Invasive Lobular Carcinoma - metastatic breast cancer

In 1994, at the age of 35, I had no idea what ILC meant. It didn't really matter then, because after my first mammogram and ultrasound the conclusion was that the palpable lump was a benign cyst or a fibroadenoma. No additional tests were done. I was happily ignorant. I mean, we trust the "experts" don't we?

First visit to the hospital
The fine needle aspiration biopsy in february 1997 wasn't my idea. My GP suggested it at my annual checkup.
After the needle thing, the pathologist said everything was fine, fine, but I had to remove the lump just to make sure. The lump was removed shortly after. The whole scenario struck me as odd. Why did the lump have to come out if nothing was wrong?

The diagnosis
Two weeks later the hospital called - 12. March 1997 - the day after my 38th birthday. "This is doctor so-and-so; we have received the pathology report, it's cancer". I could not for the life of me understand that the man was talking about me. All I could say was - Oooops! He explained what was to come. Modified radical mastectomy. My head was filled with white, cold silence. So it was cancer after all. Why wasn't it discovered in 1994? I had to tell my husband. He had lost his first wife to cancer. I felt as if I was about to ruin someone's life.

The hospital
Two invasive lobular carcinomas, 1.2 and 2 cm. Multiple foci of Lobular Carcinoma in Situ around both tumors, indian file patterns. That's what the pathology report said.
A modified radical mastectomy. It means they're chopping off the whole thing. They also removed the lymph nodes in my armpit. I learned after the operation that they had found two invasive lobular carcinomas and extensive Lobular carcinoma in situ around the two tumors. It could also be one tumor, measuring 5 cm, the area between the tumours was difficult to determine. The cancer cells were Estrogen, Progesterone and pS2 positive. My lymph nodes were cancer free, but the resection margin was not clear.
I had a speedy recovery. The swelling (fluid accumulating) in my armpit was uncomfortable and they removed some after a few weeks. After I got out of hospital I walked around looking like Napoleon for a while, protecting the left side of my chest. Having someone bump into me didn't seem particularly appealing. My left arm and shoulder were stiff and painful.

More surgery
In April I had surgery on my thyroid gland. They had found a lump they were afraid that it could have some connection with the breast cancer. Fortunately, it didn't, I just got another interesting scar.

Radiation
I started radiation therapy in May. The lesion had been close to the chestwall and there was risk of recurrence. The radiation staff was very supportive. They told me that my skin would become sore. 'Sore' is a mild understatement. After 30 treatments my skin began to peel. It looks pretty awful, a heavy sunburn covered with green gore, painless but extremely "hot". Every week I went for blood tests and consultations at the cancer unit. I didn't like going there, I always felt as if I was needlessly taking up their time. I think they found my case rather boring. After a month I stopped taking Tamoxifen. Not the smartest thing to do perhaps, but I did, I didn't fancy an early menopause. The doctor was most displeased with my decision.

The loneliness
I finished my last radiation treatment at 10 am on 3. July 1997. A few hours later we were off to France on holiday. I had a heavy heart and I felt very lonely. My chest was burning, it was moist from the skin peeling. I couldn't wear a bra. It was so ... awkward, so ugly. I guess I shouldn't have gone to France in the first place. I felt "wounded" - mutilated and unhappy.

I never told anyone about how I felt. I tried to put on a brave face pretending that it was all a piece of cake. When I realized my mistake, it was too late. My pain had become outdated. Why was it so difficult to ask for help? My family, my friends, my colleagues, the hospital staff were probably all there for me - I just wasn't able to cry on anyone's shoulder. I just froze. It must have been the loneliest time of my life.

A controversial decision
In November 1998 I had a prophylactic mastectomy on the remaining breast with immediate reconstruction. It was a controversial thing to do, but I found it better than having mammography every 6 months and the anxiety that goes with it, I was so fed up with cancer. Besides, I didn't trust mammograms or ultrasound, lobular carcinomas can be difficult to detect by mammography. The PM reduces the risk of contralateral disease by approximately 90 percent, it does not, however, eradicate the risk completely. I declined further checkups. It was the month when I learned that my twin was suffering from a serious depression.

In march 1999 my twin brother committed suicide. I was in the middle of the reconstruction and suddenly my life was turned upside down. It was the worst spring I have ever had in my life. My other half was gone.

I had strange and extremely uncomfortable symptoms - digestive and musculosceletal, I had a distinct feeling that they were all connected. My GP didn't believe me, he thought I was highly strung.

End of story?
I thought that was the end of story, unfortunately, it was not. In 2003 my husband and I moved to France, leaving our life in Norway behind. We moved to a 250 year old stone house in a little french village, surrounded by corn fields, vinyards and sunflowers. Life was good.
I woke up in the morning of January the 15th 2005 and the right side of my chest felt funny. The saline implant had ruptured. I was in a foreign country, I didn't speak the language very well and I had to call a doctor and explain what had happened - in french. I really felt as if I was having a bad hair day.

Dr. Pasteur was a gentle and competent surgeon and gave me the options; either remove the implant or replace it. Replacing it was out of the question, I did not want to risk future surgery. I was admitted to Clinique Montréal in Carcassonne on the 27th of January and the implant was removed on the following day. The surgery went well, but as was the case after my second mastectomy, I got abdominal problems after the hospitalization, not as severe as the last time when I had to be hospitalized, but extremely uncomfortable because of the intense pain, constipation and diarrhea. My guess is that it was the revenge of my intestines to all the medication given to me in hospital.

The french hospital staff was very surprised by the fact that I had had bilateral mastectomy, it is rarely done in France. I had to explain to them several times - they constantly asked me for mammograms - listen guys, I don't have any breasts left!

If I had known that the saline implant would last only 6 years, would I still have chosen a reconstruction? I have read a considerable number of articles about saline and silicone implants and so should other women before they make their decision.

And then? I looked at the bright side, I could choose the size and shape of my breasts each time I go out to get a new pair of protheses. A less charming side of it is that the procedure doesn't come cheap in France since it's only partly covered by social security. And the prices of their special bras are astronomic.

"Le voyage" had been long and I hoped to have seen the end of it. The last surgery, caused by the ruptured implant, took something out of me, I felt deceived in a way, deceived and vulnerable. Suddenly things became .... too much. But as my good friend Fern said to me once .... THIS TOO SHALL PASS.

The story continues
5 months after the surgery - in June 2005 - the doctor ordered an ultrasound to find out what was wrong with my stomach and intestines. After having had excrutiating pains for months, increasing fatigue and a nasty rash, I was desperate. The pain was so bad that I couldn't sleep at night. The doctor thought I had an ulcer.

I had started a glutenfree diet to find out if gluten allergy was the problem. It wasn't. One day I noticed that my eyes and skin had turned yellow. My friend Madou immediately sent me to the doctor who in return sent me to a radiologist.

Ultrasound
The pain was so bad when I went to the clinic that I had trouble walking. I had lost some weight and felt pretty awful. The radiologist inquired about my breastcancer, I wondered about that. Finally he said: I want you to go and see your GP immediately, your liver is damaged. I do drink my fair share of wine but bloody hell, I'm not THAT bad. I just didn't get it. Not until my GP rather shifty eyed suggested that the radiologist thought the whole thing was connected with the breast cancer.

The ultrasound showed that my liver was enlarged and had multiple nodules on it and my liver values had skyrocketed according to the blood tests. I realized that something was pretty serious when the radiologist called my GP before I reached home, a 15 minute drive. Advanced breast cancer - metastases to the liver. No wonder I was completely knackered and in pain. And my GP finally understood that it was definetely NOT an ulcer.

It was a bizarre week. One day I had my dog spayed, three days later I found her dead under the stairs. On the following morning I got the stage IV diagnosis.

Here in France the medical care is excellent. After my diagnosis things started happening at great speed, blood tests, ultrasound, CT-scan and bone scintigraphy. The nurse came to my house for blood tests and I got free transportation to the hospital for my chemo sessions.

The CT scan showed multiple nodules on my liver, suspicious areas on my right lung and peritoneum. The bone scintigraphy showed that I had extensive metastases to my bones. After my 7th chemo I got blod clots in my right foot, it became swollen and extremely painful.

How did I feel about all of this? I don't know, it was difficult to take it all in I suppose. My oncologist was reluctant to answer my questions. He didn't understand that I wanted to know everything, he though that he was protecting me by keeping the cards close to his chest. Statistically, my odds are not good, he knew and I knew. But Dr. Mathieu didn't want to talk about statistics.
I'm not sure if a person is capable of understanding that death is closer than before, at least I don't think I am. I went about my business as usual and everyday life didn't change much apart from the fact that I allowed myself more rest. They gave me morphine for the pain and I slept for 18 hours.

I knew that the chemo would lead to hair loss, what I didn't know was that my eyebrows and eyelashes would go aswell. Mind you, my body was fighting against the hair loss, it grew back out in places. My bald head didn't bother me, but in rural France I normally wore a scarf when I went out, some people became extremely embarassed when they saw a woman with no hair. I bought a wig which I truly hated.

After almost four months of chemo, the results of the blood tests showed that my liver functions had improved and the latest scan showed a slight improvement. Weekly 150 mg of Taxol and 120 mg of Herceptin + 500 mg of Paraplatin every third weeks seemed to work. But the side effects of the chemo were becoming more and more severe, especially the muscle and bone pain and the feeling of walking on a thousand needles. I didn't realize that it would be so painful. No sleep and totally dependent on painkillers.
I got a second opinion from another cancer specialist who questioned the use of Herceptin since my second FISH test turned out negative. He also said that it was important to economize on the use of chemo.

In 1997 they more or less indicated that it was nothing, no lymph node involvement, hormone positive, HER2 negative. I had a feeling that for them it was a boring case, no risk, nothing special, YAWN. That is why I said no to Tamoxifen and further checkups. They said "fine, fine", just go on with your life.
In the following years my GP didn't believe me when I insisted that my strange symptoms were all connected. They seemed to move from place to place, but the sum of discomfort was always the same. I knew that something was very very wrong but I didn't succeed in making anybody else believe me. And after a while I somehow knew that it was too late anyway.

The new scan showed considerable improvement especially in my liver. There were still some lesions left but they had gotten much smaller. The radiologist was very happy. I was relieved in a way, calm and more at ease. But it was as if everything was happening to somebody else, not me, I couldn't really feel anything the way I used to. Just white silence. The bone metastases were the same, the chemo had apparently had no effect.

The break from chemo did me good. I started thinking that life was worth living again, until my onc put me on Arimidex. The side effects of the chemo were a piece of cake compared to those of Arimidex. The nausea, the bone pain and the fatigue gave me horrible symptoms. The painkillers didn't take the edge off. So I thought good and hard and I thought, I can't do this. I stopped taking Arimidex, I tolerate pain reasonably well, but this was just too much. It was a calculated risk, maybe the drug would give me more time, but time for what !? lying in bed?

I did thorough investigation on the Internet. Even without the Arimidex the bone pain was intense and with this drug the pain was multiplied with 10.
I found out that there were a lot of women suffering from severe side effects of the drug. Apparantly it is due to the body being deprived of estrogen. And the symptoms of a chemo-induced menopause are according to certain studies worse than those of a natural one.

My good friend Madou called the hospital, she knew that I needed help. The oncologist put me on Aromasin and the "pain-doctor" set up a plan for pain relief. I got an appointment with a psychologist. Time to talk without filter I thought.

The Aromasin had marginally fewer side effects than Arimidex. I went to see the psychologist. She got it. She understood that I needed to know the facts here, prognosis, choices, a good life - or a lousy but longer one? The Aromasin made me feel awful. I couldn't drive because of the dizziness, I could hardly do the housework, the artwork was difficult because my hands were shaking. But since I have always prided myself in being a "good patient" I continued taking it.

My dear friend Carol Corke in Texas wrote this beautiful poem to me. She has allowed me to put it on my site.

Kirsti’s Gift

Like brittle leaves in autumn’s passing, 
Her soft yellow hair has fallen away.
Reservoir-damned, the tears well unshed;
Cresting waves washed against anger’s shores.

The Why’s have taken wing
Wending where they will;
Alighting in a doctor’s mirror,
Quiet conscience shouting without words.

Her bones peer at her on luminous sheets,
Rattle within shaking the finger of time;
Her yearning heart aches with the weight
Of all that’s left undone.

Patient, pain stalks her tender core,
Pokes and prods preventing sleep,
Protesting in wakefulness as well;
A creeping miasma of betrayal.

Her gentle spirit wrestles this demon,
Breaking chains of illness
With the colors of her soul.
She paints a path to Paradise.

Illumined, Transcendent, Pure.

I live in a small french village. 180 inhabitants, life is simple here, people don't have great demands and neither do I. If I have a good day when I can paint or do my callgraphy I am content.

I continued taking the Aromatase inhibitors and the oncologist was beside himself with joy. The side effects did ease off a little, but my quality of life was still considerably reduced. He suggested blood tests every 2 months and go on with life.

The headaches became more and more frequent but the oncologist had said that the headaches and the musculosceletal pain had nothing to do with the cancer. I knew that he was wrong. Finally the pain became so bad that I couldn't stand up. I called the pain specialist who immediately ordered X-rays, CT scan and MRI. The X-rays and CT showed a lesion near C3 which indicated that something was pressing on the nerves, radiation would be the best painkiller.

The excruciating pain made me afraid. I imagined worst case at once. What I dreaded the most was metastases to the brain. Morphine didn't help, neither did cortisone, I couldn't take anti-inflammatory meds because of the blood thinners. But the MRI's of the inside of my head turned out fine.

I began radiation on the 23 of February, although the neurologist told me that the headaches were migraines. They put me on beta-blockers and antidepressants. I was hospitalized for 4 days. I became uneasy because nobody seemed to agree on anything that is why I ordered a second opinion from a professor in Toulouse. The second opionion turned out pretty wishy-washy. I didn't find out more than I already knew, average survival 24 months, the cancer is still there. He was highly surprised that I had been given Herceptin since I was HER-2 negative in the latest FISH test.

In March 2006 I was actually able to hug one of my cyber-friends - Susan from Boston. She was in France on holiday and Susan and her charming husband Lesley came to our house for lunch. We connected instantly, it was a magic moment.

The hair came back in a menopausal sort of way. The eyebrows started to grow thin after I started taking the Aromatase inhibitors, a fact that annoyed me after all those months on chemo and a bleak face. But the real fun started when I tried dying my hair, I have been a fake blonde for years but thought I'd try being a brunette so I chose golden Chestnut.

In mid March I had new blood tests, I noticed that the tumour marker values had gone up. A month later, I had ordered and paid for my tickets to go to Norway and visit my parents, I was hospitalized with a pleuricy the day before my departure. Naturally, the voyage was cancelled. It was extremely disappointing for me and my family.

I try not to be bitter, nothing good will come out of bitterness. I can't help thinking though, that at the age of 34 the lump was already palpable, even though the ultrasound and mammogram didn't show abnormalities. But if they had done a fine needle biopsy back then, I wouldn't have walked around with a progressing cancer for 4 years before it was finally - and quite accidentally - diagnosed. It had time to spread during those 4 years and it did. And if my GP had believed me, the metastases would have been discovered earlier, and I would not have felt that my symptoms were my own bloody fault. I remember telling him: all of this is connected! He didn't believe me. I thought that there was something wrong with ME!

It was a shock to realize that my life would never be the same as it was. The monster coctail of chemo changed a lot of things, both physically and emotionally. Physically I felt like an old woman and the aromatase inhibitors weren't exactly helping. 10 months after the last chemo my feet were still killing me, intense pain in my toenails, sometimes I couldn't wear shoes and the tingling/numbness was just as bad as before. My hands were stiff and painful in the morning, making drawing and painting difficult, not to mention trying to fasten my bra in the morning. When I did housework or gardening I got the feeling of having a thousand needles against the palms of my hands.
I ate less and continuously gained weight, side effects from the chemo or the Aromasin. Night sweats, hot flushes, thinning hair, thinning eyebrows, thinning eye lashes, mood swings, puffy face, emotionally, I was on a roller coaster, the panic attacks made my life difficult, I had many nights awake in front of the television with the lights on. There was a sadness coming from deep inside, it consumed me, it was like staring at a dark grey wall.

In the middle of June 2006, bloodtests and a new scan showed that the tumour markers continued to go up, they found "something" on my thyroid gland, micro nodules on the lungs, the lesions on the liver and in bile ducts were stable, some liquid accumulating in the peritoneum but no visible lesions.

So I went to see my onc., I guess we understood each other, we both knew I would need more chemo sooner or later, the big question was deciding when. He proposed a PET-scan to get an indication of what was happening in my body. This time he gave me a compliment, he said, it's is refreshing to see you Madame, you people from the nordic countries are much more realistic, honest and direct than us living in the Mediterranean. You don't waste any time trying to cloud things.

I had discovered 3 nodules on my chestwall on the opposite side of the original cancer and I showed them to my radiologist. He didn't like it at all, he said, these will have to come out at once. A week later I had surgery to remove them, the surgeon said, "it might be scar tissue". I knew it wasn't scar tissue. The pathology report showed that the nodules were indeed cancerous, the same type of cancer that I had initially, multicentric, invasive lobular carcinoma with Indian file pattern of cells.

The PET-scan images showed that the bone metastases were progressing. The oncologist chose to begin a chemoregimen of Taxol, Gemzar and of course the beloved Zometa to strengthen my bones. The blood tests showed that the tumour markers continued to rise. I knew I would have to have more chemo sooner or later but I had hoped for more time without poison having a go at my body - again.

I had two chemo sessions with Taxol and Gemzar and then the hospital called, the bloodtests showed that my immune defense was down to a minimum and I had to take a break. Now bloody what!

In doctor's offices and hospitals I am always calm and composed. Sensible questions, no panick, not a flicker of emotions across my face, But when the night settles the panick attacks and the tears come flooding in big waves. I wake up with a puffy face and a heavy heart. A quick shower takes care of that and "je peux repartir". Mostly, life goes on like normal, it's not like cancer rules my life.

Oh well, it does have some impact. One morning I came out of the shower and started styling my hair, suddenly I stood there with a chunk of hair between my fingers. Oh no - not again - I had just had a hair cut and felt good about myself for a few days. But the Taxol had won again, 1 to 0 in the premier cancer league.

My bloodcounts went up again and I could pick up where I left. But in spite of the chemo the tumour markers continued to go up, why? The CA 15-3 came to an all time high, the gamma started budging. The uncertainty of this disease sometimes gets the better of you. Am I descending?

The chemo didn't bring the tumour markers down much, the oncologist's comment was that the disease was stable, whatever that means. At the same time good things were happening in my life, I took part in an exhibition in my home town which went quite well, and one of my paintings ended up on the cover of an anthology of breast cancer literature in the US.

The bone scintigraphy in November showed that the metastases in the bones were progressing, the chemo had apparently no effect. However, the lesions in the liver and the lungs had shrunk. So I opened the champagne and celebrated the latest news - until I got the blood test results. The tumour markers were at an all time high.

When my bladder stopped functioning normally I didn't quite know what to do plus I had fluid accumulating in my abdomen and liver (ascites) and I looked like I was 6 months pregnant. The cancer cells in my peritoneum were creating an inflammation. The oncologist refused to drain the fluid, he put me on cortisone and diuretics. It didn't work. I was walking around with 3-4 extra kilos in my abdomen, eating became difficult, the acid reflux and the abdominal pain came after every meal, and of course - there was little room for food.
One of the specialists said that the only thing that could help me now was more chemo. It is frightening when your body functions stop working properly, my kidneys and liver weren't doing what they are supposed to do.

On the night of Christmas day the ambulance took me to hospital, I vomited blod. Apparently I had an ulcer, the blodthinner dose was way too high and I had a hiatale hernia. I stayed in hospital for three days, I was given nothing but liquid, soup, yoghurt and fruit compot, yuk. I started my 3rd round of chemo - Caelyx and Carboplatin this time. Finally they drained some fluid from my abdomen when the discomfort became unbearable.

Something had changed, the symptoms were more severe, the abdominal pain was at times really bad, I had morphine patches and additional pills, I took as many as I was allowed, nothing helped.
After the drainage of the abdominal fluid things got a lot worse, why I can't for the life of me understand. The entire abdomen seemed to be on fire, swollen, infected and painful. After massive doses of morphine, cortisone and antibiotics things seemed to become somewhat better.

It is frightening when I start feeling the cancer. The cancerous cells create inflammations and suddenly I notice that it's there - cells multiplying and doing damage. They found "Staphylococcus aureus" and "Propionibacterium acnes" bacteria in the fluid drained from the ascite. I guess these cells can be nasty when not kept at bay by the good bacteria that seem to have vanished.

The blood tests showed that the tumor markers continued to rise. The CA-15.3 was at 286 and the CEA at 60 (nearly tripled in a month). Tired, just tired.

In and out of hospital, the port became infected and had to be removed, the cancer in my abdomen gave me lots of problems, the doctors stopped the chemo, I stayed 4 weeks in hospital. My time is limited now, there is nothing to stop the cancer progressing and I feel my condition deteriorate rapidily.

Invasive Lobular Carcinoma - Metastatic breast cancer - A personal story

E-mail: mail@kirstio.com