My PSA keeps rising

My prostate was removed 3/15. Cancer had not spread. PSA never went to 0. Radiation done for 7 weeks. PSA still slowly rising. I want it GONE!

[Dr_WHO]

Sorry for the rising PSA. What was you Gleason and what are your PSA values? have you discussed hormonal therapy with your doctor? For me I worked. I had stage 4, Gleason (4+4), T3N1Mx Ductal. Surgery last April, started hormonal last June and 38 rounds of radiation that ended earlier this month. The use of hormonal and radiation lowered my PSA To <0.1.

Good luck!

[Hidden in reply to Dr_WHO]

My Gleason was 5+4=9. After radiation, my PSA was 1.12 on 4/16. It was 1.70 on 7/16. PSA will be checked in a week. Was offered HRT, however I declined the treatment at this time. It's my understanding that ADT does not cure cancer. Just put into remission until HRT is stopped. I am an active and healthy 66 year old and didn't want the possible side effects with the therapy.

[gusgold in reply to Hidden]

A GS of 5+4 is about as bad as it gets. You say you are 66 and are active and healthy. I would avoid ADT as long as possible. With your GS of 5+4 the odds are real high you will fail ADT early which leads to CRPC which is the fatal form. A recent study showed no survival benefit of a GS 9 going on ADT

[Hidden in reply to gusgold]

Well now, that's encouraging!

[Sisira]

My prostate was removed (RP ) in March 2015. My PCa was staged T2cNoMx - Gleason 4+5=9 with positive surgical margins. PSA before surgery : 7.9ng/ml, 3 weeks after surgery and before any treatment : 0.07ng/ml, After adjuvant treatment IMRT ( radiation ) + ADT ( hormone therapy ) : remaining up to date at 0.00ng/ml.

Could you please add more information to your case too as I have done above so that the replies you would be getting will have more meaning for you and others as well?

[Hidden in reply to Sisira]

My PSA at the time of RP was 24. Biopsy results:

Right Base, Left Base, Left Mid, Left Apex, Right Central, Left Central = Benign Prostatic Tissue

Right Apex: Prostatic Adenocarcinoma Gleason 5+4=9 1.5 x 2.5 cm lesion R Apex

Involving 80% of fragmented cores. Perineural invasion present

It's my understanding from the surgeon that one side of nerves were removed. As a side note, the surgeon looked in my bladder and did find a small spot, that was removed. Subsequent bladder scans (2) have shown no further issue.

This is the best information I can come up with. If you have additional questions, I will search my documentation and try to find answers.

Dennis

[Sisira in reply to Hidden]

Dear Dennis,

Thanks for adding more information regarding your case. Now I know your PCa is Gleason 9 ( very high risk ) and initial PSA 24. Do you have any idea about your cancer staging : ( TNM System )

Tumor : T1,T2,T3 or T4 ?

N : Lymph node involvement?

M : Metastasis ( cancer cells moving out )?

Surgical Margins : Negative or Positive?

PSA rising again after RP and IMRT means cancer is still in progression. You have two issues to tackle in this situation. a ) To locate where the metastases are - in the pelvic region, bone or other places of the body? Lymph nodes and bones are the most vulnerable. Radiation may not be 100% successful if focused only to the prostate bed in case pelvic lymph nodes had micro metastases. Radiation could have been more effective if given in combination with ADT. b) To assess the size of the metastases and how fast they proliferate. Strategy of treatment should be planned accordingly.

Both these issues are not easy to tackle at the early stages because small metastases can be identified only by very advanced PET/Ct scans such as C11 Choline PET/CT Scan ( Only at Mayo Clinic ) and Gallium 68 - PSMA PET/CT Scan available in few large cancer hospitals. I have watched Dr.Kwon's mind-blowing video presentation emphasizing the use of C11 Choline Pet Scan and treating the identified small metastases ether by surgery or radiation to attain a cure. This has become the talk of the town and the strategy is called Treating "Oligo Metastatic Prostate Cancer" ( Few, less than four castrate resistant metastases and not more. Oligo means few ) . This scanning and treatment can cost a huge amount of money. But my question is can there be something really called "Oligo Metastasis" in Prostate cancer restricted only to a few metastases identified, and eradicating them to call a "cure" ? All of us who have high risk prostate cancer ( Gleason 8,9 and 10 ) are facing the threat of micrometastasis all over the body, and how come, eradicating 3 or 4 metastases identified early lead to a cure of the disease? Sooner or later, may be even after 10 years a dormant cancer cell can begin to proliferate, in high Gleason grades, aggressively and exponentially. I have my doubts, many if not for all, the advanced castrate resistant Oligo Metastatic PCa cases that Dr.Kwon has treated rather recently and claimed as cured are likely to come back at least within the next 10 years! ( This is my very personal layman opinion and I respect others to differ ). However, I appreciate his advice that one should consider curative treatments such as surgery and radiation by all means without trying to depend too much on Hormone Therapy which can extend survival only till the cancer become castrate resistant and metastatic, ending the life. Besides the Hormone Therapy though practiced quite often, has not evolved over a long period of time whereas Surgery and Radiation and other treatment methods have shown innovative and vast improvements over the recent past.

You have said that you expected your initial PSA of 24 to become zero after RP and Radiation. When did you do your RP ? When did you receive the Radiation ( period ) ? and to what level the PSA fell after this treatment protocol ? What are the PSA values you have observed in the subsequent tests you have done ( give dates ) including the present level? The following PSA facts will be useful to you. This blood marker is our compass without which we can't navigate.

- Undetectable PSA level : 0.2ng/ml or less ( cancer free / cure or remission level. Some doctors take it up to 0.4ng/ml but both should be stable )

- Bio chemical failure/cancer recurrence level : Above 0.2ng/ml and progressively increasing.

- After 1.0ng/ml, for further increases, you should learn to calculate the "PSA Doubling Time" ( Eg.How long it takes 2 to become 4 ). Shorter the period, more aggressive will be the cancer. If the figure doubles within 3 months, cancer is spreading very fast and if it takes 1 or 2 years, the remaining cancer cells are growing very slowly and its control would be much easier.

This text can be too much for your reading at a stretch, so when you send me the other information I have requested above, I will touch on the future treatment side that you may discuss with your Uro or Med Onco or both.

Why didn't you tell us where you live at present ? ( Sisira is from Sri Lanka, a small Asian country )

When were you diagnosed for PCa and your age then? ( Sisira in March 2015 at 68 years )

Wherever you live you are with us now, and should be motivated to fight this battle together with all of us.

Every dark cloud has a silver lining. So let us enjoy life!

Sisira

[Hidden in reply to Sisira]

Hello Sisira,

Unfortunately, I don't know the cancer staging or the tumor (T1, etc).

At the time of RP (March 2015) there was no lymph note involvement or any Metastasis. Surgical margins were positive. PSA never went to 0 after RP. On 4/16 it was 1.12, and on 7/16 it was 1.70. I had a blood draw this week and will know my current PSA on Monday.

I must say, after reading the several replies and comments, I feel very upset, concerned and disturbed. I know ignorance is bliss. I am apparently in a blissful state at this time. I was 64 at the time of RP. I had dealt for years with an enlarged prostate. My PSA was high, however having a large prostate will cause a higher PSA level. I had no worries until a new urologist was more proactive and sent me for testing.

I am a very healthy, active guy that feels NO affects of cancer (other than ED). I struggle with undergoing ADT because of the side effects. I am in a watchful waiting state right now with my urologist. I suspect he will request a PET scan in the very near future (understanding that a tumor needs to be a certain size before it's detectable). My struggle is whether to undergo treatments that will take away my excellent quality of life....or die earlier. Maybe a stupid, selfish dilemma I've put myself in.

I am taking numerous supplements in hopes it will either kill the remaining cancer, or at least keep it from metastasizing. Hope springs eternal.

[Sisira in reply to Hidden]

Thanks. Very much better!

Still there is a grey area in your reply. You underwent RP in March 2015. The PSA reading you have given since RP - 1.12 was done only in April 2016. ( After 1 year ). Din't you do any PSA tests during 2015? You only say "PSA never went to 0 after RP". You are expected to do PSA testing every 3 months after treatment. Have you not done so?

Please clarify.

In any case there is nothing to panic. Be cool.

Awaiting your reply,

Cheers

Sisira

[Sisira in reply to Sisira]

Hello Brother,

Sorry for disturbing. You have also not given the period of your Radiation treatment ( With the start and end dates ).

Sisira

[Sisira]

Hi all,

These are my views just for you to ponder.

Gleason 9 alone is a very high risk pathological factor even if the disease is organ contained at the time of diagnosis. Your PCa is lethal and most aggressive and you have to make the right decisions regarding the treatment strategy, taking the earliest opportunity available to you. You may breathe more easily with Gleason 6 and 7. Definitely one has to go into a hard battle with a strong will power to combat the enemy under such dire circumstances. I would like to quote a phraseology used by one of our brothers in this community - "If you are scared to die you can't live". So do not be too concerned about "side effects". Naturally, aggressive cancers need aggressive treatments and they are invariably associated with significant side effects but mostly they can be tolerated with proper understanding and preparedness. Therefore don't reject the right and the most appropriate treatment because you want to avoid side effects and enjoy the bliss of ignorance.

It is important to understand the difference between curative and palliative treatments. Localized ( focal ) and systemic ( whole body ) treatments. Prostatectomy ( RP ) and Radiation ( IMRT )are gold standard curative treatments but localized. Chemotherapy too is curative and also systemic. ADT is mainly palliative ( suppress the growth of cancer and symptoms ) and also systemic. Even during ADT some cancer cells will undergo apoptosis ( cell death ). All these treatments can have severe side effects on some individuals and some may not feel the severity. Certainly the quality of life can be affected. Some individuals even with high gleason scores ( 8,9 and 10 ) respond to ADT ( mono, 2 or 3 ) for long periods before they become CRPC and for some it could be relatively short. Why I am telling you all this is, not to regret later for not having chosen curative treatments with the early opportunities available to you for fear of side effects.

Deviating from the conventional approach, today even chemotherapy ( Eg. Docetaxel ) is given upfront along with ADT when the cancer burden is low rather than having to wait until the disease become CRPC or mCRPC to gain very good survival benefits. Obviously one has to tolerate the side effects and it will be much easier when you are stronger physically and mentally. Some Urologists now recommend prostatectomy even when the cancer has spread outside the capsule and metastatized because debulking can result in survival benefits.

So brothers, do research as much as possible for your learning, be brave to make bold decisions and hit the enemy as hard as possible at the earliest instance without allowing it to take your life that easily.

From my above post with the cancer staging you will see that I can be very optimistic with my initial treatment and the prognosis. Yet I am getting ready for a "missile attack" when I finish my 2 year ADT and the moment I see my first bio-chemical failure ( cancer recurrence ). What I mean is I am going to use Docetaxel ( killer ) right away not caring for the side effects, although I can buy time with the palliative treatments. Yes, Do or Die! is my attitude. ( Of course there are other treatments to suppress cancer progression even when chemo fails ). As the battle continues, there will be more new drugs and treatment strategies to manage the disease. Although advanced prostate cancer cannot be cured, it is treatable.

The more brave warriors we have in our community battle field, the more easier will be the task to uplift the hopes of all who join newly with their shock and grief experienced at their diagnosis of this deadly disease.

May you all be strengthened with your own conviction and then with my best wishes for Good Health and Happiness all the way!

Love to all,

Sisira

[Hidden in reply to Sisira]

Well said. Thanks for the encouragement. This disease is particularly difficult in that it puts a great burden on the patient to educate himself and make the best treatment decisions he can. I wish you well on your journey.

[Sisira in reply to Hidden]

Thanks Peddie.

Sisira

[TheWizardofWesley]

Look into Dr.Kwon at the Mayo Clinic. ..He seems to have some "Cures" fot advanced bio chemical failure PCa. He is going to be my next stop

[Hidden in reply to TheWizardofWesley]

Snussy - everybody wants it gone.

Kwon has some nice equipment. If he thinks a C11 scan is appropriate, it would tell you where the cancer is, and possibly guide treatment decisions.

[bb66hotflash]

Gone is everyone's wish. I was DXd in Aug2012, Gleason 5+4 (9). PSA went from 2 to 17.4 in 15 months, when Dxd. Had already metastasized to pelvis, L1, L2, L3, Staged as T2aNoM1. Surgery not even a remote option. Went on Hormone Therapy- Lupron shots and Bicalutimide for 9 months. Then went on Galeterone trial for 31 days, then experienced strong Uticaria (Hives over entire body). Then Enzalutimide (Xtandi) for 19 months (PSA went down to 0.07). PSA started to rise and continued Lupron and Enzalutimide for another 13 months, until had to stop due to extreme fatigue and exhaustion. Had bone biopsy and Genome analysis perfromed by Foundation One. Showed PIKCA and PTEN and ATK genome defects. Just completed Provenge, today. Planning on starting a Phase 1 trial with AZD8186 in two weeks. Still getting Lupron and also Denosumab, too. I have been alive for 4+ years and hoping to continue. Bone metastases are increasing/spreading - T2, ribs. PSA doubling time is now 6 weeks.

Unfortunately, if you had a prostratectomy, radiation and still have rising PSA, either some prostrate was missed or it has metastasized elsewhere, and may not be visible on standard CT or bone scans. Remember, CT or bone scans need a tumor to be at approx. 0.7 to 1 cm in size to be seen. Some of the new PET scans can detect smaller metastases.

Wish you the best! The good news is aggressive PCA is typically slow going compared to other types of cancer and you do not need to panic. It took me a long time to achieve some level of acceptance. You have time, but no one knows how much, PCA is generally slow. Get the best care you can afford. And make the most of your life