Today we met with the colorectal surgeon for news about the seriousness of my condition, and the treatment recommendation.
He told me that he wasn't actually sure how it was that we met the criteria for familial bowel screening based on what I'd told him, but it does seem to have been very lucky that I did have a colonoscopy because I could have been in a lot of trouble health wise if I'd waited until I was symptomatic. I have something called Serrated Polyposis Syndrome which isn't awesome. They do not know for sure if there is a genetic component, but suspect that there is one. Unfortunately I have a lot of polyps and they are spread widely throughout the colon. The malignant one was in my rectum.
The only realistic treatment is to have my colon completely removed, as well as a small part of my rectum. It is a big operation (and will take about half a day to complete). I will be in hospital about a week, and will not be able to do much for about six weeks. I will require a stoma for about eight weeks after the operation, at which point I will have a further operation that will join up the necessary bits and then hopefully I will not need a stoma after that. I will then have about a year of frequent toilet trips before things settle down. During the first surgery they will remove some lymph nodes that are close to where the malignant lesion was. These will be tested to see if any cancer cells travelled. The surgeon feels that there is a very small chance that this happened, perhaps 10%. If there are signs of cancer in the lymph nodes then I will be referred to oncology services. However, at this stage, it appears that I will not require oncology treatment such as chemotherapy or radiation therapy.
There are likely some lame lifestyle considerations related to having no colon, I guess I'll learn about those sometime soon.
The surgeon dryly noted that the surgery wasn't urgent, but will take place in about a month. That feels pretty urgent to us, and so we are rapidly considering what we need to do to make this happen, particularly in regards to childcare. I filled in the relevant forms for the surgery today, and will be seen
very soon for an anaesthetic pre-assessment and a lengthy chat with the
stoma nurses.
We are both feeling pretty sad today. I have focused on the worst throughout the last three weeks and actually having my colon removed was one of the least bad potential outcomes. My husband focused on the most optimistic outcomes, so hearing about the colon operation wasn't great. Regardless, the details of the condition, surgery, recovery times etc were quite sobering. We are also sad that this next year will probably see a great deal of changes for our daughters, from their perspective not so great.
I also have renewed appreciation for our health care system. There is no way that any of this would have been faster in the private system.
Tuesday 30 April 2013
Monday 29 April 2013
The first post, and not so awesome news.
Last year my aunt died of cancer. It started off as fairly advanced bowel cancer and over a couple of years worsened and spread. Parts of the cancer were tested, and in combination with two other relatives with a history of bowel cancer it was determined that my family met the criteria for regular surveillance colonoscopies, with the aim of preventing bowel cancer. Members of my family were contacted, and have all made individual decisions as to whether or not they would like to get regular colonoscopies.
Mine was a couple of weeks ago, and it took an unexpectedly long time. That was because there was a lot of polyps in there and the surgeon did his best to remove all of them. The odd polyp isn't unusual, the amount I had is. One of the lesions was ulcerated, and in the doctor's opinion, suspicious of malignancy. I was still fairly sedated, so it was a shock, but kind of a muffled shock. The week that followed was pretty horrid as we contemplated the possibility of a very nasty cancer gene syndrome, the possibility that all removed polyps were cancerous and the possibility that they were high grade.
I was told last week that there was ONE LOW GRADE lesion, and that nothing tested came back positive for the nasty genetic syndrome. While I was upset to be told that I did have cancer, it was a lot less cancer and a lot less bad than it could have been. There were no info packs or tissues in the room, just a registrar I'd never met from a service I thought I was finished with. Also, I actually thought that I was at the appointment for something else, so didn't have anyone with me, I'd focussed more on getting the kids sorted for the appointment time. Moral is: support people, every visit.
We've been well treated by the hospital - I tell you what, you know it is serious when you receive phone calls about your follow up appointments (because they are the next day). Also, people use their very serious voices when they talk to me at the moment. I'm getting kind of sick of that! I spend a lot of the time on the phone making appointments at the moment - and then making further calls to arrange childcare/ support etc. Everyone is working hard to ensure that they have maximum information for the colo-rectal surgeon to provide us with good advice.
I've had a CT to check for other cancer (sobering) and have an MRI scheduled for a more detailed view of my colon.
It may feel kind of stink of me to be letting you know like this. Please understand that we have told people based on urgency of need (particularly having the children looked after during appointments) and wanted to put back telling people generally until we had much better information. Also, unless you have done this before, sitting down and telling your friends face to face what is going on is horrid hard work. Especially when you don't like upsetting people.
Also, we knew that there would be a difficult conversation with our oldest daughter as we try to explain some of the worst information that you can give a child. It is important to us that we be accurate, honest and make the children feel safe and well cared for.
It is quite likely that we will be leaning heavily on our friends and family for support over the next wee while. It has been a real nasty shock for both of us, and we have no control over things like appointment times. We do appreciate frequent enquiries as to how we are feeling - it does help. Black humour is fine, there hasn't been nearly enough jokes about butt cancer. We do ask that people try to keep discussion away from children's ears - we don't want the kids having to field lots of questions from their friends. Cancer Society and Skylight have some good resources for tricky questions.
Mine was a couple of weeks ago, and it took an unexpectedly long time. That was because there was a lot of polyps in there and the surgeon did his best to remove all of them. The odd polyp isn't unusual, the amount I had is. One of the lesions was ulcerated, and in the doctor's opinion, suspicious of malignancy. I was still fairly sedated, so it was a shock, but kind of a muffled shock. The week that followed was pretty horrid as we contemplated the possibility of a very nasty cancer gene syndrome, the possibility that all removed polyps were cancerous and the possibility that they were high grade.
I was told last week that there was ONE LOW GRADE lesion, and that nothing tested came back positive for the nasty genetic syndrome. While I was upset to be told that I did have cancer, it was a lot less cancer and a lot less bad than it could have been. There were no info packs or tissues in the room, just a registrar I'd never met from a service I thought I was finished with. Also, I actually thought that I was at the appointment for something else, so didn't have anyone with me, I'd focussed more on getting the kids sorted for the appointment time. Moral is: support people, every visit.
We've been well treated by the hospital - I tell you what, you know it is serious when you receive phone calls about your follow up appointments (because they are the next day). Also, people use their very serious voices when they talk to me at the moment. I'm getting kind of sick of that! I spend a lot of the time on the phone making appointments at the moment - and then making further calls to arrange childcare/ support etc. Everyone is working hard to ensure that they have maximum information for the colo-rectal surgeon to provide us with good advice.
I've had a CT to check for other cancer (sobering) and have an MRI scheduled for a more detailed view of my colon.
It may feel kind of stink of me to be letting you know like this. Please understand that we have told people based on urgency of need (particularly having the children looked after during appointments) and wanted to put back telling people generally until we had much better information. Also, unless you have done this before, sitting down and telling your friends face to face what is going on is horrid hard work. Especially when you don't like upsetting people.
Also, we knew that there would be a difficult conversation with our oldest daughter as we try to explain some of the worst information that you can give a child. It is important to us that we be accurate, honest and make the children feel safe and well cared for.
It is quite likely that we will be leaning heavily on our friends and family for support over the next wee while. It has been a real nasty shock for both of us, and we have no control over things like appointment times. We do appreciate frequent enquiries as to how we are feeling - it does help. Black humour is fine, there hasn't been nearly enough jokes about butt cancer. We do ask that people try to keep discussion away from children's ears - we don't want the kids having to field lots of questions from their friends. Cancer Society and Skylight have some good resources for tricky questions.
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