Guidelines at Diagnosis or Relapse

Last update: 08/07/2010

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ON THE PAIN OF DIAGNOSIS and
RUSHED DECISIONS:

 "Somehow there are some doctors who think that after they tell you "you have cancer" you are supposed to be calm and completely rational and not even think about crying. The first oncologist  I went to described me as hysterical and thought I should take immediate treatment "if only to calm yourself and let you believe you are doing something." 

I think he was hysterical.  Not me. I reacted like any person hearing that diagnosis would.  Sad, angry and confused.

The period immediately after diagnosis is the exact wrong time to make a decision. Fortunately, with low grade NHL you have the luxury of some time to think.

I took some time, saw two other oncologists and they both told me to do nothing, that the survival statistics showed that early intervention did not improve survival. I left the first oncologist.

 That was five years ago.  I need treatment now, but am happy that I didn't panic and let the first oncologist dictate what would have been an awful choice for me." 

- Ronnie - (NHL-follic)

ON HOW EASILY MISTAKES CAN HAPPEN - THE IMPORTANCE OF HAVING SOMEONE WITH YOU, AND NOT ASSUMING: 

HS on Cyberfamily wrote:

Yesterday I went for a biopsy on my mesentery (an abdominal sheath), and as I was having my b/p etc checked one nurse said to the trainee, she is having a liver biopsy.....I said no, not me....she went and checked, came back and said they were wrong, it was the mesentery. 

When a second nurse came to give me something for pain etc, she said, oh, a liver biopsy! I said NO, that is the other lady in the next bed....so this nurse checked, and then wrote mesentery on my file, which had said liver.... How easily mistakes can occur...its scary....

OVERVIEW:
Before Diagnosis | Biopsy | The Pathology Report | Encouragement and Support | Choosing a Doctor | Prepare for Consults ... and more.

This topic is for individuals or loved ones who have just been diagnosed - or just prior to the diagnostic evaluation.

A lymphoma can be a serious disease, but treatment can range from curative to highly effective at managing it as needed- depending on the type and its aggressiveness. 

The rarer subtypes requires more attention than most diseases since expertise is less common, so you may need to get more involved with your diagnosis and treatment and seek also an expert to advise your treating physician.  

For the indolent lymphomas it can be more likely that you will die with the lymphoma than from it. So let's get started on your new study project. Here are the steps we recommend you take as soon as possible.
 

Before Diagnosis
 

Most enlarged lymph nodes are not lymphomas and the symptoms of lymphoma are common to other non-malignant medical conditions, such as infection.      See Lymphadenopathy: Differential Diagnosis and Evaluation American Family Physician for details on how enlarged lymph nodes are assessed, or when observation is recommended. Only a biopsy can determine if a an enlarged lymph nodes is a lymphoma (and what type) or if it's due to a normal reaction to an infection.

Biopsy

The biopsy - the taking of a sample of the cells fore evaluation) is essential to making an accurate diagnosis. 

Also, if feasible: go to a center that can snap-freeze a portion of the tissue for advanced diagnostics and participation in  research, which is vital to making progress against lymphomas.

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Encouragement & Support

Probably nothing in life is more stressful than the diagnosis of a cancer, and it makes you wonder if we were meant to know (wired to know) too much about dangerous medical conditions - considering that during the majority of human evolution there were no diagnostic tests. 

What I think needs to be conveyed to the newly diagnosed (and their caregivers) is that blood cancers are generally more treatable/curable than other cancers, ... reversible even at advanced stages.

Depending on the type and grade, a lymphoma may be cured or it may be managed well - treated minimally as needed. 

There are about 30 or 40 types of lymphomas, but the two main categories are indolent (slow growing) and aggressive. The aggressive type (DLBCL, Burkitt's, etc.) is treated promptly with intent to cure. For the indolent type (follicular, MALT, etc.) the approach to treatment varies considerably - sometimes, but not commonly, treatment is never required. 

Lymphomas are systemic conditions ... the cell of origin being a lymphocytes, an immune cells, which by design can migrate anywhere in the body to fight infection. 

Normal lymphocytes react to an infection by increasing in number in order to disable a pathogen (bacteria, virus, fungus, etc). When the job is done, these cells self destruct or differentiate into other forms of lymphocytes. Indeed, when evaluating enlarged lymph glands it can be challenging for the pathologist to distinguish between benign reactive conditions and a lymphoma.

Lymphoma cells are abnormal lymphocytes that act similarly but have lost growth and survival controls. These cells (all clones of one cell) either grow too fast, or fail to self-destruct - the growth and survival is independent of immune function, or at least partially. 

See for more detail: http://www.lymphomation.org/about-lay.htm 

The good news is that lymphocytes, normal and abnormal, are generally highly sensitive to systemic therapies and radiotherapy. Consider how quickly normal blood counts drop in response to chemotherapy, even at low doses. Also, unlike solid cancers, there is a reserve of stem cells which will replenish the supply of blood cells after treatment, and these cells are less sensitive to standard therapies for lymphomas. 

See for treatment types: http://www.lymphomation.org/treatment-types.htm 

I hope this little overview helps to relieve anxiety a bit. This is not to say that lymphomas are not life-threatening conditions ... they most certainly are, or can be. And the risk varies by type, and within types - sometimes, for example, follicular NHL never needs treatment, but for most it does. But unlike other cancers, current therapies can be very effective, sometimes curative, and the outlook for additional clinical advances is genuinely bright.  More on this 

See the Encouragement page.

	Seek out real live folks in your community (see Support Groups) who have lymphoma and are in remission and/or are doing well. They will give you hope, information, and encouragement.  Judy writes: "I needed lots of time to read and integrate the fact that I had cancer."
	Talk to your doctor about your anxiety if it is persistent. There are very good new medications that have helped many lymphoma patients to enjoy life and to live well with lymphoma.    See Anxiety and Depression.

Find sources of HUMOR on a daily basis. 

Judy writes: "Living with Lymphoma is like a roller coaster, and I needed to learn to ride it rather than be terrified and constantly focused on it. Humor helps a lot."
   

Find ways to reduce anxiety and enjoy life.  Meditation, prayer, exercise can all help in this regard. Anxiety, while natural, can harm your quality of life, and perhaps interfere with your ability to make good decisions.  

Judy writes: "There is a positive aspect to anxiety if it motivates you to learn and seek the best help possible." 
  

	Get involved in supporting others and/or in advocacy projects.  These activities will help you to become a part of a larger community and give purpose to your situation. Advocacy will help to increase funding and direct the enormous talents of our scientists to work for us to create cures and management protocols that are safer and improve quality of life.
	Never give up! Lymphoma can usually be managed, sometimes cured, and ultimately, many experts believe, all types will be curable. Remember that what's safe and effective as therapy for someone else may not work for you, and vice versa.
	Review the information about life style provided here. There is some scientific data suggesting that some complementary approaches might be useful to improve quality of life and general health. Also the literature indicates that good health and performance is associated with improved survival.
	For guidance on insurance matters, drug payment help, or travel for treatment, visit our Support Section.

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Biopsy and Staging - The way that lymphoma is diagnosed

	It's vital to have a biopsy to obtain an accurate diagnosis. This is true at the first diagnosis, and when a relapse is suspected.   An accurate biopsy requires the surgical resection (removal) of an enlarged lymph node.   See Biopsy  and Bone Marrow Biopsy
	Ask to have a portion of the tissue snap-frozen. You can have this done at a later time as well, but the ideal time is when tissue is being taken to make a diagnosis.  Potential clinical uses:   1) for advanced diagnostics (present and future) which can be used to determine eligibility for clinical trials testing targeted drugs ... to see if our tumor contains the molecular pathways the agents target. 2) for creating therapeutics from the cells, such as cancer vaccines. See The Cooperative Human Tissue Network See NCI-designated cancer centers - Cancer.gov (in state order. Scroll down to list) Locate CLIA accredited laboratories by state:  IMPORTANT: Be sure to request a CLIA Certified Laboratory  - "defined as clinical diagnostic laboratories certified by the DHHS Health Care Financing Administration ... as revised by the Clinical Laboratory Improvement Amendments (CLIA)". http://ohsr.od.nih.gov   See also Snap Freeze
	Most experts hold that a fine needle aspiration does *not* provide adequate tissue for an accurate diagnosis.
	The diagnosis of lymphoma can take many weeks to complete. This is typically a very difficult and anxious time for the patient and family.    See Anxiety and Depression support page

Confirm the diagnosis

Receiving an accurate diagnosis is critical to getting the best care.

Have the diagnosis confirmed by a second pathologist who specializes in lymphoma, especially if there is any uncertainty in the pathology report or when the evaluation was not done by an expert in a major medical center. Also see Obtaining an Accurate Diagnosis - LRF

The slides of your biopsy can be sent to a second pathologist for confirmation of the diagnosis. Mistakes in initial diagnosis are more common than you might think!.

Monitoring tumor burden - imaging with CT, MRI and PET

Try not to get too anxious about modest changes in the size of lymph nodes from one scan to another. Many imaging tests cannot accurately distinguish between inflammation, tumor, and residual scar tissue. Your doctor will evaluate the meaning in the context of other indications. Also, for indolent lymphoma, the disease can wax and wane, and small changes can occur simply because of differences in techniques and angles used.  See Tests and Imaging.
 

Ask for a second set of film at the time of the scans. There is usually no additional charge if you tell them before they print them. When you are telling them where the report is to be send, also tell them, "I need my own set of scans to take with me to the Univ. of Wherever". They have been most cordial about it. I have all my CT and MRI scans in a closet. Yes, they are bulky and a pain to drag around, but mine are labeled PATIENT'S PERSONAL PROPERTY and I have them when needed. (Tip from Jama Beasely.)

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The Pathology report - you must ask for a copy

	It's essential to receive a copy of your pathology report.  Without it you cannot seek the advice of lymphoma experts. We believe it's important to consult with experts and to become informed about your type of lymphoma, and all available treatments in order to receive optimal care.
	An accurate diagnosis is a key to receiving the the best treatment as each lymphoma type can be treated very differently. Unfortunately an incorrect diagnosis is more common than we would like to think.    See Pathology - Getting a second evaluation

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Choosing a Physician and Consulting Outside Experts

	Choosing a knowledgeable oncologist, and having trust in his or her recommendations is very important.  Does your oncologist have experience in the treatment of your specific cancer?   conduct clinical trials, or is open to considering clinical trials?   actively participate in professional organizations dedicated to continuing education and professional development in the field?   have compassion and the ability to communicate and partner with you? NOTE:  Do not be afraid that seeking a second opinion will insult your doctor. Good doctors will be open to the perspectives of other good doctors.   Why should patients consult outside experts and become informed?  Even trained oncologists can have conflicts of interest, biases, or gaps in knowledge - especially if he or she does not specialize in lymphomas. Investigators may have an intellectual bias about an investigational therapy they are testing.  A community doctor might have a bias in favor of what is easiest to administer.  An HMO physician may prescribe what is least expensive. Another doctor might be influenced, unconsciously or not, by sales promotions from the drug industry.  Patients expressing their desire to continue working without interruption may influence a busy physician to prescribe what meets the immediate needs, without fully discussing possible negative long-term implications of that treatment decision ...    Still another reason to seek a second opinion is that it sets up a kind of peer review, which is likely to be an incentive for your local community doctor to be more focused on your care and the decision process. The good community doctor will encourage a second opinion by experts, and will be willing to carry out the recommendations, when possible ... or send you elsewhere when not.
	Locate an outside cancer expert with whom you can consult. David writes: "Very few people in our trial were "offered" the trial by their doctor . . .  For me  it was nearly instinctive NOT to settle for what was available locally, but look for what the options were anywhere in the US." See Choosing a specialist - LLS for outstanding guidance on this subject.  Sue writes: "If possible, seek second and third opinions – even if your "Health Plan" does not cover it."
	Contact the pathology department of  the center in which the biopsy was done.  Ask them for the slides, or if they can send the slides to the center you are going to for a second opinion. For second opinions at major cancer centers, having the slides is considered essential.
	Avoid alternative medicine doctors who promise they will cure you, and those who patently dismiss conventional therapies.  See Complementary and Alternative Medicine  See Evaluating Medical Claims and Data for tips about bias and conflict of interest, and what makes data strong or weak.  See When Lay Persons Give Medical Advice, for background on why it's important to rely on the guidance of medical professions, and not patient stories, when making treatment decisions.

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Prepare for Consults

Write down a concise description of your medical history and situation so the experts you consult can get up to speed quickly. It should include the following:   BASIC - Your age, weight, height, performance, child-bearing info etc.     DIAGNOSIS - cell type, grade, stage, markers (cd20, bcl-2 etc.) See Characteristics of  Non-Hodgkin's Lymphomas: Cell type | Histology | Grading | Staging   Call the pathology department in advance and arrange to pick up your slides. Bring the slides with you. This request is routinely asked of the pathology department.    TREATMENT HISTORY- including dates and types of treatment, treatment response, and duration of response.    MAKE a WRITTEN LIST of all your questions and give it to each expert you consult. This will ensure that all of your questions are answered. There are no bad questions! See and print out these resources pages: Bring List Locate Lymphoma Doctors  Preparing for Doctor Visits - a checklist Questions for Your Doctor - a checklist

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Treatment Decisions

NCCN Guidelines based on Lymphoma Type PDF (requires free registration)
NCI Evidence-based Best Practices Cancer.gov

	For Aggressive lymphomas: Aggressive combination treatments are often  recommended and the goal of treatment is often cure. See Treatment goals, types, outcomes and agents If the diagnosis is Diffuse Large Cell, new tests may soon be available to determine if you have a subtype that is sensitive or resistant to standard treatments.   Resources   Diffuse Large Cell lymphoma - Prognosis  Diffuse Large Cell Resource Page   Aggressive Lymphomas
	For indolent (slow growing) lymphomas:     Treatment is often deferred (watch & wait) until you become symptomatic (with symptoms), unless it is localized.  There is no standard treatment.
	Review the Watch & Wait and Treatment Decisions.   CAUTION: Be sure to carefully review the protocols with your doctor. Be certain to find out whether the use of the therapy is likely to preclude the use of other important treatments, should you need them.   Recommended reading: Experts Articles Identify the latest evidence-based best treatment practices for  your particular subtype of lymphoma.   Review options for protecting fertility prior to treatment, if  appropriate to your situation. Also consider clinical trials (see below).    Be prepared to change course.  Prepare alternate plans before the need to use them may occur.   Treatment decisions - factors that can influence treatment  goal, type, and timing

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Clinical Trials for me?

Clinical trials can be appropriate  as treatment decisions when they can compare favorably to other studies and available standard therapies – be reasonable treatment decisions for your clinical setting (first line, watch and wait, relapse...).  

Increasing participation in clinical trials is the only way to make progress against lymphomas and  this need is urgent.  Referrals to appropriate clinical trials are needed and increasingly expected by the patient community.

Permission from your doctor is not required in order to contact clinical investigators, and you are not being disloyal by doing so. We believe that good doctors will encourage such inquiries and will help you to select appropriate clinical trials.  

We recommend that you also seek treatment advice from independent lymphoma experts. This helps to ensure objectivity - some investigators may develop unintended biases, or have financial or professional motivations for recommending a particular clinical trial they may be recruiting patients for.  

Clinical trial types you may consider, based on settings:

	Alternatives to expectant management (watch & wait):   Agents and protocols with low / reversible / transient toxicity such as immunotherapy, or select targeted agents.
	First primary therapy:   Head-to-head studies comparing frequently prescribed protocols  where there’s genuine uncertainty about which is superior.    New uses, doses, scheduling of approved agents: Consolidations strategies - following initial therapy with treatment that enhances the first (example: augment immunity) Maintenance strategies following standard therapy New agent added to existing effective protocols Sequential therapy
	Refractory disease (not responsive to therapy):    Single agents with unique mechanisms. New combinations of agents with unique mechanisms
	Relapsed with poor bone marrow function / co morbidities   Targeted agents with low anticipated toxicity  Protocols with potential to stabilize progression

CAUTION: Carefully review the protocols with your doctor. Clinical trials are by definition tests of agents or protocols that have not been fully evaluated or compared to other protocols. 

	To help ask questions of your doctor, see and print:  Is a clinical trial  appropriate for me?.PDF
	Finally, our Clinical Trials Search tools can help you to locate studies. Search ClinicalTrials.gov for lymphoma trials by   Lymphoma type | Treatment type | Other | State or Country

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Learning about Lymphoma and Treatments

	Become informed about your type of lymphoma It's easier to assess the prescribed course of action if you have a basic understanding of the disease and the pros and cons of basic treatment options. Start with the Simplified Explanation of lymphoma. It will help you to understand the disease.   The About Cancer and Non-Hodgkin's Lymphoma provides more details about lymphoma, including staging and grading. The About Lymphoma page is always available for reference. Encouraging and informative Patient Stories are provided here. The Types of Lymphoma page contains information specific to the many of the subtypes of lymphoma. Please contact us immediately if information you are seeking is not found here.
	Become informed about standard and experimental therapies so you can better participate in the treatment decision process.   See Treatment Types for an overview of treatment types and goals. See Treatment Overview for many topics related to treatment.   Also review the Emerging Targets and Agents to a concise review what is new and emerging.
	Be sure to seek advice from a variety of reputable sources and consider carefully the source and the integrity of the information provider.    See Evaluating Medical Claims and Data  and  Our  Experience with Alternative Medicine

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When it's Time to Treat

	Consider first a second expert opinion if there is any uncertainty,  or even if not.
	Drug Administration Guidelines  bccancer.bc.ca
	Learn about the treatment and the expected side effect.    Review Treatment Decisions
	See Treatment Types for an overview of treatment types and goals.    See Side Effects and Cancer treatment support resource pages.   See Considerations at relapse - guidelines for patients, by patients.

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