The Live Better With cancer community forum is an incredible family – every day you share emotional support and help each other with practical tips and advice. Here’s our roundup of some of the latest forum discussions…
Why PSA testing matters for men
It’s always good to hear from members who may not have posted for a while, especially when they share updates on their treatment or progress. Mark, for example, joined the community forum back in April, a few months after he was diagnosed with and successfully treated for prostate cancer. In his first post, Mark highlighted the importance of PSA tests for men and the fact that, often, these are not offered unless asked for – and even then one might need to press one’s case:
‘My journey started with back pain which was been put down to a back injury. After a friend of mine had been diagnosed with prostate cancer he pushed me to get a PSA test. As my back was getting worse I had a full health check but had to ask for a PSA test and was told it is not normally done without symptoms to suggest prostate issues. In short after being tested I was found to have a prostate cancer.’
Mark’s experience resonated for community member Rob (RobertA):
‘I find it really frustrating that many doctors are still reluctant to do a PSA which is just a simple blood test. I had no early symptoms whatsoever, but by the time I was diagnosed, the cancer had spread into my seminal vesicles and a lymph node and any further delay and I could have been facing bone involvement. Because the cancer had spread, I did not have the op - I had radiation therapy and I am now on long term androgen deprivation treatment (ADT).’
Many men - and their loved ones - will share that frustration, especially given the rising rates of prostate cancer, the fact that it can be successfully treated, especially if caught early, and that as tests go, PSA testing costs relatively little and is not likely to break medical practice budgets.
So, it was good to hear from Mark again this month. His robotic prostatectomy seems to have been successful and, despite having to grapple with some unpleasant aspects of post-surgical treatment, everything now seems to be going in the right direction for him:
‘I am now awaiting my second check up which my PSA will be checked again my post operation results where 0.008 fingers crossed that stays there.’
We’re very pleased for Mark that things are going well – long may this continue. And, as Rob says:
‘I am constantly telling men and their wives how important the PSA test is for men, especially after the age of 50. I do get some strange looks but if we can get this message home as your friend did, it will be worth it. Thanks again for letting us know how you are getting on. Reading about your experience will be really helpful to others.’
When it comes to cancer, it really is good to share and your experience might prove to be a lifeline for someone else. You can read Mark’s story and the full thread here.
Genetic testing and a family history of breast cancer
Testing of a different kind was the subject of Lou’s (sunshinedaff) post:
‘When I was diagnosed with breast cancer in 2015, I was offered genetic testing as cancer, and breast cancer had been very active in my family. My concern was for my two daughters and for their future health and well-being.
‘I was tested for the BRCA1/2 gene, which thankfully came back as negative. Wonderful you may think but at the time I still had thoughts that there must be something in our genetic makeup for breast cancer especially to have such a stronghold in my family line.
‘We were told at the time, that there were other genes but they were not tested, so BRCA1/2 are the only ones looked for. The advice given was for my daughters to seek screening from the age of 30.’
We were so sorry to learn that not only had Lou already lost a sister to breast cancer but another sister has recently been diagnosed with the same disease and will undergo BRCA1/2 testing.
Lou wanted to know if any other members had similar cancer histories in their families. The response to her story illustrates the way in which forum members make an effort to offer support and encouragement, whether or not they have shared the same experience. Jackie (jacksprat-x1), for example, said:
‘Naturally you must be devastated to hear this news, for your sister, and with your family history of this awful disease, for your two young daughters. I hope that the researchers/medical people will have the information that they need to genetically test for other genes by the time that your daughters are tested at 30. I can only imagine how you feel to have this unsettling news as you know how difficult it is going through this treatment yourself and also the other side of the spectrum, supporting family members who are going through this awful time. I am sure that you will be a great support to your sister and will have much knowledge and advice to pass on.
‘You have done so well to get where you are and if your sister is like you she will fight this and keep strong and positive.’
Jackie offered to be available by phone should Lou find this helpful. She also mentioned some of the activities she’s involved in that have helped her and which continue to lift her spirits and help her to enjoy life – a reminder of how important this is for people living with cancer or the effects of cancer treatment:
‘I am going to sing All Around my Hat with Norman, Anne and Nigel tonight at Folk Club. It’s so wonderful to be doing good things again. We are also doing some Irish Jigs too! I have been to my Hope Course at MacMillan today. Met some lovely ladies, mainly breast cancer who are doing very well.’
Music works for Rob too and, as his comments show, having cancer doesn’t mean that you lose your sense of humour:
‘Haha, I know All Around my Hat. ...Do be careful with those Irish jigs though and don't be tempted to join in the dancing until you have fully recovered…One of our guys is Irish as it happens and he has written a great song called Going Home. He has tasked me with writing and playing some backing music for it, which I am doing and I am really excited about it.
‘I have also signed up for a Hope course which starts next week. It is a six-week course and I am looking forward to it. What a pity that men do not seem to join in to these events. I am sure they would benefit. Ah well, I don't mind being the thorn amongst the roses.’
Do you have a family history of breast cancer or do you know someone who has? If so, do read more about Lou’s experience of genetic testing (and the full thread) here.
Karin Seiger on patient advocates
As well as our online community forum discussions, did you know that Live Better With has a panel of cancer experts who can answer your questions on many aspects of cancer and cancer treatment? Cancer counselling specialist Karin Sieger also hosts an excellent podcast for people diagnosed or living with cancer and its aftermath. This month, Karin shared details of the most recent edition, which focused on the valuable role of patient advocates:
‘In my latest podcast interview for "Cancer and You" I speak with patient advocate Siobhán Freeney. She has been treated for breast cancer before and now advocates to raise awareness about the impact of dense breasts on mammograms. In our conversation we talk about that, as well as about her path to becoming an advocate and her top tips for you, if you are interested.’
Cancer patients often say that they feel the need to give something back, especially once their treatment has finished; becoming a patient advocate is a very effective way of doing this. It’s worth listening to the podcast to see if this is something that appeals to you.
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