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33 Year Old Husband Referred to Cancer Specialist

User
Posted 18 Nov 2018 at 21:10

Hi Everyone,

I‘m here because I’m concerned for my husband who has been experiencing strange symptoms since May 2018. This post is long, but the short of it is that’s he’s being referred to a cancer specialist for an elevated PSA. He’s 33.

It all started with what he thought was a UTI. He got a urine test and it can back negative except for the presence of Nitrates, which can indicate the presence of a UTI though not conclusive. He was treated with antibiotics  for 10 days. The urinary issue cleared up by he started experiencing this lower left groin pain. He described it as a burning, sometimes tightness thouch very surface-level feeling.Not a deep pain, if that makes sense. He thought it was a kidney stone so we went to the ER. He got an ultrasound and it can’t back normal except for increased  in blood flow in the left testicular tube. He was diagnosed with epididymitis. He was treated with an injectable antibiotic and was told it’s Caused by an STD. Well his culture came back negative. No STD’s. Pain was still present until June. He sees a urologist. Gets urine tests, a prostate exam, all come back normal. My husband was very persistent so the urologist even ordered a CT scan. Those  results came back normal. Suspected a possible hernia and was sent to a hernia specialist. Did an exam and doesn’t think thats it either. Lab work was done in june and then again in August. Also came back normal. The symptoms actually subsided during August so we chalked it up to a muscle pull. Well they came back September. Lower left groin pain and burning pain at the tip of his penis. Goes back to the urologist. More urinary tests that come back normal.

The urologist basically tells my husband it’s anxiety-based. We think it’s probably inflammation and look at a Chiropractor. Well the next day, the urologist calls my husband, sounding concerned, since he had decided to run a PSA test on his urine. It came back elevated so they ordered a PSA blood test and semen test. Semen test came back normal but PSA test came back at 1.1. my husband spoke with the nurse who wasnt overly concerned about this. However, the urologist speaks with my husband and tells him that’s high for his age, and that the most likely diagnosis is prostate cancer! He referred my husband to a cancer specialist. He has an appointment tomorrow.

 

So we’re floored. To go from it‘s nothing to “you probably have cancer“ has caused us a bit of whiplash. I know this post was long and tedious so thanks for reading it.

 

So here are my questions: 

1. What can he expect during this first appointment with the specialist?

2. If the cancer has spread beyond the prostate, would that show up on the CT scan or bloodwork/semen analysis?

3. He had a second PSA of 1.0 a week later to compare baselines.so it went down a little. Is that considered high for a 33 year old? The nurse told my husband she was surprised he was referred to a cancer specialist. Urologist says his PSA should be under .5. Doesn’t think it’s prostatitis since it was soft during the exam.

4. My husband had chronic lower back pain and has for the past 6 years. He attribute it to his sleeping position but could it be related  to cancer? What does that type of pain feel like? He reports it feeling like a muscle stiffness.

 

Thanks for reading. It’s been a rolllerCoaster. Trying to stay optimistic but want to be emotionally prepared so I can support my husBand. Any feedback his greatly appreciated

 

Christine

User
Posted 18 Nov 2018 at 22:13

Hi Christine,

I think it is quite unlikely your man aged 33 has PCa, (as we call it here, as we’re too lazy to type it all out), but no doubt others more knowledgable than me will chip in. Of course even babies can get the “Big C” virtually from birth.

He seems to be a bit of an enigma - isn’t everyone? - He seems to have myriad symptoms of different problems, so obviously that makes a definitive diagnosis much more difficult. I am sure they will work it all out in the end.

I bet you’re glad there was no sign of a ‘dose’ (STD or VD, in old money)😉. Sorry if I offend, but I try to be light-hearted on this forum, as inevitably there is some bad news, but moreover a lot of good news. PSA of <4 is classed by the NHS as normal for a man of his age who does not have PCa.

Has he had an mpMRI scan yet, otherwise everyone’s in the dark? That should be the next best step if not.

How strange for someone to diagnose cancer on the basis of barely any evidence? You will have to wait for a prostate biopsy if that’s what the medics recommend for a definitive answer.

Of course, as far as I know, no one here is a qualified urologist, so as with everything on the internet, put your trust in your medics.

Best of luck for the future. Do let us know how it all pans out.

Cheers, John.

 

Edited by member 19 Nov 2018 at 02:53  | Reason: Not specified

User
Posted 19 Nov 2018 at 02:27

As John says, it can happen but there are very few men of your husband's age who have PCa. Because his PSA is not very high there is still a chance that he has a deep seated infection or other problem such as but not only an enlarged Prostate (BPH). Other reasons for a slightly raised PSA are sex, riding a bicycle or strong exercise/activity for 24 hours or so before the test. It looks like he had a PCA3 test from his urine rather than PSA which is from the blood. The former is possibly a better indicator of PCa but together they are better but not definitive indicators. I think it is much too early to think of spread, indeed there is strong doubt that he may even have cancer. It is difficult not to be anxious when there are are a number of possibilities but it can take a time to get the problem correctly diagnosed but OH is right whatever the problem to press for a diagnosis.

Edited by member 19 Nov 2018 at 17:13  | Reason: Not specified

Barry
User
Posted 19 Nov 2018 at 16:26
Christine, it is rubbish to say your husband's PSA is elevated. It is in the normal range but if you can persuade him to refrain from sex and cycling fir the day before and the day of his next test you will get a better indication of his baseline PSA level. I suspect a bacterial infection. I know he has had an antibiotic but the usual approach to UTIs is to give a broad spectrum antibiotic which quite often will miss the target. Unless a culture is made from a urine sample a best match antibiotic will not be found.

I write as a layman not a medic but I do have past experience of cycling, sex (ah, those were the days...), UTIs and antibiotics with hard to treat UTIs and with my many years of experience of PCa, I would be amazed if your man had this!

AC

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User
Posted 18 Nov 2018 at 22:13

Hi Christine,

I think it is quite unlikely your man aged 33 has PCa, (as we call it here, as we’re too lazy to type it all out), but no doubt others more knowledgable than me will chip in. Of course even babies can get the “Big C” virtually from birth.

He seems to be a bit of an enigma - isn’t everyone? - He seems to have myriad symptoms of different problems, so obviously that makes a definitive diagnosis much more difficult. I am sure they will work it all out in the end.

I bet you’re glad there was no sign of a ‘dose’ (STD or VD, in old money)😉. Sorry if I offend, but I try to be light-hearted on this forum, as inevitably there is some bad news, but moreover a lot of good news. PSA of <4 is classed by the NHS as normal for a man of his age who does not have PCa.

Has he had an mpMRI scan yet, otherwise everyone’s in the dark? That should be the next best step if not.

How strange for someone to diagnose cancer on the basis of barely any evidence? You will have to wait for a prostate biopsy if that’s what the medics recommend for a definitive answer.

Of course, as far as I know, no one here is a qualified urologist, so as with everything on the internet, put your trust in your medics.

Best of luck for the future. Do let us know how it all pans out.

Cheers, John.

 

Edited by member 19 Nov 2018 at 02:53  | Reason: Not specified

User
Posted 19 Nov 2018 at 02:27

As John says, it can happen but there are very few men of your husband's age who have PCa. Because his PSA is not very high there is still a chance that he has a deep seated infection or other problem such as but not only an enlarged Prostate (BPH). Other reasons for a slightly raised PSA are sex, riding a bicycle or strong exercise/activity for 24 hours or so before the test. It looks like he had a PCA3 test from his urine rather than PSA which is from the blood. The former is possibly a better indicator of PCa but together they are better but not definitive indicators. I think it is much too early to think of spread, indeed there is strong doubt that he may even have cancer. It is difficult not to be anxious when there are are a number of possibilities but it can take a time to get the problem correctly diagnosed but OH is right whatever the problem to press for a diagnosis.

Edited by member 19 Nov 2018 at 17:13  | Reason: Not specified

Barry
User
Posted 19 Nov 2018 at 04:09

Hi John,

Thanks for your reply! I too, am relieved of no STD’s and value any kind of humor. I‘m not one to be offended 🙂Funny story: when he was diagnosed with epididymitis, the doctor and intern kicked me out of the room, then proceeded to lecture my husband on how it was probably an STD and that it was his obligation to tell his wife. Basically implying he was cheating haha. We had a good laugh but I also got tested to be on the safe side. 

I‘ll be sure to keep you all posted. He’s going to ask about a MRI during tomorrow‘s appointment. I’ll let you know how it goes.

 

Christine 

User
Posted 19 Nov 2018 at 04:18

Hi Barry,

Thanks for the reply. We are wondering about an infection that hasn’t been detected, or possible BPH. i thought his PSA seemed low too, which is why I’m surprised the urologist told him he thinks it’s cancer. Regardless, I’m curious to see what the specialist has to say. My husband does bike daily, but only 6 miles. He bikes to work since we live in the city. Not sure if it’s enough to affect a PSA level. I’ll definitely keep you posted after tomorrow’s appointment. 

Christine

User
Posted 19 Nov 2018 at 14:44

Hi Christine,

Had you been having a lot of sex prior to his PSA test, if you don’t mind me asking?

In my case, following my prostatectomy earlier this year (I am clear of cancer, apparently😁), it can take up to two years for ‘everything’ to recover following the operation, so being an optimist, I am looking forward to chemically and pneumatically-enhanced rampant sex, sometime around 2020!

Where are you located, UK or USA?

Cheers, John.

Edited by member 19 Nov 2018 at 14:45  | Reason: Not specified

User
Posted 19 Nov 2018 at 16:26
Christine, it is rubbish to say your husband's PSA is elevated. It is in the normal range but if you can persuade him to refrain from sex and cycling fir the day before and the day of his next test you will get a better indication of his baseline PSA level. I suspect a bacterial infection. I know he has had an antibiotic but the usual approach to UTIs is to give a broad spectrum antibiotic which quite often will miss the target. Unless a culture is made from a urine sample a best match antibiotic will not be found.

I write as a layman not a medic but I do have past experience of cycling, sex (ah, those were the days...), UTIs and antibiotics with hard to treat UTIs and with my many years of experience of PCa, I would be amazed if your man had this!

AC

User
Posted 19 Nov 2018 at 16:59

 

Originally Posted by: Online Community Member
Christine, it is rubbish to say your husband's PSA is elevated. It is in the normal range but if you can persuade him to refrain from sex......

I write as a layman not a medic but I do have past experience of....sex (ah, those were the days...) 

😉

 https://youtu.be/aBxPo67mbs8 

 

 

 

Edited by member 19 Nov 2018 at 17:05  | Reason: Not specified

User
Posted 19 Nov 2018 at 17:09

Originally Posted by: Online Community Member

Hi Christine,

Had you been having a lot of sex prior to his PSA test, if you don’t mind me asking?

 

 

I suppose that’s subjective haha, but yes, we have a pretty active sex life. We were intimate the day before the first PSA reading (which was 1.1). We were not during the second one, but he did cycle the day before. Second reading was a 1.0, so lower.

 

 

In my case, following my prostatectomy earlier this year (I am clear of cancer, apparently😁), it can take up to two years for ‘everything’ to recover following the operation, so being an optimist, I am looking forward to chemically and pneumatically-enhanced rampant sex, sometime around 2020!

 

 

I read through your bio and I‘m glad to hear you are clear!  

 

 

Where are you located, UK or USA?

 

 

I’m located in the US in Philadelphia. This was one of the few sites that had a prostate cancer specific online  community. 

Appointment is in 1 hour. Not expecting answers but will be eager to hear any insight and next steps. 

Christine

Edited by member 19 Nov 2018 at 17:13  | Reason: Not specified

User
Posted 19 Nov 2018 at 17:58

Hi AC,

Thanks for your response. Your feedback is reassuring. I thought his PSA was normal too which is why I’m flabbergasted by the urologist’s response. My husband made a list of questions and one of them to ask about the possibilty of an infection. 

 

Christine

User
Posted 19 Nov 2018 at 23:31

As a generalization, clinicians in the USA have a reputation for acting very early, the reason why there are fewer cases pro rata of PCa diagnosed at a later stage. The trade off is that many cases are treated where the PCa would not have caused a problem if left but understandable particularly where affected men are young.

You might also find it helpful to join the PCa forum of this International though largely US dominated large site I sometimes look into and offer and receive occasional info.  'Us Too Prostate Cancer'  one of the forums on https://www.inspire.com/  This PCa forum has almost 20,000 members.

 

Edited by member 19 Nov 2018 at 23:44  | Reason: Not specified

Barry
User
Posted 20 Nov 2018 at 16:18

 So here’s an update on yesterday’s appointment:

Doctor did another DRE and prostate looked normal. Did a PCA3 test. We‘ll know results in an agonizing 10 days. If the results are high, they will do a biopsy.

Doctor thinks my husband’s PSA level was on the high end normal range. He said it’s more important to figure out what is a normal baseline for my husband’s body. So my husband has another appointment in January for amother PSA Test. Doctor thinks it’s very unlikely it would be late stage/advanced due to a normal prosate exam and a clear CT scan in June. Worst case that it would be very early stage if there is even cancer at all. He also thinks my husband‘s lower left groin pain is unrelated.He says reoccurring pelvic pain is not uncommon and recommended Motrin to break the pain cycle. The odds are certainly in our favor. I’ll keep you all posted but may look into a more local forum (I’m from the US) THanks for all of the replies. We’re going to try and have a nice thanksgiving.

User
Posted 20 Nov 2018 at 16:21

HI Barry,

Thank you for the insight. That definitely explains the test the doctor ordered. I’m just glad there’s another step before a biopsy since that’s invasive. It’s in my other post. I’ll definitely check out that website. 

Christine 

User
Posted 20 Nov 2018 at 16:22

Really pleased that you got some good news. It's a long wait for the other results but things do seem to be going in your favoir. Have a fantastic Thanksgiving.

User
Posted 20 Nov 2018 at 16:51
I think your PCa worry will be gone soon. Then you need to start worrying about all his other medical issues😉.

Best of luck.

Cheers, John.

User
Posted 20 Nov 2018 at 19:15
Christine, I really don’t think you need to worry. Pain is not a symptom of localised prostate cancer (and with a PSA that low, it certainly wouldn’t be anything other than localised). Sounds much more like some sort of UTI to me. I recently had a case of epididymitis myself, and that really was painful! Antibiotics cleared it up in a couple of weeks.

Cheers,

Chris

 
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