What to do?
We have all been there.
Maybe you are here because you think you might have bladder cancer, but you are not sure.
Maybe you are here because a tumor has been found, and you are waiting on tests and surgery to find out what the next step is, or if you have bladder cancer.
Maybe you just got your pathology report, and it is definitely cancer, but you are overwhelmed with how to even start this journey.
Maybe you are here because you are in the middle of treatment and you are not getting enough information from you doctor.
No matter the reason, more information will help! I'm glad you are here. We are in this together.
This blog was created as a way to try and give back to those coming after me. Bladder cancer is not a well-known cancer, and many doctors are not forthright with information.
Most of us don't have cancer centers where they have huge teams of people and social workers to help you figure things out. Unfortunately, you are going to have to figure out a lot on your own. I have made articles on this blog to help you figure this out. I was a nurse for 15 years, and my husband is a physician. I have a knack for taking medical information and translating into normal speak.
I hope this information is helpful. 💗
You Might be Grieving
Hearing the word cancer is terrifying. Bladder cancer is a lifelong journey. It is not curable. When you have No Evidence of Disease (NED), it means that right now you don't have bladder cancer in your body. However, you will keep a close eye on your bladder the rest of your life. So make sure you always go to your follow-up appointments.
Bladder cancer is a sneaky bitch and likes to come back.
Many people call this the "forever cancer" because of how long treatments go on, and how often it comes back.
It took me a couple of months to realize after I saw that tumor on the screen at my urologists office, that all that I had been feeling and going through, was actually a greiving process. There is a lot of loss when it comes to bladder cancer. Give yourself plenty of space, time, and grace as you go through this. There will be a lot of complex and intense emotions. Process them, and let them flow. If you try and be full of sunshine and rainbows all the time, you will end up with psychological problems. It's not healthy to stuff our feelings and hide them.
Feel your feelings!
That being said, I do know that there is incredible power in positive thinking. So try your best to not stay in the anger, depression, and denial stages. That can also be detrimental.
Process those emotions, let them flow and shift inside you, let yourself feel it and grieve your losses. Journal, talk to a therapist, talk to loved ones. You can do this!!
Article: Cancer and the 7 Stages of Grief
I love what one bladder cancer patient said about waiting:
"One thing I didn’t understand when I started my bladder cancer journey was the waiting, I was so mad they weren’t moving faster but I found out later there a lot of protocols. So when they do biopsy also know as TURBT, you wait to have BCG to you heal, then there seems to be long waiting between appointments. Seems like every step forward there a lot of down time, and that real bothered me."
Waiting is the worst! I had some pretty traumatic experiences concerning waiting. I think we all do as we are going through this journey and this process. It's normal to feel all of this! So much of it is you are learning as you go. I have a lot less worry and anxiety if I understand what my journey will be like. That is the purpose of this blog. To help others that are coming behind me, to better see where all of this leads.
Article: Waiting and Staying Present With Bladder Cancer
What Doctors Will I see and in What Order?
It really depends on where you are at with this journey of what doctor you will see first. Some people find blood in their urine and go to the ER. Some people go to their Primary Care Physician. That is what I did.
Article: Primary Care Doctor Visit - Something is Amiss
Most of the time, a urologist (a physician that specializes in the urinary tract) will want you to have an evaluation by the ER or primary care physician before seeing them. I didn't know what to expect on my first visit to the urologist, and I wrote about that if you are interested.
Article: What to Expect on Your First Visit to the Urologist
Be sure to contact your insurance company BEFORE you go to a urologist. I had a nightmare of an experience including a $9500 bill, because my urologist said they were "in network" and found out they were the lowest teir of my network, which created another $9500 in out of pocket expenses!!
So learn from my mistake, please contact your insurance to make sure you can see your urologist, and if you get surgery, that the hospital you are having surgery at is also in your network.
After you see a urologist, you might see an oncologist, or a urology oncologist. It can be confusing about what type of doctor you should choose for what problem.
Article: What Type of Doctor Should I Choose for Bladder Cancer Treatment?
After your surgery, your tumor will be sent to a pathologist. That is a physician that will look at your tissue samples under a microscope, and determine if the tumor is cancer or not, and if it is cancer, what type, grade, and stage.
Article: Pathology, Pathologists, Pathology Report and Bladder Cancer
Article: Bladder Cancer Types, Stages, and Grades
What Tests and Procedures Should I Expect?
One of the most common symptoms that people first have with bladder cancer is blood in their urine. This is called hematuria. They will find blood in your urine by doing tests on your urine. You will be peeing in lots of cups. The test done on the urine is called a urinalysis. There are many other signs and symptoms that are common with bladder cancer. See the articles below for more information.
Article: Urinalysis (UA) and Hematuria - Blood in Your Urine
Article: Bladder Cancer Signs, Symptoms, and Side Effects from Treatments - Definitions and Abbreviations
During this diagnosis time, your doctors are trying to figure out what is wrong with you. Lots of test will be done. I already told you about a urinalysis. Every doctor you see will have you do this. During bladder cancer treatments, every time you see one of your doctors anticipate that they will have you pee in a cut. You might get an ultrasound, and your urologist will most likely order a CT scan and/or CT Urogram. Once a year to once every two years after you are being treated for bladder cancer, you will be getting a CT scan to make sure there are no cancers in your upper urinary system.
Article: What is a CT Urogram (CAT Scan)?
The gold standard test to diagnose bladder cancer is a cystoscopy. Please bring someone with you when you do this. I was 41 years old when I was being evaluated for bladder cancer, and my CT scan came back clear. I was not expecting to see cancer at my cystoscopy, be we found a tumor, and it was one of the worst and most terrifying days of my life, and I was by myself with a jerk of a doctor.
Article: Cystoscopy, Cancer, and What to Expect
When you get a cystoscopy, most of the time you will also have a urine cytology ordered. It's a urine test in which they are looking for high grade cancer cells in your urine.
Article: Urine Cytology and Bladder Cancer
After a cystoscopy, you will most likely have a surgery called a TURBT (Trans Urethral Resection of Bladder Tumor). There is a whole lot of information about that surgery, and recommend you read about it in the article. I write about my experience and that of other cancer patients as well.
Article: What to Expect with a TURBT
If you have really advanced cancer and there are concerns that your cancer has spread to other parts of your body (called metastasis), your doctor might order a PET scan.
Facebook Bladder Cancer Groups
I didn't think to join one of these, until after I was a couple months into this journey. I'm actually glad that is what happened. They are super helpful, and you get really great advice, and you can cheer lead for your other fellow cancer patients.
- BUT -
They are probably going to scare the crap out of you. You will see stuff on there that will probably overwhelm you and really scare you. You will see the worst case scenario stuff, and you will also see beautiful miracles.
You know yourself. If getting on these groups is causing anxiety instead of helping to inform you and inspire you, maybe you should get off or pass.
Here are my favorite Facebook groups:
Education
Article: Questions to ask Your Health Care Team for Bladder Cancer
It might take some time to be able to really start to dig into educating yourself about all of this. Here are some great places to start:
- NCCN guidelines for Patients 2021 - Bladder Cancer
- Bladder Cancer Advisory Network (BCAN)
- BladderCancer.net - great articles written by experts, and patients that are currently in treatment for bladder cancer or have been in the past.
- PDF from BCAN Intravesical Immunotherapy with BCG
- PDF from UptoDate Patient Education: Bladder Cancer Treatment; Non-Muscle Invasive (superficial) cancer (Beyond the Basics)
- Fight Bladder Cancer - UK
Other Articles From This Blog
In these articles I have tried my best to include advice I wish I would have known. I put in those things I hear from other cancer patients as well. I am a nurse, and have done my best to help translate medical speak, in a way that you will better understand. I hope it helps. 💗
Bladder Cancer Glossary - Organized by Topic
Bladder Cancer Types, Stages, and Grades
BCG Information and Advice for Non-invasive Bladder Cancer
I can't Pee! BCG and Acute Urinary Retention
Ta, Stage 0, Grade 3, Non-Invasive Papillary Carcinoma
Difference Between Rigid and Flexible Cystoscopy
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