Archive for IMPORTANT INFO TO KNOW

When It Comes to Cancer, Unknown is Unacceptable…

Molecular profiling, biomarker testing and targeted therapies are changing the way physicians treat cancer patients.  In the not-too-distant future, experts agree that cancer will be defined and treated based on each person’s unique molecular profile and biomarkers rather than the body part where it first originated.  Until this happens, oncologists must rely on knowing the part of the body where the cancer started (known as the primary site) to guide their treatment plans.

 

So what happens when a person is diagnosed with cancer and doctors do not know it’s primary site?

 

Each year 45,000 – 75,000 US cancer patients are diagnosed with metastatic disease but the primary site (the part of the body where the cancer started) cannot be determined. This is known as “cancer of unknown primary” or CUP.  In some instances, physical examination, detailed blood tests and various imaging scans can help determine the primary tumor location.  In other cases, doctors are forced to use their best guess and treat accordingly. As a result, the prognosis of patients diagnosed with CUP is poor.

 

If you’ve been diagnosed with Cancer of Unknown Primary, check out the Rosetta Genomics Cancer Origin Test. The Cancer Origin Test uses highly sensitive technology to measure the level of microRNAs in a tumor sample to determine the primary tumor location.

 

How accurate is the Cancer Origin Test? In a nutshell, I’d say it’s pretty darn accurate.  In a study of 509 tumor samples, 82% of the samples tested using the Cancer Origin Test produced a single predicted origin with 90% accuracy.  In another study, 84 CUP patients were tested and results from 77 patients predicted a single origin with 92% accuracy.*

 

The Bottom Line… The origin of your cancer can have a big impact on your treatment plan.  If you’ve been diagnosed with Cancer of Unknown Primary (CUP), ask your doctor which test(s) he or she plans to use to diagnose your cancer.  The Cancer Origin Test can yield results in just 4-7 days enabling doctors to provide patients with their best treatment options quickly.  If your doctor is not familiar with the Cancer Origin Test, let them know about it. The right diagnosis can save your life. 

 

BTW, many insurance companies including Medicare now cover this testing. For those patients who may not be able to afford testing, Rosetta Genomics has a Patient Assistance Program (PAP).   For more information, call their Customer Service at 1-215-389-9000 or US Toll Free at 1-888-522-7971.

 

*Rosetta Genomics
*Meiri E., Mueller W.C., Rosenwald S., A second-Generation MicroRNA-Based Assay for Diagnosing Tumor Tissue Origin, The Oncologist 2012
*Pentheroudakis G, Pavlidis N, Fountzilas G, et al. Novel microRNA-basedassay demonstrates 92% agreement with diagnosis based on clinicopatholoic and management data in a cohort of patients with carcinoma of unknownprimary. Mol Cancer June 2013

 

Personalizing YOUR Cancer Treatment (part 4): Do you know your cancer biomarkers?

Personalized-Medicine

In the near future, instead of saying, “I have breast cancer,” a patient will say something like , “I have a HER2-positive carcinoma with a KRAS mutation.”  Cancer will be defined by it’s own unique molecular profile and biomarkers rather than the body part where it originated.

To learn more about the dozens of biomarkers already being used to guide cancer treatment, check out the table below. Please note: there are thousands of known biomarkers without currently known effectiveness or relevance to cancer care. This table only represents the biomarkers that are currently known to be significant in informing cancer care today.*

Biomarker About Cancers that may benefit from testing Treatments associated with response or lack of response/resistance*
ALK anaplastic lymphoma kinase, an enzyme that can form a oncogenic fusion gene with EML4 lung (non-small cell), lymphoma (anaplastic large-cell), nervous system (familial neuroblastoma) crizotinib (Xalkori®), pemetrexed (Alimta®)
AR androgen receptor, part of the nuclear hormone receptor superfamily, active in cell signaling and therefore cell multiplication and growth prostate, breast, ovarian, bladder, lung (non-small cell) bicalutamide (Casodex®), flutamide (Eulexin®), goserelin (Zoladex®), leuprolide (Lupron®), abarelix (Plenaxis®), gonadorelin (Factrel®)
BRAF also know as v-raf murine sarcoma viral oncogene homolog B1, a proto-oncogene in the RAF/MIL family of molecules active in MAP/ERK cell signaling, promotes cell multiplication and growth colon, skin (melanoma), lung (adenocarcinoma), thyroid (papillary thyroid carcinoma), nervous system (pleomorphic xanthoastrocytomas with and without anaplasia) cetuximab (Erbitux®), panitumumab (Vectibix®), vemurafenib (Zelboraf®)
BRCA1 a so-called “breast cancer gene”, its expression in many cancers can indicate potential response to certain types of therapies lung, ovarian cisplatin (Platinol®)
c-Kit cytokine receptor also know as CD117, a proto-oncogene that interacts with cell growth factors, plays a roll in cell survival, multiplication and differentiation GIST (gastrointestinal stromal tumor), skin (melanoma), blood (acute myelogenous leukemia) imatinib (Gleevec®), sorafenib (Nexavar®), sunitinib (Sutent®)
c-MET also known as MET (mesenchymal epithelial transition factor) or HGFR (hepatocyte growth factor receptor), a proto-oncogene active in cell signaling, promotes cancer cell growth and multiplication lung (non-small cell), ovarian erlotinib (Tarceva®), gefitinib (Iressa®)
COX-2 cyclooxygenase-2, also known as protaglandin-endoperoxide synthase-2 (PTGS2), an enzyme important to creation of prostaglandins, which are messenger molecules that play a role in many cancers lung (non-small cell) celecoxib (Celebrex®)
EGFR epidermal growth factor receptor, also known as ErbB-1 or HER1, a receptor tyrosine kinase active in cell signaling, promotes cell growth and multiplication lung (non-small cell) cetuximab (Erbitux®), erlotinib (Tarceva®), gefitinib (Iressa®), panitumumab (Vectibix®)
EGFR secondary mutation (T790 M) a mutation of the EGFR gene associated with acquired resistance to certain treatments lung (non-small cell), colorectal, head and neck resistance to erlotinib (Tarceva®), gefitinib (Iressa®)
ER estrogen receptor, part of the nuclear hormone family of intracellular receptors, active in cell multiplication breast, ovarian, female genital tract cancer anastrazole (Arimidex®), exemestane (Aromasin®), letrozole (Femara®), tamoxifen (Nolvadex®), megestrol acetate (Megace®, Megace® ES), fulvestrant (Faslodex®), toremifene (Fareston®), medroxyprogesterone, (Provera®, Amen®, Curretab®, Cycrin®), goserelin (Zoladex®), leuprolide (Eligard®, Lupron®, Viadur®)
ERCC1 excision repair cross-complementation group 1, an enzyme active in DNA repair and therefore a sign of resistance to treatments that work by disrupting tumor DNA lung (non-small cell and small cell), gastric, ovarian, colorectal, bladder resistance to cisplatin (Platinol®), carboplatin (Paraplatin®), oxaliplatin (Eloxatin®)
HER2 human epidermal growth factor receptor 2, also known as HER2/neu or ErbB-2, a receptor tyrosine kinase active in cell signaling, promotes cell growth and multiplication breast, gastroesophageal, gastric, ovarian, colorectal lapatinib (Tykerb®), trastuzumab (Herceptin®), doxorubicin (Adriamycin®, Rubex®), liposomal doxorubicin (Caelyx®, Myocet®), epirubicin (Ellence®)
KRAS proto-oncogene of the Kirsten murine sarcoma virus, active in cell signaling in the EGFR pathway, promotes cell growth and multiplication lung (non-small cell), colon, pancreatic cetuximab (Erbitux®), erlotinib (Tarceva®), gefitinib (Iressa®), panitumumab (Vectibix®)
MGMT O-6-methylguanine-DNA methyltransferase is a gene that encodes a DNA repair enzyme, loss of MGMT may play a role in cancer formation, MGMT can also interfere with treatments that work by disrupting tumor DNA breast, lung (non-small cell), esophageal, brain (glioblastoma multiforme, oligodendrogliomas), skin (melanoma), pituitary gland (carcinoma) lack of response to temozolomide (Temodar®)
MRP1 multidrug resistance-associated protein 1, an ATP-dependent transmembrane drug efflux pump associated with resistance to many drugs breast, lymphoma, head and neck lack of response to anthracyclines such as doxorubicin (Adrimycin®), vinca alkaloids, and methotrexate (Trexall®)
PGP p-glycoprotein, also known as P-gp, an ATP-dependent transmembrane drug efflux pump associated with acquired resistance to many drugs breast, ovarian, lymphoma, head and neck lack of response to anthracylines such as doxorubicin (Adriamycin®), epirubicin (Ellence®) and liposomal-doxorubicin (Doxil®), and other drugs such as paclitaxel (Taxol®), docetaxel (Taxotere®), vinblastine (Velban®), vincristine (Oncovin®), vinorelbine (Navelbine®)
PIK3CA a specific mutation within the PI3 (phosphoinositide 3) kinase pathway or a gene copy number variation, aberrations along the PI3K pathway are associated with many cancers colorectal, brain (glioblastoma), gastric, breast, lung, ovarian lapatinib (Tykerb®); resistance to cetuximab (Erbitux®), panitumumab (Vectibix); decreased response to trastuzumab (Herceptin®)
PR progesterone receptor, also called PGR, part of the nuclear hormone family of intracellular receptors, active in cell multiplication breast, ovarian, female genital tract cancer letrozole (Femara®), tamoxifen (Nolvadex®), fulvestrant (Faslodex®), toremifene (Fareston®), exemestane (Aromasin®), anastrozole (Arimidex®), goserelin (Zoladex®), gonadorelin (Factrel®), leuprolide (Eligard®, Lupron®, Viadur®), medroxyprogesterone (Provera®, Amen®, Curretab®, Cycrin®), megestrol acetate (Megace®, Megace® ES)
PTEN phosphatase and tensin homolog, a tumor suppressor active in EGFR, HER2 and AKT cell signaling pathways breast, colon, lung (non-small cell), brain (glioblastoma), head and neck low expression associated with lack of response to cetuximab (Erbitux®), gefitinib (Iressa®), trastuzumab (Herceptin®), panitumumab (Vectibix®), erlotinib (Tarceva®)
RRM1 ribonucleotide reductase subunit M1, an enzyme required for DNA synthesis from RNA and therefore can interfere with treatments that work by disrupting RNA activity lung (non-small cell), pancreatic high expression associated with lack of response to gemcitabine (Gemzar®), hydroxyurea (Hydrea®, Droxia®)
SPARC secreted protein acidic rich in cysteine, a protein active in tumor growth and spreading skin (melanoma), breast, gastric, pancreatic, head and neck albumin-bound paclitaxel/nab-paclitaxel (Abraxane®)
TLE3 a member of the transducin-like enhancer of split family of proteins, implicated in creation of tumors breast, ovarian taxane therapy such as paclitaxel (Taxol®), docetaxel (Taxotere ®)
TOPO2A topoisomerase IIA, an enzyme active in DNA synthesis and repair breast, colon, ovarian, lung (small cell) doxorubicin (Adriamycin®), epirubicin (Ellence®, Pharmorubucin®), liposomal doxorubicin (Caelyx®, Myocet®)
TS thymidylate synthetase, an enzyme active in DNA synthesis and repair, can be inhibited by certain compounds breast, colon, gastric, head and neck, liver, pancreatic, lung (non-small cell) lack of response to 5-fluorouracil (Adrucil®), cytarabine (Cytosar-U®), pemetrexed (Alimta®)
TUBB3 Class III -tubulin, protein found in microtubules which are important cell structures ovarian, lung (non-small cell) taxanes such as paclitaxel (Taxol®), docetaxel (Taxotere ®), vinca alkaloids such as vinorelbine (Navelbine®)

* Biomarker status (overexpressed, underexpressed, positive or negative for specific mutations, etc.) determines whether that biomarker is associated with response, lack of response or resistance to each treatment. Treatment associations are from published, peer-reviewed medical literature. Citations available upon request. Only your doctor can decide which treatments are appropriate for you.

**Got questions about YOUR biomarkers, e-mail PatientNavigator@carisls.com.  A Patient Navigator who is well versed in molecular profiling and biomarkers will answer your questions.  (this is a FREE service provided by Caris Life Sciences.) 

*** Source:  MyCancer.com (an educational resource sponsored by Caris Life Sciences®) is a fantastic website for cancer patients and their caregivers that provides information about personalizing your cancer treatment using molecular profiling and cancer biomarkers.

Personalizing YOUR Cancer Treatment: Questions to Ask Your Oncologist (part 3):

Molecular profiling to identify cancer biomarkers has the potential to identify new treatment options for your cancer. As with any treatment selection, you and your Oncologist need to work together to determine what will work best for your particular situation.  Below are questions you can ask your Oncologist to begin the conversation on personalizing your cancer treatment:  

MyCancer.com – Questions to Ask Your Doctor

What Does It Mean to Personalize Your Cancer Treatment? (part 2)

 

FACT:  Over the past 40+ years, oncologists have taken a “one size fits all” approach to treating cancer.  The only efforts at personalization have been to tailor specific chemotherapies to the original location of the cancer. 

 

FACT:  We know that two people with the same cancer diagnosis often times respond differently to the exact same treatments.  Researchers have found that the genetic differences in people and their tumors explain many of these different responses to treatment.

 

FACT:  Because each person’s cancer is unique, finding the right treatment can be difficult.

 

FACT:  You may have heard the terms “targeted therapy”, “personalized therapy” or “precision therapy”.  These are simply different terms for individualizing cancer treatments.  Regardless of what you call it, personalizing your cancer treatment will require some form of advanced genetic and molecular tumor analysis (called molecular profiling). 

 

FACT:  Molecular profiling searches for unique genes, proteins and molecules (called cancer biomarkers) that provide information about how your particular cancer functions.  This information can help identify potential treatments to guide doctors on which medications are likely to work best for a specific person’s cancer. 

 

To learn more about molecular profiling, cancer biomarkers and personalized treatment, check out these 2 fantastic sites:

MyCancer.Com

Is My Cancer Different?  

 

To speak with a Patient Navigator about molecular profiling, please e-mail PatientNavigator@carisls.com.  This is a FREE service provided by Caris Life Sciences.  

 

 

Personalizing Your Cancer Treatment (part 1)

Personalized-Medicine

 

I’ll never forget the heartbreaking moment when we heard Alan’s cancer was not cureable. In fact, my heart just skipped a few beats as I recall that day. One of my very favorite doctors (Dr. David Sidransky of Champions Oncology) told us not to give up hope. He explained that the oncology community was making great strides in turning cancer into a manageable disease rather than a death sentence. He said, New medical advancements that personalize cancer treatments are exploding.  The key is to be alive when the next breakthrough is discovered. So let’s figure out how to extend Alan’s life so that he has a shot of being here when that breakthrough happens.”

 

Fast forward to today-4 ½ years later- much progress has been made in personalizing cancer treatments.  Although still not considered mainstream, personalized medicine is absolutely changing how cancer drugs are developed and prescribed and how many cancer patients are treated.  Over the next few weeks, I will be writing a series of posts about breakthroughs and medical advancements that help doctors personalize cancer treatments such as molecular profiling, biomarker testing, immunotherapy, tumorgrafts and more.  If you read a post that resonates with you, share it with your doctor as you can help guide decision making when it comes to your own healthcare.  You are your own best advocate!

 

 

 

Applying for Social Security Disability Benefits with Cancer

 

Meet GUEST BLOGGER Ram Meyyappan. Ram is the senior editor and manager of the Social Security Disability Help website.  Social Security Disability Help contains information on how to apply for disability with over 400 conditions, helpful tips, FAQs along with an extensive disability glossary.

 

If you are a parent suffering from any type of cancer, the condition or the effects of the treatments you are undergoing may make it difficult to take care of your kids, let alone returning to work. In such cases, financial assistance may be available through one of the two Social Security Disability programs. There are two disability programs available to those who qualify under the SSA’s disability criteria. These include the SSI (Supplemental Security Income) program and the SSDI (Social Security Disability Insurance) program.

SSI

SSI is a needs-based program. In order to be eligible, you must be deemed disabled by the Social Security Administration and you must meet certain financial criteria. As of 2013, to qualify for SSI, you must not earn more than $710 as an individual or $1,060 as a couple. You must also not have assets that exceed $2,000 as an individual or $3,000 as a couple.

SSDI

Unlike SSI, SSDI is not a needs-based program. There are no financial criteria to meet. You must, however, have earned enough work credits through your previous work history. In order to have enough work credits to qualify for SSDI, you must have worked five of the past ten years. If you are not old enough to have worked five of the past ten years, you need to have worked half of the time you were able to do so.

Cancer and Meeting the Medical Requirements

The SSA uses a manual called “the blue book” to evaluate whether or not a condition qualifies for disability benefits. Cancer is covered in Section 13 of the SSA’s blue book under Malignant Neoplastic Diseases. Just being diagnosed with cancer alone does not mean that you will qualify for benefits unless it is a type of cancer that is listed in the compassionate allowances program. In most cases, the cancer has to be inoperable, have distant metastases (has spread), or be recurrent after surgical procedures or irradiation.

You will need to prove through your medical records and work history that your cancer prevents you from working at the job at which you were previously working or any other job for which you are qualified.

Qualifying Under the Compassionate Allowances Program

Certain types of cancer can qualify for Social Security Disability benefits in less than two weeks under the SSA’s Compassionate Allowances program. Under this program, individuals who are suffering from very severe conditions can bypass the standard disability claim process and be approved for benefits a lot faster. You will need a physician’s opinion stating that the cancer is not operable or an operative note stating that the cancer was not completely resected in order to qualify under this program. If an operative note is not available, a pathology report indicating positive margins can be used. When applying for benefits, make sure you include this medical documentation and make it clear how you qualify for benefits under the Compassionate Allowances guidelines.

There are numerous cancers that are listed in the compassionate allowance program. For a complete list of all compassionate allowances conditions, please visit: http://www.disability-benefits-help.org/compassionate-allowances.

How to Apply for Social Security Disability Benefits

You can apply for Social Security Disability benefits online or in person at your local Social Security office. Make sure that you have all of the medical evidence that you will need at the time of your application. While the SSA will have you fill out forms that allow them to request copies of your medical records, it is always best to submit medical records on your own as a part of your application to ensure that the SSA receives complete documentation that supports your disability claim.

Top 3 Tips for Survivorship

312472_10151358550057350_739587518_a

In honor of National Cancer Survivor’s Day, Arash Asher, MD, a cancer survivorship expert and director of the Cancer Rehabilitation and Survivorship program at the Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute recommends incorporating the 3 tips below into daily life…

1. Avoid social isolation and chronic loneliness

Chronic loneliness can change a patient’s biological makeup, possibly increasing the chance of recurrence as well as higher death rates, Asher said. In fact, according to Asher, chronic loneliness is as dangerous as smoking cigarettes and more dangerous than physical inactivity or obesity. If patients surround themselves with positive and supportive friends and relatives, however, they can increase their longevity and quality of life, Asher said.

2. Tailored, moderate exercise

Exercise offers a myriad of benefits to any individual, but may be even more valuable to cancer patients and survivors, Asher said. Unfortunately, fewer than 50 percent of cancer survivors achieve their pre-cancer level of exercise, and many patients never talk about physical activity with their physicians. At the Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute, exercise specialists design workouts formulated for each patient’s abilities. Asher suggests that just like the benefits of a support system, exercise may improve the quality and quantity of life.

3. Get enough sleep

Americans often view sleep as a luxury and rest is one of the first things to be sacrificed if time doesn’t permit. Asher said that not getting enough sleep has serious consequences, including chronic illness and possibly an increased risk in cancer. Multiple studies have found that nightshift workers have a higher percentage of breast, colon and prostate cancer, as well as cognitive issues, and a higher risk of obesity and physical limitations. Half of all cancer survivors have some form of insomnia. The Cedars-Sinai Cancer Rehabilitation and Survivorship program works with these survivors to determine the cause of insomnia and then takes tactical steps toward managing these issues.

According to Dr. Asher, incorporating these 3 steps into a daily routine can help to improve overall quality of life as well as improves chance at survival.  For more information, visit the Cedars-Sinai website.

(Source:  Top 3 Tips for Survivorship)

Innovative Research + Funding = Hope

 

During the summer of 2009, my husband was diagnosed with pleomorphic rhabdomyosarcoma.  One year later, at the young age of 47, he died.  Throughout that year, we had some of the top cancer researchers in the world working on Alan’s case.  Their efforts gave us hope that we would overcome Alan’s cancer.  This hope gave us the strength to get out of bed every day and enabled us to endure more pain and disappointment than I care to remember.

 

Despite the fact that Alan passed away, I believe that cancer is a disease that can be cured.  Although much progress has been made in the war against cancer, we still have a long way to go.  Medical research that is taking place right now continues to fuel my hope that one day we will live in a world with NO cancer.

 

CONSANO (v) to heal in Latin

 

Meet CONSANO.org, a nonprofit crowd funding platform (founded by breast cancer survivor Molly Lindquist) that enables individuals to donate any amount- small or large- to specific medical research projects they feel passionate about.

 

Here’s how CONSANO.org works:

1. Browse the list of projects & choose one (or more ;-) ) that mean something to you.  All projects have been reviewed by members of Consano’s volunteer Scientific Advisory Board to ensure that a project is legitimate, easily understood, relevant, and has the potential to lead to improvements in patient care.

 

2. Donate any amount directly to that project.  100% of your donation (minus a 2.2% PayPal processing fee) will go directly to support that project.

 

3. Receive quarterly updates from the researcher through the lifecycle of the project.  AMAZING!

 

Also check out the CONSANO blog… It features stories written by patients, family members, and friends- anyone touched by an illness.  By sharing our stories, we can help provide inspiration, hope, and a strong sense of community to others navigating their own journey.  If you’d like to share your story on CONSANO, please email info@consano.org.  To read mine & Alan’s story, click HERE.

10 Things Patients Should Know Before Having Surgery

 

images-1FACT:  Surgeries and hospitals are designed to improve a patient’s health.

FACT:  Although hospitals, clinics, and doctor’s offices take many steps to keep their patients safe, medical errors happen. According to National Cancer Institute, medical errors account for 98,000 deaths per year in the United States alone.

FACT:  The more information and knowledge we (as patient advocates, concerned family members, caregivers) have about an upcoming surgery, the better able we are to help prevent medical errors (wrong medication, wrong surgery, unnecessary procedures) from happening.

The Empowered Patient Coalition suggests these 10 things patients & their advocates should know BEFORE having surgery:

  1. DECIDING ON SURGERY: Why is the surgery needed? How successful is the surgery in correcting the problem and what are the potential short and long term risks? What will the recovery process be like?
  2. CHOOSING A SURGEON: Ask about the surgeon’s experience with this particular surgery and check his or her credentials online. Is the surgeon board-certified in the specialty you require?
  3. WHERE TO HAVE YOUR SURGERY: Check your hospital online at www.QualityCheck.org or www.HospitalCompare.hhs.gov. Does the hospital have an Intensive Care Unit (ICU) and a Rapid Response Team (RRT) to respond to emergencies?
  4. SCHEDULING YOUR SURGERY: If possible, schedule your surgery for early in the day and early in the week. Try to avoid having procedures on major holidays, nights or weekends.
  5. SURGERY AND RECOVERY: Who will actually perform the surgery? Will assistants or residents be participating, and if so, to what degree? Will the surgeon be in town and available in the days after surgery?
  6. ANESTHESIA: Will your anesthesia be handled by a board-certified anesthesiologist or a certified nurse anesthetist? Who will be assisting them?
  7. PREPARING FOR SURGERY: Patients should not shave surgical site for 2-3 days before surgery to prevent small cuts in skin where bacteria can enter. Patients must not eat or drink for 6 to 8 hours before surgery.
  8. THE DAY OF SURGERY: Be sure all information on the patient’s ID band is accurate. Have all pre-operative medications, including antibiotics, been ordered and given? Be sure the surgeon signs the surgical site before the patient is sedated.
  9. ONCE SURGERY IS OVER: Have an advocate present to discuss details and ask if there were any complications with the surgeon after the surgery is over. Be sure the patient is kept warm and ask if the patient needs specific treatments to prevent blood clots.
  10. PAIN CONTROL: If the patient is using a PCA (patient controlled analgesia) pump, be aware that malfunctions can occur and watch for signs of an overdose, including shallow breathing, extreme sleepiness and small pupils. Be aware that pain medications can cause severe constipation so ask about precautions.

 

 

 

6 Things I Wish I’d Known About Cancer

Image credit: 123RF Stock Photo

Image credit: 123RF Stock Photo

 

I’m beyond honored to tell you that I am now also blogging for the Huffington Post.  In case you missed my first article that I wrote for them, I am reposting it here on CancerHawk.

 

Wrapping your head around the fact that you or a loved one has cancer is no easy task. After my 46-year-old husband was diagnosed with a very rare and aggressive cancer in 2009, we were in a state of shock and paralyzed with fear. Nevertheless, we had to research treatment options, meet with doctors, schedule multiple surgeries, and start chemotherapy all in a matter of days. Talk about overwhelming! Below are six things I wish we had known at the beginning of our cancer journey:

1. Always, always get a second opinion.

No ifs, ands or buts about it: When it comes to cancer, two heads are better than one. Second opinions will either confirm what you’ve already been told or present different options to weigh. Regardless, second opinions can help to reduce the chance of misdiagnosis and provide greater peace of mind. If the two opinions you’ve received differ, get a third one. Remember, it is a patient’s prerogative to speak with as many professionals as he or she chooses. If you’ve been diagnosed with a rare cancer, I urge you to also seek recommendations from doctors who specialize in that particular cancer.

2. Be choosey.

Being best friends with your doctor is not required. You don’t even have to like your doctor. But you do have to trust their care and feel comfortable talking to them about anything related to your health. If you don’t, find a new doctor immediately. For us it was also important that our doctor be both a realist and an optimist. Eventually, we left our first oncologist for these reasons.

3. Talk to your doctor about molecular profiling.

Two people with the same cancer can and do respond differently to the exact same treatment regimens.Why? Because each person’s cancer is unique. Identifying unique genes, proteins and other molecules (called cancer biomarkers) can provide information about how your particular cancer functions and can be used to help identify potential treatment options. Molecular profiling is especially key if your doctor is choosing between multiple recommended treatments, or if your cancer is particularly aggressive or rare or has limited treatment options, or if your first-line treatment isn’t working. To learn more, visit MyCancer.com and IsMyCancerDifferent.com. Both sites have loads of helpful information on personalizing cancer treatments.

4. Visit a dentist prior to starting cancer treatments.

It’s important to see a dentist who really understands cancer before beginning treatment or as soon after diagnosis as possible. Chemotherapy, radiation therapy and immunosuppressive treatments like bone marrow transplants and stem cell transplants can exacerbate existing dental and oral problems, as well as create new painful and potentially dangerous ones like mouth sores, ulcers, inflections, bleeding, etc. Dentists who are knowledgeable about cancer and its effects on oral health can help minimize these risks before they pose serious problems.

5. Understand the goal of your cancer treatment.

Make no assumptions when it comes to your health or treatment plan. Not all treatments for cancer are given with the intent to cure. Treatment can also be given to help prevent disease recurrence, to minimize symptoms of disease, or to simply prolong survival. Knowing the goal of your particular cancer treatment and the potential risks associated with that treatment will enable you to make the most informed decisions possible about your care.

6. If you don’t know where to turn for help, talk to an oncology navigator.

Until recently, I had no idea there existed professionals who can help a cancer patient navigate their way through this diagnosis. Oncology navigators are skilled in helping cancer patients overcome obstacles to treatment (financial challenges, insurance and employment issues, managing daily life, evaluating treatment options, etc.). They work to help patients get the best care possible.

Where can you find an oncology navigator? Some hospitals and private oncology practices have an oncology navigator on staff. Another option is the LIVESTRONG Cancer Navigation Center, which provides free one-on-one support to anyone touched by cancer, regardless of age or type of cancer. The National Coalition of Oncology Nurse Navigators can also help connect patients to a free navigator in their area. Navigators are very helpful in uncovering resources that you may not know about otherwise.

Although I have no regrets in how we managed Alan’s care, I do wish we had fully understood the extent of what we were dealing with at the beginning of our cancer journey. I wish we had understood the importance of the six tips I wrote about above. If you know someone who has been diagnosed with cancer, please pass this article on to them. Knowledge is power… please share the power!