The dawning of a brand new day as out of bed I climb.
I’ve found since I got breast cancer, I’m pretty short of time.
I’d love to accept invites, but my friends don’t have a clue
I’m just so bloody busy with the things I have to do.

First task I’m in the kitchen with my “new best friend” the juicer
I can feel myself get better (I can feel my bowels get looser)
All organic beets and oranges, five kilograms a day
Without a frown I slurp it down and then I’m on my way

Monday is lymphatic drainage, with a deep massage to follow
Then I touch base with my naturopath for hints on what to swallow
On Tuesdays I have counselling then full 3 hours of reiki
A phone in with some ladies leaves my schedule somewhat shaky

I don’t eat chook or dairy, anything that had a “Mum”
But once a week a man comes round, sticks hoses up my bum.
I meditate 3 hours a day in candle lit seclusion
It’s not so hard to find the time, that’s just a false elusion.

Twice monthly I’m rebirthing, the feeling’s so unreal.
My Mum (who doesn’t understand) says her stitches never heal.
You’ll find me on a Friday with a group so dear and kind
And we tweeze out old forgotten hurts round campfires in our mind.

I don’t drink tea or coffee, alcohol never a drop.
I’ll list the things I eat and drink. Fruit, vegetables full stop.
It’s a very hectic schedule and for wellness that’s the fee.
But if you smell burning martyr, well OK, I guess it’s me.

Deep in my dreams I lunch with friends and time does not construe.
I order steak and chips and gin and 20 Winfield blue.

Women who join the group are asked to complete a comprehensive set of questionnaires, asking them about their recent experience of living with secondary breast cancer, when they first join and every six months thereafter. To read more about the results, click here.

Further information about Advanced Health Directives, also known as A Living Will, can be found on the NBOCC site at this link

http://nbocc.org.au/breast-cancer/living-with-breast-cancer/putting-your-affairs-in-order#AHD

Information about advanced health directives and enduring powers of attorney in Queensland can be found here.

http://www.justice.qld.gov.au/justice-services/guardianship/making-health-care-decisions/advance-health-directives

Information for other states can be found by doing an internet search.

To listen, go to this link, where you can either listen live, or download the podcast or the transcript of the programme.

http://www.abc.net.au/rn/ockhamsrazor/

Removal of Primary Tumor in Metastatic Breast Cancer May Prolong Survival

Roxanne Nelson
Medscape Medical News , 2009-09-21

September 21, 2009 (Berlin, Germany) — Surgical removal of the primary tumor in patients with metastatic breast cancer — which is not currently standard practice — could greatly improve survival. According to data from 1 study presented here at the 15th Congress of the European CanCer Organization and the 34th European Society for Medical Oncology (ESMO) Multidisciplinary Congress, tumor removal was associated with a doubling of overall survival.

“Removing the tumor was associated with a 40% reduction in mortality,” said study author Jetske Ruiterkamp, MD, a surgical resident at the Jeroen Bosch Hospital in Den Bosch, the Netherlands.

The median survival of patients who underwent surgery was substantially longer than those who did not (31 months vs 14 months). “The 5-year survival rates were 24.5% for patients who had their tumor removed, compared with 13.1% for those who didn’t,” explained Dr. Ruiterkamp during a press briefing. This 5-year survival difference was highly significant (P < .0001).

In the Netherlands, 1 of 9 women are diagnosed with breast cancer, and of this cohort, 3% to 10% have distant metastases at the time of their diagnosis. Generally, advanced-stage breast cancer is treated palliatively, and the primary tumor is removed only if it is symptomatic, Dr. Ruiterkamp said.

However, recent data suggest that removing the primary tumor could have a beneficial effect on outcome and extend survival. In a retrospective study, Dr. Ruiterkamp and colleagues analyzed the impact that surgical resection had on patient survival, after accounting for potential confounders such as age and associated comorbidities.

A total of 15,769 women were diagnosed with breast cancer in the south of the Netherlands between 1993 and 2004. Of this group, 728 patients had distant metastases at their initial diagnosis, representing 5% of all breast cancer patients in that region of the country. Approximately 40% of the patients with advanced-stage disease had undergone surgical removal of the primary tumor.

The researchers conducted stratified analyses to compare surgically and nonsurgically treated patients in subgroups that were defined by factors such as age, T-classification, comorbidity, and the number of metastatic sites. In addition, a multivariate analysis was performed to evaluate the independent contribution that surgery might have had.

The multivariate analysis showed surgery to be an independent prognostic factor for overall survival, after adjustment for age, period of diagnosis, T-classification, comorbidity, number of metastatic sites, use of locoregional radiotherapy, and use of systemic treatments.

Currently, the researchers are reviewing medical charts of selected patients and looking at factors such as the type of surgery that was performed, information about surgical margins, and whether lymph node dissection had taken place. This information will help find a biologic explanation for these results, she said.

“When we do the chart review, maybe we can also find out the reasons for having the surgery,” she added.

Although these results are interesting, José Baselga, MD, president of ESMO, pointed out that surgical removal of the primary tumor is not commonly done in this patient population. “That is the bias of the study,” he told Medscape Oncology when approached for independent comment.

The primary tumor is usually removed for 1 of 2 reasons, he said. “One is if the tumor is causing complications and the second is if the patient asks for it to be removed. In the latter case, the woman may be doing well and would like to remove the tumor.”

It might be that the primary tumor continues to launch cells into circulation, so the surgery is a self-sealing of the primary tumor, he added. “However, these data alone are not going to lead to a change in current practice. Randomized clinical trials are needed.”

Dr. Ruiterkamp agreed. Even multivariate analysis showed that surgery is an independent factor in overall survival. A randomized controlled trial should be performed to see if surgery really has any benefit, she concluded.

15th Congress of the European CanCer Organization (ECCO 15) and the 34th European Society for Medical Oncology (34th ESMO) Multidisciplinary Congress: Abstract 5005. Presented September 21, 2009.

Journalist

Roxanne Nelson

Roxanne Nelson is a staff journalist for Medscape Oncology.

SOME THOUGHTS IN A WEEK OF LIVING WITH ADVANCED BREAST CANCER
“You don’t get to choose how you’re going to die. Or when. You can only decide how you’re going to live. Now.”
Joan Baez

Monday – Opened the “Inside Story” and there was yet another tale about one of us achieving a lifetime goal. It was easy to be happy for that adventurous person and to some extent, be an armchair traveller for the time of reading. However, what I have realised lately is that I have not been able to gain much solace from wonderful past deeds done, especially when my body is being challenged in some way by the cancer itself or a treatment regime. It’s hard to believe but at times I have been unable to plan or even participate in a dream trip. This was where my husband came in handy – his way of coping with my health challenge was to plan “adventures” for us, so I went along for the ride! Otherwise, I’ve decided it is OK to live in the present and do the best I can.
Tuesday – Today I connected by phone to the Brisbane based Group for Women with Advanced Breast Cancer. It was good to catch up with how everyone is faring and today was a great one as one of our group who is 25 has managed to re-enter the workforce and is coping well while still receiving chemo. In contrast, as hard as it is, at 59 years of age, I’ve decided to not re-register for casual teaching as my energy levels are not high enough for the hurly-burly of school. My daughter is in this robust environment of education and often communicates her enjoyment of her work, and this keeps me in contact with this world I’ve decided to farewell.
Wednesday – Thinking of farewells, one of the women yesterday was rueful of the fact she couldn’t discuss end stage matters such as funerals with any of her support network. My thoughts, unuttered, were “Careful what you wish for as you might get it!” What happened to me was that, until recently, after living with the ups and downs of advanced breast cancer for seven years, I talked with friends for the first time of the terminal nature of this health challenge of mine. Then, just the other day, one of my friends handed me a card her friend had written to me.  I had met this woman on occasion when she visited from down south. Opening the card, I read words of farewell and I caught myself wondering where she was going, and why she was telling me, until reading further it dawned on me it was a goodbye to me who was about to supposedly pop off the planet  sooner rather than later! I guess it was a change from being told my positivity would aid in conquering the cancer.l
Thursday – While I was ill during a recent regime of chemotherapy, I thought “a little” about my funeral, and often remembered the various styles of memorials women we have lost in the group have had. One had even filmed her last words for her memorial service, as she waggishly said, “It’s my final chance to have the last word!” The irony is now as I recover more each day, that event seems so remote, so much so that my present position is that my funeral is not so much my rite of passage as belonging to those left – so maybe I’ll let this planning go too instead of tidying loose ends as usual!
Friday – Years ago, during some leave from work after the initial breast cancer I joined a “rut buster” embroidery group and have maintained intermittent contact with these women. I took my embroideries of the homes my husband and I have shared to show today. This brought to mind how we all wonder what will happen to our homes and possessions after our passing, and I smile every time I think of one of the advanced breast cancer group who is constructing a patchwork quilt – she is hoping after her passing no other woman would sleep under this with her husband!
Saturday – I was sad to find out today hair regrows at only half an inch a month so I will be wearing this grey fuzz for a while. No sympathy from one of my brothers who lives in Tassie – he is sending a tea cosy he no longer uses saying he can picture me in it and that it conveniently has two slits my ears can fit through! I’m glad I won’t have to avail myself of his suggested headwear as we are experiencing our tropical “winter” – warm dry perfect days.
Sunday – This was a day of rest I gave to my mind, so today all thoughts of breast cancer etc were banned!! We could choose to brunch on the boardwalk or just laze here in the garden and be lucky enough to see the glorious blue Ulysses butterfly flutter by.  Oh, on days like this it was good to be alive!

Fran.

Celebrating 10 years of the Advanced Breast Cancer Group!

This May marked the 10th anniversary of the Advanced Breast Cancer Group, which began in May 1999 as a weekly professionally led group in West End, and which has grown to a Statewide service providing support to women with metastatic or secondary cancer, their partners and families through weekly and monthly groups delivered face to face and by telephone, the website, www.advancedbreastcancergroup.org
national online forum, www.bcaus.org.au
and a DVD “You’re Not Alone”.

Highlights of the past 10 years include:

2001 commenced delivering the group by telephone in addition to face to face

2002 Grant from the Gambling Community Benefit Fund to evaluate the feasibility and benefits of the weekly face to face and telephone group.

2003 funding obtained from Queensland Health (Mental Health Branch) and a monthly group for Partners and Families provided.
2004 A Statewide video link up, using facilities of Women’s Health Queensland Wide, held to enable rural women and Brisbane women to connect names to faces.
2005 Preliminary outcomes from standardised measures presented to Dr David Spiegel’s team at Stanford University, California.

2006 Launch of website for the service www.advancedbreastcancergroup.org by Anna Bligh, then Deputy Premier of Queensland.
2006 Presented 12 month outcomes to the Society for Psychotherapy Research Conference in Edinburgh.
2007Embarked on making a documentary

2008 Publication of article in Journal of Counselling and Psychotherapy Research on clinical effectiveness of group.

2008 Launch of the DVD resource “You’re not alone: a film about living with secondary breast cancer”

2008 Partnered with the Aussie Breast Cancer Forum www.bcaus.org.au

2008 Presented poster on 2 year outcomes to COSA conference in Sydney.

In ten years this tiny organisation has developed from providing a service to a small number of women in consulting rooms in West End, to reaching many thousands of women around the country. We would like to thank all those who have supported us along the way, and hope for your continued support in the future.

	Mary O’Brien and Pia Hirsch Project Managers & group therapists
	Tom O’Brien, Supervisor
	Tina Gardiner, Administration Officer Jill Harris, Research Assistant

Click here to download the poster.

Some of the following strategies were things that women had worked out for themselves over time, some came from links with other women with advanced cancer, and some were a modification of what women had found in resources about early cancer:

a) Honesty:
Honesty and trust were big issues. The women all felt that if they weren’t honest, even if things were difficult, children would be more stressed and uncertain. While tempting to downplay things, secrets were seen as making things more frightening for children because they guessed about things, often imagining them to be worse than they really were.

b) Staging information:
Especially for younger children, women were aware that their children’s needs for information changed over time. For very young children, talking about something that might happen many months away was not helpful. Women said that they needed to update things for their children if their health changed, and also to give them information in amounts they could understand.

c) Routine:
Having some structure and routine was seen as very important, as it made children feel safer, and more grounded. Women felt that it gave the children some confidence about coping with life, although routine was often difficult because of changing treatments.

d) Involvement of children in treatment:
The attitude of women about this was remarkably consistent. Women felt that excluding children made it more likely that they would imagine the worst. Although it can be upsetting, it is also about treating them with respect and allowing them to see what is happening.

e) Getting support for yourself:
Women found it helpful to connect with others facing advanced cancer, often through a support group. Generally this was seen as a very precious thing, but it could also be painful if other women in the group became sick. Several women felt that over the years they had tended to downplay distress or concerns so that others around them wouldn’t be upset, but it could be quite liberating to admit that things were tough and allow people to be supportive. The big message from women was that you don’t have to be positive to protect other people.

f) Accepting help:
In addition to the need for emotional support, practical assistance was an important issue. Most women felt that getting help didn’t mean that they were less independent, in fact it helped them feel more in control about where they spent their energy, especially if they weren’t well.

g) Telling the school:
Not all of the children were of school-age. The mothers of school-aged children felt that if the school was supportive that would make things easier for their child. Sometimes the school counsellor was able to offer support for a child. The women also said how important it was to check on what other children at school were saying, so that they could correct mis-information.

The full reference which gives more details about the interviews is: Turner J, Clavarino A, Yates P, Hargraves M, Connors V, Hausmann, S. Development of a resource for parents with advanced cancer: What do parents want? Palliative and Supportive Care 2007;5:135-145.

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