Lumpectomy Lounge....let's talk!
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Dizzybee, I just started taking Arimidex and my MO said Tamoxofen was for pre menopausal and Als for post menopausal..
I wish my sister had this site to go to when she had her mx.. she had chemo and is a 22 year survivor, so things have come a long way in that time and I am fortunate to have all of you here and access the the newer technology
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Sometimes Tamoxifen is given to post-menopausal women but, I think, after a course of AIs. But as a general rule Tomaxifen is given to pre-menopausal women.
HUGS!
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thereisnode,
Girl, you are so fun!! What is the weather like in Israel today? It is beautiful where I am at 70, sunny, blue skies. My daughter (18 now and a university student) informed me that we are going American Eagle to buy her jeans after her last class. I told her, I have 45 minutes and then I have to go get "my suntan" (radiation). This year has been a tough one, to say the least. But the women on here have made these last few months tolerable. It is amazing how far, emotionally, people come from diagnosis, surgery, treatment. I literally hid at my sister's house for two weeks, only coming home at night. My kids and husband felt powerless, and it was easier on them to know my sister would take care of me emotionally and otherwise. Two months have gone by, and now I can stand up to whatever is thrown at me and take it in stride. I found a couple of quotes yesterday, one from a New York Times journalist who went through prostate cancer, he says, "mortality is no longer abstract and a certain innocence has been lost." Another tidbit quote found in the response section of the article, "......lasting effects that diagnosis and treatment have on you." That is the way that I feel, an innocence has been lost. Sad, but insightful............
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B"H
So you come, we have a few good laughs.... My 19 year son buys his jeans too at American Eagle - the world has become a very small place..... I think you could find a good market her for your gorgeous jewlery!
And so the question (maybe) is... we are doing the RADS, and the hormonal stuff, and count are blessings... and we know we have gone through so much in relatively a short period of time.... are we starting to think where do we take it from here? What we have been through, the good and the bad things we have experienced on many levels, how are we different than who we were before this journey???
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I’m just happy I got through Yom Kippur. (It’s actually a very solemn day, the holiest of the year, when we are grateful for the grace we receive for forgiveness of transgressions and—ever since the forced conversions of the Inquisition--release from un-keepable vows; as well as for having been given this past year of life, and hope that we’ve been inscribed & sealed in the Book of Life for yet another). Hey, no hard feelings: I never knew until I took Comparative Religion as a college freshman that Good Friday isn’t a day of rejoicing for Christians! (Good thing I never told anyone, “Hope your Friday is Great, not just Good”). I really didn’t know diddly-squat about Christianity (other than that it was divided into Catholic & Protestant, had a second volume of the Bible, and that unlike us they believed in Jesus—though we knew He was Jewish) till 10th grade European History—which, of course, was mainly the history of Christianity.
I grew up in an overwhelmingly Jewish neighborhood—half secular, half Orthodox, nobody truly “Reform" other than self-identified as such: you either were shomer Shabbos and kept Kosher or you didn’t, since there were no temples, just Orthodox shuls, in our ‘hood and nobody could have afforded temple dues anyway. The only Christians I knew were Puerto Rican, Italian, and a couple of Irish classmates (all Catholic—we knew that because they got released an hour early every Thurs. for CCD class); as well as our black classmates, whom we assumed were all Protestant because we’d see them walking into & out of their Pentecostal storefront churches. I was ten years old before I met my first WASP—a classmate of mine whom I’d assumed was Irish; after she’d moved out to Suffolk County, we went to her house for Christmas dinner and among the guests were the family’s pastor & his wife. And I was 13 before I found out that there were African-American Catholics—I was in the hospital convalescing from an appendectomy, and was surprised to see my private-duty nurse (people hired them back then to have someone at their bedside 24/7) pray with a rosary.
In retrospect, I chuckle at the fact that our family Bible was not the Tanakh (what is commonly known as the Old Testament, with minor differences in the order of the Books) but rather the King James Version.
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thereisnode,
Exactly, a mental examination from the mammogram date 8/1, to the lumpectomy date 8/30, to rads 10/6, to hormones (not yet started), to survivorship. What does that all mean? I don't know yet. When I had post partum depression, it meant that I started a program for PPD moms after delivery and saw it grow into a part of the entire birthing plan at one of our hospitals. I spent several years ensuring that women would have access to literature, advocated for their mental health in emergency rooms, and saw them off to live their lives. Now that postpartum depression is widely talked about, diagnosed and treated, I am glad I did my part. What happens to me, I tell myself, happens to others. Why did this happen? I don't know, but I would like to find some answers, so I can put it in a nice little box and put it on the shelf. I can't move to the survivorship role, until I can reasonably tell myself, ____________ is why this happened to me. Will I ever know? Probably not.
My 20 year old son is going to a university in Switzerland this semester, for which I am so thankful. My daughter, who is empathetic, does not expect much from me during this time. She has been helpful at keeping her dad distracted, so he has less time to worry. I can carry this burden by myself and I want to carry it with the support from other women who are going through or have walked the same path.
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Oh, goodness. My 30yo son went to the doctor for back pain a couple days ago. Today he got a call from the doctor telling him that he has arthritis and scoliosis in his lower back. He's a welder and is required to lift heavy things. His back is killing him. He doesn't know what to do--he just spent 2 years getting his welding diploma and he's been employed only a month.
This has upset my DH to no end. He has a lot of trouble with anxiety anyway, due to long years of heart and lung problems (he's fully disabled.) It doesn't take much to set him off. He is just about beside himself now. I'm giving him some space because I think he just needs to take some Xanax and have a good cry. I am feeling very anxious myself. If DS has to quit this job I don't know what we're going to do. He needs to move out and get on with his life. Heck, I understand about living with chronic pain. I have excrutiating knee pain 24 hours a day. My DD23 has fibromyalgia and a type of inflammatory arthritis. My sister has rheumatoid arthritis. We all work every day. I don't know what DS is going to do, but we're going to have to hold his feet to the fire or he's going to continue to live at home in a state of perpetual adolescence.
And this isn't even the worst news--I got a call to day from Cigna informing me that they don't plan to pick up the remainder of my bills for chemo. That's right--I owe about $175,000. Before they ever did the first poke, my MOs office did a pre-certification. Had I known that they would not accept the negotiated price, I would have found a different MO. Now Cigna is saying "Sorry 'bout that. Nothing we can do." Guess we'll be eating beans and rice every day until we die. Better get right on that; we're worth more dead than alive. I don't have the heart to tell my DH--this is going to put him right over the edge.
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Poodles, you should have been informed. The insurance company can adjust the payment with the chemo center. You can tell the hospital, well if you can't settle for $2,000, I guess you will have to settle for a medical bankruptcy. No way in hell would I pay $175,000 for Chemo. You know that is an inflated price. An attorney can also threaten both of them for you with a lawsuit about communicating the cost overages beforehand with you. I bet ChiSandy would have an opinion on the legal side.
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B"H
Dear mustlovepoodles - sooooooo sorry you are going through all this.... Please remember things DO change and some often work themselves out .... in the meanwhile lots of hugs, we are with you..... really heartbroken along with you....you are in our prayers
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B"H
Michelle - exactly.... that's what i was talking about - taking all of this and finding a way to help otherts. That's awesome what you did with PPD, it would have been so easy and understandable to be emotionally overburdened when going through it and than just want to forget about it afterwards, put it behind you and forget it... but you found a way to improve things for others....
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Poodles, you have had the day from hell. All I want to do is hold you! I think Michelle has a good idea. First, let's get Sandy to give an opinion, a legal one. She is one sharp lawyer even if she isn't practicing. You need more advice than most of us can give. Cigna is trying to screw you and of course there is always something THEY can do. I'm sorry about DS. My DH had scoliosis and he managed most of the time. Perhaps your son can too. Of course he needs to get out on his own (and you need it too). You're wise giving DH some space to process all this. Many hugs dear friend!
HUGS!
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Poodles, time to talk to the financial people at your cancer center. If they got pre authorization then they accepted the negotiated rate. I agree with you about your DS, he's going to have to figure it out and find a way to work with the pain. Maybe wearing a brace will have. I am sorry life has been so difficult for you guys.
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Poodles, I'm sorry you're going through all this.. do you have medicare, medicaid? I ask because I am on Medicare and was on medicaid, technically I am still getting some help.. but I just talked to a Medicare agent and he was able to get me changed over from United Healthcare Advantage to Medicare United Healthcare Supplement.. and it starts Nov. 1.. I start rads on the 2nd, so they should be covered.. but i am eligible for special help for my prescriptions and it made it possible to change over to the supplement right away instead of waiting til Jan....
I know how stressful this financial is... I still have a big surgery bill to pay.. but it's looking better now... Praying you find relief
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There is no medical bill that cannot be negotiated. It’s partly Cigna’s fault for not being open and honest beforehand about what they would and would not cover, and partly the provider’s fault for not informing you that they were not obligated to accept what Cigna was willing to pay. I’ve learned the hard way that even when you go to your insurer’s website to look up your hospital, doctors and surgeons, and think you’re set, you also need to find out if those providers will accept that insurer. Been in situations where I paid out-of-pocket for a lab that wasn’t in-network (even though the doctor who ordered the test was and accepted United’s payment and didn’t “balance-bill”), and had to negotiate a lower fee for the anesthesiologist on duty the day I had surgery—he was also out-of-network even though the one my surgeon usually used was in-network but absent that day. If you can’t get Cigna to budge, then demand an itemized bill from the chemo center—for the drugs, labor, supplies and all charges—and go over it item by item to see if you’ve been assessed routine charges for services & supplies you never got. Get a good lawyer in your area to do this for you—perhaps on a contingency fee basis (a % of the amount he/she saves you). In probate cases, I’ve been able to get a couple of hospital bills pared down considerably when the hospitals filed creditors’ claims against the estates for the decedents’ last illnesses—there’s stuff that get billed routinely in the hopes that you won’t ask questions. A lot of these inflated overcharges are due to insurers (and Medicare/Medicaid) being willing to pay for tangible things but not for the services of staffers (such as nurses and residents, whose salaries the hospitals pay but cannot directly recoup without that phony fudge factor). So in order to make up the unrecoupable cost of that second-year resident’s $30K salary, you get billed $15 for a box of off-brand Kleenex, $25 for a pair of footies (I once saw a double amputee get billed for that) and $40 for a couple of aspirin or Tylenol. (BTW, it’s always Tylenol, not generic APAP—the mfr. sells it at a deep discount, way cheaper than generics, so it can then boast in commercials that “More hospitals use Tylenol than…..”).
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Poodles, I am so sorry you have all this to deal with, sending love and hugs. I also know what it is like worrying about sons who find it hard to make the transition to adulthood and independence for various reasons. But you have so many things on your plate right now, and you're struggling on alone, I wish there were some way to share the burden.
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Poodles, so sorry for the added burdens. Hugs!
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Just checking in I'll read up later on, I had my surgery yesterday the dr said it went well nipple removed and a cone biopsy to get the dcis wait another 2 weeks for it to come back I asked the nurse if it wasn't clear what happens she said mastectomy is that really the case could they not go in again this is really turning into a nightmarehe said the Paget's is definitely gone cause when nipple goes it's gone,I'm were bit sore bit tired but glad yesterday's done
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mlp so sorry to read all this bad news, I have no advice but I'm thinking of you.
Lorrie glad you are through surgery and hope you have a good and easy recovery. I'm sorry I don't really have answers to the rest of your questions but maybe somebody else does, I hope that your results are clear and you just don't have to worry about it
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At DSs PCP to discuss his bad back. Turns out he has a negligible amount of arthritis, but mod-severe scoliosis in the lumbar spine. Theyre referring him to an orthopedist for further treatment. Good thing DS has crappy insurance. God only knows how much this is gonna cost us.
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Lorri, so glad you are through surgery and hope you are feeling okay. Praying that your margins are good and no further surgery is necessary. Keep us posted!
Poodles, that's somewhat good news about DS' arthritis. Crappy insurance - just what you need. It sure seems that if you didn't have bad luck, you'd have no luck at all. Everything seems to be piling on you. I know we all wish we could help you. We're with you and supporting you. And giving you lots of hugs - wish they solved the problems. Listen to Sandy's advice. As you know, she's our legal eagle! HUGS!
HUGS!
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Lorri, try not to worry until you get your results back. Hopefully they got everything and you can heal. Poodles, argh, I wish you didn't have so much worry on your plate.
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I wasn’t dx’ed with scoliosis till I was an adult, by which time it was too late for the usual cure—surgery or a torso cast or rigid full-torso brace to force the still-malleable vertebra into a normal “lordosis” curve. For adults, the treatment is usually a prescription partial-shell back brace and physical therapy exercises. I found out when I looked in the mirror and saw the buttons on my blouse skewing to the right instead of straight down vertically; confirmation came when I had an epidural for my first knee replacement surgery and they kept missing the epidural space (for some reason, the anesthesiologist for my c-section hit her mark the first time). For my second, they used a fluoroscope to visualize the right place.
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I had an epidural for my first child and that cured me of having one for a second - I went natural. Maybe it's better now but I found that very scary.
HUGS!
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Peggy, me too! Epidural for first and said never again!
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And Molly, it wasn't that I had a bad experience. I didn't. But geez...frightened me. Of course this was 47 years ago. I'm sure things are a bit different now.
HUGS!
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The epidural for my c-section was only strong enough to keep me from feeling the incision and the OB’s taking Gordy out of my uterus. By the time I was delivering the placenta and they were suturing me back up, it had mostly worn off. I had taken Bradley childbirth classes and right up until the OB told me my water had broken too long ago and Gordy was a breech (preemie to boot) who failed to descend, necessitating a C-section, that I consented to an epidural. My birthing plan had included being surrounded by loved ones, flowers, sipping raspberry leaf tea, soft music playing and assistive breathing. That fell by the wayside. My best friend, who also took the class with me, had to have an epidural too after 45 hrs. of labor. Out of the five couples in our class, only one was able to deliver a full-term baby without surgical or pharmaceutical intervention.
The epidurals were necessary for my TKRs, since they were long surgeries requiring I remain pain-free even if accidentally awakened, and that I regain sensation below the groin only once it was time to get me out of bed for my first post-op “torture trek.” My surgeon didn’t attach those “analgesia balls" that slowly released a local straight into the joint to allow more vigorous PT for a same-day release--like a certain surgeon at Rush (who seems to have a higher rate of complications requiring revision surgeries). Good thing I was able to stay in-hospital as long as I did, and I needed inpatient PT both times due to the need to climb the stairs in my house for twice-daily trips to an outpatient PT clinic had I been released to home.
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I loved my epidural, despite having complications. I had an accelerated labour and I was so tired, and the epidural seemed like magic. I couldn't have any more, but I guess with the other two it was easier to go natural anyway.
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Sandy, you had a wild experience. For #2 son, it was sooo different. It was hot out, really hot (like 100°) and the delivery room was warm. Eventually my doctor let me have iced tea in the delivery room. Things were not progressing very fast. They did have to do an episiotomy but that was fine. I felt so much better. I'm glad I was able to go natural the 2nd time. I wasn't brave enough the first time. But the most important outcomes were my two healthy sons no matter how they arrived.
HUGS!
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Hello ladies, I saw my oncologist yesterday and was informed my markers did not match and he wanted another pathologist to look at it. Anyone ever had this experience?
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Twins, I don't know precisely what your oncologist meant by "markers." Did you ask what he meant? That's good that he's getting a second opinion whatever he is referring to, because then he will be able to tailor your treatment to your particular tumor.
HUGS!
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