Lumpectomy Lounge....let's talk!
Comments
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Gosh, that sounds brutal.....so sorry you are going through all those complications. I agree with the signing of the papers but never expecting any adverse reactions. I really hope you start to heal very soon and can put this behind you. Sending lots of healing hugs your way. Please rest as much as you can.
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No chocolate after an oophorectomy? Makes no sense. Please explain the science behind it (I’m a born-again empiricist). But removing one’s ovaries isn’t an alternative to an AI (at least not after menopause), but rather an adjunct, especially if one carries a genetic mutation that also increases the chance of ovarian cancer. The reason you would still eventually need an AI is that while ovaries are the body’s primary source of estrogen, they aren’t the only one. Adrenal glands and fat cells also make estrogen through a more complex process: they make androstenedione (the same hormone that Sammy Sosa and Mark McGwire took during their home run wars), which the enzyme aromatase converts to estrogen. AI’s prevent aromatase from doing this (and are sometimes taken off-label by male body-builders looking to suppress estrogen, thereby increasing musculature and decreasing fat in places such as breasts, hips, thighs & buttocks). If you shut down or remove your ovaries, you can still make all the estrogen your tumor cells need. Tamoxifen blocks the cells’ hormone receptors but doesn’t necessarily lower estrogen enough to affect bones. AIs (anastrozole, letrozole, exemestane) actually reduce or shut down estrogen production, which is why their side effects are like a second--and often more severe--menopause (sans ending periods, as they’re only given to women who’ve been through menopause): thinning bones, sore joints, hot flashes, thinning hair, slow metabolism & weight gain, dry skin, etc. Unlike chemo, these effects are less severe, but also more lasting since we must take AIs for 5-10 years. But many people get no or mild side effects--count me (knock wood) in that second category.
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As far as having ovaries removed to eliminate the need for AIs, that probably won't happen. We make estrogen and other female hormones in other places in our bodies, like the adrenal glands and in our fat. Getting rid of the ovaries shuts that source down, but will not take care of the other places. Since we can't live without our adrenals, I guess we're stuck with that. Sorry to say, we will most likely all be on our AIs for about 10 years."
My understanding is that recent studies are showing that tamoxifen is more effective with ovarian suppression, and that AI are slightly more effective than tamoxifen. Would not get my ovaries removed to avoid tamoxifen or a eyes, but rather to make make tamoxifen more effective, or start AIs sooner since I am still a good 10 years away from menopause since I am done having kids, would be an alternative to having shots.
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Sandy, Peachy said she heard no chocolate with AIs. Sorry, that ain't going to happen and I believe someone misinterpreted something or was on a special diet that most of us aren't on.
HUGS!
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Grazy, sorry your oncotype score was in the intermediate range. I'm in the same boat. Based on the pathology and her clinical experience, the MO was certain it would be low teens. She was shocked when the left side came back at 20 and the right side at 24. The hubby and I are both in science so I hear you about trying to tamp down the emotion and make decisions based on the science. The first time I had met with the MO she gave me a recurrence number based on the pathology of 7% . After the oncotype scores came back the risk scores doubled.
Make the decision based on the info available and your own personal comfort level and don't look back. Best of luck.
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Poodles, I'm so sorry to hear about your husband. You're finally making great progress with your own wound healing and now this. Fingers and toes crossed for his appointment on Friday and you are both in my prayers.
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Had my surgery today. Walked in like Peggy did. Glad to be finally doing! Not sure how big of incision yet. Bs gave me a local after surgery to minimize the pain + tramadol as needed. Icing every 30 minutes for 20min. (When not sleeping ). So just tryng to rest. Tired but doing well. Post op appt next Wednesday, bs believes she got it all, post op will find out for sure. Family aggrevated with me because I'm not just "sitting " I am taking it easy & resting but feel able to get up and get my own meds & ice. DH is helping with heavy stuff.
Thanks everyone for welcome & sharing!
Poodles, so sorry to hear about DH and everything you're going thru. Prayers & hugs to you!
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Tbalding, wasn't that awesome walking to the operating room? Glad you are doing so well. I also got my own ice and stuff. Nothing heavy. I was tired, not an invalid. But do take it easy and let your body heal. Fingers crossed the margins are good and everything is gone!!! And it is very nice to have it over with.
HUGS!
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Hi Froggie, I just logged on and saw your message to me - perfect timing. Thanks for your post. Since yesterday, I've been fortunate enough to have four oncologists from Boston to Florida review my pathology report and Oncotype score, and the vote is 3:1 in favor of skipping chemo when weighing all the factors. It's interesting when these "weigh ins" are done as a personal favor (husband works in the oncology world) no one is treating me like their patient and saying well, you can do whatever like, it's really your choice. It's more "based on this and this and that, I wouldn't bother if I were you.....". Straightforward and to the point, which I've appreciated and I've also appreciated hearing the reasoning behind their opinion. They're all just opinions when it comes down to it. I am very curious to hear what my own MO has to say tomorrow. If she can make a solid case for why I should do chemo and has the data to back it up, of course, I'll seriously consider it. We shall see what transpires tomorrow:) As everybody says, we make our decision, one that allows us to sleep at night, and we just can't look back. It really is such a personal and private decision when it comes down to it. I'm trying to just listen to the doctors right now and focus on what is best for me, and know people will support me in whichever direction I decide to go.
Dorothy, thanks for checking in, too. Appreciate it! To combat any anxiety I felt tonight, I did my go-to: red wine and Pringles!!! The odd combination works every time! Goodnight, all.
P.S. I didn't read through the many posts I've missed today but I hope everyone had a GOOD day!!
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tbalding - glad to hear your surgery went well - take care!
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Grazy, So glad you got all those opinions. You are sure armed with a lot of information that most of us never have the opportunity to get. And I like your go-to sleep inducer!!! I'll be with you tomorrow. Please let us know how it goes.
HUGS!
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Poodles- So sorry about your DH. Wishing both of you the best on his scans and onyour search for a workable treatment plan.
Peachy- Almost had an anxiety attack when I read your comment about chocolate on AI. Found a resource that indicates both alcohol and chocolate can contribute to bone loss on Arimidex....but not expressly forbidden, so I quit breathing into a paper bag. Everything in moderation!
Froggy, Peachy and Kanelli- Another advocate ...a 3-D mammogram and ultrasound identified the tumor in my right breast and my BS ordered a pre-surgery MRI that fortunately didn't identify anything else that was suspicious. That gives me peace of mind as I begin treatment. My BS called today as follow up to last week's lumpectomy and both lymph nodes and surgical margins are clear. Looks like treatment will be rads and Arimidex.
On the topic of ovaries...I had a hysterectomy at 51 due to fibroids. My GYN encouraged me ( and I agreed) to have my ovaries removed as well. His reasoning was the elimination of risk of ovarian cancer. For what it's worth, 10 years later I take comfort in that decision after a BC diagnosis.
Brandford - hope you are doing well post-surgery!
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Katzpjays, I cracked up reading your response to Peachy's no chocolate. Moderation is good for most everything. I do wonder about some of the studies that are out there, though. Seem to make no sense. Oh well. Take care.
HUGS!
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I will be having a lumpectomy this Thursday. My palpable lump did not show up on mam, ultra sound or MRI. Dense break tissue seems to be the answer. Don't know if this lump is cancer. Have to wait for pathology report. Years of great mammograms and didn't know I had very dense breast tissue
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Peggy, the referenced nutrition article basically listed specific foods that can contribute to bone loss and others that can help prevent it. Example : Chocolate bad, carrots good. One of each and maybe I call it even, lol!
Bet you will love Spokane...and it's great not having any state income tax in WA!
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my mother had ovarian cancer at 72. She was in stage three. I was 40 then and had mine taken out. Best thing I ever did. Funny thing my mom beat ovarian cancer . sHe died at 90 of altzhemiers. Get them out but you will go right into memo pause. That part was not fu
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Ah, yes--when I moved from Seattle to Chicago I got sticker shock at tax time, having to write a second check to Springfield. But I should count my blessings--at least when I lived there NYC had its own income tax. Drove my parents nuts every April.
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Welcome bougain, PolkaDotPur, Ozpoppet, and MaeveK.
tbalding, ShippyMom and brandford glad surgery is now behind you. Hope everyone's margins are clean and your recovery goes smoothly.
My rads simulation was 2 wks ago. They made a torso mold and drew all over with me with a purple marker. I had one cat scan done with normal breathing and one down with a breathing apparatus with a clip on my nose. I was only able to hold by breath for 25 second. Unfortunately, I can't go without swallowing for an extended period of time and I found out the hard way that when you swallow with a nose clip on your Eustachian tubes plug - good times - not. When they were satisfied with the scans, they put one tattoo on my sternum and covered the purple marks with waterproof tape. I specifically asked the RO if I needed to worry about overlap of fields down the sternum as a consequence of doing both sides and she said no she wouldn't let that happen so that was a load off of my mind.
They will be doing a film simulation of the fields on Friday on the left side. On Monday they will Tx the left side and do the film sim on the right side. RO is using the Canadian Protocol so I have 15 reg Txs and 4 boosts on each side. I'm really antsy. With having both sides done, My total accumulative rads dose is twice as much as everyone elses. The RO is worried about low blood counts since I'll have ribs on both sides hit so she'll be monitoring for that. I will definitely be using the breathing apparatus during the rads to the left side as it moves my heart out of the field.
I don't have it in me to drive 1hr45min 5x a wk so I'll be staying down there 3 nights a wk. I'm trying to keep my life as normal as possible so, I'll drive back on Wed after rads, go to my class on Thurs and head back down to Baltimore right after class. Will return home after Fri rads for the weekend. If nausea or severe fatigue becomes a problem near the end, they'll find a sub to finish up my class. I'm hoping it doesn't come to that. My students informed me that the sub that filled in the week I had surgery did a really crappy job. They no longer have grades or transcripts here. They do detailed assessments and I don't want them done by a sub who has no pre-existing knowledge of my students. Those assessments get sent to all the places where they are applying for residencies so they matter.
I'm not a big water drinker so I'm chronically dehydrated. It sounds like that will be a problem during rads so I have been been doing my best to choke down water but that hasn't been going so well. I need to go over to the rads board to see what tips are over there.
That's about it for me right now.
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NYC has it's own income tax?? I had my ovaries removed with my hysterectomy in 2011 at the recommendation of my gyn onc (I did not have cancer then) due to family history of BC. I can tell all of you that hasn't gone through menopause yet that's it's not fun at all. I went on HRT and spent two years trying to find myself again. Finally got sort of comfortable and ended up having to stop because I was diagnosed with breast cancer. At least stopping HRT wasn't horrible by then except for my Estrace vaginal estrogen. I am still having problems with atrophy despite my best efforts to stay ahead of the dryness.
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Katzpjays, woohoo for negative margins and clear nodes.
Welcome fleecelady. Good luck with your surgery. I'll be in your pocket. When you fill up to it, please let us all know how it went.
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Fleece lady, welcome and I hope you end up with a benign result. Froggie, I will be in your pocket for your rads. It sounds intense. I hope you are comfortable sleeping on your back. Are you stocking up on aquafor? Have you considered getting a cooling towel?
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Molly50-I'm with you. Had to ditch my estrogen ring due to BC diagnosis. Total bummer. I'm pretty much over menopause, but guess I get a do-over of sorts when I start AI.
Fleece Lady - Good luck with your surgery! Wishing you benign results :-
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Those of you considering removing your ovaries, if you are youngish you may not want to do that. Our ovaries provide protection for our bones, heart and brain. Once you are done with hormonal treatment it is better if you can return to some sort of normal. Even after menopause your ovaries continue to have a purpose. I am glad I removed mine only because of my family history and my genetic mutation.
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Katzpjs, I love your screen name.
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Katzpjays, I’m envious that you live in Woodinville! I used to practice law in Bellevue and on occasion did Fri. morning court call in Fall City, Then for lunch I’d drive (about 20 min) to Ch. Ste. Michelle for a baguette, a sausage and a glass of wine on the grass, listening to live jazz (and then a nap and coffee). Ten years later, I tried driving from Salish Lodge in Fall City to Woodinville....it took nearly two hours because of all the traffic. (Gee, thanks, Microsoft). Ironic to be so close to the wineries but have ER+ bc.
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FleeceLady, Welcome! You've come to the right place to have any questions answered. We're warm, comforting, informative and funny. Please do fill out your profile and make it public. That way we can be reminded of your diagnosis, treatments and planned treatments. We also would love to know where you live. Who knows, one of us might live nearby. And sometimes your treatment path can be influenced by your location. We're in your pocket for surgery (is it today or next week?). I am still rather skeptical of nutrition studies. Just wait a couple more weeks and chocolate will be good for your bone (YES) and carrots bad. I'll stick with what I've been eating.
Katzpjays, dang. You would be on the wrong side of the state. I'm really looking forward to the move. AND because there's no state income tax, I can keep my Michigan accountant for my taxes. (Not only no state income tax but I get rid of my city income tax, too!).
Froggie, That's tough getting both breasts done. I know the RO will be careful. I'm glad you will be able to stay near the radiation center for most of the week. I suspect that you might experience fatigue with that double dose. Hopefully it is annoying rather than a problem.
HUGS!
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Good morning! I had two excisional biopsies on Tuesday and am now waiting to get results. My excisional biopsy last year of my left breast ended up having DCIS and LCIS. Follow up imaging in January included two findings in my right breast on mammogram that were new as well as five solid masses in my right breast, identified on ultrasound. I had two core needle biopsies that produced a bunch of benign findings. But, that is what happened to me last year, benign findings on the core considered to be discordant. This year though radiologist and pathologist said concordant which really surprised me. The MRI came back with no findings but I have all these bad clinical signs including skin pitting(reported to my BS in Oct of last year), dimple below the nipple(reported to BS in January of this year), followed by nipple retraction(reported to BS in March of this year). I had spot compression and magnification views followed by ultrasound last week that showed the two areas biopsied had doubled in size since January. So, those were the two spots removed in the excisional biopsies. With my LCIS diagnosis I know that I am at increased risk for contralateral breast cancer as well as ILC.
The good news is that I'm feeling pretty well after the two excisional biopsies. The BS had to make two incisions.
Peace and healing,
Nancy
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Grazy, I had an onco score of 24. My local MO pushed for chemo. When I went for a second opinion at a cancer teaching hospital. I got a totally different picture and decided to skip chemo. They gave me a whole different picture of the benifits of chemo.
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tbalding, glad your surgery went well!
Sandy, I love your "born-again empiricist" posts. I always learn something! I have no recollection of where I read that there are issues with chocolate and AI, but it stuck with me. This is how rumors get started, and why I work in marketing and not law or medicine. ;-) Katzpjayz, thank you for the clarification!
Molly, I appreciate your perspective on oophorectomy. Gives me more questions to ask the MO.
Grazy, how wonderful that you have been able to gather so many expert opinions! I wouldn't wish chemo on anyone, and didn't get Oncotype testing because the surprise of being node-positive made my decision. Love your red wine and Pringles combo. I have a friend who is a wine expert and educator and she swears that champagne and Popeye's fried chicken is the best meal ever.
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Welcome InStitches, I hope you get a plan in place. It sounds like bilateral mastectomy might be the best way to get ahead of your risks.
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