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very scared

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User

Posted 10 Sep 2018 at 14:16

My DH is 55. His dad died of prostate cancer at 72 and he has two brothers that have been diagnosed. He gets PSA tests and had a rise from 3.0 is 2014 to 3.2 Oct 2017. He started noticing some symptoms and had mild blood in urine that occurred once so decided to have an evaluation at a major teaching hospital. One tender area on a DRE and a PSA jump to 4 (in ten months) and they have him scheduled for an MRI of his prostate. They said even the 3.2 was to high given the approximate size of his prostate so I am freaking out. Reading that sometimes aggressive cancers don't come with a high PSA. It is all so scary and I can't be scared around him. Any advice for someone new to dealing with all of this?

Edited by member 10 Sep 2018 at 14:20 | Reason: Not specified

User

Posted 10 Sep 2018 at 14:35

Sally

Your husband is doing the right thing following through with the various tests. The waiting game is hard but we all have to go through it. I always think that it is strangely easier to deal with once you know what you're dealing with. Remember the specialist nurses are a great source of support. Do call them if you need them.

Ulsterman

User

Posted 10 Sep 2018 at 15:15

Thanks Ulsterman. The jump in PSA really scared me, it seems like from what I have read that can be a scary sign paired with him having such a strong family history. I am praying it is nothing but if it is that it is super early. He has already said he would opt for surgery if that were an option and it were contained because of the family history. His mom also had breast cancer, so we don't know if that is a factor as well. The urologist did say an infection was possible but his urine and urine culture were clear for anything. They did an ultrasound of his kidneys and a urine flow test along with labs. Those seemed ok although the ultrasound did say his prostate was mildly enlarged. I guess we will know more after the MRI, it did say they were going to sedate him for that. Is it an uncomfortable test?

Edited by member 10 Sep 2018 at 15:17 | Reason: Not specified

User

Posted 10 Sep 2018 at 16:09

Sally, I very much doubt if PCa has reared its ugly head based on your account. If the prostate is slightly enlarged, that could account for the PSA rise. I very much doubt if a sedative would be used for an MRI scan. They are damned noisy and very good ear defenders are supplied but it is just a matter of lying there still and then thinking of England for five minutes or so whilst being propelled back and forth in a big white tube! Nothing to panic about.

User

Posted 11 Sep 2018 at 16:39

Thanks for reply all. Doctors feels strongly that prostate cancer may be the issue. DH is scheduled for MRI and the urologist said expect to schedule biopsy and other tests at that apt. Feeling very sad and scared, not much that I can do though.

User

Posted 11 Sep 2018 at 17:04

Sally, sorry about the situation you find yourself in. With the family history of PCa it does sound like a strong candidate, but try not to get too alarmed about it. With the low PSA, if it is PCa it's probably been caught at an early stage, and localised prostate cancer (ie cancer that's wholly contained within the prostate) is very treatable, and VERY unlikely to kill your husband. His life will be changed, but you'll still have him.

The time between the initial PSA test and the final diagnosis is very stressful, and it may well take two or three months before the final diagnosis is in. What I'd strongly recommend is that you DON'T consult "Dr Google" and that if you have any questions you phone the PC-UK nurses. They are wonderful and kind people who will be happy to talk to you for as long as and as often as you need. This next few months are going to be tough to get through, but you'll feel a lot better when you know what's going on. Uncertainty is the worst thing of all to get through.

Very best of luck to you,

Chris

User

Posted 11 Sep 2018 at 17:09

Originally Posted by: Online Community Member

I very much doubt if a sedative would be used for an MRI scan. They are damned noisy and very good ear defenders are supplied but it is just a matter of lying there still and then thinking of England for five minutes or so whilst being propelled back and forth in a big white tube! Nothing to panic about.

AC

You've had a 5-minute MRI scan? I think the shortest one I've ever had has lasted 40 minutes, and the longest one nearly two hours! But you're right about the process, of course. It's not scary (unless you're claustrophobic), just very, very noisy and boring. Absolutely nothing to be worried about.

Chris

User

Posted 11 Sep 2018 at 17:29

There was a young lady having an MRI scan after me and she was given some sedation as she suffered from severe claustrophobia. I have to admit that of all the procedures I have had the MRI was the worst but only because I am also claustrophobic. The procedure itself is totally nothing to worry about.

All the best

Kevan

User

Posted 11 Sep 2018 at 17:43

Chris, just to clarify, my last MRI scan was of my head only and it was quick, less than 5 mins. A full body scan obviously takes longer but the latest equipment is much faster than the kit used 10 years ago. If it takes 40 minutes, the kit is overdue for retirement!!!

User

Posted 11 Sep 2018 at 17:52

We are in the US, but reading everyones stuff it seems like the process in terms of tests and stuff is basically the same. They said the MRI is a 3T he has to do a bowel prep, which is not fun. They will do this to determine what areas would need to be biopsied. His doctor is at the Mayo Clinic and it seems like a very good hospital. His local doctor kind of blew off his concerns, but because of family history he was reluctant to let it go. I am glad he did not because his PSA did rise substantially in the last months!

Edited by member 11 Sep 2018 at 20:01 | Reason: Not specified

User

Posted 11 Sep 2018 at 17:59

I understand how you are feeling but try not to be scared. This cancer is one that can be treated very well in various ways.

Ask questions and stay calm. Be present at consultations so that you can recall what is said. Be understanding and be prepared for ups and downs. It is a big shock if diagnosed. Lots of hugs needed.

Edited by member 13 Nov 2019 at 22:28 | Reason: Not specified

User

Posted 25 Sep 2018 at 21:38

I want to thank everyone for their supportive comments! The hospital called and they were able to move my husbands MRI up three weeks, so it is scheduled for next Tuesday (October 2nd). the doctor felt that it was very important to do the MRI before a biopsy. He said it can help target the biopsy if it is needed and it can't be done immediately after the biopsy because it can make the image less clear. For those of you who have been through this what will be actually know after the MRI is completed?

User

Posted 26 Sep 2018 at 08:12

Hopefully the MRI will be clear as this will mean he is unlikely to have "significant" cancer. If the MRI indicates an area of concern this will be targeted with a TRUS or Template biopsy.

If the MRI is clear he may still be advised to biopsy, if so you should ask about Template biopsies as these take more samples.

Good luck

User

Posted 03 Oct 2018 at 16:50

Thanks so much everyone. So after the MRI yesterday (he was in the machine for an hour and forty minutes, so I am guessing to was fairly detailed and I do know they did images with and without contrast) the urologist called he said that his prostate was much larger than expected (59cc) and that his PSA while higher than he liked, was technically normal for the size of his prostate. He also did not like that it had went up that much in a year, but since he had what he thought was an infection mid August and was treated with Cipro it could have went up with prostatitis (sp?). The MRI was completely normal, he said their were no target lesions or abnormalities, so not really anything to biopsy. He did say that he wanted him to come back in 6 months and they would do a PSA test and a free PSA test. If those were abnormal and if the PSA was still rising, they would schedule another MRI if nothing showed up there, they would do a template biopsy? Does this sound reasonable for those that have been through this? Is it normal to wait between follow ups like that? He did say doing a biopsy right now was a little like playing darts and while they are usually fine there are risks. For those who have done this does that sound about right?

Edited by member 03 Oct 2018 at 16:53 | Reason: Not specified

User

Posted 03 Oct 2018 at 17:03

I think "let's do it all again in 6 months" is more reasonable than "scan was clear, prostate is large, PSA is normal - go away."

The Mayo is held in high regard internationally- did you ask whether this is their usual practice?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Oct 2018 at 17:18

I did not but I imagine he probably follows procedure . I think he feels like the biopsy would be questionable since the prostate is large and their is no specific target. His PSA was 4, so high but apparently not super high given the prostate size. I also think he is curious if the number was an anomaly because of the possible recent infection. He actually specifically said that he wanted to follow him and that he will schedule his follow up in 6 months. Mayo is a department of surgeons so they typically do not follow urology patients to continue cancer screening, in fact their paper work says they will not follow you. However, this urologist said he would make an exception in this case and watch him due to family history and the urologists general concerns. He said he wants to see him every six months from here on out, he will have monitoring and PSA tests until something changes (I get the impression he was expecting it to as some point). I guess I just worry that they will miss something and it will be wide spread, but do realize that his care is most likely very good. I do know that the doctor told him to expect a biopsy before he completed the MRI, so this was not the news we expected to hear.

Edited by member 03 Oct 2018 at 17:20 | Reason: Not specified

User

Posted 04 Oct 2018 at 17:04

Thank you for sharing your story ndav. I think unless PSA is back down and free PSA is where it should be his physician plans to do a template biopsy. He seems to be more conservative in his practice. My husband said he did not like the idea of a biopsy but it is certainly better than things being undetected. It is all pretty frightening stuff but I feel like his urologist is very competent, but it is still my person so I am scared. Does it appear that your PCa in contained? Best of luck with your upcoming robotic surgery!

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