Navigating the Cancer Journey

[David Baxter PhD]

OncoPilot: Navigating the Cancer Journey
OncoLink.org
October 2, 2019

This guide has been developed to give you suggestions on ways to make a new diagnosis of cancer easier and to help you make the best decisions during this emotional time. It is important for the patient to become an active member of his or her healthcare team.

Mapping the Journey

What can I do BEFORE my first appointment with the oncologist?: It can be several days or weeks until you meet with a specialist to learn more about your diagnosis and this time can be filled with anxiety and fear.

Finding an Oncologist: Finding the right doctor is not as simple as one would think. Here are some tips to assembling the right team for you.

Using the Internet to Learn About Cancer: The Internet can be helpful- or harmful- when it comes to health information. Use these tips to find reliable, accurate websites.

Resources for More Information: General Cancer Information: This list of general cancer websites can be a great start on your search for information.

New Diagnosis: Questions to Ask: This is your care, so be prepared to ask the questions that will help you make decisions regarding your treatment team and your care with this guide.

Second Opinions: While not right for every case, this article helps you understand the potential value to a second opinion and how to go about getting one.

The First Visit to a Specialist: This article covers ways to prepare to assure you get the most out of this visit.

Preparing for Your First Day of Chemotherapy: Tips to easing the anxiety of the first chemotherapy treatment.

Managing Recurrence: When the fear of recurrence becomes reality, you may feel overwhelmed and not know where to start. These suggestions can get you pointed in the right direction.

Stopping or Taking a Break from Therapy: For many people with cancer, there may come a time when enough is enough. You have every right as a patient to stop treatment or take a break at any time.

On the Journey
While receiving cancer treatments, you may be searching for different information than when you were first diagnosed. Information about treatments, managing side effects or practical and emotional concerns. This page can be a jumping off point for you.

Back in Port
The "End" of the Journey: After active treatment is complete, you will begin a plan for follow-up care. Completion of therapy is a time when friends and family say "Congratulations" and "You must be glad to be done", but you may be feeling uncertain about this milestone. You aren't alone. This is a very common reaction and there are a few tips to help you deal with it.

Keeping the Logs
Keeping a record of treatments, tests and appointments can be a great help when seeing multiple physicians, at follow up visits or in the event of a trip to the emergency room. The forms in this section are designed to be printed and carried with you to appointments. You may want to start a 3 ring binder or folder to keep them easily accessible and organized. Have a family member draw a fun picture or use a photo you like to dress up the cover! As tests or therapies are completed, ask your nurse or doctor to record them on the chart. If you require additional pages, you can print just the page you need.

Download the following PDF Logs

• Appointment List 125.39 KB
• Blood Counts Record 158.73 KB
• Calendar Pages 96.4 KB
• Cancer Therapy Treatment Summary 501.39 KB
• Chemotherapy Biotherapy Record 129.81 KB
• Download All OncoPilot files [ZIP] 1.49 MB
• Family History of Cancer 122.32 KB
• Hospitalization Surgery Record 126.98 KB
• Laboratory Tests Record 123.64 KB
• Medication List 129.25 KB
• My Insurance Information 178.23 KB
• Provider List 122.66 KB
• Radiation Therapy Record 174.93 KB
• Radiology Diagnostic Tests Record 126.46 KB

 

[GaryQ]

Is all this completely relevant in Canada?
although our health system is pretty awesome is getting a second opinion even remotely possible? Seems like the delays involved (we know professionals really don’t like being second guessed In pretty much all fields) seems like the added delays could have a significant impact on the final outcome when it is in regards to cancer seems like time is the most important thing in treatment.

Just a curious thought on a subject I hope to never have to deal with personally. Especially considering how the treatments involved are almost as difficult to go through and overcome as the illness itself. (Based on what Ive seen and heard) The anxiety must be extremely difficult even for people who normally deal extremely well with stress.

Just waiting for the pathology report regarding my mass was very stressful

 

[David Baxter PhD]

It is indeed relevant. Even getting a second opinion might be relevant, if the first one leaves any doubt, although with most cancers moving as quickly as possible to treatment is usually advisable.

 

[GaryQ]

I guess I should have phrased it better. It's all relevant just was wondering about the possibility of getting a 2nd opinion in Canada without adding too much delays and how slim the chances are of one contradicting a colleague. I've see first hand How psychiatrists defend each other when my doc asked another for a second opinion. they get very irritated and that b*tch made me go, the way across the city and wait about an hour rather than calling me to come out be told she would not see me and that my doctor was an idiot. When I told my doc what she called him he said "I know she Literally told me The same thing in her letter I just got"

Hopefully I'll be long gone before my mass gets symptomatic as snipping it out vs resection was already questionable at 3 cm.
Really hope I don't have to ask for first hand advice regarding "what's it like when they cut out a section of you colon?" Getting a surgeon's opinion isn't the same as getting it from someone who's actually been through it. And I guess that also varies depending on what amount and part of the colon was removed. Somehow the sigmoid area doesn't seem like a very fun place after the rectum to have anything cut and sewed back together.

I got ticked off at my doc when he downplayed it by saying the gastroenterologist said follow up colonoscopy in 5 years. To which I responded don't forget the "or when it becomes symptomatic part" As the specialist said The great thing about a lipoma mass is it will never become malignant the bad part is the fact it's not attached to the wall of the colon like a polyp it's root is in the inside and risk of perforation attempting to remove it when it's the size of mine is high depending on how deep within the colon wall it reaches. I was already at large when diagnosed and at the point he warned me that if he needed to remove it and tried snipping it out there was a good possibility of being sent directly to the colon chop chop room without possibility of contestation.

i know my doc's job it to keep me calm and downplay anything that isn't problematic until it is... I'm other words worry about it when it is a real problem but the downplaying part can be a pain in the ass "pun intended"

 

[David Baxter PhD]

It depends on the type of cancer, as I said. For example, many, perhaps most prostate cancers are slow growing so it may well be safe to wait for a second opinion in that case. That's where your family doctor is often your best source of advice.

With something like colon cancer, breast cancer, pancreatic cancer, that sort of thing, I personally wouldn't want to take the chance.

And yes, there's always a risk with masses in the colon of a puncture. If you're worried about it, ask your doctor for a referral for a second colonoscopy in 12-24 months, rather than waiting 5 years.

 

[GaryQ]

ASK FOR A COLONOSCOPY?

Let me reflect on that for a moment...
Hell no at least if it becomes symptomatic I get rush treatment and no going back for a bunch of different tests.

Ill wait this one out. Having first hand experience You’ll be the first one to get a panicked text message for advice should I get a sad diagnostic in 4 years or when I wake up after finding out they cut me up after things got symptomatic. I’m sure that one text we both hope I never send!