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Diagnosis of biochemical relapse has destroyed my life

User
Posted 29 Aug 2019 at 14:48

I had a robotic prostatectomy last year - then found this year that PSA had gone up to 0.14 then down to .10 then up to 0.13 when I had a PSMA PET scan.  There was no evidence of Metastatic but some activity in the iliac for which a repeat MRI will be conducted in about a month's time.  I am currently on hormone therapy in anticipation of having salvage radiotherapy early in November. 

This diagnosis has completely done me in mentally - already an anxious person I have become severely depressed, on medication, hard to deal with the diagnosis and the uncertainty over the future.  Sometimes I think if I could find a pain free way to commit suicide I would go ahead with it because the shock and uncertainty is so hard to bear.

I run a business and it is so hard to deal with that at the same time.

I have been to see a psychiatrist and am on all sorts of medication and therapy etc but its terrible - hard to get up in the mornings, and hard to focus on day to day life as I have become a bit of a zombie, and withdrawn from friends and doing things.  Any tips or advice on how to cope would be very greatly appreciated.

 

User
Posted 29 Aug 2019 at 16:47
I can't offer you any suggestions re the depression; I think you have to trust your doctors to get the right balance of meds and therapy and then you will see some improvement.

What I can tell you is that if they are planning on giving you salvage RT, then it must be one of the pelvic iliac nodes that looks iffy rather than a more distant one and they believe they can get at it with targeted radiation. John had salvage RT more than 7 years ago now, and it appears to have been successful; he was in denial when he first had the recurrence but now he only thinks about cancer when the routine PSA test is due. There is life after recurrence ... it might just take a while to get your head round it. Some people say that the cancer coming back is harder to deal with than the initial diagnosis, particularly if they had a surgeon who implied that RP was a sure-fire winner.

It might be easier to think of this as not the cancer coming back but a tiny bit that was left behind; it is very tiny and hads taken a year to even make its presence felt so if left, would probably take many, many years to cause any problems. My dad had a recurrence 15 years post-RP and the surgeon has calculated that it will take another 25 years to kill him so Dad is not having any treatment for the time being (but he is significantly older than you).

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

User
Posted 29 Aug 2019 at 16:54
It took me a long time to get my head rounds things whilst on HT. HT had a big impact on my worldview due to how it works. What helped to start with was realising and accepting that the negative thoughts were not mine. They were in effect the HT speaking. Once you realise that and can distance yourself from those thoughts, you may find it a little easier.

Another idea is, every day, to wake up and make a list of the things you can be thankful for and meditate on that for a short while.

Beyond that, diet, exercise, meditation or prayer, reaching out here to ask and vent also can be really helpful.

Please keep posting and above all, don’t give up. I'm a passionate believer that everyone has it in them to overcome their challenges. It just needs to be done one step at at a time.

User
Posted 29 Aug 2019 at 16:55
Thank you Lyn that's very kind of you to reply. But to give more (very tedious) detail - I was diagnosed with Pca 3+4 last year after my first PSA test at 59 years  - 7.4. Went immediately to urologist and had 3T MRI and biopsy and bone biopsy.  There was no evidence of spread - Had a robotic prostatectomy.  Post prostatectomy pathology confirmed Gleason 3+4 T2+, no surgical margins but the plus being because of a 1mm incision.  No lymph node involvement only 1 lymph node removed though.  PSA results were quarterly 0.09 (3 months after surgery),<0.03, 0.14, 0.10 then I went to see the oncologist, and she did a repeat PSA a month later at 0.13.  Next step was a PSMA PET scan - clear, apart from some tiny subchondral activity in the pelvic iliac bone thought not to be PCa related.  I had an MRI scan which was inconclusive, thought not to be metastatic but  with a repeat MRI due next month which will (hopefully) confirm this since then I have been on Bicalutemide and PSA went down to 0.06 then 0.050, and I have just today switched to the injections to bring the PSA down further.  The plan is that assuming the iliac is not a met, I will have salvage radiotherapy to the prostate bed and lymph nodes, and if it is a met (disaster) to the iliac, the prostate bed and (protectively) the pelvic lymph nodes.  Basically waiting for repeat MRI.  Hard to get my head around this as just fall within the definition of biochemical recurrence with a persistent PSA above 0.1, although the urologist surgeon wanted to wait and see if the PSA rose consecutively or above 0.2 before initiating scans etc.  I dont know whats going to happen but whatever it is it doesn't sound great.  Trying to keep my head above water. 
User
Posted 29 Aug 2019 at 17:01

I had a prostatectomy last year on the NHS by one of the top surgeons in Europe. My six PSA tests subsequently have been undetectable.

Two friends had operations simultaneously privately by similar renowned ‘money no object’ surgeons. Unfortunately, they have both have had recurrence and are on a curative regime of hormone and radiation therapy to kill off the remnants of the cancer, just like you.

They are doing fine and expect the salvage treatment will be completely successful in eradicating the bugger.

I hope once you overcome your psychological difficulties you can put your cancer treatment into context.

Best of luck with your recovery.

Cheers, John.

Edited by member 29 Aug 2019 at 17:04  | Reason: Not specified

User
Posted 29 Aug 2019 at 17:01

I think you need to get some one-to-one support from someone else who knows prostate cancer, and will understand your situation.

Please call the specialist nurses on the number at the top of this page, or Request One-to-one Support on this website.

Another option is to contact a local support group, many of which can do a local one-to-one support session with you with someone who knows prostate cancer first-hand. If you say which town you live in, someone here can point you to a suitable local support group to you.

Of course, we'll help you here too, but I think a one-to-one conversation may significantly help your mental state.

You are miles away from no hope, but also take a note of Samaritans number 116 123 if you feel suicidal.

User
Posted 29 Aug 2019 at 17:02

Thank you Pete - I really appreciate your comments.  Maybe the HT has an effect but I was already climbing the walls before I started taking them.  Now I am on the injections maybe that will affect my brain even more as well as the meds.

User
Posted 29 Aug 2019 at 17:05

Thanks Andy - I did call a specialist nurse but she thought that it would not be a good idea given my mental state to speak to a one to one support volunteer as it might be too hard for them to handle, but she suggested that I go on the forum which is why I am here today.

User
Posted 29 Aug 2019 at 17:08

Cheers John

User
Posted 29 Aug 2019 at 18:17
I think it may help that there are many here in the same boat. My progression was very similar to yours and I have had a positive outcome to my SRT to date. There is a very good chance that his is down to residual cells or very local spread. Assume the best and act as needed as events unfold. The hardest thing I had to get into my head was that the universe unfolds as it needs to and we need to react with our best self to that.
User
Posted 29 Aug 2019 at 18:31

Much appreciated thank you.  

User
Posted 29 Aug 2019 at 18:44
Brothers in arms 😉
 
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