Lumpectomy Lounge....let's talk!
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123JustME - I started a binder (the cover says "Some Days It's Tougher to Hang in there than Others") It has been a life saver! I would be loosing my mind with papers and notes, etc! This is great advice!
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I want to know every piece of information there is and I want it in writing! My friend (who I like to say got me into this whole mess) had an excision biopsy just before my dx. (Her scare is what finally got me in for my first mammogram and lead to my dx). Her biopsy came back benign. I asked her what it was and she has no idea! She hasn't seen the pathology report, she doesn't know how big the excised piece of tissue is, etc! I can't even comprehend! I keep telling her to get her pathology report because I NEED TO KNOW!!!!
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I'm going to start a binder, too. I've been carrying around the piece of paper from my BS in my purse for a week - I get it out and look at it, then I fold it up and put it back - then I get it out again, to see if I missed anything, or to see if it's miraculously going to say "just kidding, joke's on you"........it's getting pretty ratty looking already, and I'm sure I'll keep looking at it numerous times a day until my surgery 15 days from now......
As a matter of fact, now that I think about it, I'm going to go scan it into my computer RIGHT THIS MINUTE. And then get a binder.
thanks!
Kathy
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Kathy, I scan everything in too. Then I put it in a folder on DropBox. I believe in having information EVERYWHERE!
Thanks for updating your profile! You're not THAT far away. Maybe next time we SE Michigan gals have a get together (in Jackson, MI), you can join us! We meet at a winery and it's lovely. We're awfully nice and you'd like us! Know we'd like you.
(BTW, that invite goes to anyone. No date for August has been set yet and we'll also meet later this fall). Post here if you are interested SE Michigan Get Together Gals We welcome everyone!.
HUGS!
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SERIOUSLY??? Oh, that would be SO GREAT! Thanks for the invitation!
Kathy
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Definitely seriously. We've met 3 times now. We talk non-stop (shocking, isn't it?). Have lunch and maybe a glass of wine. It is the most peaceful place. No date has been set for next meet up. We have one gal from Oregon who comes in to see her mother in Indiana and she joins us. I'll post here when a date has been set. Also, Kathy, you or anyone else, if you are interested, PM me. If you give me your email address, I'll put you on the mailing list! Take a look at the venue Sand Hill Crane Vineyards. Yummy wines.
HUGS!
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Peg....wish I had an excuse, time and money to come to SE Michigan. One of these days I just might! Even the name of the winery is wonderful: I live very close to a wildlife refuge that is a regular stop for Sandhill Cranes, Snow Geese and Canadian Geese during end of winter migration. It is amazing to see thousands of those birds at once.
Kathy, as others indicated, keep copies of everything (I haven't done a binder yet but keep a file and take it to all appointments! And, welcome to the club that isn't fun, but that has some wonderful members!
Speaking of keeping copies, and my prior unhappiness over waiting, the MO's office just called me back, and after some questioning and back and forth, she said they didn't yet have the surgery pathology report! WTH? (Indeed, until I corrected her, she assumed I hadn't had the surgery yet, since she didn't see any surgery pathology report in my file, even though It has been almost two weeks now). As soon as we got off the phone, I called the BS office staff and they verified that the MOs name is listed to receive it along with my GP and BS (in fact, I just confirmed that myself on my copy)....so it really should have been in my file by now. BS staff person said she would fax it right away and would call them to confirm receipt.
Sigh. Well, no wonder they aren't answering my question about oncotype yet. I am not happy. In fact, I feel like crying. Do these people not know that it is really hard it would be to drive all that way for every appointment and then have to wait AGAIN for more answers because I had more information than the doctor does? It is not unreasonable to expect that the doctor will read my FULL file before I get there, is it?
So yeah, we must be our own advocates (or have someone we trust to advocate for us). More so when we live in rural areas or don't have the best health insurance or otherwise don't have the same wonderful access to wonderful health care that we all should have. (rant over).
Octo.
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Octo, I had to smile on my Oncotype test results. The BS called me with them on the Friday before Labor Day. I saw the MO and RO on the day after Labor Day. Got the results 3 times and each time I pretended I hadn't heard the results. Do note that it was 5-6 weeks AFTER my Lx!
I have yet to see a Sandhill Crane at the winery. Wouldn't know if I did probably. I know how expensive it is to travel. But if you're here for any reason, let us know and we'll get together!
HUGS!!
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I was wondering if anyone here has been prescribed aspirin daily to reduce the risk of recurrence?0
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I was already taking low dose aspirin as a preventative for another health condition. Both my PCP and MO reconfirmed that it was also beneficial against breast cancer and to keep taking it.
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Octogirl...I am so sorry you are having a hard time getting information. It is bad enough what we have to go thru without the added burden of trying to get answers. Stay on them until you get what you need. Best of luck!!
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I am going to see my MO tomorrow and will definitely be asking about it!0
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123JustMe, there was a scholarly article indicating low dose aspirin is good for preventing recurrences of BC. My MO was all onboard. I'm on it now.
HUGS!
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Y'all, just have to give the reminder to not take aspirin (even low dose baby aspirin) if you are going to have surgery or a biopsy, as it increases the risks of bleeding. Get your doctor's ok regarding when it's safe to resume the aspirin.
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I've been taking low dose aspirin too...figure it can't hurt 😏
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welcome, Kathy! Ask away for those results - I requested a file be emailed to me with each pathology. Doc's office sent it right away. Got all results within 7 days of surgery. The more I learn, the more I go back to those reports.
Score one for you, octogirl! I know you are disappointed, but you just prevented the scenario you were worried about. I like to have as much info in the docs hands before an appointment because I'd rather hear the plan face to face, and to avoid the ever evolving treatment plan. So I push for "do we need more mammos, bloodwork, etc, so it is all done & in the docs hands. Just a way I feel like I have a smidgen of control. And isn't that what we need most to handle this?
Cleaning & nesting before surgery? Never considered it, haha. Might have been a good idea
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I am a terrible housekeeper... My version of nesting is to surround myself with stuff I can't be bothered to pick up and return to their rightful places!
My sister came down and nested by cleaning up everything in my house, though!
Hmmm! I took low-dose aspirin before my dx but stopped when I was getting bruises, from heparin shots in the hospital and other stuff. I hadn't heard it was good to prevent re-occurrance. I'll start taking it again, I think. Maybe after RT... and not near my Herceptin infusions...
My seromas aren't sloshy at all. They feel like big bumps where the tumor was and around the incision-- very solid and swollen, but just in specific areas where they removed or cut stuff. It seemed to get worse (harder/bigger) with the RT, but maybe that was just coincidence. They don't hurt or anything. I figure they are keeping a possible divot from showing up, although I assume the seroma will go away eventually and the divot will be left!
octogirl -- It's not a good feeling thinking your MO isn't doing all he can for you! I'd be ranting, too. Sometimes I worry about that, but I trust my MO. I had to switch to him from another guy who I had to watch and be a self-advocate for EVERYTHING... It was pretty horrible. Good luck with getting your MO to keep on his toes! It's his job to do this and he's not getting paid pennies--plus, really, he should be doing this because he cares and wants to help his patients, too!!! *sigh*
peculiargirl -- I remember the first month or more after DX as being a total nightmare! I still feel that I've gone into some sort of crazy-world (sort of why I've got that avatar/icon), but more and more of the normal world is coming into the picture now. It's a wild, longer-than-you-want sort of ride, but it gets a bit less crazy as you go along, and there is light at the end of the tunnel! --This board helped out a LOT! I hope it helps you deal with all this better, too!
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I'm also in the terrible housekeeper category. I *can* be, I just don't. I had a lady come in and do a good cleaning before my lx and before the kids arrived to care for DH. It was hard keeping house when DH was here. And until recently I haven't had the ambition. Today I vacuumed! But I do understand the nesting. Under different circumstances I know I would have cleaned away but I played the hand I was dealt.
HUGS!!!
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Going to see the MO first thing in the morning! Praying for no surprises on the pathology report!
Isn't life too short for housework?0 -
123JustMe, yup. Life is definitely too short for that 9 letter word! I'm leaving it for the kids to do when I die in 40 years
Fingers, toes and eyes crossed for a great path report!
HUGS!!!
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Amen to that on the housekeeping approach, Peggy!
123JustMe, hope it goes well! and thanks to all of you for the support as I wait anxiously for my own MO appointment.
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Good luck tomorrow 123justme praying for no surprises!!!
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Good luck justme123! I don't knw anyone who "likes" housework. For me, laundry is the worst. With kids it never ends....ack! No call regarding my path today. I'm really trying to recall my Monday conversation at my post op with BS. She said she thought she 'd get my initial path on Tuesday and it would be reviewed by the weekly tumor board. I think I just assumed that meant they would call me with results. I have my MO on Monday so I know I'd find out then. I'm toying whether to check tomorrow or not. Sometimes ignorance is bliss and my biopsy path was so favorable it's scary to know a curve ball could easily be tossed my way. I will have to ponder.0
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Some of y'all must not live with indoor pets--vacuuming is a must in the south during the summer months when Everything sheds! And believe me, although I clean when I'm anxious, my house still is a mess.
Octo, I feel your pain and sorry it's been so frustrating. What part of Calif are you in? I used to live in rural Humboldt Co--our clinic would make home health visits to the very remote areas of NW Calif and I remember how tedious those drives were.
My MO said an oncotype might be warranted, based on all the biomarkers. Unfortunately, the tissue sent from my July 1 stereotactic bx was not useable for those tests, so they had to use the tumors from my July 17 Lx. I know that my er & pr are both strongly positive, but waiting for a repeat Her2. Then the hospitals tumor board will discuss the value of an Oncotyoe..
Oh yeah, my MO leaves for a 2-wk vaca next week so I will prob get someone new. No biggie-as long as she/he doesn't put me on shuttle buses with IV bags haha.
Ok, it's 10:43pm and I have to wake up at 3:30am to drive to the airport. Night nite everyone! Sweetmama out
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Plumster, I understand your dilemma. I guess I would be tempted to call just because I hate not knowing. But that's me. Fingers crossed for great results!!!
HUGS!!!
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SweetMamaJ, Try to take care of yourself over this long weekend of swimming. Good luck to your son!
HUGS!!!
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sweetmama I cannot get over the visual of the bus. That's horrid and funny and not funny at the same time all rolled into one!
Rigelle sloshing drove me mad. It was a constant reminder that I had had surgery and made me feel queasy. It was so awful. Mine did go away, here is hoping yours resolves as well.
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Welcome Kathy. I had my Lx today. The snb was positive for cancer so I had an alnd. I have one drain which should be removed Tuesday during my post op appointment. Anyone know if you can wear a bra with the drain or should I wait. It's not in my post op instructions.
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Molly50, I'm sorry that your nodes were positive. That sucks. I don't have any answers for you but I know the ladies will come through. I hope you are comfortable.
Many gentle HUGS!
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Will be thinking of you all day 123justme. Peace!
Molly50, sorry to hear about your positive nodes and alnd.I get how hard it is when each each report keeps revealing the "rest of the story." Prayers for smooth healing and dealing with the drains. I dodn't have any so no help there, but my surgical bra had pockets for them.
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