PET Scan is scheduled for...

Wednesday, Dec 1st. I will walk out with the results in my hand, on a CD.

Update: November 25, 2010

I am working on writing "my story" to put on this blog but it turns out that it's going to take WAY longer than I anticipated. So for now, I will give an update on what's been happening over the past couple months and where I see things going~

On October 14, the day before my last chemo was scheduled, my oncologist decided that it wasn’t working and it looked like the tumour was growing rapidly and had spread to the skin. That was a Thursday and by Tuesday I was in for my surgery; a double mastectomy. Since then I have been recovering well. However, when I met with my doctor and received the pathology results it showed that although the surgeon was able to remove the tumour with clear margins, the tumour had almost doubled in size and spread to all (19) lymph nodes and the skin. I have been told that there is an extremely high chance of recurrence and spreading but that there is no other systemic treatment (chemo) available. Basically, I will have my radiation (to reduce local recurrence) and then just have to cross my fingers that it doesn’t spread. Obviously, this was very bad news.

Since then I have been in contact with a woman, Kelly, who was in the exact same situation as me back in 2003. She decided to pay for a PET scan at a private clinic because, even though it is the best scan for earliest detection of spreading, her doctor said it would take several months to get it done at the BC Cancer Agency. After having the scan done she found that her breast cancer had started to spread. After doing thorough research on the best cancer clinics in the world she decided to go to Germany to continue her treatment. When she came back, her doctors were shocked that her breast cancer metastasis had disappeared when it is considered “incurable”. 

In Germany they do blood tests to monitor the tumour cells circulating in your blood (CETC test) and then test that blood against various chemotherapy agents (Chemo-Sensitivity Testing) to find the best one for you. They then combine low dose chemo with hyperthermia (heats the body to make chemo more effective) and also include various naturopathic infusions to support your immune system during treatment. During your treatment, they are constantly monitoring the circulating tumour cells in your blood to determine if they should continue or alter your treatments. At this German clinic the naturopathic oncologists work together with the medical doctors/oncologist. In Canada, they are completely independent of each other and often seem to be working against each other (in my opinion) Therefore, if you want to receive treatments similar to what they do in Germany you have to do the leg work yourself; have your blood sent out to Germany, find an oncologist who is willing to treat you based on the German tests and then find a naturopathic doctor to work with you on the other stuff.

Kelly recently explained to me that the BC Cancer Agency is meeting with one of the main doctors from Germany next week and they will be starting a clinical trial, here in Vancouver based on the all these German techniques. In fact, it was Kelly who had organized this meeting, and clinical trial; she brought over her doctor, Dr. Pachmann, from Germany.  I was hoping to get into this trial and met yesterday with one of the Vancouver doctors, Dr. Klimo, who will be conducting the trial. Dr. Klimo explained that it will be several months (at least) before the clinical trial is up and running and that I can’t afford to wait for it. He suggested a PET scan immediately, before my radiation starts, and said that if I send out my blood to Germany for the circulating tumour cells test and chemo-sensitivity testing (a naturopathic clinic in Langley will do this) then he will treat me based on this. Dr. Klimo said that if I were his daughter, this is what he would tell her to do; those were the magic words for me. My oncologist works out of the Fraser Valley Cancer Clinic and is not allowed to do this – she has a standard protocol to follow that their research shows works for the majority of women with my kind of cancer and that is all they can do - basically, she will not treat based on a technology that the BC Cancer agency has not yet put their stamp of approval on. Although she was wonderfully positive and supportive during my initial diagnosis and treatments (and I feel a sort of loyalty to her), I think it's time to move on.

I will be having a PET scan done within the week to determine if there has been any spreading and to help the radiologist target my radiation to any left over cancer cells. This costs $2800. In the next while I will also be having my blood sent out for the two tests done in Germany. This costs $3000 to do through the Langley Clinic. I am hoping that the test shows a specific chemo drug that will target my cancer and (although I hate to even think of this) then I can have more chemo along with hyperthermia treatment and naturopathic infusions. The hyperthermia is even more expensive. We expect that the bill will get pretty high but will probably be cheaper than heading off to Germany! (which I still haven't ruled out :o) 

I know that none of this is a magical cure and what works for one person doesn't necessarily work for the next. However, just the feeling that I can at least do something has given me the strength to literally get out of bed to fight this and not slip into a deep, depression. Having to live in a reality where I cross my fingers to hope for the best is not where I need to be right now.

Darren and I have decided that we will do everything we can to fight this cancer and reduce the chances of it spreading. We know that it will be expensive and are willing to get into huge debt or even re-mortgage our house, if needed. This whole ordeal has been so stressful and emotionally unbearable at times.  I feel extremely lucky to have such great friends and family who have gone above and beyond to help us by organizing fundraisers for this cause. We are also so appreciative of all the friends of our friends who are supporting them both emotionally and with the fundraiser efforts.

Thank you to everyone who has sent us cards and emails with well wishes, sent flowers and gifts to cheer me up, cooked dinners, sent yummy baking, handed us cash, sent over the cleaning lady :o), given us gift cards and helped with the kids. Thank you to Darren's work for being so supportive and flexible. And thank you to all my family and friends for listening and being interested. We could not have made it this far without all of you.

• Use the links along the right hand side of this page to learn more about my treatments.
• To read more about PET scans: http://pet-ct.ca/

Upcoming Fundraiser

http://www.facebook.com/event.php?eid=176123069067924&index=1
or contact Lindsey or Kathy for more info:
Lindsey - harmanlinds@gmail.com
Kathy - Kfurlong@telus.net