Diagnosed with prostate cancer and worried!!!

Hey John,

Intravenous tubes or IV tubes are a way to deliver fluid to keep you hydrated and your electrlytes in balance and also to deliver medication. It's astraightforward process. They stick a needle into one of your veins in the back of your hand. A thin tube is attached to the needle that can deliver the fluids or medication. 

No, you do not have to do the genomic testing. I did it because it was part of the hospital protocol following the results of the PSA and digital rectal exam. My PSA was 5.9 and the DRE indicated no abnormalities. My urologist then proceeded to do the biopsy following the 4K Score results. We could have done the biopsy without it but it added some additional information to proceed with the biopsy.

OK, let me know what you decide to do.

All the best,

Himads

Hi John,

Now almost 73, I have been dealing with my PC since October 2014, PSA 12+ Gleason 8, aggressive, Urologist said I need op within 3 months or it would spread. My second Biopsy was MRI /ultrasound, the TRUSS missed it in February, I was sent for, CT & Bone scans to make sure it was contained in the prostate before they would operate. with my wife's support I chose quality of life. I went on to various alternate treatments, supplements, PH in alkaline & a good cancer fighting diet. Obviously something worked.

What I have learnt in the last 3.6 years, from reading, research & listening, was no matter what the treatment, be it the Robot, Radical Prostatectomy, External Beam Radiotherapy, Brachytherapy, Chemotherapy, Hormone Therapy (ADT) or Alternate Treatments, " One size does not fit all", they all have their issues, side effects, after effects & in some cases the cancer comes back some times years later & sometimes in a different location. 

While a Radiotherapy Oncologist does discuss radioligy treatment with you, an Oncologist usually is not going to be interested in your cancer till it is at a stage where it needs management not treatment. 

John I really think you need to get a second opinion with a PSA of 5.7 & Gleason of 3 + 3 = 6  I would do some serious research & contact your local Prostate Cancer Support Group for more information & PC patient experiences.

My mate Graham, when in early 60's, was diagnosed 2 months before me in 2014, same Urologist as myself. Graham's PSA was 4.8 & his Gleason 6 he was recommended Active Surveillance/Watchful waiting. He also changed his diet, 3 & half years on, in February, Graham's PSA was still only 5.3. He is going along fine, no  real symptoms except pees a lot.

For me after 3 years having 12 weekly full Blood tests & annual MRI's & Scans & despite no symptoms what so ever except the PSA fluctuating between 20 & 70 ug/L  my PSA started to double & went to 720. I was sent to an Oncologist, who immediately sent me for an MRI, CT Scan, Ultrasound, Full Nuclear Bone Scan. results was no trace of the tumour in my prostate could be found but it had metastasised to 8 places on my spine, a hip, a rib, my sternum & 2 places on 1 lung & 3 on the other.  

Put me straight on to Hormone Therapy, 1 x 50mg Bicalutamide tablet a day & 3 monthly Lucrin injection. in 1 week PSA was 1.67 & in 4 weeks PSA was down to .53.

 I take Venlafaxine to help with "hot flashes" & a monthly injection for strenghtening of bones, I have no other side effects (I feel very lucky for that). I have no pain until a week or so out from Lucrin injection, when PSA goes up & I suffer servere but managable pain.

John, only you can decide what you do to &/or you put in your body. There is no need to worry, there is a lot of support out there, don't rush into anything with a Gleason of 6 & PSA of 5.7. I would be doing a lot of research, reading & listening. There are lot of things you can do to help yourself for now. It is a bit of try it & see what it does for you

Also there is another free website that has  some interesting info, PC patient experiences & links. It is for Prostate Cancer patients, family & carers only & called "Inspire". it's worth the time to have a look. 

You can also go back through posts & replys here by clicking on the image on left side of post & then clicking "activity"

If you need any more help or just need to talk, no problems, anytime. It was on "Cancer Compass" that I received the help, support & direction from members that I needed, especially when I first heard those words "You have cancer" 

No, I don't believe an MRI is not going to tell you any more at this stage.

Good luck & take care. Cheers  Charlie ( I am in Australia)  

I thank everybody who provided their helpful and wonderful input regarding my PC. And would like to let you know my final decision.

I consulted a few urologists and radiation therapists and they all agreed that I have three options:

1-Surgery

2-Radiation therapy

3-Active surveillance

If I choose radiation therapy and the cancer recurred, I will have just one choice left: hormone therapy

But if I choose surgery, I will have more than one choice available for me.

As for active surveillance, I have eliminated it at this time because I think it is a risk. I’m not sure if the cancer will stay Gleason 6 all the time or it will jump to G7, 8, or 9. No specialist could guarantee that my Gleason 6 cancer will stay Gleason 6.

So for the above reasons I will most probably choose Radical Prostatectomy.

Please let me know what you think about it?

Hi John,

Good to hear from you and you seemed to have done your homework. And yes, that was exactly my line of thinking with respect to the three traditional options. Post-surgery, I would have had several options with respect to additional treatment.

For what it's worth, my biopsy results and yours are quite similar. I elected to do the robot-assisted radical prostatectomy. Post surgery, the path report came back with a Gleason of 7 but with clear margins (it was a 6 following the biopsy). I believe had I waited too long to do anything, there was the possibility that the cancer would have spread beyond the prostate. 

I am now 40 days post surgery. The incontinence issue has been minimal for me and getting better with each passing week. I think I will be "diaper free" in the near future. I haven't dealt with the ED issue yet. 

The incisions are healing well and they are quite small. All in all, this has not been too bad. 

By the way, one suggestion. If you elect to have surgery, have the physician put on your medication order sheet some medication for nausea and for bladder spasms. That way, it it happens to you, the nurses will be able to administer them post surgery without having to track down the physician to order them. I did not have any problems with nausea but did have a reaction to the small water-filled balloon that was inside the bladder to hold the urinary catheter in place. It just felt like I needed to pee really badly even though the catheter was working fine. I believe it was the balloon impinging against the bladder that made it feel as though I needed to pee. I was unable to sleep at all that first night post surgery because of this. Once I was able to get some ditropan (for bladder spasms), the sensation went away and I slept well the second night.

Anyway John, good luck to you and keep us informed about what you decide to do.

All the best,

Himads

Sorry to hear about your diagnosis. I, too, live in Miami and I see a highly reputable Urolgist at UM Sylvester. I have been battling this for 5 years now (51 y.o. when diagnosed). My Gleason was/is 9 and my tumor was T4. Too big and advanced to remove. So I've been on Lupron (every 3 months) since early 2014. I have done two rounds of radiation. Now just completed #4 of 6 rounds of chemo (Docetaxel). The chemo makes me feel worse than the cancer, but it's a necessary evil. I am a fighter and try not to get too down about it. Attitude, as my doctors say, is as important as the treatments. I wish you the very best with your treatments and I would recommend my doctor for a second opinion. I might also consider trying your doctor at Mt. Sinai for a 2nd of my own. I am looking for a local support group to help cope with, and get some ideas, for the obvious side effects this disease causes. Any ideas?

Hi all,

Here is my update:

After researching for around 5 months, I decided to go with surgery. The surgery was done on September 5, my major problem now is nausea and acidity which is causing a lot of gas in my stomach. I’m throwing up everything I eat. Doctors gave me medications for this problem, but so far nothing helped. I don’t know how long this will last. Is this normal? Your advice is greatly appreciated.

Hi John,

Thanks for the update and congratulations on completing your surgery. I did not have any nausea but I understand this is one of the common side effects. I hope that has subsided. I hope your catheter is out by now and you are continuing to recover. Have you got the results from your pathology report yet? 

I am scheduled to review my first PSA results post surgery (I had surgery done on May 7) tomorrow. I have already seen the results and the PSA is in the "undetectable" range. So far, so good. The incontinence has pretty much resolved. Can't say the same for the ED issue, but it's early yet.

Anyway, John, keep us up to date on your condition if you would like. I hope everything continues to ge well for you.

Regards,

Himads

Sorry to hear.  When I was diagnosed I was also worried and confused. The treatments are sometimes harsh and many doctors don't have up to date knowledge. I would suggest getting a second opinion about the primary treatment. The old rectal needle biopsies can be very inaccurate. There are special MRI's called a Multi Parametric MRI that is essential to determining the exact location of the cancer.  It is needed to make sure the Dr. is correct with his assessment of right lobe confined.  Bone scan is always a good idea.  After that, you can surely use other resources to determing the best treatment. Use the Prostate Cancer Research Institute's web site to review options.  You have time with a gleason 6 and PSA 5.76 but you did not mention your age which is a key factor.  I would move along quickly and decisively.  All the best.

Dear All,

Sorry, I have been unable to post as my situation was so bad. I stayed 6 day in hospital after surgery unable to eat anything because of nausea and vomiting. I was just living on IV feeding. Day 7, I could eat a little bit without having nausea and throwing up my stomach contents. I was sent home on day 8 and yesterday my catheter was removed.

My problem is now total incontinence. That is 100% incontinence. It looks that my bladder got used to the catheter mechanism and is refusing to keep urine. Is this normal? What can I do to eliminate of at least reduce this complete incontinence?

Your valuable advice is greatly appreciated.

Dear forum members,

I thank everybody who tried to help me or comfort me and would like to post my update.

My incontinence started to improve yesterday and it is now around 50%. I’m still taking pain killer medications like Oxycodone and Tylenol because I still feel pain. I hope to improve daily over the next few weeks and wish good luck to everybody.

John