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, during treatment, and if you decide to end treatment, rather than what is going to happen.  For example this article will not tell you how ovarian cancer works.  Instead it will show you the things you need to know during the three main stages of the disease.  This article does not cover, however, extended remission ("cured") because most Oncologists typically focus on keeping Ovarian Cancer a managable disease due to the constraints of the current science.  By starting these steps, you can assist yourself (or loved one) in going down the right path in lightness when it appears dark and murky.


If you'd like to contribute to future revisions of this article, please contact me.

• Step 1:  Ensure You Get All The Right Tests
• Step 2:  Get an Experienced Gynecologic Oncologist
• Step 3:  Surgery Options
• Step 4:  Journals
• Step 5:  Get Your Pathology Report and Other Reports
• Step 6:  Chemotherapy Options
• Step 7:  Pain and Constipation Control
• Step 8:  Complimentary Treatment
• Step 9:  Ending Treatment
  
  

• 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).  The FDA only officially approves the CA-125 test for treatment monitoring, not diagnosis.
  

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 by monitoring glucose (sugar) uptake by tumors).  Sometimes you can get a PET/CT Scan which is an advanced test that combines the CT-Scan and PET scan so the radiologist has the best of both scans to make the most clear analysis possible.  This test, however, is not widespread since it requires a special machine that does both.
  

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), part of the organs, and lymph nodes (cancer travels via the lymph nodes to other parts of the body, thus they are debulked as well if they have suspected cancer spread).

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 Reports and Other Reports
 

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! 



Step 6:  Chemotherapy Options
 

There are many chemotherapy options out there, yet you will most likely be given Taxol and Carboplatnim (Carboplatinum) during your first cycle because it's the most proven, and effective, chemotherapy for Ovarian Cancer.  That being said, your first cycle is the 'make or break' in beating the cancer.  If your cancer goes into remission after the first cycle, you are halfway done as then it will be either: 

1. If you can get through a few months of remission (typically six) you will be considered platinum sensitive so you can use a platinum drug again.  This is a good thing.
2. If you don't get through a few months (less than three typically) you will be considered platinum resistant meaning the cancer has learned to defend itself from this drug.  This means you will not be able to use platinum drugs again, although research shows that 'weekly' dosage of carboplatnim works on platinum resistant patients³.
3. If you go five years without a recurrance (cancer returning) then you will be considered to have 'beaten' the cancer as the five year mark is a standard in monitoring your progress ('cured').  This does not mean, however, that the cancer is actually gone because there is no adequate way to find any microscopic cancer cells floating around...it simply means either (or both) your chemotherapy and body have worked together to stop any further progression for an extended period of time.  This is a good thing.

There is a new combination that shows hope during first line chemotherapy by adding Avastin to Taxol and Carboplatnim⁹.  However Avastin is known to increase intestinal perforation by 7%¹⁰ so your physician must do tests (and continued monitoring) before giving it to you.  Patients in that study either had a partial response rate of 50% or complete response rate of 30%...some high numbers.

More often than not, Ovarian Cancer is discovered in stages above Stage I, meaning it has spread outside of the ovaries.  This means it's unlikely that you will actually be cured, yet the oncologists work towards managing the disease which is quite an improvement from the bleak prognosis of such patients in the early 20th century.  In the early 21st century, there has been a movement towards taking Ovarian Cancer seriously and having drugs specifically designed for it.  Although many are still in research or FDA clinical trial stages still, you have several options if you have a recurrance:

• Weekly Carboplatinum³
• Doxil® and Eloxatin®⁴   (Anticancer response in 54% of patients, 67% of patients who had achieved an anticancer resp;onse for at least 6 months following prior platinum-based thereapy, 29% for those who experienced cancer progression within 6 months of platninum based therapy.  Overall srurival was nearly 16 months.  Medium time to cancer progression was 7.3 months.  Most side effects were mild and manageable.)¹¹
• 5FU (Folfox) and Eloxatin (This regimen was presented at the 2007 ASCO Annual meeting with good results (58% positive response rate) including complete remissions for recurrent, resistant or refractory heavily pretreated patients) ⁵
• Doxil and Trabectedin⁶
• Doxil and Avastin
• Flavopiridol and Cisplatin (complete or partial tumor regression)⁸

Now those are only current, FDA approved, chemotherapies.  There are many in FDA clinical trials you can take such as Phenoxodil (which is in Stage III for platinum resistant ovarian cancer, one of my favorite ones) or others in the drug 'pipelines' of research labs.  Your physician can help you find a clinical trial should you ever want to be on one; the advantages being you are trying a new drug that may hold promise while the downside is that most do not know the complete effectiveness or dosage of effectiveness yet.  You will also be dropped like a stone with any cancer progression (i.e., you will not be allowed to remain on the drug even if it's doing you any good, they are just trying to determine toxicity and time until cancer progression).

During treatment there are several ways to reduce nausea and vomitting to include Zofran (considered the best in class) among others.  Recently the FDA cleared "Sancuso" (granisetron) patch for chemo induced nausea and vomitting.   This is excellent since the study says it's basically equivalent to the effectiveness of 'oral' pills of the same class (such as Zofran) or Aloxi.  www.sancuso.com



Step 7:  Pain and Constipation Control

Also there is one huge point I want to make while you are in treatment:  NEVER BE IN PAIN.  There is never a reason you cannot have adequate pain control, however many doctors are terrified to give the appropriate level of medication.  Insist on seeing a pain specialist if you cannot get the pain control you need from your physician.  The American Cancer Society and the National Cancer Institute both state there is no reason cancer patients should ever be in pain.  There are many drugs besides morphine (such as dilaudid or patches like fentanyl) which can assist, as well as combinations of pain drugs.  When it really gets bad, you may ask for a PCA or a device that infuses pain medication from a pump right into your bloodstream either by you pressing a button or automatically infused.  You can have this in the hospital or at home, but both will require a 'port' (such as a PICC line) where it can infuse into.

• Many physicians are scared to perscribe more pain medication for cancer patients because either 1) they believe the patient will become addicted (they will not) or 2) they will be sued if the patient dies from the increased dosage.  In response to conern #2, many States have laws that allow physicans to perscribe more pain medication and not be sued over it (for example, Nevada allows this).  Refer to your State laws if you and your physician are at odds over this or better yet get a new physican (an educated physician should know what the ACS and NCI have already stated on this issue) or ask for a referral to a pain specialist.
• If you are having consistant pain despite increased dosage, look into the 'SPRAY' trial that is investigating a drug that is being evaluated for this specific purpose.  If the drug is successful, it will mean that cancer patients with uncontrollable cancer pain may find relief.  www.spraytrial.com
• There is no reason to have constipation from opioid induced pain medication (such as morphine or dilaudid/hydromorphone).  'Relistor' (methylnalterxone) is FDA approved to 'block' the receptors these drugs typically bind to which causes the constipation.  So toss out the stool softeners and get something that prevents the problem in the first place!  Talk to your physician about this drug if you are taking opioid pain medications.

Step 8:  Complimentary Treatment


Many cancer patients look to supplements and other complimentary treatments during their conventional cancer treatment.  Based on my personal research, I recommend five supplements to use with conventional treatment (never take in place of conventional treatment):

• Maitake D-Fraction 
• Coenzyme Q-10 (CoQ10)
• Genistien & I3C  (Soy Isoflavones / Dark Green Vegetables)
• Turmeric
• Omega 3 (Fish Oil)

Some of these may not be compatible with your chemotherapy drugs (so consult with your oncologist), but most are.  For instance CoQ10 is important to take with Doxorubicin (also 'Doxil') as that drug affects the heart and CoQ10 has shown in some studies to help prevent heart damage.  Maitake D-Fraction is my favorite and shows no drug interactions or safety concerns (bypassed FDA Phase I toxicity studies due to it's safety record) unless you are allergic to mushrooms or have an auto-immune disorger.  Omega 3 is useful according to studies in preventing the 'wasting syndrome' experienced in cancer patients. 

I have articles on a few of these (more are in the works) that explain how they work and more in-depth information in a summary style article.  You can find them in the 'Ovarian Cancer' category of my articles.


Step 9:  Ending Treatment


There are two outcomes, either you are progressing well and are in remission for more than five years (typically considered 'cured' if there is No Evidence of Disease for this long), however most Ovarian Cancer patients have to settle (currently) for having extended remission periods and trying new chemotherapies.  Because there is limited choices in chemotherapy for Ovarian Cancer, it is always important to review this step if you are ending treatment (most do this when their body simply cannot stand the stress of the toxic chemotherapy, although everyone is different). 

Nobody likes to talk about this step, and I didn't want to even think about it when my mom was going through her treatments (and lack thereof), but it must be considered.  Most Ovarian Cancer patients are diagnosed at Stage III meaning advanced progression of the disease.  A cure is usually not an option at this stage, but managing the disease is.  Despite the best efforts of modern medicine, there may be a time when the disease becomes resistant to all the effective chemotherapy options and the disease will progress unchecked.  This is not the time to be considering what is known as 'end of life' decisions, it should be done early so this final stage will be less stressfull.  Based on my experiences, I would recommend the following:

• Ensure a will (or trust if you have property) is completed and notarized / filed with the court.  In many states probate is not needed depending on how much you have in money or certain property.
• Have a health care power of attorney / directive completed.  This allows a family member, friend, etc. to make decisions on your behalf and it also specifies if you want to be on life support or not.  This is VERY important so everyone knows your wants in such a situation; don't let your family stress over a decision you know about but they did not.
• Bank accounts:  If you know who you want to have your money, you can make them a co-owner which will eliminate issues.
• Bankruptcy:  If you have little or no health insurance, you will more than likely have lots of debt.  Look into bankruptcy earlier rather than later when you may be too weak to attend mandatory meetings.
• Hospice:  You can have hospice services in home rather than at a facility, which can allow you a much more relaxed aptmosphere.  Many health insurance compaines have such services as well as non-profits which can give you the best of both worlds:  in home hospice with in-patient hospice when you need it.  Hospice can be used in lots of circumstances and it does not mean you are giving up, for instance if you get better you can leave hospice services and go right back into treatment...but you cannot have treatment (unless it helps to control pain, etc.) during hospice services.
  

If you, however, are cured or are in an extended remission you may consider yourself 'out of treatment' as well.  The best thing you can do is reclaim your body with many methods such as mind/body healing (people enjoy meditation, yoga, etc.) and appropriate nutritional support.  There is an excellent drink called 'Juven' (makers of Ensure) which is specifically designed for Cancer and AIDS patients to help their bodies recover from cancer and the stress chemotherapy put on their bodies (it's great during treatment as well).  Ensure you follow your physicians instructions when you enter remission and also ask for a referral to a nutritionist and physical therapist if you need it.  Some also find comfort in seeking a religious paths such as discussing your experience with your clergy or simply talking to God or whatever higher spirit you believe in.  Your goal is to get your body, mind, and spirit back into shape!



Conclusion


While being diagnosed with Ovarian Cancer is scary and may feel like a death sentence, there are things you can do to chart your succeess with this disease.  Although your outcome is unknown, and not even your doctor can make that perdiction, knowing that there are options you can take and discuss with them can empower you to fight this disease.  It is important to recognize that Ovarian Cancer is not something foreign, but was created by and from your body and to come to accept that you had nothing to do to cause this and you are not being punished.   This article is of course not all inclusive, but it should give you a quick guideline of what to do in many circumstances.  I wish you the best of success in fighting this horrible disease and I hope this article has empowered you!



Disclaimer


The information provided on this site is for informational purposes only and is not intended as a substitute for advice from your physician or other health care professional or any information contained on or in any product label or packaging. You should not use the information on this site for diagnosis or treatment of any health problem or for prescription of any medication or other treatment. You should consult with a healthcare professional before starting any diet, exercise or supplementation program, before taking any medication, or if you have or suspect you might have a health problem. You should not stop taking any medication without first consulting your physician. These statements have not been evaluated by the FDA. These products are not intended to diagnose, treat, cure, or prevent any disease.

References & Citations  (All Accessed On:  May 19th, 2007)
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
³ http://meeting.ascopubs.org/cgi/content/abstract/23/16_suppl/5137
⁴ Recchia F, Saggio G, Amiconi G, et al. A multicenter Phase II study of pegylated liposomal doxorubicin and oxaliplatin in recurrent ovarian cancer. Gynecologic Oncology. 2007; 106:164-169.
⁵ http://www.asco.org/portal/site/ASCO/menuitem.34d60f5624ba07fd506fe310ee37a01d/?vgnextoid=76f8201eb61a7010VgnVCM100000ed730ad1RCRD&vmview=abst_detail_view&confID=47&index=y&abstractID=34542  
⁶ http://esciencenews.com/articles/2008/09/15/ovarian.cancer.drug.trial.reveals.promising.new.treatment  
⁸ http://www.sciencedaily.com/releases/2007/10/071023163911.htm
⁹ http://professional.cancerconsultants.com/oncology_main_news.aspx?id=40453  and:  Micha JP, Goldwtein BH, Rettenmaier MA, et al. A Phase II study of outpatient first-line paclitaxel, carboplatin, and bevacizumab for advanced-stage epithelial ovarian, peritoneal and fallopian tube cancer. International Journal of Gynecological Oncology. 2007; 17:771-776.
¹⁰ Wright JD, Secord AA, Numnum TM, et al.  A multi-institutional evaluation of factors predictive of toxicity and efficacy of bevacizumab for recurrent ovarian cancer. International Journal of Gynecological Cancer.2007; early on-line publication on July 21, 2007.
¹¹  http://www.ufscc.ufl.edu/Patient/cancernews.aspx?section=cancernews&id=36164  and:  Nicoletto M, Falci C, Pianalto D, et al. Phase II Study of Pegylated Liposomal Doxorubicin and Oxaliplatin in Relapsed Advanced Ovarian Cancer. Gynecologic Oncology. 2006; 100: 318-323.