Surprise metastatic disease - Advanced Prostate...

Advanced Prostate Cancer

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Surprise metastatic disease


Just last Wednesday night, I went to the er with severe back spasm. A ct of the lumber showed suspicious lesions. Blood work revealed a psa of 352. Bone scan Wednesday showed bone Mets throughout and involvement in bladder and trace in the kidneys. I have a biopsy scheduled on Monday and an appt at MD Anderson in Jax on Friday.

I had went to my primary care dr in March and had routine blood work. Unfortunately, the dr told me everything “looked good, see you back in a year” and didn’t inform me of my psa level, which was 9.3

I am 64. And other than a little stiffness in my upper back, I feel fine.

16 Replies

So sorry to hear about the situation, but glad you found this group of support. My story is pretty much the same as yours with a few small differences. My starting PSA was 463 with exetensive bone mets.

Most likely, you will go on androgen deprivation therapy. There are 2 options for a more aggressive approach: early Zytiga (an androgen blocker) or early Docetaxel chemotherapy. You can find out more about these by looking into the CHAARTED, STAMPEDE and LATITUDE trials. I'm guessing your doctor will offer you these options so I it would be good to know before your appointment in my opinion.

I did the early chemotherapy which had very tolerable side effects. Feel free to private message me if you want any more details or have any questions.

Good luck with your appointment and treatment.

BartonKen in reply to gregg57

Pretty much the same. Diagnosed Feb 2018 Whilst in New Zealand. Thought I’d overdone golf practice. Turned out that PSA 500 Gleason 4+5 three vertebrae partially eaten away, one showing spinal cord. Plus, one met on left pelvic area where sciatic nerve goes through the pelvis. The Doctors strongly recommended immediate radiation on those locations- one shot on five consecutive days. Followed up with a Zoldex shot, taken every three months in stomach. Finally got okay to fly home and take up treatment here in BC Canada. I was given a choice of Chemo (Docetaxel) first or Hormone treatment first (Aberitone). I read all I could as well emailed the Oncologist in New Zealand for a second opinion. My choice was kill the little ba......s first. New Zealand confirmed. Subsequently BC Cancer said best choice. I have completed 4 Chemo session, this last being the worst for side effects- dizziness and extreme hot flashes. They have subsided now, 18 days after Chemo. I have tingling in the tongue, neuropathy in the soles of both feet, a wildly changing Systolic when taking my blood pressure, which with dizziness tends to leave me wobbly on my feet. Oh yes, only since Chem #4, Sentive teeth and gums to cold foods and drinks, which makes it difficult to get the stated 8 glasses of water a day. My usual intake is 4 glasses, plus two cups tea and two smoothies wRmed to room temperature. My sinuses constantly drip. My digestive tract has a lots of grumbling, with burps and farts galore, even though I watch my diet to match all recommended foods.. Chemo brain memory loss or befuddlement is ongoing. I’m told it does get better. Two more Chemo to go.

Hidden in reply to BartonKen

I Pray that your suffering fades to a more manageable place. ...

Your doctor should be shot and quartered for not letting you know your psa was 9.3. Malpractice at it's finest.

gregg57 in reply to Bill48162

I think many doctors will not discuss PSA unless the patient asks. When I was with Kaiser, my PSA was the only blood test NOT available on line. In order to get my PSA, I would have to call in and talk to someone.

Bill48162 in reply to gregg57

Gregg you may want to reread his post. His doctor ordered a psa test and it came back at 9.3! Why didn't he follow up on that?

gregg57 in reply to Bill48162

Good question. Sure seems idiotic to me, but I think this has happened to quite a few people.

Emmett50 in reply to gregg57

Yup. My husband had 9+ PSA in July 2016 but was not informed that the test had even been done. After some urinary symptoms, diagnosed in December 2017 with PSA 34 and Gleason 10. Only positive aspect is that he had locally advanced disease with no distant mets. He’s on Casodex and Lupron and had 39sessions of EBRT.

Hidden in reply to Bill48162


Hi Pete same here Doctors told me everything looks good see you next year. I'm sure you've heard the expression everything happens for a reason well in my case it sure did. I lived in Philadelphia all my life and so naturally my Doctors were there when I retired I bought a home in South New Jersey which made me find a new doctor. I was told by the new doctor after he read the same results the old doctor reported on and said what did they doctor tell you ? After his reading I was immediately sent for a test and suggested a specialist. I thank God everyday for the experience and compassionate doctors I now have they truly are saving my life. Diognoses APC, bone Mets, lymph nodes affected.

Cancer is

" Bitch" and over the years I have encountered many of those and never backed down. Fight on Brother. Leo

Hidden in reply to leo2634

That a boy! Leo2634...

hindsight is usually 20/20 but I always get a copy of any lab work or procedure results.

"looked good" is not a result but an opinion. Hard to believe a Doctor would think 9.3 is OK. My PSA was 3.8 when diagnosed and I've seen others on here reporting PSA's lower than 3 at diagnosis. Rate of increase usually tells more than the actual number.

Doctor's bury their mistakes..... When a doctor tells a male "everything is ok" then it's "where's the door and don't get in my way doc I'm out of here"....when he tells a female "everything is ok" women ask "doctor what do you mean by ok?".

It's just Mars vs Venus.

Good Luck and Good Health.

j-o-h-n Saturday 08/18/2018 12:06 PM EDT

Hidden in reply to j-o-h-n

I ve had a few medical mistakes. My main mistake was self induced by my ego not going to the drs until it was almost too late.

I'm so sorry to hear your initial doctor let the PSA slide. Looks like you are still in the process of figuring out where all it is and what grade (stage is IV because there's mets, but grade will come via the biopsy).

My husband, who is 51, was diagnosed in June and has stage IV Gleason 9 (4+5) with very extensive bone mets all throughout the spine and bones (but thankfully no organs; he does have the obvious lymph node mets near his pelvis that is typical of this disease spread). He was put immediately on androgen deprivation therapy (ADT): Degarelix (firmagon) injections plus Zytiga (abiaterone) with a side of prednisone to handle Zytiga side effects. It has been excellent at dropping his PSA and his bone pain stopped literally four days after his first shot. He was then switched to Lupron shots with Zytiga/prednisone, which is working as well (although he's going to switch back to Degeralix on the next shots because Lupron has been giving him some fuzzy-headedness).

Initially, he was offered the firmagon/abi combo and a firmagon/docetaxyl (chemo) combo; his oncologist said studies show that both have equal efficacy. We went with the former because my husband is an avid bike rider and has been training for some century rides coming up. He is doing great with the treatment - no fatigue, can still ride. From everything I have heard, being active really helps with symptoms and quality of life.

I mention all this just to let you know that those two drug combos are available and are seen as the most cutting-edge ADT for stage IV with bone mets and are better than either one alone. However, since you have spread into some organs, there may end up being other things that will also be applied (maybe radiation?).

I also mention all this to let you know that we're all here to support you. We are all walking some version of this path, and we want to support you. Ask any questions and we'll be here to help as much as we can. Take care.

Hidden in reply to spikezoey

I was 53 now 57 so I can relate to him being 51. Early onset as I was. One thing however weird that it’s sounds is by being younger than say 85or 85 he can fight it better .They told me if I was ten years older that they would not even attempt what they did to me because I would not survive it. Sucks at 50 , I want ready to call it in , even sexually I was going full bore. We are chemically altered for life. For me it boils down to giving and receiving love. I wish you both peace of mind and a strong loving relationship. The fact that you are here for him is his saving of grace. What a whirlwind it is!! Take care of each other.

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