(I forgot to blog yesterday. Feel free to blame chemo brain, fibro fog or whatever.)
I just learned about some new research which has lead to the use of mutation tracking in the blood of patients previously treated for breast cancer. They look for DNA mutations to detection recurrence months before anything would be detectable through scans.
This makes a lot of sense to me. Why can't cancer be detected in DNA or some other way long before it can be found in a scan? Wouldn't it be wonderful to just go for an annual blood test or something that told you if you had cancer developing? Not to get ahead of myself but I am all for this.
I like this kind of progress. It actually seems that doctors are beginning to use it.
Showing posts with label cancer recurrence. Show all posts
Showing posts with label cancer recurrence. Show all posts
Nov 18, 2019
Apr 3, 2017
The 'joys' and solitude of a second cancer
When diagnosed with a first cancer, we are all gobsmacked, appalled, overwhelmed, stunned, depressed, shocked, awed, overrun, and more as a result. You struggle through treatment and the ensuing body changes and emotions and slowly return to that so called 'new' normal and life resumes.
Then when cancer, the 'gift that keeps on giving', shows up again, you start all over again. It can be a dreaded recurrence or metastases or you can start all over again with a new cancer. Second cancers are not recurrences but new primaries. Such a joy. Not really.
When my second cancer showed up, in some ways it put me back to where I was emotionally but I was better prepared for it emotionally. And I was more proactive in coping with it. I joined support groups, on and off line, got therapy and worked hard at accepting this new health disaster.
However, I was basically the only one I knew who had had two cancers as me. Actually I know one other person in the world who had both breast cancer and thyroid cancer. (I know there are other people who have had these two cancers because it is not that uncommon that they show up in the same person but the only person I could connect to was in Europe.) We were both in the same online support group. She posted a message asking if anyone had had both and I responded.
With one cancer, you can find a ribbon to support you, a group of people like you with the cancer, and you can all bond with each other. Or you find a group of people have had a single cancer and you all can talk about the joys of treatment. But with a second cancer, you become an outlier. Most people only get one cancer. The multiple diagnoses are much fewer.
This is starting to change. New research (because we always need more research) shows that one in five cancer diagnoses are second cancers. In the 1970s only 9% of cancer diaganoses were second cancers. There are many reasons for this:
"About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent. Over that period, the number of first cancers rose 70 percent while the number of second cancers rose 300 percent.
Strange as it may sound, this is partly a success story: More people are surviving cancer and living long enough to get it again, because the risk of cancer rises with age."
So since I was young to get my first cancer, before age 20, and young to get my second cancer, before age 50, am I doomed to get more cancers? But at least it won't be as lonely as this second cancer rate continues to rise.
Then when cancer, the 'gift that keeps on giving', shows up again, you start all over again. It can be a dreaded recurrence or metastases or you can start all over again with a new cancer. Second cancers are not recurrences but new primaries. Such a joy. Not really.
When my second cancer showed up, in some ways it put me back to where I was emotionally but I was better prepared for it emotionally. And I was more proactive in coping with it. I joined support groups, on and off line, got therapy and worked hard at accepting this new health disaster.
However, I was basically the only one I knew who had had two cancers as me. Actually I know one other person in the world who had both breast cancer and thyroid cancer. (I know there are other people who have had these two cancers because it is not that uncommon that they show up in the same person but the only person I could connect to was in Europe.) We were both in the same online support group. She posted a message asking if anyone had had both and I responded.
With one cancer, you can find a ribbon to support you, a group of people like you with the cancer, and you can all bond with each other. Or you find a group of people have had a single cancer and you all can talk about the joys of treatment. But with a second cancer, you become an outlier. Most people only get one cancer. The multiple diagnoses are much fewer.
This is starting to change. New research (because we always need more research) shows that one in five cancer diagnoses are second cancers. In the 1970s only 9% of cancer diaganoses were second cancers. There are many reasons for this:
"About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent. Over that period, the number of first cancers rose 70 percent while the number of second cancers rose 300 percent.
Strange as it may sound, this is partly a success story: More people are surviving cancer and living long enough to get it again, because the risk of cancer rises with age."
So since I was young to get my first cancer, before age 20, and young to get my second cancer, before age 50, am I doomed to get more cancers? But at least it won't be as lonely as this second cancer rate continues to rise.
Sep 19, 2016
Cutting the last cord
What happens after all the treatment? Cancer patients are diagnosed and then get all kinds of care to make sure it doesn't come back (which is our greatest fear).
At the end of treatment, all of a sudden this constant care by all kinds of medical people to check you over and reassure you that it hasn't come back comes to a screeching halt. At this point, the doctors all say come back in 3, 6, or 12 months and we will check again. And the patient says 'whhhaaattt? But what if it comes back? Who will know?'
This is the most frequent time for patients to wig out and require emotional support from a support group or therapist to make sure they don't go off the deep end. It is a very stressful time. You are alone with the little thoughts in the middle of the night - what if it comes back?
With breast cancer, its a little different. You get surgery and chemotherapy. Medical personnel is all around to be aware of a single sneeze. Then some get radiation as well where you are seen daily for weeks on end. At the end of this time most go on to hormonal therapy - Tamoxifen, Femara, Aromasin, or the other one who's name I can't remember right now. That lasts for five to ten years. And then finally you are on your own and you see your oncologist maybe once a year.
I went through this a long time ago when I had thyroid cancer. At the end of about six months of doctor appointments I was left to cope on my own. And I can tell you in some ways it really sucked big time. And left me with some strong emotional issues that took a long time to recover from.
When I was diagnosed with breast cancer, I told myself I was not going to let cancer suck any happiness out of my life and went to support groups before my first surgery. Then I got a therapist at the end of radiation as well. But I was still on hormonal medication - 2 years of Tamoxifen and then Femara.
Yesterday I went to see my oncologist and she said it was time for me to end Femara - that last little pill to help prevent it from coming back. She said she had mentioned this at my visit last year but since I can't remember last week, never mind last year, I had no memory of this.
Basically while there is lots of data on the benefits of staying on Tamoxifen for ten years there is no research now to prove there is any benefit to staying on Femara or other aromatase inhibitors for longer than five years. There are ongoing studies on this but no results yet. This research will take years because they are following women after five years of Femara.
My oncologist brought up the joint pain issues I have. She said that one of the side effects of Femara was joint pain. I couldn't tell you if I am experiencing this or not. All I can remember is after chemo, I went on Tamoxifen and started feeling better because I wasn't in chemo any more. Then after two years of Tamoxifen I went on Femara and again started feeling better again because the side effects of Tamoxifen can be pretty bad. But I have no idea how I would feel not being on Femara because pre-breast cancer I was a much healthier person.
So now the plan is I am off Femara for now through Labor Day. That should give enough time for it to leave my system and see if I have any fewer pains or if I get too worried. My oncologist brought up the stress of recurrence fears, not me. She said at that time, I can always decide to go back on it if I want.
I am happy to take one less pill each day. But it has been the last stand against recurrence. So now I have to learn to live without the benefits of anything to prevent recurrence. For now, I think I can live with this. But if my mind starts playing tricks on me with this recurrence crap, I may wimp out and decide to go back on it.
At the end of treatment, all of a sudden this constant care by all kinds of medical people to check you over and reassure you that it hasn't come back comes to a screeching halt. At this point, the doctors all say come back in 3, 6, or 12 months and we will check again. And the patient says 'whhhaaattt? But what if it comes back? Who will know?'
This is the most frequent time for patients to wig out and require emotional support from a support group or therapist to make sure they don't go off the deep end. It is a very stressful time. You are alone with the little thoughts in the middle of the night - what if it comes back?
With breast cancer, its a little different. You get surgery and chemotherapy. Medical personnel is all around to be aware of a single sneeze. Then some get radiation as well where you are seen daily for weeks on end. At the end of this time most go on to hormonal therapy - Tamoxifen, Femara, Aromasin, or the other one who's name I can't remember right now. That lasts for five to ten years. And then finally you are on your own and you see your oncologist maybe once a year.
I went through this a long time ago when I had thyroid cancer. At the end of about six months of doctor appointments I was left to cope on my own. And I can tell you in some ways it really sucked big time. And left me with some strong emotional issues that took a long time to recover from.
When I was diagnosed with breast cancer, I told myself I was not going to let cancer suck any happiness out of my life and went to support groups before my first surgery. Then I got a therapist at the end of radiation as well. But I was still on hormonal medication - 2 years of Tamoxifen and then Femara.
Yesterday I went to see my oncologist and she said it was time for me to end Femara - that last little pill to help prevent it from coming back. She said she had mentioned this at my visit last year but since I can't remember last week, never mind last year, I had no memory of this.
Basically while there is lots of data on the benefits of staying on Tamoxifen for ten years there is no research now to prove there is any benefit to staying on Femara or other aromatase inhibitors for longer than five years. There are ongoing studies on this but no results yet. This research will take years because they are following women after five years of Femara.
My oncologist brought up the joint pain issues I have. She said that one of the side effects of Femara was joint pain. I couldn't tell you if I am experiencing this or not. All I can remember is after chemo, I went on Tamoxifen and started feeling better because I wasn't in chemo any more. Then after two years of Tamoxifen I went on Femara and again started feeling better again because the side effects of Tamoxifen can be pretty bad. But I have no idea how I would feel not being on Femara because pre-breast cancer I was a much healthier person.
So now the plan is I am off Femara for now through Labor Day. That should give enough time for it to leave my system and see if I have any fewer pains or if I get too worried. My oncologist brought up the stress of recurrence fears, not me. She said at that time, I can always decide to go back on it if I want.
I am happy to take one less pill each day. But it has been the last stand against recurrence. So now I have to learn to live without the benefits of anything to prevent recurrence. For now, I think I can live with this. But if my mind starts playing tricks on me with this recurrence crap, I may wimp out and decide to go back on it.