Please Help With Dad's Diagnosis..

Hello KTB KickTheBall and welcome to the family. This is a worrying and frightening time for you and I hope we can help with some of your questions. Your father has been started on his treatment - initially the tablets Bicalutamide are given, normally for 4 weeks which block the cancer from getting at its food (testosterone). The second stage in his case is an injection which he will have every 12 weeks or 3 months depending on which one has been given. This injection works to actually stop the body from producing testosterone. The tablets were given to dampen down the initial flare which the injection can cause when it is first given. These injections work on the cancer no matter where it is in the body and should start to reduce the PSA quickly.

It sounds as if your father has lymphoedema in his legs which can be a symptom caused by the prostate cancer which has spread to the lymph nodes. As the body is trying to fight the cancer it produces a fluid which the lymphatic system clears away but the cancer can block the pathways and so fluid builds up in the lower body. The hormone therapy should reduce the lymph nodes but the lymphoedema might take a little while to improve. In the meantime make sure that the skin is kept moisturised and GENTLE massage can help as well as encouraging foot and leg exercises.

The experts will initially see how the cancer reacts to the first line of treatment and I expect your father will have another blood test to check this before he has his next 3 monthly injection.

In February they will hopefully add in more tablets which, when combined with the injections, act to put the cancer into hibernation. Radiotherapy is not normally offered until at least 3 months after the start of hormone therapy so this is not unusual. The problem with chemotherapy is that it can cause lymphoedema so would not be recommended at the moment.

My husband is also stage 4 and has visceral and lymph node mets. He was diagnosed in July 2020 and is still going strong despite an initial poor prognosis. No one can tell how the cancer is going to react to the hormone therapy or how well your father is going to tolerate it so no one can give you an accurate prognosis. The one thing that will help is a positive attitude.

I have attached a couple of links which might help. The first is on the possible side effects from the hormone therapy.

https://prostatecanceruk.org/prostate-information-and-support/advanced-prostate-cancer/managing-symptoms-in-advanced-prostate-cancer

The second is a book which you can download for free which explains diagnosis and treatment plus might answer some questions, but please ask whatever you like and we will try and help.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

Hi KickTheBall. and a warm welcome to the forum, though I'm so sorry to hear about your dad, and the awful time you are having, which is perfectly normal and familiar to most of us.

Your dads treatment so far ìs what most of us have in the first few months after diagnosis, the pills, anti-androgens, and GnRh (analogues) injections are to stop your dad producing testosterone, which is what the cancer needs to feed on, so no food, the cancer can't grow and hopefully shrinks while giving your dad time to get through any health issues, if possible to try and improve his fitness and give his multi disciplinary team MDT, time to work out the best treatment going forward.

I know the waiting is horrendous, but it's important to give the injections time to do their thing, so when his next treatment starts, the results will be better for it.

My cancer is also in my bones, and I have oedema issues too, which my oedema nurse and specialist lymphoedema massage specialist sort  it for me, if you can't access these through the NHS, like me, I got a referral to my hospice, please don't think hospices are for end of life care only, they are not,  and was able to use theirs. Best wishes.

Eddie xx 

Thank you so much for your kind words and knowledge, it really helped me last night. I have seen it mentioned before but Dr Google really is a scary place. 

I just hope that my dad has many more years left to see me have children. I would really be heartbroken without him here. 

Do you have any useful home remedies that your husband uses for any aches and pains? 

Thanks again. 

Hi eddiel and thank you so much for your reply. It really helped ease my mind of all the worst possible situations. 

To know my dad is going through a similar course of action to many others is comforting and that his care is clearly been thought out. It is just scary at first. 

If you don't mind me asking, how long ago were you diagnosed?

Thanks again. 

Good morning KickTheBall .

Dr Google can be scary so try and use trusted sources like PCUK, Cancer Research and Macmillan. We can point you in the direction of more specific information if you want it and also many will pass on their own experience and you might like to read their story if they have updated them on their profile page - simply click on the picture, chair or cups next to their name.

When men start hormone therapy it can temporarily increase bone and muscle aches and normally the first recommendation is over the counter painkillers. Do you know the source of the pain? If it is from the cancer then the hormone therapy should help and later on targeted radiotherapy is often used.

Exercise helps in most situations but your dad has additional issues with the hip and I would hope that he is seeing a physiotherapist as it is important to do the right type of exercise and for the right time. 

From a personal point of view my husband sees an osteopath on a regular basis and I have been shown how to use a massage gun on him. I believe it is better to try and deal with the cause rather than the symptoms but at times stronger painkillers prescribed by the doctor are necessary.

Hi KickTheBall, you are very welcome, I was diagnosed 30 months ago, I had radiotherapy April 2022, and have been on hormone therapy HT since diagnosis, and 2 days ago had my first treatment change, to a 2nd generation HT (ADT).to take alongside my existing HT, We have been saying for a while, the lack of information you leave hospital with after diagnosis is woeful, but you certainly land on your feet when you find this place, everyone would agree getting a cancer diagnosis is an awful experience for all the family, the not knowing being the worst, can I suggest you get your dad on bone supplements soon, as treatment can weaken them, and some supplements can take 6 months to start working, I'm on bisphosphonates, which help me with pain.

Eddie xx

Eddie has mentioned the biphosphonates and alongside these I would get your father to ask about calcium and vitamin D supplements.

Hello,  We have been away doing the "Christmas" rounds of the family so missed your post when you posted.  This is a very worrying and frightening time for you.  Always best not to google things you really cannot verify the information given it may be out of date or just plain wrong.  Best always to stick to the places like Prostate Cancer UK or Macmillan.  If your hospital has a Maggie's Centre there find out if it has a Prostate Cancer Group meeting there - they usually do and go along and talk to any family members who attend - try and get your Dad to go along and join the group too.  If you need any information about your Dad's condition you should be able to ask his GP so long as your Dad agrees.  You should also be able to talk to his hospital keyworker or cancer nurse if he has one or you can contact Macmillan through this website and also speak to Specialist Prostate Cancer Nurses on the Prostate Cancer UK Helpline.  they were invaluable to my wife and I when I was first diagnosed as I think I only ever got in touch with my Hospital assigned careworker once by e mail to get copies of scans and a report and never managed to get in touch with her by telephone. The prostate Cancer UK Helpline number is a freephone number 0800 074 8383 ad it is open Mon, Tues, Thurs and Friday between 9am and 6 pm and on Wednesdays between 10 am and 8pm.

Now is the time for you and your Dad to spread the word about PSA blood tests for men over 50 to all his male friends and relatives - and yours too, remembering that any close male relatives; sons and nephews are 3 times more likely to develop Prostate Cancer now that they have a close relative who has been diagnosed so should be extra vigilant and get their PSA tested regularly

All the very best to you and your Dad and hope you have a comfortable Christmas