Hey, Michelangelo, I'm right there with you. I was diagnosed with thyroid cancer in the summer of 2019. I had my thyroid removed a month later and had radioactive iodine treatment which is supposed to remove any residual thyroid tissue. One year later, before moving to rural Arizona (and losing my health insurance), my endocrinologist wanted to repeat full body scans before I left, so I had to go back on a low iodine diet, do the scans, etc. He reported that there was still no signs of cancer or thyroid tissue, so he felt comfortable with my move out here. I asked him if I was considered "cancer free" at this point and he got a bit uncomfortable. I think he said something like "we want to give it at least 2 years" but didn't explain any further.
For the first 6 months out here with no insurance I couldn't do anything except occasional labs. I also moved to an area with virtually no providers, and the closest endocrinologist was an hour away. Luckily I was able to go on Medicare in 2021 so I could get a neck ultrasound. Things still looked good until November of 2021 when I had an abnormal lymph node and no provider. I was looking at going back to Wisconsin and trying to find a place to stay when I found a clinic 90 minutes away that would do a biopsy, which proved to be normal.
All of this to say, for me no matter what my current status is called, or not called, I believe I'm someone who has been living with cancer since the day I was diagnosed. It's always there in the background, creating a low level of anxiety despite reassurances, good labs, and good scans. I do know people who have not had any kind of recurrence or abnormal test in over 10 years; some of them consider themselves "cured" or cancer free. Some do not.
It all depends on how we live with this, or, really, how we all live not knowing how much time we have. I have also learned to have a lot more compassion for people who live without access to providers or without insurance, or both, having been that person. There are millions of people in this situation and it is shameful to not have health insurance in this country.
Thank you Diane, and yes, I remember when you relayed this information before, when you caught with the newsletter again. And your perspective is right on. It's about your personal experience and every one is different.
Great discussion on prostate cancer, Mike. I just had a lumpectomy for a Stage 1 little lump last week, and one of my doctors said "home...free!" But who knows, right? I have a good friend in the Seattle gay community who had the 'nerve-saving' surgery for his prostate cancer in 2010, and he's never said that there's been any recurrence at all, and he's now 67. I understand that some prostate cancers can show up very, very late in men's lives, say when they are in their late 80's, and that becomes confusing because a relative or friend may say they were 'living with prostate cancer' when they died, but that isn't necessarily the cause of death at all, because it's so slow growing at that point.
The other issue, of course, is the toxicity of our environments. AARP recently had an article about the rise in auto-immune diseases, noting that at least 80 elements have been added to our environments since 1960 that may lead to onset of such diseases. (Oh, thanks a lot, Monsanto and Bayer and Dow....)
And new studies show that anyone living in an area with high rates of air pollution has a shorter lifespan (like the planet's atmosphere).
Whatever happens, life is a crap shoot, and I'm always happy that I got a chance to be here and experience it all! And you, too!
Lorie and Mike, I have an incurable autoimmune disease diagnosed in 2009. I have no doubt it’s from environmental exposures. So far, the one and only medication seems to be working. But a diagnoses like that (incurable) is the same as “living with” in many ways.
Sorry to hear about that Chris, but you never know what's around the corner! It's always important for Congress to support R&D for the NIH and National Science Foundation! I started suffering from terrible migraines when I was 33, in 1977, and the only medications available at that time gave you a choice - take the medicine and have the side effects, or have the migraine and be down all weekend with an icepack, a dark room, and a great desire to throw yourself out a window.
But miracle of miracles, the FDA approved a new class of drugs, the sumatriptins, in 1991-92, and they were succesful for me! I usually always carry at least 1 pill with me - no matter where you are in the onset of a migraine, they will interrupt it and make it disappear in @ 40 min. - a totally freeing life, freed from 48-60 hour migraines! Best of luck, always.
Michelangelo, I had a similar prostrate experience but with a different form of radiation. I stay in touch with my doctors as they request and I don't give it much thought. Primarily that is because I had a very near fatal heart attack in November of 21. I was extremely fortunate to have been in the ER waiting for a test when I coded or my outcome would have been worse.
When I began cardio rehab in the hospital a tech was not paying attention and allowed me to fall which broke my left ankle to the extent that I needed surgery. Two days later a nurse, who should have known better, botched getting me back into bed and we both fell breaking my other ankle. I am still recovering from the broken ankles.
My grandfather was a surgeon and I am very comfortable in hospitals and I expect my doctors to do the best they can. But sh*t happens. It's nice Micheangelo if you have the luxury of only worrying about your prostrate cancer. As you say, it could go in the wrong direction. But trust me that the world is full of medical mishaps waiting to take you down. Get your regular checkup, take your meds, hope (or pray) for the best. It's out of your hands.
Oh fer Pete's sake John that all sounds terrible. I acknowledge you for your apparent sense of grace describing these mishaps that were clearly someone else's responsibility. I hope you are healing and moving towards renewed mobility in whatever form that means for you.
Thanks Diane. I look on the positive side. I know that I crossed over the line before being brought back. I can tell the way that my GP looks at me that he is amazed I am actually here and functioning. Therefore, since that time, all of my life is a gift and I try very hard to treat it that way.
Oh John I'm so sorry that on top of the health issues you had staff who didn't do their jobs adequately and it adversely affected you. And thanks for the kind words. Some much-needed perspective. Be well.
Hi Mike, love all you do. I had anal cancer in 2014 and did the chemo/radiation thing. Scary to be that close to the cliff-edge of death. Looking over it then, I appreciated all I have experienced in my life.
Regardless of what my doctors tell me, I now know that life can disappear just that quickly. I’m still cancer- normal … for now. Every day is a mystery of life.
Glad to hear the numbers remain low for you Michelangelo. It is more likely to be living with it, than to actually be cured, as I understand it. I am battling similar issues having been diagnosed with Type II Diabetes 6 years ago. My brother was diagnosed at 54, me at 62. Neither parent nor grandparents had it, but I got info from my cousin that our Paternal great grandmother had 'sugar', as they put it in those days. She lived pre-insulin and made it to 98! There's hope for me. I take half the medication I started with when my A1c was discovered to be 10.5 and I had no idea. As of November 22, it is 5.9. I walk 6-7 miles every day where I live and maintain a healthy diet.
So, not sure I'll ever be 'cured', but I am definitely living with it. Be well.
Congratulations, Michelangelo. I am so glad you are healthy. I look forward to your writing every day. You are needed and loved. From Tom in Los Angeles.
Sending healthy thoughts your way to beat the cancer. My father had prostate cancer. Surgery removed a small piece of it but couldn't reach all of it. Doctors gave him 5 years yet it never did kill him. They can keep treating you for many years.
Mike, I wanted to thank you for sharing your journey, truly an experience all of us can benefit from. I admire your courage and resilience...you remind me of my father, of blessed memory, who had non Hodgkin lymphoma, through experimental drugs we kept him alive for 18 years, quality years. Again, all my best and pray you will be around for a long long time, we need you. Fred
Hi Michael. Thank you so much for sharing this update. My wife is considered "cured," after living through a RARE HRT-related cancer back in 2001 and 2002 (adenocarcinoma of the cervix). She had the giant cut, external beam radiation (5 days a week for six weeks), two weeks off, and then had a cesium implant for 24 hours (where she stayed in a lead lined hospital room). She's had not even a whisper of cancer....BUT, the cesium dissolved both hips, and then two related tendons. So, being able to walk is very difficult (the new hips are fabulous, but you can't replace these tendons). She's thankful every day for being alive and is sanguine about the disabilities. I continue to hope you have a very boring health history.
I know what you mean about “living with prostate cancer.” I’m “living with melanoma,” and though I’ve been cancer-free since my operation 4 years ago, it took a bit to assimilate that cancer-free does not mean cured. Fortunately you are healthy, as am I, so at my 67 years my goal is to make the most of it. You are doing exactly that.
I commend you for being as upfront and forthcoming about your cancer experience as you are. The love of my life died from most probably a heart attack in 2020, on Christmas Eve of all nights. Because we were not legally married, his greedy brother got all his stuff, and was very selective of what medical information regarding my partner he shared with me.
I wish my love had told me more about his aches and pains in the days, weeks and months before Christmas so I could have been more motivated to keeping him and myself more active and not allowed the Year of Living Covidly weight gain to stop his heart. Keeping silent about health issues makes them more likely to be deadly.
Doctors know that there is, inexplicably, the possibility that your body will do better/cure itself. So oncologists try to be realistic, but also positive. Doctors working with your bodies internal systems (urologists, gynecologists, etc) are more pragmatic. What concerns me is how medicine treats ‘cured’ patients. You’re cured until you’re not. And too often the cancer has metastasized or changed types of cancer by the time it’s discovered. If a patient has been treated for a cancer that can spread to other body parts, we need Western medicine to use and/or identify a need for testing that checks potential spread areas as well as any traditional testing like the PSA. Even if it’s only yearly, more extensive preemptive testing could identify spread much more quickly.
Hey, Michelangelo, I'm right there with you. I was diagnosed with thyroid cancer in the summer of 2019. I had my thyroid removed a month later and had radioactive iodine treatment which is supposed to remove any residual thyroid tissue. One year later, before moving to rural Arizona (and losing my health insurance), my endocrinologist wanted to repeat full body scans before I left, so I had to go back on a low iodine diet, do the scans, etc. He reported that there was still no signs of cancer or thyroid tissue, so he felt comfortable with my move out here. I asked him if I was considered "cancer free" at this point and he got a bit uncomfortable. I think he said something like "we want to give it at least 2 years" but didn't explain any further.
For the first 6 months out here with no insurance I couldn't do anything except occasional labs. I also moved to an area with virtually no providers, and the closest endocrinologist was an hour away. Luckily I was able to go on Medicare in 2021 so I could get a neck ultrasound. Things still looked good until November of 2021 when I had an abnormal lymph node and no provider. I was looking at going back to Wisconsin and trying to find a place to stay when I found a clinic 90 minutes away that would do a biopsy, which proved to be normal.
All of this to say, for me no matter what my current status is called, or not called, I believe I'm someone who has been living with cancer since the day I was diagnosed. It's always there in the background, creating a low level of anxiety despite reassurances, good labs, and good scans. I do know people who have not had any kind of recurrence or abnormal test in over 10 years; some of them consider themselves "cured" or cancer free. Some do not.
It all depends on how we live with this, or, really, how we all live not knowing how much time we have. I have also learned to have a lot more compassion for people who live without access to providers or without insurance, or both, having been that person. There are millions of people in this situation and it is shameful to not have health insurance in this country.
Thank you Diane, and yes, I remember when you relayed this information before, when you caught with the newsletter again. And your perspective is right on. It's about your personal experience and every one is different.
Great discussion on prostate cancer, Mike. I just had a lumpectomy for a Stage 1 little lump last week, and one of my doctors said "home...free!" But who knows, right? I have a good friend in the Seattle gay community who had the 'nerve-saving' surgery for his prostate cancer in 2010, and he's never said that there's been any recurrence at all, and he's now 67. I understand that some prostate cancers can show up very, very late in men's lives, say when they are in their late 80's, and that becomes confusing because a relative or friend may say they were 'living with prostate cancer' when they died, but that isn't necessarily the cause of death at all, because it's so slow growing at that point.
The other issue, of course, is the toxicity of our environments. AARP recently had an article about the rise in auto-immune diseases, noting that at least 80 elements have been added to our environments since 1960 that may lead to onset of such diseases. (Oh, thanks a lot, Monsanto and Bayer and Dow....)
And new studies show that anyone living in an area with high rates of air pollution has a shorter lifespan (like the planet's atmosphere).
Whatever happens, life is a crap shoot, and I'm always happy that I got a chance to be here and experience it all! And you, too!
Thank you Lorie -- and wishing you the best of health after that scare. Yes, home-free until something else right? but..maybe not. good luck.
Lorie and Mike, I have an incurable autoimmune disease diagnosed in 2009. I have no doubt it’s from environmental exposures. So far, the one and only medication seems to be working. But a diagnoses like that (incurable) is the same as “living with” in many ways.
Sorry to hear about that Chris, but you never know what's around the corner! It's always important for Congress to support R&D for the NIH and National Science Foundation! I started suffering from terrible migraines when I was 33, in 1977, and the only medications available at that time gave you a choice - take the medicine and have the side effects, or have the migraine and be down all weekend with an icepack, a dark room, and a great desire to throw yourself out a window.
But miracle of miracles, the FDA approved a new class of drugs, the sumatriptins, in 1991-92, and they were succesful for me! I usually always carry at least 1 pill with me - no matter where you are in the onset of a migraine, they will interrupt it and make it disappear in @ 40 min. - a totally freeing life, freed from 48-60 hour migraines! Best of luck, always.
AND - JUST SAY GAY, GAY, GAY!!!
So happy to hear this update, MIchelangelo. Sending love and light your way!!
Thank you for yet another thoughtful article. You are a treasure and thank you for being the voice of many.
Michelangelo, I had a similar prostrate experience but with a different form of radiation. I stay in touch with my doctors as they request and I don't give it much thought. Primarily that is because I had a very near fatal heart attack in November of 21. I was extremely fortunate to have been in the ER waiting for a test when I coded or my outcome would have been worse.
When I began cardio rehab in the hospital a tech was not paying attention and allowed me to fall which broke my left ankle to the extent that I needed surgery. Two days later a nurse, who should have known better, botched getting me back into bed and we both fell breaking my other ankle. I am still recovering from the broken ankles.
My grandfather was a surgeon and I am very comfortable in hospitals and I expect my doctors to do the best they can. But sh*t happens. It's nice Micheangelo if you have the luxury of only worrying about your prostrate cancer. As you say, it could go in the wrong direction. But trust me that the world is full of medical mishaps waiting to take you down. Get your regular checkup, take your meds, hope (or pray) for the best. It's out of your hands.
Oh fer Pete's sake John that all sounds terrible. I acknowledge you for your apparent sense of grace describing these mishaps that were clearly someone else's responsibility. I hope you are healing and moving towards renewed mobility in whatever form that means for you.
Thanks Diane. I look on the positive side. I know that I crossed over the line before being brought back. I can tell the way that my GP looks at me that he is amazed I am actually here and functioning. Therefore, since that time, all of my life is a gift and I try very hard to treat it that way.
Oh John I'm so sorry that on top of the health issues you had staff who didn't do their jobs adequately and it adversely affected you. And thanks for the kind words. Some much-needed perspective. Be well.
So glad that you are continuing to follow up and that you are in good health. We need you Michelangelo!!!
Thank you!
Hi Mike, love all you do. I had anal cancer in 2014 and did the chemo/radiation thing. Scary to be that close to the cliff-edge of death. Looking over it then, I appreciated all I have experienced in my life.
Regardless of what my doctors tell me, I now know that life can disappear just that quickly. I’m still cancer- normal … for now. Every day is a mystery of life.
Thank you, wishing you good health.
Glad to hear the numbers remain low for you Michelangelo. It is more likely to be living with it, than to actually be cured, as I understand it. I am battling similar issues having been diagnosed with Type II Diabetes 6 years ago. My brother was diagnosed at 54, me at 62. Neither parent nor grandparents had it, but I got info from my cousin that our Paternal great grandmother had 'sugar', as they put it in those days. She lived pre-insulin and made it to 98! There's hope for me. I take half the medication I started with when my A1c was discovered to be 10.5 and I had no idea. As of November 22, it is 5.9. I walk 6-7 miles every day where I live and maintain a healthy diet.
So, not sure I'll ever be 'cured', but I am definitely living with it. Be well.
Thank you David and be well!
Congratulations, Michelangelo. I am so glad you are healthy. I look forward to your writing every day. You are needed and loved. From Tom in Los Angeles.
Sending healthy thoughts your way to beat the cancer. My father had prostate cancer. Surgery removed a small piece of it but couldn't reach all of it. Doctors gave him 5 years yet it never did kill him. They can keep treating you for many years.
Mike, I wanted to thank you for sharing your journey, truly an experience all of us can benefit from. I admire your courage and resilience...you remind me of my father, of blessed memory, who had non Hodgkin lymphoma, through experimental drugs we kept him alive for 18 years, quality years. Again, all my best and pray you will be around for a long long time, we need you. Fred
Hi Michael. Thank you so much for sharing this update. My wife is considered "cured," after living through a RARE HRT-related cancer back in 2001 and 2002 (adenocarcinoma of the cervix). She had the giant cut, external beam radiation (5 days a week for six weeks), two weeks off, and then had a cesium implant for 24 hours (where she stayed in a lead lined hospital room). She's had not even a whisper of cancer....BUT, the cesium dissolved both hips, and then two related tendons. So, being able to walk is very difficult (the new hips are fabulous, but you can't replace these tendons). She's thankful every day for being alive and is sanguine about the disabilities. I continue to hope you have a very boring health history.
Thank you Catherine. wishing your wife the best.
I know what you mean about “living with prostate cancer.” I’m “living with melanoma,” and though I’ve been cancer-free since my operation 4 years ago, it took a bit to assimilate that cancer-free does not mean cured. Fortunately you are healthy, as am I, so at my 67 years my goal is to make the most of it. You are doing exactly that.
I commend you for being as upfront and forthcoming about your cancer experience as you are. The love of my life died from most probably a heart attack in 2020, on Christmas Eve of all nights. Because we were not legally married, his greedy brother got all his stuff, and was very selective of what medical information regarding my partner he shared with me.
I wish my love had told me more about his aches and pains in the days, weeks and months before Christmas so I could have been more motivated to keeping him and myself more active and not allowed the Year of Living Covidly weight gain to stop his heart. Keeping silent about health issues makes them more likely to be deadly.
I'm so sorry about your loss John, and the pain inflicted on you by his brother. And thank for your comments
Doctors know that there is, inexplicably, the possibility that your body will do better/cure itself. So oncologists try to be realistic, but also positive. Doctors working with your bodies internal systems (urologists, gynecologists, etc) are more pragmatic. What concerns me is how medicine treats ‘cured’ patients. You’re cured until you’re not. And too often the cancer has metastasized or changed types of cancer by the time it’s discovered. If a patient has been treated for a cancer that can spread to other body parts, we need Western medicine to use and/or identify a need for testing that checks potential spread areas as well as any traditional testing like the PSA. Even if it’s only yearly, more extensive preemptive testing could identify spread much more quickly.
good points Cynthia.