I'm new here, but been reading for a while! Really need help from all the knowledgeable people here!

[sjc2]

My husband was dx with aggressive PC July 2014 at age 57 by 12 core prostate biopsies - 6 on left negative, 6 on right side all with high Gleason scores 3+4, 4+3, 4+3, 4+4, 4+5, 4+4. PSA was only 3.2 but had risen from 2.5 in only 3.5 months so PC was suspected. Due to high GS decided on RP using Robotic da Vinci system done Aug. 2014. Surgical pathology showed PC with perineural invasion on right, clear margins, pT2c, pN0 (10 lymph nodes examined with zero involved), Total GS 7, Diagnosis: Invasive prostatic adenocarcinoma. We were told the prostate was removed intact with the right nerve bundle needing to be removed also.

PSA stayed at <0.1 until Sept. 2015 when it rose to 0.11, then in 6 weeks 0.2 and 2nd PSA @ 0.2 which meant he had a BCR. RO wanted to do 6 months ADT with 39 IMRT treatments starting Nov. 2015, with hopes of a cure. We wanted to throw everything at it, so agreed. First PSA after IMRT finished, but still had ADT in his system was 0.023 in Apr. 2016, PSA Aug. 2016 <0.015 with all IMRT & ADT done. PSA Dec. 2016 <0.015. Looking good so far until 3/20/17 PSA 0.064, then the jumps really started:

6/26/17 PSA 0.121, 9/11/17 PSA 0.176, 11/13/17 PSA 0.4, 2/12/18 PSA 0.838, 5/7/18 PSA 1.190 - as you can see, he had some rapid doubling time starting June 2017! MO knew it was back and was doing all the standard CT's and Bone Scan - all showing nothing. We wanted to have Axumin Scan but MO said to wait until PSA got to at least 2.0 for best chances of showing something, since we would have to pay out of pocket/not covered by our insurance. Next PSA on 8/6/18 was 3.08 so MO ordered Axumin for 8/29/18 - results showed a small right pelvic lymph node just a few millimeters in diameter (2.5 SUV). The other thing that showed up and what CONCERNS me is "3 foci of abnormal uptake in the right lung. 2 located along inferior margin of right hilum, measuring 6.06 and 5.6 SUV respectively. Third abnormality right lower lobe measures 3.77 SUV. These are suspicious for metastatic lesions." MO said the small lymph node was the reason for rising PSA and said she strongly felt the "lung" issues were "unrelated" & wanted him to see a Pulmonologist. We did & of course lung Dr was NOT familiar with Axumin scans, so he spoke to Dr that did Axumin report. Was decided to do Bronchoscopy to biopsy around that lung. Did 8 biopsies, a brushing & a washing of that lung for cells. Dr explained that without a lung CT to guide him (can't use Axumin for exact locations) he couldn't be sure he was it the exact area, that's reason for brushing & washing to get as many cells as possible in other areas. The 2 areas of the hilum he said could not be reached without cracking his chest, which he didn't want to do yet. Everything came back normal?? Dr wanted to follow-up with a Super D Lung CT in 3 months, done 1/4/19. That came back normal, so now Dr wants to just do a chest x-ray in 1 year. MO still says she doesn't thing it's related to his PC?? By the way, he has never smoked.

My CONCERN is, why is MO so adamant "it's not related"?? When asked, she just keeps saying she doesn't think it's related and that's why she sent him to a specialist! We feel she's a great MO with a group that specializes in PC and treatments, but she's not easy to talk to. There's not another group anywhere near us that specializes in PC, that would be better for his treatment. MO put him on ADT just 1 week after Axumin and said he would need to be on them permanently now. After ADT shots with RT in 2015-2016 and ADT shots now (very painful and expensive) he decided to have an Orchiectomy (since as he says, it's all been gone for years down there). We don't like the idea of pumping chemicals into his already weakened body & it's just easier for him to not have to schedule his life around appts. for shots & hope insurance will cover them as they change over time. His urologist said that his patients seem to have less hot flashes with surgery and in his opinion the cardiac risks are less than with the ADT meds. Since his surgery on 9/11/18 he has had hardly no hot flashes, which he was having a very hard time with while getting the shots, so that's great! MO had Genetic test done and he does have the BRCA2 mutation, so not surprised he was dx with PC and that his PC was aggressive! Haven't seen MO since we got the genetics results last week.

So sorry for the LONG post, but from all I've read, you need as much info as possible, to give good advice! SOOO my questions are: 1) Would you just wait for a lung x-ray in a year? I'm just confused why the MO doesn't think those 3 areas that "lite up" on a scan that's supposed to show PC, wouldn't be any thing but cancer?

2) Knowing his history with the aggressive PC dx and BCR now twice in such a short time (13 months & 16 months), with rapid doubling times and the Axumin showing a lymph node for sure, what do you think the average time from ADT shots & then his Orchiectomy before he becomes castrate resistant?

3) Would you just wait until CRPC (PSA will be done every 3 months, normal CT's & Bone scan every 6+ months, per MO) or is there something else we should be doing. 1st ADT 1 month shot 9/4/18, 10/1/18 PSA 0.10 & T <10, 2nd ADT 3 month shot on 10/9/18, 11/19/18 PSA 0.01 & T 12. Surgery done on 1/11/19. If PSA gets to 2.0 MO will do Axumin again. MO is adding Prolia at next visit 1st of April.

[Tall_Allen]

Your MO is saying that it's not related because benign lung lesions are a known source of false positives on the Axumin scan. It has to be investigated, but it is probably nothing.

"MO had Genetic test done and he does have the BRCA2 mutation" I assume this was germline. You might consider one of the clinical trials of a PARP inhibitor:

pcnrv.blogspot.com/2018/02/...

[sjc2 in reply to Tall_Allen]

Thank you so very much for the quick reply (I was hoping YOU would be on of those to reply!). So by "it has to be investigated", do you mean further than it has been already been done by the lung Dr.? Or do you think what he's already done is enough until the 1 year follow-up chest x-ray Dr. has ordered?

Sorry but I'm still new at all these PC terms, what do you mean by germline? It was a Gene analysis blood test that was supposed to test more than 30 genes, done by Ambry Genetics (we haven't received the actual test results paperwork, just a call from the Genetic Counselor with the verbal results). I will look at the link you posted, but what is a PARP inhibitor?

[sjc2 in reply to sjc2]

Tall Allen - oh my, I just looked at your post, it lists 21 different PARP Inhibitor clinical trials--how would we know which one is best for him?? We don't have any medical background and this is all so new and confusing to us.

[Tall_Allen in reply to sjc2]

Are you saying the lung doctor ruled out a pulmonary metastasis? How did he determine that?

"Germline" means that it is an inherited abnormality, not just "somatic" which means in the tumor. PARP inhibitors means that the medicine inhibits an enzyme that is needed to repair DNA damage of the cancer. A functioning BRCA2 gene destroys bad DNA. A dysfunctioning/mutated BRCA2 gene allows bad DNA to accumulate. So a PARP inhibitor may make up for the dysfunctioning BRCA2 gene.

[sjc2 in reply to Tall_Allen]

"Did lung doctor rule out a pulmonary metastasis"...that's what I'm wondering, this is what he has done, from my post "lung Dr was NOT familiar with Axumin scans, so he spoke to Dr that did Axumin report. Was decided to do Bronchoscopy to biopsy around that lung. Did 8 biopsies, a brushing & a washing of that lung for cells. Dr explained that without a lung CT to guide him (can't use Axumin for exact locations) he couldn't be sure he was it the exact area, that's his reason for brushing & washing to get as many cells as possible in other areas. The 2 areas of the hilum he said could not be reached without cracking his chest, which he didn't want to do yet. Everything came back normal?? Dr wanted to follow-up with a Super D Lung CT in 3 months, done 1/4/19. That came back normal, so now Dr wants to just do a chest x-ray in 1 year."

What else do you think we should do or would you do what the lung Dr wants to do and wait a year to do a follow-up chest x-ray (not a chest CT)? I'm concerned and confused, but the MO and lung Dr seem to think it's fine!?

[Tall_Allen in reply to sjc2]

So he got lung tissue which a pathologist examined, correct? I know nothing about that process, but that sounds good to me - why doesn't it sound good to you? What can he tell you that would make you less concerned and confused?

[sjc2 in reply to Tall_Allen]

The reason I'm concerned is because he told me that without a lung CT to guide him (can't use Axumin for exact locations) he couldn't be sure he was it the exact area, that's his reason for brushing & washing to get as many cells as possible in other areas, but he said that still doesn't tell him for sure AND the 2 other areas of the hilum he didn't do anything about (not biopsies) because he said could not be reached those areas without cracking his chest, which he didn't want to do yet. He wanted to follow-up in 3 months, because he said "we don't want to just assume it's okay". The follow-up was a Super D Lung CT (this was done in case anything showed up that he was concerned about, he could then get biopsies that would be guided by this special CT & be sure he was in the exact spot) in 3 months, it was done 1/4/19. Report came back saying "There are several scattered subcentimeter pulmonary nodules primarily in right lung. These have stable appearance. On most recent prior exam the 8 mm nodule noted slightly grown and on this current exam this has resolved is therefore benign etiology. No new mass or nodule is seen. There is some mild atelectasis in right middle lobe and in lingula." Dr wants to just do a chest x-ray in 1 year. This CT and the Axumin were done at two different hospitals and were NOT compared, I think they should have been compared! I know I'm maybe just worrying too much, but he is the love of my life!!

[Hidden]

The Lupron is working so stay with what works. You might go years without seeing it back over 2.0, let’s hope! Do your best to now focus on enjoying your life.

[sjc2 in reply to Hidden]

Thank you... that's what we hoped we could do, just live life and relax a little, praying it will be years before his PSA goes back up! But then we start worrying if ignoring the spots in his lung for another year, until they do a chest x-ray (never had just a x-ray, it's always been chest CT's) is the smart thing to do!!

[Hidden in reply to sjc2]

I had a similar spot show up a few years ago on my lung from one of my scans. The Oncologist were not overly concerned, they asked my GO to X-ray it as part of my annual physical. Since then it has disappeared from my chest X-ray. My Oncologist also mentioned it would have been rare for it to spread to lungs before bones, mine is currently in my lymph nodes. Have hope, be strong, and keep asking your questions for guidance. But keep in mind we are just letting you know our experiences and the oncologist are the experts to trust.

[sjc2 in reply to Hidden]

Thanks for sharing your experience, it does make me feel better! I know everyone is different and what was the case for one person may be totally different for someone else, but hearing what others have gone through is very helpful to me... we are all in this battle together! I pray all goes well with you!!

[sjc2]

Thank you so much for the info! You and Tall Allen are the posts I've read the most of and really respect your knowledge! Sorry, I'm not sure I understand, are you saying that there's a simple blood test called Chromogranin A that would tell us if the lung lesions are a type of PC called NEPca (Neuroendrocrine Pca)?

[MichaelDD]

March 2016 I was diagnosed PSA 12, Gleason 8. DaVinci removal June 2016. Did first PSA after surgery was .024

Next PSA Oct 2016 was .042. Mid October to End December 2016 had 38 radiation sessions (with continence waited the minimum 3 months after surgery to do radiation). Started January 2017 PSA was .080. PSA actually doubled while having radiation. I had "persistent PSA" . Doubling every 3 to 5 months by July 2018 its 1.35. Fast doubling time low PSA . I had 3 body body scans from mid 2016 to end of 2017. Nothing as far as metastasis found. For myself my MO (and my other at UCSF) decide GA68-PSMA. Better then Axumin is their thinking . GA68 tracer only "ties on" to prostate cancer cells. I was in the "sweet spot" of PSA number to use it for success. Last October 2018 PSA of 1.99 had trial at UCSF (I live in the SF Bay Area). Next day was told that I have multiple (more then 10 nodules 10mm and smaller) in both lungs. Just lungs for aPC rare. Side twist to this is I'm a 14 year stage 2 breast cancer survivor. Radical Mastectomy, chemo etc. Since lungs mets rare if this were not a GA68-PSMA scan many MO's would have been more inclined to think these nodules were related to my history with breast cancer (or something else). GA68-PSMA answers the question when it locates PC cancer cells they are PC. Amazing seeing what it shows. I'm very fortunate (not that its it my lungs!)to have had this scan. For me it has probably found my mets a year before anything else. I truly hope it is a future standard for diagnosis before surgery is considered, and after for needs like mine. For me it was an incredible success. Instead of months now maybe I have years to wrestle this. Started ADT in November. Zytiga, Prednisone and Lupron. Today is CT scan hopefully to see the nodules. Only way to monitor me is scans and PSA. Meet MO tomorrow for review. and followup.... Hopefully this is a small help!

[sjc2]

Wow you've had a wild ride! We just found out my husband has the BRCA2 mutation and were told by the Genetic Counselor he should get a though breast ck up yearly due to his increased risk for male breast cancer. When I asked WHO he would see to do this exam, she wasn't sure. She said to ask our MO, but I'm not sure she will know since she specializes in prostate cancer. His next appt. is in April. Do or did you get breast exams and if so what type of doctor does this for men?

The GA68-PSMA scan sounds like just what he needs to answer our concerns for the spots in his lung. I don't know anything about it, is it something he can ask for or is it just done in trials? Thanks for all the info, it's very helpful! I pray you'll do well and continue to fight this beast!

[Sxrxrnr1]

7 years ago I had requested of my MO to have a Pet Ct. Although never having submitted to any therapy at all for my G9 diagnoses in 2005, I religiously had regular PSa’, Mrsi’s, and Pet CT’s

On this particular Pet Ct a lesion was detected on my right lung, upper lobe. Right lung has 3 lobes, left lung only 2.

Consulting with my MO, was it a PCa met, or a lung cancer?

Decided to do a biopsy,,,not easy on a lung. Pathology report said NSCLC(non small cell lung cancer)carcinoma.

Found a great surgeon at UCSF that performed basically a lumpectomy and snatched out an 8mm lesion successfully. Had no chemo,,he was an early researcher in genetics of cancer, determined chemo would be of zero value to me. Upper lobe remained in place, no broken ribs, uneventful recovery, out of hospital in 4 days.

Annual Pet scans, all still clean. Lung cancer, if no recurrence within 5 years you are deemed cured,,LC being a far more aggressive rapidly dividing cancer than PCa.

Incidentally a non smoker for 45 years at the time. Non smokers for 20 years have same risk factor as never smokers for LC. Doc suggested possibly Radon exposure,,,yes I know,,,a major risk factor for LC.

Thank you PCa for requirement for Pet Ct screening giving early heads of LC while still curable,,PCa could be said to have saved my misbegotten life.

LC is very close to Pancreatic cancer in patient death rate. Over 90 percent expire within 5 years,,,Pancreatic cancer close to 98 percent. PCa is close to 100 percent survival post diagnoses at 5 years and almost that at 10 years,,,,treated or not. There are only 3 or 4 cancers that have a better survival outcome than PCa.

Lance Armstrong’s testicular cancer as I recall has the highest survival rate,,,non-melanoma skin cancers excepted.

There is no watchful waiting permitted with LC.

[sjc2]

So happy you caught the LC so early and are cured of it! Reading what we've had done so far, but getting no real answers, due to the possibility the biopsies were not taken from the spots that showed up on the Axumin Scan, do you think we need to have more done now or wait for the chest X-ray in 1 year, as the lung doctor ordered? I know it's just your opinion, but since you've be through it, I'd like to hear your thoughts. Thanks!

[j-o-h-n]

Would you be kind enough to tell us your location, treatment center and doctor(s) names(s)? This info helps us help you. Thank you.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 02/14/2019 7:59 PM EST

[sjc2 in reply to j-o-h-n]

Alabama. Urology Centers of Alabama is the group of doctors - Urologist Dr. Burrus, MO Dr. Hamilton, RO Dr. Larson and a patient team of doctors that meet each week to discuss each case, with treatment plans. He is seen at the Van Scott Cancer Center (part of the group). They specialize in prostate cancer.

[j-o-h-n]

Thanks for the reply. Hopefully someone here knows your doctor(s) and where you're being treated and gives you some info that will help or guide you. Keep fighting those no good fxxxing cells.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/15/2019 1:11 PM EST