Tuesday, September 18, 2007

This is the story of Oliver's journey

It all began with a new lump.

For Oliver, our seven year-old Weimaraner, lumps and bumps were far from unusual. Fatty tumors are common in this breed (and many others) and are very easily observed since the Weimaraner coat is extremely short.

We regularly pointed out his lumps to his veterinarian during annual physicals. Our local veterinarian (we’ll call her Dr. G) has always carefully monitored these areas and performed needle aspirations when one appears suspicious. Thankfully, all had been simple lipomas (benign fatty tumors) and were no cause for alarm. However, the new lump on Oliver’s right flank near his hip seemed to arise more quickly than others. Just to be safe, we made an appointment to have it checked. Dr. G. did a series of needle aspirations on five lumps and only the “new” lump produced a bloody mixture rather than the fatty material that usually comes from lipomas. So, we made an appointment for two days later to have the lump removed and sent to a pathologist.

Oliver suffers from severe separation anxiety so, over the years, Dr. G. has allowed us to pick him up immediately after he becomes conscious after anesthesia. We picked up the groggy, anxiety ridden fellow and headed home with the hope that this was a false alarm. However, unfortunately it was not.

Two days later, Dr. G. called and said “I’ve been putting off calling you because I don’t know how to tell you this, except to tell you directly. Oliver has a Malignant Peripheral Nerve Sheath Tumor” (MPNST). I nearly collapsed with shock, this dog is only seven and I’m not prepared to lose him. Dr. G said that she would call the local veterinary referral service surgeon the next day and get back to us. She explained that surgical removal of the tumor plus “clean margins” (an area of healthy tissue surrounding the malignancy and assuring that the cancer has not spread into the surrounding tissue) is the best chance for a “cure”.
The pathology report indicated that the original surgery had not produced clean margins. It was a long, tear filled night for our family. Shock, dread, confusion and despair were all rampant.

I decided that I needed to learn as much as I could about MPNST for two reasons. The first was to be the best possible advocate for my beloved dog, but selfishly, the second was so that I could prepare myself for what might happen. I started with the internet, and became quickly aware that very little information is available on MPNST; there were a few cases documented about human occurrences and a couple scholarly studies in advanced canine occurrences. None of this seemed to apply directly to Oliver’s case. He was an otherwise healthy dog with no symptoms. The canine cases that I found all pertained to animals with more advanced tumors who initially presented with lameness or other symptoms. I was getting scared.

One of the most valuable things I did next was to Google “pets with cancer” which linked me to the Pets With Cancer Lifeline (PWCL) website and provided me with an email address so that I could reach out. I was trying to find other people with pets diagnosed with MPNST. As it turned out, I received several supportive emails; however none were from people with MPNST experience. BUT, those supportive emails made a huge difference. Suddenly, I wasn’t alone. There were other people out there who were feeling, or have felt, all the same emotions. I even received a phone call from one person, just offering support and understanding. I can’t overstate the value of a supportive network when one is waging an unexpected battle. The kindness and goodness of utter strangers became the “wind beneath my wings” as I now had a “team”. I was researching and fighting for my Oliver, but also for other people who might receive the MPNST diagnosis.

There are several descriptions available for MPNST. These can be pretty formal, so I will simply try to state my laypersons understanding here. This is just the product of my analysis of information obtained during my research and shouldn’t be considered to be a medical opinion. MPNST is a soft tissue sarcoma, one type in a family of similar tumors that appear in the skin and fatty tissues of animals. What makes MPNST a differentiated condition is that it produces a cellular level tumor that occurs in the outer sheathing of nerves. These tumors are usually relatively slow growing and found most often in middle aged dogs on the extremities or lateral body surfaces. Metastasis is rare, but local recurrence is common when “clean margins” are not achieved surgically. Depending on the tumor’s location and other obvious considerations, amputation of the effected limb is sometimes curative, though not a reasonable approach for Oliver. Chemotherapy is ineffective in treating these tumors; however radiation therapy (alone or in combination with surgery) is often successful in stopping tumor growth. What I wanted to know was what no one could tell me. I wanted to know what would happen if we did nothing and allowed this tumor to recur locally. None of the vets with whom I spoke would offer a prognosis, but all seemed to agree that "it wouldn't be good". When I inquired about the possibility of accepting that Oliver would eventually succumb to this cancer, but that we might have a number of wonderful years in the interim, no one would comment. All the body language and subtleties said "you have to treat this cancer or bad things will happen". My research produced only a few examples of untreated animals and the facts indicated that the animals suffered fairly significant recurrences with the tumors eventually engulfing the nerve sheaths and causing profound lameness and pain. The untreated dogs were eventually euthanized. So, we ruled out the "do nothing" plan.

With this collage of knowledge, I set off to try to talk to specialists. Dr. G. called and said that the surgeon she consulted felt that surgery was not an option (surprisingly, even without examining Oliver) and that he believed we should pursue radiation therapy. Dr. G recommended that we take Oliver immediately to Gaithersburg, MD, about 2 hours from our home to consult with Dr. Eric Boshoven, a radiation oncologist. Having had experience with humans suffering from life threatening conditions, it seemed to me that we should seek a consultation with an oncologist before going straight to radiation therapy, in an effort to have someone with cancer expertise coordinate Oliver’s total treatment, not just radiation. I wanted someone to examine the dog and give us treatment options specific to Oliver’s case, not just based on a one-page pathology report.

I began compiling recommendations from people in the “dog world” including my aunt who prevailed upon her friends in the Newfoundland community, and from PWCL about treatment centers in driving distance from our home. It came down to three locations: the University of Pennsylvania in Philadelphia (about 2 hours from home), the office of Dr. Anne Jeglum in West Chester, PA (about 1.5 hours, although their radiation therapy office is in Chalfont, PA about 3 hours away) and Dr. Boshoven’s practice in Gaithersburg. I called and requested appointments at Dr. Jeglum’s and at Penn. The first appointment available was at Dr. Jeglum’s in a few days. Since Dr. Jeglum was on vacation, we saw another doctor in her practice.

By the way, going to a veterinary oncologist’s office is a tough experience; there are lots of sick animals and sad people. This was tough to get through. The doctor who examined Oliver explained that he would need to undergo radiation therapy to treat his tumor. Here is a description of what that entails:

Radiation therapy for MPNST is a 19 treatment protocol with treatments being administered daily (Monday through Friday) for 4 weeks. Each treatment must be administered under anesthesia and with intubation. The dog will develop burn-like sores after about the first week and may need steroids and pain medications. Bone tumors in irradiated areas sometimes occur later.

The treatment would cost about $4,000. Since Dr. Jeglum’s radiation therapy facility is in Chalfont, PA, the doctor suggested boarding Oliver for the month and allowing him to be treated daily. We tried to explain his separation anxiety, but I think that she may have thought we were overstating the condition. Regardless, we know our dog better than anyone and we were absolutely certain that he would not survive this treatment plan. I would need to take a leave of absence from work, get a hotel room and devote the month to taking Oliver back and forth from treatments.

While I was preparing myself for the likelihood that radiation would be required, I decided to research whether there are other protocols that involve fewer or less frequent treatments. I called Penn, but found that the radiation oncologist will not speak with non-clients (I learned that this is the standard response from specialists). Since it was not yet our appointment date, I couldn’t determine what the regiment would be at Penn. Finally, I spoke with Dr. Craig Clifford at Red Bank Veterinary in New Jersey (once Berry the Dog’s doctor - thanks for the “in” Carol! - Berry to the right) who explained that the “state of the art” protocol (and one that I should anticipate any radiologist recommending) would be the 19 daily treatments. This information was pivotal since it had now become abundantly clear that logistics would play a big role in our ability to successfully facilitate radiation treatments on a daily basis. Therefore, I called and made a consultative appointment with Dr. Boshoven’s at the Gaithersburg VCA Veterinary Referral Associates. Going to Penn would be more difficult and it seemed that the protocol would be the same. I felt time was of the essence and it was necessary to move forward. Interestingly, during my conversation with Dr. Clifford, he expressed his confidence that we would “be in good hands” with Dr. Boshoven, but that we also not give up on a surgical removal of the tumor in an attempt to get clean margins before going straight to radiation, given the location of Oliver’s tumor and its early stage. I was so happy to have a doctor not dismiss the possibility of a surgical treatment. If we could get clean margins, Oliver would not need to endure the radiation and we could be more certain that the cancer was eradicated.

Our visit to Dr. Boshoven went well. He was very kind and spent over an hour just talking with us. Oliver, who is not generous with kisses, even bestowed one on the doctor! At first, Dr. Boshoven thought that surgery would not be an option since the tumor site is at a point on the front of the flank near Oliver’s abdomen side. We talked all about what radiation was going to be like and Dr. Boshoven was very, very reassuring. We asked all kinds of questions including the repeated anesthesia risk. Overall, the prognosis was good with a likely cure. The cost would be around $5,500. After he completed Oliver’s physical exam, Dr. Boshoven said that he wanted to retract his initial comments regarding surgery. He said that he wanted to take Oliver to see Dr. David Saylor, a surgeon (who incidentally is a soft tissue sarcoma surgical expert) and VCA Medical Director. After the consultation, we got the welcome news that Dr. Saylor thought he could go get any remaining tumor and get clean margins. The surgery was set for three days later. Dr. Boshoven said that he believed there was about an 85% likelihood that the pathology would come back with adequate margins and or no remaining cells. If not, unfortunately radiation would be our last chance at a cure.

The day of surgery was very stressful. I was so nervous after they took Oliver back that I even asked the receptionist to call back to the surgeon and make sure that he knew that I had not approved an amputation. I think they all thought I was totally nuts. Maybe I am. The surgery took about 1 ½ hours. Afterward, we spoke with Dr. Saylor who said that the surgery went well and he saw nothing suspicious inside Oliver's leg, but that this cancer is at the cellular level, so it's just hard to say. He did say that the difficulty they had settling Oliver resulted in them having to use very high levels of sedation. The assisting surgeon said that they used enough for a horse. So, we went off to try to have some lunch since they said he would be released no earlier than 2 pm. As I waited in line at the deli at 11:45, my phone rang. It was the assisting surgeon saying that we needed to come get Oliver, that he was inconsolable. So, we sped to the vet. They brought him out and he was totally out of it.

The incision was twelve inches long, and they removed two inches of tissue in width, so there were multiple layers of stitches internally and staples externally. We left with codeine for pain and Deracoxib for inflammation. The ride home was horrific. Oliver cried, panted, lost control of his bowels, and yelped in pain. His tongue was so dry and numb that it wouldn't retract into his mouth. Once we were home, he continued panting and crying, wouldn't lie down, and only wanted to stagger around. We made a bed on the floor and tried to hold him there. I thought my heart would actually break; it was so bad that I trembled. Finally, at 6 pm, I called back to the vet. He said that Oliver's personality makes him very stressed under sedation; he just doesn't like to feel that something is off. As for the pain, he said that we could increase the codeine to four tablets every four hours, but that the risk was that the analgesia would stress Oliver in the same way the sedation did. It was a long, difficult night for all of us.

Then the wait began. While Oliver was suffering that first night, we said that this was the last thing we would put him through. It was enough. I was so afraid that if radiation was required, he wouldn’t be able to tolerate the daily anesthesia. Even with radiation, the radiologist told us, they can't “see” this cancer, so they just guess on the size and depth of the radiation target and hope they get it all. If the bad cells were further advanced than the huge tissue mass that they removed, it would be a pretty big cancer. So, we tried to keep an open mind and wait until we had the facts and could make any final decisions. This is a very special, but very different, dog.

Six long days later, we were awakened by a call from Dr. Saylor’s assisting surgeon. It was the good news for which we had prayed. The wide excision and aggressive removal of tissue seemed to contain all the "bad stuff" plus a clean one centimeter margin. In fact, the pathology report said that they detected no malignant nerve sheath tumor cells in the sample; however, since there was a fairly large area of inflammation, the tumor cells could have been hidden by the huge number of cells present. Regardless, the clean margin was enough that the doctor recommended forgoing radiation treatments, especially given Oliver’s reaction to the surgery and anesthesia. It will be important for Oliver to be examined for recurrences every three months for two years. The final report said that if recurrences were not present over the two years, the cancer could be considered cured.

As I write this, it has been a little more than four weeks since Oliver’s diagnosis, and nearly three weeks since his last surgery. The recovery from surgery has been a bit more difficult than I originally anticipated. The staples closing the incision are under constant stress and pull on the skin remaining on either side. This is due to the large size of the incision and “gap” that needed to be closed after removing enough tissue to achieve clean margins”. As do most dogs, Oliver really wants to lick his wound. This is very detrimental to healing so Oliver is usually attired in some combination of boy’s basketball shorts and/or an inner tube type device that is an alternative to the typical Elizabethan collar. He finds ways to work around both, but the end is now in sight, with the final staples set to be removed this week. While we are hopeful that the end of this chapter will be a happy one, we will be diligent in checking new lumps and watching the original site for the rest of Oliver’s life. We have been very blessed to have found the original lump so early and to have enjoyed such great medical care subsequently.

Having a pet with cancer is a big challenge. It takes a great deal of dedication and stamina. Consideration of the pet’s best interest is obviously paramount, and this requires a robust combination of research, networking and persistence - all tempered with the very private understanding of one’s individual pet. I am very thankful that we were so well supported by the members of PWCL and our “family” of friends. I don’t think we could have navigated these turbulent waters otherwise.


Please direct comments and questions to: oliversblog@hotmail.com


Update - I just checked this page after so many years, and am so sorry for the missed messages.  I wrongly assumed I would get emails when new posts were posted.  I feel for each and every person who posted and am sorry to have not been more supportive. 


Oliver passed away on April 14, 2013, at the age of nearly 13 and 6 years after his MPNST surgery.  We had to say good-bye to him after he awoke with profound paralysis.  This was a Sunday morning after he had climbed the stairs the previous night and slept soundly on my pillow.  I don't think the nerve sheath tumor caused the paralysis, especially after so many years.  He had a good relatively long life (for a large Weimaraner) and I consider my time with him to have been a divine gift.  He will live inside my heart as long as it beats.  

14 comments:

Laurie said...

Shelley- I have to tell you that I was so inspired to read your story about Oliver. My 2-year old Golden Retriever, Chase, was recently diagnosed with MPSNT - in fact, his second surgery is scheduled for Tuesday, March 11. I have been doing tons of research on this and am so glad I came across your story. Keep your fingers crossed for us...and thanks so much for your posting.

Laurie

Neecie said...

Hi Shelley, Thank you for posting Oliver's story. My daugher's beloved West Highland terrier, "Gracie" was diagnosed with MPSNT and had surgery this week to remove a tumor that was pressing on her spinal cord. She is presently at the University of Georgia Vet. School Clinic. The decision for radiation treatment has not been yet decided. Many tears have been shed this week.

Your Oliver is so beautiful. I hope he had a good outcome from his surgery and is doing well.

Regards,
Denice

DogMa said...

Shelly, one of my dogs has been diagnosed with the same thing. In the past I have learned a lot about natural and alternative therapies and wanted to share one with you - and your readers. These two things are miracles for surgery. Homeopathy will help any dog get through surgery faster and will help the dog heal faster as well. Both these remedies can be purchased at health food stores or on line. 1. ARNICA: this stops the anesthesia from settling in tissues so the dog will not wake up confused, lost, nauseous and groggy. It helps prevent bruising internally which = faster healing and less pain. 2. STAPHYSAGRIA: this is specific for surgical wound healing. I strat the Arnica the day before surgery. Staphysagria right afterwards (or a dose before surgery can be good too). ABOUT HOMEOPATHY: It is a medicine in other countries, over the counter here. Standard practice is to take 3 separate doses/day - 10-15 mins before/after eating/drinking. It is sublingual so you want it to get it in the bloodstream via the mouth with no other elements in the mouth to disturb it's progress. I prefer to dissolve the tablets in a tiny bit of water and syringe it in - near cheeks or under tongue. The tablets will dissolve very quickly if you can get them in and not let the swallow for a minute. The pellets are slower to dissolve and better to use with syringe method.

LASTLY, re: MPSNT - there are homeopathic remedies for this which I am looking for now. As there is a genetic element to this aliment, homeopathy will be powerful here. It works on a deep cellular level that no medicine or herb can.

FOR EVERYONE dealing with cancer - there are many natural remedies that can help. Note that MODIFIED CITRUS PECTIN will inhibit a tumor from spreading. Sometimes even help shrink it.

Two things for anxiety that I found are helpful:
1. Rescue Remedy 2. Herbal Calmer (Bea Lydecker's Naturals). Bea has a whole nutritional program for cancer - worth looking into. All disease is affected by a weak immune system - rebuilding it is important.

FOOD: Nutrition is critical. NO WHEAT CORN OR SOY! All allergens that dog's were never meant to eat. Give a HUMAN GRADE FOOD with NO GRAINS (dogs bodies are not designed to digest grains). Best is to feed real food - the internet has a lot of information on that. I use the BARF diet primarily. Important to add in the organ meat and veggies although they are in small amounts. My dog with MPSNT is 11 and all the vets that have looked at her blood work do so with open mouths - they have all said, independently: "this is the blood work of a 2 year old dog!".

Will report back when I find out what the homeopathic treatment is for this disorder.

Aloha! Laureli and Oreo

DAVID HAAS said...

Hello,
I have a question about your blog. Please email me!
Thanks,
David

Kidhiker said...

So it appears it has been many years since your post. How is Oliver now? We had a lump removed today from our Baken and the vet thinks it is some form of nerve sheath tumor but not sure what yet. Waiting for the biopsy results. That is the pits!

Artemesia said...

Shelly thank you for writing about Oliver's experience with MPNST. Your boy sounds alot like my Louie who had his cancer surgery in 2011. He is 9 now. I hope you'll update this as we're all curious to know how Oliver is doing. -Lisa

Artemesia said...

Thinking about your Baken and wondering what the biopsy showed.

cxp said...

I see this post is old. Just wondering how Oliver is doing. My 6 year old weimaraner has the same diagnosis.
Thanks and prayers to you
Chris

Catherine Wallace said...

I tried to send an email, but the address is no longer valid. Does anyone know where I can send email to Shelley?

catherinewallace001@gmail.com

Wayne said...

Hi Shelley, thank you for posting this. Even though your original post is from 2007, you and your Oliver have given me strength. My 7 year old golden retriever Boris was recently diagnosed with MPSNT. We found a lump at the end of April during regular grooming. After consulting with an oncologist, she felt the lump on Boris' hip/rear end could be removed with surgery and then biopsied to determine what it actually was. Well, the results were awful - Grade 3 MPSNT. To make matters worse, to achieve clean/wide margins, the surgeon had to remove so much tissue and muscle, that a skin flap was necessary to seal the wound. After 10 days of Hyperbaric Oxygen Therapy trying to keep the skin flap alive, we still lost 25% of it. A follow-up surgery was necessary to remove the dead portion of the flap and the underlying dead tissue. The resulting stitched area was so tightly bound that after 3 days, Boris split back open. I just dropped him off for his 3rd surgery in 2 weeks - now just trying to close the wound resulting from the removal of the original tumor. And the surgeon and oncologist are recommending chemotherapy since the tumor was a grade 3 tumor, despite getting clean/wide margins from surgery. I'm at such a loss and feel like I have put poor Boris through so much already. I was promised a simple tumor removal - no mention of a skin flap until 30 minutes before surgery in a telephone call after Boris was under anesthesia and on the table. And now he has a hole in the side of his hip the size of a lemon that they cannot close. And no one will talk to be about prognosis. Sorry to dump all of this, but I just wanted to thank you for your blog, as it really, really helps to know that there are others that have gone through this.

And I really hope that your beautiful Oliver had a good outcome and that your family had (and may still have) good times together.

Wayne and Boris

Len M said...

I felt some comfort reading your story of Oliver. we lost our Weimaraner this past July 4th, 2014.
Dashiel was almost 11 years old. He got bloat, his stomach turned, and he went into emergency surgery. While in surgery, he had cardiac arrest. They did resuscitate him, but his kidneys and other Vidal functions did not come back. 30 hours later we had to put him down.
He also had multi sizes cyst’s all over his chest and legs. While in surgery the Doctor saw a large mass that alarmed her. but we did not have time to take a sample for the lab.
The pictures you posted, looks exactly like Dash. My heart goes out to you. I know what you have gone through, as we are still looking for him everyday. and I dream of him most nights.

Perrie Jinnie said...

This is so nice. You are simply doing great by letting others know about this guy. I had been researching in the health issues of pets for too long so now I found something new to know and let others know. You had made him both physically and emotionally well.
Regards:
Pet Grooming Tips

Unknown said...

I am so sad reading this as my family dog also a Weimerana has also be diagnosed with cancer. I'm so devastated :,(

Nina said...

Greetings from Finland. My dog is currently recovering from the tumor removal surgery (front of the elbow). Three huge incisions in his tiny leg (unfortunately, incisions got infected). I am so worried since he also has liver insufficiecy problems, e.g. Cannot have any NSAIDs, even antibiotics can worsen the basic disease (he got liver tox from carpofen 2 years ago). Nevertheless, we are trying to find the fighter spirit by reading your story, that evil tumor can be beaten, even it is a struggle!