ECPC's member of the month May 2010 is:

CATHERINE DAHLSTRÖM (GYNSAM, SWEDEN)

My Organisation

Gynaecological Cancer Patients National Coalition, Gynsam

Gynsam aims to offer support to women with gynaecological cancer and also to work as a lobby group. It is a small organisation. Although about 3000 women are diagnosed with some form of gynaecological cancer each year in Sweden, we only have 650 members. There are a number of reasons for this: firstly the largest group, women who have had uterine cancer, have a very good prognosis and, since they are usually post-menopausal, they tend simply to put their patient identity behind them; there has been little publicity given to these kinds of cancer; secondly this is a disease that attacks the most intimate parts of the body producing feelings of shame or embarrassment, and the treatments leave many women feeling that they have lost an essential aspect of their femininity. In the case of younger women, of course, the loss of the womb and/or their fertility is an added sorrow. Another problem is that Gynsam receives no financial support from the authorities; funding is limited and everything has to be done on a voluntary basis. However the organisation is growing and we have recently formed a network for young women NYCK and are slowly but surely getting more attention.

What have we achieved so far? Gynsam, along with others, has lobbied successfully for the inclusion of vaccination against HPV (the virus which causes most cervix cancers) in the free inoculation programme for school children. We have also successfully taken part in a campaign to preserve gynaecological oncology as a branch of specialist medicine. Gynsam has the right to comment on government propositions regarding cancer care and we also work closely with specialists in the field. Gynsam recently organised a seminar, along with the foundation for cancer research, designed to spread information to non-specialists and politicians.

There is still plenty to do, however. Cancer treatment in Sweden is world class and results in terms of survival are excellent. On the other hand, budget constraints have meant that other aspects of care, access to hospital beds and rehabilitation programmes as well as psycho-social support have suffered. Now there are also indications of medical problems. Sweden used to top the European statistics for survival from gynaecological cancers, but we are now being overtaken by other nations. Since the future of gynaecological oncology was uncertain for a while, few younger people have trained for this and many specialists have recently retired. There is now a shortage of fully qualified gynaecological oncologists as well as of good surgeons. There is a general lack of pathologists and in some parts of the country patients have been refused drugs for financial reasons. Therefore we need to work tirelessly to assure that managers of hospitals and other health-care facilities as well as politicians are aware of the needs of gynaecological cancer patients and prioritise accordingly. There are signs that the Swedish health care system is moving from a paternalistic model – there is no patient rights legislation for instance – towards a more genuine interest in engaging with patient organisations. Sweden is about to implement a new strategy for cancer-care and we have provided the official responsible with necessary input. Let us hope that this leads to better practice.

My story

“I feel something” said my gynaecologist at my annual visit in the spring of 2003. “Come back in three months time and we’ll see if it is still there.” And of course it was. That was the beginning of a year of uncertainty and three operations in fairly rapid succession before I was seemingly in the clear – at least for the time being. One of the reasons that everything took so long was that I had an unusual form of ovarian cancer that can be hard to diagnose; my specimen had to go the rounds of the pathologists before they were certain that it was a sex-cord stromal tumour (granulose). Another complication was that a routine ex ray revealed a lesion on one of my lungs, which happily turned out to be quite harmless. From my point of view the waits gave me time both to pass through every kind of emotion from fear, anger and optimism to a kind of apathy and also to research the topic as far as I could. It also enabled me to find out how difficult it can be in Sweden to get in touch with a doctor or extract information about one’s disease – even though the regulations provide for informed consent.

I decided – on the basis of my researches – to turn down the offer of adjunctive chemo therapy, since it seemed uncertain that it would make any difference. My kind of cancer is so comparatively speaking rare that there are practically speaking no population based clinical studies. If these tumours are discovered before they spread, as in my case, the survival rate is good – at least for the first 10 years or so. It seemed to me then, at the age of 63, that I was more interested in avoiding the risk of damage caused by chemotherapy (especially “chemobrain”) than extending my life expectancy at any price. As a senior university lecturer and researcher used to exercising authority over others, I was fortunate to have had the strength and determination, as well as the fact-finding skills necessary to investigate and take control of my situation. It has always seemed strange to me that while individuals are free to make other existential choices – who to marry, what to work with, where to live – once ill they are expected to or themselves expect to submit to the decisions of others.

So far mine seems to have been a good decision: ever since the tumour was removed I have felt extremely well and full of energy. At a fairly early stage, I decided to put this energy to use by offering my services to the Gynaecological Cancer Patients National Coalition, Gynsam. It seems almost like an obligation to work on behalf of those women who are less used to fighting their corner. At present I am both on the board of local association in Stockholm and I am editor of the Coalition’s Journal where I can put my title to good use when recruiting contributors and employ my communication skills.

How to contact me

email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it or This e-mail address is being protected from spambots. You need JavaScript enabled to view it

website: http://www.gynsam.se/

See also our previous ECPC Members of the Month.