In this section, we will discuss some important things for a newly diagnosed kidney cancer patient to know from the beginning. There are several pieces of advice each of us as a kidney cancer warrior or loved one wants you to know. This blog contains a great deal of information from kidney cancer patients and their loved ones, who just like you, were diagnosed, went through the shock of hearing the "c" word, and then had to begin their journey of the kidney cancer roller coaster.
First of all, Shock - You've just been diagnosed with kidney cancer. Heard of cancer but never heard of kidney cancer until now. Are all cancers the same? (NO) What does it all mean? They are talking about surgically removing the effected kidney. Can I live with just one kidney? (YES) What will this mean to the quality of my life? Will I die?
Shock and fear are common initial responses to the diagnosis of kidney cancer. You are not alone. Know that these feelings of shock, fear, etc ... will come and go. The period of time for which you will be in shock is different for everyone. Some don't experience it all, others experience it to severe degrees. The best thing you can do is to surround yourself with those who love and care for you. Don't make any decisions without having time to think them through, discuss them with your medical team and your family. Always have someone with you for all your appointments - a great deal of what you hear, will probably not be retained. Know that this will be an emotional time - ups and downs. You're on a new journey in life - it's called the Kidney Cancer Roller Coaster. There will be many ups and downs and twist. However, you have a us - your new kidney cancer family. Although we are saddened that you've had to join "our family," we are glad you're here to get the support you need. So you ask yourself "what do I need to do?"
- Get informed - learn as much as you can about your kidneys, their function in your body.
- Get even more informed - learn everything you can about kidney cancer. It's a process. You won't learn it all over night. There are different types of kidney cancer, different stages, and different furman levels (aggressiveness of cancer). Learn about the surgical options, procedures available, medications (FDA approved and clinical trials), research facilities and physicians - you want to be treated by those who are best informed about your particular diagnosis.
Keep You Own Records: As a newly diagnosed kidney cancer patient, you should know that your personal medical file will soon become huge. You'll need to keep copies of everything. Keep a list of all the doctors you see - their name, address, phone number, the date you saw them and why you saw them. Always keep a record of every medication you are prescribed. Know what you're taking and why is was prescribed. If you stop taking a medication, write the date and why it was stopped. This can come handy down the road. Also, you have a right to your medical information. You'll need to keep copies of everything. Get copies of all your MRI and scan reports but also get them put onto a disc and keep your own disc file as well. Should you need to see another doctor, it is helpful to have your own copy at a moments notice. (Whenever I give (or send) a doctor a copy of my husband's disc, I have them return it. They can download the disc into their system very easily.)
As shared by a very knowledgeable member of the KCA forums: "One of the more important things needed to keep a kidney patient alive is full access to his/her medical records. Federal law gives you access to those records. Unfortunately, many hospitals and some doctors do not readily comply with this law leading to delays at best and bad treatment at worst. You need to have copies of your records so that you can participate in your treatment."
So what kind of information do you need to keep on file? Everything! What exactly does that mean?
- a list of your medical history (pre-cancer diagnosis) including any chronic illnesses (hypertension, asthma, diabetes, etc); all surgeries (type of surgery and date); all procedures (type of procedure and date); list family hx - include any chronic illnesses or cancer (including type) of family members - your mother, father, brothers, sisters, grandparents.
- a list of any medications you are currently on, when you started the medication, what doctor prescribed that medication, why you take that medication (some medications are prescribed for more than one type of illness), the dosage you take, the frequency you take that medication (once a day, twice a day, once a week, etc). You will most likely be adding to this list and will need to keep it current. If a medication is discontinued, keep the medication on your list and write when it was discontinued and why.
- obtain copies of all reports for tests such as blood work, CT Scans, PET Scans, MRI's etc
- obtain discs with all of those same tests for you to keep (many facilities will give you a courtesy copy, some will charge you). If you need to send a copy of a scan/MRI to another physician and you send them your copy, request they return the disc to you. Usually, hospitals just download the disc into their system and don't keep the discs anyway.
- obtain a copy of all clinic doctor's notes - after every appointment, doctors write a note regarding your visit.
- If hospitalized, request a copy of the hospital chart. You may not necessarily need the nurse's notes, the medication sheet, etc; however, be sure to get a copy of all doctor's progress notes, tests (scans, MRI's, etc), procedures, surgeries (op notes), biopsies, labs, etc.
If you have not done so, this is the time to take care of any legal documentation such as a living will.
Information Overload -
Know that when you are newly diagnosed with cancer, it is difficult to remember everything the doctors are telling you. There's so much information and your mind is going a mile a minute. It is wise to always take someone with you to all of your appointments. Also, taking a voice activated recorder is a good idea as well. It never fails, you walk out of the doctors office and ask yourself, "What did he or she say about this or that?" It's a lot of information. Don't expect yourself to be able to remember everything.
Be prepared for all of your appointments with all of your doctors. Your doctor's appointments are important. This is the time when you can get answers to those nagging questions. Remember, your doctor's time and your time are both valuable - use this time wisely. Prior to your appointment, questions will come to your mind. Be sure to write these down and take that list of questions to the doctor's appointment with you. It's always easy to forget to ask a question. If you have a question, ask - there is no dumb question. Even if you have to ask the same question more than once, be sure you keep asking until you understand. If you're not understanding the doctor's answer, ask him or her to explain it in a different way so that you can better understand.
If this is your first appointment with this particular doctor (perhaps an oncologist or the urologist/surgeon - you will more than likely see more than one doctor throughout this process), he or she will need to obtain information from you:
- Your medical history in writing
- Your current health status
- Past health problems
- Prior injuries or major illnesses
- Prior surgeries, procedures
- The medical history of your siblings and parents to the degree you know about them. (Family health histories often help a doctor diagnose an illness or problem – or the potential for one)
- Gather all your medical records and send them in advance of your appointment or bring them with you.
- Include:
- Blood work and other test results from past physical exams
- A list of all medications you take and their dosages
- A record of vaccinations, prior illnesses, injuries and hospitalizations
- write down your questions prior to appointment with the doctor and bring two copies of this list of questions to the appt - one for you and one for the doctor. (Saves time and helps to make sure you address everything– especially the tough subjects you might tend to avoid)
- A pad and pencil for taking notes and writing down instructions
- during appointment, write down the answers to your questions
- take a voice activated recorder
- it is highly recommended to take someone with you to all your appointments
- Current symptoms or signs of potential problems and when they occur. (A record over a period of time might offer your doctor a clue to the origins of a problem)
- Your health insurance information
- Bring a copy of any reports for procedures, blood work, etc performed outside of the facility since you last saw your doctor.
Find the right doctor for you. Doctors will play an important role in your journey. Your doctor will be key in your journey. I have the upmost respect for doctors and thank God for their gifts and talents; however, it is important for you, as the patient, to play an active role in the decisions made for your treatment. Your doctor is human and will need your input as to what is best for you. Just as physicians can not perform miracles, their opinions are not always the best for you. Sometimes patients tend to think of doctors as if they are God or the "law" and everything they say is accurate and written in stone. They are human just like you and not every doctor is a right fit for you. It's important you trust your doctor, that you understand what he or she is telling you, and that you feel comfortable discussing your medical situation with your doctor. Decisions should be made by you and your family after you have been made fully aware of your options by your physician. It's your body, your health, your journey, your life. Half the battle is trusting your doctor and your medical team. So, if you don't feel comfortable with a particular doctor, look for another doctor. The doctor / patient relationship should be one of mutual respect and a team that works together to make the best decisions for your health. Remember that you have to judge whether or not a particular doctor is right for you, no matter what a friend or family member may think or say about that doctor. Many physicians believe about 70% of a diagnosis can be made by taking a good look at a medical history and performing a thorough exam. Even in these days of high-tech medicine, the human factor is still extremely important. I might also add that you may have a better idea for your treatment plan than your doctor. There's been a great deal of advancements made in the treatment of kidney cancer. Your doctor may not be aware of all of them. If you've read about a procedure or a treatment, ask your doctor about it. If he or she is not familiar with it, ask them to research it to see if it's an option in your particular circumstances. As an example, my husband and I found a Interventional Radiologist on our own, not recommended by his oncologist, to get an opinion regarding cryo-ablation. Of course, anything you decide to do, in addition to what your oncologist has prescribed, be sure to keep him or her well informed. (We informed his oncologist that we were seeking for an opinion regarding the cryo and, although she was not the one to mention the idea, she thought it was a great idea.)
Also, second opinions will not offend a good physician; in fact, often times, they recommend you get a second opinion. If they don't recommend it, they will typically concur with your decision to obtain a second opinon. Medicine is a huge field and doctors specialize in certain areas. (General practice, oncology, pediatrics, gynecology, podiatry, etc). Some doctors are even more specialized in a certain area than others - medical oncologist verses an rcc specilialized oncologist. If you have cancer, you truly need to be seen by a doctor who specializes in cancer. If you have kidney cancer, it is best to be seen by a doctor who specializes in kidney cancer. With different financial situations, different health insurance issues, limited rcc specialist, etc - this is not always possible, but it is definitely the best option. Please know that if you are told "nothing can be done," you most definitely need to seek a second opinion. Sometimes, "nothing can be done" actually means that particular physician does not have the skills, the experience, the knowledge needed for your particular situation. On a personal note - my husband was told his situation was "non-surgical, non-treatable, and non-curable." Three and a half years later, after getting a second opinion and after surgery and many treatments, he's still fighting the good fight and continues to be treated. He has a great oncologist who works very well "with" us to make decisions that are right for his treatment plan.
Again, I want to stress that my personal opinion is, if at all possible, you want to be seen by an rcc oncologist (an oncologist that specializes in renal cell cancer). There are not that many here in the United States; but, if possible, that's who you want treating you - the best of the best! Also, many patients who are Stage I at time of diagnosis are never seen by an oncologist. The urologist follows them. It is my opinion, even if the surgeon feels like he's "gotten it all", a cancer patient should always be followed by an oncologist (a doctor that specializes in cancer). They may refer you back for follow-up appointments with your urologist, but you should see an oncologist at least once to get their opinion of what is an appropriate follow-up plan of care for your particular situation. If you can not find an rcc specialist in your area, the next best thing is an oncologist that specializes in the genitourinary system (bladder, ureter, kidneys, urethra) or a urological oncologist. Whatever you do - after surgery even if the surgeon says "I got it all and you don't need further follow-up," please get follow-up care. Abdominal and thoracic (chest) scans should be obtained within three months after your surgery. If at three months you present with no evidence of cancer, typically scans would be moved to every six months and then to annual follow-ups for five years. I have chatted with a few NED (no evidence of disease) patients who remained NED for over five years and then had reoccurence. One in particular believes firmly that all cancer patients should be followed annually for the rest of their life. I tend to agree with her.
Surgery:
If surgery is suggested and most often it will be, know that there is a difference between radical nephrectomy (removal of the entire kidney) vs partial nephrectomy (removal of only the effected portion of the kidney). A partial nephrectomy is more complicated and takes a specialized surgeon. This is something you should research. Recently, there has been much discussion and research with regards to the preference of partial nephrectomies over radical nephrectomies. As mentioned, this is not necessarily brought up because not all surgeons are capable of doing a partial nephrectomy. Be sure to inquire and also make sure your particular surgeon has plenty of experience with partial nephretomies if that is the route taken.
They can now do nephrectomies open or laproscopic depending on your cirucmstances. Open surgery is where they would have to make a large incision and open your abdomen to visualize the kidney where laproscopic surgery they insert a probe using some a visual guide like CT to see what they are doing and pull the kidney and tumor out via a very small incision. Typically, laproscopic surgeries leave you with about 4 or 5 small incisions and the healing period is much quicker.
Follow-Up Care After Surgery:
After you have surgery, if you are told by the surgeon "I got it all" - that's great; but please know, that "I got it all" means that the surgeon got anything and everything that was visual. Meaning, there could be cancer cells left in your body. Follow-up care is absolutely necessary for all cancer patients after surgery. If your surgeon tells you no follow-up care is needed, please seek another opinion and please don't wait a year. Make sure you are followed up within 3 to 4 months after surgery. (Typical protocal, if after surgery you are considered NED - no evidence of disease, you will be scanned at 3 months, then every 6 months x 2, then every year. That protocol does change from facility to facilty. However, it is encouraged to push for the more frequent follow-up. The sooner metastatic disease is found, the better the prognosis. Follow-up scans should include thoracic (chest), abdominal and pelvic. Often times, only the abdominal scan is obtained and metastatic disease in the lungs is not found quickly. (Lungs is one of the most common sites for metastatic kidney cancer.) Many stories have been shared of patients having surgery being told "I got it all" with no follow-up recommended. Only to find later, metastatic disease in the lungs. Or follow-up was obtained, but only with abdominal scans. It is reasonable to request a thoracic (chest) scan. In addition to the lungs, other common areas for metastatic kidney cancer to appear are the brain, liver, kidney bed (where primary tumor was removed) and bones. Typcially, upon diagnosis of cancer, scans, MRI's, etc are obtained of one's entire body. Follow-up of body parts are not obtained unless there is cause for that particular body part. For example, a brain MRI should be obtained upon diagnosis. However, another brain MRI would not normally be obtained again unless the patient is presenting with symptoms and a brain MRI is ordered to rule out a brain tumor. However, with chest scans, they should be part of a patients routine follow-up even if there are no symptoms. Patients do not usually complain about symptoms until the metastatic disease has progressed quite a bit.
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RANDOM IMPORTANT THINGS TO REMEMBER:
- A doctor can not tell you when you will die - only God knows that for sure
- Statistics are necessary for scientific purposes but are not necessary for a patient - Each of us are individuals. Each patient's case is unique and there are so many different factors - age, health, type of cancer, etc. No one knows how a patient will respond to treatment
- Know that the treatment of cancer is still very much in the "grey" zone - meaning there are no definites in how one patient will respond verses another. It's all kind of trial and error. But there has been huge advancement over the past five years and there is all the reason in the world to stay positive and keep Hope alive!
- Know that kidney cancer patients should NOT use ibuprofen (which is the same medication as advil and motrin). It has been called "the kidney killer." NOT good for your remaining kidney at all!
- Drink plenty of water - helps to flush your kidney
- Many patients who have had a nephrectomy have highly recommended getting a recliner if you don't already have one. Several have had to sleep in the recliner for a couple of weeks post surgery.
- Another issue that has been brought up in our chat room, surgical patients seem to want to know that typically they will not be discharged from the hospital after surgery until they have had flatulence (passed gas). One patient and his wife now say "no gas, no home."
FINANCIAL ASSISTANCE
There is Financial Assistance available to those who need it. It probably won't fulfill all your needs but it does help and it may take some work and time to obtain it. You may not qualify with the first resource you apply; however, KCW encourages you to keep looking for the assistance you need. There is lots of assistance out there, it just needs to get into the right hands - yours! Unfortunately, to get that assistance, it may take you lots of time, lots of paperwork, lots of documentation gathering, and a whole lot of persistance on your part. If you need help filling out paperwork, please ask someone to help you. In the end, if you really need the assistance, the time and work it takes will be well worth it! One of the oncology nurses said most people don't get the help they need because they just aren't willing to put in the time it takes to fill out the paper work. I explained to her that most of it is quite difficult and time consuming, especially for someone who doesn't feel well.
She agreed ... so we encourage you to get help in filling out the paperwork if that's your situation.
Also, please keep in mind - the hospital where you are being treated also has some kind of financial assistance. All the hospitals we've encountered have called it "Charity." It may be called something else at your particular hospital but ask for the financial aide office, billing, social worker. They will not offer it to you without you asking. Sometimes, if you're speaking to someone in the wrong department, they will tell you there is no assistance available (as was the experience of one of our KCW'ers).
If any of the links are not accurate, please email KCW at kidneycancerwarriors@ yahoo.com and inform us. We will be happy to correct the link or delete it if it no longer exists. I put this list together in February in one day and then lost the info on my original Resource Blog and am just now copying it from my documents back over to the current KCW Blog. It's a long list. Unfortunately, it will take you a lot longer calling the different agencies, filling out the paperwork, providing the required documentation....than it took me coming up with the list of financial assistance organizations available. It is our prayer, with this list you'll find what you need a little faster! Please don't get discourged and don't give in; if you need help, it is our belief you should receive that help! Be persistant! It's not always easy to get that which should be rightfully yours - health care and assistance obtaining it. Something needs to change but for now, please use the assistance programs that are available!
For starters, those of you with and without health insurance, might want to start with looking into Charity at the hospital where you are being treated. And, if you have insurance, the Patient Advocacy Foundation Co-pay Assistance is another great place to start to obtain the needed assistance. KCW can personally recommend both of these as being extremely helfpul!
