Prostate Cancer
Posted , 6 users are following.
Sooo about 10 months ago I started having odd tailbone area pain that was worse upon sitting. After a couple months I went to get an MRI done. It showed 2 tiny "lesions" in the sacral bone region about 6-7mm in size. Doctor sent me for a nuclear bone scan - which showed nothing at all. So nothing sinister right?I then went to get a colonoscopy since that's in that area and it didn't reveal anything. So now what? I haven't gotten any proper advice. My pain has persisted all these months. I just spoke to a guy who tells me he has mestasized prostate cancer (which had no symptoms) and it's spread to his pelvis and femur. Said he had a bone scan which also showed nothing. Then had another bone scan which revealed the bone mets. Now I'm freaking out? Should I be getting my prostate examined? I'm 38 yrs old. My primary didn't even mention this to me and it has me p****d. No, I haven't noticed any urinary issues to speak of. If I have cancer that's spread outside the prostate wouldn't I be having issues with my prostate function? I'm gonna go see a urologist. Any advice here? Thanks.
0 likes, 22 replies
auntiebeanie diddy1111
Posted
Hi Diddy, last year I sent my husband to the GP as he kept complaining about low back pain. She examined him and decided on blood tests as well as a PSA test. He had no urinary symptoms. That came back with a raised PSA of 12. He went to fast track cancer clinic. Had an MRI and a biopsy. The biopsy showed low grade PC. One of surgeons upgraded his MRI findings and ordered a targeted biopsy. That showed more cancer in same side. Once prostate was removed the cancer turned out to be in the whole prostate. He has now had two negative blood tests. He was 62 at time of diagnosis. You are young but I would ask for blood tests. It will hopefully be nothing but at least your mind will be at rest. All I will say is my husband is 10months post op. Erections are a problem still and now looking at injections but he has his life to which I am thankful but I would be lying if I said it wasn't an issue.
Good luck.
david41094 diddy1111
Posted
Miklemas diddy1111
Posted
Hi Diddy
Yes, you need to ask for a blood test form to get your PSA (Prostate Specific Antigen) level checked. The normal range goes up to 4, but I have read so much documentation on people with values of 3.5 or less having prostate cancer that 4 seems ridiculously high. Mine flagged up at 4.08 and after a torturous 8 month process, I had a prostatectomy for prostate cancer last October. At your young age, 'normal' would be much less. It should be in the region 0 - 2.5 (40 -49 age group - I haven't found a lower age group) I recently spoke with a young man exactly your age who's PSA was less than 1 and was told to come back if and when it exceeded 1. If your turns out to be above 2, I would definately see a urologist - and if above 1 - I would still see a urologist! The most important starting place in my experience is to ask for anMRI (a multiparamagnetic MRI to be precise - this will show up clinically significant cancer.
In my experience it always pays to be proactive. If you leave it up to the medics you will die early! My GP and a retired urologist, both thought I should wait three months and check my level again. I took their advice and it was then 5.2. The GP gave me a prodabout check (DRE) and said all seemed fine and put me on another 3 month wait. After a week or so I thought this was ridiculous, but as I was on holiday abroad it was two months before I told him this and asked for a referral to a urologist. He agreed but put me on a non urgent list - a 7 week wait. So, all in all, I had almost a 7 month wait to see a urologist since first discovering my abnormal PSA - ridiculous!
You can short-circuit all this rubbish Diddy by making a private appointment with the urologist of your choice and asking him/her to refer you for the MRI. All done and dusted in a matter of days! Best of luck.
anne05147 Miklemas
Posted
Hi Miklemas
What was the outcome to your investigations?
My husband has a PSA of 11 plus and is waiting for another MRI as the first showed 'equivocal' but we had to postpone his appointment for biopsy as in between he had an emergency op for acute appendicitis. We are going for the next MRI next month as his psa had gone down but then up again.
Hope everything worked out well for you. Best wishes. Anne.
diddy1111 Miklemas
Posted
A 7 month wait to see a urologist? What the? I have insurance that doesn't require referrals so I'm just going go to sched an appt to see a urologist straightaway as my GP seems to have his thumb up his a$$. If it takes too long to get a urologist appt i guess I can just go to my primary first. All this info seems very odd. Even if your PSA is very low you can still have cancer? I guess my thing is if the primary concern is mets to the bone and the PSA is low then that's probably not very likely? To spread to bone the PSA would have to high right?
anthony70342 diddy1111
Posted
Not necessarily true about high PSA same for low. But again, cancer is not your friend. A 7 mos. wait is out of the question. You truly have concerns and my suggestion would be to see a urologist ASAP like yesterday. Also, cancer doesn't discriminate against age. Express your concerns when you call around looking for a urologist too. As for your primary, yes, we've been through the "thumb up their butt" too. We just went on our own. Our insurance doesn't require referrals either. Take advantage of that fact.
diddy1111 anthony70342
Posted
So low PSA can still mean cancer and high PSA can mean not? So confusing. Earliest appt I could get with a urologist was Sept 1 as a first time patient. I can get my PSA checked at my primary this Friday so I guess I'll just do that first? What makes my blood boil is when I went to see my primary months ago after a colonoscopy i ASKED him is there anything else down there I need to get checked that could be leading to this MRI popping hot in a couple spots? I even asked should I have my prostate or anything else checked. He said no. Or the bone scan coming up negative made him think it can't be anything sinister. I guess he's so stuck on my 30s age that he's not thinking outside the box.
Miklemas diddy1111
Posted
Normally metastatic cancer yields an extremely high PSA but I have read that in certain rare exceptions, the PSA stays low. These are only around 1% of cases and are a certain type whose name I forget. Definately get your PSA checked before seeing the urologist as he/she will be in the dark and you will no doubt need to see him again when he has the result - a waste of time and money.
Miklemas anne05147
Posted
Hi Anne
Make sure your husband has a multiparamagnetic MRI as a normal one will not be up to the job.
I've been referred to an oncologist who thinks my PSA values post prostatectomy are too high to suggest the op was a total success. She thinks I still have some cancer active, local or metastatic. At present just getting monitored 3-monthly. If I get three consecutive rises they will want to zap me.
anne05147 Miklemas
Posted
thanks Miklemas, as I understand it will be multiparametric MRI as this is what we were going to pay to have done ourselves when they agreed to my husband being included in the study.
So sorry to hear you are still not at the end of this, but wish you all best wishes and a good recovery and hoping you won't get 3 consecutive rises and you can get some good news.
All best wishes Anne.
diddy1111 Miklemas
Posted
Ok so the PSA # will probably tell the tale here. Fingers crossed. Ill tell you what, if that number IS really high I will legit flip out at my primary for not testing me for this sooner. Absolutely ridiculous. Any reason why he wouldn't?? Because I'm not 40 or 50 and aren't p*****g blood? Good lord.
anthony70342 diddy1111
Posted
I understand how you feel believe me. They don't make doctors like they used to. CARING, what's that? Pay your bill. That's how it is now. SAD! But you have to do what you have to do. Again, best wishes to you and keep us posted. Take care.
richard98806 Miklemas
Posted
I am in a similar situation. My first post op PSA was .15. In two weeks I go for my follow up. My Dr. was concerned AND very surprised. We did not go into much discussion about what may be going on and dismissed future treatment by stating, "let's not get the cart before the horse." I have done quite a lot of research and unless I get better results there is a strong probability more tests, scans, etc., will be in order and likely further treatment.
My questions to you are: What was your PSA? If it is worse what test and scans will they recommend? and besides the radiation was hormone treatment mentioned?
Thanks. Hang in there. I know the anxiety of not knowing what is happening. I hoped and thought that after the prostatectomy I would be free of cancer.
Richard
Miklemas richard98806
Posted
Hi Richard
I'm really sorry to hear your news. PSA values are supposed to nadir (reach minimum) around the 3 month mark, so when was yours done? Mine is lower than yours averaging around 0.02 so far. There were two consecutive rises and then a drop. They want me to do two more over the next six months.
Regarding my value, my oncologist thinks it too high and infers I still have active cancer.
Regarding your value, she would therefore think that was too high but would no doubt wish to check the value with one or two further PSA tests before suggesting treatment.
PSA values are subject to error - they are actually centre dependent as the result depends in part on the assay used, the accuracy of the techniques used and also the accuracy achieved by the operators.
However, I am sure you have read that various sources do not consider it to be a biochemical relapse (failure) until the PSA value reaches 0.1, 0.2 or 0.4, depending on the source AND associated with a rising PSA. If your's is constant at around 0.15, I would expect some urologists/oncologists to wish to just monitor you indefinitely - if no further rising trend then nothing much is happening out there. Some, like mine, would no doubt suggest the same if no rise but suggest radiotherapy for three consecutive rises above my current level of 0.02 - X-rays to the prostate bed, daily for around 7 weeks. I read that radiotherapy should begin before a rising PSA reaches 1.0 for a RISING PSA for the best chance of a total cure.
So I guess the question for us both is - is our PSA continuing to rise?
All the best Richard. Keep in touch.
Miklemas anne05147
Posted
Best wishes
Mike
richard98806 Miklemas
Posted
.2 then it is time for action .
I will keep you posted
anne05147 Miklemas
Posted
Take care and keep us informed of your progress. All best wishes for a good outcome.
Miklemas richard98806
Posted
That's good Richard as it will hopefully drop from that value. Keep me posted.