My dad has recently been diagnosed

User

Posted 07 May 2022 at 14:22

Hi,
my dad has recently been diagnosed with prostate cancer, it originally started a couple of months ago when he had a psa test for troubles going for a wee, his levels come back at 227 he was referred to urology for examination where they started him on hormone treatment on the same day, he’s had scans and biopsy within 2 weeks.

here is where I’m a bit lost, so results come back, no mets seen, however they have said he has mixed small cell Nueroendocrine Carcinoma and prostatic acinar adenocarcinoma still in the prostate at present 7 out of 12 cores. The consultant said it was 5+4 but it’s not graded the same as the Gleason Score because of the type of cancer? Also said surgery probably won’t be an option. They have had MDT meeting and we have an appointment Monday to discuss.

i think what I’m asking is has anyone dealt with anything similar that could give some insight?

obviously I’ve googled but it scares me.

Thank you in advance.
Kirsty x

User

Posted 09 May 2022 at 22:10

He will be fine loads off treatment options for him personally I was gleeson 9 psa 24.9 had 37 lots off radiotherapy hormone therapy for 2 years 13 months on psa 0.01 and doing reasonably well 👍

User

Posted 09 May 2022 at 20:57

So still feeling none the wiser and the wait for everything just seems so long.
Dad had his appointment today, so although it has not spread to the bones or lymph nodes, they want him to go for a specialist pet scan as scans show he has lesions in his liver.
Dad asked if it was located in the prostate why surgery wasn’t an option, they said in the MDT meeting it was discussed but they aren’t convinced it hasn’t spread if this is the case he will need treatment that targets is whole body not just the prostate. He’s been referred to a specialist oncologist from the royal marsden, so the wait now is for the pet scan and then to see the new oncologist. Dad will probably have to have genetic testing because we have a history of brca gene in our family, so that could effect me and my sister too and our kids.
the prognosis for the small cell is really poor I’m just hoping medicine has come a bit further. My dad is only 66 never had any health issues up untill now.
I’m sorry this might be a bit of rambling I’m just hoping documenting might help me process a bit and maybe a bit of support so I can support him better.

My heart is hurting for him and selfishly myself I couldn’t stand to see him suffer. He still seems to be taking it all on the chin.

thank you for your time if you read this x

User

Posted 09 May 2022 at 22:13

Hi Kirsty, some men can just take it on the chin. Obviously it is not good if they are cracking up inside and just putting a brave face on, but accepting that from the day you are born there is only one possible end is quite healthy, of course one hopes for quite a few years in between the beginning and end.

Sorting out the genetics will at least give the next generations a heads up. As I said previously keep posting, it is helpful to be able to unload your feelings. If this were adenocarcinoma we could give practical advice and interpret the medical jargon (I didn't know adipose tissue is the posh word for fat, before I came on this forum). So in the absence of practical advice the best we can manage is emotional support.

Dave

User

Posted 09 May 2022 at 23:28

I can understand why it is thought Dad's cancer has likely metastasised with a high PSA and good that he has been referred to the excellent Royal Marsden. He may well be given a 68 Gallium PSMA scan which is as as good as it gets in the UK and only available in a few major towns, most of them in the London area. Unfortunately, about 5-8% of men do not express sufficient PMSA for the scan to work, in which case, if he is in this small number he may have to have yet another different scan. Hopefully, he will be given a more definitive diagnosis. It's just a matter of getting to the bottom of it which is hard on the patient, as PCa is a very complex disease and tools to analyse it comprehensively though improving, are far from perfect.

Barry

User

Posted 15 Jun 2022 at 21:03

Hi Lola,

they said it was either missed on the original bone scan or due to him having small cell cancer which is aggressive and progresses quickly it could have spread in that time, he actually has 2 types of cancers in the prostate, he had no pain at the start it cone on and worsened very rapidly. He has been on hormone therapy from the first appointment which does not help with small cell. Praying the treatment beginning shortly will help.
my other sisters will be around while I’m gone and my dad wants me to still go so I think it’s just my own personal guilt.
thank you for taking the time to reply.

kirsty x

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User

Posted 07 May 2022 at 19:43

Please ,please just stay on this site and NHS site , don’t search anything else you will just get overwhelmed . Let the MDT do their work and as you say meeting Monday when the pathway will be hopefully explained

User

Posted 07 May 2022 at 20:08

Thank you for the reply,

yes it is all very overwhelming and to be honest there really isn’t much information on the type. my dad is very much an “is what it is” person so very laid back about it all, whether he is hiding how he really feels to protect us I’m not sure.

I know they want him to have a pet scan within in the next couple of weeks, I just don’t understand why they won’t remove it if it’s only in the prostate.

he’s been feeling more an more unwell the last few weeks possibly could be some side effects from the hormones, muscle pain and very swollen feet and and legs, I was convinced it had spread and was so relieved it hadn’t but now knowing it’s the rare form I still feel uneasy.

but as you say, hopefully we will get a bit more insight on Monday.

again thank you, I really appreciate the reply, I wasn’t sure what I was looking for here but felt I needed to try.

take care x

User

Posted 07 May 2022 at 23:08

Hi Kirsty, sorry you are here. The meeting on Monday will hopefully give you more information. Acinar Adenocarcinoma is the common one and very treatable, about 99% of the people on this site have that one. The small cell cancer puts this outside of the experience of most of us here. Keep posting all your questions though we will try and support you as best we can.

Dave

User

Posted 08 May 2022 at 09:41

Thank you for responding.

yes I know the common one is very treatable especially when localised in they prostate. It’s the rare one that’s concerning, all I’ve read is that it’s the hardest one to treat and doesn’t respond to hormone therapy.

hopefully tomorrow gives us some more insight, I have searched high and low on the forums for anyone with small cell, not much luck.

User

Posted 09 May 2022 at 20:57

My heart is hurting for him and selfishly myself I couldn’t stand to see him suffer. He still seems to be taking it all on the chin.

thank you for your time if you read this x

User

Posted 09 May 2022 at 22:10

He will be fine loads off treatment options for him personally I was gleeson 9 psa 24.9 had 37 lots off radiotherapy hormone therapy for 2 years 13 months on psa 0.01 and doing reasonably well 👍

User

Posted 09 May 2022 at 22:13

Dave

User

Posted 09 May 2022 at 22:28

Hi Gaz, if this were the normal prostate cancer that you and I have, I would agree with you, but it is not, it is small cell cancer. It is a completely different disease to what nearly all of us members on here have. Kirsty is pretty much out on a limb here, a prostate cancer forum is the best place for her to be, but she may as well be talking about a brain tumour or leukemia for the amount of similarity her dad's cancer has to ours. BTW Gaz I'm not criticising you, the more people who can give Kirsty emotional support the better.

Kirsty, I guess the above paragraph shows you how far removed you are from our experience. However one common experience we all have is that we are not going to live forever so I still think we can give you emotional support.

Dave

User

Posted 09 May 2022 at 22:44

I really do appreciate any one’s input, different experiences and hope.
Dave, I really do appreciate your words and taking the time, I searched threads on here and only found one of a lady who’s dad had small cell that was dated quite a few years back.
It’s helpful reading all your journeys and Experience, reading these threads have given me so much more insight into treatments and side effects, that gives me a bit of comfort.
i will keep posting, sometimes it’s easier to speak to people you aren’t close to about things.
You’ve all been so kind. Xx

User

Posted 09 May 2022 at 23:28

Barry

User

Posted 15 Jun 2022 at 19:43

Hi,

just posting an update really,

the last few weeks have been rough, the wait for appointments due on the 20th with oncology to discuss treatment and results from pet scan.

Dads been experiencing pain he described as sciatic that has got worse over the course of a few weeks, not been able to sleep or get no relief, finally come to a head this weekend when he was admitted to hospital.

Mri scan revealed today dads cancer has spread to his spine putting pressure on the nerves causing the pain, all within 6 weeks of a clear bone scan. Waiting on mri for the liver lesions but they way it’s going I expect that will also be cancer.
they are moving him on to the cancer ward to start treatment straight away, so just waiting on information on what’s next.

thankfully the cocktail of meds they have been trying have given him enough relief to get some well needed rest and he seems content enough to stay. ( he’s got white coat syndrome, hates anything medical)

im feeling extremely numb I’m not sure if that’s normal. I’m due to go on holiday on Monday which I feel guilty about but dad said he will be angry with me if I don’t go.

anyway thanks for reading!

Kirsty x

User

Posted 15 Jun 2022 at 20:54

So sorry to read you, Kirsty. I hope Dad can continue to have some rest and therefore some relief to both his pain and white coat syndrome.

I wonder how his cancer appears to have spread to his spine over a few weeks.

In regard to your feeling guilty about going on holidays, I don't know what your scenario is, if you alone are due to care Dad or there is any other relative around to help, but whatever it may be, try to manage that harmful emotion. Do not blame or punish yourself, that's no good, you don't deserve it.
I hope a new treatment help him cope with pain and spirit.
Keep care xx
Lolas

(Sorry for my English this time)

Edited by member 15 Jun 2022 at 20:55 | Reason: Not specified

User

Posted 15 Jun 2022 at 21:03

Hi Lola,

kirsty x

User

Posted 15 Jun 2022 at 22:00

Thank You so much for your kind words you are probably right x

User

Posted 16 Jun 2022 at 00:58

Okay, I was missing from the forum when you joined so missed your early posts. It is true that small cell is a completely different kettle of fish, mainly because it doesn't respond very well to normal hormone treatment but it does respond to chemotherapy and we have had a couple of members here who were still around 5 years post-diagnosis.

Depends on which type of scan he had but small cell doesn't always show up on a Gallium 68 PSMA scan - it may be in future that they look at scanning him with Gallium 68 and another tracer (known as F18) at the same time. The fact that your dad's isn't pure small cell carcinoma also means that the majority of his cancer (wherever it is in his body) WILL respond to the HT. It may be that the mets in his spine are small cell and that is why the back pain has got worse rather than better while on HT. Small cell also usually responds to targeted radiotherapy so if the oncologist suggests zapping the spinal mets, that will hopefully reduce the pain further and improve his quality of life.

I agree with the others - go on the holiday and try to put the guilt away. Dad is dealing with a horrible situation and it might make him feel really sad and guilty if you don't go.

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

User

Posted 16 Jun 2022 at 06:37

Hi Lyn,

thank you for your response.

they did mention starting radiotherapy and chemotherapy once dad is moved to the specialise ward, now that are beginning to manage dads pain he does seem a bit more positive about going forward, hopefully once he’s on the ward he will be more informed of his options, where it’s a pretty new diagnosis and we were still at early stages of appointments we were a bit clueless.

Kings college have taken over dads care on the spine to review whether he may need surgery and extent of damage and local hospital will be dealing with oncology and treatment.

Kirsty x

User

Posted 22 Jun 2022 at 06:50

Hi, just updating from the last week.

Dads still in hospital.

After numerous scans, dad had his appointment with oncology yesterday, unfortunately it’s spread to not only his spine but hip, invading bladder, liver and lymph nodes between the lungs and membrane, prognosis was months to a year. Dad had a pic line put in yesterday and will start a mixture of chemo this morning for 6 rounds, consultant unsure of whether this will help due to the rate it’s spread. Dad will have another scan after 3 rounds to see if it’s done anything. He will also be having radiotherapy. He’s doing okay, he just wants a decent quality of life (pain wise) for whatever is left, I get married on the 29th of July so I’m really hoping he will be well enough.

Thanks for reading.

Kirsty x

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