Newly diagnosed

My boyfriend is newly diagnosed ( PSA 27) He will need to have his prostate removed . The doctors have been vague with a few of his questions - even if he can’t produce semen will he be able to feel it and of course he is concerned if he will be able to get an erection after his prostate is removed . Thank you

Gshoe said...
My boyfriend is newly diagnosed ( PSA 27) He will need to have his prostate removed . The doctors have been vague with a few of his questions - even if he can’t produce semen will he be able to feel it and of course he is concerned if he will be able to get an erection after his prostate is removed . Thank you

with a PSA of 27 prostate removal could be his worst move especially if life-altering, permanent side effects are a concern -- and they should be at any age! i'd strongly recommend that he educate himself on prostate cancer and treatments, and quickly.

sorry you guys have to be here but you're in the right place. hoping the best outcome for your BF!

Do your research and talk to plenty people before making a decision. Banging will be different after surgery or radiation but no more semen.

Hi Gshoe and boyfriend, and welcome to the greatest club you probably never heard of before, and most certainly never wanted to join! I myself am a relatively new member, having only been diagnosed (dx) in April 2021 (feels like forever ago!). I am sure you both feel like you are being blasted by a fire hose of information. Allow me to reinforce and expand on the comments of others.

1) DON'T PANIC - and don't rush into any treatment - Prostate Cancer (PCa) is almost always very slow growing, and you can safely take weeks, even months, to learn about yourselves, your cancer, your treatment options (depending on your insurance, location, and means and ability to travel). This is time wisely spent that will probably have no impact on the chance of cure or long term outcome, but your learning will almost certainly greatly improve your satisfaction of treatment outcome.

2) Gather information about your cancer - your boyfriend's biopsy (bx) will show the kind and amount of cancer cells they found in the prostate. Gleason Score (GS) and Gleason Grade (GG) are short cut summaries, but they are based on subjective observations of the cells through a microscope. Getting a second opinion on the bx slides (e.g. from Dr. Epstein and Johns Hopkins) is about $300 (may be covered by your insurance) and well worth the added confidence in your treatment needs. There is also the location of your cancer, is it only in the prostate (localized) or is it starting to spread - Extra-prostatic extension (EPE), Seminal Vesicle Invasion (SVI), Perineural Invasion (PNI), or has it gone far and wide Metastasis or Mets. Some of these can be found in the bx, but more information can be gathered with CT scans, MRIs, bone scans and other more advanced scans.

3) Seek out other (kinds of) doctors. Your boyfriend was probably diagnosed by a Urologist. Most urologists are surgeons - they know how to cure by cutting (Radical Prostatectomy - RP), but that is not the only way to cure PCa. There are many forms of Radiation Therapy (RT) - Internal radiation such as High Dose Rate Brachytherapy (HDR-BT), Low Dose Rate Brachytherapy (LDR-BT aka 'seeds'), External radiation - (there are a whole slew of abbreviations here, IMRT, EBRT, SBRT, ...) using X-rays (photons) or Protons, and with different trade-offs for number of treatments vs dose per treatment. (E.g. Cyberknife or SBRT is simply a short course, maybe 5 treatments, of very high dose per treatment of the same kind of external radiation as 'ordinary' radiation treatment). Because there are these different kinds of RT some doctors and clinics specialize in one or another. You may need to see more than one Radiation Oncologist (RO) to learn about which RT would be best for your boyfriend.

Also a Medical Oncologist (MO) can treat your boyfriend's PCa with drugs, depending on the stage. An initial short course of Androgen Deprivation Therapy (ADT) can 'stun' the PCa, shrink the prostate, and give you even more confidence in taking your time in making the right treatment decisions. And if your PCa has spread well beyond the prostate, then removing the prostate may be unhelpful, since that will not remove the cancer. Instead the MO will treat with systemic drugs.

4. ALL treatment options have side effects (SE). Some are permanent (semen loss from RP), some are probably temporary (but may be permanent), some folks don't get them at all. Some start severely and improve with time and therapy, others develop over time and get worse. SE are of mostly 3 systems - Sexual (loss of Semen production, loss of erections, loss of desire), Urinary (incontinence, difficulty urinating, burning), and Rectal (diarrhea, constipation, blood). Part of your decision process is figuring out which set of side effects you and your boyfriend find least objectionable.

One thing I have found is that the people who are most dissatisfied with their outcomes (particularly long-term SE) are not those with the worst SE, but those who did not explore their treatment options. Learn about your choices and you will know that you did right by yourselves!

5) Finally, bring back all your detailed information here and ask all the questions you can. The folks here are Great! and love to help you find the right path for you and your boyfriend. Every man's journey is unique, but we are all here together! The only one who knows what is right for you is you, but we are all here to help you figure that out. Also, learn how to make a signature with a synopsis of your PCa dx and treatments - it will keep you from having to repeat yourself as you live this lifelong journey here.

Hello Gshoe and welcome. You have already received great advice from others who have responded to you so I won't go into great detail reiterating what they said. I'll just reemphasize a couple of things:

1. "Needs to have his prostate removed" is not necessarily true. There are many options for dealing with prostate cancer and you guys need to explore all of them before making a decision.

2. You need to get educated on our disease. Start with the sticky thread at the top of our forum for newly diagnosed patients.

3. You need to provide us with more info re his diagnosis for us to give you more help/advice. His age and the specifics from the biopsy are the starting place.

Good luck. Stick with us and we will help you get through this. DO NOT make any snap decisions.

Jim

Gshoe,

OK, that's a start. Scans (bone and CT) are part of the diagnostic process. Some things to do:

1. Get copies of EVERYTHING. Keep them in a file of some kind. This is useful so you can make sure that anyone you consult has access to everything.
2. Gleason 7 comes in 2 flavors, if you will: 3+4 and 4+3--which means that either G3 cells are dominant, or G4 are dominant. This is a really important distinction--the more Gleason 4 pattern cells appear, the higher his risk factors are.
3. As we've said before, do get in to consultations with Radiation Oncologists as well. If you're dealing with a Urologist, you're dealing with a surgeon..and he or she is not a specialist in the radiation protocols. It's kind of like asking a Ford mechanic how to fix a Mercedes.
4. We'd still like to know where you are. That can help us point you towards the best locations for treatment near you.
5. If you can, go to the consultation appointments with him. Take notes. Write down questions. It's helpful the next days to be able to go back and look at what was said.

Hello Gshoe - my dear husband was diagnosed a couple years ago with advanced prostate cancer during an routine check up. His initial PSA was 29. Surgery was not an option, unfortunately. We are doing everything possible to make sure he wakes up everyday and plays golf! This forum is wonderful. So many here with great advise. We had at least 4 or 5 - second opinions initially. I hope you are in an area with an excellent hospital! We are in central Ohio and we are using OSU James. We have also used Cleveland Clinic and University Hospitals of Cleveland.

Thank you so much ! It sounds like you have a wonderful attitude and glad your husband is playing golf daily . The problem is my boyfriend is very private about his illness ( even with me ) so I’m trying to gather information with what I know . He is on Long Island with excellent doctors and is currently having bone / cat scans this week to see if it has spread . I’m reading different things- even if it has spread to some degree isn’t this still treatable ?

I strongly hope they will find a drug to get that PSA down. My boyfriend just mentioned that it’s possibly in the bladder . Not sure what that means yet

Sorry you have a need to be here. Though you have found a good place. All member are very supportive and open with their experinces. There are several who follow carefully prostate cnacer issue and are quick to advise in difficult situation and will provide good references and links. you have already been given goo advic by others better than me
One thing to keep in mind this is a complex disease and everyone and situation is different. So take youre time and get multiple opinion from different specialsts and patients on forums like this to help you decide on options.
Cause I am one of the fortunate in having one of the indolent forms that just needs to be monitored cant speak from personal experience on treatment but have educated myself just in case. With a psa of 27 and hearing only surgury mentioned is concerning. With this hig of ps there is a chance of spread and if surgury is done will need to follow up with radiation. So get youre scans and tests done, gather info together and get multiple opinion.

Gshoe,
A cancer diagnosis can be a shocking and confusing situation. I encourage you and your BF to proceed in a stepwise manner as best you can. I encourage you to encourage your BF not to jump the gun. Sometimes guys have the sense they just want to "get the cancer out," and quickly opt for surgery. Since the urologist/surgeon is the first point of contact, guys sometimes just accept the surgeon's suggestion for prostate removal without investigating all options. Doing so can sometimes lead to treatment regret later on.

A PSA of 27 is kinda high, but there are guys here who had much, much higher PSAs and they are doing well. A Gleason 7 score is serious, but it's not nearly the worst. With everything going on, I hesitate to pile more information on top of what you have, but getting a second opinion on the biopsy slides is usually recommended. Instructions are in the sticky thread for the newly diagnosed at the top. Sometimes the Gleason is revised higher, lower, or the stays the same. An accurate biopsy interpretation can be important for treatment decisions.

As the others say, your BF and you can pace yourselves, get the scan results, try to give us as much information as possible, and please, please talk to radiation specialists before making a final treatment decision.

Good Luck!

Thank you ! He is 62 and doing scans this week