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.
Sep 19, 2016
Sep 12, 2016
Over- and Under-Diagnosis and Treatment of Breast Cancer
I found this interesting discussion on over and under diagnosis of breast cancer and how to avoid it. Its definitely worth the read.
The big take away I found in the article is that the best way to avoid overdiagnosis is to get screening done at a breast center where the radiologists read mammograms daily. Through their jobs, they see many more breast images than other radiologists who are not as specialized and much more apt to correctly diagnose breast cancer.
Also, better education of patients and oncologists will also help with preventing over-treatment. Often the first reaction at a cancer diagnosis is 'get rid of it now and make sure it doesn't come back!' Fear takes over and the reaction of a patient goes instantly to get rid of it.
But maybe if the patient takes time to educate themselves on treatment possibilities the fear can be controlled. And the doctor is educated enough to provide the support to help the patient make the best choices and not the impulsive choices. Then the chance of over treatment can be reduced.
I think that this issue of over treatment and over diagnosis for many ailments needs more awareness and focus. We need better trained medical personnel who are able to better read screening images and provide better diagnoses. We also need additional training for medical personnel to help patients make better decisions. Finally we need more information available for patients to reduce the fear at diagnosis so they are able to make better decisions.
The big take away I found in the article is that the best way to avoid overdiagnosis is to get screening done at a breast center where the radiologists read mammograms daily. Through their jobs, they see many more breast images than other radiologists who are not as specialized and much more apt to correctly diagnose breast cancer.
Also, better education of patients and oncologists will also help with preventing over-treatment. Often the first reaction at a cancer diagnosis is 'get rid of it now and make sure it doesn't come back!' Fear takes over and the reaction of a patient goes instantly to get rid of it.
But maybe if the patient takes time to educate themselves on treatment possibilities the fear can be controlled. And the doctor is educated enough to provide the support to help the patient make the best choices and not the impulsive choices. Then the chance of over treatment can be reduced.
I think that this issue of over treatment and over diagnosis for many ailments needs more awareness and focus. We need better trained medical personnel who are able to better read screening images and provide better diagnoses. We also need additional training for medical personnel to help patients make better decisions. Finally we need more information available for patients to reduce the fear at diagnosis so they are able to make better decisions.
Sep 6, 2016
Progesterone too?
So I have always wondered, what about progesterone in breast cancer treatment. A big part of your breast cancer diagnosis is its hormone status. My breast cancer was the most common type - ER+/PR+/Her2-. That translates to estrogen and progesterone positive and her2 negative.
This determines a big part of your treatment. If you are estrogen positive you are treated with Tamoxifen and/or one of the aromatase inhibitors. If you are Her2 positive, you can receive Herceptin. But no one ever said anything about progesterone. I always wondered why it was part of the diagnosis if it didn't affect treatment. I mean why bother?
But now things have changed. New research has found a way to control progesterone as well:
"Cancers with progesterone receptors are known for growing more slowly, however scientists have not been able to exploit this fact until they discovered the way they interact with estrogen, which causes the growth of some tumors"
"In the new study, researchers found that progesterone receptors interact with estrogen receptors in the tumor, changing their behavior and slowing the tumor's growth."
"Roughly 75 percent of women with breast cancer have tumors with the estrogen receptor, and 75 percent of those tumors also have progesterone receptors -- suggesting more than half of these patients could benefit if the treatment is shown to be successful."
And the outcome should be a cheap and safe treatment option.I'm all for this.
This determines a big part of your treatment. If you are estrogen positive you are treated with Tamoxifen and/or one of the aromatase inhibitors. If you are Her2 positive, you can receive Herceptin. But no one ever said anything about progesterone. I always wondered why it was part of the diagnosis if it didn't affect treatment. I mean why bother?
But now things have changed. New research has found a way to control progesterone as well:
"Cancers with progesterone receptors are known for growing more slowly, however scientists have not been able to exploit this fact until they discovered the way they interact with estrogen, which causes the growth of some tumors"
"In the new study, researchers found that progesterone receptors interact with estrogen receptors in the tumor, changing their behavior and slowing the tumor's growth."
"Roughly 75 percent of women with breast cancer have tumors with the estrogen receptor, and 75 percent of those tumors also have progesterone receptors -- suggesting more than half of these patients could benefit if the treatment is shown to be successful."
And the outcome should be a cheap and safe treatment option.I'm all for this.
Sep 5, 2016
Breast cancer and flabbiness
I am not sure this article tells me that much but it did try to figure out if breast cancer and its treatment cause weight gain. It discusses the results of a recent study that was recently published.
So breast cancer increases in incidence right about the same age as menopause. Therefore there has been some confusion if its menopause or cancer and its treatment that cause weight gain. But this article did nothing to help me.
First of all it looked at an average weight gain of 4 lbs for women with breast cancer who did not have chemo and of 11 lbs for women who received chemotherapy. 4 lbs or 11 lbs? That's nothing. I am more concerned about the 20 or 30 lbs weight gains. I know women who said they gained 5-10 lbs during treatment and then lost them. Those of us who gained more, even if active during treatment, have many more problems losing weight.
The real concern is that weight gain can have longer term health risks.
But the study promises to follow up with the women over a longer period of time. I would like to see a study about the women who gain 20 lbs or more during cancer treatment and ensuing health issues. No one ever seems to care what I think. Or to include me in research because I have too many other issues and would skew their data.
So breast cancer increases in incidence right about the same age as menopause. Therefore there has been some confusion if its menopause or cancer and its treatment that cause weight gain. But this article did nothing to help me.
First of all it looked at an average weight gain of 4 lbs for women with breast cancer who did not have chemo and of 11 lbs for women who received chemotherapy. 4 lbs or 11 lbs? That's nothing. I am more concerned about the 20 or 30 lbs weight gains. I know women who said they gained 5-10 lbs during treatment and then lost them. Those of us who gained more, even if active during treatment, have many more problems losing weight.
The real concern is that weight gain can have longer term health risks.
But the study promises to follow up with the women over a longer period of time. I would like to see a study about the women who gain 20 lbs or more during cancer treatment and ensuing health issues. No one ever seems to care what I think. Or to include me in research because I have too many other issues and would skew their data.
Aug 29, 2016
A long sad day
Yesterday I drove my parents to the memorial service for a neighbor from my childhood. It was a 330 mile round trip. By the time I got home it was nearly 9pm and 12 hours from when I left the house. I don't travel so well these days so I made a point of getting a lot of sleep last night.
Susan died last fall from breast cancer, six weeks after her diagnosis. She had ignored pain in her ribs last spring because she thought she had strained something. She was a farmer and very active. Also her tumor was so far back and so close to her ribs, it may not have shown up on a mammogram. It wasn't until she started feeling many more symptoms did she end up in the emergency room and got some very bad news.
Her mother was also diagnosed with early stage breast cancer in early 2014. So in speaking with her two remaining sisters, I made a point of telling them both they should consider themselves high risk for breast cancer. They agreed and said they had already spoken to their doctors about it.
It was a nice memorial service and internment of her ashes followed by a family gathering at their house on the ocean. I got to catch up with both her sisters, mother, and another friend from 4-H back in the 1960s.
I also met a woman who has the same rheumatologist as me. Her rheumatoid was more advanced than mine and she has had six joints replaced - both ankles, knee, and hips. I can't remember them all. She has refused to go on to a biologic and has been on methotrexate for 14 years. She was in a wheelchair because of her recent surgeries. I never want to be in a wheel chair. Another sad reminder of the implications of my ailments.
Between a memorial service, a long drive, and seeing the implications of rheumatoid. It had an emotional as well as a physical toll. I need a day off today but have too much to do.
Susan died last fall from breast cancer, six weeks after her diagnosis. She had ignored pain in her ribs last spring because she thought she had strained something. She was a farmer and very active. Also her tumor was so far back and so close to her ribs, it may not have shown up on a mammogram. It wasn't until she started feeling many more symptoms did she end up in the emergency room and got some very bad news.
Her mother was also diagnosed with early stage breast cancer in early 2014. So in speaking with her two remaining sisters, I made a point of telling them both they should consider themselves high risk for breast cancer. They agreed and said they had already spoken to their doctors about it.
It was a nice memorial service and internment of her ashes followed by a family gathering at their house on the ocean. I got to catch up with both her sisters, mother, and another friend from 4-H back in the 1960s.
I also met a woman who has the same rheumatologist as me. Her rheumatoid was more advanced than mine and she has had six joints replaced - both ankles, knee, and hips. I can't remember them all. She has refused to go on to a biologic and has been on methotrexate for 14 years. She was in a wheelchair because of her recent surgeries. I never want to be in a wheel chair. Another sad reminder of the implications of my ailments.
Between a memorial service, a long drive, and seeing the implications of rheumatoid. It had an emotional as well as a physical toll. I need a day off today but have too much to do.