CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Thanks, Sandy. The gastroenterologist did recommend I have a colonoscopy just to be on the safe side. He said it was not an emergency though, so I'm waiting to schedule it until after I get some of these other appointments out of the way. The dermatologist was not too worried about the spot on my forehead. She thought of three benign things it might be, and said that it didn't look like skin cancer. She said that there wasn't a need to remove it. I had it removed anyway, partly for peace of mind, and partly because I think the tiny scar will look better than the spot did. Certainly less distracting.
Iris, I'm glad you're going to Cornell. You need some definitive answers, and they are very good there. I have a co-worker whose daughter is a professor there.
Hootowl, wow, January 30th is a long way off. Maybe the retina specialist will be able to give you some ideas or get you in somewhere sooner? My mom has a blind spot from a retinal "pucker" but I think that was not so difficult to diagnose.
I think we all know these guidelines are partly cost saving measures. I think more should be left up to the individual patient as we get older. Some people, like my Mom, are OK with not getting a mammogram at this point in their lives. With her other health issues, something else is likely to happen to her before breast cancer would. But that's a decision she should get to make. And maybe people should know what it is they have, and then make the decision about appropriate/conservative treatments, as my mother and her doctor are doing with her colon cancer.
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Gma, the ACA is available to anyone who can afford the premiums for a policy. Only the Federal subsidies (or state Medicaid) are tied to income. Do you belong to any organizations such as AARP, a union, an affinity group, hobby association, church, etc. that offer group coverage? (If you’re LDS, the church will pay for medical care).
Hootowl, if you tell the neuro-ophtho that you are already a cancer patient and need to rule in or out brain mets or an optic nerve tumor (even a benign one can cause problems), maybe he can squeeze you in sooner, assuming the retinologist first rules out a retino-vitreous problem.
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Hootowl, I agree with Sandy that you should be sure the folks handling the neuro-optho apt know your medical history; January does seem way too long to wait. Ask/tell your retinal person Monday, as well as your MO: does the neuro-optho KNOW you are a cancer patient? Is the apt actually to rule in or out brain mets? If not, what ARE they looking for? Tell your retinal specialist and the MO that you need to have an apt with someone before January because of your anxiety level and because of the concern about starting treatment if something is found. Ask your other docs to push for an earlier apt for you, or to find someone else.
Another question to ask your retinal doc: did they do a ERG (Electro-retinograph, I think it stands for)?. If not, why not? Actually, you will know if they did: the test involves hooking you up to electrodes, having you react to certain types of light, and there is a period in middle of test where you must sit in a perfectly dark room for half an hour. (then they do more with the electrodes and lights). So, if you didn't have that test, ask your retinal doc why not. For some types of retinal injuries (such as one I had) I believe it is really the best definite diagnosis, but it is time consuming, expensive, not easy to administer and invasive (in an annoying way because of the electrodes and having to sit in a dark room; it isn't painful). If retinal doc says you don't need that test because there is no scar tissue, ask him or her about the small percentage of people who don't have scar tissue. And if he or she still says they'd like you to see the neuro-optho person first before administering an ERG, tell him or her that is all the more reason why you need to see them before January, because you can't wait that long and then get referred back for yet another retinal test that could be done in the meantime!
Finally one more suggestion that may or may not help with anxiety but could be important for diagnosis: think back as to whether you had any trauma to your head at all in the past six months to a year. I mean anything: hitting it on a cabinet, falling down even if you don't think you hit your head. Be sure your retinal doc knows about any possible physical trauma no matter how seemingly insignificant.
I hope this helps. Sending hugs
Octogirl
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That's true, you don't even have to hit your head to be injured, just the whiplash effect of a fall can be enough. I got what in retrospect was probably a mild concussion that way ice skating when I was a young adult, and my head never even touched the ground.
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A million thanks for all of your replies. I had a test today called an OTC, not even sure what that is. I do have a small enlargement of the normal blind spot. Don't think I had an ERG. When I go see the retina specialist, he has my diagnosis as a breast cancer patient so he may speed things up and order tests for the neuro ophthalmologist. I called the neuro ophthalmologist's nurse today and she moved the appointment to December, but she also said she was going to give him all of my information to look at so he could fit me in even sooner if he thought necessary. This is all so distressing, and I was just getting to feel normal after the Lx, rads and AI treatments.
God bless all of you!
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Hootowl: here is more info about the OTC: http://www.aao.org/eye-health/treatments/what-is-o...
It is a fairly standard scan, I think. I had at least one, and it did *NOT* help with my diagnosis of retinal injury, because everything looked normal on it (again, because of lack of scar tissue). It also won't help if the issue is with the optic nerve since it is a retinal scan and doesn't look at the optic nerve. The difference between it and something like the ERG is that the ERG measures the actual electrical impulses coming from the rods and cones in the retina, whereas the OTC is basically a fancy photograph/image of the retina. (I think, ask your doc to confirm).
I know it is distressing, which is why I hope the docs really listen to your concerns and questions. Hugs.
Octogirl
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Praying for all who are waiting for results and more test after test.. I got lost here for a bit. I'm getting a bug I think. I have a breast ultrasound next weds. The doc ordered it after I told her I didn't want to do a mammogram. I see her Nov. 4th. Hopefully, I can just ask for the cd and results like I did with the mammogram.
As far as getting insurance next year, there is nothing left in the state of OR unless you are rich or on welfare. Of course we are in between. Other option is to get on the christian wellness plan - all you have to do is prove that you go to church. We can do that. It should cover catastrophic care anyway.
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I feel for everyone who is going through the hunt for good insurance. I am ever so grateful that my hubby got insurance through his job.
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A grrrrrr moment - radiologist refuses to do ultrasound he wants a mammogram. Not bloody likely.
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Why would he refuse?
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He feels I need a mammogram not an ultrasound. After my reconstruction/reduction the scars are massive and my breasts hurt. I don't want to squash them. I told the gal that called from my docs office just that and the dates when I had surgeries and all. She said she would let him know but wasn't too positive about thinking he would change his mind. DH said to just tell him that I would do a mammogram as soon as he did a nuttogram.. he made me smile. If that offends anyone let me know and I will take it off. I needed to smile.
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Gma, what’s sauce for the goose is sauce for the gander. Keep the post up!
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"Nuttogram" LOL. I love it.
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gma, I'm trying to get an ultrasound too. Just had a friend that had nothing show on mammogram, but something showed up on ultrasound and she had to get a biopsy. Why can't doctors just do what we are comfortable with?
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ChiSandy, Octogirl and Cubbie2015, thanks for your support and information. I'm trying to chill until Monday. Hope you will too
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Through all the stress, these little guys seem to calm me. I took this one yesterday. It's like someone coming by to tell me it's ok.
ItalyChick, the mammogram didn't show my tumor either. I found it and had a ultrasound right after the mammogram. Only because I knew it was there - I could feel it. I wasn't going to leave until they found it. I guess they just don't want to waste the US gel to do the whole breast.. I don't know but I'm sticking to my guns and I won't submit to a mammogram.
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GmaFoley.......great picture of the hummingbird, it is actually still. I think I need some lessons from you about sticking to your guns. I'm so afraid of offending someone. Hope you get your ultrasound and the results are good
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Gma, there is an ultrasound machine called an Abus that does the entire breast. I haven't done it yet cuz I'm lazy and would have to drive 70 miles to do it, but one of the women on our March 2015 Chemo forum did it and paid out of pocket, I don't think a doctor referral is required. I don't think it is very expensive either. When I first found my lump, I found a place to do an ultrasound for me out of pocket, cost $280 I think, and there the little bugger was, showed blood flow and everything Of course, the surgeon made me do a mammogram after the fact, wish I could have refused but was too panicked at that point.
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and here I am again. Just had morning bloodwork, and have to go back for an xray this afternoon. I know regular xrays are not very sensitive, but it's at least a start. My lower leg has been hurting in the middle of the bone for almost a month, especially at night (wakes me up now). Was very lucky that a doctor was willing to see me about it without an appointment yesterday, when I went in for my next-to-last Herceptin injection. Didn't mention the pain at my "all clear" one-year control last month because it wasn't that bad, had only just started, and there were so many other things to discuss with the new senior doc I was switched to. I'm guessing I don't have to describe my mental state now and for the next several days, until I get the results....
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gma, pushing is a good idea and hope all works out ok
My nuero office called a and wanted to change and delay my appt for next week, I have been really waiting for this so I complained about lot and the nurse backed off,
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Pull up a comfy chair Tessu. Welcome back. Sorry for the return trip. In your pocket while you wait on results. So stressful.
I just had my physical and forgot to discuss new issues with my Primary Care Doc. I was too busy telling him why everyone else had been fired from my medical team, and put him on notice. Hopefully they will have resolved by my onc appointment next month. I think this is why we are supposed to write things down, but I keep forgetting to do that.
Iris, good for you! You have been trying to figure this all out for too long.
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Iris, I just wrote my primary and said,
"Got a call from your office. They said that the radiologist was refusing to do the ultrasound. He wanted me to do the mammogram. I gave her the information he requested but she didn't sound too confident in changing his mind.
I just want you to know. I will refuse the mammogram. I don't need anymore pain. I hope that doesn't put me in the "uncooperative patient" category. I feel we should have the choice to do it or not. I still think I should be screened in some way."
Hoping this works.
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My son Gordy’s ex-GF (who is still a good friend) has to change shrinks—Advocate Health System pulled out of CountyCare and the new HMO to which CountyCare switched doesn’t cover her existing Advocate shrink, whom she’s seen for >5 yrs. We’re getting a bit nervous over all these insurers cheaping out and dropping their ACA plans: Golden Rule, a United subsidiary, insures both Gordy and our housekeeper. Our premium for her “silver” plan jumped 50%; and Gordy’s “bronze” plan hardly covers anything. We were gonna bite the bullet and see if we could upgrade him to a “silver” so he could see an allergist without a monster deductible & co-pay, but we don’t know how much United plans to tighten the screws. His income is low enough to qualify him for a subsidy, but he does still live with us and we claim him as a dependent (we pay his premium), so we don’t feel quite right using an option intended for poor people living on their own. We will consult our CPA, who is also a tax attorney and devoutly Catholic—we will accept his ethical advice (he’ll probably agree with us that we shouldn’t take advantage of the law simply “because we can”). His shrink suggests we just sit tight and continue to cover his deductible & co-pays, and I believe that’s the right thing to do—the increased premium for a better plan (if available) might exceed that deductible. There are fewer plans being offered these days, they’re getting costlier and stingier, so “better the devil we know”….
I’m doing a slight “happy dance,” because my pharmacy was able to get the Roxane letrozole—a buck cheaper and fewer SEs due to its having even fewer inactive ingredients than Novartis’ Femara. Humana Enhanced Part D won’t cover any letrozole, no matter the generic mfr., unless I agree to get 90 days’ worth at a time through its mail-order pharmacy—which is a crapshoot, because I can’t specify a mfr., and would be stuck with whichever generic they can get most cheaply from shipment-to-shipment, without recourse if they send me a brand known to cause more severe SEs or even contain only 75% letrozole itself. It will cover generic anastrozole wherever and however I buy it…unless I specify a particular manufacturer, in which case they will classify it too as a Tier 4 “non-preferred brand” and refuse to cover it at all. I am girding myself for changes that will probably drop coverage for all branded drugs I take that have no generic versions available—they will likely decide to cover only older generics in the same class (i.e., generic Hyzaar rather than the Benicar that gives me better BP control) or even drop coverage for not just Dexilant but pantoprazole (generic Protonix) too, alleging that the OTC PPOs (omeprazole or Lansoprazole--generic Prilosec or Prevacid) would work “adequately” and they don’t cover anything available OTC, even if in a weaker formulation that’d require me to double or even triple up and pay more for them out-of-pocket than I would for a covered non-OTC generic. Cheap bastards. Think I’ll plan a getaway weekend in Toronto….
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Tessu, sending hugs!!! Pull up a chair, have a latte with Ativan sprinkles, or whatever you need. We are with you.
Proud, Gma, RobinLK: sending hugs to all three of you and here's to being assertive managers of your own care. You all rock.
Thinking of all of the Crazies....sending love.
Octogirl
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Dropping in to say Hi ..I haven't been on here so much lately because I've been stalking the Hystersisters threads waiting for my surgery ..Molly and Robin ..thanks for steering me to their website ....Just over a week to go .
GMA lovely photo ..sorry for the issues sorting out your follow up ..
PTS ..Good for you sticking up for yourself. !!!
Oct ..Hi ..don't know if you saw my post ( ages ago ) , but I am looking forward to your visit ..
Beppy ..we all miss you so much ..I hope you are recovering well. Xx
Welcome to our new residents in Crazy Town ..you'll find lots of love and help here ..
Hi to everyone else !!
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Lucy, what is your surgery date again? Glad you are reading on HS. Great information on there. Sending big hugs to Beppy and all the crazies.
I went off the rails a bit this week and ate a bunch of sweet stuff. I don't usually do that. I am very conscious of my weight due to BC. I have to say though my treat today was phenomenal. It was a "poptart" from a coffee place that was pumpkin pie inside and the outside was real pie crust. It was AMAZING!! Okay no more bad stuff. I swear I put on 5 lbs this week.0 -
Molly, I’ve been comfort-indulgence-eating too. Gaining again. It bites. (No pun intended).
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Sandy, it does bite! 😂 It's been such a tough week and I just want to eat my way through the week. Not good.
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Lucy, looking forward to my visit also and to meeting you and in your pocket for your surgery in the meantime!
Hugs to all
Octogirl
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In the Crazy Town waiting room: spoke with the Medical Oncologist today about my experiencing shortness of breath. He is ordering more tests to check my lungs and my breathing capacity. The concern is that radiation has affected my lungs. It's never just one thing is it? It's always many. Oh well . . . .
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