9 years post diagnosis

User

Posted 21 May 2022 at 08:18

So it’s nearly 9 years ago since my first post and hubby and I have had a busy few years. After his radiotherapy he retired due to fatigue which fortunately had limited impact on the majority of his daily activities. His worst side effect from radiotherapy was and still is bowel issues to the extent we’ve changed our life style in particular with regards travel - we’ve started cruising from Southampton to reduce the stress of urgency at the airport or mid flight when toilet access is limited.
We’ve had some amazing times building memories, welcomed a great granddaughter into our lives and moved back to Portsmouth from Norfolk.
Unfortunately 3 years ago hubby’s PSA started creeping up again. He was restarted on Prostap and following further rise to his PSA added bicalutamide into the mix. His scans at that time showed that his cancer had spread to local lymph nodes.
We moved back to Portsmouth in June last year when unfortunately there was a delay in transferring him to the local oncology team, as the PSA was beginning to creep up again we were upset to be kept waiting.
since November his PSA is rising again 0.6 in November increasing to 1.8 in March and 2.2 in April. Whilst hubby maintains he’s asymptomatic I am noticing a change - weight loss, fatigue, back pain. He has a bone scan on Thursday and CT next Saturday. I know in the grand scheme of things his numbers are still low but it is an anxious time. Hubby is being stoic as always. The big problem I have is the uncertainty- I married a stubborn man who won’t discuss or acknowledge his symptoms and won’t ask for help. Eventually after 9 years we are seeing an impotence nurse specialist who has been great she’s provided reassurance about current situation and possible alternatives - hubby has point blank expressed that he will not pursue chemotherapy- he has a blinkered view having seen the impact chemo had on a work colleague- who I have explained had a different type of cancer and would have had far more aggressive chemo regimen. I think between the nurse specialist and I he is now in a place where he may accept chemo if required.

sorry for the long post - but needed to off load which I can’t do at home.

User

Posted 21 May 2022 at 12:24

Racheljohns, anytime you want to offload, you are welcome. Us ladies have to stick together, men can be so difficult to deal with.

Wishing you all the best, take good care of yourself

User

Posted 21 May 2022 at 13:37

Hi Rachel from another Pompey girl !! ,my OH Gary was 55 at diagnosis 6.5 years ago psa 23 Gleason 9 .

He had early chemo as it had spread to lymph nodes and was incurable. Luckily Gary’s 6 sessions went without any problems and PSA became undetectable quite quickly . He worked all the way through and had minimal side effects. His hair only thinnned slightly but he did lose all his body hair .

As Desperate wife has said ,feel free to offload. There’s always someone to help out with advice .

Best wishes and take care .

Debby

User

Posted 21 May 2022 at 13:38

Hi Rachel,

good to see you posting although obviously not great that the PSA & symptoms are on the up. Things have moved on a bit in the last 9 years and it may be that he doesn't have to have chemo yet anyway - enzalutimide and apalutimide have both been approved by NICE as alternatives to chemo since the pandemic started so it might be that the docetaxel could be pushed down the road a bit?

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

User

Posted 21 May 2022 at 13:40

Originally Posted by: Online Community Member

He worked all the way through and had minimal side effects. His hair only thinnned slightly but he did loseall his body hair .

We were out dancing with a friend on Wednesday night who is 4 sessions down with 2 to go. He has lost all his body hair but has been using the cold cap and kept all the hair on his head. He is also continuing to work through the treatment and said his only real problem has been a sore mouth.

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

User

Posted 21 May 2022 at 17:43

Sorry to see that your husbands PSA is starting to rise again.

My husband sounds a little similar to yours in that he won’t think anything is related to the cancer whereas I assume everything is 🤦🏻‍♀️ he also thinks the same way with regards chemo.

He could potentially be worried about the rise himself which could maybe cause some weight loss and fatigue (this happened to my OH when first diagnosed) also back pain could be something else. Hopefully with his numbers still being very low then these symptoms are not related, fingers crossed you can get some answers soon though. My mind runs away with me sometimes and I constantly fear the worst, the only positive with that is its usually never as bad as I have feared.

Wishing you both all the very best x

User

Posted 14 Jun 2022 at 19:12

Brief update post today’s appointment- thankfully no bony metastasise or further lymph node spread but rather worryingly there are spots on both lower lungs. At present these are very small but due to moving from Norfolk to Portsmouth they’re not sure if this is new although we’ve never been advised of any lung issues previously we are now awaiting more scans.

User

Posted 15 Jun 2022 at 00:02

With treatment within the NHS at least, there is a system one hospital described to me as 'calling over' scan from another hospital, which can sometimes be useful to compare with recent ones when assessing changes. As the small tumours in his lungs are remote from the pelvic area, I wonder whether consideration has been given to removing the affected areas or treating with some SABR.

Edited by member 15 Jun 2022 at 00:08 | Reason: Not specified

Barry

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