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Post Surgery - Lymph Node Removal - Lymph,node,lymphoedema

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User

Posted 21 Jan 2015 at 09:06

Hi All,

I had my prostate removed a year ago. A few months later I had radiotherapy, which finished 6 months ago. My PSA has continued to rise throughout. I've now been told that one of the possible next treatments is lymph node removal (depending on the results of a choline PET Scan).

Does anyone know what is involved with lymph node removal? What are the likely chances of that being a "cure"? What are the possible side effects? How big is the operation? Any info would be welcome.

Thanks

Jim

User

Posted 21 Jan 2015 at 20:31

I think it would depend very much which nodes. Prostate drains ( therefore P.Ca spread ) through internal and external iliac nodes to common iliac nodes to pre-aortic nodes.There are also Obturator nodes in that system. Those closest to prostate presumably got R/T zapped ?

Fluid build-up ( Lymphedema ) is possible which should settle after a while & may not even happen. Occasionally it becomes a long-term problem I believe.

Big question is whether P.Ca. is visible in some ( removed via surgery ) but P.Ca. has moved up the chain but not detected by scans at this time. So impossible to judge I'd say regarding eradication. Some feel adding HT or using at first sign of psa rise might knock tiny amounts of P.Ca into submission. I'm sure Onco would discuss that with you.

User

Posted 21 Jan 2015 at 20:58

I would ask exactly which nodes they want to remove. Stan had a few removed from the pelvic area and honestly, it was like RP - he was in hospital for 5 days, and had a wound drain and catheter for a week. However, no problems afterwards with lymphoedema or recovery was fairly swift considering he was 80 :-)

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

User

Posted 21 Jan 2015 at 22:31

Hi Jim

I am in a similar position as regards PSA increasing after RP and RT, so I will be having a PET/CT scan if the rise continues to hopefully pinpoint where the spread is. I have already undergone a PET/CT in Munich prior to my RT which showed spread at that time but even these scans have their limitations as no scan at present is foolproof. I had 32 lymph nodes removed during RP which is excessive but I don't have any problems at all thank god, but we are all different I suppose it is down to where the nodes are removed from, which may determine your risk so once you know where the spread is your urologist will be able to point out the possible risks. If the spread is only in the nodes removed then yes it is possible to reduce the PSA to undetectable but is not a given, as there might be microscopic spread elsewhere that the scan can't pick up.

Good Luck

Roy

User

Posted 21 Jan 2015 at 23:32

Thanks for your replies. They've at least given me more of an idea and will help me get my head round what to ask the oncologist next week.

User

Posted 22 Jan 2015 at 10:01

One thing that hasn't been mentioned and happened to me is that when a node is removed the area is 'sealed' (not sure if that is the right word) using heat. Sometimes the heat can damage a nerve which then takes quite some time to recover if it does at all. I have some numbness in my right upper thigh which is still problematic after 9 months but I believe is improving.

User

Posted 22 Jan 2015 at 12:57

I am about to go for a PET scan as my post-salvage RT PSA have not dropped and in fact last test showed a slight rise (though still only 0.7 )

Is it customary for the PET scan to be whole body or merely the area of interest?

My Onco spoke of asking for what sounded like a 'rectal(something or other)' scan but he has also spoken of a possible spread being anywhere in the body.

As I am self-funding the private scan and it's likely to be a one-off, I'd like to obtain the maximum effectiveness.

I'd be grateful for any views or experiences of this, especially in regard to scanning the whole body or prostate area.

Thanks

Dave

Not "Why Me?" but "Why Not Me"?

User

Posted 22 Jan 2015 at 22:59

Hi Dave

I also had to self fund my PET/CT Scan which I travelled to Munich for. Munich used a different radioactive agent to the Choline used in the UK and it seems to be more sensitive in picking low level spread. I would assume that they would scan the whole body as the spread could be anywhere, so if they only scan the abdominal area, they could miss it. I would have thought that a PSA of 0.7 would possibly be too low for the scan to show much though, my PSA was above 1 when I had mine.

Roy

Edited by member 22 Jan 2015 at 23:08 | Reason: Not specified

User

Posted 22 Mar 2015 at 09:26

Sorry for not replying sooner. I had my Choline PET Scan and that has now ruled out any lymph node removal. There are too many cancerous ones to be removed.

As for the PET Scan I had, I thought it was going to be whole body but it wasn't. It covered just the area between the bottom of my rib cage and the top of my legs and groin area.

User

Posted 22 Mar 2015 at 10:34

Hi Jay

It sounds like you have a good oncologist having read your profile. Further RT to the nodes does sound radical and not something I knew was possible if you've been zapped already.

How many grys did you have the first time round? Developments in treatment like your oncol is suggesting is useful to know for men in similar situations.

Here's hoping that a cure is still on the table or at the very least many years of good quality life

Bri

Edited by member 22 Mar 2015 at 10:35 | Reason: Not specified

User

Posted 22 Mar 2015 at 11:30

I think I had 62 greys first time round. I'll ask this week.

User

Posted 22 Mar 2015 at 14:39

That sounds about right for adjuvent or salvage. I think I had 64grys over 20 sessions.

Keep us updated and good luck

Bri

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