Tumour Profiling & why I’ve decided to have my ovaries removed

Posted: January 29, 2015 in Round Three, Vita Blog
Tags: , , ,

An amended version of this post is available on the Breast Cancer Care Vita Blog: http://www.breastcancercare.org.uk/news/blog/why-i-ve-decided-have-my-ovaries-removed

Tumour Profiling

A while back you may remember I wrote about something called Tumour Profiling.

Current treatment for cancer is very much trial and error. A drug which works really well for one patient, might be less effective in another patient with the same type of cancer. When I was being treated for primary cancer (in the breast) I was on a chemotherapy regime called FEC. This didn’t have great results for me, although I know other women who had a great response.

Since being diagnosed with secondary (metastatic) disease I’ve been on a number of different drugs. Some of these have worked and some haven’t.

Chemotherapy isn’t pleasant and it’s even less enjoyable finding out that the drug you’re on isn’t working. Not only is it a waste of time, it’s an incredible waste of resources. This is where Tumour Profiling comes in.

Profiling of tumours isn’t new and, with breast cancer, certain receptors are already routinely tested: Oestrogen (ER), Progesterone (PR) and HER2 protein. My cancer is ER+, PR+, HER2-ve. The hormone positive status of my cancer means that it should respond to hormone therapies, but so far they have all failed. It’s very likely that the cancer has mutated and developed resistance to certain drugs.

Tumours can develop drug resistance very quickly. This is why patients with secondary cancer often end up in a continual cycle of treatment.

Tumour profiling allows doctors to identify further genetic mutations and to personalise treatment. It speeds up the treatment process and rules out ineffective, potentially damaging treatments.

I’ve had a rough time with chemotherapy from the start. My body doesn’t like being poisoned, so for me this report is invaluable. It means I don’t have to put my body through treatments which aren’t going to work.

The results 

When I received the 23 page report back in November I was a little underwhelmed. It’s hard to reconcile the piddly pile of paper I received with the huge sum of money paid for the test. It didn’t help that I don’t understand much of the report. I’m no numpty, but I’m also not a scientist.

As so many of you generously helped me pay for the test I thought you might want a peek. I’ve attached the main bits here so you can have a nosey and let me know what you think: Tumour Profiling

So was it worth it? According to my consultant, YES.

It identifies a number of biomarkers which correlate with specific chemotherapy regimes. The results also highlight one gene mutation TP53. The tumour protein P53 is a tumour suppressor gene (it prevents cancer), so it’s a really common gene mutation for cancer patients to have. However the TP53 gene mutation can also be inherited (like the BRCA1/2 gene fault) so there is a possibility of a familial link. This is a question I’d like answered as we have a lot of cancer in our family, including mum who had primary breast cancer in 2013. I should add we don’t have the BRCA1/2 gene faults.

The report matches me with ten chemotherapy drugs and ten hormone therapies defined as ‘Agents Associated with Potential Benefit’. I’ve already tried some of these drugs, but there’s a fair few still to get through. One of the drugs that I’m compatible with is a bowel cancer drug Irinotecan, so you can see why the report is a really beneficial tool for clinicians.

The report also has a clinical trials connector which matches the patient with suitable trials. Many trials look for patients who have specific gene mutations or biomarkers. Establishing whether your genes are wonky enough to take part in a trial is a long and laborious process. Having all this information to hand will make it much easier for me to access suitable trials.

What now?

I’m currently on an oral drug called Teysuno, normally used to treat stomach cancer. Teysuno is in the same family of drugs as Capecitabine, the one that made me really ill. It is supposed to be less harsh than Capecitabine but the side effects are beginning to catch up on me now. My face is red, sore and blotchy and I have days (like today) when I feel pretty grotty. I just feel icky, tired and sapped of energy.

In an ideal world I’d like to get back onto hormone therapy as this is much less invasive than chemotherapy, however most of the hormone therapies I’m potentially compatible with are for post-menopausal women. To access these drugs I have to get my ovaries either removed or switched off (chemically). We already tried switching my ovaries off with Zoladex (Goserilin) however this didn’t work, so I’ve decided to take the drastic step of having my ovaries removed (an oopherectomy). This might sound extreme and rather final, however oestrogen is the main source of fuel for my disease, so it makes sense to cut off the supply.

What I have to look forward to

What I have to look forward to

As many of you know I’m also planning on relaunching my business Killer Kilts very soon. It’s been incredibly frustrating, as the ups and downs of treatment make having a normal life incredibly difficult, but I’m really determined to get things going. I’m slowly getting there but I might have to delay the relaunch until after surgery.

Obviously I’m hoping I will make loads of money, but the most important thing for me is that it will give me something else to focus on instead of cancer. I’m also hoping to have a big trip later in the year (when I make all this money) and plan to visit friends and family in Australia, New Zealand, Vancouver and New York.

I just want to say thanks again to everyone who helped me pay for the Tumour Profiling report! If anyone is interested in finding out more, or wants to know how to go about arranging the test, just drop me a line: killerkath@outlook.com

 

 

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Comments
  1. Ian says:

    Looking forward to seeing you Kath. Great article. X

  2. Thanks for keeping us informed Kath. Hope you feel better over the next few days and look forward to seeing you very soon. All the best with the KK relaunch and a trip is a brilliant idea. Lots of love xxxx

  3. Anonymous says:

    Hi Kath. Good luck with your new venture and the trip sounds fab.Sorry I missed you last week but I had to go for an urgent MRI scan.Looking forward to seeing you soon. Stay strong and keep everyone up to date on what you are up to . I love reading your blog.Good luck with the operation Love and hugs Mary xx

  4. Kate Gould says:

    Hi Kath! I found the hystersisters site really helpful when I got a hysterectomy. They have all sorts of resources and an online support forum if you have questions. Good luck with the operation. I’ll be thinking of you.

  5. Kerry Varma says:

    I am so happy you have your website to share this info with us. I read all your posts. Am thinking of you lots and I’m really happy that you mentioned Vancouver in your trip! It’s not the same keeping in touch through the internet, and all I want to do is to take you to beautiful spots that will enrich your soul, and we can have a good blether! Love and miss you, sista! X

  6. Anonymous says:

    Thanks for the blog Kath. Hope you are feeling a bit better. It was great to see you last week. Hopefully you will be able to make a few days on Arran. See you soon xxx

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