You could be anywhere...in the emergency room, at the doctors office, at home when the phone rings. No matter how you
receive the news that you may or do have ovarian cancer, it is a life changing moment.
Ovarian Cancer is the most dangerous of all gynecological cancers because it's symptoms are masked as other less dangerous conditions and there is typically no outward signs of cancer until later stages. So when you receive the news you are, more often than not, terrified.
There are lots of things to consider and do when first diagnosed for both you and your caregiver(s)/family. This article will always be under development as we receive tips and suggestions from others who have been down this path. It is designed to tell you what you need to do in the beginning, rather than what is going to happen. For example this article will not tell you how ovarian cancer works, what your treatment options will be, etc. Instead it will show you the five most important things (at least to me) that I have found to be the most helpful when the diagnosis first comes in. By starting these steps, you can assist yourself (or loved one) in going down the right path.
Remember, these are only the first 5 steps. The next articles in this 3 part series will include "In Treatment" and "Remission or Recurrance".
If you'd like to contribute to future revisions of this article, please contact me.
STEP 1: Ensure you get all the right tests
Many women do not get all the tests they need, so you may not know if you have ovarian cancer or not. At a minimum, you should be receiving:
- CT-Scan (typically with contrast via IV and possibly barium that you drink)
- X-Ray (A traditional scan, but less detailed than a CT-Scan)
- Ultrasound (Used mainly to look at the ovaries)
- CA-125 (This blood test is used to see what your cancer levels are for ovarian cancer. Although not conclusive, it is used as part of the overall testing process. Normal levels are 0 to 35).
Advanced Tests:
- PET Scan (This is a more detailed scan that is sometimes offered, but not always. It takes much longer than a CT-Scan but is useful in detecting cancer throughout the body)
STEP 2: Get an experienced Gynecologic Oncologist
This year, approximately 23,100 women will be diagnosed with ovarian cancer, and an estimated 14,000 women will die of the disease. Fifty percent of women diagnosed with ovarian cancer will die from the disease within five years, an unacceptably high mortality rate that can, in part, be mitigated by access to proper specialty care. Over the past two decades, research has shown that referral to a gynecologic oncologist remains one of the top factors in increasing ovarian cancer survival rates, as well as decreasing rates of recurrence.1
You should research as quickly as you can (depending on the severity of your cancer) for the most experienced Gynecologic Oncologist even if it means leaving your geographic area. Those who perform the most surgeries are better able to identify cancer during surgery and, as the paragraph above stated, improve your survival rates. Even if you don't get a Gynecologic Oncologist for your surgery, you can still seek them out post-surgery as they are specialists in this type of cancer.
STEP 3: Surgery Options
You and your Gynecologic Oncologist need to discuss what is going to happen during surgery. Typically they will perform, in addition to a hystderectomy, surgical debulking. This means they will remove as much cancer (tumors) as possible which means they may remove body organs (typically in the abdominal area).
Heated IP Chemotherapy
During surgery, you can also have chemotherapy drugs put into your abdominal area ("IP" or "Intra ) especially heated IP chemotherapy2. This results in a greater chance of fighting your cancer, yet may have risks. Only your surgeon can tell you if this is right for you (and if the hospital has the equipment to do it).
Genetic Testing / Chemosensitivity Testing
This is your first and last chance to get your tumors genetically tested, but it varies by hospital. Many hospitals may keep your tumors for future testing purposes while many will simply have the pathology report done on them and be done with it.
Genetic testing is coming more into the limelight with the advent of vaccines for ovarian cancer in clinical trials. If you want genetic testing done, you must request it now and demand it. Your insurance will probablly not cover it, so be prepared to pay for it yourself. (I found this one by doing a google search, but have no opinion either way on it: http://www.cancergenetictest.com/ ).
Most advanced testing facilities can also test different chemotherapy options on your tumor sample. By doing this they are able to demonstrate which chemotherapy drugs have the possibility of being more effective than others. There is controversy over this, however it may be worth exploring with your oncologist.
You may also be able to go on one of the vaccine clinical trials and get this done for free or via the Cancer Treatment Centers of America if you are having them perform your surgery/treatment.
STEP 4: Journals
Why would you want to start a journal? Several reasons:
- Record your daily symptoms and progress
- Identify future appointments
- Track side effects
- Understand later on when you had issues, success, etc.
- Therapeutic
There are many ways to do this. One way I found very effective was to print out a calendar. You can do this from your email program, tempates on Microsoft's website, etc. Either way stick with journaling, it will help keep you organized and better prepared to talk about side effects and your treatment with the oncologist.
Calendar
When using a calendar, you have little boxes to work with. I found just doing summaries works wonders for helping to remember what happend that day. It can also be used in addition to a written journal to track side effects, mood, appetite, etc. For example maybe you are having trouble with vomiting...record each day how many times you threw up. Or maybe pain is an issue, use each day to record your pain scale (1 to 10), what brought it on and what dosage worked for you. For my mom, I have a complete day-by-day account of almost everything that happened. Because the space is so small for each calendar day, I make sure highlight only the most important events (this can include whatever is important such as vomiting, bowel movements, doctor appointments, mood, issues, etc.).
Written Journal
Use this to record more about each day. For example issues you had with staff at the hospital, notes to ask the doctor, or whatever you want. It's a healthy outlet to get out your feelings and record what happened. This is also important for caregivers to do should you feel too unwell to do it or they can start their own (I did). If you have a Pocket PC or other handheld device, you can use the note feature on it to write down what is going on and later upload it/sync it to your home computer. I used to do this while at the hospital so I could write down more detailed information to transcribe over to the calendar and to keep on file.
Notebook
Helen Schmitz emailed me about how she keeps a record of her progress:
"I think it is important to keep a notebook of all your reports. I have a notebook that is divided in categories. These categories are: cat scans, blood reports, pathology and whatever else may pertain to you. I also have a cover sheet so this makes it easy when going for a second opinion."
STEP 5: Get Your Pathology Report and Other Records
You will get a mixture of cooperation from physicians in your path. They will be either very helpful to you or you'll end up doing all the work in understanding what is happening to you.
One important step is getting your pathology report(s). This includes everything from blood tests to the actual examination of your removed organs and tumors. You request this from the hospital and you are allowed it under HIPPA regulations. Hospitals may charge you a fee for the copying, you can ask how much this will be in advance (many will simply provide it to you free of charge).
While you are at it, simply request all your medical records. This will save you time and give you insight into all of what happened. You will get to see your CA-125 counts, surgeons notes, etc.
If you can't do it, have a friend get everything scanned for you and put on CD and then place these into a USB thumb drive so you can take them to your doctors office or to the emergency room. It pays to have everything readily available!
References & Citations
1 http://www.ovariancancer.org/index.cfm?fuseaction=page.viewPage&pageID=512
2 http://www.surgicaloncology.com/psmmeth.htm
Ovarian Cancer Vaccine Studies (one example): http://ovariancancer.jhmi.edu/research.cfm
Alan that was a very informality article l read all your posts thankyou your are a champion l read all your article kind regard Jayne