Husband just Diagnosed, Desperate for Advice!

User

Posted 21 Jun 2024 at 12:07

My husband is 64 and has just been diagnosed with prostrate cancer. I am very new to this, but I think this is the full set of his results:-

PSA 9.5, prostrate volume 70.25, PSA density 0.41, PIRAD 4/5

Staging T2N0M0, Gleason 4+3, prostrate adenocarcinoma left posterior prostrate 3/6 cores

Atypia right posterior

3/18 malignant cores

I'm sorry if this if far too much information, but I have just cut and pasted information from the doctor's letter, which I think may be relevant. The doctor was brilliant, but we were obviously reeling from the diagnosis and it was so much to take in. He explained that my husband could have surgery or radiography and both would give a similar outcome, but were very different paths to take. The way he described the radiotherapy gave a very negative picture and we felt at the time that surgery would be the best path to take, so tentatively agreed....apparently there is 2-3 months wait to we knew we had plenty of time to research things a bit more.

Now a week later, things are slowly sinking in and my husband has gone off the idea of surgery. He is almost in denial which I think is very common looking at some of the many posts on here.

I would like to find out more about the radiotherapy option and then weight up the possibilities but don't quite know where to start. Do we go to see my husband's own doctor or do we make enquiries ourselves? We live in Norfolk (UK) and I know that the Norfolk and Norwich is quite advanced in this field, but am not sure how we would start the process.

Sorry for the long winded post, am still very much in shock but I know that we will both feel better once we decide on a course of treatment, also thank you in advance for any advice.

User

Posted 25 Jun 2024 at 16:47

Many thanks for your replies, it is really helpful to hear such positive stories and posts with all the different methods of treatment.

We have spoken to the nurse and have an appointment with both the surgeon and an oncologist in the next 2 weeks. Also, it is possible that if we went down the surgery route it could be nerve sparing as the cancer is only on one side (I think that’s correct!)

We are definitely feeling a lot more positive now and I am genuinely thankful for all the people who have taken time out to answer my post, hopefully not long now before we have a treatment plan in place!

User

Posted 21 Jun 2024 at 15:05

Hi Jen - sorry you had to find us but glad you did.

I was diagnosed at 62 and decided on the RP surgery (have a read of my profile). It was horrible to find out you have PCa but the more you read and become better informed the less it freaks you out. 12% of men will be diagnosed to PCa - far more will actually have it and very few ever die from it.

Your husband is lucky in that they have caught it early and he will have choices regarding treatment. RP surgery is not as bad as it sounds for most men and he has age on his side - had he been older then HT/RP might have been his only option. If RP isn't a complete success (as mine wasn't as I was T3aN0M0) then he has the option for further HT/RT treatment which I'm currently going through.

So although surgery sounds scary, it might be an option worth considering in discussion with his consultants. However there are plenty on here who have experience of both treatment options so please keep asking and reading as the better informed you are the easier the decision will be. Just rest assured that at this stage, either treatment will be seen as curative.

Steve

User

Posted 24 Jun 2024 at 13:51

Hi there

Very sorry you e had to join the forum but I know you will get lots of useful advice and support from it as I have.
My husband was diagnosed with Gleeson 9 PC T2b following MPRI scan and Biospy one tumour left mid gland 16mm PIRAD 5

We discussed Brachytherapy and Hormone therapy at The Christie and Radical Prostectomy

As my husband was experiencing some mild urinary symptoms they felt that the RP maybe the best route as the Brachytherapy could make this worse.
He had his surgery last week and is recovering well.
The surgeon took the left side nerve bundle to hopefully achieve a negative margin and is seemingly confident about his continence in the future.
My husbands first choice of treatment would have been Surgery as he wanted to try and have his treatment over more quickly and he didn’t really want to have Hormone treatment. We do however realise that this may need to be done at some point if he had a recurrence.

I hope you get some good info from your team and he gets treatment as soon as possible.

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User

Posted 21 Jun 2024 at 13:28

Hi, jen06 I had similar diagnosis to your husband in November 2023 and deciding which treatment path to go down is one of the hardest decisions we all have to take once diagnosed, I was advised to look at Prostate Predict on the NHS website and after careful consideration and studying all potential side affects I went down the Radiotherapy route and 3months of HT prior to treatment.

12 months on since my treatment finished I feel like I'm back to my normal self after treatment, the worst part was making the decision as to which treatment route to go but once my mind was made up I just got on with it, please study all options and ask plenty of questions before making a decision I wish you and your husband all the very best

John

User

Posted 21 Jun 2024 at 15:05

Hi Jen - sorry you had to find us but glad you did.

Steve

User

Posted 21 Jun 2024 at 15:46

Hi Jen.

I'm sorry that you've had to find us but I'm glad you have. Welcome to the forum.

R/T and H/T or surgery, is probably the most asked question on here. Unfortunately there is no correct answer. Generally, the overall outcomes are very similar, but for certain individuals the outcomes can vary enormously.

Whatever treatment your husband chooses, I wish you both well.

User

Posted 21 Jun 2024 at 16:35

For radiotherapy, you need to get an appointment with the oncologist, and discuss what options they would suggest. (The urologist isn't going to be able to give you details of radiotherapy.) There are different regimes for radiotherapy, and for a 4+3, it probably also comes with hormone therapy.

For the surgery, a couple of questions I would ask:
How likely am I to be continent afterwards?
How likely is it my erectile function will be OK afterwards? (i.e. is it likely to be nerve sparing?)

User

Posted 21 Jun 2024 at 17:44

Thank you so much for all your replies, it has really helped a lot and has given us a lot to think about. We are going to try and digest things a bit more at the weekend and then maybe make some appointments for the near future to discuss things further

Your posts have given me a lot of comfort and I am very grateful for all the answers. Thanks again!

User

Posted 21 Jun 2024 at 19:04

Given the results of your husband's examinations, with a Gleason of 4+3 and a PSA of 9.5, there is every chance that he will respond well to therapy (whether he chooses radical prostatectomy of hormone treatment plus radiotherapy). I was diagnosed with a Gleason of 4+3 and aPSA of 14 in 2019, and had the option of r/p or hormone and radiotherapy, which I chose having been told that the outcome would be the same whichever I chose. It comes down to personal choice, and although it's a pain going for radiotherapy every weekday for 20 or 35 days, the treatment iteself is not hard to tolerate. Don't panic and don't despair - he is going to be OK.

Hermit.

Edited by member 21 Jun 2024 at 19:06 | Reason: Not specified

User

Posted 21 Jun 2024 at 20:40

Hi jen06,

I appreciate that you've said that your husband seems to be going off the idea of surgery, but if he should change his mind, it might be worth asking if the surgery will be both nerve-sparing and Retzius-sparing. Nerve sparing reduces (but doesn't eliminate) the risk of erectile dysfunction, but Retzius-sparing refers to a space between the prostate and the bladder, and it is my understanding that, if this is 'spared', the chances of incontinence after the surgery are significantly reduced. Many hospitals don't offer this procedure yet (it's relatively new) but I understand that it is possible to ask for a referral to a surgeon or hospital that does so.

I know you have a lot to think about, so I'm sorry if this just adds another layer of complexity.

Best wishes in whatever you decide to do.

JedSee.

User

Posted 22 Jun 2024 at 17:02

JedSee,
Many thanks for your post, we are hoping to speak to the surgeon early next week, so really appreciate your information and will definitely ask these questions. It seems that it can obviously make a world of difference depending on the type of surgery as to the side effects, thanks again for your help.

User

Posted 22 Jun 2024 at 17:08

Hi Jen, eighteen months ago I had very similar readings. I was offered any treatment I wanted. I chose LDR Brachytherapy. This may be an option however there are some strict parameters that must be met. From what I recall the volume of the prostate must be in the region of 50cc or less ( I think some hormone treatment may be able to slightly shrink the prostate ) and the PSA must be less than 12.
It may be worth enquiring about this line of treatment. I found the procedure very straight forward but like all treatments it comes with possible side effects ( for me fatigue was the main one, oh and my wife banishing me to the spare room for three months until I no longer glowed in the dark 😵‍💫)
Click on my avatar for more information.
There are only a handful of men on this site who have had Brachytherapy, it sometimes appears to be the “secret treatment”🤔🤐🤔
The choice of treatment is very difficult.You will both feel much better once you have decided which path to take.

Rgds
Dave

Edited by member 24 Jun 2024 at 14:18 | Reason: Not specified

User

Posted 23 Jun 2024 at 10:30

Hi Dave,

Thanks very much for your reply, I have just read your profile and is very encouraging!

I did google a little bit about Brachytherapy and know that they carry it out at a hospital not too far from us, so will definitely be enquiring. We are going to start making some phone calls tomorrow for appointments etc but your information has been really helpful and I do appreciate it a lot,

thanks again,

Jenny

User

Posted 23 Jun 2024 at 12:18

To be more precise, there are two quite different types of Brachy. One type and probably the most common is called 'Low Dose' or 'Seeds'. This is where radioactive seeds are permanently placed so as to radiate the tumour(s) as they gradually reduce the amount of radiation they give off. The other type is called 'High Dose'. Here radioactive rods are inserted for a specified time during an operation and then withdrawn as apart of the operation. The type given is that which is thought most appropriate for the individual, although sometimes there is a choice. Then either type may be supplemented by EBRT if the oncologist feels this appropriate. More people are having Brachytherapy now and it is certainly worth asking about.

Edited by member 23 Jun 2024 at 12:31 | Reason: spelling

Barry

User

Posted 23 Jun 2024 at 19:57

Hi, I’m similar scores to your husband but my PSa level was 6.98. Had 4 positive scores from 28 in my biopsy & only 10% was Gleason 4.

I was diagnosed in January, I was offered all options and I chose Active Surveillance, my thinking was why have anything done now if it doesn’t need doing, many men have been on AS for 8/10 years or more, I’d speak with your husbands team to get their thoughts, you can also speak with the specialist nurses on the Prostate cancer helpline who are a great source of information. I’ve used them many times for advice

User

Posted 23 Jun 2024 at 21:18

My only concern is that the diagnosis from scan/biopsy can only ever be 'best guess' as the only real answer is when the prostate is dissected post removal. So anyone who was 'marginal' might be taking a significant risk on AS - if the results are pretty clearly that there is nothing well developed at that stage then fine, but it needs to be very carefully considered and not a 'bury your head in the sand' approach - that wasn't meant to sound harsh so sorry if it sounded as if it was.

User

Posted 24 Jun 2024 at 08:35

Hi Barry, Many thanks for the information and explanation on Brachytherapy, that really helps a lot and we are definitely going to mention it to the oncologist as soon as we can get an appointment, will be making some phone calls today so hopefully sooner rather than later.

I have had another read of the doctor's letter and the last paragraph quotes that my husband presents with "unfavourable intermediate risk prostrate cancer", therefore I think that AS would not be an option, although we will definitely get a second opinion.

Thank you all so much for your replies, it is really, really helpful, I can't believe how much I have learnt about pc in just a matter of days thanks to this group, although I am sure there is a lot more to find out. Thanks again!

User

Posted 24 Jun 2024 at 13:51

Hi there

We discussed Brachytherapy and Hormone therapy at The Christie and Radical Prostectomy

User

Posted 24 Jun 2024 at 18:04

Hi Jenny,

I had a choice of Robotic surgery or Brachytherapy and took the Brachytherapy route as i felt it had less side affects. I was diagnosed at 70 in 2016 with PSA 2.19 Gleason 3+4=7 with 5 cores out of 20 positive.

The operation was very good and i was in and out with in two days with very little pain and driven home in the car by my daughter.I was given Tamulosen and a few pain killers .I had no side affect of any kind apart from getting up a few times a night to wee. I will be eight years on in September and pleased that i took the Brachytherapy route.If you click on my avatar you can see my journey so far.

John

User

Posted 25 Jun 2024 at 16:47

Many thanks for your replies, it is really helpful to hear such positive stories and posts with all the different methods of treatment.

User

Posted 26 Jun 2024 at 19:00

Keith Ollie,

Many thanks for your PM. It was really kind and thank you so much for all the helpful information.

I did try to send you a PM back but am not allowed to as yet as I am a newish member.

Thanks again, we now have an oncologist’s appointment too so I will bear in mind the information you gave me,.

I wish you all the lock on your journey also,

many thanks, Jenny

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