This is a less discussed issue relating to cancer diagnosis and treatment - the guilt factor. Sometimes its not even mentioned, while other times it is just brushed off as something you need to learn to live with.
Guilt is what got you to do what you were supposed to when you were a child. Guilt is what your morals use to keep you in line.
But then we feel cancer guilt which is different. Why didn't I get it and they did? Why did they have a recurrence and I didn't?
The more cancer friends I have gained, I have also lost some. I have the little list of in memorium blogs I used to follow, the group of friends on Facebook that are no longer here and are in memorium, there are the phone numbers in my phone that I know don't work any more. And when they do again, it will be a stranger's voice on the other end.
It seems now every month or two, or even more frequently, someone I know either has just learned about their stage IV diagnosis or I learn about their funeral arrangements.
Each time, there is a double dose of emotions the little tiny - "I'm glad it wasn't me" which is immediately followed by the huge "how could I even think that?" and then followed by cancer survivor guilt.
Sometimes the guilt lurks in the back ground and sometimes it emerges up front. It gives us down days but then we stuff it away and we learn to cope again. But its always there.
Showing posts with label cancer diagnosis. Show all posts
Showing posts with label cancer diagnosis. Show all posts
Fifteen Days? Really?
This I do not understand. I found an article on the how this new test speeds up the testing of the sentinel lymph node in breast cancer surgery in the UK. Previously it took 15 working days (!!!!) to get the test results. That's three weeks. That's completely crazy.
When I had my (bad) lumpectomy here in the US, I was told the instant test during surgery of the sentinel node had a margin of error of 50% and it really wasn't worth doing. The sentinel node was checked by the lab after surgery to confirm the results. I know several women who were told that the test they had during surgery was wrong so I guess my surgeon was right on this.
Now that was six years ago so technology must have changed and now there is a new test available in the UK for instant testing of the sentinel node during surgery. I hope the margin of error is less now.
But I digress. I just do not understand why it takes a lab in the UK 15 working days to confirm the presence of cancer. Three weeks? In my non medical understanding it is a relatively quick test - not like the ones which need to grow cells or something.
I remember being promised my results within a week and getting them in about four days. So why does it take three weeks on the other side of the ocean?
When I had my (bad) lumpectomy here in the US, I was told the instant test during surgery of the sentinel node had a margin of error of 50% and it really wasn't worth doing. The sentinel node was checked by the lab after surgery to confirm the results. I know several women who were told that the test they had during surgery was wrong so I guess my surgeon was right on this.
Now that was six years ago so technology must have changed and now there is a new test available in the UK for instant testing of the sentinel node during surgery. I hope the margin of error is less now.
But I digress. I just do not understand why it takes a lab in the UK 15 working days to confirm the presence of cancer. Three weeks? In my non medical understanding it is a relatively quick test - not like the ones which need to grow cells or something.
I remember being promised my results within a week and getting them in about four days. So why does it take three weeks on the other side of the ocean?
Lets redefine cancer
The question has arisen as to how to redefine cancer. A scientific panel states we are using a 19th century definition in the 21st century. The issue is should some precancerous conditions be redefined with out the use of the words cancer or carcinoma.
"In one example, they say that some premalignant conditions, such as one that affects the breast called ductal carcinoma in situ — which many doctors agree is not cancer — should be renamed to exclude the word carcinoma.
That way, patients are less frightened and less likely to seek what may be unneeded and potentially harmful treatments that can include the surgical removal of the breast.
Although it is clear that some or all of the changes may not happen for years, and that some cancer experts will profoundly disagree, the report from such a prominent group with the clear backing of the National Cancer Institute intensifies and broadens the debate and will probably change the national conversation about cancer, its definition, its treatment, and future research.
“We need a 21st-century definition of cancer instead of a 19th-century definition of cancer, which is what we’ve been using,” said Dr. Otis W. Brawley, the chief medical officer for the American Cancer Society, who was not directly involved in the report.
The impetus behind the call for change is a growing concern among doctors, scientists, and advocates for patients that hundreds of thousands of men and women are undergoing needless and sometimes disfiguring and harmful treatments for premalignant and cancerous lesions that grow so slowly they are unlikely to ever cause harm.
The advent of highly sensitive screening technology in recent years has increased the likelihood of finding these incidentalomas — the name given to incidental findings detected during medical scans that most likely would never cause a problem.
However, once doctors and patients are aware a lesion exists, they typically feel compelled to biopsy, treat, and remove it, often at great physical and psychological pain and risk to the patient."
So is it cancer or not? Or is an incidentaloma?
I think there is some validity to the argument. Medical science has advanced to the extent that a precancerous diagnosis usually is not a deadly diagnosis any more. The conditions can usually be treated and the patient may require additional follow up in the future but can assume they will live a long and healthy life.
I am not trying to minimize the importance of diagnosis and treatment of any of these conditions. But perhaps its time for the words to change.
"In one example, they say that some premalignant conditions, such as one that affects the breast called ductal carcinoma in situ — which many doctors agree is not cancer — should be renamed to exclude the word carcinoma.
That way, patients are less frightened and less likely to seek what may be unneeded and potentially harmful treatments that can include the surgical removal of the breast.
The group, which includes some of the top scientists in cancer research, also suggested that many lesions detected during breast, prostate, thyroid, lung, and other cancer screenings should not be called cancer at all but instead should be reclassified as IDLE conditions, which stands for “indolent lesions of epithelial origin.”
“We need a 21st-century definition of cancer instead of a 19th-century definition of cancer, which is what we’ve been using,” said Dr. Otis W. Brawley, the chief medical officer for the American Cancer Society, who was not directly involved in the report.
The impetus behind the call for change is a growing concern among doctors, scientists, and advocates for patients that hundreds of thousands of men and women are undergoing needless and sometimes disfiguring and harmful treatments for premalignant and cancerous lesions that grow so slowly they are unlikely to ever cause harm.
The advent of highly sensitive screening technology in recent years has increased the likelihood of finding these incidentalomas — the name given to incidental findings detected during medical scans that most likely would never cause a problem.
However, once doctors and patients are aware a lesion exists, they typically feel compelled to biopsy, treat, and remove it, often at great physical and psychological pain and risk to the patient."
So is it cancer or not? Or is an incidentaloma?
I think there is some validity to the argument. Medical science has advanced to the extent that a precancerous diagnosis usually is not a deadly diagnosis any more. The conditions can usually be treated and the patient may require additional follow up in the future but can assume they will live a long and healthy life.
I am not trying to minimize the importance of diagnosis and treatment of any of these conditions. But perhaps its time for the words to change.
Optimism in the face of cancer
When one is diagnosed with cancer, all sorts of things flash in our brains - rail thin bald people, iv poles, scars, doctors, hospitals, hospices. All sorts of things loom in our future - medical tests, things that pinch, chemotherapy, and ugly hospital gowns with a draft in the back.
One of the key players in any cancer journey is the oncologist. Oncologists provide hope, direction, leadership and optimism. They offer treatment protocols to heal us, they provide solutions to treatment side effects, they provide answers to our questions.
They do offer optimism as I said. I read this article on an oncologist and his views of optimism a few days ago and have been thinking about it, mulling it through my brain.
What is optimism for an oncologist faced with a patient with advanced cancer? A few weeks/months of symptom free existence? They know what they are providing - a chance at a little longer.
As a patient our desire for optimism is a little different. I know someone who is a stage IV ovarian cancer person of over 30 years and still going strong. I had another friend who was a stage IV breast cancer person for more than 17 years. Those are the optimistic numbers a patient might take comfort in. But is that what an oncologist offers us? Not really. They measure time in weeks and months, taken in stages until the next round of tests to check for progression.
Is stage IV cancer existence a happy one? Not really. From what I have seen is it is a long adventure in the chemo for life program with changing treatment protocols, CT scans with no concern for lifetime exposure rates, and regular blood work done on burnt out blood vessels.
A patient upon first cancer diagnosis gradually learns to be as optimistic as they can based on their own medical journey. Some are much easier than others. But an optimistic oncologist always provides the guidance. We might just wish they too were looking at years instead of weeks and months.
One of the key players in any cancer journey is the oncologist. Oncologists provide hope, direction, leadership and optimism. They offer treatment protocols to heal us, they provide solutions to treatment side effects, they provide answers to our questions.
They do offer optimism as I said. I read this article on an oncologist and his views of optimism a few days ago and have been thinking about it, mulling it through my brain.
What is optimism for an oncologist faced with a patient with advanced cancer? A few weeks/months of symptom free existence? They know what they are providing - a chance at a little longer.
As a patient our desire for optimism is a little different. I know someone who is a stage IV ovarian cancer person of over 30 years and still going strong. I had another friend who was a stage IV breast cancer person for more than 17 years. Those are the optimistic numbers a patient might take comfort in. But is that what an oncologist offers us? Not really. They measure time in weeks and months, taken in stages until the next round of tests to check for progression.
Is stage IV cancer existence a happy one? Not really. From what I have seen is it is a long adventure in the chemo for life program with changing treatment protocols, CT scans with no concern for lifetime exposure rates, and regular blood work done on burnt out blood vessels.
A patient upon first cancer diagnosis gradually learns to be as optimistic as they can based on their own medical journey. Some are much easier than others. But an optimistic oncologist always provides the guidance. We might just wish they too were looking at years instead of weeks and months.
The other half of having cancer
I have touched upon this before but the other half of having cancer, or any ailment, is the impact on the patient's partner or spouse. Somehow that gets skipped. The spouse sometimes becomes the silent partner without support in a cancer journey.
I know dozens of people with cancer and other ailments - either in person or online - and each handle it differently.
Since we got married eight years ago, I have had five surgeries, numerous procedures, and other medical adventures and been diagnosed with breast cancer, rheumatoid arthritis, and fibromyalgia as well as degenerating disks, gall stones, and I can't remember everything else.
My husband comes with me on all important doctor appointments - he is allowed to see everything but a pelvic exam and the scale when it shows my weight. (The first has never been an issue and the second he is always told to turn away or close his eyes and the nurses write it down without saying a thing.)
I wanted him at the 'bad' appointments because I wanted support from him and also felt that he should be involved as they were going to have a lot of impact on our lives so he should be able to hear whats going on and ask his own questions.
Even now that my doctor appointments are not dealing with cancer treatment, I still call him immediately after every one to share any news about my health.
When he had his own cancer issues a few years ago, I went with him on all his appointments to hear what the doctor has to say and make sure his questions got answered. I needed to be involved so I could support him as best I could.
But then I have friends who go to all their cancer appointments by themselves and chose not to involve any family members in their treatment. I have friends who drove themselves to all their chemo infusions. I always needed a nap after mine and wasn't sure I could drive myself home.
I know there is a line between sucking up all their time and no one wants to go to as many doctor appointments as I have (a minimum of 50/year - really) but sometimes I think you need the support.
Studies have shown that husbands feel isolated when their wives have breast cancer - they don't get the support they need. A cancer diagnosis is not a one person adventure, it involves the patients family as well.
Doctors are happy to include spouses in medical discussions. I think a spouse who is involved will feel less isolation as they become part of the cancer journey as opposed to a bystander.
I know dozens of people with cancer and other ailments - either in person or online - and each handle it differently.
Since we got married eight years ago, I have had five surgeries, numerous procedures, and other medical adventures and been diagnosed with breast cancer, rheumatoid arthritis, and fibromyalgia as well as degenerating disks, gall stones, and I can't remember everything else.
My husband comes with me on all important doctor appointments - he is allowed to see everything but a pelvic exam and the scale when it shows my weight. (The first has never been an issue and the second he is always told to turn away or close his eyes and the nurses write it down without saying a thing.)
I wanted him at the 'bad' appointments because I wanted support from him and also felt that he should be involved as they were going to have a lot of impact on our lives so he should be able to hear whats going on and ask his own questions.
Even now that my doctor appointments are not dealing with cancer treatment, I still call him immediately after every one to share any news about my health.
When he had his own cancer issues a few years ago, I went with him on all his appointments to hear what the doctor has to say and make sure his questions got answered. I needed to be involved so I could support him as best I could.
But then I have friends who go to all their cancer appointments by themselves and chose not to involve any family members in their treatment. I have friends who drove themselves to all their chemo infusions. I always needed a nap after mine and wasn't sure I could drive myself home.
I know there is a line between sucking up all their time and no one wants to go to as many doctor appointments as I have (a minimum of 50/year - really) but sometimes I think you need the support.
Studies have shown that husbands feel isolated when their wives have breast cancer - they don't get the support they need. A cancer diagnosis is not a one person adventure, it involves the patients family as well.
Doctors are happy to include spouses in medical discussions. I think a spouse who is involved will feel less isolation as they become part of the cancer journey as opposed to a bystander.
Cancer is cancer
This is a very interesting video on thyroid cancer and the stigma of having it.
Here's the premise: You are told you have thyroid cancer, you are told its the 'good' cancer and you will be fine. Then it turns nasty, and you feel like you were mislead and go through the whole cancer roller coaster. And you are being treated by an endocrinologist who may not have all the psycho-social support services available in the oncology department. Its the crazy cancer roller coaster.
Let's take it another step.
You are diagnosed with any type of cancer, early stage, and your doctors think you will be okay. You are on the cancer roller coaster but doing fine because treatment wasn't too bad, you did okay and you are doing fine. Then whammo out of the blue, your easy cancer became a not so good cancer and you are not doing well. The crazy cancer roller coaster is hitting you but much worse.
Society is training us that breast cancer, thyroid cancer or whatever are cancers that you get, are treated and move on. But cancer is cancer and that should never be the case. Society is wrong in this case.
The breast cancer treatment gap
Technology is advancing along in the diagnosis and treatment of breast cancer. We now have a genetic test which allows patients to find out if they have a genetic mutation which puts them at high risk of the disease. But then we have the gap - if you have the mutation you get two options:
Neither of those are particularly good are they? If you have a mastectomy and an oophorectomy (ovary removal) as Angelina Jolie is, you put yourself instantly into forced menopause at a young age which causes its own set of problems. If you opt for constant monitoring, it can be expensive, stressful, and cause a huge emotional toll on your life.
We need something that breaches this gap that gives women the option to keep their body parts and not have to spend their life in constant monitoring.
Never mind that Myriad Genetics, which is the sole provider of the test because they patented the BRCA genes (until we hear about the Supreme Court ruling) and charges $3000 for each one.
While we have lots of progress, the gaps are becoming more clearly defined. Now its time to focus on the gaps.
- cut off healthy body parts essentialy
- or spend the rest of your life in constant monitoring through mammograms and MRIs.
Neither of those are particularly good are they? If you have a mastectomy and an oophorectomy (ovary removal) as Angelina Jolie is, you put yourself instantly into forced menopause at a young age which causes its own set of problems. If you opt for constant monitoring, it can be expensive, stressful, and cause a huge emotional toll on your life.
We need something that breaches this gap that gives women the option to keep their body parts and not have to spend their life in constant monitoring.
Never mind that Myriad Genetics, which is the sole provider of the test because they patented the BRCA genes (until we hear about the Supreme Court ruling) and charges $3000 for each one.
While we have lots of progress, the gaps are becoming more clearly defined. Now its time to focus on the gaps.
You cant tell other people how to feel
You can't tell someone else how to feel about anything, especially about a cancer diagnosis. In this morning's Ask Amy column and woman writes in about how her mother seems to be upset and feels that she is dying. The writer was treated for cancer and is currently fine. The mother is symptomatic of cancer, not yet diagnosed and thinks she is going to die, taking a woe is me attitude.
The writer is concerned that her mother's attitude is so bad and that she needs to change it.
Hello! Her mother isn't feeling well. She is symptomatic of something, may be not even cancer, but clearly not feeling well.
I think that the writer (daughter) needs to take a step back here and let her mother cope and more importantly get her to a doctor asap.
It might or might not be cancer so she is sitting in this state of limbo trying to figure out what is going on with her life. The waiting, I know personally, is awful. The daughter is trying to make her mother feel something she is not. Back off.
The writer is concerned that her mother's attitude is so bad and that she needs to change it.
Hello! Her mother isn't feeling well. She is symptomatic of something, may be not even cancer, but clearly not feeling well.
I think that the writer (daughter) needs to take a step back here and let her mother cope and more importantly get her to a doctor asap.
It might or might not be cancer so she is sitting in this state of limbo trying to figure out what is going on with her life. The waiting, I know personally, is awful. The daughter is trying to make her mother feel something she is not. Back off.
How we cope
I have always said that unless you have walked the walk, you can't talk the talk. If you haven't had cancer, you have no idea what it is like - you can't shouldn't even pretend to get it. But those of us who have been there know.
So that opens us up to all the emotions of the cancer diagnosis and treatment process again and again as we hear stories about others.
A friend called me yesterday because a friend of hers who just gave birth to a new baby two weeks ago, was just diagnosed at stage IV for a recurrence of a rare childhood cancer. There aren't a lot of treatment options - either chemo or surgery - available for her. She doesn't have a full diagnosis/prognosis yet but it doesn't look good. Its a very sad story that she will probably not be around to raise her child.
So those of us who have walked the walk have a good sense of what the treatment will be like. It won't be fun. It doesn't sound like it will have a good outcome either.
But those of us who have walked the walk at every story we hear our emotions take over again and open up and send us down that road again. Now that we have learned to cope with our cancer story, we then need to learn to cope with someone else's story again. Its an ongoing process.
My therapist tells me I am in a chronic state of mourning because of my continually downward spiraling health issues. But as I pointed out to my friend yesterday its like with each story we hear, we need to go through the five stages of coping/grieving/mourning again.
Is it easier each time we go through this? Not really. I think we just adapt our coping mechanisms a little more.
So that opens us up to all the emotions of the cancer diagnosis and treatment process again and again as we hear stories about others.
A friend called me yesterday because a friend of hers who just gave birth to a new baby two weeks ago, was just diagnosed at stage IV for a recurrence of a rare childhood cancer. There aren't a lot of treatment options - either chemo or surgery - available for her. She doesn't have a full diagnosis/prognosis yet but it doesn't look good. Its a very sad story that she will probably not be around to raise her child.
So those of us who have walked the walk have a good sense of what the treatment will be like. It won't be fun. It doesn't sound like it will have a good outcome either.
But those of us who have walked the walk at every story we hear our emotions take over again and open up and send us down that road again. Now that we have learned to cope with our cancer story, we then need to learn to cope with someone else's story again. Its an ongoing process.
My therapist tells me I am in a chronic state of mourning because of my continually downward spiraling health issues. But as I pointed out to my friend yesterday its like with each story we hear, we need to go through the five stages of coping/grieving/mourning again.
Is it easier each time we go through this? Not really. I think we just adapt our coping mechanisms a little more.
If you don't have your health, what have you got?
Some of us look at the rich and famous, the Hollywood stars, and others and think they have it all. Beauty, riches, and fame seem to be everything.
But they are wrong. If you don't have your health, what do you have? Sofia Vergara had thyroid cancer 12 years ago. A recent article about her provides her reactions to thyroid cancer diagnosis and treatment.
"She said that you realize that no matter how much beauty, money, and success you have, if you don't have health, you have nothing, because you can't do anything."
Personally I think I am as healthy as a horse on the way to the glue factory.
It only took Sofia 12 years from her cancer diagnosis to be able to sum this up in one sentence and she may have gotten there sooner. I am a little slow. It probably took me a long longer to be able to react to a cancer diagnosis in the same way.
But if you think about it, one of our fundamental reactions to a cancer diagnosis, I think, is that we have lost our health because we are now told we have a potentially terminal ailment. So what else do we have? That is where we need to figure out so we can adapt and get back to living.
But they are wrong. If you don't have your health, what do you have? Sofia Vergara had thyroid cancer 12 years ago. A recent article about her provides her reactions to thyroid cancer diagnosis and treatment.
"She said that you realize that no matter how much beauty, money, and success you have, if you don't have health, you have nothing, because you can't do anything."
Personally I think I am as healthy as a horse on the way to the glue factory.
It only took Sofia 12 years from her cancer diagnosis to be able to sum this up in one sentence and she may have gotten there sooner. I am a little slow. It probably took me a long longer to be able to react to a cancer diagnosis in the same way.
But if you think about it, one of our fundamental reactions to a cancer diagnosis, I think, is that we have lost our health because we are now told we have a potentially terminal ailment. So what else do we have? That is where we need to figure out so we can adapt and get back to living.
Misconceptions about breast cancer risk
Last night we had dinner with a friend who's mother had breast cancer more than 15 years ago. She was talking about her concern about getting breast cancer. I think both her grandmothers and a couple aunts had breast cancer. Several of them had bilateral mastectomies. This is dating back decades to the 1970s and earlier.
She has not been tested for the BRCA genes because it would require her mother to be tested and she didn't want to put her mother through that. That was probably 15 years ago and she hadn't asked since. She was very concerned and sounded like she was sure she would get breast cancer.
I asked her a couple questions. What stage cancer did all her relatives have? She had no idea. She thought they were relatively advanced because of the bilateral mastectomies. But those were done in the 1970s when more radical surgery prevailed.
I also said that the BRCA genes only account for 5-10% of all breast cancers. But I did suggest that even though she was told years ago that she would have to have her mother get tested for the BRCA gene first, maybe times had changed and she could be tested now. She is going to ask her doctor about that now.
Her other comment was that there is cancer on both sides of her family and both her parents had cancer which further reinforced her thought that she would definitely get cancer.
I was somewhat surprised at her misconceptions that she was sure she would get cancer because of her family history. Yes she is probably at higher risk than the average population of getting cancer. But there is no reason to think she definitely will get cancer. And with regular mammograms and annual physicals, anything would probably be caught early.
I think this is a case of her mind getting ahead of reality. You start thinking well everyone else got cancer so I will too and I'll die some kind of horrible death as a result. I hope I was able to reassure her that she is doing the right thing and cancer is not a certainty for her.
She has not been tested for the BRCA genes because it would require her mother to be tested and she didn't want to put her mother through that. That was probably 15 years ago and she hadn't asked since. She was very concerned and sounded like she was sure she would get breast cancer.
I asked her a couple questions. What stage cancer did all her relatives have? She had no idea. She thought they were relatively advanced because of the bilateral mastectomies. But those were done in the 1970s when more radical surgery prevailed.
I also said that the BRCA genes only account for 5-10% of all breast cancers. But I did suggest that even though she was told years ago that she would have to have her mother get tested for the BRCA gene first, maybe times had changed and she could be tested now. She is going to ask her doctor about that now.
Her other comment was that there is cancer on both sides of her family and both her parents had cancer which further reinforced her thought that she would definitely get cancer.
I was somewhat surprised at her misconceptions that she was sure she would get cancer because of her family history. Yes she is probably at higher risk than the average population of getting cancer. But there is no reason to think she definitely will get cancer. And with regular mammograms and annual physicals, anything would probably be caught early.
I think this is a case of her mind getting ahead of reality. You start thinking well everyone else got cancer so I will too and I'll die some kind of horrible death as a result. I hope I was able to reassure her that she is doing the right thing and cancer is not a certainty for her.
PTSD and cancer diagnoses
I honestly do not believe they needed a study for this one but did so now they can say its true. A recent study examined women diagnosed with breast cancer from 2006-2010 and found that 23% reported PTSD symptoms shortly after diagnosis. This rate was higher for Black, Asian or under 50 women and apparently the symptoms decline over time.
My comments (because I had to have an opinion) are that:
My comments (because I had to have an opinion) are that:
- I do not think it is isolated to breast cancer patients. I think its probably across all cancer diagnoses and they just have not done a study yet to prove it.
- I think the people who say they did not have PTSD were still stressed. A cancer diagnosis is not something you can bury inside you and not react.
- Although the symptoms may fade over time, the person with the diagnosis has to learn to cope with the ongoing fears of cancer's return for life.
Avoidance mode
Today I am in avoidance mode. I have one of 'those' appointments today. I don't feel like talking about it, I'm a tiny bit stressed so I am going to the gym. Depending on the result, I may talk more about it later.
I'm also avoiding thinking about the stupid snowstorm on Friday might ruin my social life on Saturday. Grr.
Its a bunch of numbers
With a cancer diagnosis you get a bunch of numbers. Prognosis, cancer markers, statistics, blood counts, and more. The numbers can tell us good things and bad things. We can read bad things into good numbers and good things into bad numbers. We can be told that we were too young to get that or too old to get this. We can let the numbers scare the crap out of us.
Or we can let them just be numbers.
I am not normal. I got thyroid cancer when it was very rare - approximately 10,000 cases annually. I got breast cancer when I was younger than expected. I have Rheumatoid Arthritis which was not expected - even with a family history of it. According to the numbers I should be more likely to get a different autoimmune ailment.
I have friends who got early stage cancer diagnoses with relatively rosy prognoses who are no longer with us. I have a friend with an ovarian cancer stage IV diagnosis who is still with us and doing well more than three decades later. I have friends who are still here after stage IV diagnosis who go to treatment, get periodic CT and PET scans and are doing well. I have other stage IV friends who are doing just fine and are not in treatment. I have many friends years and decades after a cancer diagnosis who are still doing fine.
I met another woman online this morning when I read her story about how she shouldn't be here either if she listened to the numbers. Our doctors can only tell us the numbers, but they can't tell us our lives.
Or we can let them just be numbers.
I am not normal. I got thyroid cancer when it was very rare - approximately 10,000 cases annually. I got breast cancer when I was younger than expected. I have Rheumatoid Arthritis which was not expected - even with a family history of it. According to the numbers I should be more likely to get a different autoimmune ailment.
I have friends who got early stage cancer diagnoses with relatively rosy prognoses who are no longer with us. I have a friend with an ovarian cancer stage IV diagnosis who is still with us and doing well more than three decades later. I have friends who are still here after stage IV diagnosis who go to treatment, get periodic CT and PET scans and are doing well. I have other stage IV friends who are doing just fine and are not in treatment. I have many friends years and decades after a cancer diagnosis who are still doing fine.
I met another woman online this morning when I read her story about how she shouldn't be here either if she listened to the numbers. Our doctors can only tell us the numbers, but they can't tell us our lives.
Hindsight is always 20/20
So now that you have been down the cancer road once, what have you learned? What would you do differently if there was a 'next time' (if you were so 'lucky')?
I am sure you are saying all sorts of things to yourself about how you would do more research, find more specialists, get a third opinion, make sure you dotted your "i's" and crossed your "t's" and had a bit more style while in chemo. There would be so many things you would do differently.
This man had cancer and then twenty years later thought he might have it again. He did learn from the first round but it was still traumatizing.
I can tell you at the second diagnosis, it is still just as shocking, upsetting, scary, and traumatizing as it was the first time. You might be slightly better prepared to act to your hindsight but you still have to get past that trauma.
I did make some resolutions - one that cancer wasn't going to suck the life out of me for a second time. I did start this little blog and I have been more proactive in my health care. But still I face the same fears and anxieties.
A few years after my breast cancer diagnosis my husband had a little brush with colorectal cancer. I remember sitting in the doctor's office with him. My husband had already been in the other chair where he was the caregiver there for support to take notes and ask questions but he was now the one receiving and digesting the information about his body. The doctor was trying to form into words what he needed to tell us about surgery, treatment, and options. I spoke up and said I have had cancer twice so we are already familiar with a lot of this. The doctor relaxed a little and started giving us information and options.
Without cancer twice, would I have spoken up? Probably not. I would have been the little blob in fear with all the stress. But I had learned to ask questions and not accept medical advice from only one source.
Hindsight is 20/20 and we can paper our walls with "woulda, shoulda, coulda's" but we hope we learn from our life experiences so we can have a better experience the next time.
I am sure you are saying all sorts of things to yourself about how you would do more research, find more specialists, get a third opinion, make sure you dotted your "i's" and crossed your "t's" and had a bit more style while in chemo. There would be so many things you would do differently.
This man had cancer and then twenty years later thought he might have it again. He did learn from the first round but it was still traumatizing.
I can tell you at the second diagnosis, it is still just as shocking, upsetting, scary, and traumatizing as it was the first time. You might be slightly better prepared to act to your hindsight but you still have to get past that trauma.
I did make some resolutions - one that cancer wasn't going to suck the life out of me for a second time. I did start this little blog and I have been more proactive in my health care. But still I face the same fears and anxieties.
A few years after my breast cancer diagnosis my husband had a little brush with colorectal cancer. I remember sitting in the doctor's office with him. My husband had already been in the other chair where he was the caregiver there for support to take notes and ask questions but he was now the one receiving and digesting the information about his body. The doctor was trying to form into words what he needed to tell us about surgery, treatment, and options. I spoke up and said I have had cancer twice so we are already familiar with a lot of this. The doctor relaxed a little and started giving us information and options.
Without cancer twice, would I have spoken up? Probably not. I would have been the little blob in fear with all the stress. But I had learned to ask questions and not accept medical advice from only one source.
Hindsight is 20/20 and we can paper our walls with "woulda, shoulda, coulda's" but we hope we learn from our life experiences so we can have a better experience the next time.
A New Tool for Thyroid Cancer Diagnosis
Thyroid cancer has the fastest growing rate of incidence in the US of any cancers. The standard procedure to diagnose thyroid cancer is the doctor presses on the patients throat and asks them to swallow - this is to feel for any nodules or lumps. Other symptoms may appear such as a swallowing problems, a sore throat or speaking problems.
If a problem is suspected, the next usual step is an ultrasound to see if a determination can be made. 1/3 of all ultrasounds are inconclusive - meaning a determination can't be made to determine malignancy.
The next step is a thyroidectomy where the patient if benign will spend their life on synthetic thyroid hormone - which is not quite the real thing. The problem arises in that for those with inconclusive ultrasounds only 25% of them are diagnosed with cancer at their thryoidectomy. Or 75% have unneeded surgery.
But the new hero comes riding in in the form of a new gene test which has a 90% success rate for determining if thyroid cancer or not.
This means patients no longer have unneeded surgery which puts them into a life with out a thyroid which is fairly significant issue. And it reduces costs for for the patient and the medical care.
Okay some good progress for cynical me.
If a problem is suspected, the next usual step is an ultrasound to see if a determination can be made. 1/3 of all ultrasounds are inconclusive - meaning a determination can't be made to determine malignancy.
The next step is a thyroidectomy where the patient if benign will spend their life on synthetic thyroid hormone - which is not quite the real thing. The problem arises in that for those with inconclusive ultrasounds only 25% of them are diagnosed with cancer at their thryoidectomy. Or 75% have unneeded surgery.
But the new hero comes riding in in the form of a new gene test which has a 90% success rate for determining if thyroid cancer or not.
This means patients no longer have unneeded surgery which puts them into a life with out a thyroid which is fairly significant issue. And it reduces costs for for the patient and the medical care.
Okay some good progress for cynical me.
Humor and cancer
I know Lorri who lost a leg to cancer and does a stand up routine about the shark.... Because its funnier than cancer.
I know lots of women with breast cancer who have a group on Facebook called 'Humor is the best medicine' and are always looking for the bright side of things.
This morning a Google alert brought me a link to a Huffington Post Blog about a new cartoonist, Kate Matthews, who has just published "The Little Pink Book of (Mostly) Cancer Cartoons (In Color)!". So of course I had to do some research (even though its early in the day) and found some more info on her, including the fact that she is working on a second book.
Here are some of my first favorites. I am sure I will find more...
If you aren't laughing or at least smiling, you might need to think about therapy.
Cancer five times
As a cancer patient, what is the worst thing we fear? Being told we have a recurrence or another cancer. So what if between the ages of 29 and 40 something you were told you had cancer five different times? Meet Chef Eric LeVine. He has done this.
I saw him on the Food Network's Chopped a while back and heard him say he had cancer five times. I thought it was significant at the time but not how significant. If you think about it, how many people do you know that have had cancer five times? I spoke at a local senior center last year and a gentleman who had to be in his mid 80's said he had had cancer five times. But he was probably twice the age of Chef LeVine. Its not a common thing.
So Chef LeVine has turned it around and tries to pay it forward by helping family members cope.
"So I realized that the best way for me to use this knowledge - my experience - was to pay it forward. Not with cancer patients, but with their families - teaching them how they can help their family member, the cancer patient."
He talks about people who call constantly 'how are you doing?' and what a drag it is for the patient. It is a constant reminder about cancer and not helping you avoid thinking about it. (Its almost as bad as the people who ask you why you aren't getting the same treatment as their cousin's neighbor's dog walker's hair dresser's uncle who had a different cancer 20 years ago.)
One recommendation I do disagree with him is yes talk to the cancer patient about the crap going on in your life. I would much rather hear someone tell me about their witchy boss, or idiot co-worker, or evil in laws, or annoying children/neighbors, etc than to have them ask me how I am feeling.
However he has been through the cancer roller coaster five times and is still here. I wouldn't want to be in his shoes but he is still here which is the really important part. When I am next in New Jersey, I will make an effort to eat in his restaurant and maybe even meet him.
The 'Good' Cancer
Here we go again. Another Hollywood star with cancer. Let the myths and hype begin.
First we have CNN talking about five things you need to know about thyroid cancer:
Yahoo says that Brooke Burke has a 'good' cancer as well. and they go on to add:
"The thyroid is a butterfly-shaped gland located at the base of the neck, just under your Adam’s apple. It’s responsible for producing hormones that do a variety of functions in the body including regulate blood pressure, body temperature, and weight."
So now blood pressure, body temperature, and weight become much harder to control without your 'dear little thyroid' or DLT. Now add to that the fact that it can recur 30-45 years later and requires a lifetime of vigilance.
After removal of the DLT, there are some people:
First we have CNN talking about five things you need to know about thyroid cancer:
- Thyroid cancer strikes more women than men. We can't dispute that one.
- Its a young person diseases - striking more and more under 55 - but actually becoming more common in teens and twenties.
- Its not an obvious cancer. It can go undetected for a long time. But since its slow growing, late detection is not necessarily fatal.
- There are more than twice as many cases as there were 30 years ago.
- It has a high survival rate so its a 'good' cancer.
Yahoo says that Brooke Burke has a 'good' cancer as well. and they go on to add:
"The thyroid is a butterfly-shaped gland located at the base of the neck, just under your Adam’s apple. It’s responsible for producing hormones that do a variety of functions in the body including regulate blood pressure, body temperature, and weight."
So now blood pressure, body temperature, and weight become much harder to control without your 'dear little thyroid' or DLT. Now add to that the fact that it can recur 30-45 years later and requires a lifetime of vigilance.
After removal of the DLT, there are some people:
- who never can balance their thyroid levels and have to have constant testing and retesting to see if they can keep it under control
- who experience of life time of complications
Conversations with my doctor
Today's topic with Wego Health Blog month is a choice between something about learning something or on a conversation with my doctor. Its too early in the day (and I'm too stressed) to think about learning something and I have many doctor appointments that I could write about.
There are two doctor conversations to write about. The first one happened in August 1981 when I was in post op after having my thyroid removed. I was dazed from all the sedation but the surgeon came in and sat down next to me and told me that I had thyroid cancer. That's all that I remember of the conversation but those words were forever etched in my memory.
The second conversation happened May 30, 2007 when my surgeon called after my biopsy to tell me that I had breast cancer. At that point I had been living in the 'la la land' of '80% of all tumors are benign' and assumed it was a nothing as I had a previous benign tumor back in the 1980s. The doctor called me at home and I was sitting on our bed holding my husband's hand. The surgeon again was reassuring and answered a few questions and gave me the next steps of a lumpectomy with sentinel node biopsy followed by an axillary node dissection if needed. We had already discussed these options in his office.This conversation is no less etched in my mind.
What was the impact of these two conversations on my life? A medical roller coaster with no end.
But what doesn't kill you makes you stronger. As a result of the conversations my life changed irrevocably and I have come out stronger, ready to face these diagnoses and others more prepared. Now I know what to do with a new ailment - research, questions, education, treatment, and more. And I'm still here.
There are two doctor conversations to write about. The first one happened in August 1981 when I was in post op after having my thyroid removed. I was dazed from all the sedation but the surgeon came in and sat down next to me and told me that I had thyroid cancer. That's all that I remember of the conversation but those words were forever etched in my memory.
The second conversation happened May 30, 2007 when my surgeon called after my biopsy to tell me that I had breast cancer. At that point I had been living in the 'la la land' of '80% of all tumors are benign' and assumed it was a nothing as I had a previous benign tumor back in the 1980s. The doctor called me at home and I was sitting on our bed holding my husband's hand. The surgeon again was reassuring and answered a few questions and gave me the next steps of a lumpectomy with sentinel node biopsy followed by an axillary node dissection if needed. We had already discussed these options in his office.This conversation is no less etched in my mind.
What was the impact of these two conversations on my life? A medical roller coaster with no end.
But what doesn't kill you makes you stronger. As a result of the conversations my life changed irrevocably and I have come out stronger, ready to face these diagnoses and others more prepared. Now I know what to do with a new ailment - research, questions, education, treatment, and more. And I'm still here.
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