New to site and PC

Posted by coot33 @coot33, Jun 23 9:14am

I'm new to site and was diagnosed with prostate cancer last week. My father got PC around the same age as me which is 62. My PSA levels have been increasing over the last 7 yrs. Above the norm 0-4. My past urologist kinda played it off and was treating my increased levels as having BPH....My resent level went from 7.7 to 9.4 in a year. My general physician referred me to a different urologist with was a blessing. He sent me to have a MRI of the prostate..which showed a 13cm nodule. I had a transperinal Prostate Biopsy last week where report showed that 3 out of the 12 samples showed cancer cells. At this time. They have been sent to the path lab for future testing to see how aggressive and will be getting the Gleason report in two weeks......what I'm asking is for the last 2 + years I started having Right thigh numbness and tingling with heaviness in leg and pain in right hip. I'm still having this issue with hip pain. All on right side. My physician sent me for MRIs of my lower lumbar spine and hip and the report showed a impingement with spinal stenosis. Had several pain blocks and physical therapy but only temporary relief. Hopefully it's not coming from my PC being aggressive and has spread.... Anyone that has experience any of these issues before being diagnosed with PC. Please let me know. I know I will get results in a few weeks and will be discussing future treatments. I'm praying for all that has been thru this and I hope y'all will pray for me as well. Thanks and I will update my results in a few weeks. Thanks

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tattodice | @tattodice | Jun 23 11:52am

Praying for you! He is our Peace my brother 🙏🏽

coot33 | @coot33 | Jun 23 12:39pm

In reply to @tattodice "Praying for you! He is our Peace my brother 🙏🏽" + (show)

@tattooedgoddess ice . Thanks my friend. I am a believer and I believe in prayer. Praises for you as well 🙏

topf | @topf | Jun 23 12:48pm

I sm confused, they told you that three out of 12 cores showed cancer but could not yet give you a Gleason score?
That said, I would not be too worried. 3/12 is not a very large number and your PSA would be too low for Stage 4 cancer. Was your MRI pelvic or only prostate? In the former case, it eould state that no cancer has been detected outside the prostate. In the latter, there should at least be a statement regarding EPE.

coot33 | @coot33 | Jun 23 1:26pm

In reply to @topf "I sm confused, they told you that three out of 12 cores showed cancer but could..." + (show)

@topf ... Thanks for your reply. The MRI was performed on the prostate only and should one nodule. Said it takes 2 weeks for the Gleason test results. Only been one week since biopsy and results...

jayhall | @jayhall | Jun 23 1:32pm

Welcome to the forum and welcome to the club that no one wants to join. You will be in our thoughts! 🙂 This forum is amazing and we all have different stories to tell with our Cancer Journey! 🙂 I really don't know how I would have made it through my Cancer Journey without the support of this forum! 🙂 Keep us updated.

xahnegrey40 | @xahnegrey40 | Jun 23 1:53pm

well you dont have a heavy tumor load it doesnt appear. However, you did not mention a PET scan which is prob necessary to detect if you have any spread outside prostate such as pelvic lymph nodes...at any rate, your treatment plan will prob be ADT for at least 1 yr and maybe short round of radiation..could be alot worse.

but whatever it is, the ADT will suppress cancer growth and the radiation will zap what is there... I would try not to have surgery- what you have reported doesnt sound like surgery ( rad prosectomy) is warranted. it is ok to ask your oncologist questions and have an opinion..you will know more after biopsy gives you a Gleason score..I would definitely inquire about a PET scan.

coot33 | @coot33 | Jun 23 2:11pm

In reply to @jayhall "Welcome to the forum and welcome to the club that no one wants to join. You..." + (show)

@jayhall Thanks and I will. Why I joined. Need advice and support in this unexpected journey. Best wishes

coot33 | @coot33 | Jun 23 2:31pm

In reply to @xahnegrey40 "well you dont have a heavy tumor load it doesnt appear. However, you did not mention..." + (show)

@xahnegrey40 I am most definitely going to ask for a PET. Thanks for the advice and pray things will turn out good for me and everyone that is going and has gone thru this silent sickness

surftohealth88 | @surftohealth88 | Jun 23 2:33pm

In reply to @coot33 "@jayhall Thanks and I will. Why I joined. Need advice and support in this unexpected journey...." + (show)

@coot33

Wishing you 3+3 gleaosn results or none at all 🍀 !

You will know much more when you get your results and if anything is found you will need to do PSMA scan which will detect with more precision where is the cancer and if is it trying to escape out of the gland.

Also, ask your urologist to send your biopsy samples for genetic testing - so called Decipher. It will detect aggressiveness of your cancer with great precision, better than gleason score. One can have gleason 8 and low Decipher score, so it is very important to know if you will be a good candidate for active surveillance or you need a treatment and how "aggressive" your treatment should be.

Since your father had cancer it would be good to have genetic testing done for mutations that are inherited, like BRCA 1 or BRCA 2 and some others.

Regarding "small tumor burden" it is promising but definitely is not a warranty, and same goes even for scans , both MRI and PSMA. My husband had only 3 samples (of 16) positive and only one as 4+3 , and PSA 7 , but still he actually had very aggressive PC which escaped gland and none of that was seen on any scan : (((. After gland was removed it was discovered that he had 4+5 and small EPE. If you have any of cribriform glands or IDC reported in your pathology, take your cancer seriously and do not wait long for treatment, no matter what is your gleason score. I am not a doctor but I am advising from our personal experience and according to all research papers I read so far.

Once again, wishing you all the best and ZERO "aggressive" features found 🍀 and sending healing thoughts your way 🙏.