My husband , age 57 was diagnosed last week. His PSA levels had increased to 5.8, only coming down a tiny bit after a round of “ just in case it’s prostatitis “ antibiotics. No trouble or frequency of urinating, no difficulty with erection etc. The biopsy showed 2 out of 12 areas biopsied had “ aggressive malignancies “. He was referred to an oncologist and told that his “ hormone therapy” meds would be ordered. That appointment is tomorrow. His bone scan and abdominal MRI was clean.
I have been reading everything I can get my hands on
I think the therapy they have planned is the ADT therapy. My husband had a family history of prostate cancer, as well as some friends who were diagnosed and treated. He says that none of them retained the ability to have an erection or ejaculate after treatment. This is a huge concern of his , and for me as well. However I have a close friend who is dealing with her husband’s prostate cancer, which had spread to his bones before he was even diagnosed. Her concern is that we are fortunate that the cancer is still contained in the prostate, and the most judicious treatment is removing the prostate and using radiation as a follow up to ensure that all cancer cells are eradicated.
My husband is hesitant to proceed with anything. I think he is still in shock that this is really happening My question is, how quickly do we need to act? I’ve already checked the bio of the oncologist out and don’t want to move forward with him What is the best path to take ? How do i rapidly educate us on such an important , life changing decision?? We are fortunate to live in St Louis where we have a hospital and treatment centers that rate in the top ten in the nation. However , I have heard very good things about MD Anderson in Houston and Mayo Clinic. We have insurance and money to do whatever is necessary to have a good outcome. Where do I start? Sorry for the lengthy post. I am feeling almost in panic mode. Thank you in advance for any guidance or info
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First, slow down and I want to say relax, but having had those post-biopsy feelings last year, I know that is difficult, so maybe take a few deep breaths. You've come to a good place to discuss your husband's diagnosis, concerns that you have and all types of treatments that are available for prostate cancer.
Second, everyone will want to know more about the biopsy results: gleason scores, why did they state aggressive (?), as much from the full biopsy report as you care to share.
Third, this is just the start of a rather intense educational process about prostate cancer, so I'll supply a link to get started with:
Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" (fourth edition) is a very good reference which can be read in parts depending upon where you are in your diagnostic and treatment plan(s).
"The NCCN Guidelines for Prostate Cancer include recommendations regarding diagnosis, risk stratification and workup, treatment options for localized disease, and management of recurrent and advanced disease for clinicians who treat patients with prostate cancer. The portions of the guidelines included herein focus on the roles of germline and somatic genetic testing, risk stratification with nomograms and tumor multigene molecular testing, androgen deprivation therapy, secondary hormonal therapy, chemotherapy, and immunotherapy in patients with prostate cancer."
Take your time. Prostate cancer is almost never an emergency. You can take time to learn and make an informed choice. You'll both be living with the consequences of any choice for a long time, so make sure to choose wisely.
In a few months the shock and panic that comes with a cancer diagnosis wears off and you'll be in a far better place to make good choices.
Get multiple opinions! Second or even third opinions.
Start with the pathologist's report from the biopsy. Get a copy. Study it. Get the slides sent to Johns Hopkins, Jonathan Epstein. He holds the only endowed chair in urologic pathology in the nation. He lowered my Gleason score by a full point, which is a very big deal. If the slides went to Epstein first, get them sent to another major caner center like MD Anderson.
See a urologist, a radiation oncologist, and a medical oncologist. If you have the time and money, see more than one of each. Urologists tend to recommend surgery, radiologists like radiation, and oncologists like drugs. All have their place, all have side effects.
You are both correct to worry about loss of erections. The few urologists who are honest about this will admit that erections will never be the same. Even with "full" recovery they are less.
Worse is incontinence. Leaking for years is not uncommon. Some men get full control after some months, some never regain it and wear pads day and night the rest of their life. Impotence bothers you a few times a week, incontinence is 24x7xforever.
Learn the odds. Unless the Gleason grade is high and the cancer very aggressive, the odds of surgery or radiation giving a significant benefit are quite low. The PROTECT trial followed men who had surgery (radical prostatectomy, RP) or radiation therapy (RT) and compared them to men who monitored their cancer but deferred treatment.
They found that if you define success as no metastasis after 10 years, RP had a ~4% chance of success, RT about 3%. Those are dreadful odds, especially when the odds of permanent effects on erections and urinary continence are so high.
PROTECT found NO statistically significant difference between any of the three groups (RP, RT, and surveillance) in terms of overall mortality (death from any cause) or prostate cancer specific mortality (dying from prostate cancer) after 10 years.
The one thing they did find was a significant difference in the quality of life. Men who chose surveillance did better.
The field and available treatments are moving fast. The disease almost always moves slow. If you can wait a few years there will almost certainly be better choices. Take your time, make sure you understand all the options, including the ones doctors don't talk about. Then make the best choice you can with a clear mind. Be ready to live with it.
Table 1 in the linked article directly refutes your following statement:
"They found that if you define success as no metastasis after 10 years, RP had a ~4% chance of success, RT about 3%. "
The data from the table states that the number experiencing metastatic disease for AS was 33 of 545 (~6%), for RP was 13 of 553 (~2.4%) and for RT was 16 of 545 (~2.9%).
So translating these numbers into those who DID NOT have metastasis yields ~94% for AS, ~97.4% for RP and ~97.1% for RT -- not the dire numbers from the quoted statement.
Active surveillance has advantages to those for which it is suited. This is the summary of the PROTECT trial from the linked paper:
"At a median follow-up of 10 years, the ProtecT trial showed that mortality from prostate cancer was low, irrespective of treatment assignment. Prostatectomy and radiotherapy were associated with lower rates of disease progression than active monitoring; however, 44% of the patients who were assigned to active monitoring did not receive radical treatment and avoided side effects.[5] Men with newly diagnosed, localized prostate cancer need to consider the critical trade-off between the short-term and long-term effects of radical treatments on urinary, bowel, and sexual function and the higher risks of disease progression with active monitoring, as well as the effects of each of these options on quality of life. Further follow-up of the ProtecT participants with longer-term survival data will be crucial to evaluate this trade-off in order to fully inform decision making for physicians and patients considering PSA testing and treatment options for clinically localized prostate cancer."
You don't understand the difference between number needed to treat and number who died. Men died in all groups - what matters is the difference. How many men get cut or burned to prevent one case of metastasis compared those those who did neither? That's why the AUTHORS, not you or me, calculated number needed to treat. The inverse of number needed to treat is the absolute hazard, which is where I got my figures.
I understand your hostility. If what I say is true you made a horrible mistake. I wasn't writing to attack you. I was writing to answer her questions. This isn't about you.
I am so sorry. I don’t mean to be the cause of friction in the group. This looks to be a very informed, willing to share all knowledge group. I appreciate all reply’s and feedback. I take responsibility for sorting out the truth for my husband and I. To me this is not a black and white situation, rather , the proverbial shades of gray.
I feel that I must apologize to you, since in hindsight, I should have only posted the final paragraph that I quoted above, which is the summary written in the paper at the link provided by the other poster -- attempting to discuss it further just reopened an old argument on the matter.
I have no hostility toward you or any other poster. I have no idea of a "horrible mistake" that I may have made. We have more in common than differences. Peace.
Exactly, and a whole lot more. It takes time to learn all these things. Fortunately most of us have that time, if we can only avoid being stampeded or make a hasty decision in panic.
Thank you. We have heard this just recently Friends have shared stories of how they felt they had to make a decision immediately and then later learned that they didn’t know much and felt that they had made a poor decision.
Welcome to the forum that no one wanted to join. You are not alone. Much support and many knowledgeable people here. If he has an "aggressive" PCA, then his PSA is > or = to 8..Wait for the scans and if clear, then see what is offered. Brachy Boost therapy has a solid success rate--see below:
or they may offer surgery. At his age, they may offer robotic prostatectomy with nerve sparing surgery. Make sure you have someone who has done a bunch of these...I looked at 2 MD's--both had done over 850 of these...
Let us know, many are familiar with MD's that specialize in this disease...
When I got diagnosed, I had trouble sleeping....I use Melatonin and that may help him if he has an issue.... Good luck...
"The biopsy showed 2 out of 12 areas biopsied had “ aggressive malignancies “."
You did not mention the Gleason Score that was determined. I suspect it is a Gleason 6. Then you would have the option to just observe the tumor since it is a very low risk one. Or do surgery or radiation for peace of mind.
If MRI and bone scan are clear I see no reason for a hormone therapy.
If he is being seen at a top ten hospital and their report quoted "aggresive malignancy" and wanted to start hormone therapy, that just doesn't make sense to surmise its Gleason 6. They also wouldn't routine order a bone scan (and many ins companies) wouldn't cover for low grade pca.
Hopefully though whatever it is its still contained.
She mentioned that there is a top ten hospital in St. Louis, but I understand her husband was send to a local MO now and is not treated in this hospital yet.
My guess was based on the PSA value of 5.8 and two affected biopsy probes. I would appreciate if Goodwife would mention the Gleason score determined with the biopsy.
Then it is a Gleason 9, a completely different situation from what I assumed. Yes, radiation or even surgery are the options now. With radiation I would add 18 months of ADT because it is an aggressive cancer.
You should read the link below -- In my opinion ADT is the last thing I think anyone should do -- after all else fails --- although surgery and radiation offer good chance of success at a cure -- ADT cannot -- that is according to every MO I have spoken to.
In fact ADT may actually speed up the mutation process and lead to faster castrate resistant prostate cancer which is the last thing you want.
Even a 6 to 10 month doubling time of PSA can take anywhere from 10 to 20 years to metastasize.
I just replied on your new post. It's always a good idea to send the biopsy slides for a second opinion from Epstein at Johns Hopkins. He is the Gold Standard. It costs $275.
Thank you. Do i write a cover letter of sorts with the other information and address all to Epstein’s attention? Do I need a referral. I really appreciate your help.
You will get much good advice here about the cancer and its treatment, just as I did.
As for the other concern relating to ED and sexual function, I will recommend you check out the information you'll find on the Memorial Sloan Kettering website. Specifically, search for Dr. John Mulhall who heads up their Male reproductive health department. There are a series of videos he did that lay out a treatment plan that should begin with or even before cancer treatment (information I wish I'd had beforehand). That can help you figure out what the best plan of action is for you and your husband going forward.
Hope you like your husband because he will most likely be around for a long time! Lol. Second opinion is always good in your situation. Try not to worry.
Greeting... you're indeed a Goodwife... Count to 10 then again and again... You have lots of time to make educated decisions. We all have been through the same anxiety that your husband, and you and your family are going through. This anxiety slows down and then races again every time we take "tests" regarding our Pca. You and your husband are not alone and are lucky to find this forum before you take harsh measures. Your husband will be around for a very very long time. Your lives will be different but life is different, so accept it and move on. Live, love and LAUGH. Keep posting here....
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