CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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octo, congrats on retirement, you will love It!
Well got all my stuff lined up now, biopsy tomorrow, followup with onco on Monday, then follows with cardiologist
And tummy docs on Tuesday, then followup with primary doc on wed,
Definitely in crazy town next Week!
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Iris, having gone through all those cardio tests myself (decided at the last minute, despite lousy knee, to give the treadmill a try after they told me what the chemical stress test would make me feel like), the fact that they didn’t give you results right away is a good sign—if there’s something truly concerning, they’d have told you right away. (The cardiologist told me my stress EKG looked like a little left ventricular hypertrophy, but he said that was basically meaningless, and my PCP and my husband—also a cardiologist—agreed. Everything else was dead-bang-normal).
In your pocket for results and biopsy!
I have my onco appt. Thurs.—I’m asking not for luck, but for courage, as in “chutzpah.” Remember when I said she refused to give me Prolia back in Aug., saying (via her NP) that she couldn’t get prior auth from my Medicare Part B or D carriers for Prolia due to the cost ($5K/shot)? Well, I have since found out that’s basically b.s. (and I don’t mean “breast surgeon”). When I got my EOB from BCBS, I saw they paid $3800 for the Zometa alone, not including the nurse, blood test and chemo suite. I have since learned that even hospital-based cancer centers get a big discount on chemo and other I.V. drugs, and their employed oncos essentially must try to recoup that cost by selling them to patients. My guess is that KCC has a stash of Zometa but not Prolia. I went to the Prolia Plus website, which says that both BCBS Part B and Humana Enhanced Part D cover Prolia (the Part B w/o prior auth)!. And with GoodRx’s coupon (if I do have to go out-of-pocket), depending on where I buy it, it’s around $1K per shot, which I can have my PCP, MO or even her NP administer in-office.
My PCP also says bisphosphonates don’t protect long bones, and they are inferior to Prolia when it comes to preventing or delaying bone mets and though they have the same potential rare SEs, Prolia’s are rarer. (He says he wouldn’t even have put me on calcium supplements were I not osteopenic and on an AI—just order me to walk more). So wish me the chutzpah to look my MO in the eye and tell her I know what’s up, and that my PCP is willing to order Prolia (and get a prior auth if necessary). Downside, of course, is that I can’t take the shot till I’m fully over what’s going on in my sinuses, throat and lungs. (The lung part’s pretty mild—any wheezing I feel is actually in my throat & trachea, not my bronchi). Prolia is a biologic and therefore can temporarily immunosuppress.
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M0mmy, congratulations on the good news. Octo, congratulations on your retirement date! In your pocket for your mammo. Sandy, wishing much Chutzpah with your MO.
So my DD 24 has my chek2 mutation. She was also having pain on her left breast. Her pcp and her gyn won't order the MRI the geneticist recommended because the paperwork seems to have gotten "lost" in between two networks. So her gyn ordered a whole breast US. She had it yesterday and the results landed in her portal today. She has a cyst at 2:00 in right breast. I told her that is pretty normal. Her left breast though (where her gyn did a long physical exam) has an axillary node that is 1.3 CM. Report recommends a thorough physical exam. Birads 2.
I told her to call her gyn tomorrow if she doesn't call her today and see if they will order the MRI. We'll see what happens. I told her not to be surprised if they recommend a 6 month follow up to the US.
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Sorry to hear your DD inherited your mutation, Molly. That enlarged lymph node could be from an infection somewhere, even if just a canker sore or a zit. (The immune system is prepping for a fight). I used to get swollen glands just before my period!
Even though it’s only BIRADS 2, a 6-mo. followup sounds reasonable because of her youth and the mutation. (BIRADS 1—no anomaly; BIRADS 2—benign anomaly; BIRADS 3—probably benign anomaly, short-interval followup recommended).
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sandy,thanks for feedback, the nurse who called me today to discuss time of my biopsy said my reaction was pretty normal
Now let us see if I sleep tonight
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Thank you, Sandy. That is what I told her. She doesn't know when her cycles are because of her Mirena. I told her it could be just from her cycle but Birads 2 should be watch and wait.
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Thanks for the shark story and the advice above about keeping busy is spot on. When I slow down and my mind starts going, time for Ambien and bed!
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Iris, in your pocket tomorrow!
{{Molly and daughter}}
Octo, woo-hoo indeed! Congratulations on a long-and-well-thought-out decision!
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Iris ..Thinking of you !!
Octo ..Congrats ..Retiring is a hard decision to make ..but I know you won't regret it ..!!!
Molly ..Sorry to hear about your daughter ..Seems like there is always something to worry about 😞...Hugs to you both ..
Love to all ..
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I learned something amazing about my son Gordy yesterday! I've been telling everyone who asks that he is an improv comic/actor/writer/tech person at the pH Comedy Theater in Andersonville (the trendy 'hood just to the south of us). Well, he is—but that's his evening job. When I asked the shrink how well he's doing, he said, “Great. The remote job is a really good fit for him." Remote job?
Turns out that for months he's been writing via e-mail & Skype for a morning digital cable TV show in Florida, which explains his bizarre hours: sleeps most of the day, does his theater work, then comes home and stays upstairs in the attic writing nearly till dawn. (I'd always assumed he was just a night owl, and that he was writing to build a portfolio, for sketches for his shows, and just to keep up his chops). He digests the news & sports shows locally, nationally and on the East & West coast satellite feeds so his material—co-host monologues and “bumpers"--can be timely, and then submits it for a Skype run-through an hour before airtime (which is Eastern time, so he's gotta turn it in even earlier Central time). Then he feeds the cats and hits the sack.
I had no idea! I asked him why he hadn't told me (one would have thought he'd have at least “humble-bragged"), and he said that there really isn't any job security in showbiz (don't I know it!) and didn't want me to feel bad if it ended. (I felt really awful for him when he left his weekly topical revue he was writing, producing and directing at another theater, because so many of the cast weren't taking it seriously enough; and when his improv team got cut at i.o.).
I am so proud of him!
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Sandy, good for Gordy!!
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Sandy ...Gordy certainly did have a secret. !!
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Good going Gordy!
Iris I am with you, in your pocket!
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GMA ...How are you ? I've been thinking of you...
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Hi Lucy - I have been an emotional basket case since I came back from Mom's funeral. Everything seems to tee me off and I cry at every whim.
And now I'm ready to take on my old insurance company - They paid for all my medical bills in Dec. 2015 and in 2016 they took their money back saying we didn't pay our monthly payment in December and they terminated us. Say what??? If they didn't send this last eob in December 2016 we wouldn't have caught it. So now I am in real CT - that was the month of one of my revision surgeries. Just got off the phone with my surgeons office.. We were wondering why our bills jumped up so much. My DH says he will take care of it... we have proof we paid all the bills on time.
Today - before the fiasco above hit my emotions - I talked to my oncologist and took him up on the offer of giving me pain meds and doing the mammogram. With my husband off work for a month and insurance denying the MRI we couldn't afford it. It has been almost 3 years since my last mammogram - Some of my BC sisters around me are having recurrences (not talking about just BCO) - I couldn't tolerate the AIs and just don't want to take the chance of missing anything. My tumor wasn't found in the mammogram the first time round, but maybe with the reconstruction/reduction, if there is something they would see it. [before anyone asks why - My breasts are so painful just to touch - why would I want them squished?)
Thank you for letting me cry, vent and fall apart in front of you all. CT is the best to find wonderful ladies to support you.
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((((Gma)))) good for you getting the mammogram. Hopefully it won't be too traumatic. Sorry about the insurance bull. Big big hugs for your loss.
Okay friends for the first time since all this BC stuff I am a bit scared. I have been having migraines that last 24 hours or more and they keep coming back. At what point is a call to MO warranted?
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Molly - I find my migraines were caused mainly with stress or being dehydrated - but if you have done everything you know to help them, I would call and have it checked out. I remember when I was first menopausal, they would lay me out for a day or 2. Usually stress, dehydration, heat, bright light or overtired would trigger them. I had a total of 4 brain MRIs that were negative. Once I became post menopausal they stopped.
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Sandy, I wondered about what your MO had said about Prolia not being covered, because one of my co-workers who has since retired is taking Prolia, and I can't imagine that Medicare isn't her primary insurance. It didn't make sense, but I wasn't going to be most and ask her how she was paying for it. And good for Gordie on his secret job!
Gma, was a mess with the insurance! I hope your husband can get it straightened out quickly.
Octo, congrats on setting the retirement date!
Molly, I'm sorry to hear your daughter inherited the mutation. I'm glad they're being diligent in screening her right away. I'd be inclined to call the MO about the migraines. Hopefully it is just stress, and maybe they can help you break the cycle.
Iris, hope everything went well today.
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Insurance companies are good, honest, helpful people and the salt of the earth…said nobody, ever!
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Yup Sandy - you are correct in that... The one we switched to in 2016 was great but then raised their rate this year - $999. a month just for me. We had to switch once again - I hate playing health insurance roulette.
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Morning guys,
Thanks for all your good thoughts yesterday. I am sure others here have had liver biopsy so you may know they are a tad wierd feeling but not terribly painful. Came home after them keeping me 6 hours to be sure no bleeding. Dang boring there and really tired. I could see the screen of the ultra sound they did before the actual biopsy. I was told in the past that cancer lit up the screen. Well if that is true then it is cancer not sure of course if new cancer or spread of the breast cancer, then again, not sure it matters,
Trying to wrap my mind around this, I knew it was a strong possibility but was sort of in denial and kept hoping it was not. Lots of questions to ask the onco when I see her on Monday. Thinking if I should take my pal the retired nurse with me. One of my questions will be if chemo, could I do it at one of their branches which are much closer to me. One of their branches is actually Sloan Kettering and much closer.
Instructions are no lifting more than 5 pounds, actually have other questions for when they call me later today as followup
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Iris - thank you for updating. I have been thinking about you yesterday and today. I think you have taken your friend with you before - I think it's a great idea to take her along again. Sending you virtual hugs.
Barb
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(((()) Iris))))) don't get ahead of yourself but please do take your friend with you. You continue to be in my prayers.
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Iris, I agree with Molly - I am continuing prayers and hugs for you!
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Iris, I agree with the others. Take your friend with you.
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{{{{Iris}}}} Please yes, do take your friend. A retired nurse sounds like exactly the right person to take with you.
Keep us posted, hoping for the best!
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Iris ..Thinking of you through all this ..Just wondering ..Could the " lighting up " you saw just be where they were assessing the blood flow ? Yes ..Take a friend with you ..I'm praying for good results .
GMA ..Ugh ..How annoying about the health insurance ..Our system is different over here ..Our doctors seem to beable to order tests of their choice ...Yours seems to be that the health insurance companies call the shots ? We can go public or private ..But every year the price of private goes up in cost by quite a lot ..🙁
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Iris, just adding my 'ditto': thinking of you, try not to worry, and take your friend with you to your appointment for sure! We all send love!
Octogirl
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lucy, you could be right
One of my other pals already to me not to jump to conclusions. Trying to keep that in mind
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(((Iris))). Many things can “light up” an ultrasound or nuclear scan, including inflammation. (In 2004, when a chunk broke off my iliac crest, my bone scan lit up…but then my orthopod remembered that one of his partners had harvested bone from that exact spot back in 1996 for a tibial repair. So the official verdict was inflammation). You might have a slight infection, or your liver might also be working overtime getting something out of your system. And even if cancer, it might not be mets—in which case, you can live with part of a liver—the healthy parts can regenerate.
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