the following Tuesday! The rest of the treatment has followed a less precipitous pattern.
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Ugh, runor. What a mess.
If you think it would help your friend, you can share my experience. I had a lumpectomy at the advice of my surgeon. At the time, if he'd said I needed an MX, I would have done it and then opted for reconstruction.
With no disrespect to those who choose otherwise, what I've come to know deep in my heart is how much I hate the artificial fullness and perkiness of the LX breast. I don't have runor's gift with words, just know that I hate the way this looks now. That leads me to conclude that I would really hate reconstruction, especially after reading Beesie's post about what women don't realize it will be like.
There's no backsies once the breast is gone. And if I'd done an MX and reconstruction, I'm 95% sure I'd be asking to have all that stuff removed and I'd just go flat.
But I sure didn't know that in April when I was DX'd, or May when I had surgery. I knew it by the end of rads which was the end of June.
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Upon further reflection of what is beginning to smell very suspicious to me.... I mean, what doctor would say hey, go ahead and lose the breast, you're not using it anyway? This does not even sound like a medical opinion. This sounds very much like the words her husband said to me when they first called to tell me the news. They. They were both on the phone at the same time. He told me she had decided to have a mastectomy. When I asked her what her diagnosis was she said she didn't know and referred me back to her husband. When I told her she had options, when I told her to base this upon survivability and not terror or panic, when I told her to inquire about an Oncotest, she has no idea what I was talking about. We ended that conversation with her sounding like perhaps she wanted to know more about her options and not leap automatically into a mastectomy.
She said she would call me after her appt with the surgeon, but she didn't. I called her the following day after she still hadn't called. Her husband answered. He told me what the surgeon had said. He said his wife was fine with the decision to have a mastectomy. He said she was not able to come to the phone.
I was mad earlier thinking that based on bad treatment by her surgeon she leapt into a mastectomy. I think I was wrong about that. I feel cold in the pit of my stomach. I don't think she leapt, I think she was pushed. And not by her doctor. It will take more than modern medicine to save her. She has never, ever not been available when I called. Until today. It's like watching as a person drowns and there is nothing you can do.
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If she sounded interested in options, she doesn't want a mx. 52 is young. He is very controlling. For sure he's abusive behind closed doors, mentally, physically, emotionally.. what an ass. I'd leave him. But those who stay in controlling relationships don't think they can make it on their own or are afraid of the consequences of trying to. This goes deeper than this mx v lx sx. She really needs help. She is too young to say I've been with him this long, oh well.
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Artista, you nailed it.
I have edited this post. I am going to go remove more posts because...god forbid this should ever make its way back to her. I would feel terrible. But you got it. You 100% got it right, Artista.
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runor, if he is so controlling, I trust she doesn't have an email account that is not joint or monitored by him? If she does, you can direct her to this site.
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She does NOT have any way that I can contact her without him knowing. She has no way to contact me without him knowing. I did direct her to this site. I do not know if she found it.
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runor, I just got this book Breasts the owner's manual by Dr. Kristi Funk. She is a BS and goes into detail about why your friend shouldn't do this. Its an easy read and if you have Kindle unlimited a free book.
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runor, sorry your friend was not given adequate info at her appointments. I got the same surgeon my sister had so when my whole journey started I felt confident in this BS because my sister absolutely loved her and said she was a fine surgeon/Dr/and person. My first learning about BC came from both of these people, BS and my dear sister. Neither pushed me in either direction. I felt informed enough for a newbie, but I totally agree I was definitely not rational at the time and looking back am grateful I had sensible people informing me of my choices.
Totally get your concern. Best wishes to your friend.
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There's a few new topics popping up here now on this very subject. Patients being misinformed or they're just not being rational--or both at the same time which could be disastrous. One in the surgery section and one in not diagnosed.
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I have no doubt that she's being controlled by her husband which means probably supervised internet if at all. Do you know the surgeons name? Do you guys have hipaa laws like us or can you bring it to her doc's attention?Unless he works from home and never leaves for a good amount of time, I'd see if I could reach her in person. Better yet, try and get her out of there. I'm really afraid for her life.
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runor, I am so sorry about your friend!! If your suspicions about her husband are true, her living situation is as concerning as her bc. Hoping for the best for her!
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On the other hand, I have a friend who was diagnosed with BC in 2018 who knew none of the details about her diagnosis or treatment because " I don't want to know any of the details". She indicated she had asked her DH to deal with the "details". She did have surgery etc and at last report was doing well. Certainly not my attitude but one she was comfortable with.
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My sister has mets to her spine after originally getting diagnosed as Stage 3. She told her MO well OK. Here we are, I really don't want to know where they are. None of us know, that was her choice that was right for her to keep living life and not worrying about every little twinge. Me? Total opposite. You can't feed me enough information.
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I found out randomly that an acquaintance has the BRCA1 mutation. She knows it and decided to go for watchful waiting rather than any prophylactic surgery. Which is absolutely her right.
I told her "you don't want to end up like me -- that's what you're trying to prevent". She thought I was going to try to talk her into the surgery. All I wanted to know is whether she understood the risk she was taking.
Apparently. . .not exactly. But after we talked, she did. And now she can make informed choices. That's all I wanted for her. Runor, seems like that's all you ask too.
But we can't control other people's lives.
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I had a dear friend out of state that stopped responding to my emails and phone calls. I was already suspicious of you-know-who so I called the police in her city/state and asked if they'd do a welfare check. I got a call 3 hours later with the worst news. I was devastated. I can't say another thing until justice gets done but I sure hope that it's soon. Which I know it won't be. Just remember... you can always get a welfare check....
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