Disappointing news - cancer found in lymph node

Email this conversation Print this conversation

User

Posted 01 Oct 2021 at 20:23

Thanks a lot guys for the speedy replies - really appreciated. Doctors here in HK are very good technically but empathy isn't exactly a strong point, so my Urologist literally spent 10-15 minutes giving me the news then shooed me out of his office giving me some names of Oncologists to contact (!).

So sorry to hear that some of you went through surgery and then also needed RT.. Looking back, would you have preferred to skip RP and go straight to RT or as you say is it better to remove the whole prostate anyway ? I think 12 of 14 cores came back positive in my case (almost all Gleason 3) but I do have one big lesion with GL4 which is starting to escape the capsule which I am sure is the culprit for my cancer spreading to lymph nodes..

My urologist said there's no point in removing my prostate given this diagnosis and radiotherapy would be my next step.

Has anyone had SBRT to treat cancer that has spread to Lymph nodes, etc ? I would love to get a shorter course of treatment if possible as work here is pretty hectic and I'd like to stay as active as possible. Currently feeling great of course, playing sports multiple times a week which makes the diagnosis all the more harder to believe, but I'm sure I'm not alone in this regard... For those that have had RT, how much did it take out of you and how are you feeling physically after treatment ?

Thanks again, and hope everyone is having a decent weekend at least :)

- Jonathan

User

Posted 02 Oct 2021 at 00:04

I don't want to cause any distress but I think you should prepare yourself emotionally for the oncologist saying that you are incurable. That is significant lymph node involvement - they may be able to offer radiotherapy to a wider area of the pelvis to capture a couple of lymph nodes but I will be surprised if they can get all three. There is also a chance that even if they can zap the three identified nodes, it will pop up elsewhere - cancer in the upper iliac nodes is usually considered to be metastatic.

There is little point having your prostate removed now - all you will achieve is a) unpleasant side effects when you will be wanting to help your wife with a new baby and b) delaying radiotherapy (if that is what the onco does offer).

If you were in the UK, the most up to date hospitals would probably be offering you hormone treatment combined with enzalutimide, docetaxel or apalutimide and then possibly radiotherapy in 3-6 months.

Also worth pointing out that the cancer doesn't escape from the prostate (T3) and then jump to the lymph nodes (N1); it doesn't work like that. The T3 means that the cancer has escaped the gland and is invading surrounding tissue ... like a bad orange will start to go mouldy and then black on the outside of the peel. Positive lymph nodes are because the cancer is moving through the lymphatic system - the rotten juice from the orange has dripped onto a bunch of grapes nearby.

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

User

Posted 02 Oct 2021 at 02:57

Thanks Lyn.. appreciated, will keep you posted as to how I get on..

User

Posted 02 Oct 2021 at 13:43

So I’m not going to pretend to know where your affected lymph nodes are as I don’t, and I can see Lyn has great knowledge and experience of this disease so can advise you so much better. Therefore maybe it’s not as simple as this but can the nodes not be removed?

I get that it must be in your lymphatic system but we’re definitely taking the chance that removing them might just do the trick. We know it is so likely that ART will follow and will get ready for that.

My grandmother at 80 had breast cancer, she had a mastectomy and they took 3 of her nodes under her arm (just in case) and it turned out 2 of the 3 had cancer. She had no further treatment and is now 94 and had no other problems with it so far.

I know her story isn’t going to be the same for everyone but we’re certainly living in hope and being positive that it could be the same for us.

I was looking through one of the other posts recently and someone (thanks to whoever this was) posted a video link to a pc seminar with a doctor…he was talking about oligometastasis and how opportunities to potentially cure were being missed even if it has spread. (Definitely worth a look) I do sometimes feel like I’m clutching at straws but I want to believe and be positive that we can overcome this and that’s what gets me through.

We’re never going to know if we’ve made the correct decision about opting for surgery but I do know we have gone with our gut and we’ll have done everything we possibly could to try and make a difference, so therefore we can’t have any regrets.

My husband as I said is older than you and has retired so the worries of work etc and recovery time are not the same, so I know this can make a difference.

You obviously have so much to be positive about having a new baby on the way. I really wish you well with whatever you decide.

Edited by member 02 Oct 2021 at 13:54 | Reason: Spacing

User

Posted 02 Oct 2021 at 13:56

Sorry forgot I couldn’t mention doctors names!! If you want to see the video though I will try and find the link

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.