Lorraine is a nurse specialist and sex therapist and volunteers here to answer your...
My husband has recently been diagnosed and he immediately started HT but further tests shows the cancer has spread to his bones, today we saw the consultant who said he had two choices, have HT now and chemo at a later date or have HT and chemo now. We were told that the HT would contain the cancer and it really wouldn’t make that much difference if he had chemo now or later, We think he will wait and he will have the chemo later but ...... is that the wisest decision ...... not having to suffer side effects of chemo for at another 12 months appeals to him. Just need to get other perspectives. Thanks
If I were in your husband’s position I might be inclined to start with HT on its own and then check as soon as possible that my cancer was responsive to the therapy (via a PSA blood test). Most people are responsive (their PSA begins to drop). For the minority HT isn’t effective. If the PSA drops this indicates that the HT is holding the cancer at bay and buying time for further treatments. All mainstream cancer treatments (including HT) are likely to generate notable side effects (though they do vary in difficulty to deal with according to the treatment and the person being treated). In my own case I quickly learnt that my cancer WAS responsive to HT, which allowed me time to get used to HT side effects before having to learn how to cope with the various side effects that my chemotherapy later generated. I found this extremely helpful. I have been fortunate in that no spread to my bones has thus far been detected. However, from what I believe I understand, that difference in our situations shouldn’t impact overmuch on your husband’s decision, as HT is I believe the standard first treatment offered to prostate cancer patients with detected spread just as it is for patients such as myself that are diagnosed with locally advanced prostate cancer. I’d like to close this response by wishing you both the very best of luck..
MY husband was diagnosed in January 2018 with spread to the bones and a PSA of 528. He chose to take chemo as the consultant said in his words blast it right away. He was one of the lucky ones who actually didn’t have many side affects. His PSA in June had gone down to 0.05 we remain optimistic that it will stay low before he has to go on to another treatment but the fear is always there. Apart from the first 10 days after each cycle we just lead as normal a life as you can with this illness went out for dinner nights away etc. He started to lose his hair after the first cycle but started to grow back after the third. It’s a very hard journey but take each day at a time and appreciate it. Sometimes it’s always on your mind but just sometimes especially when we are having a day out your inclined to forget and everything seems normal. Good luck to you both whatever you decide. Take Care. Frances
I agree with everything that Jonathan says especially if the specialists are indicating that it doesn't matter if he has the chemo now or at a later date.
Best to have HT first , see what , if any side effects are present and then start on the chemo.
If he has the HT and Chemo together then you won't necessarily know which treatment is causing which side effects.
be interested to know ur husbands psa + gleason score ?
i was diagnosed in january gleason 9 ( 5+4) so very aggressive psa 51
i have spread to pelvic lymph nodes a spot on my pelvis and rib
i saw 2 oncologists and both said with spread its best to hit it early with everything !
so as well as the ht i had chemo as well , the chemo didnt bother me worked everyday through it
yes my hair fell out but i had no sickness , the worst thing was the mettallic mouth that made my food taste crap !
you can only do what u think is best for you . gd luck
Thank you for your replies, today I’m finding it hard to deal, tomorrow will be better. I’m pretty sure he has decided HT first and see where that takes his PSA.
Hi pétanque player.
I note from your last response that today you’re finding it hard, however I like the positive note that tomorrow will be better. Once you’ve started a treatment plan, things usually feel better as you’re now doing something positive to beat cancer. From my own personal observation, my family were hit much harder than myself when I received my diagnosis, so don’t be hard on yourself.
Cant tell you what you should do, that’s totally wrong, however I can tell you about my experience so far. I have locally advanced prostrate cancer. The treatment plan was HT, followed by RT. My RT was delayed due me being unable to pass CT planning prior to RT. I was concerned about this, and was told not to worry as it gave the HT longer to work, before starting RT, particularly as it’s my primary treatment. I then completed 37 sessions of RT.
It was discovered that despite the HT knocking my PSA down from 143 to 5.5, it had started to rise again, so I’m now going through chemotherapy.
Looking back down the path I have trodden, I think, for me, it was better to have done things separately as I was able to observe the side effects with each treatment, and therefore I could deduce what was an earlier side effect, and what was a new side effect. I can also see where the change in treatment, has modified an earlier side effect.
In the mean time I wish you both well, and good luck
you never mentioned what his results were like what was his PSA or his Gleason score or what stage he was given. All these matter as regards wether to hit the cancer with everything now that’s usual HT followed by chemo once the PSA has dropped followed by radiotherapy.
Surprised the consultant never mentioned radiotherapy, whatever your husband decides he will be in good hands once the treatment starts.
please be careful with relying on the psa to guide u through the treatment .
sometimes all is not what it seems !!
my psa was 51 i started ht and chemo it dropped rapidly to 13 then 0.4 and stayed there .
i had a scan after my chemo the onc was very happy 0.3 psa and talked about starting R T next .
he did say he needed to check something out with the scan , so i get a call 4 days later asking me to go into see the onc again !.
the first thing he said was we cant rely on ur psa score to let us know whats going on , despite my psa being low it has spread to my spine and sternum ! .
i'm now on abiraterone as well , considering i'm supposed to have it in my spine/sternum/pelvis and rib i feel fine no pain either .
this has kinda knocked my confidence in my treatment , so i'm going down the alternative route now !!!
keep him positive and active and look at his diet too loads of cancer fighting foods out there , a lot of people swear by fasting too !
research and ask loads of questions too , i asked for a second opinion and went to a cancer centre for that .
I'm so sorry to read of your experience anubis. I also believe that I know enough now not to rely on PSA scores with blind faith. Equally I believe the mission to be rid of prostate cancer requires a total health reboot rather than simply total reliance on cancer industry prescribed chemotherapy, radiotherapy, and surgery. This doesn't mean to say that I am convinced that there is no value in 'conventional' cancer treatments (I am currently enduring HT and chemotherapy), but I also believe that the 'drivers' of cancer need to be addressed simultaneously and that our immune systems need to be determinedly supported. This is a particular challenge with regard to chemotherapy which does so much general damage to our bodies in addition to the damage that it does to our tumours. In itself, it presents a huge threat to our general health, to the extent that it can lead to potentially lethal infections. I don't want in any way to disrespect this forum by posting potentially controversial views with regard to therapies that are currently considered to be 'alternative' but I DO believe that they may warrant serious investigations and might easily in many cases be incorporated within anyone's battle plan for surviving cancer. At the end of the day I believe that many of us might benefit from combining a grateful appreciation for all that our oncology departments are endeavouring to do for us (which DOES have a grounding in solid science) with a healthy and empowering curiosity with regard to complementary therapies. Personally I feel that within my own cancer journey such therapies and approaches are furnishing me with considerable purpose and hope. I really hope that the abiraterone begins to work for you anubis and that you chosen approaches to your illness rove effective for you.
Very best wishes,
Thanks to you all, it helps so much getting others views. My husbands psa was 207, he has had 2 HT and is going for another blood test to see what it is now, he had to have his biopsy in day surgery and so won’t get the result for 2 - 3 weeks. We talked to the nurse at the hospital but still felt undecided and in a quandary what to do - ht for twelve months as long as psa reduces followed possibly with chemo in a year or ht and chemo now. Wanted someone to say do this, we know that won’t happen, his cancer, his decision so he is going to have his 3rd ht injection in November and then ask for chemo starting in the new year, in a way the middle road, can only hope it is the best road.
again thanks for the support it is truly appreciated.
When I posted previously to this thread I didn't know what his psa was, obviously 207 is quite high.
I know that you are waiting for biopsy results, hopefully when u have a Gleeson score and another psa you will be able to make a more informed decision then.
If the Gleeson score showed an aggressive tumour then he may be better starting on chemo sooner rather than later.
Don't forget these are just my thoughts and doesn't mean that I'm right.
Hopefully he'll show Gleeson of 6/7 and a reducing psa, will give u a bit more time to consider.
Hi pitanque player
I think my dad is just a week or so different to your hubby. Dad had his 2nd jab last Tuesday. We have all results psa 145, gleason 8 and confirmation of 3 mets on ribs - nothing in lymphs and tumor itself still in prostate capsule so spread in blood to bones. We have been told (because of low mets) 6 doses of chemo 6 weeks break and then radiotherapy. We were told chemo needs to start within 12 weeks of hormone therapy starting. These decisions were based after receiving ALL scan, blood and biopsy and Gleason results so until you have all of these it's difficult to make a decision. There's obviously a reason they've said chemo can be given later but would be good to ask why and have everything before deciding.
Good luck with it all.
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