Prostate Cancer treatment

FormerMember
FormerMember
  • 6 replies
  • 111 subscribers
  • 4703 views

My husband (59yrs) was diagnosed with Grade 4, unusual, advance, aggressive prostate cancer with a Gleason 8 in January this year.   He's currently on Hormone therapy injections.    We had our first  appointment at Christies in Manchester - the Centre of excellence for cancer care - this week and they informed him that treatment won't start until September then he will be given internal and external aggressive radiotherapy .... Brachy Therapy, 15 x external sessions then radiotherapy for his lymph nodes/glands.

I can understand why the delay in treatment as the longer you're on hormone therapy it helps shrinks the cancer cells and the radio treatment is more effective, but another 6 months is a hell of a long time to wait and I can't help feeling anxious by it all, and as no follow up appointments are planned prior to September, how do I know that the Hormone Therapy is actually working?

Has anyone out there been in the same boat or am I just fretting over nothing  - it feels like a cloud is hanging over us now for the next 6 months!

  • Hello CW, sorry to hear about your OH.

    I didn't have HT myself but my understanding is that you can have HT for up to six months before RT starts.

    I would imagine that the reason your OH is going the full 6 months is because of his stage 4 aggressive disease.

    I understand your concern ref long time to wait until treatment starts but the idea is to get the psa right down to low levels , u didn't say what his psa is?

    You could get your GP to do a Psa during the 6 months so that hopefully u can see it reducing.

    Best wishes

    Steve

  • Hi

    Sorry to read about what's going on with your husband, has he had any scans yet ? Seems strange he was not offered chemo, unless he has a health problem, as I was seen in Withington I know how good they are and really have the patients best interests at heart, did he have a high psa ?

    Take care Joe

  • Hello,

    So sorry to hear of your husband's cancer diagnosis. 

    Hormone Treatment will be given for at least 6 months or more before further treatment starts and can be given for 2 years or much longer after.  I too waited six months for my Radiotherapy to start and was under the care of my GP surgery for that time and for the hormone injections.  I presume your husband is getting his HT at his GP surgery and usually he will be given a PSA blood test before each injection.  The PSA should be on a gradual decrease as the HT continues.  In my case the HT caused the PSA to go down quite a bit in the first 3 months and then even out with not such a great decrease in the last 3.  With some people on monthly injections or having PSA tests more frequently they can even have see sawing test results.   Some people see their PSA decrease drastically in the 6 months and others not so much and this doesn't seem to matter whether the original PSA score was very high or very low amazingly!   All these test results are reported to the consultant and if anything is wrong action will be taken - a different type of hormone can be given or other medication added - this is particularly so if side effects from the particular type of hormone therapy you are given is really bad.   As you already know the HT is to weaken the cancer cells and to stop/decelerate the growth of the cancer.  Check with your GP surgery if your husband will be getting a PSA test before every injection or ask your  key worker at the hospital or consutant's secretary to confirm the procedures.  I would also advise you to look at the Prostate Cancer UK website and have a look at their Prostate Cancer Toolkit pamphlets and any other pamphlets that may have information you need.  You can read the pamphlets on line, download them onto your computer/tablet or ask for them to be posted to you.  If you need further advice I highly recommend calling their Prostate Cancer Helpline and talk ing to their Prostate Cancer Specialist Nurses.  Have a look at the Prostate Cancer UK website for the number and timings - unfortunately they are closed at weekends.  My wife and I found them and their advice invaluable.  If you have a Maggies Centre at your Cancer Hospital then do please go there - such wonderful support can be found there for both the cancer sufferers and their families.  Our Maggies Centre has a Prostate Cancer Group which meets every Wednesday and the men talk to each other about the treatment they are getting and how they are coping and also have a medical professional, benefits advisor or someone of that sort to give them a talk and impart information which may be useful.  The wives/partners and carers also meet up for a coffee, chat and/or grumble and suppoort each other.  Once a  month they also have a "proper" meeting with a medical professional or someone to talk to them.  Maggies also offer other courses such as relaxation, exercise, yoga, a gardening club and a course on living with and after cancer and our centre did a wonder ful 6 week course for life with prostate cancer including exercise and diet.  I definitely recommend the Maggies Centre to you whether you both go, your husband or just you go.  It is a wonderful place to go for help, support and a cuppa and cake.  A lot of people I knew when I was having my radiotherapy went there after their treatment for an hour or so but as we were in the city for that time we made the most of it by going out to shows and such like as we lived in a rural area a long way from the cancer centre at the time.  Another thing I found useful was that the Cancer Centre I went to offered an open evening where we could go and see the radiotherapy machines and talk to everyone concerned with our care there gave a short talk and answered questions on the procedures.  Find out if your cancer treatment centre offers this and go along.

    This is a very worrying time for both of you and you will find that the worst thing about this whole journey is the waiting. The waiting for test results, for scans, for scan results, for treatment, for appointments. 

    Take care of yourselves and each other,

    Des

  • FormerMember
    FormerMember in reply to freefaller

    Hello,

    I’m presently on hormone therapy and will start Radiotherapy soon. I started my hormone therapy on November 5th 2018, and will start radiotherapy on April 1st 2019. That’s a difference of five months. 

    During this period I have had two PSA  tests. My initial result was 143. A test at the end of December gave a result of 5.5. A recent test gave result of 7.5. This shows that my hormone therapy is working. In the meantime I continue to have hot flushes, and mood swings, which are a common side effect of my hormone therapy. This proves that my hormone therapy is still working.

    It’s quite natural to be feeling the way you do. My wife took my diagnosis quite hard, and still worries about me. Have faith in your medical team. Christies, as you say, is a centre of excellence. You’re both supported by dedicated people who will do their utmost to produce the best result possible for your husband.

    I send you both my best wishes for the future

  • FormerMember
    FormerMember in reply to FormerMember

    Hello Concerned Wife,

    I was diagnosed with Stage 4 metastatic cancer in Sept/Oct 2017. The cancer had broken out from my prostate to my Lymph nodes. Because they discovered an issue with my heart, my radiation treatment was postponed for over a year. I commenced radiation treatment last week and I will be getting it daily for at least 8 weeks. My oncology team have me on the six month hormone injection and Arbiraterone to suppress my testosterone and it has worked brilliantly. My PSA is a steady 0.09 each month. The team seen me every 4 weeks and took my bloods to check my PSA and I felt very comforted by this as I knew it wasn't kicking off again. I found the hot flushes from the HT annoying but at the same time, as Flightsim has said, at least you know that the treatment was working. Because I have had to be on the hormone treatment for so long my radiologist is delighted as the planning scans showed that all my tumors reduced dramatically in size and therefore easier for him to blast. If you husband has issues with having to go to the loo a lot, my urologist put me on two different tablets and these have worked brilliantly for me.

    Don't worry about the delay in starting the radiation. As long as he is on the correct hormone medication then he is being treated. My details and the medication the various consultants have prescribed for me are on my profile page. As your ex Prime Minister once said " This is not the beginning of the end, rather it is the end of the beginning " I seem to remember that he won out in the end.

    John

  • FormerMember
    FormerMember

    Hi

    I've read through all these stories and it is interesting that there are different approaches.

    My husband was diagnosed in November 2018 and was put on HT immediately, then started a course of chemo in February (just had his 4th session) 

    PSA was very high but has come down considerably, but his stress has been reduced due to the fact he has started treatment very quickly.

    The support nurse told us that chemo wasn't previously offered right at the start of diagnosis, but that has now changed..im wondering if it depends on which hospital you are under and their approach as there doesn't appear to be a national standard approach

    Good luck with everything x