New here but have battled with prostate cancer since 2021

Hello Ulf Ulfhbg and welcome. Thank you for sharing your journey as it is interesting and informative as to how prostate cancer is tackled in different countries and with all that treatment I hope that the cancer has been dealt with once and for all. I am interested in the Lutetium 177 as my husband has been told that this may be his next treatment for advanced metastatic prostate cancer but I was aware that work was being done using it much earlier after a first treatment recurrence. From your personal experience did you have any side effects and take any extra precautions as I believe you are radioactive for 2/3 days and have to avoid close contact with others? Also is there any reason why you have been switched over to the Orgovyx tablets instead of the ADT injection? 

How do we deal with the anxiety of waiting for test results. Having been on this journey for over 4 years now with 3 recurrences so far it can be difficult as we experience the highs of initial treatment success and then the lows of realising that there is a recurrence. We take each day as it comes and have little treats like going out for an ice cream. We live in Greece which has a lot warmer climate than you so we spend as much time as we can outside and count our blessings whilst we sit with a cup of tea and look out to sea. If I get stressed about things I come on the forum and vent as we can all understand the wobbles. Humour plays a big part in our lives and we usually try to find a funny angle to things. Helping others helps me to understand that I am not alone in this battle. Other people find it useful to join prostate cancer groups but these aren't available where we live. Others find talking therapy helps ease the anxiety.  

We are a friendly group and welcome any questions so feel free to join in with any of the threads.

Good morning Ulf - and another warm welcome to the Macmillan online Prostate Community from me.

You have been on some journey, not only a prostate one - a country to country one too!  It is interesting to read how other countries deal with "our" cancer but at the end of the day your PSA in July 2024 was almost nil and that in itself is a fantastic result.

Waiting for results can be a torture for some with anxiety going off the scale. In my case I don't worry and would think my outlook to waiting for results to be "que sera sera" - "What ever will be will be". - I think I am very lucky in that respect.

Keep us posted as to how you get on next month.

Best wishes - Brian.

Hi Ulfhbg - a very interesting read, Ulf.  I suspect that your very unsympathetic urologist felt that you should have gone for prostatectomy.  However, I think that would have had similar results as the brachytherapy has a similar effect to removal.  The problem was that your cancer had already escaped the prostate into the pelvic area. Perhaps brachytherapy boost would have caught this earlier, but you have now had the external radiotherapy part of that treatment, so you have had the belt and braces radiotherapy now completed.  In addition the array of systemic treatments have battered any micromets of the cancer into submission and you now have a PSA of <0.1.  That’s a great result (achieved in a roundabout way), so good luck on your next PSA reading (my money is on it being <0.1).  I have my latest PSA and complete blood count test coming up on Wednesday and I can empathise about that slow build up of slight nervousness.

AW

Hi Ulfhbg welcome and what a great story.  I have been 7 years with a T3bN1M0 (now M1) and it is a rollercoaster journey, but it did get easier before each consultation. I wish you all the best, David

Hi !!

Thanks for your answer and I have been on other communitys but the tone and friendliness here is outstanding.

So, Lutetium 177 treatment for my part was actually not that dramatic at all. Mostly it was light fatigue, in one of the sessions I shortly had dry mouth but otherwise it was a ’walk in the park’. I was isolated 6 hours directly after injection and before letting me out they checked with dosimeter (i think its called). Going to the toilett and cleaning extra was necessary 2-3 days and when I met up with my family and my grandson I tried to avoid him from a physical perspective. But otherwise, Lutetium 177 treatment for me was actually with the least side effects.

I was on Firmagon and it worked well. But after each monthly injection in the stomach I had 3-4 days of pain and swollenness in the injection area. So, switching to Orgovyx was something that made of ADT easier; all is pills (Orgovyx, Abiraterone, Prednisolone) and I can manage it myself. And if I eventually can take a break from ADT the time for Testosterone to come back (hopefully) is extremly shortened compared to other ADTs. There are some studies saying it’s safer against heart diseases but I haven’t looked into those things as I take good own responsibility in my own health working out, eating and so on. So the choice of Orgovyx was mostly practical.

It comforting to hear you describe how to handle tests, results and so on. I feel like I have been in fight mode for so long so spikes out and gloves. I suppose time will make you try to calm down and instead enjoy what matters most; family, friends, the small stuff and just enjoy living.

If you have any more questions or if I missed out on anything just contact and ones again, I really must say that this community and its members is fantastic.

I will update on progress and keep on fighting this beast with commitment <3

Best regards Ulf

Hi !

Thanks very much for the welcome and I really enjoy being part of this community and its fantastic members.

Yes, like all of us fighting this beast it is really a journey we undertake and I’m happy to share from my Journey in the hope that it can help or give people / fighters some ideas that the toolbox is very big, that prostate cancer can be unique and that you can individualize treatment.

I have been in fight mode i think since 2021 and need to better in find tools / methods to handle the waiting periods. I really hope that I can learn to be more ’what ever will be, will be’ and find satisfaction that I have done us much as I can in fighting my beast

I’ll keep everybody posted and updated and ones again, thanks for the welcome and we’ll keep in Routh. Best of luck fighting your beast.

Best regard Ulf

Hi !

Thanks for your welcome and fantastic that you have been fighting this ugly beast for 7 years now and never stop fighting it !!

I have been in fight mode since 2021 and I’m not really used to wait mode. I suppose in time I will have to calm down and start enjoying the time between tests and so on; start living more and not let the beast have all my focus.

Thanks again for the welcome and keep on fighting !! Will keep each other updated

Best regards Ulf

Thank you so much for the reply Ulf which is very reassuring. My husband is a cuddler and the thought of 2/3 days sleeping in a different bed and no cuddles is a big thing for him - I just have to remind him that it would be short term pain for long term gain. We are lucky to have a medical and radiotherapy oncologist who are very much on the ball and says they still has more tools in the toolbox. At the moment we are just enjoying the fact that hubby is feeling so well since SBRT to distant mets last April. Bloods a week ago were good with a 60% reduction in PSA so we are anticipating the the scans in the next few days will show a reduction, but still an anxious time.

Have you thought about relaxation techniques and mindfulness to help with the anxiety? I know it is not for everyone but worth considering.

We have a thread called No Specific Topic where we talk about anything we feel like from football, doughnuts, holidays and life in general which you might like to dip into and maybe put a different take on things in Sweden.

Hi

Thanks for the welcome and correct. In Sweden the uro and the onco is really two sides of the same coin and for me I it was extremelly frustrating, as a patient, to make ’the right decision’. So you are right, the only way forward for me according to uro was prostatectomy even if they had to inform me that radiation also was an option….

Fighting this beast is on a individual basis and the toolbox is big so I believe treatment should also be more individualized even if you are ’localized, locally advanced, advanced etc’

Yes, I would say that I have really hit the cancer as hard as I can and future will tell if I hit it hard enough for a very long remission or cure.

I’ve been in fight mode since day in 2021 so I’m not very good in being in wait mode. But hopefully I will be able to calm down between test periods (hopefully) and instead enjoy life.

Thanks for a fantastic welcome and we’ll keep in touch and update each other.

Best regards Ulf

Hi !

Do I understand your radiation treatment correctly that you had 24 fractions (conventional or hypofractioned?) and then one HDR brachyboost? Always curious regarding radiation dosage  and it seems that you got a fair amount

Best regards Ulf