It doesn't matter how many years out it is but a visit to the oncologist always is uncomfortable. Its unsettling. Its alarming. Its distressing. Its ominous. I can't come up with enough words to describe it. And its today.
I had my annual mammogram back in July and then saw my surgeon. Technically, I am supposed to be followed by my breast surgeon for life after treatment ends. But his office was difficult to schedule with so after a few years, I dumped him. I also dumped my rads onc a few years back. She was pretty useless too. She used to tell me things like I should stop working so my husband could support me since I had had cancer. Not good medical advice.
I was originally supposed to see my oncologist after my mammogram but the surgeon took over. I had a momentary cancer freakout last winter and ended up at my surgeon's office. He told me his office would now start following me after my mammograms and had an appointment with his office scheduled for the same day. So my oncologist asked me if I wanted to see her office on a different date - to spread out cancer follow up appropriately.
Anyway, so I get to go see my onc's NP today. I am still on (or back on) femara for another couple of years. So today I am a little unsettled, alarmed, distressed, etc. You never know when you see an oncologist what they might find....
Damn.
Showing posts with label oncologist. Show all posts
Showing posts with label oncologist. Show all posts
Monday, September 11, 2017
Wednesday, January 4, 2017
A Post for Every Oncology Medical Practitioner
I have often spoke about how nurses, doctors and other medical practitioners just don't ''get it' because they have never been through it themselves. They also don't understand what they do not understand, because they haven't been there.It has been my greatest desire to have medical practitioners who have had the ailment they are treating. Especially oncology medical practitioners.
An oncology nurse recently wrote an apology letter to all her patients. She had not 'gotten it' in all her dealings with patients in her care. Now she knows what she did not get because she has now been diagnosed with a stage III colon cancer. This unfortunate diagnosis now helps her in her dealings with patients. Her letter begins with the paragraphs below. But please go read the entire letter yourself.
"Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.
This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.
I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it."
Once you read the letter, please share it with your medical professionals. We can help educate our medical providers and perhaps this would help them understand our side.
An oncology nurse recently wrote an apology letter to all her patients. She had not 'gotten it' in all her dealings with patients in her care. Now she knows what she did not get because she has now been diagnosed with a stage III colon cancer. This unfortunate diagnosis now helps her in her dealings with patients. Her letter begins with the paragraphs below. But please go read the entire letter yourself.
"Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.
This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.
I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it."
Once you read the letter, please share it with your medical professionals. We can help educate our medical providers and perhaps this would help them understand our side.
Tuesday, July 16, 2013
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.
Monday, July 8, 2013
Carpe Diem vs. The Future
An oncologist advises his stage four patients to 'Carpe Diem' or 'Seize the Day'. This is good advice for anyone: don't just sit there, do something. Or get off your butt or any of a multitude of other definitions.
I like an optimistic oncologist. I am going to see mine today and don't expect any real doom and gloom. Optimism is always good but the patient's thoughts need to be considered as well. The oncologist thinks the patient is doing well as they cope with cancer treatment but at stage IV its not a disease that is going to go away and will in fact eventually probably do them in. The future takes a different tone.
An early bird does catch the worm because life isn't coming to you if you don't make the most of it. I try to make the most of my life. I really do. I mean sometimes I can be the biggest procrastinator and firmly believe the road to hell is paved with good intentions. But I do try to take advantage of life and do what makes me feel best.
Then throw in a stage four, or any cancer diagnosis, and the future always looks a little bit different than before. And the silly questions, if I have cancer why am I saving for retirement? Or will I be here to trade in my suburban sedan in a few more years, or should I start using it for off road adventures? Is it time to write and complete my bucket list?
Once you receive that cancer diagnosis, you get an oncologist. Once you meet your oncologist, they need to be optimistic. So carpe diem. And look to the future.
I like an optimistic oncologist. I am going to see mine today and don't expect any real doom and gloom. Optimism is always good but the patient's thoughts need to be considered as well. The oncologist thinks the patient is doing well as they cope with cancer treatment but at stage IV its not a disease that is going to go away and will in fact eventually probably do them in. The future takes a different tone.
An early bird does catch the worm because life isn't coming to you if you don't make the most of it. I try to make the most of my life. I really do. I mean sometimes I can be the biggest procrastinator and firmly believe the road to hell is paved with good intentions. But I do try to take advantage of life and do what makes me feel best.
Then throw in a stage four, or any cancer diagnosis, and the future always looks a little bit different than before. And the silly questions, if I have cancer why am I saving for retirement? Or will I be here to trade in my suburban sedan in a few more years, or should I start using it for off road adventures? Is it time to write and complete my bucket list?
Once you receive that cancer diagnosis, you get an oncologist. Once you meet your oncologist, they need to be optimistic. So carpe diem. And look to the future.
Monday, May 13, 2013
Words from an oncologist
A few months ago, an oncologist wrote a "Letter To A Young Smoker From An Oncologist". I found it very touching and meant to blog about it at the time - but chemo brain made me forget. It is a great article to share with someone who smokes and knows they shouldn't. Maybe it will help them quit.
Then the other day I found a sequel to the first letter entitled "This Is My Last Day On Earth" also written by the same oncologist, Dr. Craig Hildreth, MD. This is written from the patients point of view on dying of cancer and the issues that supported them and what they fought to the end.
The patient writes special notes to:
I hope there are lessons here for all.
Then the other day I found a sequel to the first letter entitled "This Is My Last Day On Earth" also written by the same oncologist, Dr. Craig Hildreth, MD. This is written from the patients point of view on dying of cancer and the issues that supported them and what they fought to the end.
The patient writes special notes to:
- The oncologist with thanks for the compassion and caring
- The insurnace company with outrage for refusing medicaiton
- The nurses for their care
- The loved ones with regrets
- And finally to himself.
I hope there are lessons here for all.
Sunday, April 28, 2013
Meet my oncologist and her cookbook
When I was first diagnosed with breast cancer I had an oncologist who I really liked. He was nice and would explain numbers and statistics to me and give me detailed explanations on treatment options and why he chose one over the other.
At the end of my active treatment phase, he left. He was not given permission for this and I was upset. One big trauma point for cancer patients is when the active treatment portion ends and the come back and see us in six months starts. They go from caring about every sniffle to 'see-ya!'.
I was pretty stressed about the change and did not know what to expect from my new oncologist. But I was pleasantly surprised to find out how nice, compassionate and caring my new oncologist was. Over the past five years I have gotten to know her more. I have seen her speak at events as well as met with her individually.
Now I learned something more about her. She, along with other doctors, has written a cookbook for cancer patients. Now I have to get a copy of it. It is a book for people in active treatment. Its not that I am planning to go back into active treatment but I am a cookbook junkie and I am sure it will be full of good, healthy recipes.
If you are looking for a new oncologist in the Boston area, I do recommend her.
At the end of my active treatment phase, he left. He was not given permission for this and I was upset. One big trauma point for cancer patients is when the active treatment portion ends and the come back and see us in six months starts. They go from caring about every sniffle to 'see-ya!'.
I was pretty stressed about the change and did not know what to expect from my new oncologist. But I was pleasantly surprised to find out how nice, compassionate and caring my new oncologist was. Over the past five years I have gotten to know her more. I have seen her speak at events as well as met with her individually.
Now I learned something more about her. She, along with other doctors, has written a cookbook for cancer patients. Now I have to get a copy of it. It is a book for people in active treatment. Its not that I am planning to go back into active treatment but I am a cookbook junkie and I am sure it will be full of good, healthy recipes.
If you are looking for a new oncologist in the Boston area, I do recommend her.
Tuesday, February 5, 2013
They really don't know
A few weeks ago I blogged that its really just A Bunch of Numbers on how doctors just give us numbers and that's all they are when we hear statistics about survival, prognosis, age or whatever from our doctors.
Now a doctor says the same thing in this article, A Doctor's Struggle with Numbers.
"Oncologists are notoriously bad at predicting survival, and none of us wants to be known as “the doctor who told me I would be dead by now,” the doctor who made a prediction of imminent demise, sending a family into a terrifying tailspin of goodbyes, only to be proven wrong and subsequently mocked for years to come. One of my patients, upon being told by another doctor that she had two months to live, held Christmas in April so she could spend one last holiday with her grandchildren. She survived to see two more Christmases.
At the same time, we need to be truthful and give guidance to people who want time to prepare, time to write wills and pay off debts, to say goodbyes and to leave instructions, to tie up the loose ends of a life now heavy with meaning.
We try to provide hope, but not false hope.
So we give ranges, starting with the best estimate of survival, because my patients have told me they shut down after they hear the worst estimate. We talk about setting goals, about maximizing quality of life, because we don’t have much leverage with quantity of life. We emphasize spending as much time as possible with family and friends, and as little time as possible with people wearing white coats. We tell them we’re not going to give up if they don’t give up.
But the truth is, we don’t know."
I always appreciate honesty from my doctors. If one of my doctors said to me, instead of giving me a range, something like 'statistics say you have a 10-20% chance of [fill in the blank], but my feeling is that you are on the high end of this due to your medical history'. I would be very appreciative of this little 'translation' or personal input from the doctor.
I can understand the doctor's point. They only have the numbers given to them but quoting statistics learned in medical school does nothing for me. Please add in a little bedside manner for me. Thanks.
Now a doctor says the same thing in this article, A Doctor's Struggle with Numbers.
"Oncologists are notoriously bad at predicting survival, and none of us wants to be known as “the doctor who told me I would be dead by now,” the doctor who made a prediction of imminent demise, sending a family into a terrifying tailspin of goodbyes, only to be proven wrong and subsequently mocked for years to come. One of my patients, upon being told by another doctor that she had two months to live, held Christmas in April so she could spend one last holiday with her grandchildren. She survived to see two more Christmases.
At the same time, we need to be truthful and give guidance to people who want time to prepare, time to write wills and pay off debts, to say goodbyes and to leave instructions, to tie up the loose ends of a life now heavy with meaning.
We try to provide hope, but not false hope.
So we give ranges, starting with the best estimate of survival, because my patients have told me they shut down after they hear the worst estimate. We talk about setting goals, about maximizing quality of life, because we don’t have much leverage with quantity of life. We emphasize spending as much time as possible with family and friends, and as little time as possible with people wearing white coats. We tell them we’re not going to give up if they don’t give up.
But the truth is, we don’t know."
I always appreciate honesty from my doctors. If one of my doctors said to me, instead of giving me a range, something like 'statistics say you have a 10-20% chance of [fill in the blank], but my feeling is that you are on the high end of this due to your medical history'. I would be very appreciative of this little 'translation' or personal input from the doctor.
I can understand the doctor's point. They only have the numbers given to them but quoting statistics learned in medical school does nothing for me. Please add in a little bedside manner for me. Thanks.
Tuesday, January 8, 2013
The cliff moved
Yesterday I had an appointment with my medical oncologist to finalize me going off Femara (after 5 1/2 years of hot flashes - jealous?). I have been debating/stressing/agonizing over this for a few weeks or months. I expected to have the big conversation yesterday.
I was wrong.
My oncologist's two children shared their stomach flu with their mother. Apparently she started vomiting as she drove to the hospital. I saw one of her nurse practitioners who I had never seen before instead.
She was very nice and remarked about my lengthy medical background (it is now at a level where doctors and other medical personnel comment on it) but we had never met before. She said according to the oncologist's notes when I saw her in August she was going to take me off Femara now, in January.
However, there has been new research suggesting longer on Femara might be better except in cases where the side effects are becoming an issue. Like me - my bones are turning into to Swiss cheese due to osteoporosis. But there still might be benefit to staying on Femara for a while.
So we ended the appointment with:
She was going to email the oncologist with a list of questions on whether I should or should not go off Femara, when I should have another bone density scan, and when she wants to follow up with me next. I should hear back by the end of the week.
In the meantime, i is my decision on what to do. I can stay on Femara, stop Femara for good, or stop Femara and then go back on it if she wants me to.
The cliff moved. Damn. I feel like a politician.
I was wrong.
My oncologist's two children shared their stomach flu with their mother. Apparently she started vomiting as she drove to the hospital. I saw one of her nurse practitioners who I had never seen before instead.
She was very nice and remarked about my lengthy medical background (it is now at a level where doctors and other medical personnel comment on it) but we had never met before. She said according to the oncologist's notes when I saw her in August she was going to take me off Femara now, in January.
However, there has been new research suggesting longer on Femara might be better except in cases where the side effects are becoming an issue. Like me - my bones are turning into to Swiss cheese due to osteoporosis. But there still might be benefit to staying on Femara for a while.
So we ended the appointment with:
She was going to email the oncologist with a list of questions on whether I should or should not go off Femara, when I should have another bone density scan, and when she wants to follow up with me next. I should hear back by the end of the week.
In the meantime, i is my decision on what to do. I can stay on Femara, stop Femara for good, or stop Femara and then go back on it if she wants me to.
The cliff moved. Damn. I feel like a politician.
Sunday, December 23, 2012
The femara dilemma
With breast cancer there is diagnosis, stress, depression, surgery, more stress, lymphedema worries, chemotherapy, baldness, neuropathy, weight gain, radiation, peeling skin, fatigue, stress, tamoxifen/aromatase inhibitors, slightly less stress, and through all of this is the ongoing care of your oncologists, surgeons, and other doctors.
I was diagnosed at the end of May 2007. I had surgery in both June and July. I started chemo on August 1 (some dates just stick in your brain) and finished chemo in mid December (where I bought myself an expensive watch as a gift), had a bad MRI and had more surgery (benign but stressful). January 2008 I began radiation and ended at the end of February. In about January sometime I was put on Tamoxifen for 2+ years. June 2010 I switched to Femara for another 2+ years. In September this year when I saw my oncologist she discussed going off Femara at my next visit to her which is next month.
As I filled up my weekly pill boxes I contemplated the fact that I don't have enough Femara tables to get me to my next appointment which is a paltry 15 days away. I have been going back and forth on this one. I know this is an emotional decision. There are no real benefits to taking Femara longer. But this is my last breast cancer treatment - that's it. No more. None. I just go to visits with doctors periodically where they will poke and pry and ask me how I feel (and look for potential rogue cancer cooties).
But emotionally am I ready to 'pull the plug' on all my treatment? I know this is why my medical oncologist brought this up when I met with her last fall. She wanted me to get prepared for this. At first I thought it was no big deal. But it is.
I have been waffling on this and caved in. This morning I placed a mail order to refill my Femara. It should arrive here just before I run out. Which will be a few days before my appointment. I would be happy to take fewer prescriptions but this is the last means of support against the evil cancer cooties.
I think at my appointment I will discuss my emotional attachment to Femara with my oncologist. My inner wimp is prevailing here at this point. Maybe I'll bring my refill with me and turn them over to her if I can't cut myself off.
I was diagnosed at the end of May 2007. I had surgery in both June and July. I started chemo on August 1 (some dates just stick in your brain) and finished chemo in mid December (where I bought myself an expensive watch as a gift), had a bad MRI and had more surgery (benign but stressful). January 2008 I began radiation and ended at the end of February. In about January sometime I was put on Tamoxifen for 2+ years. June 2010 I switched to Femara for another 2+ years. In September this year when I saw my oncologist she discussed going off Femara at my next visit to her which is next month.
As I filled up my weekly pill boxes I contemplated the fact that I don't have enough Femara tables to get me to my next appointment which is a paltry 15 days away. I have been going back and forth on this one. I know this is an emotional decision. There are no real benefits to taking Femara longer. But this is my last breast cancer treatment - that's it. No more. None. I just go to visits with doctors periodically where they will poke and pry and ask me how I feel (and look for potential rogue cancer cooties).
But emotionally am I ready to 'pull the plug' on all my treatment? I know this is why my medical oncologist brought this up when I met with her last fall. She wanted me to get prepared for this. At first I thought it was no big deal. But it is.
I have been waffling on this and caved in. This morning I placed a mail order to refill my Femara. It should arrive here just before I run out. Which will be a few days before my appointment. I would be happy to take fewer prescriptions but this is the last means of support against the evil cancer cooties.
I think at my appointment I will discuss my emotional attachment to Femara with my oncologist. My inner wimp is prevailing here at this point. Maybe I'll bring my refill with me and turn them over to her if I can't cut myself off.
Wednesday, November 7, 2012
Hobbling around made me forget
Sunday was a bad day for me - I helped at an event on Saturday night and was out for about three hours but evidently I stood up too much. Sunday I was in so much pain I would have preferred to spend the day taking it easy but I sucked it up, took a tramadol and met some friends for lunch. Monday wasn't much better. I made it out for a walk with a friend.
Tuesday by the time I left work, I was in a lot of pain but went to the gym and did about 2/3 of my newly shortened workouts. Also on Tuesday I talked to my rheumatologist and she put me on methatrexate for my RA. It will take a couple of months to start working but the hope is I am not allergic to it as I reacted to Prednisone and Plaquenil. I will take my first weekly dose this morning.
Then I will go to my six month follow up with my radiation oncologist. I completely forgot about that. I have not had time to stress about that visit because I have been side tracked by RA and Fibro. Its not to say cancer has taken a back seat in my medical life but that the pain levels from the other issues are preventing me from stressing about cancer as much.
Maybe its time my life was diverted from cancer-cancer-cancer-cancer to cancer-pain-RA-fibro. There is more to life than cancer. My doctor appointments are not just oncologists. Now I have added a rheumatologist to my two oncologists, endocrinologist, surgeon, and pain doctor for regular visits along with my PCP.
Now I just have to remember the questions I had for my oncologist this morning. Its always good to have questions.
Tuesday by the time I left work, I was in a lot of pain but went to the gym and did about 2/3 of my newly shortened workouts. Also on Tuesday I talked to my rheumatologist and she put me on methatrexate for my RA. It will take a couple of months to start working but the hope is I am not allergic to it as I reacted to Prednisone and Plaquenil. I will take my first weekly dose this morning.
Then I will go to my six month follow up with my radiation oncologist. I completely forgot about that. I have not had time to stress about that visit because I have been side tracked by RA and Fibro. Its not to say cancer has taken a back seat in my medical life but that the pain levels from the other issues are preventing me from stressing about cancer as much.
Maybe its time my life was diverted from cancer-cancer-cancer-cancer to cancer-pain-RA-fibro. There is more to life than cancer. My doctor appointments are not just oncologists. Now I have added a rheumatologist to my two oncologists, endocrinologist, surgeon, and pain doctor for regular visits along with my PCP.
Now I just have to remember the questions I had for my oncologist this morning. Its always good to have questions.
Tuesday, August 14, 2012
Cutting the last support
When you are diagnosed with cancer, your doctors want to know everything about you - every sneeze it seems like - as you go through treatment with them. Then as you get through the surgery and then chemo and then radiation they stop following you. With breast cancer, many women get five years of hormonal treatment on top of everything else. At each stage where you move on through treatment, it seems there is always another doctor there to hold your hand and be on top of potential r-words (which is our biggest fear).
At the end of active treatment - after surgery, chemo, and radiation - many cancer patients emotionally start to fall apart because their doctors who have been there checking on every sneeze for months, tell them 'that's it you will see other doctors from then on'. That sudden lack of daily interactions leaves a cancer patient feeling they are abandoned and out on their own.
I got through that stage because I planned for it. I had heard this and wanted to make sure I wasn't without support. I made sure I had a therapist to help me deal with the transition. But I also had my medical oncologist who I saw regularly as I was on Tamoxifen and then Femara. I always had another appointment where I would check in and we would talk about potential 'r-word' issues.
Yesterday I saw my oncologist and she talked about taking me off Femara in January. She said there is no known added benefit to extending it but some people do if they want. It has been pretty hard on my bones and I have osteoporosis as a result. We talked about potential 'r-words' but she seems pretty confident on that. There is some hope my bones will get better once I am off it.
So I left and then I started thinking. That's it! No more cancer treatment. The last support is being cut.
But the 'r-word' always lurks in the mind of the cancer patient. On the positive side, I give credit to my oncologist for bringing it up and giving me five months to digest that. I am happy to stop taking a pill. But its the evil little thoughts in the middle of the night. I do see my therapist monthly so I am sure this will be a topic of conversation in the coming months.
At the end of active treatment - after surgery, chemo, and radiation - many cancer patients emotionally start to fall apart because their doctors who have been there checking on every sneeze for months, tell them 'that's it you will see other doctors from then on'. That sudden lack of daily interactions leaves a cancer patient feeling they are abandoned and out on their own.
I got through that stage because I planned for it. I had heard this and wanted to make sure I wasn't without support. I made sure I had a therapist to help me deal with the transition. But I also had my medical oncologist who I saw regularly as I was on Tamoxifen and then Femara. I always had another appointment where I would check in and we would talk about potential 'r-word' issues.
Yesterday I saw my oncologist and she talked about taking me off Femara in January. She said there is no known added benefit to extending it but some people do if they want. It has been pretty hard on my bones and I have osteoporosis as a result. We talked about potential 'r-words' but she seems pretty confident on that. There is some hope my bones will get better once I am off it.
So I left and then I started thinking. That's it! No more cancer treatment. The last support is being cut.
But the 'r-word' always lurks in the mind of the cancer patient. On the positive side, I give credit to my oncologist for bringing it up and giving me five months to digest that. I am happy to stop taking a pill. But its the evil little thoughts in the middle of the night. I do see my therapist monthly so I am sure this will be a topic of conversation in the coming months.
Thursday, April 5, 2012
Hold that test!
ASCO, or the American Society of Clinical Oncology, has made five recommendations of tests or treatments for cancer patients.
"The list emerged from a two-year effort by an American Society of Clinical Oncology (ASCO) task force, similar to a project other medical specialties are undertaking, to identify procedures that do not help patients live longer or better or that may even be harmful, yet are routinely performed.
As much as 30% of health-care spending goes to procedures, tests, and hospital stays that do not improve a patient's health, according to a 2008 analysis by the nonpartisan Congressional Budget office."
The first recommendation is: "...that patients who have been successfully treated for breast cancer and have no symptoms of cancer not undergo CT, PET, other imaging, or bone scans to check for recurrence."
ASCO recommends against routine use of four other procedures: chemotherapy for patients with advanced cancers who are unlikely to benefit; advanced imaging technologies such as CT and PET or bone scans to stage early breast and prostate cancers at low risk for metastasis; and drugs to stimulate white blood cell production in patients receiving chemotherapy if they have a risk of febrile neutropenia."
Hmmm... I had a bone scan at my breast cancer diagnosis because I was also experiencing some weird leg pain issues. I did have a PET scan after treatment at one point because there was a 'suspicion' and with my history they need to be sure (blah, blah, blah). I was also hospitalized for febrile neutropenia in the middle of chemo and then had some drugs to take (which I cant remember their name or exactly when) after each session of that chemo.
So what do I think of these changes? I know they are being done with an eye on controlling costs. However some of these greatly ease the patient's mind. If all my friends are getting PET scans why aren't I getting them too - the lemming mentality? I see it all the time on cancer boards. 'I get that test twice a year, you demand your doctor get you that test as well.' People often don't think about costs when their insurance pays for them. And peace of mind is invaluable to patients during and after treatment - they just want to make sure its not there.
While I see benefit in annual mammograms for women with or without a breast cancer diagnosis, I do not really see the benefit of regular CT, PET or bone scans for asymptomatic cancer patients. Fewer trips to the hospital make me a happy girl.
Finally while these are guidelines meaning they are general rules, each cancer patient needs to talk to their doctor about what is appropriate for their needs. A good doctor will be able to give solid reasons why or why not a medical adventure is needed. So once again, go talk to your doctor and see what is right for you.
Wednesday, March 9, 2011
My plans
My short term plans are as follows:
- Any thoughts of a vacation to Egypt, Libya, or any place currently experiencing political unrest, are canceled. I did a report on Egypt in elementary school and have always had a vague plan to visit, but for now, I will keep it as vague.
- As a result of political unrest, gas prices have caused me to forget any plans to go on a driving vacation this year. Currently we are scheduled for a weekend in Maine and another in VT with a few more days in NY. But nothing farther. Well maybe.
- I will get my hair cut this week. It needs it. My hair cut has been canceled twice because of my scheduling conflicts and I feel like I am looking through my bangs (but that's better than being bald and wearing a wig so I guess I can live with that).
- I will continue to speak up to people who don't 'get it' when I talk about health issues. I am sick of being asked repeatedly and responding repeatedly about the same thing by people who just don't get it. I will no longer be quiet and polite - be warned.
- I will also continue to correct people who don't understand the difference between remission and NED (even though I am not a medical person). Remission is for systemic cancers such as lymphoma or leukemia that goes into remission - meaning temporarily, for months or years, it is in control. Remission doesn't happen with solid tumor cancers. NED or No Evidence of Disease is what they use for solid tumor (breast, bone, colon, etc) cancers meaning they can't find any in your body, you show no evidence of it. And those people who think they can use the word 'cure' or 'cured' when talking about cancer status, just shut up. There is no cure for cancer. Once they give you a cancer diagnosis, the best they can say is NED or remission meaning they just can't find it in your body.
- I will stop volunteering as I don't have enough time to do everything I want. I am over committed as it is.
- I will remember to bring a list of questions to my oncologist today so I can get the answers I need.
Perhaps I am a tiny bit cranky today but that is allowed sometimes, especially on days that include doctor appointments.
- Any thoughts of a vacation to Egypt, Libya, or any place currently experiencing political unrest, are canceled. I did a report on Egypt in elementary school and have always had a vague plan to visit, but for now, I will keep it as vague.
- As a result of political unrest, gas prices have caused me to forget any plans to go on a driving vacation this year. Currently we are scheduled for a weekend in Maine and another in VT with a few more days in NY. But nothing farther. Well maybe.
- I will get my hair cut this week. It needs it. My hair cut has been canceled twice because of my scheduling conflicts and I feel like I am looking through my bangs (but that's better than being bald and wearing a wig so I guess I can live with that).
- I will continue to speak up to people who don't 'get it' when I talk about health issues. I am sick of being asked repeatedly and responding repeatedly about the same thing by people who just don't get it. I will no longer be quiet and polite - be warned.
- I will also continue to correct people who don't understand the difference between remission and NED (even though I am not a medical person). Remission is for systemic cancers such as lymphoma or leukemia that goes into remission - meaning temporarily, for months or years, it is in control. Remission doesn't happen with solid tumor cancers. NED or No Evidence of Disease is what they use for solid tumor (breast, bone, colon, etc) cancers meaning they can't find any in your body, you show no evidence of it. And those people who think they can use the word 'cure' or 'cured' when talking about cancer status, just shut up. There is no cure for cancer. Once they give you a cancer diagnosis, the best they can say is NED or remission meaning they just can't find it in your body.
- I will stop volunteering as I don't have enough time to do everything I want. I am over committed as it is.
- I will remember to bring a list of questions to my oncologist today so I can get the answers I need.
Perhaps I am a tiny bit cranky today but that is allowed sometimes, especially on days that include doctor appointments.
Sunday, October 24, 2010
The M word
In cancer there are two nasty words no one wants to hear. The R word - recurrence - and the M word - metastases. The R word means it came back. The M word means it spread to other parts of your body. Quite often you get these words together as cancer often returns in another body part.
However there are some people who are diagnosed initially with metastatic cancer meaning they have a primary tumor or tumors and it is also found in other body parts. For them a cancer diagnosis is a double whammy. Not only do they have cancer, they have in multiple areas where it needs to be treated. It means (in my non medical mind) that it is in your system and you need to be treated systemically, not just locally as with an early stage cancer. And the treatment and the scrutiny will continue for the rest of their lives.
At the initial diagnosis, when cancer is found they test to see if they can find the cancer anywhere else. If they do, that's the M word.
The sad thing with metastatic cancer is that very little research is done in this area. I think the percentage of breast cancer research that focuses on metastatic breast cancer is somewhere around 4%. That is extremely low. Wouldn't it make sense that to look for not just the cause of cancer but why it spreads or returns? I have several friends who are in this boat.
Any time a person living with cancer goes back to the doctor, particularly to the oncologist, all we are thinking as well go 'no M word, no R word, no M word, no R word, no M word, no R word...' over and over again. Tell me I have a bleeding ulcer, a broken leg, degenerating back discs, gall stones, kidney stones, lymphedema, benign anything. But not the M word and not the R word and I am happy.
Thursday, August 14, 2008
The Olympics
I figure its time to write about the Olympics since its what's on everyone's mind. We have the basic questions of how does Michael Phelps win all those races - and not sink to the bottom of the pool after eating 12,000 calories a day? (I heard a quote on the radio yesterday that all he does in Beijing is eat, sleep, and swim.) Then there is the ever controversial question of the age of the Chinese women's gymnastic teams - they really don't look 16. And what is with that really weird bandage/brace on the shoulder of the US woman's volleyball player? Its a bunch of weird black straps.
What I really want to know is where do all these sports come from? I know some sports, such as ping pong are just not that big here in the US, but I bet if I really wanted I could watch them regularly on some obscure cable channel. I don't think the US is in medal contention there. (Okay Forrest Gump played ping pong but that was Hollywood, a/k/a not real.) But synchronized swimming you do hear about occasionally but synchronized diving? Who knew the US had a team that was in medal contention? Rhythmic gymnastics is another one you just don't hear about, as well as badminton (its a sport played in people's back yards when they are sick of volley ball). I know there are other sports that are part of the Olympics that I can't even think of this early in the day.
Another question I have is why China for the Olympics? Was this meant to be their chance to show the world they are a modern country? They have some of the worst pollution I have seen - you can see the haze in the air on TV. They bulldozed neighborhoods to build Olympic facilities and (this is my favorite - think of it as a giant bandaid) they built 8' walls to hide businesses and homes so no one could see the poverty and real life on the streets of Beijing. We also won't even talk about the human rights, Three Gorges Dam, Tibet/Dalai Lama, Tiannamen Square, and the one child policy that has made wife stealing a modern crime. Okay, I am sure every city that has hosted the Olympics in recent years has been guilty of leveling neighborhoods to create space for the Olympic village but I wonder how generous the relocation packages were in Beijing? Anyhow it is a nice change in television coverage for two weeks this summer.
Anyhow, today is another day in my boring life. Here's a surprise. I will go for a walk and work from home and then am meeting a friend. How exciting! I am even getting my nails done.
Yesterday, I did go outside and garden for an hour in the sunshine. We had a sunny day for the first time in weeks. Today is cloudy and gloomy again but they promise Sunday will be nice again. Also, I went to the radiation oncologist for a follow up yesterday. She said, other than the fact that I amazingly had another bad mammogram in June (we already went that round on the roller coaster of life) and I have a follow up with the medical oncologist in October and the surgeon in December, that she doesn't need to see me again until March as everything else is normal, or healing normally. All the random pains I get are a normal part of the healing process for some lucky people. Red skin from radiation still is normal. Blah, blah, blah, blah. But why can't you get a clean mammogram? Grrr!!!!
What I really want to know is where do all these sports come from? I know some sports, such as ping pong are just not that big here in the US, but I bet if I really wanted I could watch them regularly on some obscure cable channel. I don't think the US is in medal contention there. (Okay Forrest Gump played ping pong but that was Hollywood, a/k/a not real.) But synchronized swimming you do hear about occasionally but synchronized diving? Who knew the US had a team that was in medal contention? Rhythmic gymnastics is another one you just don't hear about, as well as badminton (its a sport played in people's back yards when they are sick of volley ball). I know there are other sports that are part of the Olympics that I can't even think of this early in the day.
Another question I have is why China for the Olympics? Was this meant to be their chance to show the world they are a modern country? They have some of the worst pollution I have seen - you can see the haze in the air on TV. They bulldozed neighborhoods to build Olympic facilities and (this is my favorite - think of it as a giant bandaid) they built 8' walls to hide businesses and homes so no one could see the poverty and real life on the streets of Beijing. We also won't even talk about the human rights, Three Gorges Dam, Tibet/Dalai Lama, Tiannamen Square, and the one child policy that has made wife stealing a modern crime. Okay, I am sure every city that has hosted the Olympics in recent years has been guilty of leveling neighborhoods to create space for the Olympic village but I wonder how generous the relocation packages were in Beijing? Anyhow it is a nice change in television coverage for two weeks this summer.
Anyhow, today is another day in my boring life. Here's a surprise. I will go for a walk and work from home and then am meeting a friend. How exciting! I am even getting my nails done.
Yesterday, I did go outside and garden for an hour in the sunshine. We had a sunny day for the first time in weeks. Today is cloudy and gloomy again but they promise Sunday will be nice again. Also, I went to the radiation oncologist for a follow up yesterday. She said, other than the fact that I amazingly had another bad mammogram in June (we already went that round on the roller coaster of life) and I have a follow up with the medical oncologist in October and the surgeon in December, that she doesn't need to see me again until March as everything else is normal, or healing normally. All the random pains I get are a normal part of the healing process for some lucky people. Red skin from radiation still is normal. Blah, blah, blah, blah. But why can't you get a clean mammogram? Grrr!!!!
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