$395--that's what the 30 minute "consultation" with the cardiologist cost. Unbelievable! Now I'm even more mad about the merry go round that doctors around here prefer to send cancer survivors on when they seek care.
And, more than the money, I resent the high cost of my time. That's worth something too. I have to fit any dr. appt. in around caring for my child and trying to work part time. I want one appt., actually in this case I only wanted one scan.
Instead I had to find time for two dr appts and two scans. And, to move ahead and find out what the odd feeling in my chest might actually be since it isn't my heart, my onc says I need to come in for an appt. with him!
Unbelievable.
I'll be checking out other onc options in the new week. Honestly from what I've seen, once you have cancer you inherit a part-time job keeping your healthcare and insurance working right, likely for the rest of your life. Let me stress this is non-paid and definitely not volunteer.
I'll keep you posted.
Showing posts with label breast cancer followup. Show all posts
Showing posts with label breast cancer followup. Show all posts
Sunday, January 17, 2010
Friday, January 15, 2010
Come on People Now
I saw the cardiologist, who said a muga scan gives a better left ventricle ejection fraction (lvef) number than an echocardiogram. So I needed to have one done.
I did. My number is 65, very good and where I was at before chemo. So that's all good.
Not so my love of the medical-go-round after you've had cancer. After finding out from another cancer blogger's post that the company that makes Herceptin tells you to have heart checks every six months for at least 2 years after you finish the drug, and knowing I hadn't had any followup like that and that I was having an odd feeling in my chest, I called my onc and asked for a muga scan so I could see where I was at.
The nurse called me back and got sarcastic/snippy like she has done every time I've requested a muga scan (even though they are considered standard procedure for people taking Herceptin). "And why do you think you need a muga scan?"
Lucky for her, I kept my answer brief and civil and included something about the pains I've felt in my chest. All of a sudden, things shot into panic mode and she said I should go to the emergency room.
No, but I would like the muga scan like the Herceptin people suggest so I can rule out heart issues as causing the odd feeling in my chest.
Instead, I was told to contact my gp and work through him. He ordered the echocardiogram because he said it was the best test. His nurse called a couple days later saying everything looked fine and my lvef was 48.
Hmmm, 48 is low. I told the nurse that and asked what the gp thought of the low number. She called me back and said he didn't know what to think, and that both he and the onc wanted me to see the cardiologist.
The cardiologist said muga is the best test, and yes, we're right back where I wanted to start in the first place.
I'm supposed to go for my regular onc checkup appointment at the end of this month. I'm going to get the bloodwork done in advance as per usual (and even try to get the tumor marker and the tamoxifen test added on), but I'm not sure I'll keep the onc appt.
When you live in a smallish town surrounded by smallish towns, finding a good doc is really hard. And I only know this now because I really need a fabulously good doc, or at least one that will not punt my concerns around so freely.
It seems part of my "new normal" (I hate that phrase!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!) is having to go to at least 2 doctors whenever something comes up.
It would be nice if the ones I had to see would at least WORK TOGETHER!!!!!!!
I did. My number is 65, very good and where I was at before chemo. So that's all good.
Not so my love of the medical-go-round after you've had cancer. After finding out from another cancer blogger's post that the company that makes Herceptin tells you to have heart checks every six months for at least 2 years after you finish the drug, and knowing I hadn't had any followup like that and that I was having an odd feeling in my chest, I called my onc and asked for a muga scan so I could see where I was at.
The nurse called me back and got sarcastic/snippy like she has done every time I've requested a muga scan (even though they are considered standard procedure for people taking Herceptin). "And why do you think you need a muga scan?"
Lucky for her, I kept my answer brief and civil and included something about the pains I've felt in my chest. All of a sudden, things shot into panic mode and she said I should go to the emergency room.
No, but I would like the muga scan like the Herceptin people suggest so I can rule out heart issues as causing the odd feeling in my chest.
Instead, I was told to contact my gp and work through him. He ordered the echocardiogram because he said it was the best test. His nurse called a couple days later saying everything looked fine and my lvef was 48.
Hmmm, 48 is low. I told the nurse that and asked what the gp thought of the low number. She called me back and said he didn't know what to think, and that both he and the onc wanted me to see the cardiologist.
The cardiologist said muga is the best test, and yes, we're right back where I wanted to start in the first place.
I'm supposed to go for my regular onc checkup appointment at the end of this month. I'm going to get the bloodwork done in advance as per usual (and even try to get the tumor marker and the tamoxifen test added on), but I'm not sure I'll keep the onc appt.
When you live in a smallish town surrounded by smallish towns, finding a good doc is really hard. And I only know this now because I really need a fabulously good doc, or at least one that will not punt my concerns around so freely.
It seems part of my "new normal" (I hate that phrase!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!) is having to go to at least 2 doctors whenever something comes up.
It would be nice if the ones I had to see would at least WORK TOGETHER!!!!!!!
Sunday, January 3, 2010
What Does Aggressive Followup Look Like?
I started asking myself and my health care providers this question around the time chemo, radiation and Herceptin treatment were drawing to a close.
It's what everyone agreed I'd need, since I had grade three, multifocal and node and Her2 neu positive IDC (invasive ductal carcinoma).
Almost two years out from my 14 months of treatment, I've found it to mean bloodwork before my once every four month appointments with an onc. I feel it's more least we can do than aggressive.
Everyone has their own comfort level with scans, etc. after cancer treatment. I don't like them because of the cost, time and health risks involved, and I'd love a better way to know where one stands cancer-wise. But since there is no better way, and because job #1 for me is to stay healthy for my son, I prefer to use scans, checks and whatever else is out there to followup on an aggressive cancer.
I'm convinced that if my cancer comes back, it will be like a house afire. I don't want to catch something too late. That would suck so much.
Anyway, back to my point. I guess I've been slowly shaping my own aggressive followup plan. I know it's not right for everyone and some people might disagree with my style, but my concern is what works for me. I encourage all other cancer patients to find what works for them.
1. A mammogram couldn't detect my two 2.5 cm. tumors. Mammograms don't work as well on young women like me, because we often have dense breast tissue that a mammogram doesn't "read" well. So my annual check involves a mammogram (because my insurance makes me start there) and then an MRI on both breasts.
2. As part of my treatment, I'm taking tamoxifen for five years. Tamoxifen raises one's chances of developing uterine cancer. So I'm getting a yearly endometrial biopsy for at least the next couple years.
3. One of my chemo drugs is known to affect heart function. So is the Herceptin I took for a year. I'm getting yearly muga scans to keep tabs on my heart function that's dropped from the 60s to 48 after treatment and never gone back up.
4. I'm going to request the test to see if I'm an excellent, average or poor metabolizer of tamoxifen. This is said to be especially important for Her2 positive people because it can actually fuel a recurrence if you're a poor metabolizer. My insurance doesn't pay for this and my onc is only mildly supportive, but I think checking this out falls in the realm of aggressive followup.
5. I'm also going to ask that we do CA 27.29, the breast cancer tumor marker test, with my bloodwork from now on. My cancer didn't affect this marker, but there's no guarantee a recurrence or new cancer wouldn't act differently. I think aggressive means we follow the marker and then rule things out if it goes up dramatically.
6. That's it for now.
I'll keep you posted.
It's what everyone agreed I'd need, since I had grade three, multifocal and node and Her2 neu positive IDC (invasive ductal carcinoma).
Almost two years out from my 14 months of treatment, I've found it to mean bloodwork before my once every four month appointments with an onc. I feel it's more least we can do than aggressive.
Everyone has their own comfort level with scans, etc. after cancer treatment. I don't like them because of the cost, time and health risks involved, and I'd love a better way to know where one stands cancer-wise. But since there is no better way, and because job #1 for me is to stay healthy for my son, I prefer to use scans, checks and whatever else is out there to followup on an aggressive cancer.
I'm convinced that if my cancer comes back, it will be like a house afire. I don't want to catch something too late. That would suck so much.
Anyway, back to my point. I guess I've been slowly shaping my own aggressive followup plan. I know it's not right for everyone and some people might disagree with my style, but my concern is what works for me. I encourage all other cancer patients to find what works for them.
1. A mammogram couldn't detect my two 2.5 cm. tumors. Mammograms don't work as well on young women like me, because we often have dense breast tissue that a mammogram doesn't "read" well. So my annual check involves a mammogram (because my insurance makes me start there) and then an MRI on both breasts.
2. As part of my treatment, I'm taking tamoxifen for five years. Tamoxifen raises one's chances of developing uterine cancer. So I'm getting a yearly endometrial biopsy for at least the next couple years.
3. One of my chemo drugs is known to affect heart function. So is the Herceptin I took for a year. I'm getting yearly muga scans to keep tabs on my heart function that's dropped from the 60s to 48 after treatment and never gone back up.
4. I'm going to request the test to see if I'm an excellent, average or poor metabolizer of tamoxifen. This is said to be especially important for Her2 positive people because it can actually fuel a recurrence if you're a poor metabolizer. My insurance doesn't pay for this and my onc is only mildly supportive, but I think checking this out falls in the realm of aggressive followup.
5. I'm also going to ask that we do CA 27.29, the breast cancer tumor marker test, with my bloodwork from now on. My cancer didn't affect this marker, but there's no guarantee a recurrence or new cancer wouldn't act differently. I think aggressive means we follow the marker and then rule things out if it goes up dramatically.
6. That's it for now.
I'll keep you posted.
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