Husband’s diagnosis and possible treatments

User

Posted 29 Jan 2023 at 09:29

My husband was diagnosed with PC just before Christmas, 8/12 cores, both sides of prostrate, Gleason score 4-5 and it has gone through capsule. PSA 6.11 He is having a PET scan this Wednesday and starts Bicalutamide tablets Thursday followed by a Ht injection 2 weeks later. We have an appointment with oncologist on 1 March to discuss treatment.

As it has broken through the capsule I understand that removal of prostrate is not an option but family members want him to get a second opinion. Is there any point getting a second opinion or is radiotherapy his only option. He is happy with how quickly he has been treated so far.

User

Posted 29 Jan 2023 at 13:58

The recommendation that he has radiotherapy will have been made by a multi-disciplinary team including urologists (surgeons), oncologists, radiologists and other disciplines. He could get a second opinion to see whether another doctor would disagree with that specialist team and, if he wished, push for surgery regardless. But, and this is a big but, he would need to take into account that the surgery would be unlikely to be effective, he would probably have to have hormone therapy & radiotherapy anyway and so would have to live with both sets of side effects. Also, if the cancer has already broken out of the gland, he would probably not be able to have nerve-sparing surgery which increases his risk of permanent incontinence and also pretty much guarantees erectile dysfunction. At least with HT / RT, there is a chance of maintaining / recovering the ability to have penetrative sex.

It may be that surgery is not being offered because the hospital suspects there is wider spread to his bones or organs and that is why the PET scan is being done. When you see the onco in March, if the PET is clear it would be worth asking about different types of RT such as brachytherapy or a combination of brachy and external radiotherapy.

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

User

Posted 29 Jan 2023 at 20:05

Hi Allyson,

This all sounds familiar to me…I am T3BN0M0 - surgery was ruled out by the MDT because there was too much risk of leaving something behind and therefore almost certainly requiring Salvage RT…..and if you read through posts on here you can see the number of members who have faced this following a prostatectomy.

Taking the decision away from me meant it was just something else I didn’t need to worry about. It took me time to come to terms with it but I find the more I talk about it the easier it becomes.

When you have your meeting with the Oncologist it’s a really good idea to write down your list of questions…and with his permission I am told you can also ask to record the consultation, which might prove very useful.

Good luck with the treatment!

Derek

Edited by member 29 Jan 2023 at 20:06 | Reason: Not specified

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User

Posted 29 Jan 2023 at 13:58

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

User

Posted 29 Jan 2023 at 15:55

Thanks Lyn for your reply we will discuss his options with oncologist but I understand now why he hasn’t been offered surgery. It is all such a worry and we want to know that we have made the right decision.

User

Posted 29 Jan 2023 at 16:47

Hi Allyson,

The fact you are here is very sad

I was recently diagnosed with localised advanced also. T3aN1 and underwent a PET scan which confirmed spread to lymph nodes in the pelvic area.
As Lyn said my case was considered by a MDT and surgery ruled out for exactly the reason Lyn mentioned and immediately started HT and planned for RT in April.

I was particularly stressed when awaiting the diagnosis but to be honest once I knew the treatment plan I have felt much better mentally. Now I can concentrate on staying fit and well while I wait for the RT knowing that the HT will be working in the background.

Lean on the people in here for support I have found the community kind and very knowledgeable

Best wishes

Edited by member 29 Jan 2023 at 17:22 | Reason: Typo

User

Posted 29 Jan 2023 at 17:12

Hi Allyson,

My husband was diagnosed originally T3a N1 M1b. The local MDT decided HT and chemo/enza as it was incurable.

We did get a second opinion and it went to another MDT, this one disagreed with the M1b so changed from advanced to locally advanced. Surgery still wasn’t a preferred choice but we convinced the surgeon to do the operation….although we went into it knowing all the increased risks (because of age aswell) and that radiotherapy would likely be needed.

He had the op Dec 2021 (removed 14 lymph nodes…1 had cancer), which luckily for us went really well, main side effect is ED which is improving even without any medication. He’s been very fortunate to get to this point and still have an undetectable PSA…next test next week so who knows 🤷🏻‍♀️🙏🏼

He did have 6 months of HT, last 3 monthly injection was Nov 2021.

Best wishes to you both, when you know exactly what’s going on and have your plan in place things do get easier.

Elaine

Edited by member 29 Jan 2023 at 17:13 | Reason: Missed info

User

Posted 29 Jan 2023 at 20:05

Hi Allyson,

Taking the decision away from me meant it was just something else I didn’t need to worry about. It took me time to come to terms with it but I find the more I talk about it the easier it becomes.

Good luck with the treatment!

Derek

Edited by member 29 Jan 2023 at 20:06 | Reason: Not specified

User

Posted 29 Jan 2023 at 22:54

Thank you all for replying can someone explain what all the letters and numbers like T3 N0M0 means.

User

Posted 29 Jan 2023 at 23:16

Originally Posted by: Online Community Member

Thank you all for replying can someone explain what all the letters and numbers like T3 N0M0 means.

T is the tumour size and position….so T3 means it’s pushing the capsule, but this can be graded T3 a,b or c (T3a was described to me using an orange and it meant that the tumour had pushed into the peel but hadn’t escaped it).

N is nodes….whether there is any lymph node involvement N0 means not N1 means there is and NX means they don’t know.

M is metastasis….whether the cancer has spread to other parts of the body including bones. M0 means it hasn’t.

Hope that makes sense.

User

Posted 29 Jan 2023 at 23:37

Don’t think there is a T3c but T3b(as in my case) means it’s spread to the Seminal Vesicle(s)

Did the CNS give you a booklet on Prostate Cancer? It’s very informative on all this.

User

Posted 29 Jan 2023 at 23:59

Originally Posted by: Online Community Member

Don’t think there is a T3c but T3b(as in my case) means it’s spread to the Seminal Vesicle(s)

Did the CNS give you a booklet on Prostate Cancer? It’s very informative on all this.

Thank you. Yes think it’s just T1 and T2 that have c

There are so many numbers and letters, not surprising it confusing….but like you have said the booklets from the hospital are really useful and from PCUK.

User

Posted 30 Jan 2023 at 01:37

Originally Posted by: Online Community Member

...removal of prostrate is not an option but family members want him to get a second opinion...

Very common that people who know very little about a patient's case think surgery is the best option, it is an emotional response. The medics are more likely to be correct, than the man on the Clapham omnibus, or the random guy on a cancer forum.

Surgery may be the best choice in many cases, but don't go looking for a surgeon when it's already been decided that's a bad choice.

A second opinion in Elaine's case was very worthwhile it took her husband from the incurable to the curable category.

I can't see a small change in Alyson's husband's diagnosis making any change to his proposed treatment.

Dave

User

Posted 30 Jan 2023 at 06:20

Originally Posted by: Online Community Member

...removal of prostrate is not an option but family members want him to get a second opinion...

.... or the random guy on a cancer forum.

Well he says until the PET scan the MDT won't have all the information. PET changes stage and optimal treatment all the time these days so fingers crossed for a positive outcome from the scan on Wednesday.

He also says that G9 T3A will require aggressive action so ask if they are treating pelvic nodes too and if not why not.

User

Posted 30 Jan 2023 at 09:38

Thank you Nigel for taking the time to reply. I hope your treatment progresses well.

This forum has really educated us and has helped weirdly to ease some of our anxiety. Fingers crossed for husbands PET scan at least then we will know what we’re dealing with.

User

Posted 30 Jan 2023 at 13:21

Thanks Allyson

the info from PCUK which can be accessed here is very helpful also

My onco was excellent in taking the time needed to explain everything he showed me the scans and I think I mentioned on a previous post the the Pet scan images were very very clear and left no doubts.

Hope you OH’s are clear 🤞🏻

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