Hormone therapy or surgery? Decipher Genomic score?
My husband is 68 and has localized (we hope) prostate cancer - PSA 9.2 in Sept., biopsy of 17 cores found 13 malignant, 2 of which found perineural invasion, Gleason score 9 (4+5), clinical stage T1c. Based on National Comprehensive Cancer Network (NCCN) Risk Categorization, he is considered high/very high risk. At the time of biopsy, a sample was sent off for a Veracyte Decipher Genomic evaluation and his genomic score was 0.38 on a scale of 0-1. Based on this scale, he is considered low risk and clinical studies indicate that patients with NCCN high risk prostate cancer and Decipher low risk scores have less aggressive tumor biology. Mixed messages on his risk but we are proceeding on the high risk considerations.
My husbands case was presented to a team of doctors (corporate owned hospital) - a urologic surgeon, radiation oncologist and a medical oncologist. Their recommendation was 2 years of hormone therapy - Lupron shots every 3 months + abiraterone daily + prednisone and image guided intensity modulated radiation therapy 5x a week for 5 weeks.
We are overwhelmed and are trying to decide if we want to go the surgical route or radiation and hormone therapy. None of the doctors have mentioned the perineural invasion so I don’t know if that is why they are favoring radiation. Does anyone have knowledge of this? Also, their recommendation of the hormone therapy “cocktail” seems extreme and a bit scary from what I have read about the emotional side effects of Lupron. My husband is a happy guy and I’d hate to see him spend 2 years of his life miserable. Has anyone taken this cocktail?
We are also wondering about taking hormones in the interim should he decide to do surgery until he can get in for surgery? It may be a month or more for availability. Any experience with that?
Thank you for any information!
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At 74 I was advised that I had prostrate cancer, Gleason 9, CR, very high risk and aggressive, spread locally to seminal vehicles. I was put on lupron shot every 3 months and Erleada every 6 months for a 6 months treatment plan , then surgery , then these same drugs for another 6 months. All this started 3 years ago and my PSA is still undetectable. I think that they recommended surgery for me as it appeared that the cancer appeared to be in the prostrate and seminal vehicles area and a low risk that it had spread outside of this area. My surgeon at UCLA advised that ADT before surgery reduced the size of the cancer and gave a better chance of a successful surgery. The lupron and Erleada ADT treatment was manageable although I had side effects of sleep disorder, some depression annd brain fog and hot flashes ( however it was CR aggressive G9 and life threatening ) . I am advised that if and when the cancer returns that I will probably be placed on these same drugs again ( and I am ok with that) plus radiation.
Other men here have had very difficult reactions to the ADT meds but I found then inconvenient and less than pleasant but not terrible. I remember when a family member had cancer and she was on chemo and her experience was terrible and unsuccessful but that was not my experience. Good Luck!
I was on Lupon for seven years and Orgovyx after that for over a year. I never had any emotional issues with it, Never had depression as a problem, some people do have that, but it is not all that common. I was also on abiraterone For 2 1/2 years, It gave me 2 1/2 years of my cancer not coming back (It has reoccurred four times in 15 years).
Orgovyx works just like Lupron, You take a pill once a day instead of a three month shot. When you stop orgovyx, your testosterone comes back quicker than with Lupron.
More common with ADT Are the other side effects of ADT (Lupron, Orgovyx etc.) include hot flashes, memory fog, muscle deterioration, fatigue, a beer belly (weakening of stomach muscles) and other issues. You want to keep active (walking/running) in order to limit the fatigue and do weight training to offset the muscle deterioration that is going to happen.
There are a few solutions to the hot flashes, I had terrible hot flashes constantly, if you become uncomfortable come back and ask for help.
With a Gleason 9 24 months of ADT is highly recommended, It gives the best chance of not having a reoccurrence.
If he has surgery, he will have a hard time getting an erection. There are penis pumps, Injections, And pills like Viagra and Cialis To try and help. If he has nerve sparing surgery, that will be less of a chance of long-term erectile dysfunction. With radiation there is less of a chance of having erectile dysfunction.
Whether perineural invasion is a problem is uncertain. It could mean that there was a good chance of recurrence, or it may not be. Either radiation or surgery can remove the risk it adds, since that usually doesn’t mean it has gotten outside the prostate.
What is surprising that they only want five weeks of IMRT. Most people have more. Are you sure they are not including some SBRT (more intense radiation) as well as IMRT? You should ask the doctors if they are going to radiate the prostate bed along with the prostate. They do this to prevent spread Outside the Prostate, in case it has occurred.
Has he had a PSMA pet scan? It is really important that this be done before he’s put on any ADT drugs. If he has that scan and it shows no metastasis outside the prostate, then the treatment they suggest is pretty normal. If that scan shows metastasis, he may need to have chemotherapy as well.
With a Gleason nine you want that two years of ADT, That can prevent reoccurrence.
Your husband should get Hereditary,genetic testing To see if there’s any genetic issues that could’ve caused his cancer. You can get that done for free at prostatecancerpromise.org
Thank you for your quick response Jeff. I forgot to mention that he did have a PSMA PET and it did indicate that it is localized. I was curious about the combination of hormones and how much impact that would have on him, but maybe that's a double barrel approach to the cancer and worth it and maybe it’s also a common approach?
As for the hereditary genetic testing, is there any benefit to it now since we don’t have any children?
Thanks again!
If he turns out to have BRCA1 or BRCA2 then there is a drug he can use called a PARP Inhibitor that can give more time when Lupron and Zytiga stop working. If He has somatic testing done it can also find BRCA1 or BRCA2 in his blood or tissue and a PARP Inhibitor can be used in that case too.
They even have a drug called Akeega that includes abiraterone and a PARP Inhibitor in a single pill. That might interest his doctor with his having a Gleason nine.
Because of the Gleason nine They will frequently combine the two drugs. Lupron takes the testosterone down pretty low and abiraterone takes it down even lower, Reducing the chance of the cancer spreading or coming back.
One thing to be aware of is that abiraterone Can cause high blood pressure. I went from having no high blood pressure at all to three different pills to manage my high blood pressure on abiraterone.
Some people with pre-existing heart conditions need to go on a different drug.
Thank you!
Thank you, will definitely look into that. Needs to parse through the responses and make careful notes so we can ask the best questions. So thankful someone told us about this website and very grateful that people are offering information about their experiences. Wishing a happy and healthier new year to all!