Well, at least it's not going to kill me
Sep. 11th, 2007 07:18 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
thereyougothenI have Paget's disease, and also DCIS - or Ductal Carcinoma in Situ. well, I believe that the Paget's disease is the warning sign for the DCIS, so I suppose I should be glad I got the thing with some symptoms.
This post isn't friends locked, because while I'm having a truly shitty time, I've got something that is very rare, and maybe not a lot of people know about it. If you have never heard of what I'm going to describe, please take note. If any of this sounds familiar, and you are a woman, go and see your GP, if a man, please encourage any woman you know to get it seen to. I am not sure if this is one of the breast cancers that can affect men, because it's all about the milk ducts. I have no lumps. it never occurred to me to worry about anything but lumps, but breast cancer isn't just about lumps.
paget's disease represents 5% of breast cancers, and is more common (if you can call it that) in women over 50.
PLEASE DO NOT EVER IGNORE **ANYTHING** AT ALL WRONG WITH YOUR NIPPLES.
i'll put the rest of this under a cut, if you don't want to know, you dont' have to read it. further posts over the next few months may be full of too much information. i'll try and remember to put stuff like that under cuts. this will probably be the only post about it that isn't friends locked, i just want as many people as possible to hear about paget's disease and store the kniowledge away for the future.
I have chosen not to ask the interwebs too much about this, because I don't want info overload, so I'm not supplying any links. I am very lucky to live in Edinburgh where there is a very good breast clinic, and I am under the care of the head of the department.
I had a small lesion on my right nipple that first appeared over a year ago. then it went a way for a while, then it came back. it did this a few times, but over the course of this summer, it covered the whole nipple, so i went to see the GP. the GP assumed infection, but the protocol is to refer to the breast clinic. i was also given antibiotics. the irritation got better, but came back as soon as the antibiotics were finished.
at the breast clinic i had a mammogram, and then went back a few days later for a consultation. at which point they sent me for for more mammograms and an ultrasound. given that i had expected to be sent away with just some stronger antibiotics, this was all rather shocking. that day they did a nipple biopsy and i was given an appointment to come back for a lymph gland biopsy and a biopsy of some "microcalcifications" that had shown up on the mammogram.
then we went home and waited 9 days. these were about the worst 9 days of my life so far. i can't describe how i felt. Bill has gone through every step of this with me, so he's feeling about the same as me.
last friday, we went back. and were told that the biopsies had been postive for paget's and DCIS, but that at least my lymph gland was clear.
in short, it's not going to kill me. in fact, it's not even cancer...yet. the consultant described it thus: if a cell has 10 switches that need to be switched to turn into a cancerous cell, yours cells have 6 switched. so, it is slow moving (which is a relief since I ignored it for a year) and if i get it taken care of, i have a 9 out of 10 chance of never needing any further treatment.
but, i need a mastectomy. they used to call them radical mastectomies, i'm not sure of they still do. it's a bit of a sucker punch, if you have a lump you have a lumpectomy and some radiotherapy. if you don't actually have cancer....yet, you get a mastectomy. but lumps are discrete things, this is in the ducts, and ducts are all over the breast. so, it has to go.
i met the plastic surgeon today. the man is the personification of arrogance. very blond, very sure of himself, about my age, and you know, i can just about guarantee you that he drives a convertible porsche. he does, i'm sure of it. well, we didn't hang out in the car park, but i just know. however, arrogance in a surgeon is actually quite reassuring.
luckily, as it turns out, i have enough abdominal fat (well, no surprise there) that it can be used in a reconstruction. i will be having a very major operation, 8 hours long, but if it works, and it does in 95% of cases, I won't have anyting in me that isn't me. they will need to graft a vein, and use some of that excess tummy to rebuild me. if it doesn't work, and we will know within 48 hours, i will have to have an implant. i don't want an implant, so let's hope this works. the surgeon says one hasn't failed on him yet. i didn't bother to ask how many he had done...
my brother wants to know if I have "good" doctors. here in the NHS you have the doctors you have, but i am confident that I do indeed have good doctors.
i have a provisional date for surgery as 4 october and i will be in for at least a week. it may be the next week though, it seems that the surgeon does breasts on thursdays. the worst bit is that i have to go to St John's at Livingston. not the western. but i will be having vascular plastic surgery, and that all happens out at livingston.
a week. in hospital. i hope to god i can knit. or at the very least crochet. it is my right breast, so hopefully left handed crocheting won't be interfered with too much. do hospitals have wireless internet? a week of daytime telly. lovely. please please come and visit me if you can. you can always combine it with a visit to the outlet mall at livingston....
my parents will come over a few days before and stay for about 3 weeks. the recovery period is quite long, i won't be able to drive (abdominal surgery plus a vein taken from my groin) for 6 weeks, and i shouldn't expect to go back to work for 2 months. yep, that's the job i just started. wonderful. in my second week on the job i had two hospital appointments. now i'm off this week as well. i will go back for the next two weeks, or i'll probably go nuts.
as you might imagine, this is not something that I find easy to tell people. if you know me in person, please feel free to tell anyone else who knows me, no matter how vaguely. i'm hoping to turn up at knitting next week, or maybe the weekend after, and it'd really be easier if everyone already knew. ok? so please, talk amongst yourselves.
This post isn't friends locked, because while I'm having a truly shitty time, I've got something that is very rare, and maybe not a lot of people know about it. If you have never heard of what I'm going to describe, please take note. If any of this sounds familiar, and you are a woman, go and see your GP, if a man, please encourage any woman you know to get it seen to. I am not sure if this is one of the breast cancers that can affect men, because it's all about the milk ducts. I have no lumps. it never occurred to me to worry about anything but lumps, but breast cancer isn't just about lumps.
paget's disease represents 5% of breast cancers, and is more common (if you can call it that) in women over 50.
PLEASE DO NOT EVER IGNORE **ANYTHING** AT ALL WRONG WITH YOUR NIPPLES.
i'll put the rest of this under a cut, if you don't want to know, you dont' have to read it. further posts over the next few months may be full of too much information. i'll try and remember to put stuff like that under cuts. this will probably be the only post about it that isn't friends locked, i just want as many people as possible to hear about paget's disease and store the kniowledge away for the future.
I have chosen not to ask the interwebs too much about this, because I don't want info overload, so I'm not supplying any links. I am very lucky to live in Edinburgh where there is a very good breast clinic, and I am under the care of the head of the department.
I had a small lesion on my right nipple that first appeared over a year ago. then it went a way for a while, then it came back. it did this a few times, but over the course of this summer, it covered the whole nipple, so i went to see the GP. the GP assumed infection, but the protocol is to refer to the breast clinic. i was also given antibiotics. the irritation got better, but came back as soon as the antibiotics were finished.
at the breast clinic i had a mammogram, and then went back a few days later for a consultation. at which point they sent me for for more mammograms and an ultrasound. given that i had expected to be sent away with just some stronger antibiotics, this was all rather shocking. that day they did a nipple biopsy and i was given an appointment to come back for a lymph gland biopsy and a biopsy of some "microcalcifications" that had shown up on the mammogram.
then we went home and waited 9 days. these were about the worst 9 days of my life so far. i can't describe how i felt. Bill has gone through every step of this with me, so he's feeling about the same as me.
last friday, we went back. and were told that the biopsies had been postive for paget's and DCIS, but that at least my lymph gland was clear.
in short, it's not going to kill me. in fact, it's not even cancer...yet. the consultant described it thus: if a cell has 10 switches that need to be switched to turn into a cancerous cell, yours cells have 6 switched. so, it is slow moving (which is a relief since I ignored it for a year) and if i get it taken care of, i have a 9 out of 10 chance of never needing any further treatment.
but, i need a mastectomy. they used to call them radical mastectomies, i'm not sure of they still do. it's a bit of a sucker punch, if you have a lump you have a lumpectomy and some radiotherapy. if you don't actually have cancer....yet, you get a mastectomy. but lumps are discrete things, this is in the ducts, and ducts are all over the breast. so, it has to go.
i met the plastic surgeon today. the man is the personification of arrogance. very blond, very sure of himself, about my age, and you know, i can just about guarantee you that he drives a convertible porsche. he does, i'm sure of it. well, we didn't hang out in the car park, but i just know. however, arrogance in a surgeon is actually quite reassuring.
luckily, as it turns out, i have enough abdominal fat (well, no surprise there) that it can be used in a reconstruction. i will be having a very major operation, 8 hours long, but if it works, and it does in 95% of cases, I won't have anyting in me that isn't me. they will need to graft a vein, and use some of that excess tummy to rebuild me. if it doesn't work, and we will know within 48 hours, i will have to have an implant. i don't want an implant, so let's hope this works. the surgeon says one hasn't failed on him yet. i didn't bother to ask how many he had done...
my brother wants to know if I have "good" doctors. here in the NHS you have the doctors you have, but i am confident that I do indeed have good doctors.
i have a provisional date for surgery as 4 october and i will be in for at least a week. it may be the next week though, it seems that the surgeon does breasts on thursdays. the worst bit is that i have to go to St John's at Livingston. not the western. but i will be having vascular plastic surgery, and that all happens out at livingston.
a week. in hospital. i hope to god i can knit. or at the very least crochet. it is my right breast, so hopefully left handed crocheting won't be interfered with too much. do hospitals have wireless internet? a week of daytime telly. lovely. please please come and visit me if you can. you can always combine it with a visit to the outlet mall at livingston....
my parents will come over a few days before and stay for about 3 weeks. the recovery period is quite long, i won't be able to drive (abdominal surgery plus a vein taken from my groin) for 6 weeks, and i shouldn't expect to go back to work for 2 months. yep, that's the job i just started. wonderful. in my second week on the job i had two hospital appointments. now i'm off this week as well. i will go back for the next two weeks, or i'll probably go nuts.
as you might imagine, this is not something that I find easy to tell people. if you know me in person, please feel free to tell anyone else who knows me, no matter how vaguely. i'm hoping to turn up at knitting next week, or maybe the weekend after, and it'd really be easier if everyone already knew. ok? so please, talk amongst yourselves.
