62. My Race for Life

It's here..tomorrow..Race for Life fundraising 5k for Cancer Research UK. I've raised over £600 so far. Tomorrow will be hard last time it reduced me to tears seeing all those women doing something in memory of people who have died horrible deaths from cancer. This time I am not alone - there will be 10 of us with a long list of In Memory Ofs pinned to our backs. As a group I hope we raise some awareness about hereditary cancer and about BRCA Umbrella the support and social network I set up back in February.

I am excited to finally meet with Lisa, Susanne, Flo, Rian, Michelle and Elaine. I am proud of what we are doing and that I am not alone. I feel better for knowing that I shared my journey through all these hard, life altering decisions about surgery, feelings and life with these women. (Karen, Rhonda, Karen and Amy - I wish you were joining us!! xx)

So, to double check my packing, get some fuel, start my journey to Birmingham.

It's going to be a long day. I have to drive 4 hours in total and tomorrow I have to do my Race for Life..9 weeks post surgery. Whew!

Thank you to everyone who has sponsored me, your messages, your kindness. Thank you for caring about me and about my cause.

Time to go..time to leave :D

56. Time to disturb the mothballs

I am doing my bit for chaity again but I can assure you that doing Race for Life this year is more challenging for me than it is for you to get your debit or credit card out and pledge a LARGE or a small donation online for Cancer Research UK. Check out my page --> http://www.raceforlifesponsorme.org/leighannjones

Me abseiling 200ft off the Civic Centre in Plymouth





Me running (yes running) the Race for Life on Plymouth Hoe (5km)








This year is special. I am meeting with some very special women who have shared their own intimate journeys, feelings, choices..some even photos of their own scars and knowing them has helped me get through this. These women also have BRCA1 or BRCA2 gene mutations, some have unfortunately already had cancer, some have taken the preventative surgery route like myself but all of us have struggled through our diagnosis, the implications of knowing about our high risk of cancer and how it can filter through the family. We have all endured many family deaths from cancer and we unite this year to make our gene known - we go to promote the support site I set up and we need your cash.

Me in my stylish umbrella hat!



BRCA Umbrella - the support site I set up for people with BRCA gene mutations



Imagine if you had to watch your children agonise over whether to have children or not because of a gene you had passed onto them, imagine watching them decide to undergo 10 hours of surgery to remove perfectly healthy breast tissue or wombs or ovaries.

Now imagine a moment when all that had to happen was a gene mutation fix, where family was no longer an agonising worry, where cancer was no longer a threat..for life.

Your money can help research get there.

38. BRCA Umbrella - Social Network for BRCA+ people

I stumbled on an excellent, user friendly social networking site, 'Ning' that allows you to set up your very own social network - so I did! I called it BRCA Umbrella so that everyone who finds it or is directed there can come and huddle under the umbrella.

The name..well, I love umbrellas. I have one with dragonflies on it, Mum gave it to me. I have shared umbrellas with people, random people, briefly..sheltering from bad weather, wind and snow. It's amazing how people will reach out to each other with an umbrella yet they wouldn't stop and let you get into their car if it was peeing it down would they? The phenomenon of umbrellas..complete strangers inviting you to share intimate space with them. If you haven't done it, try it..or if you are a BRCA+ lady (or man) and want to share the BRCA Umbrella..follow the link and register - it's free! You can blog, post photos, videos, links, chat, there's a forum and also a lot of fantastic, brave, inspirational and beautiful women to share and guide and hold your hand when you need it.

BRCA Umbrella - bringing BRCA+ people together

36. MRI Breast Screening - Surveillance for BRCA

Following my recent discovery of the lack of funding and availability for MRI breast screening for women with a high risk breast cancer, I decided to start investigating MRI breast screening..so I wrote to the Health Secretary, Alan Johnson.

"Dear Alan Johnson

I am 35 and have a family history of breast cancer and subsequently diagnosed with the breast and ovarian cancer gene BRCA1. In March I will undergo surgery to remove my healthy breast tissue in order to reduce my risk of cancer from 85% to 1%. This is a huge decision and will effect the rest of my life but it the only one I feel is sensible given the alternative.

The alternative is Mammography - proven to be very ineffective for women under 50 and with the gene mutation I carry, could trigger the very cancer it looks for! I recently spoke to the NHS Breast Screening Programme who stated that an MRI breast screening pilot scheme is being rolled out across the UK this year (2009) to women with a high risk of breast cancer but that it is only available for women over the age of 40.

My Aunt died at 27, my cousin had a double mastectomy at 33 and I am 35. It is known that BRCA1/BRCA2 gene increases the chance of cancer at a much younger age - generally under 50.

I would like clarification on this pilot scheme and hope that I have been misinformed on the age limit. The Government's strategy is to increase cancer detection services and the many BRCA+ women I am in contact with feel they are faced with little choice other than to remove their healthy breasts because there is no MRI funding for them to undergo surveillance instead. This is just one facet of the gene mutation - another is the lack of ovarian cancer screening and whether to have children or not, or HOW to have children.

I would appreciate clear response on this matter.

In Canada it is standard practice for MRI screening surveillance and MRI screening before breast surgery to ensure effective surgery is planned.

Will I have to continue to undergo Mammography x-ray and take the trigger risk and the ineffective results?

We need change - we account for 5% of breast cancer patients and therefore it is a small funding factor. It would make the very difficult decision to remove your breasts less of an option if reliable annual MRI screening was available to women diagnosed BRCA+ from the age of 25.

To summarise:

Q. Is the MRI breast screening pilot scheme for high risk women available to ALL BRCA+ women or just those over the age of 40?

Q. If not, WHEN will it be available to ALL BRCA+ women from 25?"

I will keep this subject posted when I receive a reply. I may need to campaign on this matter - even though it is too late for me to choose MRI surveillance, with my surgery booked for March and currently it is not offered by the NHS.

Watch this space!!!

PS - Further information I discovered - The Government have plans to implement the changes made to the NICE Familial Breast Cancer document (see link below) updated October 2006 "3.26 Currently the surveillance of all women identified as being at high risk is managed at a local level to varying protocols. The NHSBSP offers the opportunity to manage such surveillance to national standards, ensuring women receive a consistent and high quality service. The NHSBSP will take on this surveillance, which CHAPTER 3: DIAGNOSING CANCER EARLIER 47 will include access to MRI scanning as stated in the NICE partial update of the Familial Breast Cancer Guideline (October 2006). It is expected that this new system will be in place from 2009."

Click here for for information about breast screening women under 50 (PDF)

Click here for NICE Familial Breast Cancer - screening information

Click here for Department of Health Cancer Reform Strategy (exerpted above) stating the MRI screening plans