Lumpectomy Lounge....let's talk!
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kayfry—I'm afraid my problem is that I don't have a team. My Medicare Advantage plan is only statewide and after I signed up I discovered that no doctors I knew of took its insurance. But I wasn't worried because I wasn't expecting to get sick. Joke was on me, I guess. My PCP suited me and that's all I was concerned about. The MO that my BS recommended doesn't take the insurance, and the MO I did see said she was having trouble understanding the BS's notes! She did not even have my surgical pathology report. Fortunately I had a copy with me.
By the way, just to clarify, I knew I was going to have rads after the lx. What I didn't know was a) if I'd had an mx, which I would have been quite willing to do, I might not have needed rads, and b) that I was going to need chemo in addition to the rads despite the fact that my nodes were fine.
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Peggy—I've ordered Susan Love's book and will have it Friday.
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Thanks for replies. I am new to this and all the abbreviations are confusing, I am guessing at what they stand for. Can you help me out here. My right side surgery is looking good and not painful, lymph nodes were negative so I am hopeful again.But the nipple on the left side is very swollen after a year. My surgeon says it is from radiation and will not comment further. Any info welcome
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Surprised, glad you ordered it. Even outdated, it is too valuable a resource (IMHO) to not have.
Greenerfields, scroll up towards the top of the page. On the left is a blue box that says HELP WITH ABBREVIATIONS - that will help tons! it IS confusing (Took me a awhile to find that little helpful box
). Also, it is extremely helpful if you make your diagnosis and treatments PUBLIC on your profile. We all refer to them when answering concerns. I think we tend to answer questions where the profile rather resembles our own. I am surprised that your nipple is still swollen. Have you discussed this with any of your doctors? I think you should. At least to find out things are normal. HUGS!!!
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Surprised, it is just terrible that insurance bureaucracy and rules have been making it so difficult for you get coordinated medical care that you can understand and have confidence in! It's especially disturbing to me (age 64, will be 65 in June) that it's Medicare regulations at the bottom of your problems—because I'm already a bit frustrated with my first efforts to sign up for Medicare! I guess my back story is similar to yours, except that I was "surprised at 64." Had had health insurance through my husband's employer at the time which was refused by all my local health care providers, so basically just let routine health care slide for several years—at least 2. Husband retired & went on Medicare, I went on the health care exchange for my state and purchased an individual policy that would be accepted locally, and set about catching up. This was in November. I knew I'd only have the policy until I reached 65 in June, since Medicare would be a lot less expensive than the private insurance. But I didn't expect to be sick, either. Never had been, why would I be? I might have chosen a different policy if I'd known I was about to be diagnosed with a high-grade DCIS and enter the world of BC treatment. At the same time, I'm so glad I didn't wait until I WAS 65 to be diagnosed, since maybe by then I would have had invasive cancer and bigger problems. Having paid 2 calendar-years' worth of insurance deductible, and close to the out-of-pocket maximum for this policy I have, thanks to BC, I'm now eligible to sign up for Medicare so it will start June 1. Except I haven't been successful yet, and the hurdles I've been having just to get enrolled are not what I was expecting. Grrrrr.
A Medicare Advantage plan that is only good in my state of residence would not work for me. I live in PA near the Maryland border, and my BC treatment is at Johns Hopkins in Baltimore. So that's another pitfall to put on my list, once I finally can get a chance to talk with someone about enrolling in Medicare!
I really hate that you're getting this kind of runaround and having to stress about these decisions instead of focusing on your treatment and getting answers to your reasonable questions in a timely manner. Does your hospital have a nurse navigator or someone like that to help coordinate your care? Can you talk with your BS about the problems you're having with the MO? I meant that I was surprised your options hadn't been presented to you, such that you could opt for lx + rads, OR mx and most likely no rads. And I truly don't understand why it hasn't been made clear to you why you would need chemo, since your nodes were clear. You deserve to know why such a huge step is necessary for your treatment! Also, I'm wondering what prompted the MRI that discovered the second tumor? Maybe it's an individual thing, but my BS told me he often finds the MRI confuses the issue more than helps. I'm not sure if that was only with regard to DCIS, though. You do have a confusing mess right now, and I really hope you can pull it all together. I would definitely go back to the BS, since he just suddenly sprang the whole chemo thing on you, for more explanation of why he feels it necessary.
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Kay, make sure you check out MediGap plans. I have BlueCare Network (part of Blue Cross) and as near as I can tell it works everywhere. it is NOT a Medicare Advantage plan. For me it's about $200/month. And worth every penny. I think it's an F plan. I also have to purchase prescription coverage which I get from AARP. My former boss has a plan from Walmart that is very inexpensive for prescriptions. There should be no hassle signing up for Medicare itself. For everything else, very likely. Maybe a trip to the Social Security office is indicated. Then call several insurance companies. Good luck!
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kayfry - Your state should have a free program of trained volunteers that can advise you of what is available for Medicare and to work with you. They also have information on Medigap plans and really know the ins and outs. They do not make the choices but have the information. I had trained to be one in my state. The contact info is below. Hope this helps you. My mother in Indiana had found her volunteers there priceless in wading through Medicare bills and follow up. Hopefully they can make your path easier.
Pennsylvania SHIP Website:www.portal.state.pa.us/portal/server.pt?open=514&objID=616587&mode=2
Phone: 800-783-7067
Program Name: Apprise Health Insurance Counseling Program
About: Apprise Health Insurance Counseling Program is a free health insurance counseling program designed to help older Pennsylvanians with Medicare. Counselors are specially trained volunteers who can answer your questions about Medicare and provide you with objective, easy-to-understand information about Medicare, Medicare Supplemental Insurance, Medicaid, and Long-Term Care Insurance. All services are free and confidential. You can also find Counseling events around the State.0 -
rekidal....I agree smoking is not good for anyone, but I never smoked and got BC.
surprisedat65....I had high grade and an intermediate oncotype (24); chemo was not recommended for me. It's amazing how every case is different and how every doc has a different opinion. I think all factors have to be considered. It's like a jig saw puzzle.
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Peggy, thanks. My private BC/BS policy is costing me over $500 a month, with over $6,000 max out-of-pocket I have to pay (pretty much there now!) before they cover everything. So I know that Medicare is going to be a better deal, and when you exhorted me to sign up now—:)—I got right on it. Trouble is, with all the commuting to rads and the rest of life, I seem to have no time at all these days, and my local SS office is swamped and has weird, limited hours. For example, this afternoon after I got home from rads, I was going to try calling again to get all this set in motion, only to find that the office closes at noon on Wednesdays. Originally I thought I could sign up for Medicare part A, at least, online. It only takes 10 minutes, says the website. But I got partway through the application and was informed that I didn't "qualify" in some particular way. It was very hard, long wait times, to finally be able to even schedule a call-back for an hour later, waited by the phone, got someone who couldn't seem to really understand what I was trying to do, told me I didn't have enough income on record to qualify—which was news to me. Finally I had to make an appointment for a phone "meeting," only it turns out that that appointment will conflict with my rads. So I have to change it, but can't get anyone on the phone to even do that, and then I got a letter confirming that upcoming phone appt., but suggesting I go online to apply there instead! And then I got a letter telling me I was ineligible for Social Security payments, which I was never applying for in the first place, and which was very clear from the get-go. Grrr. I will try to call again tomorrow, or maybe Friday. I know from my husband's experience that if you go in to the local SS office, you can't make an appointment, just have to take a number and wait, and it can be hours. I just don't have that time these days.
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gypsyjo, thank you! This is wonderful information. I knew there are "navigators" to help with getting insurance through the ACA, but didn't know there were similar folks to help navigate Medicare. I will definitely try this.
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Kay, what you pay now for Blue Cross has absolutely no relationship to what you will pay for a supplemental plan from them. Remember, Medicare Parts A & B cover quite a bit and the supplemental plan takes up the rest. Some plans do have deductibles. Mine has NONE! I have not paid out a cent in 4-1/2 years except for Rx copays. Worth the $200/month (plus Part B which is $100). You should wind up paying less than you are now for much much better coverage. You HAVE to go now to to the SS office. Make the time! It is vital.
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I'll try, Peggy. But first I think I'll try calling this number that gypsyjo just gave me, and see if that helps cut through some of the red tape. I know, my husband has Medicare and a Medicare Advantage plan, and it's way less money than what I'm paying (I mean, way less). But I'm not sure he has the best plan he could have. We are both rather clueless on this next phase of life, I guess.
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Kay, I was clueless too. We had a great salesman at Blue Cross who helped us immensely. Tell them you want the plan where you don't have any out of pocket expenses. Do call the number GypsyJo gave you. But you have to get it done NOW so it is in effect for JUNE!!! Do not dilly dally around, Kay! This is your big sister telling you what to do!!!!
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Hi, Kay--Both my brother-in-law and a retired physician friend and his wife are very satisfied with the cost of the AARP supplemental insurance/medigap policy they bought into, so I suggest looking into that one (by United Health Care), even if you aren't a member (which doesn't cost much and makes rates better). If David's university weren't providing a supplemental package from Blue Cross for retirees, we'd most likely be on the UHC/AARP program too. Trudi
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My mom also has the AARP policy from United Health Care. It has been great with all her chronic diseases. She has end stage parkinsons, COPD, advanced arthritis and a few other things. They have covered just about everything except for a few of her meds. Pay particular attention to the meds on Part D
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Nash I'll give yoga a try. I think my daughter actually has a yoga program and I'm sure she will want to do it with me.Peggy, I wish he could do all of the insurance stuff. He has no patience and I would probably end up banned from hospitals and lose my insurance.
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Hi, Trudi. I have already joined AARP after your recommendation, and spent some time at the website looking at various plans. Now, with also your rec, gypsyjo, I am very likely to go with one of these plans. So thank you! It turns out we can learn more than just about BC around here
But my first problem is just to get signed up for Medicare . . . which I hope to accomplish soon.0 -
Way to go, Kay! And yes, we learn a whole lot here above and beyond BC. What a great group!
Rekidal, Good luck with DH! Remind him that you do love him and he loves you. Have a nice AW moment
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Rekidal, committing to quitting smoking is harder than committing to Chemo. Please try yoga, acupuncture, and/or hypnosis. At least you will feel more relaxed as you sneak behind the barn for that smoke ;0)
I also think you and DS should have a lovely girls weekend away. The stresses you are under are not healthy. My favorite thing is to ride an Amtrak train...anywhere...just to sleep between ironed sheets while being gently rocked like a baby. A roomette seats two and at night converts to two bunk beds; perfect for you and Sis.
While your DH's attitude is inexcusable, I think he is just terrified about what you are going though and wants to control a situation that he can't. I agree you should give him the insurance company's phone number and hand him all the bills. (At the beginning of my BC journey, I put all monthly bills on autopay. It really lowered my stress level. Now I only need to write a check for the occasional non-monthly bill.)
Best wishes and please put yourself first right now.
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Pontiac Peggy, I feel you are the leader of the pack! A compliment. Thank you for your reply. This site is very comforting.
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I agree Pontiac Peggy. Many, many thanks for your rapid and wise replies!
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Hi, I'm new so I hope it's OK to jump right in with a question!
I had a lumpectomy 3 weeks ago. My lump was on the underside of my breast and the incision is about 1.5 inches below the outer rim of my areola. In the last couple of days I have felt like it was safe to gently press the area to find out what it feels like - it's making me nervous even now not being able to do breast exams! So then yesterday I noticed that the lower half of my areola had reddened areas, almost like a hickey. Of course I am freaking out wondering what in the world I have done in there. Is this worth calling the doctor, do you think? It's not hot or painful at all, just red.
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You guys are far too kind. But, since I'm feeling quite greedy, I'll accept the lovely compliments and bask in them. Thank you. Let me know if I ever stray from that path. It seems all too easy to get negative when things have gone south. I'm just glad you've found something worthwhile in my comments. (Feeling very loved
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Molly, I suspect you just have a hematoma/bruising there. I was black and blue around my nipple for several months. I have no clue why it just cropped up. Do ask your BS or whomever you see next about it. If it hurts or feels feverish, do get right in and have it looked at. You haven't done a thing wrong. BTW, I think I would wait another month before doing self-exams. Or check with your BS. Everything is still trying to settle back in to its new normal. My Lx was in the same spot on the incision was perpendicular from right below the nipple down. As always, when you're worried, call a doc
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Well I saw the BS today. He still doesn't like how my breast looks and decided to do a skin punch biopsy to rule out IBC. So here I go on the waiting merry-go-round again. He did say that he doesn't think it is IBC but he wants to make sure he rules it out sooner rather than later. I'm going to hold onto that hope as I go into the weekend.
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Just got home from my 3 month check up...All good!!! Now for a cup of tea and some dark chocolate.
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Jeanelle, fingers and toes crossed!
Nash, YEAH!!!!
HUGS!!!
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Sweet, I have a very strong feeling I will end up sneaking a few. Lol. I agree with Peggy that it is just too stressful right now to stop. I had wanted to go cold turkey as I have in the past, but I think weaning off might work better this time.0 -
Rekidal, good luck whichever way you go. It's hard. I think SweetHope is right about your DH. He's scared shitless. When I had a surgical biopsy done on my "good" breast 13 years ago, while waiting for the results, my DH would look at me like I was dying. He was so frightened. Not helpful but understandable. This time around he was unwell himself so that wasn't as much of a problem. HUGS!
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Hi Peggy, I would like to think that is the reason. Unfortunately, he has become very selfish over the years. He doesn't mind spending money, if he spends it on what he wants. He wanted me to travel approx. 1 - 1 1/2 hours each way for treatment, when my surgeon told me that the breast center 20 minutes away from my home is excellent. The reason is because I would only have to pay a $75 co-pay for the CT scan and now it will cost $500. I just shook my head and scheduled my consult at the hospital closest to where I live.
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