Last Sunday (10/11/09) we participated in the Susan G Komen's Race for the cure event. Only a 3 mile walk, it was a really nice day, and a huge amount of people there. We did the race when we lived in Tampa area, when they have it in downtown St. Pete. We never realize that we'd participate as a cancer survivor. It's been quite a year, from when we find the lump after Christmas 08, til now, there was a lot of ups and downs. We can sort of breathe a sigh of relief, but from talking with other survivors, the fight continues on.
I haven't talked about our experience much on this blog, but here's a very quick summary, I believe the first item is the most important.
As I have mentioned, we found the lump end of December last year, the kicker is, and something I am still very mad about, is that she had a mammogram in November, plus office examination, so the both missed it! It's one thing that the lump was small, but her lump was 3 cm! And based on the comment from the specialist at Mayo, it takes about 3 years to grow into that size. So it's not like in a month, this thing multiplied in size. We ended up detected ourselves. I am very disappointed with the office visit and the mammogram result.
I am not saying don't go to your doctors, and have annual mammogram, but please, do not only rely on that, you should mark your calendar, and perform a monthly self examination for added security. We could've easily let this thing grow another year, if we didn't catch it ourselves! After we found out my wife had breast cancer, we checked online, and found many similar stories, I'd have never thought that mammogram is not a catch all procedure before.
Don't be afraid to do your research, but be prepared to get overhelmed with the info you can find. We both have medical background, but it was still very difficult to track and understand all the info. It doesn't help that BC is not a simple, one type of cancer, there are different types, and treatment can be different based on type of BC.
Don't be afraid to seek out second or third opinion! It's your life, and it's your body, don't be shy about it. We were very naive from the get go. After we found the lump, we had a consult with radiologist for another procedure, that's when they determine it's a tumor, but needed a biopsy to determine if it's malignant or benign. We talked to a local surgeon, and for some reason, he said "don't worry, I am very positive it's not cancer, it's fibroadenoma, which are non cancerous, and said that he will just remove it, instead of doing fine needle aspiration biopsy as recommended by the radiologist. Which of course, turned out to be totally wrong. When we asked him why he thought it was not cancer, he mumbled a bit, then said this is the second time he had this. We were both shocked by his response, I am sure anyone who made one mistake like that, should learn kept his mouth shut, and let pathologist determine what type of tumor it is. When we told the surgeon finally selected about our experience, her response was: If he thought it was fibroadenoma, there'd be no reason to remove it in the first place, since fibroadenoma is non-cancerous, so the proper step should've been the apiration of tissue, examine by pathology, and then make final determination of next step.
If you do seek out second or third opinions, dont' be surprised to see/hear that the opinions can be very different from one physician to the next, and don't be surprised that physicians will not tell you what you should do (I think this is due to malpractice law suits), they will lay out the options, you have to make a final decision. Also, there will be a lot of medical terminology thrown around, if you don't understand something, ask what they mean.
Seek out help with support group. When we first found out of her cancer, we were literally like zombies. We got the pathology report, and that's it! We didn't get any guidance of what to do next. We weren't sure who's we need to see on what to do next - is it the radiologist, surgeon, OB doctor? Luckily, someone from the surgeon's office told us we should contact the cancer center, we did, and we see a nurse at the cancer center, and she was able to give us a ton of information, what to do next. Because she's a BC survivor herself, she was able to tell us her own experience, and we found it to be very helpful. We were really impressed with the support and help we received from the support group, they were all wonderful people, and we were so fortunate to have met them. With all the information/research we did, it was really nice to get a face time with someone who can explain/interpret to us what we read.
We feel fortunate that Mayo Clinic has locations in Phoenix. It's a 2 hour+ drive from Flagstaff, but it was the comfort level that we needed after our initial experience, and it's a good thing that our MAYO takes our insurance. We never felt rushed during our visits with the doctors there, which is another issue I've had before with doctor's visits in the past. We spent well over an hour during our first consults, which was really helpful for us, and also sealed the deal to go with MAYO for her treatment.
I was fortunate that my company let me shift my hours around so I can work extra hours 4 days week, so I don't have to take extra time off for the commute we had to make for the multiple procedures my wife had to endure.
I'd also like to thank American Cancer Society, they were able to arrange free hotel stays, when we had to stay overnight, to receive the white cell booster shot the next day during chemo.
BTW, this white cell booster shot, it's called Neulasta, it is $9500 a shot! She had to have 4 shots during her chemo, we're lucky to have good coverage, but I sincerely wish that everyone can have access to good/affordable health insurance. Things have to change in our health care and insurance industry to make it affordable for all people. Getting sick should not bankrupt you.
I haven't talked about our experience much on this blog, but here's a very quick summary, I believe the first item is the most important.
As I have mentioned, we found the lump end of December last year, the kicker is, and something I am still very mad about, is that she had a mammogram in November, plus office examination, so the both missed it! It's one thing that the lump was small, but her lump was 3 cm! And based on the comment from the specialist at Mayo, it takes about 3 years to grow into that size. So it's not like in a month, this thing multiplied in size. We ended up detected ourselves. I am very disappointed with the office visit and the mammogram result.
I am not saying don't go to your doctors, and have annual mammogram, but please, do not only rely on that, you should mark your calendar, and perform a monthly self examination for added security. We could've easily let this thing grow another year, if we didn't catch it ourselves! After we found out my wife had breast cancer, we checked online, and found many similar stories, I'd have never thought that mammogram is not a catch all procedure before.
Don't be afraid to do your research, but be prepared to get overhelmed with the info you can find. We both have medical background, but it was still very difficult to track and understand all the info. It doesn't help that BC is not a simple, one type of cancer, there are different types, and treatment can be different based on type of BC.
Don't be afraid to seek out second or third opinion! It's your life, and it's your body, don't be shy about it. We were very naive from the get go. After we found the lump, we had a consult with radiologist for another procedure, that's when they determine it's a tumor, but needed a biopsy to determine if it's malignant or benign. We talked to a local surgeon, and for some reason, he said "don't worry, I am very positive it's not cancer, it's fibroadenoma, which are non cancerous, and said that he will just remove it, instead of doing fine needle aspiration biopsy as recommended by the radiologist. Which of course, turned out to be totally wrong. When we asked him why he thought it was not cancer, he mumbled a bit, then said this is the second time he had this. We were both shocked by his response, I am sure anyone who made one mistake like that, should learn kept his mouth shut, and let pathologist determine what type of tumor it is. When we told the surgeon finally selected about our experience, her response was: If he thought it was fibroadenoma, there'd be no reason to remove it in the first place, since fibroadenoma is non-cancerous, so the proper step should've been the apiration of tissue, examine by pathology, and then make final determination of next step.
If you do seek out second or third opinions, dont' be surprised to see/hear that the opinions can be very different from one physician to the next, and don't be surprised that physicians will not tell you what you should do (I think this is due to malpractice law suits), they will lay out the options, you have to make a final decision. Also, there will be a lot of medical terminology thrown around, if you don't understand something, ask what they mean.
Seek out help with support group. When we first found out of her cancer, we were literally like zombies. We got the pathology report, and that's it! We didn't get any guidance of what to do next. We weren't sure who's we need to see on what to do next - is it the radiologist, surgeon, OB doctor? Luckily, someone from the surgeon's office told us we should contact the cancer center, we did, and we see a nurse at the cancer center, and she was able to give us a ton of information, what to do next. Because she's a BC survivor herself, she was able to tell us her own experience, and we found it to be very helpful. We were really impressed with the support and help we received from the support group, they were all wonderful people, and we were so fortunate to have met them. With all the information/research we did, it was really nice to get a face time with someone who can explain/interpret to us what we read.
We feel fortunate that Mayo Clinic has locations in Phoenix. It's a 2 hour+ drive from Flagstaff, but it was the comfort level that we needed after our initial experience, and it's a good thing that our MAYO takes our insurance. We never felt rushed during our visits with the doctors there, which is another issue I've had before with doctor's visits in the past. We spent well over an hour during our first consults, which was really helpful for us, and also sealed the deal to go with MAYO for her treatment.
I was fortunate that my company let me shift my hours around so I can work extra hours 4 days week, so I don't have to take extra time off for the commute we had to make for the multiple procedures my wife had to endure.
I'd also like to thank American Cancer Society, they were able to arrange free hotel stays, when we had to stay overnight, to receive the white cell booster shot the next day during chemo.
BTW, this white cell booster shot, it's called Neulasta, it is $9500 a shot! She had to have 4 shots during her chemo, we're lucky to have good coverage, but I sincerely wish that everyone can have access to good/affordable health insurance. Things have to change in our health care and insurance industry to make it affordable for all people. Getting sick should not bankrupt you.
1 comment:
this is really nice. great run!
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