Newly diagnosed - so lost and scared, please help

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Hello everyone Wave 

I am new here. 

My husband had been just diagnosed with prostate cancer - it is T3b N0 M0, Gleason score 3+4, his PSA is 92. He is 48.

The urologist (we are still waiting for an appointment with the oncologist) told us today that the panel of consultants debated my husband’s case and majority were concerned about the micro-metastasis, even though the scan didn’t pick up any. Apparently they concluded that it is “very likely”. It took our hope away. 

We have been also told that they won’t be able to completely cure the cancer, but they will be able to treat it, meaning keep it under control as long as possible. We still need to discuss the treatments options with the oncologist, but in our case they broadly they are:

1. Surgery, then radio and hormone treatment.

2. If he elects no surgery, radio and hormone treatment. 

He will be monitored for metastasis and if it is discovered, there will be options of “systemic” intervention, so broader chemo / immunotherapy as I understand it.

My questions are:

- How do I support him on this journey? We are both crushed, grieving for the life that won’t be, planning how to tell the news to his parents and our two young boys. But it’s him who is ill, and I have to be the rock. What support from your family did you find helpful? What are the dos and don’ts?

- How do we tell the boys? They are 12 and 13. 

- How do we change our diet to maximise his chances? Did you follow any particular nutrition or exercise plan?

- What questions do we ask the oncologist? What are the treatments available? 

- Last but not least, how do we not lose hope in all this? How do we keep sane? I have been reading that mindset is so important, but it’s such a rollercoaster. We thought initially that the cancer didn’t spread, based on N0 M0. The news of likely micro-metastasis turned our world upside down. We have been discussing that the consultants don’t really know, nothing showed on the PET, so maybe-just maybe-it hasn’t spread. Do you know anyone who has, or have you been in a similar situation?

I am sorry for the long post. I am nauseous from stress and have no tears left.

I will be grateful for any insights you might share.

Paulina

  • Thanks, guys. You are wonderful. Yes, we came through adversity before and we will go through this one too. The fear of being left alone? That one keeps me awake at night. I feel very tender toward him now, and very protective. Not overly though - will still kick him out to go on those walks, come rain or shine! Happy Monday everyone and thanks for turning me around this weekend x

  • Yes, the diagnosis does rather concentrate our minds and realise that every day  together is precious! I read about your own bereavements and both your courage and your concern for others shines through! Thank you!

  • I’m new to this thread, but both my wife and I have been following its progress. It doesn’t surprise me one little bit that this lovely bunch of people have reacted in such a generous and caring way to allay your fears. I, too have been brought to tears by such kindness.  I also find much solace reading the bio’s of the various contributors (most have them) to see how they have fared so far.  Don’t forget - we are all still here and the treatment and cures are obviously working. Don’t forget, too, that the science is still improving, so 5 years on, it will have advanced further. Something that appears insurmountable now, will probably have new alternative treatment in the future.  Stay strong Paulina and, again, welcome to our gang!

  • Thank you, Alpine Wanderer. Looks like we have been both crying for the same reason - kindness of this group Blush Yes, the treatment is clearly working and we are all still here. I have been relaying the discussion on this thread to my husband and he is taking in the advice (we are just back from a walk) and - slowly - the solace stemming from the courage of this group and the hope offered by new research. X

  • Oh, another thing.  Head over to a site called https://pcri.org/

    I found it to be very educational (it’s free) and reassuring with regards to radiotherapy.

    click on the link to watch their prostate cancer videos. Others on this site have done so, and have commented on their usefulness.  Hope that helps

  • Thanks a lot, Alpine Wanderer! This is gold, so much information and research! Much, much appreciated x

  • Hi Paulina - yes, I thought you would find the videos  interesting Slight smile - I like your description of “gold” Joy 

    I love the serenity of the interview setting and the clarity of explanations.  Alex and Dr Sholtz are so engaging and kind.  Quality of life is uppermost too.  Although based in the USA, the advice has a direct correlation to UK treatment pathways.  I worked my way through all the videos (including dozens of their question and answer sessions - don’t worry, most of those is only 4 - 9 mins long).

    I always feel calm when I’m watching them talk - it seems to bring some perspective - I hope they restore your faith in medicine - your other half is relatively young and he is strong enough to live for decades with the right treatment. Don’t forget - new treatments are coming on tap all the time!  Enjoy browsing through the PCRI site and let me know if you have any questions. 

    I am glad that I have provided a beacon of light and hope x

  • your other half is relatively young and he is strong enough to live for decades with the right treatment

    I am hoping for this with all my heart. Starting to watch now… I have also seen they have information on nutrition, this goes right up my street because I know I can influence at least what he puts into his body and maybe that will help together with medicine. 

  • Nutrition can only help Paulina.

    I try and eat very little red meat, not even too much chicken.

    Cut down on dairy, biscuits cakes. White bread/rice .

    I concentrate on fruit, veg, fish , nuts., sugar free cereal or porridge.

    Virtually no sweeties/takeaways 

    Sounds grim I know but u get used to it and if it helps your health generally anyway them worth it

    Steve

  • Hi AW,

    I am totally hooked on these videos too they are brilliant! Maybe should put a New link on its own page as well they are "GOLD!" They are my 3am can't sleep go to.

    L