Cancer Guide And Motivational Story And Also Treatments

My story started in 1981 when I had a hysterectomy to remove a fibroid the size of a 5 month pregnancy (12cm) with heavy bleeding. The doctor and I were both surprised it was cancer. He told me I was cured, that he sent a slide up to Boston General and he got it all. I was cured. Sure......I went on my merry way never getting chest x rays, never getting checked out at all except for pap smears every year. 11 yrs. later, I had to have breast surgery and had to have pre op tests. They discovered 5 nodes in my lungs. I had the breast surgery and I had breast surgery 3 more times for lobular cancer in situ. The doctor I went to for the lungs told me, after a lung biopsy, to go home and pray for the best, and expect the worst.

My breast surgeon recommended I go to Memorial Sloan-Kettering Cancer Center in NYC. I did, and the thoracic surgeon knew immediately it was a metastases from the uterus. No one made a fuss over it being LMS. I did not know it was so rare and hard to treat. I asked questions, got no answers. She did both lungs at the same time with a bilateral clamshell thoracotomy. Cutting down from the armpit under the breasts and across the chest up the other armpit. My tumors were hanging outside the lungs like icicles (spindle cells). Almost 3 years later I had to have the same operation for 4 more nodes in both lungs. This is a very painful surgery because it hurts to breathe in the beginning and the sternum hurts from being opened. Only thing was the drugs hyped me up so badly, I never slept and couldn't rest in bed. This time, I asked for someone to come down and see me from the Pain Clinic. It was a big help. I had an epidural and the PCA pump. I don't know why my first surgeon did not tell me I didn't have to suffer the way I did.

I have never had chemo or radiation. I have a low grade LMS. I was very lucky that I could be a candidate for surgery. I have other health problems that do not allow me other options. I am lucky to be alive. I say it is luck because I have been neglected and not followed up, and I am still here. I have another node that grew back 4 mos. after my last surgery. How? No answer but that it happens..... it has not changed and the surgeon said it is too difficult to keep opening up a person to get to the lungs, so we wait and watch. There have been changes but not significant ones YET. My last lung surgery was 3 yrs. ago and the first 6 yrs. ago and I remain stable. The tension, surgical trauma and arthritis that has set in from all the upper body surgeries of all these years is finally getting to my nervous system. Dealing with my other health problems is a challenge too. I have an autoimmune problem called celiac disease. It requires a special diet. If I don't stay on it, it could cause an intestinal lymphoma over a long period of time. I also have an IgA deficiency which complicates treatments too. This causes me lots of infections and a leaky gut syndrome (malabsorption)which allows many allergens to pass through the gut into my system causing multiple allergies.

I know a lot of you would say you would change places with me in a minute, but believe me, it is a tough road to walk when you have other serious health problems as some of you who have other problems know. My sympathies go out to all of you having surgery and taking chemo and with the challenge of other health problems to deal with too. It is not easy. Take care, be well, be strong. Hang in there. Miracles do Happen. I am still here.

My fight is ongoing. I had surgery to remove an 7 cm retroperitoneal tumor on March 8, 2000. It was encapsulated and taken out. No other tumors. It was LMS again. After almost 19 yrs, it returned to the scene of the original crime in the pelvic area. No two cases are alike and this has never happened before after so many years. I went back to MSKCC again. The tumor was growing out of a nerve and I feel lucky I can still walk. The nerve was removed along with the tumor. I have a little problem with the leg which I hope will resolve itself with time!

I had another recurrence in both lungs. It was discovered when I took my ct scan on Jan 23rd, 2001. I have 5 more nodules. Very small. I am going to try hormone therapy because the last tumor tested was progesterone positive. I am starting Megace which is an antineoplastic and anti-progesterone steroid hormone. If that doesn't work, we'll try Arimidex. I had not had a recurrence in over 5 yrs to my lungs and who would have thunk? Cautiously optimistic....trying to avoid another bilateral clamshell thoracotomy.

I have been on hormone therapy 9 months now and am stable. I have been taking Femara (letrozole) now for 3 months as megace was giving me digestive problems. I was reclassified as having endometrial stromal sarcoma because I have hormone receptor positive cancer (progesterone) that is responding to hormone therapy. I still have 5 nodes between both lungs but they have not changed at all. All women with uterine sarcomas should have hormone receptor testing on their tumors. You may be eligible for noninvasive treatment instead of having more surgeries.

I have been off the Femara for 3 months now and my scans show I remain stable with the lung mets. My cholesterol went sky high from this drug. Everyone who takes it should have their cholesterol checked, if they are not taking a statin or can't take one. I will not be taking any aromatase inhibitors until such time as I get growth. I may or may not have growth as I have been on these type of drugs for 7 1/2 years. My body needs a rest just as people on chemo need a rest. I am stage I, Recurrent disease 4x (lungs, lungs, retroperitoneal area, lungs) Stable for 3 years. On June 24 I will be a 23 year survivor!

June 24th, my family and I celebrated a duel anniversary, my 25th year of survival of low grade myxoid LMS/ESS and our 50th wedding anniversary.

My lung nodules started to grow again after my break of 1 year and 8 months. I am back to taking Femara again but on a different schedule. I am taking it 2 months and 1 month off. This works for me. I am still stable with 5 lung nodules. I still am being followed closely but we hope to avoid some of the unpleasant side effect without resorting to other drugs.


I will be celebrating my 27th cancerversary June 24 and stage IV for 15 years with LG myxoid LMS/ESS. In 2000, after my retroperitoneal surgery, I was reclassified as having ESS(endometrial stromal sarcoma). I still have mixed cells. I still have more than 5 lung mets between both lungs and still taking Femara which is keeping me stable. I am on a different schedule to prolong taking Femara and to try to reduce the painful bones of the side effects of taking it. It exacerbates arthritis. I started this drug in 2001 and have been taking breaks from it. I will continue taking it for as long as it will work on a lesser schedule and not every day. 2 weeks on, 1 week off, 1 week on, 2 weeks off.
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At the time of my initial diagnosis I was & still am, living in a rural area of Ontario, Canada about 100 miles from the nearest large city where I had my medical appointments & surgeries. The nearest small town is about 30 miles away so I am fairly isolated & at the time I did not have Internet access. I have just recently been able to have that connection & strongly believe that had I been online in 1991 my cancer journey would have been quite different with so many resources now at my finger tips. Also I was working as a Case Manager for the Home Care Program in Ontario. This involved assessing patients in hospital for the necessary visiting professional health care services that they would require, when they were discharged home. I therefore had access to read their files & was quite used to reading medical reports.

PRECEDING DIAGNOSIS

At the beginning of1991 I was being treated for an ongoing medical problem that had become quite unmanageable through 1990. My gastroenterologist as part of his treatment, put me on a strict diet, basically low in fat & carbohydrate & as I was getting some relief from being on this diet I adhered to it quite strictly. Naturally with a diet like that, weight loss was to be expected , however it was not until I returned to the gastric specialist in early July that an abdominal ultrasound was ordered to rule out any other reason for the weight loss. The doctor mentioned some of the possibilities including malignancy but added that he did not think I would have a malignancy as I was not presenting with any specific symptoms. Apart from the weight loss I was actually feeling better and my ongoing symptoms were being more controlled by being on the diet.

A CANCER DIAGNOSIS: A Waiting Nightmare

On the 18th July 1991 when I returned for the results of my tests my doctor said, "I do not know any other way of telling someone bad news but to come right out & say it." He went on to tell me that I had a tumor in my left kidney, one in my liver & also one in the inferior vena cava i.e. the main vein leading to the heart. The best possible scenario he explained, would be that it was a lymphoma, but he was concerned about the spread to the liver in particular. He was going on vacation the next day but assured me that he would have me referred to a urologist before he left.

MULTIPLE OBSTACLES IN REACHING A CONCRETE DIAGNOSIS

24th July. Appointment with the urologist. He did not have my ultrasound report & therefore spoke to me about the verbal referral he had from the gastroenterologist. He did not feel he could give me any further information as he had not seen the ultrasound. Ordered a CT to be done.

29th July. CT done & I had to wait in Toronto until the 31st July (my birthday) to get to see the urologist for the report. He had not seen my scan & went searching for it in the radiology department without success. He did have a verbal report on a note attached to the front of my file but was reluctant to "make a final decision" on a verbal report. He did tell my husband & me that I had cancer in my left kidney, liver, lymph nodes & the inferior vena cava. He said it was most likely renal cell cancer & it was stage 1V & that there was no treatment for this type of cancer except for some experimental drug therapy which was not showing much response at the time. Prognosis not good, six months maybe as long as a year, if I was lucky. He did order a kidney biopsy to confirm that it was renal cell cancer & as he was leaving for three weeks holiday soon he arranged for his secretary to be able to give us the results by 'phone. That was some birthday present!!

2nd August. 'Phone call from my family physician stating that the biopsy was scheduled for 8th Aug. & that I was to phone the hospital to confirm the pre biopsy protocol. 'Phone call to the hospital & was informed that they had no record of my booking for a biopsy. Requested to be transferred to Urologist's office. A different secretary did not know anything about my biopsy. I told her what I knew & that I wanted this biopsy to be confirmed that day. She said she would call me back which she did, with the instructions for me to follow prior to the kidney biopsy, now finally booked & confirmed for the 8th Aug.

8th August. At the hospital the nurse asked me to confirm that I was having a hepatic (liver) biopsy before I signed some forms. I told her I was there for a renal (kidney) biopsy. "That's not what I have written here," she said. I told her to call the radiologist, it was fortunate that I had asked who would be doing the biopsy when speaking to the secretary at my urologist's office on the 2nd Aug. & had learned that it was the same radiologist who had done my ultrasound. I was able to tell her his name & he confirmed that I was there for a kidney biopsy.

I had written a list of questions for my husband Ron, to ask the urologist while I had the biopsy. The urologist told Ron that he had finally reviewed the C.T. films & that it was "inconclusive" that I had renal cell cancer & that there was "a glimmer of hope that it may be a transitional cell type cancer". This was good news as there was chemotherapy treatments for transitional cell cancer, but if it was renal cell that was not an option. By this time we had heard the word terminal a few times. So I clung to the hope that it was transitional cell cancer. We were told to call the secretary on the 16th Aug & she would give us the biopsy report.

16th August. 'Phoned for biopsy report. Told by the secretary that the results were negative & that more tests would have to be done but that they could not be booked until after the doctor returned from vacation in three weeks time. I knew that the results could not be negative as I had seen how large the tumor was & the evidence of spread. I told her I was not prepared to wait another month for 'further testing' to be arranged. She told me I did not have any other choice as my doctor was away. I told her that I was driving down the next day & that I would sit in her office until someone saw me & ordered my 'further tests'. She got quite upset & told me that I could not do that as I did not have an appointment with anyone. I told her that I would be down & somehow I would see another doctor.

17th August. Arrived at urology department & again confronted with, "your doctor is away for three weeks & you do not have an appointment." "I am going to sit here until I see one of the other urologists," I told her. I sat for a while then I was shown into another urologist's office. I recognized his name as one that I had read on many reports on patients' charts during my work. He was quite understanding & spent a long time with my husband & me that day. Talking about the differences in the two cancers & their treatments. He also agreed that there really was no effective chemotherapy or radiation for renal cell cancer & that is why it was important to know the specific type. He did have a copy of the pathology report from my kidney biopsy but said the results were "inconclusive" & that the only way that we could be sure that it was 100% for either cancer was to have the biopsy repeated.

22nd August. Was admitted to day surgery & prepared for 2nd biopsy. Just before entering the procedure room the radiologist came up to me & said I don't think that we need to do a second biopsy. I immediately asked him if he was 100% sure that it was one or the other cancer. He was taken aback. "well we are pretty sure from the blood taken around the tumor at your last biopsy that it is probably renal cell". That did not sound like 100% sure to me so I told him to 'phone the doctor who had ordered the second biopsy & discuss it with him. This he did & returned later to say "we have to do this second biopsy to be actually sure"

3rd September. Appointment with urologist. Biopsy report confirmed that I had renal cell, clear cell carcinoma. He reviewed the C.T. report with me. Apart from the kidney tumor, there was a metastatic tumor in the liver & a small thrombus in the inferior vena cava & some lymphadenopathy. If I had only the kidney tumor it could be removed surgically . The presence of the metastases was not good especially the tumour in the liver, specifically it's location in the liver. He likened it to an apple, & said the tumor was right in the core, & it was therefore in his opinion inoperable. He again explained that chemotherapy or radiation was not an option for this type of cancer. He remarked on my fairly good physical condition & said he would consider the possibility of doing a laparotomy to determine the amount of lymph involvement & that if there was more that one lymph node involved he would probably not proceed further. This possible surgery would only be considered after I had been assessed by another surgeon with regards to the tumor in my liver. That particular surgeon was also on vacation & he arranged for me to be assessed by him at the end of the month.

At this point, my husband & I decided to go to Britain to visit my step-mother as she was quite concerned about me & as we had been told that my condition was terminal, even if the surgery was possible, it seemed that this would be the best time to have a visit home. I had asked for a third opinion at a different hospital & that appointment was to be in October, close to the date of the assessment by the surgeon with regards to the liver tumor.

6th October. Assessed by surgeon with regards to the liver tumor. He agreed that it was probably inoperable but that I would have to have further investigations arranged. His office was to call me when they had been set up.

10th October. During the evening I experienced severe abdominal pain for a few hours & then told my husband that I thought that I should go to the local hospital which is 30 miles away. It was 11pm & somehow I managed to drive down to the hospital, slowing down a few times when the pain was too severe to drive my vehicle. My husband, who has been sight impaired since birth & had never been able to drive kept saying, "at a time like this I really wish I could drive for you". At the hospital I was diagnosed as having a bowel obstruction. I had had several abdominal surgeries over the years & I was well aware that a bowel obstruction was always a possibility, but this was the worst possible time. I was scheduled for my third opinion appointment on the 12th October & I was determined to keep that appointment at all costs.

I tried to explain to the admitting doctor my long saga of waiting & delays for a decision about possible surgery to remove my kidney but I realized that it was almost impossible for this doctor in emergency to try to comprehend my story. Fortunately I carried a letter from my family doctor with me at all times stating, that should I be admitted to the emergency department that he was to be contacted immediately as my medical history was so complex. He had given this letter to me two years earlier & it had nothing to do with my cancer diagnosis. He was consulted on the 'phone & I was able to speak with him also. We agreed that I would be treated with I.V. fluids until he was able to see me in a few hours. When he arrived I was able to share my concerns about missing my next appointment in the city & told him that I wanted to go home. This was out of the question but he did say that he would watch me carefully & make sure that I would keep my appointment providing emergency surgery could be delayed that long. I certainly did a lot of praying for the next 24 hrs that I would not need that surgery.

12th October. I was transferred by ambulance to my appointment in the city accompanied by a nurse as my condition was far from stable. This urologist immediately arranged for me to be admitted to the hospital where he was head of the urology department, first of all to be assessed with regards to the bowel obstruction. This assessment was supervised by a general surgeon who was made well aware of all the circumstances of my involved case. He assured me that he would do everything possible to avoid surgery as he knew that that would certainly delay any decisions about the possible surgery for the renal cell cancer. While I was in this hospital being observed & treated conservatively for the bowel obstruction, the urologist ordered further investigations into the kidney cancer. He also ordered a liver biopsy. This was done while I was in the hospital for which I was very glad as I had some severe complications following that biopsy & I was in the best place for this to be dealt with. Fortunately the bowel obstruction resolved by itself, this was my first bit of good news for a long time.

I was discharged ten days later by the general surgeon & we immediately went to see the urologist in his office before the long trip home. He had told me previously that he was probably the most aggressive in his approach to surgery of the urologists I had seen, but again the major concern was the tumor in the liver. When I saw him he told me that the liver biopsy was "inconclusive". One pathologist said it was renal cell, another said he was not quite convinced that it was & a third pathologist stated he just could not be sure if it was renal cell or not. I had always thought that pathology was more of an exact science but I was learning that indeed it was not. This urologist told me that the latest tests did not indicate that there was a thrombus in the inferior vena cava!! So based on the "inconclusiveness" of the pathology report of the liver biopsy he proposed to do a laparotomy, but would be more aggressive in his attempts to remove the kidney & lymph nodes as this was the only option open to me & that the tumor in the liver would be monitored only, because it was not in a location that was accessible by surgery. The surgery was booked for the 31st October.

It had taken from the 18th July until the 24th October for this decision to be reached. To say the least, that was an extremely long time to endure such enormous stress & uncertainty. In all the years that I had been involved with the medical profession I could not recall another case that could even compare to this horrible delay.

I have described the above events in quite a clinical way as I felt that this was the best way to describe the sequence of events that took place to reach a decision to try surgery with no guarantee that the kidney tumor would be removed, & if it was removed my condition was still being referred to as terminal.

COPING WITH THE ABOVE EVENTS

I was alone when I first heard the news from my gastroenterologist. My husband Ron was at the other end of the city for an appointment with his ophthalmologist. The news was devastating & shocking & I tried hard to focus on the information that was being given to me & all the time wishing that this was just a nightmare that I would awake from. I did not cry or scream. I had been told bad news before on two occasions when I had suffered life threatening hemorrhages & both times I had been told that if the bleeding continued my chances of life looked quite poor, but at those times I was in a hospital setting, too sick & heavily sedated to do much about my situation.

This time I was feeling in fairly good health & acted more stunned than anything else. My doctor arranged for his nurse to track down my husband at his appointment, as he did not want me to drive alone to my mother in law's, who lived in the city, during the rush hour traffic. So that is how I had to tell my husband. I was standing in one doctor's office talking to him in another doctor's office by telephone & telling him that I had some tumors & that the news was not good. From that day on my husband accompanied me to every appointment. He would sit quietly while I spoke with the doctors & rarely interrupted as this was all quite foreign to him. I never told any of the doctors of my involvement with the medical profession but Ron said that they must have wondered at the terminology that would sometimes slip out when I was speaking. I felt that by not telling them they would be more explicit & present the information in a way that they thought I would be able to understand. I may have been able to understand most of the medical terminology, but now I was the subject of that terminology & needed to understand as much as I could. In other words I was no longer in a position to be objective or somewhat removed from the "case" that was being discussed. We were talking about ME.

I was very fortunate that I had such a supportive husband. He unfortunately felt quite helpless & very frustrated about the fact that he could not even drive me to my many appointments. He was appalled by some of the words & attitudes that some of the doctors used & frustrated by all the delays, loss of reports & the ambivalence of some of the reports.

THE WAITING

I have often been asked how I coped during this very stressful time & the short answer is "because I had to" but of course in effect it was an extremely fearful & overwhelmingly frustrating time. The three & a half months of waiting for a decision about surgery was the worst time in my life. I had never known a case to take so long to reach a decision in all my years of experience with the health system. Fear & anger arose especially about this. The longer the delays the angrier I got, and it was this anger that drove me to be more assertive & at times quite aggressive with some of the doctors & their staff especially around, "lost reports", poor & non communication regarding procedures, & being told, "you can't just come without an appointment." It was my life & I was fighting for whatever was left of it.

I dreaded every appointment, not only because the news was not good but I never knew what new obstacle was being presented to me. I used to get that sick feeling in the pit of my stomach every time I went through the doors of the hospital for my appointments.

However I truly believe that if it had not been for my anger driving me all the time, the decision about surgery would have taken much longer to reach & I do not think that I would be alive today if I had been content to move at the pace caused by yet one obstacle after the other. As an indication of just how long this process was, just a personal aside. After the appointment when I had first been told that I had cancer, my husband's Aunt who lives close to us, was investigated and diagnosed with cancer, had six weeks of treatment & was back home & I was still waiting!!.

ISOLATION

This was a big problem. Geographically & socially. I had worked full time until two weeks before my first appointment when my family doctor insisted that I take some time off work to see if that would help the ongoing medical problems that I was experiencing. My workplace was about thirty miles away & I was not used to being home all day. We live in a fairly isolated area so this meant that I had little contact with people. When I did speak to anyone & explained that I had cancer the immediate response was "well what kind of treatment are you going to have"? When I explained that there was no effective chemotherapy or radiation therapy for this type of cancer, that immediately ended the conversation. Many people would either 'phone or ask my husband how I was & he would relay the message to me. I finally told him, "the next time someone asks you that, just say 'why do you not ask HER' the next time that you see her". Not many people wanted to talk to me about it.

TELLING MY FAMILY

As I am originally from Scotland, most of my family are living in Britain & I had a sister living on the Island of Mallorca. So initially I wrote to them with my news. My step-mother immediately phoned back as she was very concerned. It had not been too long since she had looked after my father at home until he died of Non Hodgkin's Lymphoma, so it was a great shock to her. That was one of the reasons why I decided to go over to visit her in September 91. I looked quite well & felt this would reassure her somewhat.

The most difficult person to tell was my daughter who was pregnant with her first child at the time. She was also working then for a medical services firm & one of the doctors she worked closely with was a pathologist, so I knew that she would be asking him many questions. She 'phoned to see how my appointment went & fortunately my husband answered the phone. That was when I nearly "lost it". I had to tell him that I would have to call Fiona back later, as I knew that I would have to choose my words carefully. How could I tell her this bad news when she was so happy & excited about her pregnancy? I called her back & we talked for a while, and she told me that she would be up that weekend to see me. I learned from her husband much later, just how upset she was for quite a long time. When we were together we would talk about what was happening about my appointments etc, & then we talked much more about the forthcoming birth. I made that my most important goal. To stay alive until my first grandchild was born. He is now five years old & his sister has just had her first birthday!!!

MY KIDNEY SURGERY

I had a left radical nephrectomy performed on the 31st of October 1991. The left kidney & the left adrenal gland were removed & four lymph nodes. Only one node was positive, so that was encouraging. I was discharged on the 8th day but I had poor pain control & it was a Friday. That weekend I had to have someone drive me to the local hospital 30 miles away on three occasions, as the pain was so bad. As it was the weekend, there were just visiting doctors on call & they just changed my pain medication & increased the amount but it did not do anything to relieve the pain. On the third trip I refused to go home & waited in the emergency department on a stretcher until my family doctor came back on Monday morning. He was very upset with the way I had been treated & it took another week in hospital & several weeks of attending a pain control clinic to finally get most of the pain controlled. All because I did not have proper pain control while I was in hospital recovering from the surgery. I had told the doctors there for the three days before I was discharged that I was not sleeping because of the pain & although the medication was changed it was still not effective. It was not until 1995 that I was to find out what was causing some of that pain.

ONCOLOGY APPOINTMENTS

I had asked the surgeon & the other urologist to refer me to an oncologist. They replied with, "There is no other treatment that is effective for you". I was aware that some people were involved in clinical trials so I finally got my family doctor to refer me to an oncologist not long after my surgery. It was however quite apparent that that particular oncologist was greatly influenced by the surgeon so I did not go back to her again. I then was referred to an oncologist in a different hospital & he basically told me to go home & prepare to die. I had heard the words terminal, palliative & nothing else could be done, far too many times, that it is amazing that I just did not go home & give up. But I didn't. I did start to receive visits at home from a palliative care volunteer & we had some very uplifting conversations about many topics but not of dying. I am still in contact with that volunteer today as a friend. She is a wonderful & amazing person & I did enjoy her visits but she quickly realized that they were not needed & then kept in touch by 'phone & now by e-mail. I did finally get connected to a third oncologist through my own attempts & with the help of a friend in the city, & this oncologist at least was willing to listen to my concerns & was readily available by 'phone & a good communicator. She told me, that at that particular time I was not eligible for any clinical trials but that she would continue to see me & keep in contact with the other doctors involved with my care.

MY WELLNESS PLAN

Having heard so many times that there was no other treatment for my type of cancer I decided it was therefore up to me to stay as well & strong as I could. In essence, I decided to take control of the cancer rather than be controlled by it. I initially set up a daily schedule for myself which included, rest, exercise, some changes in diet, listening to relaxation tapes, time set aside for some of the things that I really liked to do & family time & avoidance of stressful situations, to name the main items. This of course changed with my level of activity & I also set small but reachable goals for myself.

It was quite by chance that I later found a brochure in the oncologist office one day on a course called "Helping Yourself" A Cancer Coping Skills Training Program. It was very new & was being led by Dr. Alistair Cunningham at the Ontario Cancer Institute. Dr Cunningham or Alistair, as he prefers to be called, has doctoral degrees in cell biology & in clinical psychology. He was also a former cancer patient himself. My husband & I enrolled for a weekend course & we both found it very helpful. There were sessions where the whole group participated & then we were split up into groups. One group was for the "support people" & this was invaluable to my husband as he had never been able to talk to other spouses/support persons & he learned many useful tools for coping that weekend. I was surprised to find out that much of what I had built into my "Wellness Plan" was discussed at this course, plus much more in depth strategies for coping, & deeper relaxation techniques, meditation, imagery & visualization techniques. The course provided us with two audio tapes on the just mentioned subjects plus a workbook for us to use at home. We were certainly thankful for that weekend & met many supportive & caring people.

ONGOING MONITORING OF LIVER TUMOUR & DISCOVERY OF NEW LIVER TUMOUR

This consisted of C.T.s, ultrasounds & chest X-rays & my family doctor added a yearly bone scan to the routine. The tumor was growing very slowly but it was increasing in size approximately 3.2 x 2.5 x 2.9 cms. My oncologist once remarked that I must have a great immune system. However the C.T. report of Nov 1994 showed a new tumor at the edge of or just adjacent to the existing liver tumor & recommended that it be biopsied. I was scheduled for an ultrasound the next week as part of my regular check ups & that confirmed the C.T. report. However the surgeon did not seem to think anything should be done about it!!

In the interim since my surgery in 1991, I had had numerous problems at attempting to communicate with this surgeon's office. More than once my appointments were cancelled & I was not notified. So I would arrive after a long journey just to be told that the doctor was not available for various reasons & I could come back the next week!!! I had many heated arguments with his secretaries, yes plural, as he did not seem to be able to keep a secretary for very long. I even approached the hospital administration who promised to look into the problem. After not hearing anything back in two weeks, I contacted the administrator's office again & they had decided that they would not intervene as it was a doctor/secretary issue & that the doctor was the one who would have to deal with it. I had spoken to him about the problems many times but nothing improved. I had also relayed my concerns to my family doctor but he had been reluctant to refer me to another doctor as the one I had, "was the best in his field". Other doctors had also assured me, using those same words. He may have been the best in his field but he was no longer the best doctor for me.

When my family doctor realized that the surgeon was not going to do anything about the new growth he finally agreed with me that I had to change doctors. Fortunately I remembered the name of the radiologist who had performed my first liver biopsy in 1991 & I managed to get referred to her.

A NOTE OF EXPLANATION

Referrals to a radiologist are normally made by a doctor in the same hospital & when I showed up for the biopsy the radiologist asked how I had managed to get referred to her. I explained my situation to her & as she was quite interested in my case she did go ahead with the biopsy. Again the result was renal cell, clear cell cancer exactly the same as the initial report of 1991 when they were compared. So from there I was referred to the head of the liver transplant team for assessment.

A DAY OF BAD NEWS TIMES TWO

I received a phone call one day from my family doctor's office asking me to come that evening to see him. My daughter who was at work also received a similar call. Her appointment was half an hour earlier than mine. She drove from work & I from my home. When I arrived she was already in one of the examining rooms & I was shown to another room so we did not see each other. When the doctor came in to see me, that was when he told me that I had a new tumor in the liver. He also told me that he had had to tell my daughter bad news. He described that day as one that he had never experienced before & one that he hoped he would never have to experience again.

My daughter had had what was thought to have been a sebaceous cyst removed from the back of her scalp & had been assured that the chances of it being a malignancy were less than one percent. The pathology report confirmed that she had a type of sarcoma called dermatofibrosarcoma protuberans. He went on to explain that it was a very treatable type of cancer & that she would only require one more surgery soon, to ensure that the margins of the operative site were clear. He then said I wish that your case was as easy to treat.

My news was bad enough but the news for my daughter was absolutely devastating, it was completely unexpected & extremely difficult for us all to comprehend. I spent most of that night at my daughter's home talking & reassuring her & in a way my news was secondary as I knew that there was always that possibility of further metastases so my thoughts were primarily for my daughter. It did make me wonder what was happening in our family history. No history of cancer on both sides of my family until over the age of eighty & just a few months before this my sister & a cousin had died of ovarian cancer exactly one month apart & now my daughter also had cancer.

I am glad to say that to date she has only had the two surgeries & appears quite well & has had her second child after that diagnosis.

WAITING AGAIN

I had my first appointment with the surgeon for assessment for possible liver surgery on the 14th of Feb. He was very direct with me which I liked. He explained that he had never done liver surgery for renal cell cancer before but had for other cancers. He told me he would proceed as quickly as he could with the many tests & procedures to determine if the tumors could be removed. He explained that if the tumors had been in a more superficial area in the liver that it would have been an easy decision to make but that because of their "core" location, many possible complications would have to be ruled out. He also went on to say that as it was a complex "case", at every step of the investigational journey he would be consulting with his liver transplant peers & all members of the transplant team & it would be a team decision. I had to ask of course what his opinion was at that first appointment regarding the possibilities of surgery & he could only reiterate what he had already said, it was too complex at that stage to give any opinion.

The many tests started the following week, mostly as an out patient, but I was also in hospital for one week for the more involved procedures. This investigation period took almost eight weeks to complete & it was an agonizing wait. Sometimes I would get the feeling that I was going to have the surgery & at one time I was told by an assistant (who was in charge while the surgeon was away) that the decision for surgery to go ahead had been made & then that was changed as further consultation with the peers was necessary for further evaluation of my case. Quite often after an appointment it appeared that the surgery was not going to be an option. This surgery was going to be a "first" for this surgeon & he wanted to make the right decision for everyone. The one thing that I did appreciate was the fact that he gave me several ways to contact him anytime I wanted to speak with him & if he was unavailable during liver transplant surgery I could always reach one of his team.

On April the 4th 1995, the surgeon had a long talk with my husband & me. Basically, he was willing to attempt to try to remove the tumors by removing about half of my liver. There still was a real concern that the tumors could not be removed from one of the hepatic veins & if that was apparent when he got to the liver tumors he would not proceed any further. He outlined all the possible dangers of the surgery & although he was willing to do the surgery he could give me no guarantees about the outcome. It was quite scary to hear all this information but I did not really have any other choice, in my mind & my husband agreed with me.

The surgery was scheduled for the 13th April & I am happy to say that it was successful. The surgeon was ecstatic as he had used a new technique during my surgery & as he told me later. "Now I'll be able to try that technique on other patients thanks to you." He also said that since I was first diagnosed in 1991 the improved techniques learned from doing liver transplants had been a factor in his ability to do my surgery now.

I had been told that I would be in intensive care for two days but when I was transferred out to a room my husband had to tell me that I had been in the intensive care unit for five days as there had been some complications on the second day. I was able to leave the hospital twelve days after surgery & I stayed down in Toronto at my mother in law's for two more days but I was anxious to get home. The morning after I got home I woke up & had difficulty breathing. My family doctor made a home visit & although he was reluctant to do so, he had me sent to the nearest hospital for chest X-rays as he had some concerns. The X-rays confirmed that my right lung had collapsed & that there was also some fluid surrounding that lung. It was decided to treat me at home to lessen my chances of getting an infection in the hospital & I received professional health care visits in my home for about six weeks, during which time I recovered slowly.

N.B. At my first C.T following this surgery the radiologist asked me to wait & see him. This was the first time that I had been asked to wait & I thought that something had to be wrong. First of all he told me he had wanted to see me as he had been looking at the scans of my initial liver tumor for three & a half years & that he honestly did not think that it could be removed successfully. He was very interested in what I could tell him about the surgery. He then went on to tell me that at this particular scan as there had been no tumor to concentrate on, he had reviewed all my films carefully. Evidently at the time of my first surgery my diaphragm had been torn & subsequently I had a hernia there. As a result of this hernia part of the large & small bowel had moved through the hernia into the chest cavity. He admitted that it had been missed before because the emphasis had been on the liver tumor.

So this was the explanation for the continued pain in my left side often accompanied with vomiting since my first surgery, but anytime that I brought the subject up I was told it must be due to the adhesions I had from the many previous abdominal surgeries I had had in my lifetime. I still get these episodes of pain & vomiting but the only way to relieve it would be to do further surgery & that was not recommended for me in 1995 as I was still recovering from my liver surgery. It is something that will have to be corrected in the future. I am certainly glad to know what the cause is, but I am still quite angry at the first surgeon for not responding to my complaints about the post operative pain & thoroughly investigating it & for not acknowledging that there could possibly be a problem.

CONCLUSION

I have learned many things along my cancer journey & met many wonderful & supportive people. I quickly learned the importance of being my own advocate & I made sure that my husband was with me at all appointments. An extra set of ears are invaluable at these stressful times. Like so many other people who have been diagnosed with cancer, I learned to appreciate every minute of every day. I take pleasure in every small achievement & many of the things that I used to think were so important in my life, I have learned are quite meaningless. One of the 'books on tape' that I especially liked to listen to was "Head First. The Biology of Hope" by Norman Cousins. Despite the grim diagnosis & prognosis & continually being told that there was no treatment to be offered to me & words like terminal & palliative, I never gave up hope. I have always been quite open about my cancer & although it may have driven some people away initially, many of my friends have now thanked me for being so open, as it has made it not only easier to talk to me, but also to others who are diagnosed with cancer. Most of all I have learned to have fun.
IMPORTANT THINGS TO REMEMBER

Each person's cancer story is unique & each individual will find their own way of coping. Some key factors that I have found to be helpful are listed below in no specific order of importance.

* Be a full partner in your medical care.
* Gain as much knowledge as possible about your cancer & the treatment protocols.
* Keep your physical health & immune system as strong as possible.
* Go to each appointment/test armed with many questions & make sure that you get them answered.
* Never give up hope.
* Always ask for a second or third opinion.
* Make each day count.
* Be your own advocate.
* Try to find harmony in your life. Physical, mental & spiritual.
* Make special times for your family/friends.
* Have confidence in your doctor & if that is lacking, change doctors.


I have just read my most recent C.T. report and it reads, "there is no evidence of recurrent or metastatic disease in the chest or abdomen". This is a great report & one that I could never have imagined was possible in 1991 when I was being told that there was no treatment for me & heard the prognosis of six to twelve months. I am so glad to be alive & I thank God for that every day.

I have just completed my CTs of chest, abdomen & pelvis & I am very happy to report that there is no evidence of disease -- this after a stage IV diagnoses in 1991. These scans are scheduled for every six months & are done earlier when there is any question of something suspicious on the scans. I have had a few scares with regards to this, but on repeat scans it has been established that there is no sign of metastases. This is extremely encouraging news & I am enjoying life to the fullest with the support of my family.

I am glad to report that I am doing well & enjoying life with my husband in a new location. We moved 2 years ago as my husband had been diagnosed with a rare muscle movement disorder called Dystonia in 1995 - just after my liver surgery. The muscles affected are in his face, jaw, neck with some shoulder involvement. So once again our life style was changed drastically & this led to us moving to a rural area closer to some bigger cities in Ontario. Canada.

Interestingly, some of the techniques I used in coping with my cancer proved to be helpful to my husband in coping with his dystonia, so in one way he was 'ahead of the game'.

I continue to have six monthly chest, abdomen & pelvic CTs & my most recent ones were last week. The reports state that apart from a 1 cm stable nodule on my right adrenal that there is no evidence of metastases, so great news indeed.

I continue to enjoy every day & have a very busy & full life. The grandson, that I prayed so hard to stay alive to see born in 1991 after my poor outcome prediction by many doctors, is now 12 years old & he has a sister 4 years younger. They are so special to me & to think that at one time I was told I may not live long enough to see my grandson born!!!

I still believe that holding on to 'Hope' was invaluable to me & I hope that no one ever takes away hope from anyone who is fighting this disease of cancer.

I would like to thank Steve Dunn for including these patient's stories in the Cancerguide website. I do receive many emails from people all over the world who have read my story & I try to provide some resources & support to these fellow cancer patients.

One person who read my story was Rick Tippe, a singer/songwriter from B.C. He does not have cancer but has family members who have different cancers. He was inspired by my story to write a 'Song for Cancer Survivors' called "Keepin' The Faith" in 2000 & all proceeds went to the Canadian Cancer Society - so thanks again Steve for providing the opportunity for the more funds to be directed to a great Cancer Society.

I hope that my story will be an inspiration to some & bring hope to many others. If I can be of any help to anyone or if you have any questions at all, please e-mail me at n_curzon@interhop.net


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