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Does this ever get easier?

User
Posted 15 Sep 2023 at 09:54

Hi Willow. I am a T3bN1M0 so not all that different except my main tumour did breach the Prostate capsule. They decided surgery was not right for me as seminal vesicles and two pelvic nodes are also suspect. My treatment has been hormone therapy to lower PSA and "put the cancer cells to sleep", followed by 6 sessions of Chemo (Docetaxil). Then more scans and external beam radiotherapy. So far almost done with chemo, hormone therapy working and psa down from 119 to 0.5. Chemo was insurance against any micro spread of cancer cells not showing up on PET PSMA scan. See what options they give your other half and go from there. BTW my Gleeson was 4x4=8, 12 out of 13 biopsy cores with cancer cells. Good luck and above all, keep him positive!! Not easy, but so important. You have got this! 👍😃

Edited by member 15 Sep 2023 at 10:57  | Reason: Gleeson score corrected

User
Posted 18 Sep 2023 at 22:37

Hi 

Can anyone explain what cribriform pattern 4 means please?

User
Posted 19 Sep 2023 at 00:32

Well cribriform just mean many holes like a sieve. So when the pathologist looks at prostate biopsies they look at the way the cells are laid out and if they are really nicely laid out in orderly rows they say those cells are Gleason pattern 1, and if they are very haphazardly laid out they say it is a Gleason pattern 5. You can Google images of prostate biopsies to get an idea as to what they are looking at. If there are gaps between cells they will say it is cribriform as well.

So cribriform pattern 4 means quite haphazard with gaps.

Now that is just a description; of more interest to you is what does that mean for the diagnosis. Well from what I've googled it is not good, it is associated with more aggressive cancers which are more liable to spread.

If your OH has this, I think they will be quite concerned about spread either in the pelvis or possibly to other parts of the body. A few years ago they would have tried one treatment and then if it failed try another and so on. Now-a-days it seems they decide to throw everything at the cancer from the outset, so depending on how worried they are they could add RT, HT and Chemo. But as kerm63 says it's best wait to hear what they say than try and second guess what will happen.

Dave

User
Posted 19 Sep 2023 at 07:23

Thanks for your informative response Dave, received a letter yesterday detailing OH's last consultation, it states there's evidence of cribriform pattern 4,   hadn't been mentioned before. Just gathering as much information as possible to enable him to make the choice between surgery or RT.

Thanks again

Willow 

User
Posted 18 Dec 2023 at 21:47
Hi Willow. How is he doing? Made the choice between RT and Surgery? Have things gotten any easier for you? Tough times, but an opportunity to draw closer if you are lucky! David
User
Posted 21 Dec 2023 at 22:52

Hi David , thank you for asking , to be honest , no things aren't the best .... Hubby has chosen surgery, but there is such a long waiting list. We were originally told 4 months..... But rumor has it it's more like 10..  we are being told hormone therapy will keep it at bay for now . It feels like cancer is eating away at our whole life... 

We've tried to get a straight answer from the hospital about the waiting list but they seem reluctant to answer the question .

 

User
Posted 22 Dec 2023 at 05:18

Originally Posted by: Online Community Member

Tp3a, it's very close to the outer edge so not 100%sure if it's escaped the prostate. Bone scan clear  no sign of spread to other organs or surrounding tissue, but multiple lung nodules found . Was waiting three months to see if the nodules shrink with treatment , gleeson 7

Hi Willow.

I'm retired and 10 years older than your hubby. So I don't have the additional strain of work commitments he has, but our diagnosis seem very similar.

I was T3a, bone scan showed lytic areas and a couple of lung nodules, but neither believed to be connected to the cancer. At this time I was Gleason 8 (4+4), 20 out of 24 cores. PSA 6.6

I was put on hormone tablets to suppress the cancer and had non nerve sparing RARP 5 months later. During the op they removed seminal fluid tubes and 9 lymph nodes.

Pathology of the prostate revealed Gleason 9 (4+5) may have been elevated due to HT and nothing untoward was found in the seminal fluid tubes or lymph nodes.

Ten months later my PSA is undetectable, but I have been warned that there's still a high chance of recurrence.

Post op I had all the usual side effects including incontinence and ED. I'm now fully continent and can get erections with Invicorp.

Like most I dread PSA testing times. 

No-one's mentioned anything more about the anomalies in the bones, no-one's mentioned anything more about the lung nodules. 

Sods law,  only two months after the op I had a heart attack, had to be stented but will require further cardiac treatment.

I'm beginning to feel like an old clapped out car going for an MOT, the more they check things out, the more they find wrong. 🙂

On the bright side everyones says how young and healthy I look. They've obviously got eye problems and need to go to Specsavers.

Best of luck to both of you.

Adrian

 

 

Edited by member 22 Dec 2023 at 05:41  | Reason: Not specified

User
Posted 22 Dec 2023 at 07:16

Hi Willow,

Have you thought about finding a local support group such as Maggies. If there’s one near you,  both of you just go along(no appointment needed) and have a chat with them and maybe join one of their cancer support groups. It’s helped me enormously to get through this ordeal.

Adrian, I know what you mean about the ‘you’re looking so well’ comment. Yes, on the outside I DO look well, but on the inside I have aching joints, zero libido, hot flushes, insomnia, Peyronie’s disease, brain fog, anxiety…..I’ve learned to just smile as there is no point😊

PSA Anxiety…yes, absolutely! I’m now bypassing my GP who wants to take over a week to say my result is ‘normal’🤷🏼‍♂️ I now go straight to my CNS 2 days after test to get the actual result! That’s 6 days less of me being like a bear with a sore head….just ask my wife🤣🤣

 

User
Posted 22 Dec 2023 at 08:17
Have you tried writing to the consultants secretary and asking to be put on the cancellation list too?

Also ask what impact the cribiform pathology has on the urgency of the operation AND if the surgeon can guarantee ALL the prostate cancer is being put to sleep AND that he will have no long lasting effects from the HT.

User
Posted 22 Dec 2023 at 21:22

We have a specialist nurse, but unfortunately is not replying to us. I will definitely do that , thank you for that suggestion .

User
Posted 22 Dec 2023 at 21:24

I have been chatting to a Macmillan nurse online who has been brilliant .... Everything seems so hard  but will look into a local support group .Thank you 

User
Posted 23 Dec 2023 at 13:27
Hang on in there Willow, easier said than done at times. I hope you manage to contact someone (anyone) and see if his surgery can be brought forward - the waiting is hard. Let us know how you get on and best wishes to you both x
User
Posted 03 Jan 2024 at 04:45

Good morning, just a quick update, phone call today giving a date for operation, next week... 

User
Posted 03 Jan 2024 at 10:56

I'm glad they've got things moving, even though it is short notice. From your past experience I think we will wait until he is out of theatre with no prostate before we celebrate.

Dave

User
Posted 03 Jan 2024 at 13:04

Hi Dave, I have to agree with you .

User
Posted 09 Jan 2024 at 18:29

Well where do I begin!!!!

Dave, you were right to say don't celebrate till he's off the table minus his prostate!! Cancelled the operation at the last second.

I really think I've given up.

User
Posted 09 Jan 2024 at 18:55

Quote:
Willow 

Dave, you were right to say don't celebrate till he's off the table minus his prostate!! Cancelled the operation at the last second.

I was gowned up for the op in Nov 2022, it was cancelled through a lack of beds.

A month later, I was again gowned up for the rescheduled op, and it was cancelled due to anaesthetists concerns. 

My wife and I were shattered by both cancellations.

I eventually got the op in Feb 2023.

I know operations sometimes have to be cancelled at the last minute, but I honestly believe that some clinicians don't realise how devastating these postponements are for patients and their families.

 

Edited by member 09 Jan 2024 at 19:13  | Reason: Not specified

User
Posted 09 Jan 2024 at 19:08

Yes shattered is a suitable word, I'm just so tired of the problems...... He had been gowned up since 7am , the surgeon told him at half past 2

User
Posted 09 Jan 2024 at 19:12

Feeling for you really woeful treatment 

User
Posted 09 Jan 2024 at 19:28

Originally Posted by: Online Community Member

Yes shattered is a suitable word, I'm just so tired of the problems...... He had been gowned up since 7am , the surgeon told him at half past 2

That's exactly what happened to me, on the second cancellation. I think 1430-1500, is the cut off time for a lot of theatres.

 

 
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