CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Interesting, Octo—my MO defers to my PCP and other specialists (e.g., derm, podiatrist) on any health issues not directly related to my breast cancer. I asked about when to get vaccinations and whether to take statins & metformin, and she said “that’s something that should be handled by your primary."
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Part of the reason this approach worked for me is that I hate and have a tendency to avoid doctors, because of some weird phobias (most notably a phobia about having my blood pressure taken....which MO addressed by telling me that he didn't need to take my blood pressure on every visit or even ever, if it would keep me from coming in when needed. Bless him for that). The other issue for me was that my PCP was new: I had switched insurance companies just before my diagnosis and had to switch PCPs in the process: I literally had been to my new PCP only once, when I went to have her look at the lump that led to all the crap....(I did know her, as she is the wife of a co-worker of mine). So, I really didn't have a relationship with her anyway. But for me, I like the coordination of having the MO take the lead. I suspect he likes having the centralized control. (and that's ok with me).
And of course, I am in a rural area that is very medically underserved....where this approach may be more useful than say, in Chicago. Just as one example, my MO has his own pharmacy, with his own pharmacist and techs on staff. They do the chemo right there, but they can also prescribe whatever else is needed.
In some ways it is a minimalist approach and that really works for me as long as the big issues are addressed. But again, that is just me. I think the real lesson here is to find a doc or docs that we are comfortable with, and to try not to let worry make us crazy. It will ,of course, which is why we are here in CrazyTown!
Octogirl
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That does go a long way toward explaining the difference, Octo. My MO is in the Kellogg Cancer Center (and on its payroll, without a private practice), attached to NorthShore Evanston Hospital (which has a first-class Center for Breast Health, where I see my BS). Kellogg has its own infusion floor (mostly for chemo, but a few private rooms for the non-chemo patients whose seemingly normal appearance might unconsciously provoke resentment among the chemo patients, and to a lesser extent freak out and depress the non-chemo patients). Both it and Evanston Hospital have their own on-site pharmacies. My PCP is in a professional building a block from Presence St. Joseph Hospital (he is also on Presence’s payroll, no longer owns his practice), and his building has its own small pharmacy and on-site Quest lab. My GYN is in a freestanding NorthShore medical office center in nearby Lincolnwood (10 min. away from me), affiliated with NorthShore Skokie Hospital. I see my hand surgeon at Skokie, but he operates at NorthShore Highland Park Hospital. And I see my derm at her offices in either of NorthShore’s off-site Skokie or Vernon Hills medical office centers—whichever one can give me a more convenient appointment.
I could probably find a primary in the NorthShore system, but I really like my primary—he was my husband’s Chief Resident at UIC Medical Center when they were in training, has treated three generations of my family, and is an amazingly astute diagnostician (and a very practical guy when it comes to meds and treatments). He’s active in the American Academy of Family Practitioners and subspecializes in gerontology. (And he sends all of his patients who need specialists to NorthShore, not Presence, doctors).
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Octo ..forgot to say before that I am looking forward to your visit. ☺
Beppy ..sending love
Only 2 weeks until my hysterectomy 😷..feeling VERY nervous ..
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Beppy, sending my love ❤️❤️. In your pocket Lucy.
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Blinkie, I had that same EXACT feeling as you and was really freaked out that I had so many doctors and was worried they didn't understand the whole situation. It turned out they met each week and talked about each patient and things WERE getting coordinated. Nevertheless you do have to really make sure you don't fall through the cracks. Due to my discordant biopsy, I ended up not being diagnosed until after the lumpectomy (aka excisional biopsy). That one little hiccup led me to a second surgery to remove 6 lymph nodes (sentinel node biopsy my ass). And only when I got to the radiation oncologist was I offered the mastectomy option. Did I want to go through another year of surgeries after all that? Hell no! So I went with the radiation and now I learn I can't have a breast reduction now for at least two years if ever because of the lymphedema and the radiation would likely result in poor outcome. So DD boobs it is and the one always painful and swollen. I can never say this stuff to my friends or family. It's so nice here ... and maybe someone can avoid what happened to me. For large breasted women, if you can ask for a reduction before they go in and do the lumpectomy, it could be a good deal... less tissue I think means less chance you have a cancer factory. And everyone I've talked to really likes having smaller ones. Ironic since so many women are paying big bucks for big ones!
Update on my lousy neighbor... I went to church and came home feeling serene and peaceful. But by evening she had worked herself all up AGAIN today, came flying at my husband saying we're trying to steal her property (when it's the other way around). Her husband shooshed her. My hubby and her hubby met mano a mano and it sounds like they are going to actually have the bulkhead guy come back out and move the stairs. "Because they weren't intended for mutual use." Jackasses. All they have to do is share the freaking stairs, but hey, knock yourselves out. Frankly, the way she is, I can't see allowing the stairs to be there and her trying to control them because in 10 years you lose your property that way. Not ok. Did you know that if you can be an asshole long enough and your neighbor is nice enough you can swipe that one acre of the 300 you want, ChiSandy? (Did I get the name right?) Just start using it like your own and if they try to stop you, ignore them! It's a terrible law. I feel like people should be compensated when that happens. We lost a sliver across the street that way. Our only option was to sue the poor schmuck who sold us our house because he didn't defend it and let them put a road across it. It's called Adverse Possession.
So I guess it's best if they move the stairs. As long as this shrieking madwoman calms down and stops trying to steal my property, it's fine with me. Tomorrow I'm going to go put a couple of lawn chairs and a table on our section of the bulkhead just as a reminder. Especially if she's going to make us crawl up or use a ladder to get to that spot, I might as well load up all the heavy stuff down there while I can.
It's a good day! I'm feeling so much better.
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CHI.......my shore property was in NJ, not Pa..........a supervisor from the insurance came to my house to look at the fence and the pool when it was first put in and when it was finished........after checking he said the 6ft. fence was all I needed to do because that was the rule in the state of NJ.......he said the PRIVATE PROPERTY NO TRESPASSING.........signs around the outside of the fence was added protection even though it was not necessary..........he also said even if they should sue they would not have a case because we were abiding by NJ law, and took extra measures to protect ourselves......my husband asked him about young children who could not understand and he said they already had a case like that and the Judge threw it out saying it was negligence on the parents part, not the people they were trying to sue......I never had a problem for 28 years until the nut attached her deck to my fence.......I could have said "the hell with it, not my grandkids, but that was not going to happen.....but the lasted about 2 days......and then it was torn down......Sold the house this year so I don't have to think about it anymore..........LOL
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Adverse possession is a common-law doctrine in every state, eggroll: and the use has to be open, notorious (i.e., overt and public), uncontested by the aggrieved party, and in most states for 17 years. Legal action by the aggrieved party before the end of the 17-year period stops the clock. Why “17" years is the magic number beats me.
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And I may be back in CrazyTown again. Last night, I put on my nightgown and when my hand brushed against my left (non-bc) breast, which came up clear in a mammo late this past June, I felt a fleeting soreness. I pressed on the area and it was indeed sore—but there was nothing palpable. Just now I rechecked, and the area is bruised….with the bruise being a bit smaller than a cat’s paw (like a toe or two). I freaked out before I remembered that’s exactly where my 15-lb. perma-kitten Happy (aka Baby Huey) stood, with most of his weight on one paw, a couple of nights ago. (He likes to stand across my chest while I’m in my recliner, and either kneads my left breast or places his neck against my face so I can nuzzle it while he purrs like an outboard motor and sheds white fur over everything).
I’ll keep an eye on it—if the bruise fades or the sore spot is gone, I’ll know I’m indeed being paranoid. If it gets worse, the bruise gets bigger or I can palpate a thickening, I will call my BS posthaste. The breast is larger and more pendulous than my right (bc) breast and is quite fatty and squishable, so if there were a lump or thickening it’d be pretty easy to feel.
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Thanks to ChiSandy & octogirl & eggroll for responding to my questions. I am encouraged by what you shared. I can see my record keeping is probably good enough. I need to learn the best ways to communicate with the providers so I can not waste anyones time and still feel fully considered. Today I used the patient portal to communicate with the Medical Oncologist. Progress! Haven't heard back yet, but that seems ok, since I only wrote this afternoon. After hearing from all you I see that I need to find out how my clinic does things; I'll ask some questions about who is coordinating all the parts of my care.
I really appreciate your taking the time to help me. Crazy Town residents rock!
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sandy, your story about the bruise from your cat made me laugh and this morning that is tough,so
CT I am here
Yesterday went to see a nuerologist after my meeting the week before with surgeon who said no surgery on my spine but that I have ms. Nuero questioned why no spinal tap was done. Then he sort of answered his own question. My back is such al mess that a spinal tap could be dangerous. Docs still need to talk and I am a hot mess. Just spoke to surgeons nurse and she is sweet and will send me last report talking with 2 nuerologist, the other one suggested I go to see surgeons in Philly but now sort of confused
Too early to hit the alcohol huh.
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My surgery is scheduled for October 10th. I sure hope it helps. I am popping Tylenol 3 and Tylenol PM like crazy.
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shorfi, best wishes to you for success, we sure do not need to keep eating tylonel
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Shorfi, in your pocket for the 10th. Iris, I may start drinking for you!
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My worries about my appointment with my MO today were totally unnecessary. Everything was fine, and the best thing that came out of it is that as of today I only have to do CT Scans once a year now
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I may not really be in CrazyTown right now, more like CrazyNeighborhood. Awakened this morning by both cats yowling for food—odd, I thought, because by that time of day they’d at least gotten kibble. Called my housekeeper to find out why she neither showed up nor left a phone call—I know she’s taking tomorrow off to shuttle her DH around the V.A. hospital for some appts. he mustn’t miss, lest he have to wait months for new ones. She answered from her bed….sinus headache, nausea, vomiting. Oy.
Then I got a call from Bob—we don’t have to be at the surgi-center at 7, because that’s when his cataract surgery is scheduled. No, we have to be there at 5:45 a.m…..and it’s 20 mi. away down on the South Side. Only saving grace is that we’ll be beating the rush hour. I have a Bar Show choral rehearsal tonight down in the Loop from 6-9 pm, and I have to take the CTA train to get there lest I have to shell out $22 to park three blocks away, or that much each way for a cab or Uber—which could get stuck in rush hour traffic. So it looks like I’ll be pulling an all-nighter. (Had I known, I’d have slept till noon). And Gordy is leaving for Coachella tom’w morning—my housekeeper usually packs for him (I’m the only one who packs for myself) and still fast asleep right now. Oh, brother. And he will have to be the one locking up the house tomorrow. (Turns out that even if he’d be flying out of Midway rather than O’Hare, we couldn’t drop him off en route to the surgi-center, because the airport wouldn’t even be open).
Bob wants to go to his favorite Lithuanian joint for brunch tomorrow post-op. (He’ll have been NPO since midnight). The Lithuanian Basic 4 food groups are: potatoes, flour, lard and bacon. Uh-oh. And it’s the 10 days of penitence between Rosh Hashonah and Yom Kippur, so I’ve forgone my low-carb BLTs and all shellfish. Pray for my culinary resistance, ladies…..
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ChiSandy: I'll allow as how there's a CrazySuburb(s), if you'll let me come with you to the Lithuanian joint with you (and Bob) so that I can eat all those lovely non-kosher things which have been fried in lard and bacon fat on your behalf. Gentiles are good for something....
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well now looking for really good ms person to diagnose my messed up system
Folks telling me to go to Philly and have been looking for expert in nj or nyc, found a good place at Columbia Presbyterian and requested appt but got reject to online thing so guess that is for the morn
Gads, should have bought scotch today but I hate scotch
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Hi everyone. I've been reading along, but haven't been writing. I've been really down. I've got two more doctors appointments tomorrow - one with a gastroenterologist to discuss my colon cancer risk (based on my mother having it in her eighties and my sister having a benign polyp in the same spot) and to get a biopsy at the dermatologist. I've had something scary looking show up on my face just in the last month. Yes, I know I was just there in June. This does not look good. I've been so scared, I barely got out of bed all weekend.
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(((Cubbie))). In your pocket. You’ll probably get only a colonoscopy, and if there are no polyps won’t need a followup for 5, maybe even 10 years. As to the derm, been there, done that. Skin cancer doesn’t show up that suddenly—it’s likely some mild wart or seborrheic keratosis. You’ll get through this.
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Stuck right back in CT again. Have to finish my current writing project and then start on the current batch of work for my Adv. Comp. class. Gotta have a topic for the next paper that has two sides of an argument. Instructor has already outlawed 5 topics for the paper. so I am kind of stuck at this point
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Well ladies - We got a letter from our insurance company over the weekend - They are closing the coverage and offering us another plan... $999 a month, just for me... Don't think so....(DH will probably be out of work Dec. 1). So at this point in January, I will be without insurance. No more revisions for me.. I will have to live with the pain I guess. It's not as bad as the nerve pain I had, so I will deal. (Yes we are looking into other options, but not being on medicare yet and this insurance is the only one left in Oregon). Have I ever told you how much I hate cancer and SEs...
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Hmmmm... How about breast cancer screening? They was an article in yesterday's Clinical Oncology newsletter that suggested only biennial screening after age 50 and no screening at all after 75--reasoning that even some invasive cancers might never have manifested any symptoms, much less spread, during a woman's lifetime, that there were too many false positives, and that after age 75 it was more important to prevent cancer treatment from developing or exacerbating cardiovascular disease than it was to treat a cancer that might never have become life-threatening. Yet in the same newsletter there was another article claiming that data showed that the "watch & wait" approach to DCIS led to significantly higher recurrence rates (though not necessarily shorter overall survival).
As the late Linda Richman (played on SNL by her son-in-law Mike Myers) used to say, "tawk amongst yawselves...discuss." Two-sided enough for a paper ?
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Gma, I hate insurance companies with every fiber of my being. Can you imagine how much higher your premium would have been w/o the ACA, assuming they didn't refuse to cover you at all due to the mother-in-law of pre-existing conditions? Medicare-for-all (at least for 50+)cannot come too soon!
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Oh ChiSandy - the worst of it all is I don't qualify for ACA - I make too much money :P - they don't take into account all the medical bills you are paying off.
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Gma, I am so sorry. That really stinks. My son's caregiver's grandma had breast cancer 11 year ago in her 70's. She had lx plus rads. She's now 85 and has a recurrence in the same breast. Due to her age and the small size of the tumor she's going to have another lx. Imagine if she didn't have a mammogram in her 70's, her family would have missed out on the extra years with grandma.
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Does anyone else feel that these "guidelines" are only cost saving measures for insurance companies? Great way to masquerade it....."but it is in your best interest so you won't have to worry as much"....I call bullshit on the guidelines. Rationing healthcare no longer qualifies it as care IMHO....
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well made an appt at an ms center in nyc, part of Cornell
It sounds good and they do lots of research, appt is in a little over a week so it gives me time to get the last bit of test results. Course you know they will redo all the testing but gotta do. Rather take the trip into nyc than Philly. I need an official diagnosis it seems in order to begin treatment. Still do have a followup visit with jersey nuero this coming Monday
But on the good side, I feel pretty good and the sun is shining and I feel the urge for a lunch at the coast. Fried fresh fish, here I come!
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Hello to all. I'm in Crazy Town big time. I went to the optometrist for my blind spot. All the tests show there is nothing wrong with the retina to optic nerve. Now I have to see a retina specialist on Monday, but need to see the neuro ophthalmologist for scans. He doesn't have an appointment until January 30. I've called my MO for guidance. Any suggestions?
Hope everyone is having a better day and good luck with any scans and treatments
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GmaFoley......That is horrible about your insurance. The whole system is a confusing mess.
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