Father Just Diagnosed G8

Hello - I am posting for my father, my family is in a state of shock as he learned on 1/18 he has PC. I have done preliminary research and it looks like this forum is a great avenue for support and knowledge, so thank you in advance. Some stats from my dad:

Age 69 - VERY fit, works out 5 days a week, health of 60 yr old or younger
PSA 10/16 - 5.1 (noted as high, was told to take test again in a couple months)
PSA 12/16 - 10.7 (Biopsy scheduled)
Biopsy results - 12/12 cores prostatic adenocarcinoma present, GS 8 on all samples, surface area being cancerous ranging from 55% to 100%

We are in the Northern California area and right now he is getting a CT scan today and bone scan in the next week or two with follow up consultation with a urologist in two weeks.

His PSA level not being as high as some others makes me feel a little better but his biopsy report to be honest has me very concerned. He is a fighter and has a positive attitude, knows he's got a rough road ahead of him but not knowing a strategy of how to attack it yet has us nervous. I am telling him he needs to get multiple consultations as I am not sure the urologist he has been dealing with is a specific cancer specialist or not. Any information, experiences of anyone that had a similar biopsy or positive thoughts are much appreciated!

Also, please don't sugarcoat. I'd rather know what your real thoughts are rather than nothing at all or false hope

Post Edited (tinterer) : 1/20/2017 11:35:30 PM (GMT-7)

Thanks Manfred, appreciate the good wishes and advice.

Also forgot to mention his DRE was a slightly enlarged prostate, otherwise nothing notable found.

Thanks for the reply and suggestions Beth, very much appreciated. I have definitely heard great things about UCSF

From one G 8 to another I wish you and your father well. Hopefully the scans will come back negative, but even if they do not there is still hope. The doctors may have to be a bit more agressive. Please take the time to get a second opinion. Remember that every cancer is different and the treatments may be different. That was (is) the case for me. I had surgery (with the removal of 14 lymph nodes), radiation and hormonal therapy. (Most G 8'ers who's cancer has spread to the lymph nodes do not go for/are offered surgery.)

While rare, please know that not all prostate cancers raise your PSA. Chances are that your father does not have one of these very rare forms such as small cell or Ductal. They effect less than 1% of the cases. Look on the biopsy report for the description of the cancer. For example I have Ductal cancer which effects about 0.4% of prostate cancer patients.

Finally please know that while having cancer sucks it does make you appreciate life, family and friends. I hope your father continues living an active life. That is what I am trying to do (just got back from a Scuba trip).

Hello Tinterer and a belated welcome to HW. You are already getting some great advice from some of our most knowledgeable members and I wish you and your dad well.

Sorry you were faced with a post from a member suggesting you leave HW; I have deleted those posts. That is not in the spirit of our forum and I assure you that you are most welcome here. Our members have a lot of support and advice to provide and I hope you will continue to avail yourself of this great forum.

Jim

Update: So we received the results of his CT scan, bone scan is still scheduled for next week. He has an appointment for Feb 10th with Dr. Carroll at UCSF for a consultation. See below for pelvic area results of CT scan:

Pelvis: Bladder is underdistended limiting its evaluation..
Prostate measures 5.2 cm in the transverse diameter contains
right paracentral calcification and mildly heterogeneous. No
significant stranding seen surrounding the prostate or the
seminal vesicles. On series 2 image 65, there is a irregular 3.7
x 2.5 cm soft tissue nodule with central areas of decreased
attenuation suggesting necrosis seen along the proximal internal
iliac chain. 2 enlarged left obturator lymph nodes are seen on
series 2 image 66 and 68 measuring 1.3 x 1.0 and 1.2 x 1.0 cm,
respectively. An enlarged right obturator node is also seen on
series 2 image 71 measuring 1.2 x 0.9 cm. There is a small 5 mm
right lateral vesicle node on image 72. A 1.0 x 0.8 cm left
external iliac node is seen on image 72. Tiny nodes also seen in
the right external iliac chain. No pelvic free fluid. No fluid
collection. No inguinal lymphadenopathy.


IMPRESSION:
1. Positive regional nodal involvement specifically involving
at least the right internal iliac and bilateral obturator nodal
chain.
2. There are additionally nonspecific subcentimeter short axis
external iliac , periaortic and perigastric nodes.


If I am reading the results of his CT scan correctly, it appears his regional lymph nodes are cancerous... It looks like maybe only 5 of them may be compromised but not sure if the CT scans are able to scan all of the nodes or if those are just the ones the scan detected. Also not sure exactly what the other note about the nonspecific external nodes means... I think that might be good since they are small?

Any insight into these findings would be appreciated.

Much Thanks

What does your medical team have to say?

The thing to consider with radiation of prostate (and surrounding lymph nodes) is that it is just as effective as surgery for eliminating cancer, especially in high-risk cases. Tall Allen can give you all the numbers and study names, he knows them well.

For high risk cases, when the cancer has escaped the prostate, surgery is not recommended. I believe your urologist is giving you good advice. We see often on this board, men with high-risk cases who were recommended surgery, where even I, a lay person with some knowledge of PC thought this kind of advice was irresponsible. And sure enough, some months later, their PSA starts to rise. In which case men can still opt for radiation of the prostate bed (where prostate used to be), but because the prostate is missing now, the organs like bladder and colon are unprotected and they may get damaged by the radiation, and suffer more or less serious side-effects.

Something to keep in mind when discussing options with the doctors. Absolutely no reason to sugarcoat it. You and your father are in for a marathon. It does help that he is fit. Helps enormously. Hormone therapy (ADT) lowers testosteron, men lose some muscle tone, may get depressed easier, feel more tired, and the more fit you are, the less it affects you. Some doctors say "heart healthy" equals "prostate healthy"...keep us updated

Thanks Michael_T and SpecialLady for your responses, much appreciated. Michael I was wondering if you could expand on your last comment, what specific side affects and everything made the treatment not particularly fun? Also I was wondering if you still have any side affects currently affecting you or if you feel like you are back to normal or close to it?

Update: Had initial consultation with UCSF team and saw medical oncologist, was scheduled for and had a PSMA Pet/CT scan last week to see if affected lymphnodes were localized or in other areas of the lymphnode system. (Apparently this test is only available at 3 locations in the US, so very lucky to be where we are). He hasn't had a follow up consultation yet with UCSF, but met with his oncologist in his local area yesterday and the scan came back clean, so affected lymphnodes are only in the pelvic region.

There are some complications with the size of his tumor, it is very large and near his rectum so Dr. Carroll at UCSF mentioned most likely start with hormone therapy to hopefully shrink the size of the tumor, and then proceed with either surgery or radiation therapy. He has another consultation with UCSF next week to get started on treatment.

We are very grateful this hasn't spread throughout and while he is not looking forward to his treatment, we are hopeful that whichever treatment we go with will get him cancer free.

hi tinterer! welcome to the forum and i'm so sorry to hear about your dad.

our family went through similar feelings back in 2010 when my dad was first diagnosed, with a gleason 7 initially but upgraded to a gleason 8 after the pathology on the prostate after surgery.

my dad opted for surgery as there was no evidence of spread outside (though having said this, i'm currently at a stage where i'm unsure if his uro even checked this...more on that later!) the surgery didn't get rid of everything as PSA didn't go to undetectable after surgery so he then did radiation of the prostate bed as well as lupron injections. he also hugely modified his diet - became mostly vegan, stopped all alcohol and sugar. he responded well to radiation and HT and PSA went down to 0.

the good news is that 7 years later, he is still alive and feeling great! unfortunately, he did have biochemical recurrence in january 2016 and a steady climb in PSA which the uro ignored until my dad got severe back pain this year and a lesion on the spine was found. right now we are waiting for a pathology report on this lesion (which was recently removed after he showed signs of spinal compression) though all the docs are saying they think it's a bone metastisis from the PC.

anyway the last few weeks i've been going over everything and here is some advice (though i'm not a doctor! this is just waht i wished we'd done early on, if we'd had the knowledge at the time) hopefully this will be of some help to you. try not to despair too much, there are so many advances being made in PC all the time and your dad still has years ahead...it's still controllable at this stage and from things i've seen, even curable. i wish him all the best and all the best to your family too! anyway, this is what i wish we'd done, in hindsight:

-Gleason 8 is aggressive...i'm not sure if our uro really grasped the seriousness of this (my dad had a low psa with a high gleason - a combo which is often an indicator of much more aggressive disease) and i feel he treated my dad's cancer as if it was less aggressive than it was. in light of this, i wish we'd seen a medical oncologist and also got a second opinion or consultation from someone who specialises in prostate cancer/aggressive prostate cancer - they may have a better grasp than a lot of uros imo and i wish we'd known or at least been referred to one

-There is a philosophy amongst some that aggressive cancer must be treated aggresively. i'm agreeing with that. i don't think gleason 8 and above can afford medical teams to be too lax and good experts will know this. also, it seems that oftentimes using certain treatmetns concurrently (instead of one after another) has shown good results

-timing of treatments is essential in these more aggressive cases and i personally don't trust docs who want to wait too long. our uro did and was super lax about the chemical recurrence (for over a year!) and took no action - there turned out to be a met! so that's another thing i'd do - is make sure that the monitoring is close and they take it seriously

hope everything works out. i've seen tons of gleason 8 cases where there is survival for many years and a good quality of life too. i feel for you because i know those emotions and fears well - we are going through the same again with the return of the cancer (and a possibly rare and aggressive variant of it) but you all have each other and your dad will get strength from you and your concern and support. you're doing great by informing yourself! and it's great he's got a child who is fighting his corner! this is such a great place for it with so many amazing, supportive and inspiration people will keep you and your dad in my thoughts and let us know how he gets on

Hi Tinterer,
Looks like I missed your thread altogether but wanted to congratulate you and your Dad for the great response he has had to treatment. Remember he still has his prostate so it will always produce a little PSA.

<< Also FYI he had done quite a bit of research on going to a Vegan diet and the
effects that has on cancer, and switched to Vegan through the treatment. . . He is
planning on remaining on a Vegan diet as well. >>


You may find this thread on "Personal Experience with Diet and Exercise" of interest.
It is about constructing a diet using feedback from ultrasensitive PSA test results.

www.healingwell.com/community/default.aspx?f=35&m=3515667

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