The consultation at the London Oncology Clinic was very positive. The consultant we met with was very friendly, understanding and honest. At no point during the meeting did he try and sell the clinics services or deter us from using the NHS. My brother in law (No. 2) and I found this so reassuring and a complete contrast to the Dove clinic’s antics.

He was surprised that my father had not already started 1st line Chemotherapy and did not agree with the NHS odds of 1 in 20 of it being effective. He discouraged the use of Tarceva as my father did not match the profile of a person who would most likely benefit from it (non-smoker, female). In addition to this, Tarceva was nearly always used as a follow treatment where chemotherapy and radiotherapy had failed, not as a first line treatment. In addition to this, the consultant explained that the first line NSCLC chemotherapy agents to tackle sqaumous cell cancer offered by the NHS was the same as what he would offer privately. It would be better to push for this via the NHS rather than pay for the same treatment.

I then explained that my father was due to go through a knee replacement operation next week. This actually changed things. The consultant explained that my father could not go through Chemotherapy whilst recovering from the surgery. Instead, he suggested we start Tarceva during recovery and move onto Chemotherapy once my father is string enough after approximately 3 -4 weeks. At the end of the day, there is a small chance that Tarceva may work and it is better to try something that nothing.

So finally, we have a plan of attack and my father can go ahead with the knee surgery and we get to try out Tarceva.

I was sent a link to a drug called Tarceva. I was supprised to learn that it is being offered in Scotland but not in England or Wales.

Apparently, this treatment costs approximatley 80,000 pounds a year if you were to go for the private option. It’s expensive, but reading through the various trials and forums, it has been proven to extend life and reduce if not stop the spread of non-small cell Cancer.

I have taken the liberty to include some links to the information I have found.

My next task is to ask the consultnat about this treatment route and whether my father is an ideal candidate.

Then we have to look at the options of private treatment (very expensive) or moving to Scotland…if it comes to the crunch we may have to.

http://www.tarceva.com

http://www.tarceva.net/

http://www.roycastle.org/patients/forums/viewtopic.php?t=66&sid=7c5a877215bba2ecc8d4c00b77185aa3

http://news.bbc.co.uk/1/hi/health/6144274.stm

http://www.prnewswire.co.uk/cgi/news/release?id=154191

http://info.cancerresearchuk.org/news/newsarchive/2007/march/18085427

On the 21st August my father, myself and brother in law attended an appointment with the Lung Specialist. It was the news that we were dreading, praying and hoping not to hear. The biopsy results confirmed that the large grapefruit like mass was as suspected a grapefruit sized malignant tumor. The same sqaumous non-small cell cancer cells had been detected as in the brushings obtained during the broncoscopy the week before. The consultant was of the opinion the cancer had been gestating for the last two years.

We felt like the world had ended as the consultant spoke. Then things went from bad to worse.

The consultant showed us the CT scan pointing out the tumor. It looked very big and he was fairly sure that the lymph nodes were infected preventing the first option of the 5 he then gave.

Options:
1. Surgery
The size and position of the tumor as well as the strong possibility that the lymph nodes are affected prevents us from choosing the surgical route. Even if the tumor is removed, the lymph nodes would in time infect the other lung. How much time, well the consultant spoke of months rather than years. Additionally, the tumor is very close if not on the lung lining making surgery an even riskier prospect.
2. Radical Radiation Therapy
This is an option, an option that was given during the panels MDT meeting. The premise being, reduce the size of the tumor and the lymph nodes killing the cancer thus buying more time. The drawback, in the process of doing so, as the lymph nodes are located in the centre of the chest there is a high possibility that the gullet would be permanently damaged rendering my father unable to swallow. In addition to this, there will be some major scarring of the left lung which will impact my fathers breathing and extreme tiredness. The consultant was unable to tell precisely how much, but basically said, ‘some patients can suffer some shortness of breath, others can be wheel chair bound. Chances of success are between 20%-30%, success is an increase of around 4 months life. Before moving forward with this option, a PET scan is required to access whether the cancer has spread.
3. Chemotherapy
As this is sqaumous non-small lung cancer, from past experiences radiation therapy is more effective. chemotherapy can be used perhaps afterwards to kill any existing cancer cells in the body.
4. Gentle/Palliative Radiation Therapy
This is to reduce any symptoms such as shortness of breath and allow my father to improve the quality of life. The aim is not to extend life but to provide a better life. The side effects are tiredness and some shortness of breath.
5. Do nothing
My fathers symptoms will really begin showings and he will most likely survive up to 6 months.

The consultant advised that there was a lot to think about and honestly gave my father between 6-12 months survival. We highlighted that at present the only symptoms my father is displaying is some very mild shortness of breath and daily sweating and some fever. The actual pain is originating from his arthritic knee which he has been treating with painkillers for the last two year whilst waiting for replacement knee surgery.

The consultant agreed with us that the knee is having a large impact on the quality of my father’s life and has decided to write a letter to the knee specialist advising that he urgently progress this as soon as possible before my father begins treatment for his cancer. We are prepared to do this privately if required.

So the plan is as follows:

1. Replacement knee surgery / Make appointment for PET Scan
2. Change my fathers diet drastically to increase the strength of his immune system
3. Begin large dosage of cancer fighting supplements
4. Obtain fathers test/medical records and see consultant at Dove clinic to talk about IV Vitamin C therapy.
5. Once knee is relatively healed, begin mild radiation therapy moving on to radical radiation therapy.
6. Investigate chemotherapy option.

We are also hoping to obtain a second opinion once we have a copy of the medical file.

My brother in law and family came to visit my father today. They travelled from quite far and came with some surprises. Looks like bro in law has been doing a lot of research around the cancer field and being that he is a nutritionist by profession has devised a strict diet for my dad. The only drawback, 4 large heavy boxes of supplements and a stubborn man that loves his food even though he now weighs 11 stone.

We are all going to see the Lung Specialist in the morning. We are pray that inshallah this nightmare ends in a misdiagnosis.

Scrap that last sentence. We have to be realistic, we have to face the bad news and prepare for what lies ahead. That’s the only way to remain in control.

My father went into hospital for a blood test today. He is due to have a CT assisted biopsy tomorrow at 10.30am at our local hospital.

A CT assisted biopsy is required to establish 100% whether he has Lung Cancer. At present, they are 95% sure based on samples taken from the lung during a Broncoscopy.

The procedure will entail my father resting under a CT scanner whilst they insert a needle into the tumor through the bottom section of the lung. Thankfully, the said growth is at the bottom of the left lung, this will reduce the risk of a collapsed lung. He will need to stay in Hospital for approx 4 hours after the procedure to make sure he does not suffer any internal bleeding or a collapsed lung.

I’ll be heading over to be with him in the morning.

My father was diagnosed with Lung Cancer on the 7th of August 2007. Until then, we were under the impression that he was suffering from an abbesses in the Lung. This was the conclusion we we were lead to after 10 days of hospital stay.

I took the phone call from my crying distraught father at 5pm that day. The consultant did not have the dignity to allow me and my family to be with my father when he broke the news.

He is at home now recovering, beginning to eat more but still breaking into a high temperature on occasion. The doctors believe he may have an infection as well as cancer.

He has been diagnosed with a tumor the size of a grapefruit located on the bottom left hand side of the left lung. They have also detected swollen lymph nodes in the chest. The cancer which has been detected is of the type squamous non-small cell cancer.