I’ve been reading some of the Facebook pages about oral and head and neck cancers, and I’m quite surprised at how many people don’t really know what is going on with their treatments, or the treatments of a loved one. And in way too many cases, people just don’t know how to cope with the entire situation. I seriously recommend that before you do much else in your battle with cancer, you select a ‘buddy’ to help you through this. Oh, please, don’t give me that macho I-can-do-this-on-my-own bullshit. The odds are really good that you’ve never been here before. How do you know that you can handle it? This isn’t a situation you can talk yourself out of, a bullet that you can dodge, a bar fight that you know you can win, or one where tears, a pout and stamping your cute little hoof will serve you well. Cancer won’t listen to your finely crafted rhetoric. This damn thing is an IED that’s already gone off and tossed you into a ditch. You’ve lost the bar fight. Not only did the heel on your shoe break when you stamped your little hoof, you’ve also broken a fingernail. So get someone to help get control of some of the harsh, day-to-day realities: you need to concentrate on surviving.
Choosing a ‘buddy’ really does require some serious thought on your part and the part of your spouse or significant other. You are in need of a ‘health care advocate’, not just a shoulder to lean on. In my wanderings around the Internet I’ve discovered that in the United States of America there are people and organizations that you can hire to be your advocate as you try to work your way through the complex insurance, diagnosis and treatment systems set up to deal with cancer. Even in Canada, sometimes it might help to have a professional looking after your best interests when dealing with the medical system, and your world in general, now that it is in such disarray. But you’ll probably stick with someone close to you to work with you as you navigate your way to restored health. Consider them a Cancer Survival Project Coordinator.
Be aware that your spouse/partner may not be the best person for this job. It may not be your parents, or a sibling, or even your best friend. All of these people love you, which could be a bit of a problem in context. Can they sit and just listen to the specialists without allowing hysteria to creep in? Are they able to figure out what questions need to be asked and when? Will they really help you to make the right decision, the best decision? Do they have the depth, the strength not to throttle an inconsiderate nurse, or an uncommunicative doctor, a completely dense pharmacist or an unaware acquaintance? Can they be cheery, diplomatic, analytical, and keep you, all of your appointments and your Personal Support Team organized? Do you trust them to speak for you to your family, your friends, your employer, your banker? Will they let you rage, weep, moan and then help you back to centre without patronizing you? Will they give you a kick in the ass when you deserve one? Keep looking for this is the type of person you need to be your Cancer Survival Project Coordinator.
Now, back to what brought this topic up… there are folks out there who have no idea what is happening to them, what is and is not being done for them, and what comes next.
Challenge everything; research, go on the Internet, get a second opinion. Demand answers.
There is no need to be rude about it, but make sure your doctors and advisors understand that you will not be taking things at face value. This is one of the crucial activities for your buddy; making sure that you are not slipping into complacency when it comes to your treatment regimen, that you are not blindly following the doctors’ advice. It is only a comment on human nature, but your doctors will treat you with a wee bit more respect and 'inclusion' if you've done your homework. It is the very rare health care practitioner who gets annoyed if you seem to be well on your way to expert status about what's trying to kill you. And if they are annoyed, you need to think seriously about finding another doctor.
Work out the ‘plan’ for treatment with your doctors, with your buddy’s help. What do we do now to get rid of the disease? Conferences with your doctors will provide you with most of the information you need to make informed choices for your treatment. Surgery? Rarely done on its own. Radiation? Before or after surgery? What about Chemotherapy? Adjunctive therapy? Alternate medical options? All of these need to be discussed, researched and scheduled. A plan helps you, your family and friends, and your employer focus on the future. And a good buddy helps it all stay on track.
Thursday, March 18, 2010
Monday, March 15, 2010
We need a Canadian push... Oral, head and neck cancer awareness
The Oral Cancer Foundation in the States is starting to make some serious headway in the awareness campaign to make people sit up and take notice of the need for early detection of Oral, Head and Neck cancers. Hell, look what early detection did for me! Leveraging the good work of the Head and Neck Cancer Alliance's 'walks' organized around the free screening program that is being promoted for a week in April, this year from April 12th 'til the 18th (2010), they are aggressively targeting the broad spectrum of the population who just don't get it, but might. Now that sounds a bit mean... it isn't that they don't get it, per se, but they don't understand that the risk of contracting an oral, head or neck cancer is no longer limited to those using tobacco or alcohol. Step through these videos: http://www.youtube.com/watch?v=4dvmRCcpnJM and then try the ones on this page: http://www.oralcancer.org/multimedia/index.htm . Hmmm... maybe you should do them in the reverse order.
In any event, there needs to be more participation during this awareness push from the cancer centres around North America, and Canada in particular. So far, I can only find three centres in Canada that have jumped on this particular bandwagon: The Nova Scotia Head and Neck Cancer Team in Halifax, the London Health Sciences Centre in Ontario, and Vancouver Coastal Health in BC. Our American counterparts have 156 centres signed up... the rest of the world has 26.
Now, if I can just figure out how to get the firm as involved in this one as they are in the Weekend to End Women's Cancers....
A violent few days...
The Monday has dawned as a bright, warmish (for March in northern Alberta!) day after a week and weekend of violence... both man-made and another example of Mother Nature pushing back.
Late last week in Ontario, just outside of Belleville, an eighteen year old boy murdered two people while trying to get at his estranged girlfriend. He killed the girl's mother, her younger sister and seriously injured the object of his affection before fleeing... The husband/father found the carnage when he returned home early in the morning from what I assume was a night shift.
Here in Edmonton a disgruntled employee, suspended from his job as a mechanic at a local car dealership for uttering 'racially charged remarks' went into the dealership one morning with a shotgun and started shooting. He killed one person, wounded others, and then killed himself. It is made that more poignant when one understands that one of the first responders, a female police officer, discovered that it was her husband which had been killed by the shooter.
As we begin to understand the background stories to the scenarios, we begin to see that there were certain checks and balances in place that may have identified the killers before the situation got to these levels, if they had been properly applied. Hindsight is 20/20 though, isn't it?
But this same sort of due diligence and care that could have saved 4 lives should also have been applied to a scenario which allowed Mother Nature's wrath to kill two people and hurt up to 30 others in the mountains just out side of Revelstoke. Even after being warned, even after avalanche alerts had been posted for a specific area, up to 200 people chose to ignore the evidence and rode their snowmobiles into the back country for a competition, the Big Iron Shoot-out on Boulder Mountain, challenging the mountain to push back. It did. People died.
There are warning signs. There are behaviours that we can identify if we're paying attention. Indicators are usually in place before human beings cause something irreversible to happen. People don't pay attention to the signs. Or, unfortunately, they become thrill junkies putting others at risk.
Late last week in Ontario, just outside of Belleville, an eighteen year old boy murdered two people while trying to get at his estranged girlfriend. He killed the girl's mother, her younger sister and seriously injured the object of his affection before fleeing... The husband/father found the carnage when he returned home early in the morning from what I assume was a night shift.
Here in Edmonton a disgruntled employee, suspended from his job as a mechanic at a local car dealership for uttering 'racially charged remarks' went into the dealership one morning with a shotgun and started shooting. He killed one person, wounded others, and then killed himself. It is made that more poignant when one understands that one of the first responders, a female police officer, discovered that it was her husband which had been killed by the shooter.
As we begin to understand the background stories to the scenarios, we begin to see that there were certain checks and balances in place that may have identified the killers before the situation got to these levels, if they had been properly applied. Hindsight is 20/20 though, isn't it?
But this same sort of due diligence and care that could have saved 4 lives should also have been applied to a scenario which allowed Mother Nature's wrath to kill two people and hurt up to 30 others in the mountains just out side of Revelstoke. Even after being warned, even after avalanche alerts had been posted for a specific area, up to 200 people chose to ignore the evidence and rode their snowmobiles into the back country for a competition, the Big Iron Shoot-out on Boulder Mountain, challenging the mountain to push back. It did. People died.
There are warning signs. There are behaviours that we can identify if we're paying attention. Indicators are usually in place before human beings cause something irreversible to happen. People don't pay attention to the signs. Or, unfortunately, they become thrill junkies putting others at risk.
Friday, March 12, 2010
Results...
On Monday of this week I met with my GP to go through the results of the leg x-ray that he had ordered some time ago, and to discuss the results of Holter monitoring that was performed just before Christmas. I also decided that I was going to raise the question about my CT scan, ask about the Synthroid dose (thyroid medication), and get the doctor to take a look at a bit of an anomaly in the skin on my forehead.
Holter Test: Now obviously there was no problem with the Holter or the doctor would have been on the phone to me almost immediately.
You'll remember that I am having some 'balance' issues. Dr. Williams has put it down to one of those chemotherapy side effects that they don't tell you about. Dr. Naiker has been in agreement, but he is also a closet skeptic: he ordered the Holter monitoring to ensure that there isn't a problem with blood flow to my head caused by the really invasive surgery I've been through to get rid of the oropharyngeal cancer. The end result of the Holter monitoring is that everything from that perspective is just fine. Over the 20 hours of monitoring, my heart beat something like 97,000 times. There were no issues diagnosed. Which then takes us back to the chemotherapy fallout as a potential reason for the balance problems.
Leg X-ray: This scan was done because of pain that I have been experiencing in my right thigh. I have been suspecting that I'm developing either a problem in my knee or my hip which is reflecting pain into my thigh. When the doctor pulled up the radiologist's report, the first question he asked me was: 'Were you a runner?'. Uh, yes... I ran distance from the time I was about 10 years old living in Guelph until the end of high school, making me 18. I stopped doing any serious running when I went off to University... and the only real running I have done recently has been a brief spurt at the local gym for the couple of years before I was diagnosed with cancer. Well, apparently it took its toll... and I should have continued running. We don't have any arthritis, or damage to the knee or the hip... what we have is calcification on the muscles. No serious problems. Just basic wear and tear.
Synthroid; after a quick discussion about a rather unpleasant and somewhat embarrassing side effect, we agreed that we would try knocking back the dosage from 100mg to 75mg. Oh, and it turns out that the last set of blood tests show that my TSH levels were perfect.
Forehead anomaly; I forgot to bring it up. The discussion about the CT scan completely distracted me. It is something that bears watching, however...
Neck and Chest CT Scan; Realizing that Dr. Williams did say my neck and chest CT was okay, and that there was nothing there to be concerned about, I just thought that I would leverage Dr. Naiker's skeptical nature and get him to review the results with me. Dr. Naiker printed out the actual report and gave it to me. We discussed it. I'm providing the text of the findings here. The red coloured text is my interpretation (and discussion with Dr. Naiker). The blue belongs to the radiologist.
Findings:An osteotomy is noted involving the body of the mandible anteriorly on the right side which has been transfixed with a plate and multiple screws. This is where they broke my jaw for the mandibular swing, then bolted it back together.
Multiple surgical clips are present in the region of the right palatine tonsil compatible with transmandibular/transoral resection of a squamous cell carcinoma. An associated free flap is noted. There is evidence for a bilateral neck dissection along with resection of the right submandibular gland and possibly resection of the right sternocleidomastoid muscle. Obviously the guy has either read the file and is merely corroborating it, or he's really good! Additionally, there is evidence for a left submandibular gland transfer procedure into the submental region. This is evidence that they moved my saliva gland from its original location to low in the left portion of my jaw. A tiny/small soft tissue focus is present in the region of the right piriform sinus inferiorly. Absent contrast filling is noted within the transverse and sigmoid dural venous sinuses extending into the proximal internal jugular vein on the right side compatible with thrombosis. This made us both sit up and take notice. A 'thrombosis' is a clot. Is this a bit of scar tissue from the surgery? The location described indicates that it may be... and therefore may be responsible for my balance issues. The soft tissues of the neck are otherwise unremarkable. Scarring is noted at the lung apices. Note is made of congenital incomplete fusion of the posterior neural arch of C1. Okay, so that the beginning of the cervical spine, and, according to Dr. Naiker is not that unusual. To the extent visualized, the orbits, the paranasal sinuses, the mastoid air cells and the brain parenchyma are unremarkable. Other than the scar tissue, nothing sounds ominous. But the report goes on with a statement of findings.
IMPRESSION: The radiologist's caps, not mine.
1. Findings compatible with transmandibular and transoral excision of a squamous cell carcinoma in the region of the right palatine tonsil with free flap reconstruction and bilateral neck dissection as well as left submandibular gland transfer procedure as stated above. A soft tissue focus is present with the right piriform sinus inferiorly which may simply reflect secretions, however, tumor recurrence remains a possibility. Further assessment under direct visualization may be helpful. This is the bit that Dr. Williams mentioned during our phone call on a week ago. He had performed the 'visualization' when we met, and we had talked about the increased mucous production, so he is not concerned.
2. Findings compatible with thrombosis involving the transverse and sigmoid dural venous sinuses as well as the proximal internal jugular vein on the right side. This is the possible scar tissue again.
As for what is the piriform sinus, I've lifted an explanation and a drawing from Wikipedia for you:
"On either side of the laryngeal orifice is a recess, termed the piriform sinus (also piriform recess, pyriform sinus, or piriform fossa), which is bounded medially by the aryepiglottic fold, laterally by the thyroid cartilage and hyothyroid membrane. The fossae are involved in speech.
The term "piriform," which means "pear-shaped," is also sometimes spelled "pyriform" (as in the diagram on this page.)
Deep to the mucous membrane of the piriform fossa lie the recurrent laryngeal nerve as well as the internal laryngeal nerve, a branch of the superior laryngeal nerve.[1] The internal laryngeal nerve supplies sensation to the area, and it may become damaged if the mucous membrane is inadvertently punctured.
While accurate, the diagram is misleading in that the piriform sinus is not a subsite of the larynx. Rather, it is a subsite of the hypopharynx. This distinction is important for head and neck cancer staging and treatment.
Dr. Naiker arranged to have a chat with Dr. Williams about these two 'issues'. He then had his nurse call me and let me know that everything is as we thought, and that there are no worries.
All of this essentially means that I can continue to say that I am now two years cancer free!
Holter Test: Now obviously there was no problem with the Holter or the doctor would have been on the phone to me almost immediately.
You'll remember that I am having some 'balance' issues. Dr. Williams has put it down to one of those chemotherapy side effects that they don't tell you about. Dr. Naiker has been in agreement, but he is also a closet skeptic: he ordered the Holter monitoring to ensure that there isn't a problem with blood flow to my head caused by the really invasive surgery I've been through to get rid of the oropharyngeal cancer. The end result of the Holter monitoring is that everything from that perspective is just fine. Over the 20 hours of monitoring, my heart beat something like 97,000 times. There were no issues diagnosed. Which then takes us back to the chemotherapy fallout as a potential reason for the balance problems.
Leg X-ray: This scan was done because of pain that I have been experiencing in my right thigh. I have been suspecting that I'm developing either a problem in my knee or my hip which is reflecting pain into my thigh. When the doctor pulled up the radiologist's report, the first question he asked me was: 'Were you a runner?'. Uh, yes... I ran distance from the time I was about 10 years old living in Guelph until the end of high school, making me 18. I stopped doing any serious running when I went off to University... and the only real running I have done recently has been a brief spurt at the local gym for the couple of years before I was diagnosed with cancer. Well, apparently it took its toll... and I should have continued running. We don't have any arthritis, or damage to the knee or the hip... what we have is calcification on the muscles. No serious problems. Just basic wear and tear.
Synthroid; after a quick discussion about a rather unpleasant and somewhat embarrassing side effect, we agreed that we would try knocking back the dosage from 100mg to 75mg. Oh, and it turns out that the last set of blood tests show that my TSH levels were perfect.
Forehead anomaly; I forgot to bring it up. The discussion about the CT scan completely distracted me. It is something that bears watching, however...
Neck and Chest CT Scan; Realizing that Dr. Williams did say my neck and chest CT was okay, and that there was nothing there to be concerned about, I just thought that I would leverage Dr. Naiker's skeptical nature and get him to review the results with me. Dr. Naiker printed out the actual report and gave it to me. We discussed it. I'm providing the text of the findings here. The red coloured text is my interpretation (and discussion with Dr. Naiker). The blue belongs to the radiologist.
Findings:An osteotomy is noted involving the body of the mandible anteriorly on the right side which has been transfixed with a plate and multiple screws. This is where they broke my jaw for the mandibular swing, then bolted it back together.
Multiple surgical clips are present in the region of the right palatine tonsil compatible with transmandibular/transoral resection of a squamous cell carcinoma. An associated free flap is noted. There is evidence for a bilateral neck dissection along with resection of the right submandibular gland and possibly resection of the right sternocleidomastoid muscle. Obviously the guy has either read the file and is merely corroborating it, or he's really good! Additionally, there is evidence for a left submandibular gland transfer procedure into the submental region. This is evidence that they moved my saliva gland from its original location to low in the left portion of my jaw. A tiny/small soft tissue focus is present in the region of the right piriform sinus inferiorly. Absent contrast filling is noted within the transverse and sigmoid dural venous sinuses extending into the proximal internal jugular vein on the right side compatible with thrombosis. This made us both sit up and take notice. A 'thrombosis' is a clot. Is this a bit of scar tissue from the surgery? The location described indicates that it may be... and therefore may be responsible for my balance issues. The soft tissues of the neck are otherwise unremarkable. Scarring is noted at the lung apices. Note is made of congenital incomplete fusion of the posterior neural arch of C1. Okay, so that the beginning of the cervical spine, and, according to Dr. Naiker is not that unusual. To the extent visualized, the orbits, the paranasal sinuses, the mastoid air cells and the brain parenchyma are unremarkable. Other than the scar tissue, nothing sounds ominous. But the report goes on with a statement of findings.
IMPRESSION: The radiologist's caps, not mine.
1. Findings compatible with transmandibular and transoral excision of a squamous cell carcinoma in the region of the right palatine tonsil with free flap reconstruction and bilateral neck dissection as well as left submandibular gland transfer procedure as stated above. A soft tissue focus is present with the right piriform sinus inferiorly which may simply reflect secretions, however, tumor recurrence remains a possibility. Further assessment under direct visualization may be helpful. This is the bit that Dr. Williams mentioned during our phone call on a week ago. He had performed the 'visualization' when we met, and we had talked about the increased mucous production, so he is not concerned.
2. Findings compatible with thrombosis involving the transverse and sigmoid dural venous sinuses as well as the proximal internal jugular vein on the right side. This is the possible scar tissue again.
As for what is the piriform sinus, I've lifted an explanation and a drawing from Wikipedia for you:
"On either side of the laryngeal orifice is a recess, termed the piriform sinus (also piriform recess, pyriform sinus, or piriform fossa), which is bounded medially by the aryepiglottic fold, laterally by the thyroid cartilage and hyothyroid membrane. The fossae are involved in speech.
The term "piriform," which means "pear-shaped," is also sometimes spelled "pyriform" (as in the diagram on this page.)
Deep to the mucous membrane of the piriform fossa lie the recurrent laryngeal nerve as well as the internal laryngeal nerve, a branch of the superior laryngeal nerve.[1] The internal laryngeal nerve supplies sensation to the area, and it may become damaged if the mucous membrane is inadvertently punctured.
While accurate, the diagram is misleading in that the piriform sinus is not a subsite of the larynx. Rather, it is a subsite of the hypopharynx. This distinction is important for head and neck cancer staging and treatment.
Dr. Naiker arranged to have a chat with Dr. Williams about these two 'issues'. He then had his nurse call me and let me know that everything is as we thought, and that there are no worries.
All of this essentially means that I can continue to say that I am now two years cancer free!
Monday, March 01, 2010
Following up the Medical Receptionist post
This morning I was finally able to get through to my GP's office, and I spoke with the woman who had left the cryptic message on my home answering machine. I was gentle but firm in letting her know the consternation which that sort of the call can trigger. She won't be doing it again, hopefully. She also agreed to re-order the contact numbers in my file so that my cell phone gets called before the house phone.
I also asked her to tell me which damned test the doctor wanted to discuss, and she told me that it was, indeed, the x-ray of my right thigh. So, we also set up an appointment for Monday next to review the leg x-ray.
She actually did thank me for pointing out the distress that the Friday afternoon calls can cause, and resolved to be careful in future with all patients.
I also asked her to tell me which damned test the doctor wanted to discuss, and she told me that it was, indeed, the x-ray of my right thigh. So, we also set up an appointment for Monday next to review the leg x-ray.
She actually did thank me for pointing out the distress that the Friday afternoon calls can cause, and resolved to be careful in future with all patients.
And the results are in...
After a brief conversation this morning with Dr. Williams, my oncological surgeon, I can tell you that the Neck and Chest CT scan is NOT showing anything that one should be worried about. There is some decrease in secretion at the top of the esophagus, but Dr. Williams' visual exam (with that damned scope thingee) showed nothing. The radiologist did point out a tiny granuloma, but indicated that it was likely age related, and not linked to the cancer, or anything else worth being concerned about.
Dr. Williams did ask about the cough that started this round of scans: is it worse? is it better? I told him that it is no worse, but I’m not sure if it has gotten any better. He offered me the option of the ‘wait-and-see’ approach, or the ‘call-the-pulmonary-guy’ approach. We joked a bit about ‘the happy wife means a happy life’ and I asked him to go ahead and call the pulmonary guy. G. would have been absolutely furious if she knew that I had turned down any sort of diagnostic.
While I had him on the phone, I asked the doctor to pull up the file on the leg x-ray that was done... and he did a quick look, and indicated that there was nothing there to be concerned about. I will be meeting with my GP on Monday next for an in depth review of that one.
We're still good!! I've made it two years now.
Dr. Williams did ask about the cough that started this round of scans: is it worse? is it better? I told him that it is no worse, but I’m not sure if it has gotten any better. He offered me the option of the ‘wait-and-see’ approach, or the ‘call-the-pulmonary-guy’ approach. We joked a bit about ‘the happy wife means a happy life’ and I asked him to go ahead and call the pulmonary guy. G. would have been absolutely furious if she knew that I had turned down any sort of diagnostic.
While I had him on the phone, I asked the doctor to pull up the file on the leg x-ray that was done... and he did a quick look, and indicated that there was nothing there to be concerned about. I will be meeting with my GP on Monday next for an in depth review of that one.
We're still good!! I've made it two years now.
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