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Axumin PET scan-What's Next?

Cy79Fan's picture
Cy79Fan
Posts: 4
Joined: Aug 2018

I have been a long-time observer of this forum and decided it is time to become a participant.

I was diagnosed with prostate cancer in 2008 at age 51 with a PSA of 6.2. After biopsy, my diagnosis was T1cNoMo, Gleason 7 (4+3). RRP quickly followed. Pathology kept Gleason at 7 (4+3) but stated that some areas were 10. There was also a change to T2cNoMo. Seminal vesicles and lymph nodes were negative. PSA went to 0.

PSA of .1 appeared in 2010 and rose to .3 in 2011. My urologist recommended radiation, which was accomplished in the fall of 2011. Preparatory to the radiation, pelvic MRI and a bone scan revealed nothing. PSA immediately went to 0 and stayed there for 3 years.

I have had a few bursts of bladder bleeding, a result of damage from radiation. My urologist has checked the bladder via cystoscopy and a CT scan last winter with no findings.

PSA rose slowly but in the last 18 months has risen from .9 to 2.9 at an accelerating pace. At my July appointment, my urologist recommended an Axumin PET scan, which is scheduled for this week. My wife and I have a consultation with the urologist at the end of August.

The hope is that the Axumin PET scan will reveal a localized source of my PSA/prostate cancer. My question for this community is: if a localized source is found, what localized options might be available, given my treatment history? My wife and I deal best when we have information we can research and study. My research in the past few weeks hasn’t revealed much that’s different from systemic approaches, such as hormone therapy.

Any thoughts are appreciated and will help my wife and I prepare for our appointment on August 31. Much thanks!!!

VascodaGama's picture
VascodaGama
Posts: 2939
Joined: Nov 2010

C,

Thanks for sharing your story. I believe that you are well acknowledged on PCa affairs for your experiences as a survivor and for the cross-discussions you have read in this site. You refer your case as a systemic disease but it might not be the case yet. The PSA rise to 2.9 ng/ml regards recurrence and now you need to find where such is occurring to access the possibility in eradicating the bandit again with spot radiation bombardments. This is called oligometastatic treatment and it could lead you to cure.

To such intent identifying the location of the cancer (the best we can afford) is essential for not missing the targets. PET is reliable but Axumin may not fully provide you with proper definite targets as it confuses PCa with other cancers. The radiologists reading the films will judge detection based on past experiences where typically PCa was found. The best tracer specific to prostatic cells available today is the 68Ga PSMA isotope identifying PCa in soft tissue and bone. Though this exam has been available for 5 years already, this is still considered as clinical trial in the USA. One needs to go private and do the test ($2,000 own paid) at one of the clinics involved in the trials. In Europe this exam is in full swing in some countries. Another tracer reliable in detecting PCa is the F18 Flurocholine. This tracer has proven to be more specific in PCa than the Fluciclovine F18 (Axumin) but it requires higher levels in PSA above 1.8 ng/ml (your case).

Surely you will lose nothing in doing the Axumin, but in your shoes I would procure the PSMA PET scan too. You can inquire on the matter in your next meeting (Aug 31). The 68GaPSMA PET requires a doctor's referral so that you can ask your doctor if he would give you the referral or guide you in getting one.

The radiation you did in the fall of 2011 (6 years ago) may limit the field for added RT (cells got limits in RT absorption) of this time. It is important you get image exams of those areas that are typically affected. For instance, a colonoscopy (for colon walls) and cystoscopy (for bladder walls), MRI (for kidneys). The traditional bone scan is very limited in detecting small size lesions so that the PET would provide you with information on the bone status.

I have a similar story to yours. Failed RP in 2000 (50 years old) and failed RT in 2006. In 2010 I started ADT (hormonal) but I am hopeful for an oligometastatic treatment. Last January 2018 a PET F18 choline covered by out National Health Service free of charge (PSA=1.8) managed to identify PCa at the prostate bed (same area of 2006 RT) and one affected inguinal lymph node. My radiologist of 2006 informed me that the tissues of the area of 2006 can receive more RT if fully recuperated. They say that 10 years is enough to assure due recuperation but he also wants to verify the surrounded areas before signing any agreement.
For the moment, a colonoscopy has identified radiation proctitis which may prohibit added RT. I do not have yet a final answer but in October I will meet the doctor in command of my case (NHS Uro-oncologist) with whom I will discuss my next step. It will be decided then if I can avail the oligo-therapy or if I am fully systemic. ADT of 2010 has proven to be reliable in my case. I believe that it will continue to be for many years to come. You too will have many years ahead of enjoyment which ever approach you will choose.

Please share the results of your meeting. We will try helping you understanding the facts.

Best wishes and luck in your journey.

VGama

Old Salt
Posts: 720
Joined: Aug 2014

might be of interest. It seems to me that there are some similarities. 

https://csn.cancer.org/node/317007

Cy79Fan's picture
Cy79Fan
Posts: 4
Joined: Aug 2018

My Axumin PET scan was accomplished on August 30 and we had a consultation with my urologist on August 31. Quick turnaround by the lab; the Dr had the lab report for our consultation. I have a dime-size (1.2 x 1.0 cm) soft tissue nodule on my anterior right pelvis and a quarter-size (2.5 x 1.5 cm) enlarged right external iliac lymph node. Both are considered to be consistent with metastasis. Everywhere else: clean. Urologist felt that the two oligometasis were consistent with my last PSA (2.9).

Urologist referred me to a radiation oncologist for assessment and discussion for the possibility of using Cyberknife (SBRT). We also began discussion on hormone therapy (lupron) which might be done in conjunction with SBRT or if SBRT is not an option, procceed directly to hormone therapy. While urologist was pleased that Axumin indicated only oligometasis, he was not so naive to believe that microscopic bandits could be... wherever. The oncologist appointment is next Monday, Sep 10.

My wife and I appreciate any thought/observations. One question: does anyone have experience with insurance coverage for SBRT? I am not on Medicare (age 61). I am a retired Fed on BC/BS. BC/BS would not cover the Axumin PET scan; "not medically necessary".

Cy79Fan's picture
Cy79Fan
Posts: 4
Joined: Aug 2018
Five months after completing Cyber Knife radiation in October 2018, my wife and I had an appointment March 22 with my radiation oncologist, including PSA blood work.  
 
To give context before results (so you don't have to read through posts from last summer): last July, when my urologist decided it was time to take action, my PSA was 2.9. The first two weeks of October, I had Cyber Knife radiation on the two localized metastases discovered by the August 30, 2018 Axumin PET scan. In December, I had an appointment with my urologist and my PSA had significantly declined post-radiation from 2.9 to 0.2.
 
Now, my PSA is <0.1! The oncologist is delighted and very optimistic. He believes Cyber Knife destroyed the two metastases. I will see him again in a year and he hopes that a one year interval is what we can continue indefinitely. Concurrently, I'll be seeing my urologist at least twice/year and having PSA dialog with him. Reality tells me I'm likely not 100% cured and that continued long-term vigilance is part of our lives. We are blessed with an outstanding medical team!
 
Related to this, last August, we had to pay for the Axumin scan out-of-pocket ($4,900). The provider obtained an Advance Benefit Determination from BCBS; BCBS would not cover. Subsequent conversations with a BCBS customer service representative informed me that to gain appeal rights, the provider needed to file a claim. If the claim was denied, I would then have appeal rights. I decided in January to pursue this approach. My thinking was that if the claim and appeal were both denied, I would at least be contributing to case history through my positive results initiated by the Axumin PET scan. The provider submitted the claim in early February. We were pleasantly surprised that BCBS approved the claim, provider has been paid, and we'll receive a refund!

 

eonore
Posts: 27
Joined: Jun 2017

That is terrific news! You and your doctors have done a terrific job controlling this disease.

Eric 

VascodaGama's picture
VascodaGama
Posts: 2939
Joined: Nov 2010

Great news and report. Thanks for sharing it. I hope you get zero PSA in the following tests.

I would appreciate if you share more details about the treatment protocol in regards to the total radiation dose (grays) and number of fractions, and the period under the hormonal treatment (dose of shot).

Congratulations again.

VG

Georges Calvez
Posts: 205
Joined: Sep 2018

That is fandabbydosey, you certainly have it well under control.

hewhositsoncushions
Posts: 256
Joined: Mar 2017

Good news!

Josephg
Posts: 146
Joined: Jan 2013

Celebrate for sure, as you have earned it.  All too often we don't have enough good news to celebrate wholeheartedly.

You do, so take full advantage of it.

I wish you continued success on your journey.

Cy79Fan's picture
Cy79Fan
Posts: 4
Joined: Aug 2018

I deeply appreciate the congratulations and well wishes of the community! My wife and I have trips to Florida, California, and Aruba planned this year. We are seeking to live life intentionally and fully, doing the things that feed our spirit. Next PSA is July.

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