This is a summary of my medical history relating to rcc to date. I’ve compiled it as I thought it may provide a useful benchmark to others undergoing treatment.
May 2009 - I feel ill while on holiday in Turkey and am diagnosed with pneumonia. This recurs about a month later and I increasingly feel exhausted.
July 2009 - I experience a large volume of blood in my urine. GP diagnoses an infection and prescribes antibiotics but subsequently calls me to say no infection had been detected from my blood tests and further tests will be scheduled
August 2009 - a cystoscopy is clear but a subsequent ultrasound results in a call from my GP at 8am the following morning asking me to come straight into the practice to discuss the results. Gulp! My partner Robin attends with me and my GP informs us they have found a “pretty nasty lump” in my right kidney and I will probably need a radical nephrectomy (removal of the tumour and kidney). I acknowledge that I have had a nagging pain in my side which I have been ignoring. I enthusiastically take up the doc’s suggestion of a Tramadol prescription!
September 2009 - CT scan, then appointment with urology consultant who tells us the scan has revealed a very large tumour, which is almost certainly malignant (i.e., kidney cancer) and while he will attempt laparoscopic (keyhole) surgery he might have to convert to open surgery mid-op. He estimates the tumour is 11-12 cm and suggests I may have had it for about 12 years as they tend to grow at the rate of about 1 cm per annum.
28 September 2009 - 6 hour operation – consultant pops into my room afterwards to say it was difficult, my bowel was nicked and a lymph node removed, but he is confident the cancer was resected. He has performed laparoscopic surgery– I have five scars, the largest at my abdomen is 13cm. Not quite as ‘keyhole’ as I had anticipated.
September – November 2009 – in hospital for six days and off work for about 8 weeks. I had hoped to get back to work sooner but had recurrent lung infections so was doped with antibiotics most of the time. Throughout the initial 8 week recovery I am gradually weaned off Tramadol (boo hoo!).
11 Nov 2009 - appointment with the registrar. We FINALLY find out the results of the op. The tumour was a papillary cancer, Grade 4 (sharp intake of breath) but I am assured the cancer is resected and I can get back to normal life. As it’s a Grade 4 tumour they will “keep a close eye on me” which means regular 3 month appointments with the consultant. I foolishly assume this will also mean regular CT scans (Hah!).
Nov 2009 – Feb 2010 - I’m living relatively normally but am tired most of the time. For some weeks my blood tests are apparently a cause for concern (?) but then normalise. During this time my GP gives me a print out of a letter she received from the consultant and it mentions I had been Stage 3b – I feel confused/slightly freaked as I had assumed I had been Stage 2.
Feb 2010 – Follow up appointment with consultant. Neither the consultant nor the registrar are available. We wait hours then see someone who is parachuted in to take the clinic. When I ask him to clarify what stage of cancer I had/have he is irked ”Do you have a medical background?” he barks then impatiently pulls up the American kidney cancer association webpage on Stage 3 and points to it on his PC screen. “That’s what you have,” he tells me. Charming.
Feb 2010 – May 2010 – Still not feeling great. Move house (from the city to the beach, hurrah!) and have to change medical practice which is a blow.
20 May 2010- Follow up with original consultant who performed op. “How are you?” he asks. “Fine,” I gush to Robin’s horror. “You look fine to me,” he agrees. (Incidentally ‘fine’ in ‘mycancerworld’ is code for ‘fat’ which means you’re not being eaten to the bones by a marauding cancer which is good!) He proposes a follow up scan in October and I have blood tests.
June 2010- I receive a letter scheduling a scan for 16th July which worries me as there is no explanation for why the date is being brought forward. I contact the consultant’s PA to try to find out the results of the 20th May blood tests but get nowhere. I’m feeling increasingly unwell and agree with Robin that I should have told the consultant about a pain in my right side. I go to the new surgery in Portobello and a GP says we should wait for the scan results. Under pressure from me she finds the results from the blood tests taken at the hospital in May and seems concerned about them but concedes she is unsure what they mean. She suggests further blood tests. The next one shows my liver function is impaired. The one after than shows it is normal…
16 July 2010 – CT scan. The radiologist asks me how I have been feeling. I mention the GP told me it could take up to 5 weeks to get the results from the scan but she assures me it will be quicker than that and that my consultant will be looking at them that afternoon. This makes me anxious. I seek out the Maggie’s Centre for the first time and they assure me they will help get some clarity on when I might get the result but then call me later at work to concede defeat. The urology department’s ‘defences’ have proved impenetrable.
July 2010 – I get an appointment with the consultant for 16th Sept (the date we are flying out to Lisbon for a two week holiday in Estoril, which we had told the hospital about). I rearrange for 7th October. Robin reckons the fact that it’s not till then proves there was nothing problematic in the scan. I’m not so sure. I call the appointment office and they clarify it was a routine appointment, made before the consultant saw the scan results. Over the following weeks my repeated attempts to get info on when I might get the results of the scan prove futile. The consultant’s PA is a wall of silence.
I am now having trouble sleeping due to the pain in my right side. Within a few weeks I can hardly sleep at all and am very ratty. I revisit the medical centre, see another GP who repeats I need to wait for the results of the scan and should take ibuprofen in the meantime.
06 August 2010 – I call the practice to ask if they can try to get some info on the scan results, they arrange for a telephone appointment with a GP at the end of the day. A GP (the fourth I have dealt with this at this practice within a few weeks) calls and says the consultant does need to speak to me urgently about the results and his PA will call me to get me into the clinic the following week. I express cynicism about this and am assured the urology department has asked for my mobile number.
09 August 2010 – end of the working day and surprise, surprise I haven’t heard anything about this ‘urgent’ appointment. I have a busy schedule at work and feel frustrated at the lack of info on appointment date. I call the consultant’s PA. She assures me I have no appointment pending other than one on 16th Sept (which has already been changed). Just before I ring off she spots an appointment on 26th August.
13 August 2010 – I meet yet another GP at the medical practice. I hadn’t slept at all the night before and am looking for something for the pain. She is sympathetic about my frustration and promises to find out what is going on. I tell her if the cancer has returned I would like to be prepared. She calls back a few hours later. She has spoken to the consultant. I was supposed to see him in the clinic the day before (no one told me! When I got back from the surgery there was a letter from the hospital confirming an appointment for 26th August). The consultant will come in early the following week to see me. She tells me the news is not good and to make sure I take someone with me.
Double gulp. We have always known that when kidney cancer reaches Stage 4 it is considered incurable. It can’t be treated with chemo. Papillary cancer is apparently resistant to the new biological therapies. The new ‘miracle’ drugs which provide an option for remission are not available on the NHS. This is a big headfuck.
19 August 2010– the consultant confirms metastasis. We discover the resected tumour was actually 19cm x 16cm. We get the impression it was hideous and frightened all who had seen it! The consultant suggests I take some paracetomal for the pain. The pain is apparently not from the tumours and he suspects it may be from my ribs, saying the cancer might have become “bony”. This could mean secondary bone cancer. Ugh. More info in ‘Medical blog’.
20 August 2010 -the drugs don’t work! Paracetomal is proving pointless. Another GP (how many GPs does this practice have???) prescribes Co-Codomal and I get my first night’s sleep in about a week.
31 August 2010 – first meeting with oncologists (Christy, the registrar, and Duncan, the consultant) at the Edinburgh Cancer Centre at the Western General. My treatment options are limited and my best chance is to try to get on a current medical trial in Manchester for everolimus (brand name ‘Afinitor’). More info in Medical Blog
07 September 2010 – I have a bone scane at the Western General. It is a lot less hassle than anticipated. I see Christy, the oncology registrar, again as I’m concerned I might have a chest infection. A chest X-ray is clear but she prescribes precuationary antibiotics. More info in Medical Blog.
10 September 2010 – back to the Western General for a CT scan of my head.
13 September 2010 – Appointment at the Gastroenterology dept at the Western General. They reckon there is no point in them getting involved – ironically the constipative powers of the painkillers I am taking have counteracted the bowel problems (constant diarhhea) I had been having and no bowel obstruction had shown up on the CT scan.
14 September 2010 – Appointment with oncologist at HEBA clinic. The CT head scan and the bone scan showed no spread of cancer to skull or bones, although the bone scan has revealed I have arthiritis in both feet. Agreement that I will continue with codeine-based pain meds and am well enough to go on holiday. More info in Medical Blog.
06 October 2010 – My first meeting with Professor Robert Hawkins at The Christie, a specialist cancer treatment hospital in Manchester, to discuss the possibility of enrolling on the everolimus clinical trial for papillary rcc patients. In theory I can but I have to pass a series of tests first (e.g., I need to have good lung function). More info in Medical Blog.
12 0ctober 2010 – brief meeting with oncologist at Western General in Edinburgh. She is arranging a referral for a Macmillan nurse to contact me.
14 October 2010 – travelled to Manchester for a quick meeting with Professor Hawkins and signed the consent form for the clincial trial. Will now have to await appointments for the various tests. More info in Medical Blog.
25 October 2010 – Spend just over an hour completing a series of pulmonary (lung) function tests at the Western General. The results will be sent to Manchester.
28 October 2010 – A full day of screening tests undertaken at The Christie in Manchester; CT scan; bone scan; ECG; chest X-ray; physical exam; blood and urine tests. If the lung function test results are acceptable I will begin treatment the following week. More info in Medical Blog.
01 November 2010 – Flu vaccination at Portobello Medical Centre. A home visit from the Macmillan nurse at St Columba’s Hospice – she contacts my medical practice and arranges easier access for making GP appointments for me.
02 November 2010 - Pneumonia vaccination.
04 November 2010 – We travel to The Christie – the results from the tests show the tumours have grown slightly, one is now approx 3cm. The good news is they have agreed I can join the trial and I begin taking everolimus/ Afinitor (two 5mg tablets each day) immediately. I take my first two tablets. More info in Medical Blog
05 November 2010 I see my local GP and discuss my exhaustion and am signed off work. I end up being off work until mid-December.
09 November 2010 – Appt with the oncologists at the HEBA Clinic at the Western General. They reckon now that I am under the care of Professor Hawkins there is no need to see them regularly but give me contact numbers in case I require emergency admission to the oncology ward.
16 November 2010 – We get a car to make the travelling to Manchester – and the various medical appointments – easier.
18 November 2010 – Fortnightly appointment with Professor Hawkins – I report my side effects which have mainly been stomatitis, which I have treated with non-alcoholic mouthwash and rinses of diluted bicarbonate of soda, and a mild ear infection which has been treated with an antibiotic ear spray.
20 November 2010 – Appointment with GP, I have a pretty awful skin rash and am prescribed Daktakort, a steroid cream.
23 November 2010 – I begin seeing a counsellor for one-to-one sessions at the Maggie’s Centre at the Western General in Edinburgh. I have to stop wearing deoderant and make up. I drop in at the HEBA Clinic while at the hosptial and see Christie, the oncologist, as I have a rather alarming swollen finger. She prescribes antibiotics for the infection. Christie is about to transfer to a Glasgow hospital. This saddens me – although I am not seeing her regularly I’ve felt reassured to know she is on hand as she has been the most helpful medic I have encountered.
02 December 2010 – The regular fortnightly appointment at Manchester has had to be postponed – blizzards across the country have made travel impossible. See Medical Blog.
06 December 2010 – Appointment with the counsellor at Maggie’s Centre
13 December 2010 – Rescheduled appt with Professor Hawkins at The Christie in Manchester to pick up my next prescription of everolimus /Afinitor (I receive 40 days worth each time). They agree that I don’t have to come back on Thurs 16th, my normal scheduled appt. The drug is raising my cholestoral levels, a common side effect. so I have to start taking a daily statin.
15 December 2010 – Back to work full time!
22 December 2010 – Appt with the Counsellor at Maggie’s Centre
23 December 2010 – Appt with GP. I have increasing pain levels and he suggests a change of medication from Co-codamol and Ibuprfoen to Tramadol and Ibuprofen with liquid morphine on hand if required. More in Medical Blog.
30 December 2010 – CT scan at The Christie in Manchester then Professor Hawkins reveals the preliminary results – it looks like the drug is working as the tumours are stable with no new growth! More in Medical Blog
10 January 2011 - Appt with GP. I’ve had a chesty cough so start taking a precautionary week of antibiotics (Amoxicillin). I start to experience strong nasuea and have some vomitting episodes.
13 January 2011 – Regular appointment at The Christie. They are concerned about the impact of the various side effects and ask if I need to take a break from the trial but I don’t want to. The side effects are worth putting up with if it stops the cancer spreading. After discussions about my debilitating levels of pain they change my meds to morphine – slow release pills in the morning and evening topped up with liquid morphine as required. The Professor says he intends to ask the surgeons at The Christie if they will consider operating to remove the tumours. More in Medical Blog.
20 January 2011 – A research nurse from The Christie calls to let me know that the surgeons have agreed to operate. I’ll find out more during my next appointment in Manchester.
27 January 2011 – During my regular appointment at The Christie Professor Hawkins points out that if I have an operation I will probably stop taking everolimus and come off the trial. More info
02 February 2011 – We meet a consultant surgeon, Mr Vijar K Sangar at The Christie. He will perform a rib resection in April – removing my 12th rib and the two tumours. More info
16 February 2011 -Visit to The Christie for a quick appointment with Professor Hawkins followed by a CT scan. Now I have been on the trial for over three months my appointments will now become monthly instead of fortnightly so we have been able to schedule a two week holiday (well, a honeymoon actually, see Cancer Bride for more info!). Our next visit will be March 24th.
24 February 2011 – Professsor Hawkins calls to let me know that the scan results have not been good. There is a little growth in one tumour and quite a lot of growth in the other. More frustratingly it looks like a number of lymph nodes have now been affected by the cancer and are inflamed. This could affect the possibility of an operation. He will discuss this with the surgeons next week and we will find out more on our next apppointment.
25 February 2011 – A pre-wedding visit to the chiropodist reveals I have an infected big toe. I manage to schedule an appointment with Dr Ferguson the day before the wedding and pick up some antibiotics to take on honeymoon.
16 March 2011 – Post honeymoon the toe still looks gruesome. I see Dr Ferguson who prescribes more antibiotics and recommends a referral to the Podiatrist at Mountcastle Health Clinic as he thinks the nail might have to be surgically removed.
17 March 2011 – The podiatrist is reluctant to remove the nail due to the blood clotting implications of everolimus. He sterlises it, covers it in a dressing and gives me a week’s worth to take home and recommends steeping it in salt water solution.
24 March 2011 -Professor Hawkins shows us the last scan, reassures us that although there was some growth of the tumours it wasn’t enough to bar me from the RAPTOR trial so I can continue taking the everolimus. He explains that the enlarged lymph nodes could be ambigious – i.e., they could be enlarged if they were fighting infection. He is a little concerned about the infected toe and reckons I may need a break from the drug if it doesn’t clear up.
25 March 2011 – I see another podiatrist at Mountcastle, he is reluctant to take any decisions involving the toe insisting I should consult with my GP (I point out my GP reckoned I should seek the advice of a podiatrist…) He advises me not to cover it up. The nail oozes for a few days and then finally drops off and the toe clears up.
19 April 2011 - After an overnight stay in the Holiday Inn I have a scan at 9am at The Christie in Manchester. In the afternoon Professor Hawkins reckons it shows stability from the previous scan and advises he will discuss the possibility of an operation with the surgeons again. The pharmacy is out of everolimus but assure us a new batch will be couriered before I run out in 14 days.
02 May 2011 – I run out of everolimus. The Christie calls to say it still hasn’t been delivered by the drug company.
07 May 2011 A letter from Professor Hawkins brings the excellent news that the surgeons believe an operation is possible “although there are pros and cons” to be discussed.
09 May 2011 I have an appointment to discuss these pros and cons with the surgeons on the afternoon of 18th May, after my next routine visit with Professor Hawkins in the morning.
11th May 2011 – The new batch of everolimus has finally arrived. I’ll start to take it again tomorrow following the 9-day break from the drug.
18th May 2011 – Professor Hawkins reminds me that opting for surgery will mean opting out of the clinical trial, with no promise of future access to everolimus/Afinitor if the op is unsuccessful and I need the option of drug therapy again. I assure him I have weighed that up carefully but feel the op is the best possible option just now and he agrees. Robin and I meet Professor Noel Clarke in the afternoon who outlines what is involved in the op and assures me it will be scheduled promptly. I remark that I am pragmatic about the outcome but he counters that the operation could mean a CURE for my cancer!
14th June 2011 – Confirmation from Professor Clarke’s secretary that the op will take place on Monday 4th July, with a pre-op assessment appointment for Friday 24th June. I will be admitted to The Christie on Sunday 3rd July.
15th June 2011 – Robin and I attend the James Whale Fund Patient Day at The Lowry in Manchester. It’s an excellent day, very well organised and we meet a few other patients, including the ‘poster couple’, Mike and his wife.
18th June 2011 – My last visit to the clinical trial. Kerry chats through my side effect history and one of the Prof’s Research Fellows conducts a quick physical. No need to stop by pharmacy as I will stop taking tablets on Monday 19th June (two weeks before the op) and I have exactly enough everolimus/Afinitor left for that. I have a CT scan in the afternoon and will find out the results of that at my pre-op assessment appointment on the 24th.
24th June 2011 - we set off early to reach The Christie in time for the 10.30am pre-opp which is straightforward and conducted by two nurses. Sinead, the Clinical Practicioner, tells me she will be there on the Critical Care Unit where I will go after the op. They tell me that it is unlikely that my stay will only be 7-1o days and that I will probably have to stay for 14 days. They don’t have my scan results – as nurses they are not allowed to interpret scans to patients – and tell me the consultant will go over them on the morning of the op.
3rd July 2011 – We arrive at The Christie at lunchtime and I am admitted to Ward 10. I foolishly unpack before I am reminded that I will be moving to the Critical Care Unit after the op so I fill in some time packing up again! It is incredibly hot but the windows are open on the ward so that helps. More info
4th July 2011 - at the very last moment before going to theatre Professor Clarke tells me the operation is cancelled. I am shocked to hear that the latest scan shows my cancer has spread. Later, Professor Hawkins tells me that it hasn’t… More info
5th July 2011 – Kerry, the Clinical Research Nurse, calls to confirm I can rejoin the RAPTOR clinical trial for everolimus (Afinitor). More info The tablets arrive the following day,
10th July 2011 – Professor Clarke calls me at home to reiterate his belief that there is significant metastatic spread, with new tumours in my abdomen and, he believes, in my left lung and liver. He invites us to meet him at his clinic at The Christie. More info.
13th July 2011 – We travel back to Manchester and meet Professor Hawkins at The Christie. He now agrees there is evidence of further metastatic spread but is uncertain about the liver lesion and is convinced the shadow on my left lung is not cancerous. He proposes to arrange an MRI scan for my next clinic visit on 3rd August to confirm if the liver growth is a cancerous met. We meet Professor Clarke in the afternoon and he shows us the new abdominal tumours on the scan and says he believes I also have a new tumour in my pelvic area. He is confident that the growths in my liver and left lung are cancer mets. More info.
03 August 2011 I attend The Christie for an MRI scan. I was told it would take a week for the results but when we meet Professor Hawkins that afternoon he tells he has looked at the scan and it shows the lesions on my liver are NOT cancerous. Most likely they are fatty deposits, this could be a side effect from everolimus (Afinitor). A side effect of Afinitor can be elevated liver enzymes. More Info
16 August 2011 A hideously swollen face (More info) sends me to the GP who is unsure of the cause but prescribes a week of antibiotics. Kerry, the Clinical Research Nurse advises coming off Afinitor while I am taking the antibiotics – this is very frustrating as I desperately wanted a clear run of the drug before my next CT scan.
31 August 2011- CT scan and regular monthly visit to the clinical trial at The Christie, Manchester. Professor Hawkins has had time to have a quick look at the scan results and reckons that they show slight growth of the two main tumours which the trial monitors (they do not monitor the growth of the other tumours which have appeared over the past year) but no further progression. He reckons I should stay on Afinitor for the next two months until the next scan at the end of October but suspects that I will come off the treatment at that point and advises me to consider taking Sutent at that stage. I ask him about the new GlaxoSmithKline drug Foretinib (previously known as XL800) which some papillary rcc patients in America have been on in clinical trials and he says he will look into it for me.
06 September 2011 - We enjoy a great two week holiday at the Barcelo Fuertaventura Spa hotel in Caleta de Fuste. We relax a LOT and I feel very well while we are away.
25 September 2011 – I wake up to a swollen eyelid which is quite disfiguring but goes down after a few days. I don’t go to the GP as I don’t want to come off the Afinitor before the next scan.
28 September 2011 – We attend our regular monthly appointment at The Christie. I’m shocked when Professor Hawkins tells us that a further review of my last scan shows that extent of ongoing growth means I am off the trial. I should look into other drugs. He has looked into Foretinib but can find no evidence of any forthcoming clincial trials for that or any other drug which I could participate in. My medical records will be transferred back to the Western General Hospital in Edinburgh and I have to wait for them to contact me and see what they suggest – the most likely option is that they will prescribe Sutent. I am told this process could take 4-6 weeks so, medically, I am now in limbo!