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

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

coot33 | @coot33 | Jun 23 4:21pm

In reply to @surftohealth88 "@coot33 Wishing you 3+3 gleaosn results or none at all 🍀 ! You will know much..." + (show)

@surftohealth88 ...Thanks for a very supportive and caring post. I will find out 7/7 what the future will be treating this evil disease. I'm praying for you also. I assume you lost your husband to PC..... I pray not. 🙏

coot33 | @coot33 | Jun 23 4:23pm

In reply to @marlon "Your insurance may decide whether you can get a PET scan." + (show)

@marlon . So true. I also have a Aflac cancer policy I've been paying for over 30 years. Hopefully I can for a piece of mind... thanks

surftohealth88 | @surftohealth88 | Jun 23 4:54pm

In reply to @coot33 "@surftohealth88 ...Thanks for a very supportive and caring post. I will find out 7/7 what the..." + (show)

@coot33

Dear @coot33 thanks for your kind words and for caring 💗 Luckily we caught cancer recurrence on time and he is now preparing for salvage radiation therapy of the pelvic floor and effected lymph nodes. He started androgen deprivation therapy with special medications (so called ADT medications) and his response is very good - his uPSA is now 0.006 which means that his cancer cells are very suppressed and a second punch with radiation should be very successful (*knock the wood ) and hopefully will give him long lasting remission. 🙏

You are new to this disease but you came to very good place and you will learn a lot here - I do not know what would I do without this forum since doctors are often useless or do not give enough information about all possible treatment options or medications. It all seems overwhelming and it is , but luckily nowadays we have so many new treatment options and prostate cancer eradication and control nowadays is really advanced and good. Many patients live long lives regardless of the stage and spread and it was not the case just 7 or 10 years ago.

I always tell my cautionary tale to now patients because I am trying to prevent other people from going through this painful experience and having unnecessary failure in treatment. If I knew what I know today, my husband would have different path. BUT - we learn as long as we live.

Sending you blessings and hugs 🤗

doyourresearch | @doyourresearch | 6 days ago

In what zone of the prostate was the "nodule" found on the MRI? Peripheral Zone, Transition Zone? I am confused regarding the biopsy results. My husband has never gotten biopsy results that didn't include the Gleason score. They said there was cancer found, but didn't give you the Gleason score at the same time?

thmssllvn | @thmssllvn | 6 days ago

Gleason Score [7 or > ?] is needed for approval of a PSMA PET CT Scan.
Aggressivity:
DECIPHER: Genetic biopsy (bx) compared with 1000s of others
ARTERRA: AI compared to bx appearance with 1000s of others
( the data sets that both DECIPHER & ARTERRA used were prior to the general availability, use or reimbursement of PSMA PET CT scans. This may suggest that their results are less optimistic than had they been able to include the scan information. Similarly the Gleason RISK of metastasis prognosis and implied treatment advice should be seen in that context too, i.e. , less optimistic (more aggressive).

If External Beam Radiation Therapy [EBRT] is advised and you accept it: Get a PROSTOX test (MiraDx). It assesses a high or low RISK of DELAYED (months/years) urinary tract symptoms for a Short course 5 (-7) sessions, Moderate course 20x, or a Classic course of 35-40x sessions of external beam radiation. Short term symptoms which self resolve are about the same for any of the three forms.

Unfortunately you probably won't be given an option (if applicable) of low dose brachytherapy ( a/k/a LDR-B / permanent 'seeds'/ Interstitial radiotherapy.) It requires hands on skills not taught or not given enough time to obtain the skill sets needed during specialty training. Whereas it is increasing in Europe it has dropped from 17% to 7%. in the USA. Uncle Sam pays much more for the suboptimal external beam radiation. Studies have shown over 10-15 years the optimal dose LDR-B has the best results. Although most insurers require discussing or offering alternative treatments with equal or better outcomes, most choices given are on the intramural menu. My team head a Surgeon, [Rad. Oncologist (RO) & medical oncologist (MO) the other team members ] let out a belly laugh when I asked about 'seeds', "Ha, Ha Find one!" I did and he had done 10,000 of them. Go to DR. Google for You-Tube videos on brachytherapy if interested in broadening your knowledge and possible future therapy options.

ecurb | @ecurb | 5 days ago

Hello, relax a little. What I read is that: you’re low on the totem pole for PCA severity. It’s gonna be treatable. I was stage 4, lymph node metastasis way back in 2023. I m <.01 today PSA after ADT. 77 years old.

coot33 | @coot33 | 5 days ago

In reply to @ecurb "Hello, relax a little. What I read is that: you’re low on the totem pole for..." + (show)

@ecurb That's why I joined this site. Hearing encouraging stories from people like you that has beat this evil disease. My father was a PC victim. Around my age 62. He lived to be 77 and didn't pass away from PC. . I will find out 7/7 what the Gleason report says and future treatments. Praying for you and everyone that is and has gone thru this bump in the road. Thanks and hang in there 🙏

ecurb | @ecurb | 5 days ago

In reply to @coot33 "@ecurb That's why I joined this site. Hearing encouraging stories from people like you that has..." + (show)

@coot33 heavy Phil/ Jeff Marc are the experts on this forum. They ve had PC a lot worse than I have. I follow their advise a lot.

topf | @topf | 5 days ago

In reply to @coot33 "@topf ... Thanks for your reply. The MRI was performed on the prostate only and should..." + (show)

@coot33 But they were able to give you the number of positive cores? That is strange, never heard that this could be assessed pre-pathology.

coot33 | @coot33 | 5 days ago

In reply to @topf "@coot33 But they were able to give you the number of positive cores? That is strange,..." + (show)

@topf This is all new to me. Doctor called and told me how many positive cores and said they would have to be sent to path lab to see how aggressive they are. Following up in 3 weeks after call