TRIPLE POSITIVE GROUP
Comments
-
Happy New Year girls!!!
0 -
Colonoscopy over and no issues. Not again for another 10 years! Hooray!!! I explained to the nurses that they couldn't use my right arm and they were very familiar with it and put a big note on my bed on the right side, no IVs, no BP. BP cup went on my right calf which they said was fine. Then she proceeds to get ready to do the IV in my right arm and didn't see her own note. Man you have to watch them every minute. Test was at 8 and at 9, hubby and I were at breakfast.
Cami: you are amazing having that test without being put to sleep. Not me!
Happy New Year everyone!
0 -
pbrain - Lol! I fell for it! I am normally a pear but was headed toward applie-ish, so I was thankful to move back toward pear again! Only now my pear parts are lower
arlene - yay for 10 colonoscopy-free years!
0 -
Lago -- thanks that makes sense. I will build up the guage, get them in a cushy bra & take them out for a spin.
Arlene - glad you got that over with & alls well.
Happy New Year All.0 -
Arlene,
Good news about the colonoscopy! I'm do for one sometime this year but going to wait past chemo and herceptin.
SpecialK,
I'm all for enhancement, especially when going through this hell, it makes us feel better!
Lago,
Love the hair pictures through the chemo process.
Happy New Year0 -
Fluff,
That sounds familiar! heh.
Meg, it is weird that the kidney infection showed up before UTI symptoms. So this is where it gets odd.
When I went to the ER, they did a urine test right there and said
1. It was full of blood (obviously, like V-8) but not red blood cells
2. No significant white blood cells (usually present with infection)
3. No bacteria or by products of it.
But, since I was hurting, and they could touch the place on my back that was hurting (not the same place on my spine which is a separate issue).....they gave me a week of antibiotics, told me they'd "grow" the culture and to come back and see my doc today for the results.
So today I went in, and the doc said...the culture didn't grow anything. Everything that is there, is normal. There's a really good chance you don't have a kidney infection after all. So how have you responded to the antibiotics?
I told him, no difference. Some days there is visible blood, everyday pain. Period. And oh by the way, my spine is still hurting.
He told me to pee in a cup again, said maybe the first sample just didn't take, and that they were checking it for protein, microscopic blood, etc. He'd call me Weds with the results.
When I lifted my brow at that, he BLUSHED (because he didn't call me last time!) and "promised."
The plan is basically this:
1. If anything is found (protein, blood, etc) I am referred to a urologist
2. If nothing is found. We'll just let it slide. Assume it was an infection and the antibiotics took care of it.
So I asked about the pain in the kidney...and he basically said, if the pee comes back clean, it's not the kidney.
It is amazing to me how many hoops military docs will jump through (or at least the ones I deal with) to keep from giving me a scan, an MRI, whatever.
Seems to me they could rule out quite a few things with a simple scan, but what do I know.
I'll go through the general doc, the urologist, and end up back down at the cancer center.
God forbid we actually START there.
As a side note, and FYI. Carboplatin is hell on the kidneys. He told me that today. It's been so long since I read the SEs that I didn't remember that. Sometimes the damage is immediate, during chemo, but more often than not (according to him) it's further out....after tx ends.
Greeeeeeat.
Hope to get this sorted soon though. (But not holding my BREAF!)
HAPPY NEW YEAR LADIES!!!
0 -
Arlene, good news on the colonoscopy!
I remember my doctor told me he will see me in 5 years for another colonoscopy although he said he did not see anything. Did I remember wrong and it should be 10 years?
0 -
meglove - some docs like 5 years, some like 10 - kind of like some docs like AC-TH, and some like TCH!
0 -
Special K, that is one way to look at it...us apple bodies have farther to drop ;-)
Happy New Year everyone, wishing every single one of you a fantastic, healthy and fun 2013!
0 -
Colonoscopy:Typically if you have a direct relative (parent, child or sibling) that had colon cancer you may get checked every 5 years. If they had to remove a suspicious polyp at your last colonoscopy then it's every 5 years. There are a few other reasons too (like had colon cancer before) that would make it every 10 years. But if you have average risk it's every 10.
There are people that get screened to often. My gastroentinologist said no reason for me to have it in 5 years even though my maternal grandmother died of colon cancer, both my parents have had suspicious polyps removed. I think if you are BRCA+ then that might be another risk factor but not just breast cancer.
0 -
Just wanted to wish all a very Happy New Year! Better 2013, everyone! AND Much Love.
0 -
TonLee: Is there any way you can go to a non-military doctor for a second opinion? Seems like you are getting the run around and it just isn't right! I hate to ask but is there anyway you could spring for the scan. I know when I got my diagnosis and my oncologist ordered a PET scan, my insurance said no and my husband said, we will just pay for it because that is insane but the oncologist felt comfortable doing CT scans of everything.
SpecialK: Don't you use military too?
Sorry, I just don't understand them not doing what is necessary.
I'm having a quiet evening at home and nurse today said I could have a glass of champagne too.
HAPPY NEW YEAR AGAIN EVERYONE! 2013 will be a great year!
0 -
Happy New Year to all of you wonderful ladies! Here's to a wonderful 2013 full of health and happiness... no matter what fruit or vegetable you most resemble. (I've always been bananas, myself.
)0 -
TonLee - kidney stones?
0 -
arlene - yes, I do use the military for my primary care, and some imaging - I had mammo/ultrasound/bone density/echocardiograms done on base. The advantage I have over tonlee is that the base near me has a clinic only and they are not equipped to do much of anything, they don't even have an emergency room, so everything is farmed out to civilians. I am fortunate in that Moffitt is right down the street from me, so I have access to super-specialized civilian care for all things relating to cancer. I have been fortunate also to have excellent people in the referral department (insurance authorization) and have had more than a few stat referrals for unusual things that have cropped up. Tonlee is near a much larger military health facility, with specialists, so they will force much of her care to be there. I must say they sound like a bunch of weenies at her hospital! It has to be totally frustrating!
0 -
I will pray that TonLee gets her scan. Can't hurt!
To all Happy New Year!0 -
Tonlee....kidney stones is what I as wondering also. For years I had hematuria, or microscopic blood in the urine. When they did an X-ray to rule out reasons they found the kidney stone. I also have a small cyst in there that the urologist says is completely common.
I think I would have that pain become intolerable, so you can get those scans. My PS would like an MRI every couple of years to check the implants for leakage, but insurance probably won't pay. I am already trying to figure out how to make scar tissue become a reaso. To schenck to make sure it isn't something serious. I have a year to figure that out though, lol.
Happy New Year! May 2013 bring everyone another year with NED!0 -
Happy New Year, everyone.
I don't know how I would have dealt with all this over the past few months without all of you on this thread. This is the thread where I made my first BCO post on the day when I found out I was a triple positive.
I wish each and every one of you health, NED and happiness in 2013.
----
P.S. I got a call today from the MO's office. One of his nurse's said "the doctor wanted me to let you know your PET Scan was okay."
I hope okay really means okay (I've become so skittish since diagnosis that I don't even know how to handle what appears to be good news).
0 -
LeeA your scan is Okay… that is a good report
0 -
LeeA, a lot of doctors' offices answer that way. Okay means they saw nothing that looked like cancer to them. That is the best answer they give, they never give guarantees. Well mine actually told me I'm going to live to be over 80, (I was 47 at the time) and had stage 3, grade 3 BC. And I really liked it and at the time I knew she was just trying to give me a positive outlook, but I'd rather hear that than whatever my statistical chances are. But most doctors only ever give you negative assurances, they say we don't see any evidence of cancer, not your cancer is gone. Trust me, that is the best answer that individual gives anyone. Good news!
0 -
Arlene,
SpecialK has the type insurance I have, but it stipulates that if you live within so many miles of a military facility that you MUST use it first, and only THEY can authorize tx off post. I live 5 minutes from a facility, SpecialK doesn't, so she can see civilians for the most part.
I actually have gone to civilian providers (non-network) and just paid out of pocket a couple times already with this cancer thing and thyroid as well. Yes, I could pay for the scan, and if they give me the traditional "this bleeding is normal for you" speech (used when they have no clue what is wrong and no motivation to find out) I will likely do just that.
CONSISTENT quality healthcare is impossible to maintain when you can't fire people. It is very frustrating. It's not like this is free care or something. We earned it, we continue to pay for it, yearly and with co-pays just like everyone else.
Lest someone think me ungrateful, ha, I will say it seems to run hot and cold with me. The providers are either really on top of their game, stellar practitioners, or, um....maybe practicing in the military so they don't have to carry malpractice insurance! ha!
0 -
LeeA..WOO HOO!! I think "ok" means ... no evidence anywhere else! I am so happy for you. I pray 2013 will continue bringing you ONLY good news in regards to this dx.
Fluff...I just noticed your avatar! You look beautiful! I love the dress....very classy sister!
0 -
tonlee - I do see military PCP but their other types of care are so limited, or they only have enough slots to focus on active duty military, then I go civilian. The clinic here on base is tiny, they have no oncology at all, and only one dermatologist, so I go off-base for that. I am bound to the base IF they can provide the service - I had all my echos there because they have the capability.
0 -
Fluff,
lol, I have had that pain for real. I always thought I had a high tolerance for pain....I didn't take any of the narco stuff they gave me for MX, Ooph. I did need the anti-nausea stuff on chemo though. And I actually like to feel the pain, so I know where it is, if it is changing, I believe my body is telegraphing me information with every heartbeat...and that is exactly how my back hurts, with every heartbeat.
When they ask me on a scale of 1-10 how is your pain....I just can't even imagine a 10..maybe if I had to hack off my own arm, with my teeth? That'd be pretty painful. That'd probably be a 10. lol
So I never have gone higher than like a 7, because I always think...well, it could be worse.
When I went to the ER, I bumped that up to an 8, and still same tx. So I guess that chart doesn't mean a whole lot anyway....
I'm the squeaky wheel though. I'll get'er done.
0 -
LeeA I remember asking my onc "How do we know this will work?" to see how she would answer. She gave me the right answer… "We don't know. In our case there is a 40% chance you don't need any treatment after surgery we just don't know if you are one of those 40%." yadda, yadda yadda.
That's when I knew I would get straight talk and no BS from her. Perfect for me.
0 -
SK,
Right. Our hospital is gi-normous! It's a training hospital as I'm sure you know. Which means they NEVER lack for staff....and getting an off base referral is like pulling teeth.
I have a civilian endo. He was with me for the last 8 years, and especially helpful with my dx. He was the only doc checking my Vit D and other blood levels!
Every 6 months I have to literally go to the mat with Tricare to see him. We have plenty of Endos at the base, but they don't prescribe Armor thyroid...don't even carry it in the pharmacy. So I go see them, and they end up giving me a referral off base because they can't prescribe what works so well for me.
You'd think, after 8 years, Tricare would say...ok, we see everything is the same, the base Endo still can't prescribe that medication, and just approve the referral. Saving me the month it takes to get in to the base Endo, meeting him/her, talking about Armor, in some cases arguing about it...most times they're like 27 years old and I am educating them....then they may, or may not give me the referral. If not, then I have to fight to see their boss, the patient advocate, blah blah blah before FINALLY getting the referral.
And when I gripe to TC about it they say, "We don't care about continuity of care. You get what you get."
Every 6 months I have to do this. And because it's a mobile population, usually with all new faces!
We looked at going standard, went and talked with a TC rep. She said with a "catastrophic" medical event, it's not financially smart this close to a base. She's right, after we saw the numbers, the differences, wow. Though my husband said he didn't care, we'd pay it, I'm not going to put my family in the poor house so I can buy "better" healthcare. I have healthcare that we already pay for, and in some ways paid DEARLY. Cancer stole enough from us, I won't take my family's financial future as well.
(And I don't know why, but I don't get a "cash" price with civilian docs here. I ask for it, explain the situation, but the ones I've encountered charge the same as if my insurance pays. So when I pay out of pocket, it's for the WHOLE she-bang.)
0 -
Tonlee to get "discounted" prices because your health insurance won't pay for out of base network you really need to go to private practices. If they are on a hospital staff it's tough in not impossible to get that discount.
0 -
That sucks TonLee. I didn't know that's how health insurance worked for the military. Geez. This may be a crazy idea, but I wonder if you could establish a residence somewhere else and get civilian medical care without having to pay. You know something like Hillary Clinton establishing residence in NYC so she could run for senator there. Do you have any family somewhere that might make that possible? I know that idea sounds out there. And IMHO, you are not being ungrateful at all. If it were me, I would be complaining much more. My original MO moved toAnnapolis just after I finished herceptin, and I am still upset about it. I don't know how I would handle constant new docs, but I don't think it would be well.
0 -
TonLee - How's Armor Thyroid working for you? I have several friends that are really happy with it, but when I tried it my thyroid numbers were all over the board, never could get it adjusted so that I stayed within normal range?
0 -
tonlee - sometimes I like those 27 year-olds because it is easier for me to steamroll them - I go in with the attitude of "this is what I want, and you're going to do it, right?" - maybe because it is a clinic and they can't do it there anyway, or I am old enough to be their mom and I am scaring them, lol! I have been assigned some PCP and never even met them because they rotate out to a new assignment before I need to see them. I found success in making friends with the referral management peeps - even went into the back recesses of the referral management office and sat at the computer with one seeking to get a good hcpc code to pay for LE sleeves/gauntlets. She got on the phone with the insurance department at the place I get my stuff from and we seem to have worked out a plan - I paid for my own the first time because I was advised Tricare didn't cover them at all. They do but the workable codes are unknown to the medical device place and Humana. This one person knew what to do - why did I have to hunt her down? Why is that my job? Good thing I am a bulldog....
kay g - unfortunately many military pharmacies only carry one formulation of any given drug - for instance, they will carry one generic of Femara, a one-size fits all mentality - kind of like the military in general. So, if you need something else you have to get creative! Sometimes they can write a paper prescription that you can fill off-base but this can get expensive, especially if this is a permanent need. There is a lot of re-invention of the wheel because you are not always seeing the same doc each time either... it is a problem when our individual situations are complex. With the insurance we have all outside referrals have to come though the PCP/referral office. As you can imagine, since the base near me only has a clinic, ALL of my care has needed a referral - that means one for each doc on the treatment team - BS/MO/PS, and a referral for each procedure - doctor and facility. With 8 surgeries and several different facilities, imaging, emergencies, chemo, Herceptin, etc. - and the PS is out-of-network, it has been a challenge! During my BC treatment I also needed treatment for skin cancer - different facility and different docs, more referrals - it goes on and on!
0
