Mardi Gras Beads

The annual C4YW conference for young women affected by breast cancer takes place in the US and is a joint venture between the Young Survival Coalition (YSC) and Living Beyond Breast Cancer (LBBC).

This year we were both lucky enough to each receive a partial travel grant and so with a little help from our friends (and a whole lot of swimming) we made the epic journey to New Orleans last month, took in a little Mardi Gras and a whole lot of useful information for us young things on this breast cancer journey or YWBC as we shall be known from now on (might as well join in on those abbreviations!).

Among the workshops and plenary sessions we attended were talks on the following:

  • Reconstruction options
  • Managing fears of recurrence
  • Sexuality after cancer (indeed it appears there is such a thing!)
  • Fertility before and after breast cancer treatment
  • Eating and exercise for health

We’ve summarised below what we gained from the sessions  – there were so many we couldn’t attend them all but never fear as those kind folks at C4YW will soon be making all of the talks available as podcasts and MP3 files so you can download them and have a listen for yourself.  We’ll keep you updated and let you know as soon as this happens so you too can catch up on the latest information.

Reconstruction Options & Open House (basically a look and feel session!)

This talk was given by Dr Sullivan of the Centre for Restorative Breast Surgery based in New Orleans and was a brilliant introduction to breast reconstruction options for those who have yet to undergo this part of the journey (including both of us).  He first highlighted the different options available which included tissue expander/implants, flap surgery (TRAM, LAT)/implants and finally the latest microsurgery using your own tissue (DIEP, TUG and SGAP flap procedures).  Then the risks and benefits were outlined for each procedure.  As a pioneer in the US for microsurgery its no surprise that microsurgery was Dr Sullivan’s preferred option, but the information and photos he shared on all types of reconstruction was food for thought.  It was also great to talk to so many women who had already taken this significant step in their journey and learn of their personal experience. You can learn more at the Centre for Restorative Breast Surgery website  http://www.breastcenter.com/

Managing Fears of Recurrence

Dr Mindy Greenstein is a medical professional who has experienced both sides of the breast cancer journey.  Firstly, in her work as a psycho-oncologist offering support and devising programmes for people whose lives are affected by cancer, and later secondly upon her discovery of her own breast cancer as a young mother of two.  Its no surprise then that she was able to bring some humour and personal examples to the very real fear that accompanies us YWBC at every step of our journey.  Its somehow comforting to know that, even as a psychiatric professional, she too struggles with the old ‘positive thinking’ dilemma  and all of the the tools that she employs to cope day to day are rooted in the art of mindfulness of the present moment (based on the work of John Kabbat-Zin in his excellent book Full Catastrophe Living).  In essence its being aware that while we can’t change the past or the future, we can be here right now in the moment and this something over which we all have total control.  You can learn more about Mindy at http://mindygreenstein.com/ and check out her very funny blog at http://www.psychologytoday.com/blog/the-flip-side

Reclaiming your sexual mind and body after cancer

The room was packed for this session and the presenter (a sexual therapist who has been through the journey of treatment for her own breast cancer as well as now enduring the estrogen drought due to ongoing hormone treatment) did an amazing job of talking about the most personal and intimate details that we are all experiencing just like she was reading the weather! There was both laughter and tears in the audience as she talked about the fears, sadness and fatigue we all feel at times in relation to our sexual selves in this ‘new normal’ and her advice for combating the effects of treatment both physically and mentally was extremely well-received. Dr Sabitha Pillai-Friedman is on the advisory board for Living Beyond Breast Cancer (among many other things) and her wonderful advice can be found on the LBBC website at http://lbbc.org/Event-Archive/2010-11-13-Sex-Matters

Fertility before and after breast cancer treatment

For any young woman undergoing chemotherapy and hormone treatment, the issue of fertility before and after treatment is probably one of the main concerns.  In this session, fertility expert Sissy Sartor of the Fertility Institute of New Orleans covered options available to preserve fertility (IVF, egg freezing and ovarian tissue transplant) prior to treatment and options for pregnancy afterwards.  One surprise was to find out that the number of woman pursuing pregnancy after treatment is very low and not for the reason you might expect – in fact the main reason for not going on to have a baby is actually a fear of recurrence rather than impaired fertility itself!  Its reassuring to then find out that pregnancy within two years of diagnosis does not actually increase the chance of recurrence – even in those women with estrogen receptor positive cancer (a fact that was reinforced further in the media this past week with the release of a European study that implies pregnancy within two years of diagnosis might actually have  a protective effect against recurrence). The Breast Cancer Aoteoroa Coalition (BCAC) of New Zealand has some great information at http://www.breastcancer.org.nz/content/Support/Young-Women/Fertility%20

Eating and exercise for health 

Dr Ro is on a crusade along with the famous Dr Oz to improve the health and wellbeing of everyone in the US (and at the time that included us!) by encouraging them to get Livin’ Healthy and take 10 steps to lose 10lbs (about 4.5kg).  By losing just 10 pound you can lower blood pressure, reduce the risk of stroke, ward off dementia, lower you risk of breast and uterine cancer and lower your cholesterol by up to 10%.  Now if Dr Ro is anything to go by then her advice would be well followed – the woman looks about 30 tops (she later went on to reveal in jaw-dropping fashion that she is in fact in her 50s!)  The 10 steps are: cutting out soda, stop eating at least 3 hours before bed, move for 10 mins each day, exercise portion control, weigh yourself every day, take vitamin B complex every day, take your vitamins, recipe reinvention, know your serving sizes, conquer your cravings and keep the weight off (oh is that all?!) you can find out more about Dr Ro at www.everythingro.com and the 10 steps at http://members.doctoroz.com/challenge/the-just-10-challenge

All in all it was an amazing adventure for us both and some well earned fun after the shenanigans of the past 18 months. Thanks to our amazing friends and family and indeed everyone who made it possible with your support, donations, childminding and shuttle services!

K & C

xxx