First results in

User

Posted 07 Nov 2018 at 11:39

Originally Posted by: Online Community Member

Hi,

Just wondering I know the most common place for spread is the bone but I'm worried that with local lymph nodes involved it could be in distant lymph nodes and or organ's.

Is the prognosis worse for this?

There are at least 27 types of prostate cancer; it is essential that the medics are able to identify which type the man actually has.

Some types of PCa prefer to go to bone. Some types tend not to go anywhere but some may eventually affect local lymph nodes. Once in the local nodes, prostate cancer can move easily in the lymphatic fluid to affect the whole lymphatic system. Some types of prostate cancer (usually the rarer ones) don't like bone and prefer lung, liver, brain.

The worst outcomes are usually for men who have soft organ mets such as brain or liver although mets in the skull or jaw tend to be fast moving.

Men don't usually die of prostate cancer; the actual cause of death Is often organ failure due to lymphedema, or the increasing levels of toxic drugs leading to unconsciousness and then induced coma and eventual dehydration.

Edited by member 07 Nov 2018 at 11:51 | Reason: Not specified

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

User

Posted 07 Nov 2018 at 11:42

I had to wait five weeks for my post-operative biopsy histology results. The paperwork showed they had not even been looked at for four weeks and presumably had been languishing in a freezer all that time.

The Royal Surrey County Hospital has a severe shortage of pathologists apparently.

Cheers, John

Edited by member 07 Nov 2018 at 11:51 | Reason: Not specified

User

Posted 07 Nov 2018 at 11:48

Originally Posted by: Online Community Member

Thanks.

I just don't understand their plan, it is now well known that HT treatment is more effective when combined with chemo early on so if they start HT on the 15th November it's going to be at least another month after that before we have bone scan results so the treatments aren't running together

I'll call the specialist nurse on Monday

Early chemo is not about it starting at the same time as the HT. 'Early' means 'earlier than as a last resort in terminal cases'. Until very recently, chemo was only given when all other options had failed; it doesn't kill prostate cancer. The realisation that chemo given before the terminal stage can make HT more effective, particularly enzalutimide and abiraterone has rather changed the picture but a delay of a month to check that he actually needs chemo is wise - it is one of the kinder chemotherapies but should not be entered into lightly as it can kill.

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

User

Posted 07 Nov 2018 at 11:57

Thanks

So the fact it's in local lymph nodes is a bad sign then?

User

Posted 07 Nov 2018 at 13:59

Gemma, lymph node involvement is not the greatest news, but by any means not the worst.

On biopsy, two out of fourteen lymph nodes I had removed were cancerous. I have undetectable PSA currently and no biochemical recurrence, and one oncologist told me I am cured, and another one told me it won’t kill me if even if it recurs.

So I am just carrying on as normal, and have never felt so well.

I do hope you get his results soon Gemma, and a treatment programme in train, and then hopefully you won’t need to worry so much.

Best wishes, John.

User

Posted 07 Nov 2018 at 23:35

Originally Posted by: Online Community Member

Interesting perspective - pretty certain that if the lymphoedema or drug toxicity is because of prostate cancer it will still be recorded as death from PC!

Not sure how any of this morbid detail helps!

To try and answer the question yes lymph node involvement is a concern, but provided it is only local lymph nodes radiotherapy will still be potentially curative. But you need to complete the staging diagnostic tests and get his treatment sorted asap.

User

Posted 08 Nov 2018 at 00:04

Originally Posted by: Online Community Member

pretty certain that if the lymphoedema or drug toxicity is because of prostate cancer it will still be recorded as death from PC! Not sure how any of this morbid detail helps!

Gemma asked specifically about what difference soft mets makes to prognosis.

Yes of course PCa would usually be recorded as one of the causes but the certificate will say "organ failure due to adenocarcinoma" or similar. The point I was making is that many people worrying about the end don't realise that it is the side effects of the cancer or treatment that usually cause death, rather than the cancerous cells themselves, which is why many people do have a peaceful end.

As you rightly say, it is not relevant to her current situation but some people feel better with knowledge rather than their imaginings.

Edited by member 08 Nov 2018 at 01:25 | Reason: Not specified

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

User

Posted 08 Nov 2018 at 01:00

Gemma,

I was Flagged up as at risk beginning of March 2018 and final diagnosis and treatment plan finalised end of June 2018. Finished 6th and final Up Front Chemo 3 weeks ago but continuing with Hormone therapy. See my Profile for full details.

Agreed the waiting can be agonising but as others have said this is not generally a rapid spreading disease.

User

Posted 08 Nov 2018 at 06:58

Hi Andy

You are on the same treatment cycle(prostap and chemo) as me, albeit you are a few weeks ahead of me.

I've sent you a private message if you don't mind having a look and responding I'd be grateful.

kind regards

John (JasperM)

User

Posted 08 Nov 2018 at 11:46

John

Sorry but I can't do private emails on here as haven't posted enough to be allowed to.

Anyway I have been very lucky as have been able to tolerate the chemo very well. My only side effects were mild feelings of nausea/indigestion for about the first week then my taste buds disappeared and a nasty metallic taste for another week. Occasional muscle/joint ache and at the moment my eyes are weepy as my eyelashes have fallen out. Used the cold cap so managed to keep most of my hair but it stopped growing and only have to shave every 7 to 10 days (Joy!).

To be honest my friends have said they don't believe I've been on chemo. Since I was diagnosed I've renovated and built an extension at my youngest daughter's flat, got my eldest daughter married and generally not had to alter my lifestyle at all. Yes I have had days were I've come home early and gone to bed for the afternoon but by the following day felt okay again.

I will say though that the final chemo did take a lot more out of me which may have been because I have become slightly anemic.

Next 3 month Prostrap hormone injection tomorrow then scan results on 21st November after a 5 day break in Florence and Siena.

Hope this helps

All the best

User

Posted 08 Nov 2018 at 13:00

Hi Andy

Thanks for the update, very reassuring to read, have a fabulous time in Italy and good luck with the scan results.

John

User

Posted 08 Nov 2018 at 13:06

Has anyone had chemotherapy having previously had a heart attack?

The heart attack wasn't known until it showed on an ECG some years later and I think it was diet related which has since changed

User

Posted 15 Nov 2018 at 16:51

We've just returned from biopsy.

Bone scan is clear, just CT results to wait for. Everything crossed

Don't know whether to breathe a sigh of relereor not

Edited by member 15 Nov 2018 at 16:58 | Reason: Not specified

User

Posted 18 Nov 2018 at 09:59

Just got back from 24 hours in hospital. My husband developed sepsis from prodtpro biopsy which was very scary as he was shaking violently. Has now had antibiotics and feeling better.

Just really worried that with a high psa and bone scan clear that it's in organs

So frightened

User

Posted 18 Nov 2018 at 11:14

Bone scan clear is ALWAYS a good result it means he is still on track for treatment that could give a durable remission.

I beleive high PSA producing tumours are generally better behaved than low producing ones.

The biopsy and CT / MRI scan are key results now.

This period is probably the toughest time for you it will get better when you know what is going on.

User

Posted 18 Nov 2018 at 11:18

Thank you so much

I'm so scared that if it's not in the bones its in the lungs or liver. It's been such a long wait and I'm not sure if I want the results as there is at least some hope now and my husband seems blissfully unaware

I love him so much, he's always been my rock so finding it very distressing. We were so happy

User

Posted 18 Nov 2018 at 12:06

I am awaiting test results so I fully understand your worry, it can be an agonising wait. Fantastic that bone scans were clear, let's hope you have more good news very soon.

User

Posted 18 Nov 2018 at 12:07

Thanks Steve.

And to you too

User

Posted 18 Nov 2018 at 12:23

Originally Posted by: Online Community Member

Just got back from 24 hours in hospital. My husband developed sepsis from prodtpro biopsy which was very scary as he was shaking violently. Has now had antibiotics and feeling better.

”The TRUS biopsy is as bad as we thought it was” - the number one specialist prostate cancer consultant oncologist at Britain’s number one cancer hospital, The Royal Marsden.

“The investigators found the transperineal (biopsy) approach to be protective. Compared with transperineal biopsy, transrectal biopsy was associated with nearly 3.5 times increased odds of infection” - Renal and Urology News.

Hope you get the biopsy results soon, Gemma and that they are nowhere as bad as you fear. Then you can begin to kill the bugger.

PS What is prodtpro?

Cheers, John.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5413992/

Edited by member 18 Nov 2018 at 12:30 | Reason: Not specified

User

Posted 18 Nov 2018 at 12:34

Thank you.

Supposed to be prostate!

Just had a call from the hospital to advise that he shouldn't of been discharged yesterday and needs to come back in ASAP for a couple of nights

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