Dad's diagnosis

[StaceyMac]

Hi everyone, not really sure what I'm after with this post, but just feel a bit lost.

My dad has been diagnosed with prostate cancer. I live far away so haven't been able to attend appointments sadly and my parents are both bad at asking questions, so I don't have all the relevant information.

We're in the UK. Bone scan clear (very pleased about that!), MRI found lymph node spread, and biopsy has been done.

As it stands, they haven't found out the gleason score or the location of lymph node spread (my mum thinks just around the prostate). Today he had his first hormone injection. He will have another in 4 weeks, another 4 weeks after that and then another 6 months after - no mention of radiotherapy or other treatments yet.

Does that sound about right in terms of treatment? Has anyone been through a similar injection schedule? Does this treatment sound about right if lymph node spread as extended around the body?

All of the above has happened in the last 24hours so it's been a crazy time. I'm going to try and get more info from them/the nurse, so I do apologise for being vague.

I appreciate any comments

[Justfor_]

The four week injections are Firmagon. This is backed by the fact that he had not been given any tablets (Bicalutamide) for any initial Testosterone flare. After that, he will be switched to Luprolide 6 month injections. IMO, it is correct that they started the hormone treatment without wasting any time, as when lymph nodes are detected invaded on the MRI (criterion is their enlarged size) the case is a bit progressed. If you can afford a PSMA PET CT by going privately, NHS will hardly approve, I would advise you to be your next step. Good luck and please calm down. Like your father, there are 1000s of men here that ultimately die of old age and not prostate cancer.

[God_Loves_Me]

Hormone Injections every 4 weeks make sense. I agree with doctor. Only one advice, Please schedule appointment with radiations oncologist.. It is important to have proper team that include oncologist, radiations oncologist , primary care and urologist.

[Tall_Allen]

It sounds like he is starting with Firmagon, and then switching to Lupron after 2 months. It's a good strategy. Lupron will continue for 3 years. In addition, he will get 2 years of abiraterone.

Radiation of the prostate and the entire pelvic lymph node area can begin in about 2 months.

[Tall_Allen]

It sounds like he is starting with Firmagon, and then switching to Lupron after 2 months. It's a good strategy. Lupron will continue for 3 years. In addition, he will get 2 years of abiraterone.

Radiation of the prostate and the entire pelvic lymph node area can begin in about 2 months.

[StaceyMac in reply to Tall_Allen]

Hi, thank you for your response, I appreciate it. Do you know why he would be started on Firmagon then switch to Lupron? Makes me feel better that you say it's a good strategy, but if you could explain why that would be great. Thank you

[Tall_Allen in reply to StaceyMac]

Sure. Gonadatropin Releasing Hormone (GnRH) is released by the hypothalamus and signals the pituitary to signal (with Luteinizing Hormone) the testicles to produce testosterone when levels are too low. GnRH stops signaling when testosterone (T) levels are too high - called "negative feedback."

Lupron is a GnRH agonist, which means it causes a lot of GnRH and therefore a lot of T to be produced. Because of negative feedback, the surge of T causes GnRH to stop signaling and T to stop. So there is a temporary increase in T followed by total stoppage. A T surge can be painful as metastases are activated by it. Some patients take about 2 weeks of Casodex when starting Lupron to prevent the T surge from activating the cancer.

Firmagon is a GnRH antagonist, meaning it directly stops T production without a T surge at first. So, after a month or two of Firmagon, there is no longer any danger of a T surge when starting Lupron.

[StaceyMac in reply to Tall_Allen]

Thank you for a such a detailed response. Again, I appreciate it and it all makes sense.So my dad has already had his first firmagon injection (2 in 1), he then has one a month for the next 2 months (October & November) then he has a 6 month wait before the next one (May - I assume the Lupron potentially). Is this 6 month wait in between a normal time period? Or is it likely his November injection will be Lurpon ?

Any insight is appreciated and again, thank you

[Tall_Allen in reply to StaceyMac]

Lupron must be given before the Firmagon completely wears off.

[StaceyMac in reply to Tall_Allen]

I was worried the 6 month gap was too long, so that's reassured me

[NecessarilySo]

Hormone therapy, e.g. Firmagon and Lupron) will slow the progression of the disease considerably. However, in my experience, it does not stop the disease. I think it is because the cancer cells continue to divide, i.e. multiply, at a much slower rate, in spite of hormone therapy. Removal of the prostate by radiation therapy to prostate was the first step in my case, but I did not have evidence of spread outside prostate like your dad. If scans show the location of lymph node spread, then they can also be treated with radiation. My experience has been that lycopene can defeat the cancer cells, I believe through activation of immune system killer cells. Also I have learned that heat, over 106 degrees F, can kill cancer cells with no harm to normal cells. See my bio for details.

[Chrisbaird]

Hi Staceymac. Uk here Diagnosed 2020 similar situation with lymph nodes PSA 25 I was started on 1000gm Zytiga hormone therapy tables I daily taken one hour before breakfast with 5gm steroid with food. Hormone therapy injection monthly protrap After 4months went onto 500gm Zytiga with PSA reduced to 2 after an other 2 months undetectable 3.5 years later on on same dosage injection ever third months Still undetectable side effects hot sweats at night energy level low but exercise a must hope your dad copes well

[j-o-h-n]

Greetings StaceyMac,

Would you be kind enough to tell us your dear Father's age? Also start adding data to his bio. All of his info is voluntary but it helps us help him/you and helps us too.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Godsheal]

First off don’t let the fear in. I’m pretty much in the same situation PCa spread to lymph nodes and am going on 7 years now. Treatment is lupron backed with Zytiga. Prayers for you all🙏

[GucciPaddy]

Hi StacyMac

I cannot say I have knowledge only my own particular experience with Radiation for Prostate Cancer! I completed 20, 15min sessions during December 2023. And my experience following that was not good! I am still suffering I believe from its effects. However I should say that I am on medication for depression and it's uncertain if this is adversely affecting me, and unfortunately still maybe. Noneone seems to know! My walking and balance is now very bad and was never so in my history. I was alway sound on my feet before the radiation was completed? Whether on this medication or not. So it's obvious this mix is somehow the cause of my trouble and I believe the Oncologist should have known this and not allowed any Radio Therapy to take place!!

I'm not sure my experience is anyway helpful to you in any anyway but I truly wish you well in your treatment road.

In hindsight ,knowing the above, I would not have opted for Radiation in my case despite being encouraged by the Urologist.

[j-o-h-n in reply to GucciPaddy]

Quoting you:

My walking and balance is now very bad and was never so in my history. I was alway sound on my feet before the radiation was completed?

My comment: With my walking and balance I now know how Charlie Chaplin got his walk.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Don_1213 in reply to GucciPaddy]

"However I should say that I am on medication for depression and it's uncertain if this is adversely affecting me,"

What antidepressant medication? Certainly a number of antidepressants list symptoms like you're experiencing as possible side effects, whereas I can't ever recall those symptoms being associated with radiation treatment to the prostate.

[GucciPaddy in reply to Don_1213]

Appreciate your reply, thanks. The anti-depressant I'm on is 150mg of Venlafaxine.

[CAMPSOUPS in reply to GucciPaddy]

Muscle loss, loss of stamina, strength, resulting fatigue and balance issues are a part of must have hormone treatment or die. I assume you had hormone treatment?

[GucciPaddy in reply to CAMPSOUPS]

No hormone treatment. Thanks for replying. P

[spolyu]

Maybe if it's possible, your parents can Skype or FaceTime you at the doctor appointment. I hope this helps.

[Drago101]

Hi Stacey

I live in the US. With me I was recommended to take 1 hormone shot prior to doing Radiation Therapy. I chose not to go with hormone shot. Has Dr discussed what form of therapy other than hormone?

[docbulldog]

I’ve reached a final stage in my battle of Stage 4 PC and question whether I need the ADT 3 month shot. I think getting a little T back during my final months would be good for emotional stability.

The Xgeva shot I receive at the same time is probably a need.

In situations beyond my own, I believe an ADT is very important.