When you hear you have been diagnosed with cancer, emotions and a whirlwind of worry kick in.
There may be fear of the unknown and worry about finances and your family and diagnosis.
Full disclosure: I am not a medical doctor or a healthcare practitioner. This is not medical advice. These are tips that I have learned from cancer patients and doctors in my years in healthcare.
When you are diagnosed with cancer, there is a whirlwind of questions.
What to expect?
What now?
How will I feel?
There are many things to think about and iron out.
Here are some tips to help streamline your cancer journey.
- Ask your doctor to order your baseline imaging for you so you have your results by the time you see your oncologist. If not, then you will see your oncologist and not know if cancer is in other areas of your body. You will then need to have your imaging scheduled and wait for the results and a follow up appointment to get your results.
If your doctor orders a CT biopsy and a diagnostic CT scan, ask if they can be done at the same facility at the same time. This will save you a stick-one IV for both appointments on the same day.
Not one IV and a CT scan on one day and then another IV and CT biopsy on another day. The IV is for IV dye needed for the CT scan and the IV for the CT biopsy would be for IV sedation.
Not to mention, this will save you time as both exams are done on the same machine. This will depend on the facility as not all facilities do CT biopsies. This is a way to streamline your CT guided biopsy and CT scan appointment when newly diagnosed with cancer.
Some biopsies are done with a CT scanner so the doctor can see the tumor or area of interest with imaging. Some biopies can be done with an Ultrasound machine, such as a fine needle aspiration of a thyroid nodule in your neck.
2. Take a copy of your most recent lab work to your imaging appointments. This will save you a lab appointment as they need a Bun and Creatinine result for the IV contrast needed for your CT scan.
IV contrast can be hard on kidneys so you need to have normal kidney function. This is checked by your lab work. It is usually part of a Basic Metabolic Panel or a Comprehensive Metabolic Panel.
3. If your doctor orders a PET/CT, let them know if you are claustrophobic. Most PET/CT scanners are long narrow tubes but not as noisy as an MRI scanner.
If your doctor orders an MRI, please let them know if you are claustrophobic. This is the long tunnel that everyone talks about. Some exams are long and the machine is noisy.
4. Work with your doctor to have sedation called into your pharmacy in advance of your appointment. Follow directions for your medications prior to your appointment.
MRI stands for magnetic resonance imaging. It has a strong magnet so you cannot have an MRI if you have certain metal clips, screws, beebee’s, wires, or bullets in your body. Immediately let your doctor know what kind of metal you have in your body. You usually are screened for an MRI exam to see what kind of metal you could potentially have in your body.
When multiple exams are ordered, arrange to have them done in the same facility on the same day if possible. This will allow them to be down in the correct order, saves you time, saves you a stick. One IV for all appointments in one day. You can have a bone scan and a CT scan in the same day. This is very common.
You can also have an MRI and a CT scan on the same day in most cases.
Sedation is not always automatically given. The #1 question we receive is “aren’t you going to give me something to knock me out?”
Your doctor has to order sedation, whether it is a pill to help relax you or IV sedation. It has to be requested in advance so ask what to expect with your doctor.
Doctors do not always order sedation that you may expect, just local anesthetic for the biopsy site and maybe a moderate sedation for CT biopsies.
This sedation is usually given through your IV and can help relax you. A careful screening of your health history and allergies will be done at the facility to see what kind of sedation you can or cannot have.
Biopsies can be done in ultrasound, cat scan(CT) or in a doctor’s office. Sometimes a biopsy can be done while you are having a colonoscopy. You see, there are lots of ways a biopsy can be done.
How will you feel?
If you were feeling fatigued or losing weight, you may continue to feel fatigued. This may have been what made you visit your doctor in the first place. Some people lose weight or report fatigue. Sleeping more than usual or loss of appetite is reported.
Some patients have energy and feel fine but a tumor was noticed on an x-ray or a lump felt on an exam by their doctor. Many patients continue to work and receive treatment at the same time.
Your doctor can work with you to see if you need to take time off from work to start your chemotherapy. You can see how you feel with the treatments and work with your employer.
Most patients do not have constant pain. Some patients have pain where their tumor is pressing near their spine or a tumor in their bone. But a breast cancer lump may not be painful, it is just felt. Some lung cancer patients can point to where their pain is and that is exactly where their tumor is.
5. Ask your doctor what to expect.
Your doctor will give you the big picture. Nurses can teach you general information and also have a plethora of information. If you choose chemotherapy, there are chemotherapy teaching classes that teach you what to expect and what to bring.
6. Ask a patient who has the same kind of cancer you have what their journey has been like. Join a cancer support group for extra information. You will be surprised how much you learn from other patients.
Social workers can give you information on resources for emotional support, travel information if needed, and mental health resources. If you need financial assistance, there are resources so never be afraid to ask.
7. Port placement
This is a handy device that is placed in your chest in a surgical procedure usually done in a hospital setting. It can be placed by a surgeon or a radiologist. It is usually triangular shaped or round and has a catheter that is tunneled under the skin into a major vessel near your heart. It heals and then it is used for your chemotherapy infusion, IV fluids, or blood draw. It can be used for IV contrast injection for a CT scan as well.
This port will replace the need to start an IV in your arm every time you come in for a chemotherapy infusion. This saves your veins over your lifetime. It is one stick and done.
Patients keep these devices implanted for as long as needed. Your doctor can advise you how long to expect to keep your port. Some patients keep them for years for their follow up appointments and follow up CT scans.
8. Cancer is usually treated with surgery, chemotherapy, and or radiation.
Some cancers do not need all three forms of treatment. Some cancers only involve surgery. Some cancers are only treated with radiation. Some early stage colon cancers can be treated with surgery alone if caught early enough.
Cancer can happen anywhere in your body. There are skin cancers, brain cancers, neck cancers, lung cancer, colon cancers, gynecological cancers, and so on.
9. Family worries.
Your family or friends may be worried or stressed as well. Be there for them as they are there for you. Cancer affects the family as well so keep that in mind as you go along your treatments.
For your children, Wonders and Worries is an organization that helps children understand what you are going through at their age level of understanding. They often would set up tours at our cancer center for children to visit.
10. Lots of appointment at first.
You will have multiple doctor appointments at first. If you get a second opinion then there are more doctor appointments for that doctor.
Common scenarios:
- Initial primary doctor appointment for your symptoms
- Imaging appointment to see what is wrong
- Yearly follow up with your primary doctor and abnormal labs seen
- Follow up appointment to get your results
- Imaging appointment to evaluate abnormal labs
- Follow up appointment for imaging results
- Referral to oncologist
- Oncologist appointment
- Biopsy scheduled
- Imaging appointments for baseline imaging if not already done
- Follow up appointments to get results from biopsy and imaging
- Surgeon referral if needed
- Radiation Oncologist referral
- Chemotherapy teaching appointment
- Port placement appointment
- Radiation therapy appointments
- Most patients say the number of appointments calm down the third week after you are diagnosed
11. Radiation Therapy
Once you have seen your radiation oncologist(doctor who specializes in radiation therapy planning for your cancer), an appointment is made for CT Simulation. This appointment will involve a making of a mold of your body or use another device to help keep your body in the same position for radiation therapy. A CT scanner is used to take images of the area of your body needed for radiation planning.
Many molds are “flat bean bag shaped” and you lie onto the flat bean bag and air is vacuumed out to form the shape of your body. For head and neck cancers, a mask is usually made of your face and locked into place. These are plastic mesh like and are warm when first placed over your face.
They are then locked into place so your head cannot move during treatments.
Radiation therapy is usually done daily Monday-Friday for however many weeks needed. Some cancers involve 6 weeks of radiation and some four weeks. Bone tumor that is metastatic may only require 2 weeks of radiation for a total of 10 treatments. Some radiation treatments are done concurrent with chemotherapy.
Markings will be drawn on your body or can be tattooed so they will not wash off. Care of your markings will be given to you at this appointment.
Your treatment plan will depend on your individual cancer and status. Your doctor will advise you on what is needed.
Radiation nurses teach you skin care and what to do and what not to do for your skin while on radiation. Usually you see your radiation doctor weekly while on radiation for skin checks.
12. Cold packs for your fingers and toes.
There is a chemotherapy tip where you wear ice packs on your feet and hands to try and reduce neuropathy. This is a great patient given tip. The cold packs can be ice packs or gel packs for your feet and hands but must be very cold. There are cold gel slippers and cold hand mittens you can purchase.
13. Cold cap therapy.
There is a cold cap that can be put on during your chemotherapy to help prevent hair loss. It is connected to a machine and you wear the cold cap during your chemo treatment. You can ask your doctor is this is right for you.
14. Anti-nausea medications.
Work with your doctor to see what nausea meds work for you. Ginger candy or ginger chews are great to try. They are widely available on Amazon and local supermarkets.
Try sniffing a peppermint candy or an alcohol prep pad to reduce nausea sensation.
15. Food may taste like cardboard during chemotherapy.
Patients often report that food tastes like cardboard while on chemo. You may lose your sense of taste. Ask patients around you and nurses what can be done to help with this. Smells may make you nauseous as well. Work with a nutritionist to keep eating healthy and know what to eat while on treatment.
16. You need to stay hydrated.
Many patient get dehydrated quickly during treatment. Patients often report not drinking enough water. DRINK WATER every day so you do not get dehydrated. During your visits please ask how much water you should drink on a daily basis.
17. Expect lots of lab work appointments.
Part of your care involves checking lab work routinely. This can be complete blood count checks, tumor marker checks, metabolic panel checks and so on. Urine samples are also sometimes needed.
Your oncologist will work with your primary doctor for your care. If you have a cold call your primary doctor. If you suspect symptoms are cancer related or cancer treatment related then call your oncologist. Ask questions at every appointment so you get the most out of your visit.
I hope these tips help you know what to expect.
Not everyone has the same experience as another patient.
You will meet many patients in the waiting room and you will learn a lot from them as well. We used to have a group of patients who scheduled their appointment times around the same block of time so they could “socialize”. One patient would come in for radiation as the others talked. The patient who was coming off the radiation table would go back to the waiting room and socialize as the other patient would go in for their treatment.
I have seen many strong relationships grow from people who met each other in the waiting room so who knows what your journey will look like.
Social hour? New friends?