New diagnosis. Advice about treatment

User

Posted 17 Feb 2022 at 12:28

Thank you Paul, will look into that (although I think he’s not been offered it). He’s got consult with surgeon next week - still in two minds what to do!

User

Posted 17 Feb 2022 at 16:52

Hi Susie

its best to research yourself as well as take advise from your doctor.
Sadly many doctors are not aware or want to explore other options other than what they have in their local hospital on the NHS. Good to have a range of discussions and evaluate outcomes and side effects before you make your final decision. Remember it’s your choice !

User

Posted 19 Feb 2022 at 15:33

It’s a difficult decision and as so many have said previously, it’s a personal choice whilst weighing up the pros and cons. My hubby goes in for surgery on 22nd March. We are keeping everything tightly crossed. X

User

Posted 19 Feb 2022 at 15:38

That’s great

Wishing you all the best

User

Posted 25 Feb 2022 at 17:04

Evening all.

Quick update. Hubby has decided to go for RALRP after having final chats with HIFU and a surgeon today. A different HIFU consultant (from the last one he spoke to) said the tumour is close to being a bit too big to treat. That finally made his mind up for him.

He’s disappointed (as he really fancied the HIFU) but resigned to working on making a good recovery from RP. I’m still in the “whip it out and sort it” camp - so I’m feeling positive!

He’s also having a “robot assisted laparoscopic pelvic lymph node dissection” apparently. We’ve never heard of this. Is this common practice with an RP? I presume they do this to remove any chance of mets hiding in the lymph nodes?

Hope everyone is well.

Sue xx

User

Posted 25 Feb 2022 at 17:40

Hi Sue,

My husband had his RALP in December. He had lymph node dissection…they only took 14 nodes to try to reduce the chances of lymphoedema. Cancer had shown up in one node on the CT scan and PSMA pet scan so that’s why they were removed. I think it does happen where they take them if even no cancer….just in case of micro mets.

Hope you’re husband recovers well from the op, so far it has all gone really well for Rob and much easier than we ever imagined.

Elaine x

User

Posted 25 Feb 2022 at 17:57

Thanks Elaine. I’m still surprised they didn’t do PET scan or bone scan as common practice. Maybe it’s because his PSA is only 4.2?

So glad to hear that it went well for your husband and recovery is better than expected - that’s the news we need!

User

Posted 25 Feb 2022 at 18:28

They didn’t do the pet scan as standard practice. We paid for that after our second opinion didn’t agree about the bone mets so wanted it confirmed.

He was sent for the bone scan though as a slight something showed up on his MRI. I think some seem to do the bone scan as part of the diagnostic process but like you say maybe when PSA is higher x

User

Posted 26 Feb 2022 at 00:43

Some hospitals do a bone scan for all diagnosed men while others only do it if they have reason to suspect mets.

Hardly any hospitals offer PET scan to all diagnosed men - they are expensive, PET machines are under great demand for more urgent situations, tracers can be difficult to produce and have a very short shelf life and, in terms of prostate cancer, seem far more effective at picking up recurrence at very low PSA levels than at initial diagnosis.

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

User

Posted 26 Feb 2022 at 00:52

Originally Posted by: Online Community Member

Evening all.

He’s also having a “robot assisted laparoscopic pelvic lymph node dissection” apparently. We’ve never heard of this. Is this common practice with an RP? I presume they do this to remove any chance of mets hiding in the lymph nodes?

Not really - if the cancer has metastasised in the lymphatic system, removing a few pelvic lymph nodes isn't going to solve it.

Some surgeons remove a couple of lymph nodes in every RP to check whether there is any sign of cancer - if so, adjuvant RT might be offered rather than waiting for the PSA to rise. Other surgeons take a number of nodes routinely but this is becoming less common because of the increased risk of lymphodema later. And some surgeons will only take nodes where the diagnosis is T3 and nodes looked suspect on the scans.

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

User

Posted 26 Feb 2022 at 00:54

Lyn, do you think there’s a chance that the pet scan could say no mets in the bone when actually there is? It did show the cancer in lymph node. Psa was just over 8. Thank you x

User

Posted 26 Feb 2022 at 01:39

As the cancer is Positive to the PET tracer (proven by the + lymph node) it is highly unlikely to give false negative for any significant tumour.

He could have undetectable micro matastisis but only time will tell, hence he will be followed up for years.

User

Posted 26 Feb 2022 at 03:40

Originally Posted by: Online Community Member

He was sent for the bone scan though as a slight something showed up on his MRI. I think some seem to do the bone scan as part of the diagnostic process but like you say maybe when PSA is higher x

Did your husband have the bone cancer [as against bone density] scan you mentioned here? It's usually carried out a a separate procedure and a radioactive "dye" is injected shortly beforehand.

Jules

Edited by member 26 Feb 2022 at 04:07 | Reason: Not specified

User

Posted 26 Feb 2022 at 10:57

Hi Jules,

On his initial diagnosis he was sent for bone scan to detect cancer. He does actually have his first bone density scan next week because of being on HT.

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