European Prostate Cancer Awareness Day calls for action; what did I learn?

The European Prostate Cancer Awareness Day (EPAD) aims to raise awareness and enhance knowledge of prostate cancer. Oncology specialists, patient advocates, politicians and policymakers gathered for EPAD20 online and in Brussels on 17 November 2020. I missed the live event but have been catching up with their videos/presentations. Some of the findings that I found interesting are below - scribbled notes as I tuned into these talks - big thanks to EPAD for letting people living with cancer join.

Listen in at: https://epad.uroweb.org/programme/recording-epad20/

Things have improved significantly since PSA was introduced

 

However 1 in 7 men in Europe will develop prostate cancer before they are 85.  Figures show in 2018 107,000 died from prostate cancer in Europe. 

 

Prostate cancer was said not to be a killing disease: “You will die with, not from prostate cancer”. Yet this is plainly not so true. It has been suggested that PSA testing was overused and led to over diagnosis and over treatment. Instead people with early diagnosis should have been offered Active Surveillance. This over diagnosis and treatment led to the anti-PSA propaganda - yes it is not a great measure but it has still helped with early detection that has led to less mortality. 

 

When there was less PSA testing it appears prostate cancer deaths increased. Prof. Hein Van Poppel in setting the scene to the conference challenged that much less was being done for prostate cancer than other cancers and asked why are we are letting this happen.

Prof. Monique J Roobol in her talk started with a quote from 1993 in the BMJ wrote: "About 50-60% of all cases of prostate cancer in the European Community present with obvious metastases or are locally too advanced for potentially curative management. Of those cancers that seem to be limited to the prostate clinically, 25-35% will have lymph node metastases. Of the remainder, another 25-35% will be too advanced for curative treatment and will turn out to be unresectable if surgery is attempted.” 

 

She went on to share the results of clinical trails saying that things "will hardly be different in 2021 and onwards if we do not act.”  She concluded:

• Data from pre-PSA era show that PCa is a disease often related to a lot of suffering over a considerable period
• 2 out of 3 men diagnosed with PCa died of their disease

We now know that: 

• Organized screening with the use of the PSA test reduces suffering and dying from PCa
• Potential harms ( unnecessary testing /over diagnosis and over treatment) can be largely avoided

Indeed the talks repeatedly concluded that early detection should be offered and can save lives. Are we doing enough? It seems not at the moment. As the Prof. Hein Van Poppel said in answer to a question, mortality is increasing in the UK due to the "propaganda against PSA testing" and GPs need to know that and we need to act. He goes onto "say early detection is likely to be the way out of it”.

When asked about prevention Monique J Roobol said it was research was still underway and that it was hard to know what can be done to prevent prostate cancer but we are aware of risk factors - mainly related to diet - particularly red meat being not good and tomatoes being good.

EUPROMS study - some surprises re quality of life after treatment

Key findings from nearly 3,000 responses in this study were highlighted by Mr. André Deschamps in his talk include:

Prostate Cancer is not an old mans disease; average age at diagnosis is 64. Nearly 30% are diagnosed before 60 and 76% before 70. 

 

Anxious and depressed; 42% of men who have been treated for prostate cancer are anxious or depressed to some extent at the time of the survey - with 15% extremely, severely or moderately impacted.

Sexual function; there was slightly more impact with radiotherapy than radical prostatectomy - both treatments impacted significantly but this research flies contrary previous thoughts that prostatectomy had worse outcomes re sexual function. Of huge concern was the overall some 28% have a big problem and 22% a moderate problem ie 50%!

Continence: prostatectomy was worse than radiotherapy and its seems after treatment (I think they mean any of the standard treatments) a whopping 37% of men use one or more incontinence pads every day.

The conclusion is that early detection is key and that active surveillance should be considered as the first treatment in order to ensure the best quality of life.

The Awareness Day also heard from November and their campaigns to raise awareness about early detection - see more re UK branch at: https://uk.movember.com/

Black Women Rising: new magazine

I recently got my copy of the wonderful 'Black Women Rising’ magazine - another opportunity by teh inspiring Leanne Pero and the gang at Black Women Rising to empower women of colour as they navigate their cancer journeys. There are also plans already under way for Black Men Rising.

The mission at Black Women Rising is to educate, inspire and bring opportunities for women from the BAME community, to connect with one another and share their stories, without fear or shame. As their website says; “As well as..generic injustices, the unhelpful myths and taboos surrounding cancer within the BAME community had ultimately stopped people from speaking out about their ordeals, leading to a lack of awareness and education within BAME households around cancer, its signs and symptoms. This ultimately led to the devastating outcomes of late stage diagnoses and higher mortality rates in some cancers than their white counterparts.”

Check out their podcasts

Black Women Rising have support groups and podcasts which I have mentioned in a previous blog - see here (i). This magazine will be another way to reach out. It covers loads with a look at the project, many voices from folk living with cancer, signs and symptoms, what to say to loved ones, hair, beauty, sex, gratitude, menopause, LGBTQI, genetics and so much more.

Options can be overwhelming

The magazine touches on lifestyle with Toral Shah talking nutrition and a section on exercise with Jonelle Lewis - from an integrative health perspective there is lots more evidence that could have been included around other stuff we can do to build our health. However I see one of the biggest challenges being about how not to  overwhelm people with too much info. 

 

In the recent ‘Your Life and Cancer’ online event with 40 plus global experts it was more than clear how much evidence is out there. Some options cost loads while others are almost no cost. But how do you choose? And how do you find what is right for you? 

The magazine focusing on nutrition and exercise is clearly a great place to start. However as I noted in the previous blog (mentioned above) (i), complementary medicine like conventional treatment does also not seem to be able to serve the BAME community in terms of people living with cancer.

That leads me to one of the sections in the magazine that I particularly liked - looking at what we can do as a community to help banish stigma. 

 

The graphic opposite covers some of the ways which are already underway. I know we can all do more. This magazine is certainly a great start - could they be available in oncology waiting rooms? How else can we help reach out?

 
See more and order your copy of the magazine at: https://www.blackwomenrisinguk.org/

 

Notes

 

(i) See my blog with links to Black Women Rising podcasts, support groups and a film of Leanne talking at Trew Fields with the equally inspiring late Saima Thompson:  https://myunexpectedguide.blogspot.com/2020/07/yes-to-life-stands-in-solidarity-with.html

(ii) https://www.yourlifeandcancer.com/