Recurrent Cancer in Lymph Nodes

User

Posted 25 Jan 2023 at 20:24

I was initially diagnosed in 2017 and had 35 sessions of radiotherapy followed by 3 years of hormone therapy. I also had some lymph nodes removed but no prostatectomy.

Since the hormone therapy ended 2 years ago my PSA has slowly climbed until 6 months ago it 1.8 and then in December, it was 5.6.

I have had MRI, Bone and CT scans and was informed today that I have recurrence in the lymph nodes.

I have an appointment for next week when I will be put back on hormone therapy and have been referred to oncology where I have been told that I will probably be given medical treatment (Chemo, I guess).

I know that my cancer is incurable, and that the treatment that I receive will be aimed at controlling the spread.

Just wondered if anyone else has been on a similar journey and, although I am aware that we are all different, what the outcomes and or prognosis might be.

User

Posted 25 Jan 2023 at 23:39

Hi,

I read your previous post and think Dave touched on this when he said hormones often last 3 or 4 years then there are other drugs that keep extending it possibly to 10 or even 15yrs.

Everyone is different, some do better than others, and new treatments come out. Also different combinations of hormones and chemo.

Do you know for certain that the Lymphs can't be treated with SABR or RT which might do better for you.

User

Posted 25 Jan 2023 at 23:56

Thanks for your reply Peter. I only had a quick telephone conversation today. I guess I'll find out more when I go next week. But I was told it would be either Hormone Treatment, Medical Oncology or both. Looks like they have me down for both but, as I say, I will find out more at my appointment.

User

Posted 26 Jan 2023 at 00:34

Depends on your onco a bit but a hospital ill generally only talk to you about the treatments they have available. Certainly no harm in you asking whether the lymph node involvement is widespread or limited and, if limited, is it in the pelvic area where no more RT can be delivered or is SABR ( a type of RT targeted just at the bits where it has spread) a possibility. If there are only limited affected nodes but your hospital doesn't do SABR, ask for a referral to one that does, even if just for a second opinion.

If SABR isn't an option, your prognosis is probably still many years of good living - we have a few men here of 15 years and even coming up to 20 years with similar story to yours.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Jan 2023 at 07:24

Thanks for that info Lynn.

I think SABR is available as it was mentioned at an earlier appointment. It may be as you suggest, that it is too widespread, I guess I will find out when I attend the hospital next week.

Thanks also for the positive prognosis. That was my main reason for posting at this time. I wanted to have some idea of what I need to prepare my wife and daughter for before we attend next week.

User

Posted 26 Jan 2023 at 16:32

I too have had a biochemical recurrence where the cancer has spread to my lymph nodes in the lumbar region. I re-start HT (Zoladex) last May when my PSA had reached 12ng/ml. My PSA quickly fell to its current level of 0.1 ng/ml. If /when my PSA starts to rise again I am likely to have enzalutamide added to the hormone therapy. You may be offered the same regimen.

Tom

User

Posted 26 Jan 2023 at 18:02

Thanks Tom. That is really useful information. Hope the PSA stays low for you.

User

Posted 26 Jan 2023 at 21:53

Originally Posted by: Online Community Member

Thanks also for the positive prognosis. That was my main reason for posting at this time. I wanted to have some idea of what I need to prepare my wife and daughter for before we attend next week.

You may be incurable (depending on whether or not SABR is available) but you are not terminal. A prognosis is therefore very unlikely to be offered unless you ask, and if you do ask, the answer is likely to be "somewhere between 5 - 20 years" although more and more now, we see men doing at least 10 years

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Feb 2023 at 10:36

So, had my appointment yesterday and as suspected the cancer is in the lymph nodes but, at the moment, restricted to the pelvic area. Surgery and RT are not possible so started on life long HT this morning. Of course, I'm not looking forward to the usual side effects if they are the same as last time but, as I have mentioned in other posts, I did also experience some positive side effects. So if they come back it's not all bad. I have an appointment in a few weeks time with oncology where we will discuss whether to start chemo now or whether to hold it in reserve for further down the line. I will update when I know.

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