Husband just been diagnosed

Hi Caras1 and welcome. Gleason grade 5 I assume, as he’s been put on hormone therapy to put the cancer to sleep, as the consultant has confirmed some escape from the prostate gland - hopefully just into the pelvic area. That’s why he’s having a PET scan.  Radiotherapy should follow in maybe 2-3 months time and is likely to be full pelvic coverage so possibly 37 fractions giving 74 Gy of radiation ️-    I know the waiting is stressful but the time pressure is off whilst they plan. The cancer has been stopped in its tracks and it’s better to kill it with radiotherapy once it’s been weakened and shrunk by depriving it of testosterone.  Who knows?  He may even be treated with brachytherapy boost , as this is a suitable treatment for advanced localised pelvic area cancer.  Check out my story by clicking on the snowy scene.   AW

Hi AW thank you so much for that advice . Sadly it’s grade5  gleeson 9 we’ve been told.    What effect does the hormone therapy have on you ? Is it manageable for him ? c1

Hello Caras1 and welcome from another wife whose husband was diagnosed with advanced metastatic prostate cancer in July 2020 and is still going strong. Here is the official version of what to expect from prostate cancer hormone therapy. 

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/hormonal-therapy-for-prostate-cancer

If the cancer has broken out of the prostate then they need to find out if it has gone walkabout and this will determine the type of treatment your husband will have. There is a very good book which you can download for free explaining the diagnosis process and treatment options for different types of prostate cancer.

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

The hormone therapy will put the cancer into hibernation and shrink the lesion. As your husband is possibly going to be on a curative pathway there are several things he can do to minimise the effects of the hormone therapy with exercise being the first, especially with weight bearing as the drop in Testosterone reduces muscle mass. This will also help with the fatigue which many men experience. It can also cause bone thinning so ask the doctor about calcium and vitamin D supplements. The loss of testosterone can also cause the penis and scrotum to shrink but this can be helped with manual stimulation, drugs to maintain blood flow to the area, and possibly a vacuum pump. My husband found that his libido quickly dropped off and with it erectile disfunction became apparent. He also initially suffered with hot flushes but these were helped with sage supplements. He has also developed a nice pair of moobs -if this is going to worry him then speak to your doctor at the start of treatment as he can provide support either with tablets or irradiation to the breast buds.

The thing to stress is that the side are individual and some men get off lightly. It is usual to start off the hormone therapy with a tablet called Bicalutamide for up to 4 weeks which stops the flare from the longer term hormone treatment he will be put on within a couple of weeks of starting the tablets. This may be an injection every 1, 3 or 6 months. The radiotherapy is carried out once the lesion has shrunk but at the moment it seems to be about 6 months after starting hormone therapy due to NHS constraints.

You are naturally anxious but things do get better once you have a diagnosis and treatment plan. At the moment keep a note of all contacts and dates so that if things start slipping timewise you have a record to use and help keep things on track.

Ask any questions and if you want help in knowing what your options might be then providing information on your profile page can help us to help you with more targeted information. There is help available for both the physical and mental side effects of having a cancer diagnosis so don't suffer in silence - and that means both of you as it is very much a couples disease.

Hi Alwayshope  

thank you so very very much for that info.  I’m delighted  for you that hubby is doing so well - that’s brilliant news.   The links are great too . So useful . 

I know it’s not going to be easy and it’s bumpy journey - yes he’s starting on Bicalutamide once he’s had his pet scan - which seems to be taking forever to get the appointment.   His mood is very low sadly his father died of it - and he’s not sleeping i know it’s early days though.  Still trying to process what’s to come.  
thank you once again for the reply - it’s comforting to know there’s people out there to chat with - C1 

Hi again Caras1 - your father in law may have died from it (or with it, combined with other ailments?) - anyway, treatments have progressed tremendously since then.  We have several Gleason 9 men on here that are being treated with curable intent.  AW

Thank you I’m just so sad for my lovely husband of 47 years xx  I just want to support him . 

I didn’t sleep well or eat well during diagnosis. He (and you) are in that space now, but trust me when I say that this period will end.  Once he starts on the bicalutamide then the cancer stops growing. Don’t be too stressed with the Gleason 9 at this stage: if it’s still in the pelvis then it can be killed by radiotherapy.   AW

Thank you so much . So glad you all understand .   I’m going to be really strong for my darling husband I know.  Thank you  for your support x  

Hello Caras1 

A belated warm welcome to the group from me (been our doing man things -watching football and a beer afterwards) Just to confirm life goes on after a cancer diagnosis.

So welcome to the Gleason 9 Club - I am in my 4th year of my cancer journey - yes a Gleason 9 and on a curative pathway - and one year behind you - we've only been married 46 years later this month!

You are in the right place for help and support - I see you have already had plenty of that so all I will say is that the waiting for a treatment plan is the hardest part of the journey - stick with us ask any questions you want - however trivial you will get an honest answer.

Like  Alpine Wanderer  above if you click on my user name or avatar you can follow my story  - I have had my ups and downs but still here to tell the tail. It would help if you added your husbands journey to your profile (you don't need a novel like mine!!), To do this on your home page, click on the chair - top right, then "profile" then "edit". once you have written something, just click on "save".

I hope the above helps.

Best wishes - Brian.