Log in
Advanced Prostate Cancer
7,435 members7,585 posts

New to all this. Not even sure what to ask.

Hi all,

I am 52, just diagnosed in February with AdvancedPC. My PSA shot from 3 to 130 in less than 12 months; Gleason 9. Lymph nodes in pelvic area; negative in bone scan. Started immediately (early March) with Bicalutamide and Lupron shot 2 weeks later. I am taking Bicalutamide and Flomax daily (in addition to calcium and D3). My oncologist just recommended switching from Bicalutamide to Zytiga, which I will start today. Had a consultation with radiologist who said my lymph nodes were beyond the effectivity zone for radiation, but it was my choice whether to do the treatment.

I feel the treatment at this point is adequate and understand that future tests (PSA , scans) will tell how it's working. Everything I've read so far confirms this but I guess one question I would pose to you all is whether I should seek a third opinion. I have a very expensive option at UC San Francisco, but I feel like I would rather save that money for future needs. I welcome any thoughts and am already thankful for this group.

23 Replies
oldestnewest

Man, I'd go to UCSF no question...

2 likes
Reply

What is your current PSA? That tells a lot. As far as a 3rd opinion, chances are good you will get a "standard of care" response.

1 like
Reply

Thanks bill. Idk my current PSA (going in for a test in 30 minutes) so I will know in a day or two.

1 like
Reply

You are getting the standard of care. There are some clinical trials you may qualify for that are discussed at the end of this article.

pcnrv.blogspot.com/2017/06/...

2 likes
Reply

Thank you

Reply

All doctors are not created equal and don't settle for a general oncologist that only knows the standard of care protocol. You need to find a specialist in prostate cancer even if it means buying a plane ticket to do it.

Any mention of chemotherapy? Any mention of possible surgery? Any mention of getting your PSA down to .50 or less before even administering any form of a localized treatment? For the Radiologist to say they shouldn't but it's up to you knowing the potential damage they could cause is enough to make me run away.

I had a diagnosis very similar to your's and sought better care than I was being offered. I had disease in pelvic and abdominal nodes and the tumor on my prostate was pushing into my bladder. As of now I have no signs of disease and an undetectable PSA because I didn't settle for the hometown standard of care bs. There are options and it's up to you to make it happen for yourself.

You can check out my profile and posts if you want to see my treatment history. I can give you more details and if you would like any other information just send me a message. It's scary and a lot to take in but this site is a good start. It is a wealth of information with some heavy hitters to help guide you along.

Ron

6 likes
Reply

Thank you Ron.

Reply

If you are relatively near the San Francisco Bay area, you might also find on-going support and local information of all kinds in one of the area Prostate Cancer Support Groups, e.g. the ones that meet in the Mountain View silicon valley area, or the one across the Bay in Walnut Creek, etc.

ustoo.org/Support-Group-Nea...

I am farther away, but I have consulted with UCSF, myself, with folks here:

ucsfhealth.org/clinics/geni...

If you may be looking for Clinical Trials in the Northern California region, these links may be useful:

clinicaltrials.ucsf.edu/pro...

studypages.com/ucdavis/stud...

If you have any more questions about "financial toxicity", please don't hesitate to talk about it. Lots of men here and in other support groups have been down similar insurance and $ paths before, and would be happy to share their experiences and knowledge.

Charles

Reply

Thank you Charles!

Reply

man, you are in deep here, so sorry. You cannot be cured so no point in chopping you up, radiation will also be limited as to what it can do. Your best shot is to find a drug trial and get on it asap. Not sure when you had your last psa test, but sadly, if done at 40 as I support, you might have caught it early enough to get cured. I would keep at the two drugs for 4 months, get monthly psa tests and see what happens, i.e. your psa should lower dramatically, stay on the drugs until your psa stays the same for two months, then take a break, in the meantime, make a bucket list, and get at doing things!!!!! good luck pal

2 likes
Reply

Thank you billyboy3!

Reply

Like many have said, sorry that you are having to face these harsh realities out of the blue. I had a similar experience and was not prepared to be told I had a gleason 9 when I wasn't even aware of any symptoms...at least none that were pointed out to me by my GP.

My suggestion would be to do your homework and learn all that you can before making any additional moves or changes. Read the Prostate cancer survival guide by Dr Patrick Walsh. He covers it all and is head of Prostate cancer center at Johns Hopkins. Go online and do research only on reputable site, such as Johns Hopkins, Mayo Clinic, Sloan Kettering, etc. I have found that the anxiety and fear subsides with time and knowledge. There are a lot of medications that work well, as well as clinical trials. Most drugs work for a period of time and then you start on the next one. Men with some of the statistically worst prognoses have many years of a reasonable quality of life. So while it is not curable once it is systematic, it is treatable and manageable.

Hang in their and do nothing in a panic or haste. I have a medical oncologist who works with consultation from a specialist in prostate cancer, as well as seeing the specialist when needed. this arrangement works well for me. It has to be right for your needs.

Good luck! Keep us posted.

2 likes
Reply

Thank you dmt1121!

Reply

Chillywilly,

My status of disease was almost similar to that of you at the time of diagnosis. Initial psa 70 , Gleason ( 5+4) , with iliac nodes involvement and no bone mets . Started lupron (elegard) and biccalutemide. After 3 months done radiation (IGRT), ,28 fractions and discontinued biccalutemide. 18 months later became castration resistant and added Aberaterone ,+ Prednisone to the treatment. Now thirty months since diagnosis. Recently done orchiectomy and discontinued elegard.

You may take a second opinion from another radiation oncologist for an option for radiation. If radiation is possible, it will do a lot of good in getting rid of cancer from your prostate as well as from your pelvic area.

I wish you all the best in your treatment outcome.

1 like
Reply

Thank you dress2544

Reply

CW: Welcome to the forum. Good folks are here on this blog trying to help one another fight the Pca battle. I recommend a couple of good books on cancer as you journey on this prostate cancer experience: Ty Bollenger, Cancer, think outside the box and Radical Remission surviving cancer- Kelly Turner PhD. You’ll have plenty of time to research such that you’ll learn what’s out here and what’s best for you in terms of available treatments, clinical trials, etc. Third opinion? I was diagnosed with Pca 2013 and I’ve had 7 MD opinions thus far. I think multiple opinions are good and ideally you’ll settle on a doctor that you really trust. Are you just doing androgen therapy of has the doc advised you on a prostatectomy and or IMRT options? My advise is to take your time and research the hell out of this until you find what works for you. It seems that most treatment involves hormonal therapynat some juncture, the question is do you need surgery, IMRT, HIFU, or chemotherapy because of the aggressive type of PCa you may be dealing with. Best of luck to you, Stan AZ/AK.

Reply

Stage 4 here, bone and lymph nodes as well as spine , I would not argue with the doctor, mine went rogue in 3 months. It’s a time bomb, can you afford to gamble with your life ?

1 like
Reply

It seems to me that your oncologist is acting aggressively and consistent with our best knowledge to date. I would save your money. Stelle

Reply

I think you need at least one other medical opinion. From what I understand, it is yet to be clear how sensitive the cancer cells in your case are to ADT. Another medical opinion may suggest to wait 6 months prior to beginning Zytiga or considering RT, the efficacy of which is increasingly called into question for NXx MO PCA. I wish for you every needful blessing and good health.

Reply

Hi I am in the same situation diagnosed last year Gleason 9 age 47 only metatised to lymph in pelvis and chest. I’m not a candidate for radiotherapy and I’ve sought numerous second opinions. I’m on Zytiga and Zoladex and Pred steroid, treatments gone well so far and PSA now undectable. There are more advances made yearly and new medication being trailed all the time, if you respond well to Zytiga you could see your PSA stay undetectable for many years. Check out tommytv on here he’s remained undectable on Zytiga for over 6 years. Dan59 and Big Rich also have really positive journeys and outlook. 👍remember no one knows when their times up so live life to the full.

Reply

Scared.!! Chemo failed my hisband and PSA started doubling right away after last chemo treatment. Put on Zytiga, did not work for him. Ct scan showed lymph nodes pelvic area, operated on. Removed one LN, mutations showed Sam was a canadate for a targated Therapy drug. It's called cometriq. We were told that radiation was not an option. Did any one hear anything about targated therapy verses immune therapy infusions. I'm so worried for him, he's not feeling well, exhausted, little appetite I would appreciate and help on this.

Thank you, and prayers for all!!

Lynn.

Reply

I would be very hesitant to follow "Donjud" post above. You can find a wealth of knowledge in all the great guys and their care givers here. Believe me you'll be around for a very long time and then you will become a valuable resource for future newbies.

GOOD LUCK AND GOOD HEALTH.

j-o-h-n Saturday 04/21/2018 11:26 AM EDT

Reply

Thank you all for your advice, and words of wisdom and encouragement. There is definitely a wealth of information here and I am grateful for all of it. You have given me lots to consider and research. I will for sure be sharing my story in hopes that I will be helpful to others in the future. It feels good to be in your company. Good health to you all!

Reply

You may also like...