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Raising funds for CyberKnife Cancer Radiotherapy Treatment
I am 48 years old and I am married with two teenage daughters. I was first diagnosed with breast cancer in 2004, it was a 3.5 cm tumour in my left breast. My tumour was removed as well as my lymph nodes, and I received radiotherapy to the breast. My follow up treatment was a chemically induced menopause and Tamoxifen.
I did very well for four and a half years, then I began experiencing pain in my left armpit and down my arm, I attended the GP 5 times as well as the breast surgeon and oncologist over a period of 8 months before I was eventually diagnosed with an inoperable reoccurrence in my axilla. Unfortunately it was unlikely to be amenable to conventional radiotherapy due to my previous treatment and I was told that my only option was hormone therapy to attempt to shrink the tumour, then maybe they would consider radiotherapy. When I was diagnosed my tumour was 3 cm and had grown into my chest wall and in between my ribs, however there was no evidence of distant metastases.
I then posted a plea on the breastcancer.org forum and a very kind oncology nurse from NY, who had worked in a CyberKnife centre prior to her diagnosis, wrote to me about the treatment, and she strongly urged me to look into it.
I carried out a lengthy internet search and contacted several CyberKnife centres in Europe and the US. The European centres would not consider my case as there was insufficient evidence to support the use of CyberKnife with breast cancer, the US clinics were mostly happy to view my records but admitted they had no experience in treating BC. I then decided to scour the net for anyone who had used CyberKnife to treat BC. That is when I came across Dr McLaughlin, he had successfully treated 5 women for inoperable reoccurrence, and at that time all were alive and disease free. I contacted Wellstar in Atlanta, spoke to the CyberKnife co-ordinator and thankfully they agreed to review my records.
Unfortunately my oncologist did not support my decision and declined any NHS funding, she also refused to make the referral, so I had to apply to two different health authorities for access to my clinical records.
I posted them to Atlanta and following a review of my CT images they decided to offer me treatment. We were thrilled, but sadly the cost was to be over $100000.00 and there was no way we could find that kind of money. Madge, the CyberKnife co-ordinator at Wellstar told me she would apply for some financial support so long as I submitted my financial details, which I did. We waited anxiously for a couple of weeks while she worked away behind the scenes, and finally she came back with a very achievable quote, less than the cost of a new car!!! I am eternally grateful to her because she worked very hard for me to be able to afford treatment.
In July 2009 My husband, youngest daughter and I set off for Atlanta. Unfortunately, due to my being a bit flaky prior to the trip, I had forgotten to order a bankers draft to pay for treatment, so we had had to take the money in cash dollars, which my husband had stashed in a money belt!! They had a chuckle when I arrived and handed over payment in cash.
We were there for 2 ½ weeks, initially I was given a HDCT scan which are 1mm slices from the top of my head to my abdomen, this was necessary to plan treatment. Then my fiducials were implanted three little gold pins embedded into the tumour, this was done under CT guidance and sedation, it was relatively painless and took about ¾ of an hour.
I then had a week off to give the fiducials a chance to settle, they needed to be stable as they would be used to calibrate the CyberKnife machine. During this week I also had a special mould made of my body to ensure my body would be stable and exactly the same for each treatment. This was just a big beanbag and when I lay on it the air was sucked out creating a perfect mould of my body, this was then placed on the CyberKnife table and photos were taken of me in position to ensure they could reproduce it exactly for each treatment.
Then my treatments commenced, I had 5 treatments around 1 ¾ hours each. The staff were fantastic, they were friendly, considerate and nothing was too much trouble, I was put at ease and this helped a lot. Dr McLaughlin saw me every day and kept me fully informed, he was wonderful, he was never rushed, happy to answer any questions, didn’t talk down to me, and explained everything thoroughly.
The treatments were a piece of cake!!! I chose to be seen first thing, so 8.30 am each morning I had my treatment, settled in, laid back listened to the music and chilled, I think I was just so elated and relieved to be there, it was the best I had felt in months.
In the afternoons we holidayed, we shopped, went to theme parks, all the usual tourist spots Zoo Aquarium Coke museum etc and at night we ate out or went to the cinema. There was one day after the 3rd session I was tired and lay in bed till 2pm, otherwise I was cooking on gas!!
My skin reddened slightly on my shoulder after the last treatment, when we were in the water park, I think it was the combination of CyberKnife and sun, but it cleared up after a day or so. Then we flew home and I have never looked back. It is the best thing I have ever done!!!!!!!
The doctors over here still insist that my remission will not last, but 2 years on and I feel great. I feel as well as ever, I do get pain in my shoulder and I have lost some range of movement which I was told to expect, but otherwise I feel fit as a fiddle and lead a full and normal life!! I feel I have been given a second chance when the NHS had all but given up on me. My UK oncologist told me on my return that I would never have been amenable to conventional radio therapy (in her opinion), I wish they had told me that sooner.
My care plan was to take hormone tablets till they fail, then chemo till that fails then farewell, but so far my tumour is perfectly stable (it shrank for the first year then stayed exactly the same) I remain on the hormone tablets with no distant mets and so whatever happens from here on in I have had at least 2 good years, in great health thanks to CyberKnife. It gave me hope and a sense of control over my disease which I didn’t have prior to treatment.
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The Stan Bowley Trust is a registered Charity No.1144398 working in partnership with the Queen Elizabeth Hospital Charity registered Charity Number 1093989