Dealing with and Interpreting the News
Translating the language of lymphoma
The first weeks after diagnosis can be confusing and chaotic. You are trying to watch your dog every moment and to reorganize your life to accommodate a chemotherapy schedule. You have a steep learning curve: you have no knowledge base and a lot to learn. A flood of new information rushes toward you from veterinarians who know it well already and may not understand how confusing it sounds when you hear it from your chair in the waiting room. They generalize, and you want to know about your dog. You are full of questions, but forget to ask some of them when your dog reappears from the treatment area, eager to see you and accompanied by a bag of pills and a page of instructions. And even if you could remember to ask all your questions, you don’t really know whether the questions you have are the questions you need to be asking.
This chapter and the next contain essential background information to help you survive this difficult period, feel less confused, understand what you hear, and formulate questions you may want to ask. We also suggest additional steps you can take that may help you bring some order to the chaos.
Components of the Diagnosis – The Type of Lymphoma and Stage of the Disease
There are two principal components of the final medical diagnosis of lymphoma: the identification of the type of lymphoma and the determination of the stage to which the disease has progressed. These determinations are made though the diagnostic tests performed as part of "staging" and professional interpretation of the test results. This information is discussed in greater detail below.
The refined diagnosis that results from "staging" is one important aspect of making a decision about whether and how to treat your dog – whether to choose aggressive treatment (focused on controlling the disease), or palliative treatment (focused on controlling pain until death). Based on the diagnosis, the oncologist can tell you how advanced your dog’s lymphoma is and whether treatment is reasonably likely to control the disease. The oncologist will also tell you his or her expectations about the probable success of treatment – how likely it is that your dog’s disease can be brought under control --into "remission" -- and for what period of time.
Your dog and you are the other key factors in deciding how to act on a lymphoma diagnosis. Your dog’s age, overall health, and personality all play a role in your decision. Chemotherapy drugs themselves, and their side effects, may be more difficult for older dogs to tolerate, further compromising their limited remaining time. When Berry’s foster parents learned that their rescue Golden Amanda – estimated to be 12 -- was suffering from malignant mast cell tumors, they decided to make her remaining time as comfortable as possible. If your dog already has other significant health problems, these may complicate cancer treatment or already limit your dog’s overall life expectancy. Finally, an owner whose dog fears each trip to the vet may think longer about embarking on a treatment program involving repeated visits. But on this last point, skillful cancer caregivers can make your dog comfortable – even eager—to make visits. Berry and many other canine clients of VHUP’s Oncology Service love to go there because the staff is committed not just to treating the dogs, but to treating them well, softening the clinical experience with treats, toys, and lots of love. These factors, considered together, will help you decide whether the potential benefits of treatment will outweigh the risks and possible impacts on your dog. In the end, it is your determination – and yours alone -- whether your dog will have greater quality of life with treatment or without it.
Your own time and financial resources are the last factor. Chemotherapy requires commitment to make the visits, give the pills, and pay the bills. A responsible veterinarian or oncologist will be realistic with you about all of these things. As VHUP’s information sheet on "Cancer in Companion Animals" states, "treating pets with cancer is truly a team effort and the pet owner is on the team. It is important for you to present your pet for treatment precisely when requested to do so by your vet since the timing of cancer therapy is critical for obtaining an optimal outcome. In addition, medicines to be given to your pet at home should be administered by you exactly as requested by your oncologist." (See Appendix II for links to VHUP materials.)
For us, living six blocks from VHUP, the time commitment was not an issue. But at VHUP we met many dedicated owners who drove significant distances to VHUP to secure treatment for their dogs. You must remain faithful to the medication schedules, which for us meant interrupting at least one vacation to return home for Berry’s pills, forgotten on the kitchen counter. Finally, there is the cost, which is considerable. In Appendix III, we provide a summary of the costs associated with Berry’s first year of treatment. Berry’s treatment was expensive, but we would do it all again. Berry got so much joy from his extended life, and we got so much joy from watching him live it.
In the end, only you can find the path that is right for you and your pet. There is no answer that is right for everyone, just one that is right for you and your dog.
Type of Lymphoma
Lymphocites are cells that arise in the bone marrow. Mature lymphocites take part in cellular immune reactions. When these cells become cancerous, they may invade the organs of the lymphatic system (lymph nodes and spleen), and the bone marrow. There are different types of canine lymphoma, depending on which parts of the dog’s body are primarily involved:
Multicentric: Lymph nodes located in the dog’s neck, under the front legs, behind his rear legs, and in the interior of his body, become enlarged but not painful. Often, the spleen, which acts like a giant lymph node, is also enlarged, and the liver may also become involved, as may the bone marrow. Dogs may have only mild signs such as tiredness or decreased appetite, or they may suffer from weight loss, vomiting, diarrhea, excessive thirst or urination, weakness, or difficulty breathing. According to VHUP, "the severity of the signs depends on the extent of the tumor and on whether the cancer has caused changes in organ function." ["Lymphosacrcoma in Dogs", Clinical Oncology Services, VHUP, http://www.oncolink.com/types/article.cfm?c=22&s=69&ss=545&id=6020
Berry had multicentric lymphosarcoma which meant that cancer cells were present in multiple lymph nodes, his spleen, and bone marrow.
Gastrointestinal: involves tumors growing in the gastrointestinal tract. Growing tumors may cause obstructions. Vomiting, diarrhea, weight loss or decreased appetite are symptoms.
Cutaneous: affects the skin and appears as a series of raised lesions on the skin that may resemble other skin diseases. According to VHUP, this lymphoma can present itself as ulcerated lumps in the skin, and the footpads and gums can also be involved, as may the lymph nodes, spleen, and bone marrow.
Mediastinal: a rare form of lymphoma in dogs involving the thymus gland (the lymph tissue in the chest). Symptoms include difficulty breathing or excessive urination and thirst.
Bone marrow: this is leukemia. Symptoms include anemia, bleeding, and infections that result from decreased numbers of normal blood cells because of impairment of the bone marrow, where red and white blood cells and platelets are produced (see Tests, Chapter 6).
Excellent information is available at http://www.labbies.com/cancer2.htm and http://www.oncolink.com/types/article.cfm?c=22&s=69&ss=545&id=6020
The type of lymphoma is determined through "staging" -- ultrasound, radiographs, and examination of blood samples and aspirates or biopsies of the lymph nodes and other organs. These images and samples are examined to determine the location of tumors and the number and shape of the lymphocites that are present in the blood.
You need to listen carefully to the information about the type of lymphoma that has been diagnosed and which organs or systems have been affected. Berry’s lymphoma had invaded his spleen and bone marrow, but not his liver or other major organs.
Pathologists are veterinarians who assist the oncologists in determining the nature of the cancer cells. They do so through evaluation of the cancers and the cancer cells at the microscopic level.
"Histological grade". This term refers to the nature of the cancer cells. "High" grade cancers are aggressive and often spread before the cancer is diagnosed. Lower grade cancers are less active. The evaluation of how aggressive the cancer is likely to be is a very important part of the diagnosis. If the cancer is aggressive, it can be difficult to control. If it is lower grade, or "indolent", then your dog may have a better chance of long term survival as Berry did. The grade may be difficult for the pathologists to determine. In Berry’s case, VHUP could not determine at the outset whether his cancer would be aggressive or indolent.
The Stage of the Disease
The second component of the diagnosis is an evaluation of how far the lymphoma has progressed within the body. Staging is also when you confront the fact that your dog is ill. You hand him over looking "normal" and get back a dog with a Mohawk, his sides shaved for the ultra sound test that is performed to evaluate the spleen, liver and other internal organs.
A similar description of the stages at http://www.marvistavet.com/html/canine_lymphoma.html is as follows:
Stage I: only one lymph node involved
Stage II: several lymph nodes in the same general area involved
Stage III: all peripheral lymph nodes involved
Stage IV: all peripheral lymph nodes plus the spleen, liver, and/or anterior mediastinum in the chest involved
Stage V: bone marrow involvement, regardless of any other areas involved
An additional discussion of stages is at http://www.perseusfoundation.org/oc.html (page 93).
A dog in Stage I or II may have few symptoms, if any, symptoms that are observable to owners. In addition, during the earliest stages of lymphoma, even laboratory bloodwork (such as a CBC) may be within normal values and provide little help in disease identification. One academic source indicates that the majority of dogs diagnosed are classified as Stages III or IV. "Treatment of Lymphoma in Dogs: A Comparison of Three Chemotherapy Protocols" http://www.vetmed.lsu.edu/oncology/lymphoma1.htm
In advanced stages of the disease, the white blood cells may be elevated and cancerous lymphocites may be detected in the blood.
How Meaningful is the "Stage"?
Does the "Stage" matter and how much time and money should be spent trying to determine what stage your dog’s illness is? There is disagreement in the materials we have read. Some view chest radiographs as very important. However, other oncologists recommend limited staging in order to save funds for treatment. One article, "Staging Cancer – How Much? When? Why?" states with respect to lymphoma in dogs:
http://www.perseusfoundation.org/oc.html at 12.
An owner making a treatment decision might want to know the stage if the state correlated to the likely success of treatment. But is there a relationship between stage and likelihood of successful treatment? Several articles we read suggest that there is not – response to treatment isn’t as much dependent on Stage II or Stage IV but on other factors:
But our own experience with Berry contradicts the last statement: Berry was identified as Stage V by VHUP (and would have been classified as Stage V under all of the staging classifications we have seen), but he had an excellent response to chemotherapy and was a long term survivor.
Substage - "Symptomatic" or "Asymptomatic"?
One reason our dog did well may have been his "substage" – the fact he was "asymptomatic" and did not exhibit major disease symptoms. Whether your dog is "asymptomatic" ("A") or "symptomatic" ("B") may be more important than Stage III or IV or even V. This designation refers to how apparent the disease is and may be a reflection of whether major body systems have been negatively affected. Some sources indicate that dogs that are asymptomatic, as Berry was when diagnosed, may have a better chance of survival than a dog that are symptomatic.
Finally, in addition to the stage and substage, the actual type of lymphoma (cellular subtype and histological grade) are identified in some sources as important aspects of evaluating the prognosis for survival.
Don’t feel guilty if your dog is diagnosed as Stage IV or V. Stages I and II are medical distinctions of changes that are going on within your dog’s body that, as mentioned above, may not even be reflected in blood tests. Even the most vigilant owner might not detect problems at Stage I or II. And don’t let "Stage V" leave you in despair. Although Berry was classified as Stage V-A, he had the advantage of being young and otherwise in good health. Another VHUP oncology client, Alex, an Airedale classified as Stage V-B, survived 14 months after diagnosis, with impairment only in the last few days of his life http://www.dogdoggiedog.com/PetswithCancer.htm. His loving owner Diane had diligently alerted her local vet about a series of vague but disturbing symptoms, and repeatedly pressed for an explanation. A diagnosis of lymphoma was obtained only when she sought a second opinion.
As mentioned above, there is some debate whether useful information – beyond that obtained from the CBC and aspirates – is gained by performing in depth staging after the initial lymphoma diagnosis. Some experts believe that where an owner’s financial resources are limited, it is more important to use those funds for treatment than for the more costly components of staging which may not provide significant additional information about the extent of disease. Again, this is for you to consider, discuss with the treatment professionals, and decide. As discussed in Chapter 6, there were some tests recommended by VHUP that we declined.
· Ask whether they consider your dog to be asymptomatic or symptomatic.
Equiping Yourself for the Treatment Journey
If you decide to pursue aggressive treatment, you need to organize yourself and create a road map for your journey. Gathering information is critical, and knowing what kind of person you are will help you do that in the way that is most comfortable for you. If you are by nature a data gatherer, you find resources by surfing the web. You understand the need to be critical of what you read. (See our discussion of Internet resources in Appendix II.) If you are people oriented, you may want to seek out other owners who are further into the process, by canvassing the waiting room in addition to surfing the web. In either case, you need to assemble information with an open but skeptical mind, to evaluate information critically, and always to remember that your pet’s situation is unique.
We found other owners who had "been there" to be our best source of emotional support and practical advice about the "at home" aspects of treatment. Berry’s foster parents put us in touch with Bill and Linda, who had spent a year treating Murphy, another DVGRR rescue Golden. Although Murphy had had a cancer other than lymphoma, and was treated by a canine cancer specialist in a private practice, much of the course of drug therapy was the same. Bill and Linda knew the names of the drugs and could tell us how Murphy had reacted. It was from Bill and Linda that we first grasped that the course of treatment is unpredictable. More importantly, our emotional concerns were identical. We were asking the same questions that Bill and Linda had confronted a year earlier. Were we doing what was best for Berry? How could we evaluate what the doctors were telling us? If we started chemotherapy, how would we know when to stop?
Bill and Linda taught us that sometimes there is no "right" answer – only an answer that is best for you and your dog. Today we know we made a good decision: as a result of treatment, Berry had many, many months of normal life. And we did know when it was time to stop: Berry told us himself before VHUP’s tests did. But the path was not clear in early 2000 when we were faced with a depressed, weakened pet and an apparently terminal diagnosis. Until we were admitted to the Oncology Service, we were concerned that doctors at a research facility such as VHUP might be too aggressive in their desire to treat our dog. We didn’t know how much time to give the treatment program to work and we worried that we might be keeping Berry alive to satisfy our own needs, and not his best interest.
Locating Quality Care
Finding a knowledgeable and compassionate source of professional treatment is your first and most critical priority. The treatment options are discussed in greater detail in Chapter 4, and access to lists of specialists and other resources is discussed in Appendices I and II.
Advocating for Your Pet
Being an informed and persistent – vigilant -- advocate for your dog is the second critical component of helping your dog. You must start immediately and you must keep at it throughout your dog’s treatment. A consistent theme in other owners’ internet discussions of their dogs’ treatment is that owners who actively manage their dog’s cases are far more successful – measured in terms of their dog’s quality of life and length of survival – than those who do not. As we discussed in Chapter 1, you cannot be passive, and you cannot rely solely on the oncologists’ professional expertise to manage your dog’s care.
The importance of learning about lymphoma is discussed above. You must do to this to be an effective advocate for your pet. Your other tasks are to figure out how to get what you need from the treatment setting you have selected for your dog, and always, always to question until you understand and are satisfied with the answers you receive. As a member of the treatment team, you must learn to observe and inform the professional caregivers, and to follow the instructions they give you for home care. These activities are discussed in greater detail in Chapter 5, Working on the Treatment Team. Finally, you must be realistic, but also aim high.
Getting what your dog needs
An aspect of advocating for your dog is getting what you need from the treatment setting you are using. This point is discussed in more detail in Chapters 4 and 5. Whether your dog’s care is being managed by your veterinarian, a canine cancer specialist, or a hospital oncology department, you must quickly take stock of the professional resources in that setting and push to get the best ones available focused on your dog’s case.
You need to be assertive, persuasive, and persistent. You may need to tell your vet that he or she needs to consult with more specialized practitioners. You may need to request that the Oncology Department designate a primary person to work with you and your dog. If there is a professional with whom you are having difficulty -- who makes you feel rushed, stupid, or unimportant in the process -- you need to have that person removed from your dog’s case. Unless that person is brilliant and absolutely essential to your dog’s treatment, you have enough stress to manage already.
The longer your dog survives in treatment, the easier it is to get what your dog needs – the professional caregivers can do a better job because they know more about your dog, and they have become more emotionally vested in your dog’s struggle and success. But especially at the beginning of treatment and when you hit crisis points, you must be ready to act decisively, and push to be sure no stone is left unturned.
Aiming for the Summit
The last part of advocating for your pet is always trying to do better. In particular, remember that survival statistics are generalizations but your pet is unique. Diagnosis and treatment are as much an art as a science and involve many professional interpretations. Berry’s estimated survival time at diagnosis was 6-8 months with treatment, with a 5% chance of surviving for 18 months. In fact, his initial remission lasted 18 months, and in total, he lived with lymphoma for over 3 ˝ years. Until your pet tells you that you shouldn’t be optimistic (and he will if that time comes), always approach treatment with the hopeful expectation that you will do better than the average.
Imagining the End
Oddly enough, confronting the possibility of losing your dog and, soon after diagnosis, planning for that unimaginable event, may help you manage your stress and feel more prepared. With uncertainty all around you that you can’t control, this is something meaningful for which you can plan. If you have had an important dog before, especially one that did not achieve old age before dying, you may already know what you want to do. But if this is new territory, explore it. Because we had not previously had a dog in Philadelphia, we had no clue about putting the pieces together. We were wary of the institutional feel of VHUP and, after Berry’s overnight in the Emergency Service early in his treatment, we couldn’t bear the thought of Berry dying there. We didn’t know the local vet well, or whether he would come to our house, and we had only a tiny yard – no great spot to permanently honor our wonderful dog. Linda reached out and showed me the lovely rural farmyard where she and Bill had euthanized their dogs over the years. She knew the vet and could make arrangements on our behalf. It gave me tremendous peace to have a plan.
We did not use that plan in the end. Life had evolved. We had land in Vermont, and chose a gravesite under a spruce, near the stone wall that divides the woods and the meadow. But in the end, that spot became a memorial instead of a grave, and Berry’s cremains sit in a cedar box (with his angel’s halo and devil’s horns firmly affixed) in the niche above the dog food bowls in our kitchen in Philadelphia. And the most dramatic change of all: in the end, we took Berry to VHUP to be euthanized in the Oncology Service – his second home where he had spent countless hours over the years – surrounded by us and his friends there who took care of him so well, for so long. He loved them, and they loved him.
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