Kidney Cancer - the silent killer. The beginning

Health is a gift; it is not a given.

A year ago I was diagnosed with renal cell carcinoma, the most common and most deadly of kidney cancers.

The journey to that horrifying diagnosis had taken 15 months. . I had assumed that the intermittent vaginal bleeding, joint and soft tissue pain, slight nausea in the mornings and tiredness were all symptoms of a late menopause. It was not until the end of July 2008 that I was finally made to take notice that something was seriously wrong with my body. The thought that it might be cancer had never entered into my mind until that night.

My mother had just suffered a stroke and was home beginning what was to be a full recovery. I was spending the night at her house to keep an eye on her when I woke in the middle of the night soaked to the skin with sweat. My body ached all over and worst of all was the relentless pain in my lower back, as though someone was trying to drill a hole in the base of my spine. When I went to the toilet, I discovered that I was bleeding.

I used a combination of breathing techniques, Reiki and EFT (emotional freedom therapy) to bring the pain and the fear under control, changed my bedding and night dress, and slipped back into sleep. The following morning I made an appointment with my doctor.  

A cervical smear showed that there was nothing wrong with my cervix; blood tests indicated anaemia and raised inflammatory markers; tests for ovarian cancer were also negative. I was referred to a gynaecologist and endured two biopsies of the lining of my womb; the first did not have enough tissue and they lost the results of my second for almost six weeks before they finally showed up again. I was referred for ultrasound to check for any gynaecological abnormalities and other than a slight thickening in the womb lining, nothing was wrong.

Had I known then what I now know about kidney cancer, I would have asked for them to scan my kidneys too. That would have shown the problem immediately. However, once more assumptions created delay in dealing with the real cause of my symptoms. Not once was it suggested that my kidney might have been responsible for the bleed. They had ruled out menopausal periods as the source as blood tests showed my hormonal levels to be that of a post-menopausal woman. I had been through the change of life without even noticing it. The bleeding was considered to be the effects of a hormonal imbalance, nothing to be worried about.

The gynaecologist was very kind but having ruled out all of the problems under her specialisation, sent me away with her contact details and the promise to see me if I continued to bleed. I was so relieved to know that I did not have any of the gynaecological cancers that I did not even ask if there might be any other cause. It had taken from August to late January to reach this point in the journey.

I will continue with the next stage tomorrow but I want to raise the following red flags which might just save your life or the life of someone you love.

Never ignore bleeding however slight.

Never assume that anaemia is benign. Too many woman accept it as part of being female and due to losing blood every month.

If you start to bleed again after cessation of periods, even if it has been less than the usual year we use as a sign that menopause is over, do not assume that it is gynaecological.

Insist that all possible causes are ruled out.

If your inflammatory markers are high (CRP and ESR), do not allow any delay in investigation of the causes, particularly if you have other symptoms. If they rule out one set of causes such as gynaecological, ask what needs to be looked at next.

Do not expect your general practitioner to refer you on automatically to another specialist.

Do not expect your general practitioner to call you back in to discuss what else might be explored to explain your symptoms. You need to be the one who makes sure this happens.

Ask for your kidney function to be tested.

If you have high blood pressure, also ask for your kidney function to be tested. The three medications I required for high blood pressure prior to my operation are now no longer required.

Be prepared to be a persistent but polite pest if there is a delay in getting consultant appointment, tests etc. If your records go missing, create merry hell until they are found.

Without being paranoid, we must all be our own experts about our bodies. There is an abundance of helpful information on the internet. Use it.

Do not rest until you have your answer. Your life depends on it.

Waiting

In my January 1st post, I mentioned that I was waiting for the results of a biopsy. Well, I am still waiting, going about my daily life in my usual way, but with that frisson of something different, a ripple of disturbance in my usual calm, a background hum of dissonance.



My story is one common to many women and in other bodily areas to many men. Our bodies are running rogue programmes which we did not notice had slipped through our system's protective software. In my case, it started with an increase in the irregular menstrual bleeding which has continued all the way through peri-menopause and well into what should be menopause itself. The longest I have gone without any meaningful bleeding is 8 months. We have a history of late menopause in the family as my aunts were all in their mid to late fifties when they finally ceased bleeding, so I thought nothing of it.



Well that is not quite true. I smiled quietly to myself and thought that I was simply aging slowly. We are a youthful family with good skin that remains unwrinkled into our seventies, lots of energy and a good genetic track record. My mother is 80 and my father 86. With one exception my mother's siblings lived into their eighties and one who still teaches every day will be 90 next June. On Dad's side, his two aunts were in their 90s and working in the fields of their farm until near the end. We are generally a long lived and healthy breed. So I guess I was in a place of ignorant complacency about my health. Then there is the small matter of a life time of obesity; we all know the dangers in theory but right now they are very real.



When my mother had a stroke in June, the bleeding became heavier and very frequent, nothing alarming, just more in quantity and more often. I was also waking up in pain, feeling as though someone was boring a hole in my lower spine. Then there were the aches and pains in all my joints and a general weariness that alarmed me. Then again, Mum's stroke had been a terrible shock to all of us and I was living at the hospital during the day and spending every night with my father at home, listening for him falling over when he lost his balance. Stress plays havoc with all the body systems so I tried to ignore the symptoms and told myself that it would all settle down when Mum was out of hospital. It didn't. It got worse.



I am not the type to panic but I thought it was time to visit my doctor. First I arrange for a smear test just to rule out problems with my cervix. I thought it might have been a recurrence of a polyp which I had been treated for many years ago. Everything looked good during the examination and the results showed healthy cells. Polyp ruled out - cervical cancer ruled out. Breathe deeply and sigh with relief.



However, my blood test taken at the same time showed high levels of inflammation somewhere in my body, It's not a result doctors like to see as it can be anything from an infected tooth to arthritis, a sinus infection to cancer. I have plantar fasciitis in my left foot which I chose to believe accounted for this but my doctor very sensibly decided it needed further investigation and referred me for a scan of my ovaries and womb. The wheels of the NHS ground exceeding slow but eventually my appointment arrived just after my doctor gave me the results of my latest blood tests. Bad news: inflammatory levels even higher. Good news: the test for ovarian cancer markers were negative. Huge sigh of relief because it had crossed my mind that my symptoms might indicate this.

Up to the hospital for the scan - dozens of women waiting, bladders bursting from the litres of water we had to consume to ensure a good scan. One poor woman was absolutely frantic. We waited for almost an hour before someone told us that they were down a radiographer and they were waiting for a consultant to finish rounds to come down to help.I offered up a silent prayer that I would get the consultant because that would mean he would give me the results straight away. As they sent other women down to various radiographers, they called my name and two others to another part of the department. Then the consultant arrived and my prayer was answered. He was amazing. He described everything he saw. Ovaries - all normal, no cause for concern. Womb looked good. Endometrium showing some thickening. Where was I in my cycle? "Havn't a clue." So apart from that he said that everything looked good and we had a short conversation about our sons who had both started university this year.

So here I am, six months down the line, one cervical smear, one pelvic scan and two endometrial biopsies later (the first one was clear but with insufficient tissue) still waiting. The likelihood is that it is a hormonal imbalance brought on by a combination of stress and too much oestrogen in my system produced by all these happy little fat cells. A course of progesterone should restore the balance and stop the carcinogenic influence of the excess oestrogen. Fingers and toes are crossed. Hopefully my results will be in early next week and I can start on the progesterone.

So that is the saga so far with much of the emotional roller coaster omitted. Ladies, do not ignore the symptoms I blithely took to be perfectly normal. If a shadow of a doubt crosses your mind about pains or bleeding, see your physician. Life is precious. Don't throw it away. The same is true of any other physical symptom which is out of the ordinary. Let your doctor judge if it is significant. Gentlemen, if any of you are reading, don't let embarassment kill you if you have prostate or bowel problems.

I am not afraid of death. I am just not yet prepared for the dying bit. Come back and see me when I am in my 90s and then I will reconsider.