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Lymph Nodes- is there any point

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User

Posted 23 Dec 2023 at 19:35

Originally Posted by: Online Community Member

Lyn

Surely N0 relates to not being in the lymph nodes. I think your post suggests otherwise.

Thanks

Rory

Strictly speaking, N0 indicates that there are no mets in the lymph nodes. N1 indicates that there is cancer in the lymph nodes close to the prostate. M1a indicates that the cancer has metastasised to lymph nodes further afield. The problem is that we are seeing more and more commonly now that men with just one or two potentially affected nodes in the pelvis are being scored as N0 and offered treatment as if the nodes were not affected.

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

User

Posted 23 Dec 2023 at 22:16

Originally Posted by: Online Community Member

The problem is that we are seeing more and more commonly now that men with just one or two potentially affected nodes in the pelvis are being scored as N0 and offered treatment as if the nodes were not affected.

Surely that's a big problem??!!

Jules

User

Posted 23 Dec 2023 at 22:49

Hi Lyn

I was T3B N1 M0 and had full pelvic radiation, chemotherapy and hormone therapy.

That said, my PSA was 252 but the bone scan and full body scan were negative.

I was told there was a very significant risk of micro metastatic disease.

My report stated that only one lymph node was involved.

Edited by member 23 Dec 2023 at 22:50 | Reason: Not specified

User

Posted 24 Dec 2023 at 00:58

Originally Posted by: Online Community Member

Surely that's a big problem??!!

Jules

I think that depends on your perspective, Jules. From an NHS resources point of view, it means that more men are being offered RP despite knowing that there is a significant chance of needing adjuvant or salvage RT whereas, in the past, they would have been advised to have RT / HT straight off. From the patient's point of view, it could be a good thing or a bad thing - the man might be thrilled to get RP and it is successful (or removing the bulk appears to slow down progression) OR the man may not understand the significant risk of recurrence and is devastated when the RP doesn't get rid of it. Based on what I have seen here over the years, the good / bad effect seems to depend an awful lot on whether the urologist explains the risk properly or glosses over it.

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

User

Posted 24 Dec 2023 at 01:03

Originally Posted by: Online Community Member

Hi Lyn

I was T3B N1 M0 and had full pelvic radiation, chemotherapy and hormone therapy.

That said, my PSA was 252 but the bone scan and full body scan were negative.

I was told there was a very significant risk of micro metastatic disease.

My report stated that only one lymph node was involved.

Hi Roger, there may have been only one lymph node showing as affected on the scans but, as you will have realised, there is a possibility of micromets in many lymph nodes which may show themselves at some point in the future. That is pretty much what happened to Chris-J - the scans were clear for ages. I suppose it also matters whether your one lymph node was adjacent to the prostate or somewhere remote like under your armpit :-/ Either way, you have given it all barrels and will hopefully still be posting here in 10 years!

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

User

Posted 24 Dec 2023 at 01:07

My Oncologist certainly didn’t gloss over it!
when I asked him what my life expectancy was in the chemotherapy room, he shouted at me in public, as in… “ How do you expect me to know that “ I thought he might have some idea based on previous experience.

User

Posted 24 Dec 2023 at 01:11

Thanks Lyn.

Do you know if a prostatectomy is cheaper [for the NHS] than RT/HT treatment?

Jules

User

Posted 24 Dec 2023 at 02:07

Originally Posted by: Online Community Member

he shouted at me in public, as in… “ How do you expect me to know that “

I'm sorry to hear that happened to you, it's totally outrageous.

Jules

User

Posted 24 Dec 2023 at 03:43

Who does ",we" refer to Lynn are you involved in medical research?

Thanks

Rory

User

Posted 24 Dec 2023 at 09:41

Originally Posted by: Online Community Member

Surely that's a big problem??!!

Jules

Lyn I am assuming dh must’ve had micromets. He was told he had 2 very small tumours all contained in the prostate. Nothing in the lymph nodes. It took 5 years for psa to start to rise after brachy and 9 years before it started to rise quickly. I’m sure dh must be unusual in the fact there are still no mets in the lymph nodes near the prostate and the brachy worked as nothing in the prostate either.
How does it get to further nodes without being in the nearer nodes? Or is it just a case of they are too small to be picked by psma scan? Either way, I’m sure if he’d had his prostate removed we’d still be where we are now, unless he’d had nodes removed originally, maybe that would have worked. But we will never know that one. No point in thinking about it really. But I am interested to know how it got to further nodes and stayed quiet for all those years.

User

Posted 24 Dec 2023 at 10:11

My lymph node was in the pelvis

User

Posted 24 Dec 2023 at 12:22

I don’t know how many nodes dh has involved. They are in the navel area, which I’m assuming is still classed as pelvis, but none near the prostate. The paperwork also says a few lymph nodes in the posterior mediastinum. The consultant only said the lymph nodes were up near dh‘s belly button. But those ones are in his chest (according to google)

User

Posted 24 Dec 2023 at 16:09

Originally Posted by: Online Community Member

Thanks Lyn.

Do you know if a prostatectomy is cheaper [for the NHS] than RT/HT treatment?

Jules

RT/HT used to be more expensive, but with increasing use of hypofractionation, that might not be the case anymore. I haven't seen any figures since well before COVID.

We were told that LDR Brachytherapy was the most expensive operation the hospital does, mainly because of the number of different consultants required in theatre during the procedure. (IIRC, it was urology, oncology, and medical physics.)

Edited by member 24 Dec 2023 at 16:14 | Reason: Not specified

User

Posted 24 Dec 2023 at 16:17

Originally Posted by: Online Community Member

It was the most expensive operation the hospital does, mainly because of the number of different consultants required in theatre during the procedure. (IIRC, it was urology, oncology, and medical physics.)

It's December, so three wise men does seem appropriate.,

User

Posted 24 Dec 2023 at 18:05

I have just read your conversations about lymph nodes with interest.

My original PSA was 82 and MRI score T3bN0 M0 and Gleason score of 4+5=9

I've just had my first appointment with the Oncologist on Thursday and he didn't fill me with much confidence. He said I probably would be on Hormone therapy for 2 years and start Radiotherapy in February consisting of 4 weeks treatment. My wife asked him what areas would he be targeting with the radiotherapy and he just said the Prostate and seminal vesicles. I followed this by saying seeing as its an aggressive form of cancer wouldn't it be best to include the lymph nodes? He had a think about it and agreed that's probably best!!

I also said what about doing a PET scan because nearly 3 months had passed since the original scans and the cancer could have spread. He said it would have been a good idea earlier but now that Hormone therapy had started it wasn't necessary.

We made it aware that things have progressed slowly so far but now seem to moving on at a quicker pace. That was more or less it. Later in the day he called me and said he'd been reviewing my case again with a colleague and offered me a one off high doze of Brachytherapy at Christies in Manchester. I accepted this but thought he's only doing this because they haven't given me the best care.

The punch line is if we hadn't have pushed he wouldn't have included the lymph nodes in the radiotherapy.

User

Posted 25 Dec 2023 at 07:21

John

It seems to me that it's all a bit.of a lottery. I don't feel that I have had the best treatment. My lymph nodes have not been radiated, but that's just how it is. I have also noted that although my PSA is 0.34 after radiation and 12 months HT and the medics seem happy I cannot but note others down to levels significantly lower and often down from greater highs.

What can one do, not a lot other than enjoy each day. I love the positivity of all those who heroically declare that their cancer won't define them. My cancer may not have defined me but it has certainly changed my life. Happy Christmas ⛄.

Rory

User

Posted 25 Dec 2023 at 10:10

Thanks Rory. I love your positivity.

Merry Xmas to all on this site.

I thing I forgot to mention is that the Consultant said they don't have a PET scanner at Preston Hospital. I'm sure I've passed one on the way to the MRI scan. I can't believe a city like Preston doesn't have one.

User

Posted 25 Dec 2023 at 12:36

John

My hospital didn't have a PSMA scan either, but on a positive note Preston have a great football team and I am half way through a bottle of Barolo. All we need now is Allaho to win the King George at Kempton tomorrow!

Rory

Edited by member 25 Dec 2023 at 13:13 | Reason: Not specified

User

Posted 25 Dec 2023 at 16:58

I support Rotherham United so I'm really depressed 😂

User

Posted 25 Dec 2023 at 17:00

Rotherham hmmmm now that's another story. Happy Xmas.

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