New and kind of wondering how worried I should be

waltk · December 10

Sat here trying to figure out how to start this. Figured I would just throw it all out there. It will probably be too long, I tend to give more details than necessary, just like this sentence.

I am 58. Have my health care through the VA. Moved this past summer, out away from any large city, so now have a clinic for primary care and community care for everything other than that. First appointment with new primary care doc was in June. She said my PSA "was a bit elevated" and referred me to a urologist. I was already asking for a urology referral for some urinary issues (I have had two TURPS in the past, the last one about 7 years ago). That referral took until last week for me to finally get to see a urologist (about an hour away, but the closest they could find).

Here is what I find out at that appointment. My PSA is not just elevated, it is at 24.0. That was from labs in August, 4 months ago, and up from 7.6 in February (2024). Previous lab work in November 2023 had it at 5.7. No lab work for PSA for three years prior to that when it was a nice normal 1.14 in October 2020. At the same time, my red blood cell count has been low (just under 4 at all three sets of lab work). My white blood cell count went from low in November 2023 (13.0) to normal in August 2024 (8.5). Urologist says digital exam was "abnormal." Says there is "definitely something there on the right side" which is where I have some discomfort if I sit for too long. Also, before I forget to add it in here, my father had prostate cancer. It was years ago, he had the seed implants and recovered well. He has passed since, but it was not cancer related.

So, I am being scheduled for a biopsy. I know we won't know anything definite until then. The biopsy won't be until late January, as the urologist has to get approval through the VA. We are not telling our children or grandchildren as we don't want them to worry until we know something more definite, especially over the holidays. But I cannot get my mind off it. At pain management yesterday (I have nerve damage, back and neck), my bp was 168/88. It is never more than 120/70. I really do not know how I am going to just wait for the next five plus weeks. I am usually a pretty calm "what will be will be" type guy.

So, I wanted to reach out to others who have been through this and may be able to give me more insight than the "wait until we know more" answers the urologist has to give. Any insight, advice, what have you, will be truly appreciated.

Thanks for reading this far.

Walt

centralPA · December 10

Hey, sorry you find yourself checking out prostate forums. :)

I would HIGHLY recommend you nag your urologist to get an MRI first, if humanly possible. The MRI can pick up signs of lesions, and when they do the biopsy they can use the MRI imagery to guide their sampling, along with taking a bunch over the rest of the prostate.

If your urologist did feel something on the DRE, then maybe it's not so important. Could be an easy targeting job. The biopsy is ultrasound-guided no matter what, and I understand they can see things on the ultrasound that help guide them.

There is a lot of waiting around associated with PCa. The good news is the cancer also is on the slow side, but it is tough on the mental health wondering what is happening. You feel out of control.

The best solution to that is to take control, and that starts with knowledge. highly recommend you use the down time to become a lay expert in PCa. Visit the NCCN prostate cancer site (googleable), and all the others. Learn about phrases like Low, Favorable Intermediate, and High Risk; IMRT, SBRT, RALP, and HDR; and a litany of other stuff. When you meet with a Doc, you should have a good idea of the answers to any questions you ask.

Bottom line, it's a slog not a sprint.

Old Salt · December 10

Yes, as you are well aware, several worrisome signs have been identified. But nothing definitive. In the meantime, it seems important to get that blood pressure down, if possible. Please talk to your doc(s) about that.

You may already know that prostate cancer is slow growing; five weeks of waiting for the biopsy won't matter significantly in the long run. But it certainly is nerve wrecking…

I get the impression that you are pretty far away from a good urology center. Nevertheless, I will mention that a transperineal biopsy is the (safer) way to go these days. Do find out if your urologist is qualified to do those.

I would also suggest another PSA test. Can prostatitis be ruled out?

DaveInAZ · December 10

Definitely get your PSA retested. I have had relatively high PSA counts for a few years, but less than 10, then during a routine physical it spiked to 20. Not too long after had it retested and it was back to 11 (still high). Doc said it a number of circumstances can cause it to spike like that.

Also, like was mentioned before ask about getting an MRI before your biopsy. My two biopsies showed a trace of cancer (3+3 on the Gleason scale) for one of 12 core samples the first time and nothing the second time around. Two years later my Urologist had me get an MRI in advance of a third biopsy. The result was a large legion on my oversized prostate with a PI-RADS rating of 5 (clinically significant cancer likely present).

For me, I had the prostate removed without doing another biopsy since I was told that I would have to wait two months after the biopsy for the thing to heal before either removal or radiation treatment could be performed. At 62 years old and after talking to a radiation oncologist, I decided getting the thing out was best for me. Luckily there was no spread. Am 5 months post surgery and recovery is going good.

Explore all of your options. You, like me, are on the young side for all of this. The discussions here on this message board are a great resource.

JackWest · December 11

I went through most of what you are going through now. Go see your urologist, discuss the next step and then make it happen! For me it was another PSA and the multi point biopsy, as it was very easy and basically painless. Then on to the recommended action. Now just 3 years later that I am told that I'm cancer free at 79.

Most importantly for you, and all men in this situation is to take action and to move on to the next step, whatever it is. Get it done!

Good luck to all going through this. Message me, etc. if you want to chat about it.

Clevelandguy · December 11

Hi,

Was wondering if you have been diagnosed with Benign Prostate Hyperplasia(BPH) which could account for your elevated PSA. As others have stated the next step is the MRI and the data generated from the MRI will be used to guide your biopsy. I had a biopsy through my rectum with no infections and very little pain. After they grade your cancer if you have any, the doctor team will recommend a treatment path. It’s bothersome to me that you stated that you went to the closest Urologist they could find. Even if you have to travel further get the best doctor team you can find along with the best facilities to get the best results. Teaching hospital networks usually offer more leading edge treatments in my humble non medical opinion. If they find an aggressive cancer a PMSA PET scan might be in order to check for cancer spread outside the Prostate. I have included a link to get you some info on treatment types and their side effects.

https://www.cancer.org/cancer/types/prostate-cancer/treating.html

Dave 3+4

Marlon · December 11

waltk, yes it is scary at first. Just note that many of us have experienced those long delays between events. For me, it was 5 weeks from urologist visit (DRE) to MRI, and another 5 until biopsy. Surgery was 3 months after that. Yes it is nerve wracking. I used some of that time to read some books that give more info than you'll get out of a doctor. This book is highly recommended: "Guide to Surviving Prostate Cancer" by Dr Patrick Walsh. It really helps to know about treatment options before you have that post-biopsy visit with the urologist.

And please come back here to this forum whenever you have some questions. There's a wealth of experience being shared here every day.

waltk · December 11

Thank all of you for the information and support. I will take this as a mosey, not a sprint. I will also check with my urologist and the VA to see about options regarding mri / biopsy method, etc. Being under VA health care, and two hours from the closest VA hospital, my options are limited to doctors that will accept VA community care. Given the pay rate from the VA (my lower back ablations were billed around 2k. The VA paid a grand total of 160), not a lot of options out there. I will talk to urology at the VA and see if they might be worth the extra hour drive. I truly appreciate all of you.

tom1953 · December 11

Hey Walt.

I am a Non Hodgkins Lymphoma patient(in remission). I am only jumping in as you are mentioning VA care and VA community care. I am also two hours from the closest VA hospital. Community care works well if you keep in contact with your primary doctor at the VA. I started out with a bone scan and an MRI at the VA, then they referred me to a university orthopedic oncologist through community care, and every referral since for treatment has been done at the community care level. You should not have any issues finding doctors, hospitals, or facilities that take community care. Everyone I have dealt with takes it. You just need a referral from the VA. As for the VA payment to providers, it's administered by a health insurance provider, in my case United Healthcare Optum. The difference is you cannot be billed for copayments or anything not covered. If something is not covered, the provider usually re-submits with the correct terminology and it's covered. Hope all goes well.

centralPA · December 11

@waltk , are you 100% disabled through the VA? Thanks to the PACT act I am, with my PCa presumed caused by my time in beautiful Iraq, Afghanistan, and Africa enjoying burn pits.

I am being seen by a hospital a couple of hours away under community care. There has been no problem with billing or money (freakish, I know).

waltk · December 12

Just a quick post regarding some of the veteran questions.

Yes, I am 100%, permanent and total. Mostly due to nerve damage neck and lower back. I was out before getting to see some of the beautiful countries such as Iraq, Afghanistan, etc. Spent 3 days in Turkey when Desert Storm kicked off helping set up a forward A-10 staging location, but that was it for me. Much respect to our later veterans (and our earlier ones).

I was not aware that I could find my own provider then request them through community care. I really thought my primary care does the referrals, the community care office at my regional VA finds where they want to send me (based on my location), then has that provider contact me to set up an appointment. I will have to look into that. Pretty happy with the providers they have sent me to so far. As far as the urology goes, I liked the doctor. He was informative and straight-up with me. I think it was just think about the wait over the holidays that had me a little too far into my own head. That, and being a bit ticked off that my primary care only saw my psa going from 7 to 24 in a six month period as "a little elevated." Definitely going to be more proactive on reviewing labs, etc myself. For now, time to just be patient.

Thank all of you again.

johnmari · December 13

I think I would see if I could get the biopsy done sooner somewhere else, further away if necessary. And make an appointment with a highly experienced doc who could do a prostatectomy (if the biopsy comes back bad). They can be booked a couple months out too. Just have that appt about 10 days after your biopsy date so you have the results. Could also book a appt with a radiation oncologist to discuss biopsy results. Go to a NIH cancer center. They do more cases and have the experience. The waiting sucks big time. Hope it goes well and the biopsy shows just bph and you can cancel the appts.

rcapostman · December 13

https://csn.cancer.org/discussion/328757/new-and-kind-of-wondering-how-worried-i-should-be

Hello, I would make sure you are getting the closest but best urologist using community care. Then get retested. I am 6 months post radical prostatectomy. My psa was only 7 with no symtoms. oh yeah Im 63. So far VA has covered everything. Ask fot a pet ct scan it will light up anywhere you have cancer cells but at least you will know. Its a personal choice on treatment options after diagnosis depending on cancer growth and spread. My wait was about 4 months but i can bet some of you BP problem is stress. I chose to have it all removed cause after having everyone in my immediate family die from some type of cancer I wanted it out of my body. If you do that just be aware of the long term side affects. It was a no brainer for me I wanted to live longer. So no more erections and still dealing with the incontinence but at least that is slowly getting better. I am in a stable marriage for 44 years and my wife just flat out told me she did not care she wanted me to hang around for many more years; she is the best of me. Get treated I can never understand men who would risk death because they cant get a hardon anymore. I guess if your in your 30s or 40s it is more important. I wanted to see my grandkids and great grandkids grow. If you need me im here to talk anytime. Be smart, be safe

NYguy99 · December 14

Unfortunately sorry to welcome you to our group. If you want, please read my post … RU just diagnosed and confused. Use this time to educate yourself and what questions you will need to ask. The hardest part of prostate cancer is that you, the patient, needs to decide whether to have surgery or radiation. But please keep in mind, the survival outcomes are VERY favorable. Please keep us informed and let us know if you need any futher info

Steve1961 · December 15

here is my 2 cents they do an MRI first most of the tim and why they do send you for an MRI first ….OK they don’t want to needlessly put you through biopsy and the want to use the MRI for more accuratecy so given your PSA and given that they felt something on the DRE if you do have a tumor in there most likely they’re going to find it with a biopsy then after that, they will send you for MRI to make sure that has not spread outside the prostate so I would bug them. I would definitely ask them for MRI but like I said, I guess your hands are tied with the VA good luck. Hopefully everything will work out for you. I’m sure it will .

New and kind of wondering how worried I should be

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