CancerGuide: Inspirational Patient Stories
I was diagnosed with stage IV Renal Cell Carcinoma on June 27, 1999. At the time I was too stunned to be amazed, but the insidiousness of this disease is amazing to me now. It crept into my otherwise healthy body, leaving a 10cm tumor on my right kidney, a 2.5cm tumor on the right Adrenal, a 5cm and a 2cm tumor in my left femur, and "numerous" lung tumors, the largest of which was 3cm. Only weeks before I had been playing basketball in a senior's league, scrapping for rebounds with a left leg that was almost ready to snap. And I did not notice any decrease in lung capacity despite a chest full of tumors. In short, I was very active and unaware that I was about to get a death sentence.
Much has happened in the last three years. I am still alive, contrary to the predictions of a prominent Urologist. I am tumor-free at the moment, but my lifestyle and general mobility has changed immensely. My main reason for writing this piece is to provide hope for someone newly diagnosed, as I derived hope from reading Steve Dunn's web page back in July 1999, when the specialists were getting me ready to die in 6 to 12 months. And also I would like to put forward the things that I would do differently if I were to be able to do it over again.
My first warning that something was wrong was about mid-June 1999 when I had a pain just above my left knee. It was a persistent pain and very different from any normal knee injuries that I had had in the past. My GP arranged for an X- ray. I was not satisfied with the first X-ray and ordered another, and this second radiologist report confirmed that it was indeed a tumor. A further chest X-ray revealed a 3cm tumor in the right lung. Here's where I started to learn the meaning of the word Metastasis. Now that we knew it was a cancer of some kind, it remained to determine where the primary tumor was. My GP was sure that I was too old to present with Bone Cancer and he thought that Lung Cancer was unlikely for me as well. The type of cancer was confirmed the following week when a CT scan revealed the large mass on my right Kidney and so it seemed likely that I had Renal Cell Carcinoma. The confirming biopsy was done later when the leg was "nailed" (a metal rod inserted to give the femur strength).
Dr. Lee recommended me to the British Columbia Cancer Agency (BCCA). This organization has many talented and devoted cancer professionals as well as volunteers and researchers. I first met a Radiation Oncologist whose advice was to stabilize the left femur with a "Nail", then to have some radiation treatment to reduce the pain. He found an orthopedic surgeon at Lions Gate Hospital who could do the operation quickly and it was done. This had an immediate effect. First the pain at the tumor site disappeared, but unfortunately it was replaced by pain at both screw sites because the surgeon used screws that were too long and they were abrading the flesh next to the bone. I opted to live with the new screw pain for a while.
About this time, my friend Brian had found several web sites for me to explore. One of them was Steve Dunn's web page . When I read Steve's story and others that I could relate to, it had an immediate effect on me as far as hope was concerned. If they could do it, I could do it too.
I had three radiation treatments to the left femur. These treatments were to complicate the future orthopedic legwork. In retrospect I would not do this again, as it had no effect on the tumor size.
I found out at this point that BCCA, despite its size and resources, is restricted by protocol on how it is allowed to treat Kidney Cancer. Basically they were suggesting palliation. I wanted to fight, so the radiation Oncologist recommended me to Dr Klimo, a medical Oncologist on the north shore who was not restricted by any protocol. Klimo told me frankly that there was no treatment for Renal Cell Carcinoma available in Canada. Interleukin-2 is not an approved drug in Canada, and he referred me to Dr. John Thompson in Seattle, who was involved with a number of Clinical Trials at the University of Washington.
Many things were happening simultaneously at this time. I had met Dr Thompson at UW, and I had to consider the different treatments and the different clinical trials available, that conventional medicine had to offer. It was becoming clear that immuno-therapy was the only approach worth taking, but I was curious as to why my immune system would stop working in an otherwise healthy body, and if it could be made to re-start with a simple change of diet or addition of supplements. After trying a well-known Naturopathic Doctor, I heard of a group of Doctors and Health Practitioners that were well acquainted with the Alternative Therapies as well as traditional ones. So I decided to visit the Centre for Integrated Healing in Vancouver. The Centre for Integrated Healing(CIH) is a non-profit society, which provides integrated complementary cancer care for people with cancer and their families. There I had an interview with Dr. Hal Gunn. I explained to him that I was thinking of going into a clinical trial in the US, one that would either involve Interleukin-2 or Interferon. But I was very interested in attacking this problem in a broader way than just simply the clinical trial. He encouraged me to make a number of lifestyle changes related to stress and diet, and he gave me a list of Vitamins and dietary supplements to include with my daily food consumption as well as some complimentary medical therapies such as their MRV Vaccine. All of these new habits and dietary change were considered to be complementary to the Clinical study, which I was about to embark upon.
In September 1999, I was accepted into the Clinical study at U of W Seattle which involved a phase 2 study funded by Roche (a European Drug Company), of a drug called Pegylated Interferon alpha-2a. The study involved a once-weekly subcutaneous injection of the drug which would ultimately last (for non- progressors) for 16 months. I had been warned that there would be flu-like symptoms accompanying this, but I had no such discomfort, even at the very beginning. So from September 8, 1999 to March 15, 2001, I self-administered a once weekly injection of PEG-IFN and during this period the kidney tumor shrank and became "largely necrotic", the lung and chest tumors disappeared and the leg tumor appeared unchanged in size. When it was clear that a response was underway, the doctors changed their opinion of the usefulness of a Nephrectomy. For the sake of "good house-keeping" the kidney and tumor remains should come out. And in November 2001, the diseased Kidney came out, with no trouble at all. From this description it may seem that I had a successful and problem-free treatment . From the standpoint of the cancer treatment, this was true. But the complications arising from the leg metastasis still bother me today.
The leg metastasis first had a sloppy nail job, which was later cleaned up in another operation but ultimately failed when the nail snapped at one of the screw holes. This dictated a knee replacement operation, which failed because of a Staph infection picked up in the hospital. Another knee replacement operation followed, which failed because the knee now would not bend from the surplus of scar tissue. Ultimately this led to an amputation above the knee, but not until eight leg operations in total had been performed. During this knee surgery marathon, there was a pathological test done on the tumor, which revealed that the there was no remaining malignancy, and indeed there was evidence that there was bone rebuilding going on at the time of the surgical removal. The lesson to be learned from this is that I should have had the Femur pin operation done by a surgeon who was not of the opinion that I would be dead in 6 months (I needed a good job done in other words). Then I should have behaved more like an invalid during this period and taken care not to fall off my bicycle and other activities which would give the leg time to heal.
In spite of the fact that I am still having trouble with the amputation, I am very grateful for the disappearance of the RCC tumors with virtually no side effects. It's very difficult to attribute the success to any one item. Technically I was on the Roche study for 16 months. But in fact, during that time there were many weeks when I was unable to take my weekly shot of PEG IFN because I was in the hospital having my left leg altered and thus unable to take anything but antibiotics and morphine.
And ever since my visit to the CIH, I had deliberately altered my lifestyle with the emphasis on low stress and good diet, and I continue the style to this day. During all of this time, I was very fortunate to have had the total commitment of my loyal life partner Cathy and the support of all my family and many friends; an irreplaceable component of a fight against this awful disease.
At the moment I am tumor free and keeping a close eye on my body to catch it early if it does come back. I have a CT scan coming up in 4 months. I plan to fight again if it does return. In the meantime, my hope is that I can keep it at bay until someone discovers that genetic silver bullet.
As a Canadian, I am of course disappointed that it is necessary to go to the US for treatment. The Canadian Federal Government is being disingenuous in their loud and frequent pleadings that Canadian Medicare is pure excellence. Medicare is excellent if you get a cold, or break a toe. But if you have a serious medical problem such as Kidney Cancer, it is nice to be able to access the American system. I am sure that the reason that IL-2 is not approved in Canada is not because the drug itself is so expensive, but mainly because the Liberal Government does not want to pay for the associated ICU time. Of course they will hide behind the excuse that Medicare is administered by the Provinces, but most of the money and all of the drug approvals come from the politically astute in Ottawa. Kidney Cancer is not a highly visible disease.
For me, and many other Canadians with serious disease, access to the American Clinical Studies is very important. They are usually funded by the drug companys. For those who can afford to pay for treatments in US centers, this is important too. I am beginning to be concerned that the rise in American Xenophobia since Sept 11 may affect this vital access. Meanwhile, I will be presenting the case to my MLA that the Province should fund the cases where no treatment is available in Canada.
Hope and the Will to Live are the foundation of the Healing Pyramid. Perhaps someone newly diagnosed with RCC will read this someday and derive the same hope that I did when I read Steve Dunn's story.
Update: June 12, 2003
I have just been given another "No Evidence of Disease" verdict by my oncologist. This comes almost 4 years from the date of my original RCC diagnosis, June 17, 1999. Needless to say, I was thrilled to hear the news; so thrilled that I was speechless; speechless to the extent that I forgot several of the questions that I had planned to ask during the meeting. I must try to control my anxiety before these meetings (next one just before Christmas).
I would like to correct one thing that I included with my original story; that is, Interleukin-2 has been approved for use in Canada. This was not the case back in 1999 when I was researching. But as far as I can determine at this time, there is only one location in Canada that will administer the Bolus IL-2 treatment and that is the Jewish General hospital in Montreal. This will progress as time moves on and more medical oncologists become familiar with the protocol.
I have had many people ask me where they can get pegylated interferon, which is the drug that I had on a phase 2 trial starting back in September, 1999. To date, this drug is not approved for RCC but it is approved for Hepatitis-C, and I believe that we can reasonably hope that in time it will be approved for RCC as well [Editor's Note: In the US if a drug is approved, a doctor can write a prescription for any use, regardless of what it was approved for, and so it might be possible to persuade a doctor to prescribe this drug. I don't know if this is also true in Canada].
I am encouraged by the many new clinical trials that are available now, and would encourage anyone who has been recently diagnosed with the demon RCC to have hope. Hope is an absolutely essential part of any Cancer battle.
Update: January 14, 2004
Something changed in October 2003, and what I noticed first was a kind of morning sickness, which would gradually diminish as I got food into my system and I got active during the day. Later on into November I started to have periods of dizziness, then full scale nausea, which often ended in vomiting. I followed up on all of the usual culprits first, such as gastritis, possible ulcers, etc, with my doctor, and finally I requested a brain scan, which I had on December 10, 2003. The brain scan indeed showed a single 4cm tumor on the cerebellum; my worst fear come true, a met hiding behind the blood/brain barrier that is invulnerable to the treatment that dispensed with all of the other tumors I had in 1999.
I was very lucky to get it operated on within one week, and I was home for Christmas with nothing more than a sore neck and headache.Today, three weeks after the operation, I am pretty much back to normal, with the exception that my eyesight is not quite what it used to be, but it is not a serious problem to me, and the Doc says that it is the muscle control of the eyes that is affected, not the actual optics part within the eye.
How did all of this happen? That's a good question. I do not have any tumors in my body, this confirmed as recently as one month ago by a CT scan of the entire abdomen, and this has not changed for nearly 3 years. And I did have a brain scan 18 months ago which showed clear. So I guess one must assume that the seed for this tumor (which turned out to be 2.5cm RCC) must have separated from one of the many tumors I had in 1999, lodged in the brain, and remained dormant until recently. Then decided to go into action within the last 18 months.
Oncologists that I have talked to seem reluctant to order up brain scans (the two scans that I have had, I had to insist upon). According to them, brain mets from RCC are not very common. But they may just be un-documented, because most metastatic RCC patients are not long-term survivors. I was at the 4 1/2 year post diagnosis point when I found the brain tumor. My suggestion to anyone who is a survivor that in addition to the regular body scans, that you have a brain scan every 12 months.
Update: November 2004
It is now 12 months since I was diagnosed with the brain tumor in my Cerebellum, and nearly a year since the successful surgery. I have just had an MRI brain scan done, which showed no evidence of disease return. Needless to say, I am especially thankful for this clear test, because there was an issue over Whole Brain Radiation(WBR), that I took a stand on, with the Radiation Oncologist, which was supposed to have left me vulnerable.
To put the confrontation in short-form, the Radiation Oncologist thought that it was advisable for me to have WBR to mop up any miscellaneous RCC seeds that were too small to see with a scan. My opinion was that radiation kills good cells as well as malignant cells, and I didn't want to be alive if I couldn't think. The Onc said that the choice was up to me, and I agreed that I would take responsibility for the decision. I refused the WBR and to this point anyway, I have been lucky.
My vision, balance, and brain function are now totally back to normal, and the only residue from the brain surgery is that my scalp behind the left ear is numb, where they cut into the skull.
Update: March 2010
(from Robert's daughters)
Robert Norcross passed away on Jan 8th 2010. Kidney cancer finally got the best of him but only, I imagine, because a tumor in his hip went undiagnosed (despite frequent scans) until it was 14cm. Following his last post in 2004, he had so many more “close calls” and “miraculous recoveries” for example a second brain tumor (that resulted in a massive aneurism) removed during a 12-hour operation, after which he recovered nearly completely again, with only slight decrease in coordination of his left arm and hand. 25 operations in total over the 10 years from his diagnosis. After attempting 2 more drugs with no success at the cancer clinic at Lions Gate Hospital for the hip tumor, and being in unbearable pain, he finally gave up hope, and succumbed to the disease a few weeks thereafter.
Our dad was an inspiration like no other, and truly embodied the power of positive thinking. This incredible guy could still score an 84 in golf with only one leg (no prosthetic!) and would grin cheekily and say “yeah, just imagine what I could do if I had NO legs!!” My sister and I are so grateful that the extra 10 years he lived beyond his original death sentence allowed him to see both of us married, and the birth of his four grandchildren. There is a deep ache that persists for us now, we miss him like crazy. We hope that many others continue to take inspiration from his story and remember what he always reminded everyone “hope is an absolutely essential part of any cancer battle”.
This CancerGuide Page By Robert Norcross. © Robert Norcross
Page Created: July 12, 2002, Last Updated: April, 2004