Help please for my brother

Hi really sorry to hear of your brothers diagnoses. I'm a little ahead of your brother having had all tests and scans now & at the stage of choosing type of treatment. I've just started hormone therapy (HT). My understanding is that the role of HT is  to stop and reduce the size of the cancer in the prostate. My cancer is contained within the prostate I don't know about secondary cancer but don't think HT role is reduce pain. He really needs to go either go back to his GO for better pain relief or contact his specialist nurse if he has one yet. Les

Best wishes Les

The HT isn't given to help with the pain, but as a side effect of the treatment, it is likely to reduce the pain at least a little. As Les22 says, HT can shrink the cancer, and that will usually apply to metastases as well.

Exactly what treatment he will have depends on all the scans and tests which are under way; a multidisplinary team will reveiw the results and make a recommendation.

From what you've said, I think HT is a likely part of that treatment, but it's too soon to be 100%.

Meanwhile, if he can take it, suggest he adds in 2x paracetamol every six hours regularly: it can take the edge off the pain, and also reduce the dose of fentanyl that he needs. Same applies to ibuprofen (up to 400mg 8 hourly), again, if he take it. The value of milder pain killers is that they usually have no side effects at these levels, while strong painillers (like fentanyl) almost invariably do, if only fatigue. But they need to be taken regularly to get the benefit, and he needs to be sure he can take them (some people can't).

Thank you Les and good luck with your diagnosis. 

Thank you so much for your helpful reply. I don’t know very much about Prostate cancer but am learning! My husband is a survivor of stage 4 bowel/liver/lung cancer all clear since 2011. I was diagnosed with Ovarian cancer in 2016 and am still in remission. I used Macmillan for both previous journeys and it was a life saver as through it I found a clinical trial which saved my husbands life.

Hi

Bad news about your brother, as others have said HT is to stop the prostate giving out cancer cells, and reduce his PSA, I have an assortment of bone pain, spine, shoulders, pelvis and ribs, I take co codormol but have tramadol as a back up if the pain increases, then there are other pain killers but his doctor needs to prescribe them along with tramadol. 
Just my suggestion tell the doctor of his pain and what relief he can give paracetamol I think is not strong enough always push for something better.

Stay safe

Joe

Hello triplets. I had a similar experience to your brother. Last year I had excrutiating pain in my lower back and hip radiating down my leg. Telephone assessments decided it was sciatica and I was sent exercises which I couldn't do as far too painful. Previously I had written to my Urologist highlighting the pain I was experiencing. After a delay of 2 months he replied he didn't think it was a bone lesion. After persisting I was finally given a mri scan and biopsies which detected prostate cancer that had spread outside of the prostate to the seminal vessels . Bone scan revealed lesions to my right hip. Referred to Oncologist and the treatment he gave me for the lesions was palliative radiotherapy which did help in respect of the pain. I take pain relief as well if required but that original excrutiating pain has not been evident since the radiotherapy.

I hope things go well for your brother. 

Thank you so much BoroG I am very glad to hear your pain has been relieved. That’s my main concern atm the amount of pain he is in. He has just phoned me and has been given his first oncology appointment this Thurs. He says he has been asked to go with a full bladder, is that normal for a first appointment? I wish you well with your own journey.

Hello again triplets. There must be some reason for your brother having a full bladder for his appt. I have been to appts. where they have done a 'flow test' . Also have had scan with a full bladder then scanned again once the bladder has been emptied to see if bladder is being emptied adequately. There again it could be something completely different. Hope all goes well though.

He should certainly go back to his GP for either a change in dosage, or a change of, or add in pain medication for.  Check if your local GP surgery or hospital has a pain clinic as this may also prove to be a good place to start but first stop is the GP for better or more pain medication.

Your brother will probably be offered HT to start with and possibly he will be able to have radiotherapy to where the cancer has spread as this may help with pain and the size of the tumours, He he may also be offered chemotherapy.  It all depends on what is found during the tests and scans he is waiting for.

Now that your brother has been diagnosed it is a good time to bring this up with other close male relatives and friends and encourage them to have regular PSA blood tests.  It is said that if your father or brother is diagnosed with prostate cancer then you are 3 times more likely to also have it.  In my family my Father died with Prostate Cancer at 89 - he actually died of complications from pneumonia.  Luckily both my brother and I were having regular PSA Tests from around the age of 50.  I was diagnosed with Prostate Cancer at 72 - thankfully it looks like they caught the cancer just in time and it had not spread and now after treatment with Hormone Treatment injections and a month of radiotherapy  my PSA has been undetectable for 5 years.  My brother was diagnosed at 71 but with a lower grade cancer and had brachytherapy and again 3 years later his PSA is undetectable.  Unfortunately for my two sons they have a father and two uncles who have/had prostate cancer as their Mother's brother died of prostate  cancer just short of 70 having been diagnosed at 54 with Stage 4 Prostate Cancer and my wife died of ovarian cancer at age 57 after already having had her thyroid removed due to cancer a decade before and her youger sister following behind with thyroid cancer and a diagnosis of ovarian cancer about another decade later - thankfully her sister's cancer was found much earlier so at the moment she is well and enjoying life. Our local Cancer Centre was researching the genetic link between these cancers but I don't know how that research is going - or even whether it has continued during Covid.  Unfortuately my eldest son is experiencing a rise in his PSA at age 58 (yes I was a child bride (groom) at not quite 19 )  If he does go on to get Prostate Cancer I am sure that due to his having regular PSA checks it will be caught early enough to be curable as both mine and my brother's seem to have been - so far.

Absolutely brilliant that you found a trial that saved your husband's life - well done.  You can access a lot of information on the Macmillan site and also from Prostate Cancer UK website.  You can telephone the Prostate Cancer UK Specialist Nurses on 0800 074 8383 for help and advice and maybe to explain some things that have only been discussed in medical jargon.  The help line opening hours are Mon to Fri 9am to 6 pm and on Wednesdays they are open from 10am to 8pm.  They were invaluable to my family and I during my diagnosis as even though I had a hospital keyworker designated to me I could hardly ever contact her - I think I managed to get an answer to an e mail once and never managed to contact her by telephone as she was so very busy - I imagine this situation cannot have got better during and in the aftermath of Covid.  You can also look at the Prostate Cancer UK pamphlets in the folder Prostate Cancer Toolkit on their website as this give all the information you would need  during diagnosis giving details of possible treatment options.

All the best to you and your family.