Lumpectomy Lounge....let's talk!
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Maybe I should consider a kitty condo.
Sue, make sure you contact GypsyJo, to meet when you are in Portland. She's a great friend and came to our Michigan get togethers. If you haven't connected with her, let me know and I'll put you two together.
Spokane is definitely out of the way. And next summer or whenever is just fine for you ladies to visit.
Moondust, do stay cool! We've cooled off from the 90s to the 80s.
HUGS!
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Peggy, so glad to hear about your furniture's early arrival!
Sloan, great news on your six month testing!
So, did anyone else see the piece on Sandra Lee from People Magazine?
Here's the link:
I was surprised to see the video and learn that she had DCIS, not IDC. There was a feature on her in Parade magazine back in October in which she said that she chose to have a bilateral mastectomy because she didn't want to have radiation and still worry about cancer coming back. At the time I mentioned it to my MO, and she said that some insurance companies have stopped covering BMX procedures that aren't necessary.
Sorry to rant, but I hate the message this sends. Unlike Angela Jolie, she tested negative for BRCA. I don't like that people who have not had cancer are given the impression that it is as horrible as she makes it sound. It's the antithesis of the "not easy, but doable" theme that most us here have had with our treatments. Everyone is entitled to her own reaction to her own diagnosis, but it's not necessary to document it on video and put it out for everyone to see how shattered you are. Especially when you got one of the best possible breast cancer diagnoses.
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Peachy, I had the same reaction you did to that article. She has chosen an unnecessary path IMHO. I don't understand the thinking. When I was diagnosed, I assumed I would have a mastectomy. My BS got me straightened out in a hurry. Why would you have more surgery than is necessary? And I believe hers did not indicated a BMX. End rant.
Furniture is not early - it will be 8-10 days late. But at least it is moving! I want my stuff! My patio furniture would be really nice in this lovely Spokane summer.
HUGS!
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Peggy, thank you for sharing my rant. Good to know it's not just me. Oh, I am so sorry about your furniture! In trying to catch up on all the back posts I misunderstood. Glad that your closings are going as planned, and that you are getting settled and making new BCO friends in Spokane. I have to imagine that you make friends wherever you go!
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Sloan, Hooray for remission!! Yes, I later in the year sounds wonderful. I truly want to see you all.
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Sloan, congratulations on your good news!
Peggy, so glad you are finally getting your furniture!
I agree with you all about the article. I was initially diagnosed with DCIS & remember thinking how fortunate I was that it was caught in early stages. I assumed that I would have a lumpectomy. Was surprised when bs gave me a choice between lx or mx. I elected for less invasive option. What really scared me was after the lx, the pathology showed there was a very small spot of IDC. All ll I heard was invasive. But again, very fortunate. It was non aggressive & slow growing & SNB was negative. Still it didn't persuade me to want to get an mx. I did request checking the nodes for level of comfort. Sounds like she just wants the attention.
Only have 6 rads left of 21. I'm almost there. Tech yesterday said she thought I'd make it through rest of treatments without the skin breaking down. Its fiery red & has started itching at the edges, but not noticing much pain But I am tired. Had a rough week at work that brought on the increased fatigue. So glad it's Friday!
Hope everyone has a relaxing weekend Hugs
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Peachy, definitely not just you on that article.
Tbalding, glad you are managing your rads pretty well. won't it be nice when you are done?
I do make friends where I am. I'm getting used to living in the "country" - there are farms besides other new subdivisions where I am. I do miss the sounds of bustle from city living but not enough to give up my beautiful home. BCO sisters are the best friends!
HUGS!!
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Yes, Peggy, it will be nice. It's like having a second job. But whatever it takes
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tbalding, six to go so you are in the home stretch! Yay! It is like having a part-time job, isn't it?
When I was first diagnosed Stage 1 I told everyone that I had just received "the best worst news possible." It's all in perspective. The mother of one of my son's friends had just started chemo for a recurrence of ovarian cancer, and I figured that she'd trade her stage 3 abdominal invasion for a tiny bump in her breast in a heartbeat. I saw her last weekend and she's doing great, though her husband was just diagnosed with lymphoma and started chemo on Monday. So, I didn't complain that my hair is growing back a bit frizzy in front.
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TBalding, you hit the nail on the head - whatever it takes, we'll do it!
Peachy, how discouraging for your friend and her DH. I'm glad she's doing good but very sad her husband is now going through it all. No, I can't complain either.
HUGS!
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To put that article in perspective, not all BMX decisions by unilateral DCIS patients are overkill. My friend in a small town south of Joliet got her initial DCIS dx in late Dec., after Bob (who's her PCP) nagged her into getting her first mammo since she had an excisional biopsy for a fibrocyst back in 1991. The mammo, done at her small-town hospital, showed a 6cm cluster of calcifications behind the nipple in her L breast, which (the breast) was pretty small. Core-needle biopsy done at Bob's hospital confirmed DCIS--but grade 3, with comedo necrosis, and ER/PR-negative. (Not tested for HER2, but a small majority of high-grade DCIS is HER2+, though that is less significant a factor than in invasive cancers). She was offered lumpectomy plus radiation--but the reason Bob's her primary is that he's also her cardiologist: she's had two stents thus far. She was understandably concerned about the effects on her heart, as was Bob. Not only that, but because her breasts are dense and the radiologist saw some additional anomalies in both breasts, she was referred for an MRI-guided stereotactic core-needle biopsy. Unfortunately, she had trouble breathing when placed on the table prone, and the table was too small to accommodate her abdomen. She was referred to yet another hospital in a different system, which refused to further image her L breast, reasoning that she was opting to remove it anyway, and decided it could biopsy her R one via ultrasound, supine. That diagnosis was ADH. By then several months had elapsed, and she told her surgeon, “I want it out yesterday." She was adamant about going flat, since she is 70, widowed 15 years, not dating, and hadn't worn a bra in decades. Nonetheless, when the surgeon came into the pre-op room to describe “the drill," she said to me, “You might want to go back to your hotel and get some sleep or do some shopping, because she'll be in the OR for 7 hours." When my friend reminded her “wait a minute, I said I didn't want reconstruction," the surgeon said, “Oh, that's right--it's just that all my other mastectomy patients want reconstruction. My bad. Two, three hours, tops," and to me she said “you can go have lunch in the cafeteria, or buy a sandwich in the waiting room."
She recently got her path report back--widely scattered DCIS, all grade 3, in the L breast and extensive ADH verging on DCIS in the R. For her, BMX was the right decision. “One and done." Nothing else to do but recover.
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Oh, and Sloan--congrats on the NED! Which champagne should I pop when you visit?
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Sandy, your friend's situation seems to be very different from Sandra Lee's. I certainly would have supported your friend's decision to have a BMX. Especially with heart issues it makes sense in her case. I just didn't see any extenuating circumstances from that article.
Have a sip or two of champagne for me!
HUGS!
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Just watched the video and I was fuming. I wanted to scream when she mentioned how “scary" the DCIS diagnosis was--the statement “who knows where it is, how far it’s gone, whether it will kill me.” Really? It was DCIS, in ONE breast, with no indication from either the video or article what grade, how extensive or receptor status. (Did she not do her homework when she got her diagnosis? I’d have killed for DCIS rather than IDC). Now, as I said, a BMX decision for unilateral DCIS isn’t always overkill. And from what I’ve read elsewhere, she had a lx with dirty margins, and small breasts. So a UMX was necessary for practicality and the contralateral one for symmetry (her statement that her doctors recommended the latter because she was “a ticking time bomb” is rather dubious, especially in light of the fact that she had nothing going in in that breast, no family history, and no genetic mutations).
But I can’t help but wonder if there is a growing mentality among women (especially women who have taken charge of their careers or been taught that feminism means choosing whether or not to “have it all”) that every possible variable in life must be controlled to the fullest extent possible. I keep reading about women with low Oncotype scores, low-grade early stage IDC, and low ki67 demanding chemo and BMX because they “want to make sure they did everything possible” to keep the cancer from coming back. Hate to say it, but there is a huge difference between “everything possible” and “everything necessary.” And there are plenty of women over in the Stage IV threads who threw everything in the book at their cancers and still got mets. Life is a crapshoot, and cancer is the croupier. Sometimes the croupier loads the dice and we never find out until it’s too late....but we couldn’t have known, nor changed the outcome had we known.
When she wailed about how terrified she was of the supine MRI (“I’d have to lie on my back, in that little tube where I can't move”), I wanted to reach through the computer screen and shake her shoulders and yell, “Cowgirl up!” I’m nearly twice her size (except in height), and if anyone has a right to complain about claustrophobic MRIs it’d be yours truly. Over the past 25 years, I’ve had them many times for orthopedic injuries and surgeries (even had a brain MRI a few years ago for a mysterious hearing disturbance--they were looking to rule out aneurysm, acoustic neuroma or worse). I’ve lost count of how many. I too was worried about genetic testing--but because of my ethnicity, my MO insisted on it. But Lee didn’t say whether she had any justification other than fear (of not being in control of everything. And we both tested negative).
But the thing that infuriated me most was the article’s introduction--which said she “battled” breast cancer--as if cancer were the opponent in a defined contest of wits and strength that can or even should be “beaten," with "victory" a personal achievement rather than a good outcome from treatment that happened to work. Now, I sometimes guilt-trip myself about going to support groups--after all, I kept both my breasts and hair. But I had radiation, a seroma that burst, and am on letrozole for at least five years, with all its side effects. Still, I can’t describe what I’ve been through or am going through as a “battle” (or even an “ordeal” to be “endured”). Lee's statement that she was fearful of being unconscious would be ludicrous to anyone who’s ever had major surgery, if it weren’t such an obvious clue that she is in essence an utter control freak. I don’t doubt that a BMX is traumatic in every sense of the word, nor that things can go awfully wrong with any plastic surgery--and reconstruction is not uniformly foolproof. But surely her doctors impressed upon her that the odds of complications from her reconstruction equaled or exceeded the odds of recurrence had she opted for lx+rads.
Y’know what? I previously had scoffed at wealthy celebrity breast cancer patients like Lee’s GMA colleague Amy Robach (whose diagnosis was a result of being ordered by her producers to get a mammogram as part of a “Pinktober” awareness story), or Joan Lunden, who had both money and assistants to get her through her cancer. But Robach had Stage II IDC with both chemo and consequent memory impairment, not DCIS. And Lunden’s cancer was triple-negative. Then there’s Robin Roberts, who went through not just locally advanced bc (and months of chemo), but also a stem cell transplant for the MDS just four years later that was a rare and serious side effect of her treatment; and Nora Ephron, who embarked on her initial breast cancer journey--and subsequent MDS--in private, with dignity & class. Sheryl Crow had IDC and lx + rads, and now has a benign brain tumor that may have been caused by hormonal imbalances resulting from the cancer. Kathy Bates had not just ovarian and breast cancer (BMX because there was atypia in the “healthy” breast) but also lymphedema, and is the nation’s most visible LE activist. (We won’t talk about Melissa Etheridge, who actually blamed her “poor diet” for “switching on” her BRCA-1 gene mutation, says that she cured herself by “getting” her “body back in balance," and scoffs at “science." Some people should just stick to their God-given talents and avoid using their fame to spread bullsh*+).
I have often railed against the perception by some (not here on bco nor in my support group) that I have no right to call myself a “breast cancer survivor” because I am lucky that my surgery and treatments did not make a major dent in my life (yes, I am indeed lucky). I hesitate to call names or use such an odious term, but..........Lee is a crybaby. She needs to read the threads here, with the stories of all our sisters who’ve faced not only grueling surgeries, treatments and harrowing diagnoses and uncertainties, but did so out of the public eye, unrewarded by fans and media, and more often than not while dealing with other major and heartbreaking life, financial and family challenges. (And those who suffered complications of necessary, not elective, treatments).
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Good morning, all. Just popped in to see how everybody is doing and wish you all a nice long weekend. Just read your last post, ChiSandy, and I wanted to stand on my kitchen chair, thrust my fist into the air, and yell "YESSSSSSS!!!!". Bang on.
Glad to read that you're beginning to settle into Spokane, Peggy, even if you don't have furniture or clothes yet!
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Sandy, I love you for this and all of your wisdom: When she wailed about how terrified she was of the supine MRI ("I'd have to lie on my back, in that little tube where I can't move"), I wanted to reach through the computer screen and shake her shoulders and yell, "Cowgirl up!
Beyond all of the emotions that we go through, one of the hard parts of dealing with cancer is that some of the people we know just have a hard time dealing with cancer patients. Because they have seen too many examples of people who have had catastrophic experiences, learning that someone they know has the big C makes things awkward. They start to tiptoe around us, talk about the weather, and avoid eye contact because it makes them uncomfortable. It's messages like Sandra Lee's that give bits and pieces of misinformation that cause this.
Don't even get me started on "I only lost 25% of my hair" Amy Robach. If you cold-capped during chemo, say so, because otherwise other women are going to think that having chemo without becoming completely bald is doable. Especially if you are a journalist.
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Sandy, well said!!
Heading to excercise class, energy not quite there, but determined to go. Probably have to take a nap when I get back, lol!
Happy relaxing long weekend everyone, I really appreciate each and everyone of you & what is shared!
Hugs, Trish
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Sandy, AMEN!! Well put and putting her in place. You are so right, she should read some of the posts here to find out what "battling" really means. Slogging through tough treatments but keeping a positive outlook because not to is unthinkable. And being upset over an MRI - take a Valium for heaven's sake. Like you, I feel lucky that I needed only an Lx, Rads and Arimidex. But if something else were needed, I'd have done it. Again, Sandy, you have eloquently expressed the outrage we felt with that piece. Thank you!
Grazy, Hi! I am settling into Spokane. Such a different vibe than being in Metro Detroit. Definitely has a small town feel even with 210,000 people. Everyone I've met has been wonderful, especially my BCO sisters.
Trish, Your energy will come back. Your body is still very busy healing and will be for quite awhile so take that into account.
Happy Fourth!
HUGS!
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Thought I'd also weigh in on this. First of all, Sandra Lee always bugged me! I'd watch her show and everything about her grated on my nerves, especially the end of her show where she made her cocktails (I love a good margarita as much as the next person, but she was just annoying!) I can somewhat understand her fear of MRIs. I've also had several for joint replacements and surgeries (3 hip replacements, knee replacement, shoulder reconstruction and total foot reconstruction) and my first mri was in a tiny tube. I'm moderately claustrophobic, and started hyperventilating when I opened my eyes and saw the top of the tube about an inch from my nose. I had 2 others after that with a larger bay that were ok. I was told the breast mdi is in a tiny tube again. I fretted for a week before, but just sucked it up. laying face down was actually much better, and I found it was absolutely nothing.
People who are "spokespeople" should have to go through some sort of counseling class before they are interviewed. They just don't realize how what they say can influence others, and when it comes to something as important as one's life, words matter. Every cancer is different, and that being said, I don't think any dx should be minimized. I worked with a woman who was dx with DCIS at age 50, had bmx and then nothing. 1 year later, she found she had lc and then it spread to her bones. I used to think she was crazy to just do surgery, but now know that is the recommended treatment. any cancer should be taken seriously, but faced with knowledge and the most up to date information. Fear is one of our greatest opponents with cancer. It causes people to avoid testing and dx. How many women will now avoid an mri because of her comments? Just the word cancer makes most cringe. We all need courage to go through the treatments to stay alive. Compare the threads on this site to Lee's article. I'm so glad I found all of you before I saw her video!
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Dara, I like the way you think! "Fear is one of our greatest opponents with cancer. It causes people to avoid testing and dx. How many women will now avoid an mri because of her comments? Just the word cancer makes most cringe. We all need courage to go through the treatments to stay alive."
My ten year old son has had two MRIs in the past six months. Though he had a hard time with the first one he handled them better than Ms. Lee.
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ChiSandy - here's an AMEN. Couldn't have said it better....
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Herehere Sandy!! Dara, I actually have seen several women with recurrence after BMX for DCIS and I always wonder why they aren't on Tamoxifen or AI's. I tried to go the simplest route and was even willing to live with one foob and one natural breast until I got my genetic testing results. Believe me going through mx surgery is not fun plus having rads after. I am very lucky to not have to do chemo. I think what the press also fails to mention when talking about some celeb beating BC is how with ER positive BC your odds of recurrence increase after 5 years. Many people, myself included, erroneously believe after five years you are cured. As my BS said, once you have BC there's always the risk of it coming back. I have a friend who was diagnosed shortly after me. She is triple positive ILC. She's gone through months of chemo and Herceptin and now rads after having a umx. If anyone has the right to call it a battle, she does.
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I have to say an Amen Sandy as well..but I will take the 'battle' issue even further: personally, I hate the term even for those who really are fighting for their lives: I often see obits that say 'she lost her battle with...'. I HATE that. To me, it implies it is a fair fight, which of course it is NOT, and it also implies that the one who loses the battle is the 'loser'.
You heard it hear first: if I ever have a reoccurrence and if I die of bc, I hope NO ONE EVER says that I lost a battle. I will come back from the grave to haunt my family if they do that.:-) Thinking of putting those instructions in my will.
thanks to all of you for getting it.
Hugs!
Octogirl
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octogirl, I am the same way. I don't want my name mentioned in association with a battle or fight against BC. If that's the case then death won the battle not cancer.
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I had to chime in. The Sandra Lee video made me ill. I mean really? Like we all want to endure awful treatments etc? I agree you need counseling before you do the "expert at this" routine.
And Amy Robach lost on 25% of her hair, she should say she cold capped, because i agree most women will think there is a big chance they won't lose their hair. I was in chemo with a lady, youngish who quoted Amy Robach's percentage, and the other women told her she probably used cold capping. Well, the young lady lost all her hair 14 days after starting chemo like most of us. She was devastated as were a few others, so I got to see first hand the effects of those comments.
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Did you see this posted in another forum? https://scicasts.com/healthcare-technology/1849-medical-imaging/11408-researchers-develop-new-technology-to-id-aggressive-early-breast-cancer/
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Molly, if the study actually does show which forms of in situ cancers are slow-growing and which are not that would be huge. A step in the right direction.
HUGS!
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Does anyone else mind if I vent for just a minute about something else? When I had my surgery two weeks ago and people learned I had a lumpectomy with snr, many went on and on congratulating me and telling me what great news that was! I know it may be partially my own fault as I've really tried to be super optimistic and upbeat for my family. As I've mentioned, I just lost my sister to bc last Oct to stage IV so wanted them all to not equate my cancer with hers. It really stunned everyone when I got my dx. But, OK, when friends say "great news" I think, OK, saying "Oops they made a mistake, you don't really have cancer" would be great news! It seems people think having lumpectomy and snr is really minor forget all that still goes along with it. I guess it's one thing if I say it, but I'm not sure how to respond when someone else says that. I'm only 2 weeks out from surgery, and I think I've developed a small seroma by the nodes. I have about a 1/2 of a racquetball under my arm that get quite tender at times. I was at a photography class Thursday and it got really painful and I couldn't put my arm down towards the end. When I mentioned it to a good friend who went with me, she said "Really??? Still? I thought you'd be fine by now."
I went through all the chemo and rads and mets with my sister so I know how blessed I am to have caught this so much earlier than her. I still don't know my onco results so am unsure of my next steps yet. I also know people aren't sure what to say, and I'm probably just being overly sensitive. OK, end of my vent.... now back to positive, upbeat, smiling Dara? Thanks for listening :-)
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right on Dara! Rant away
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Molly, thank you for the article. Since part of the rationale for the new recommendation to delay first mammograms and have them only every two years is based on the hypothesis that too many cancers found would not ever become IDC or or fatal, it is good news that better distinctions are now being made.
Dara, vent whenever you want here! Your reaction is absolutely reasonable-- lumpectomy might not be the worst version of cancer treatment, though you still had a cancer diagnosis. It's like how the first question other women often ask is "Did you have a family history?" It's as if they want you to say "yes" so they can be relieved that they don't.
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