New here...

[pakb]

Introducing myself...

my husband and I will probably both be posting on here with this profile- but for now mostly will be me.

My husband will be 50 in December. 17 mos ago he was diagnosed with enlarged prostate- had to catheterize every three months or so. Not sure why- but despite his father having prostate cancer (dx at age 74) the urologist never suggested a PSA. Fast forward to this past June (14 months after initial enlarged prostate dx) he was needing to catheterize 3-4x a day. He also started getting UTI infections. Finally his urologist suggested a TURP- which he had on Aug. 4th. The TURP was successful and his urine stream is now back to normal. However, we found out on the 8th, in the routine biopsy of the TURP tissue they found cancer. Few days later he had a pelvic and abdominal MRI as well as a bone scan.

They gave him a gleason score of 4+5 (9). It has metastasized into his local pelvic area- a tiny spot on lower spine and tiny in pelvic lymph. His prostate is protruding into his bladder. His urologist put him on 150mg of Bicalutamide immediately (we then learned a few days later at Foxchase Cancer this was old way of thinking and he went to 50mg.) That was the last time we saw that urologist.

We have a wonderful friend/neighbor who is a nurse and works in all of the major hospitals in the Philadelphia area and she was able to get us appts within a week at Penn, Jefferson, and Foxchase with the best docs. When we tried ourselves they were telling us mid-september. We have been to all three- all three suggested same initial protocol- he has his first shot of Lupron last week and is scheduled for his first Taxotere treatment next week- on the 13th. He also had blood tests for PSA and kidney function- kidney looks blocked from prostate pushing into bladder.

PSA came back at 677 but kidney function great. He also had a chest CAT which came back fine. All three docs have been great at listening to my nutrition ideas that I've researched (our daughter was diagnosed with crohn's 3 years ago and we already have lots of great nutrition in place- but upping the C, adding lots of D3, 3 servings of phytonutrients daily, and we went Vegan- he's had no alcohol since June because it helped his UTI symptoms)

Some things going for us... He is young so we are being aggressive and he is in great shape- was a college track athlete but is upping his workouts now and adding more weightlifting. Food is not something really important to him so we are able to make some dietary changes easily- he doesn't miss a lot of the stuff we are now staying clear of. Wondering about adding K2 to his regime.

We did send off the TURP tissue for some genomic testing. Also talked immunology for down the road. All docs have said nothing is off the table- right now hoping to calm it all down with Lupron and Taxotere.

Whew- that was a lot to write. I've already learned A TON from reading a lot of your posts here and have a background in research and stats which is helping me sort through some Thank you all for your openness in here and all of the info you share!

[pakb]

I should add another note- he has had absolutely no other symptoms- no pain etc. Just the enlarged prostate issues. For that, and for now, we are grateful. We are very positive people so are very optimistic and hopeful for all the new treatments out there.

[YostConner]

Sorry to welcome you to the site. It sounds like you are on the right course. The Lupron may affect his energy level, but the physical activity is good for that. The Lupron may also cause other side effects--most of which I'm sure you're already read about. Both of you should watch for depression or mood swings. If those happen, there is help available. All of us send you our best for treatment!

[pakb in reply to YostConner]

Thanks- will be on the lookout for those things. I did read about them but it's good to be reminded. He is feeling a little bit of the hot flashes- but nothing too bad right now. We have three teenagers in the house so we are used to mood swings I'll just have to be extra vigilant in keeping an eye on him- Thank you for your well wishes!

[Dr_WHO]

Welcome! While no one wants to be here, it is a great group.

Listed below are a couple of options that you may want to consider. They may not fit your husband's case, but it may be information that you would want to know.

You may want to talk to your husband's doctors about the results from the Stampede trial. They found amazing results with the use of two hormonal therapies, Lupron and Zytiga, vs using one then the other when the first one fails. I am on this therapy. A link to the results is listed below.

nejm.org/doi/full/10.1056/N...

In addition urologists are slowly changing their mind about surgery in advanced cases. I had G 4+4, T3N1 (spread to the lymph nodes). I argued with my surgeon to operate. The current thought is that even in advanced cases it is beneficial to remove the primary source of cancer. A reference is listed below. While it did not include mets to the bone, I am sure that future research will do so.

hopkinsmedicine.org/brady-u...

Please know that you have more people than you know praying for both you and your husband.

[pakb in reply to Dr_WHO]

Thank you! Yes- we are doing the chemo + lupron then most likely zytiga. Thoughts are that he is young and chemo should hit the cancer harder. We are fortunate that our doctors didn't take surgery out of the picture- they just want to get the cancer that is causing the prostate to protrude into the bladder to shrink- right now the prostate is really protruding into the bladder which would cause surgery complications and maybe bladder removal. The thought is that if it shrinks- the surgery would be less complicated.

Thank you for the links- we really like looking at the studies and making notes- for now and for future treatments. Thank you for the prayers

[Dayatatime]

I had the same problem with prostate tumor pushing into bladder and had to wait for the chemo to run it's course. Along with hormone therapy the chemo shrank it down to 1/3 the size and I was given the go for surgery. The next 12 months are going to be a whirlwind for both of you and he will have good days and days he feels like he was hit by a truck. Hang in there and the sun will shine again.

One thing I did during chemo treatments that I feel helped was to bring an exercise step to the infusions. I actually stepped the whole time, just lightly but enough to increase heart rate and circulation. It also aided in keeping me from getting sleepy when the benadryl entered my system. The main reason I used the step is to get blood flowing more to carry the chemo cocktail to places it may not reach. I cannot say for sure it worked but my reaction to chemo was very good. It took out the majority of the cancer before having surgery.

Stay determined and find doctors that specialize in prostate cancer that take an unconventional approach. Your first shot at this has to be your best one so make it count.

Ron

[pakb in reply to Dayatatime]

Thank you! Hadn't thought of that- but will def bring a stepper with us. Hoping to have similar results. Docs seem to be willing to use both conventional and non- and are willing to listen to things I find so I'll keep digging and searching. Thanks again!

[Dayatatime in reply to pakb]

Also the lower he gets his PSA before going in for surgery or radiation the better the outcome. A PSA of .50 or lower is ideal. The lower the PSA the weaker the cancer and typically better results. Kick it while it is down. This is where a good Oncologist that specializes in this disease can help you by giving him whatever it takes to get that number down before any localized treatment is administered.

Ron

[erjlg3]

Wow!! My tears at the start for the injustice....in my opinion.... but upon reading I see and think you're doing an amazing job!! Just be sure to take good care of YOU too because I believe your husband is going to grow old with you ♡

Most sincere,

Jackie

[Nicnatno in reply to erjlg3]

I agree with you Jackie. We aee alll going to grow old with our spouses.

Nick

[pakb in reply to erjlg3]

Yes I believe that too

[Shumaf]

My dad has a very similar experience. He had also enlarged prostate and then it s found out that it s cancer. He also had TURP to clean the prostate and bladder. The rests of his treatments you can read from my profile. He is mentally and physically in a good condition now.

I think your husband has more alternatives due to his young age, he can tolerate almost any treatment. I'm not an expert in cancer treatment but I can say that most important aspect is a loving family and high motivation to survive. I wish him and all of your family all the best.

[Sisira]

Sorry to have learned about your husband's diagnosis at a relatively young age with a high risk pathology. Though with initial jolts, you have now fallen on to the right track - proper treatment regimen to start with and in the hands of good doctors. Early Chemotherapy combined with ADT ( Chemo-hormonal ) is now the standard treatment for this type of PCa and this should be able to push the PSA down to a very low level within a short time period. But be prepared to counteract the side effects of both. You sound quite knowledgeable on these matters and your husband's overall good health and positive attitude will certainly go a long way in keeping the decease well under control. Really you have to be very smart, fast and tough with a PCa of GS 9! No mercy, hit as hard as possible.

My best wishes to your beloved husband and your good self !

Sisira

[j-o-h-n]

to pakb

And don't forget HUMOR....

Good Luck and Good Health.

j-o-h-n Friday 09/08/2017 9:41 AM EST

[Hidden]

Hi pakb,

Welcome to the club that no one wants to be in. I too had a nurse/cousin, who got me in to see the top guy at Fox Chase in Philly, and he flat out lied to me, just like my Uro did. How about that. You see, when your biopsy report says one thing, and the two doctors you are supposed to trust, say another, that's disturbing. To find it out seven years later, that's a punch in the face. So, I tell you now, and everyone here will back me up, get every scrap of paper you can, from every doctor you see. Scrutinize everything, if you don't understand something we are here to help you. Keep it in a safe place, and begin a file. It won't take long before you have a lot of paperwork. One other bit of advice, if you're from South Jersey, avoid DVU.

Joe

[Hidden]

All that catherization, no PSA test, and long delays to get TURP. This kind of wretched performance by a urologist makes me angry and I'm not even the patient. I hope your husband's healthcare gets on track with a good team. Sorry you have to be here but wishing you both the best.

[pakb in reply to Hidden]

Thank you