My sons - what should I do?

Hi Mandrose, and welcome, I'm sorry to hear your prognosis, one we share, as well as our love for our kids, as for genetic testing, the Germline test is available on the NHS, and because of your familial link, you should be a priority and as such regular PSA tests should follow, but I'm not sure if there are age restrictions and your boys may have to wait a few  years for them,I may be wrong, and I can understand your worries, if your eldest knew he had the gene mutation, a difficult decision for you, I can say it's very rare for anyone under 50 to get prostate cancer and regular testing will hopefully mean IF prostate cancer is detected it will be caught early and treated. Mandrose. I'm also on the living with incurable cancer forum, where many of us have kids of all ages who we worry about when we're gone, your always welcome.

Eddie xx 

Hello Mandy (Mandrose) 

A warm welcome to our little part of the Community - I am Brian one of the Community Champions on the Community I also have prostate cancer.

First off, well done for raising two children by yourself, it's hard enough when there are two of you so I can see you are a very caring mother. 

* As to the PSA tests, personally in view of the family history I would ask for them to be done now each year - if the GP practice refuse (on age - NHS guidelines), you can get them done from private providers for a minimalist cost. This should give both you and them piece of mind. (just in case you aren't aware it's a blood test - not the "finger up the bum test" or digital rectal examination to be precise).

* As to should both children have a genetic test, the answer is a "YES" and here's a link to help you:

NHS - Genetic Testing Including Prostate Cancer

I do hope this helps. Please come back to me or the group with any other questions.

I hope you are doing OK with the Lung cancer journey - I know one of my friends Chellesimo is the Community Champion on that group and she will be happy to provide any support you need.

Indeed as I was typing this I've just seen Eddie's (eddiel) post above and here's a link you may find of use, one he's recommended for you:

 Living with incurable cancer forum - patients only 

Best wishes - Brian.

Thank you so much Eddie, I’m going to think long & hard about what would be best for them. I didn’t know about that forum, thanks for mentioning as I will definitely join as I have so many worries x

Thank you Brian, I’ll have a good read about the genetic screening & I’m sure it will help with the decision of whether to mention it to my sons now or wait for a while. 

im going to join the Living with incurable cancer forum, it sounds like just what I need!

I’ve been quite lucky that since I was diagnosed just over 2 years ago I’ve been stable while having immunotherapy. Unfortunately, the last 2 scans I’ve had have shown progression and I’ve just had a PET scan to see if it’s spread outside my chest.  Results go to MDT board tomorrow & I’ll find out treatment plan on 13th. 

no matter where the cancer, it’s a horrible disease.

I wish you & every one else in this forum all the best x

Hello Mandrose 

You are welcome - I wish you well on your journey - you are always welcome  here- we do Prostate cancer - but we are also like a "family" too so if you need to come back for advice, or just a chat, we do rants and vents too - we are always here for you.

It doesn't matter what cancer you have  you have - we all have that "bond" cancer.

Best wishes - Brian

Hi Mandrose,  you are welcome my friend, it's so tough thinking of the kids when we're gone, like yours mine are grown up, 3 girls and a boy 52yo to 34yo, my eldest has been through cancer twice,  just  4 more chemo cycles, and we hope cured. Mandrose, on my kids mums side of the family ovarian cancer is rife, responsible for most of the deaths  to their side of the family,  and all the girls have the CA125 blood test twice a year privately, as waiting for symptoms, a little like prostate cancer, is risky. best wishes to you and your family 

Eddie xx 

Hello Mandrose, I’m sorry to be late replying to you and also to hear about your own diagnosis. I hope you are getting all the care and support that you need.

i can tell you about our own experience of ‘genetics’ and hope it helps.

Almost as soon as my husband was diagnosed in 2022 with prostate cancer, there were suggestions we both should have genetic counselling for the sake of our children. This was due to a high incidence of both prostate and breast cancer in his close family. My paternal aunt and maternal great aunt died of breast cancer but this was not classed as significant. We always knew that my husband was at risk but, before his diagnosis, my husband was at that time, we were told he was the ‘marker’ for our children as all the affected family members were dead. I’m not sure whether this has changed? However, he had regular PSA tests for years from about age 50 with a slow rise. I think now that they should have done more sooner and not wait some 25 years but diagnostics and treatments have drastically improved. It does show though how PC can progress so slowly!

anyway we first had to be counselled. We were told that although they have identified some genetic mutations that cause a higher risk of breast and prostate cancer, there might be many more they don’t yet know about. This means that they cannot provide certainty of risk or no risk.

We were asked whether we wanted our adult children to be informed of their high risk if any genetic susceptibility was identified. We immediately said ‘yes’ but read on and you will see how that panned out!

my husband gave a blood sample and we had to wait about 6 very anxious months for the results. I got more edgy as we got nearer to the results. I realised that if they had detected faulty genes, then our beautiful daughters would have to face a difficult decision about whether or not to have a double mastectomy. This was breaking my heart! Also, I knew that the impact on our sons could have been life changing. I asked them all if they wanted to know and they all said yes.

The results were negative to all known genes! What a relief! My husband is to be tested every 5 years as there could be more knowledge and developments in the future. All our children were sent a letter to take to their GP. Our daughters have annual mammograms. Our sons are to have annual PSAs - they are all in their 40s. One son has steadfastly refused to be tested! This has broken my heart! He has sons of his own! The others all turn up for their tests.

so, what I’m trying to say is that there is anxiety associated both with and without genetic  testing! We did not really realise the emotions involved in it. Would I recommend it? I would definitely advise your sons to be sure to have annual PSA tests from age 45 years. I’m less confident about the certainty of genetic testing but that might be needed to get a GP to do annual PSAxtests before the age of 50?

I do hope your sons continue to live long, happy and cancer free lives which, I know, is your biggest wish for them. I also send you my love and best wishes in dealing with your own illness. Xxx

Thank you so much worried wife, that really has helped me. 

I think if they have the genetic test, my oldest son would find it extremely difficult if it showed they were higher risk. When their dad died of a sudden heart attack 17 years ago, it took a long time and many tests including scans to reassure him he wasn’t more at risk than anyone else. 

i do think he could cope with having a PSA test yearly though, as that’s something tangible he can arrange & not fixate on. 

I think because I’m having a bit of a blip with my cancer, I worry I’ll leave it too late to say as I definitely don’t want either of them to go through the big C if a yearly blood test  could pick it up quickly. 

Thank you so much for the good wishes for all of us, we’re very close & for the last 2 years the 3 of us have had a fantastic week away at centre Parcs on our own. We’ve all loved making memories &I’ve already booked for this year as it keeps me going ️ xx