Strange case of my Dad's PCa - Advanced Prostate...

Advanced Prostate Cancer

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Strange case of my Dad's PCa

iLoveDad profile image
25 Replies

As many of you know, I have recently posted about my dad's Bone Mets PCa. Here's the strange part about my dad's case, I was hoping if someone experience this or know what's going on. My dad has been visiting urologist for the past two years, and did regular checks and taking Tamsulosin pills for urinating. According to his first path report, there are no prostate cancer cells found. Second report which was in Jan 2018, it also shows no cancer cells found. However, it only happen when they extracted from the bone and did CT, PET scan that shows he has Stage IV Bone Mets PCa. I've spoken to some people on forum, they mentioned this is really strange and extremely rare because it appears that he has 25 cores and hardly this will be a miss site. Has anyone experience this before? The doctors are clueless too on why its not there but its on the 10th rib and lymph node. Anyway, here is the report I would hope someone can share the same experience. Dad is currently on Lucrin Depot 11.25mg, 3 months basis, first injection started on 6 March 2018.

PS: I found this link, i wonder if this is the explanation to it: prostatecanceruk.org/prosta...

25 Aug 2014 first Path Report:

DIAGNOSIS

A to H. Prostate, TRUS core biopsies: Foci of chronic inflammation & atrophy.

GROSS DESCRIPTION

Multiple pieces of prostatic tissue are recieved fixed in formalin labelled as follows:

A. Right apex x 2 (1.0 and 0.4 cm)

B. Right mid x 2 (1.5 and 1.0 cm)

C. Right periurethraf x 2 (0.9 and 0.6 cm)

D. Right base x 3 (1.0, 0.7 and 0.2 cm)

E. Left apex x 4 (1.5, 1.2,1.0 and 1.3 cm)

F. Left mid x 3 (7.1 , 0.9 and 0.2 cm)

G. left periurethral x 2 (1.4 and i.0 cm)

H. Left base x 2 (1.3 and 0.5 cm)

B blocks no reserve. ce1

MICROSCOPIC DESCRIPTION

A to H. PRostate, TRUS core biopsies:

The cores of prostatic tissue show foci of atrophy, basal cell hyperplasia and chronic inflammation. No high-grade prostatic intraepithelial neoplasia (PIN) or invasive maglinancy is evident.

29 JAN 2018

DIAGNOSIS

TRUS PROSTATE BIOPSIES:

A TO H.

No high grade PIN or invasive prostatic adenocarcinoma seen

Request form stated as

- Raised PSA = 17.8

- 2nd TRUS biopsy

- PET Scan suggest Ca prostate with possible metastasis in lymph node and bone

GROSS DESCRIPTION

Received multiple pieces of prostatic tissue fixed in formalin labelled as follows:

A. Right apex x3 (2.0, 1.5, 1.0 cm)

B. Right mid x3 (1.3, 1.0, 0.5 cm)

C. Right periurethral x3 (7-2, 1.2, 0.5 cm)

Q: Right base x3 (7.2,7.0, 1.0 cm) E. Left apex x4 (1.3, 1.0, 1.0, 0.5 cm)

F. Left mid x4 (1.5, 1.0, 1.0, 0.3 cm)

G. Left periurethral x4 (7.2,1.3, 0.5, 0.3 cm)

H. Left base x3 91.5, 1.3, 1.0 cm)

The tissue is completely passed for histological examination (8blocks).cel

MICROSCOPIC DESCRIPTION

A. Right apex

Two cores of benign prostatic tissue

B. Right mid

Three cores of benign prostatic tissues

C. Right periurethral

Three cores of benign prostatic tissue

D. Right base

Three cores of benign prostatic tissue

E. left apex

Three cores of benign prostatic tissue

F. Left apex

Four cores of bengin prostatic tissue

G. Left periurethral

Four cores of benign prostatic tissue

H. Left base

Three cores of benign prostatic tissue

Here's the PET and CT SCAN:

MAIN FINDINGS:

1. The left 10th rib destructive bone lesion with soft tissue component shows intense FDG

uptake (SUVmax 7.6), suspicj-ous for metastasis.

2. Intense FDG uptake seen in bil-ateral external il-iac lymph nodes, the right with SUVmax 4.9

(Im 241) and the left with SUVmax 6.1 (Im 240) suspi-cious for disease. A further right

internaf iliac lynph node shows only mild FDG uptake (SUVmax 2,0, Im 243) but j-s al-so

suspicious for disease,

3. Enlarged prostate gland with mild heterogenous EDG uptake. There is slight focaf increased

uptake in the left posterior aspect of the prostate gland (SUVmax 4.0, Im 256) which is

indeterminate however, in view of rising PSA 1evels and bifateral- i-l-iac nodes, prostate

carcinoma is not excluded.

4, Status post distal pancreatectomy and splenectomy for IPMN. Stable sna11 tubular fluid

collection in the surgi-ca} bed extending from the distal pancreas to the stomach with

calcifications. Stabfe mil-d soft tj-ssue thickening wi-th minj-mal- FDG uptake (SUVmax 2.4, Im

170) at the distal pancreatectomy surgical bed is stabl-e since CT of L9/03/1-4 and is 1i-ke1y

post-operative. No evi-dence of local- recurrence.

Other findings:

No gross i-ntracranial mass fesion or significant metabolic abnormality.

No FDG avid cervical or supraclavicuLar adenopathy. The nasopharynx, oro- and hypopharynx are

unremarkable. Physiologj-ca1 FDG uptake is present in the tonsifs.

No FDG avid hilar or medlastinal- adenopathy. No FDG avi-d pulmonary nodule. No pleural or pericardial effusion. Prior midline sternotomy, tricuspid and mi-tral- annuloplasty. Minor

atel-ectati-c changes in the lung bases,

Stabfe hepatic hypodensities with no discernible FDG uptake are too sma11 to characterise.

Uncomplicated chol-elithiasis. There are stable small non-specific abdomi-nal- nodules in the

Ieft anterior abdomen (Im 177 vs 4-44) , left posterior abdomen (Im 167 vs 4-43) and anterior

to the urinary bladder (Im 241 vs 4-136) with no discernibfe fDG uptake. Mil-d FDG uptake

within the bowel and stomach is likely physiological.

He was then asked to do further PET SCAN and here is a portion of the report:

MAIN FINDINGS:

1. The left 1Oth rib destructive bone lesion with soft tissue component shows intense FDG uptake

(SUVmax 7.6), suspicious for metastasis.

2. lntense FDG uptake seen in bilateral external iliac lymph nodes, the right with SUVmax 4.9 (lm

241) and the left with SUVmax 6.1 (lm 240) suspicious for disease. A further right internal iliac lymph

node shows only mild FDG uptake (SUVmax 2.0, lm 243) but is also suspicious for disease.

3. Enlarged prostate gland with mild heterogenous FDG uptake. Th-ere is slight focal increased uptake

in the left posterior aspect of the prostate gland (SUVmax 4.0, lm 256) which is indeterminate

however, in view of rising PSA levels and bilateral iliac nodes, prostate carcinoma is not excluded.

4. Status post distal pancreatectomy and splenectomy for IPMN. Stable small tubular fluid collection

in the surgical bed extending from the distal pancreas to the stomach with calcifications. Stable mild

soft tissue thickening with minimal FDG uptake (SUVmax 2.4, lm 170) at the distal pancreatectomy

surgical bed is stable since CT of 19103114 and is likely post-operative. No evidence of local

recurrence.

IMPRESSION

Overall findings may suggest underlying prostate carcinoma (possibly in the left postero-lateral

aspect)with FDG-avid bilateral pelvic nodal and bone (solitary left 1Oth rib) metastases. Further

imaging and histological correlation is however suggested.

On February 2018 this year, he went for tests and reports shown that his Prostate is CLEAR, however since PET SCAN shows high level of PSA, he was advised to do biopsy and they found out that it has spread to the bone, and its metastasis. I do not have information such as Gleason score, etc like what many of you have, but here is the report that was given to us:

DIAGNOSIS

LEFT TENTH RIB LESION: Metastatic Adenocarcinoma,' Favour Prostatic Primary

GROSS DESCRIPTION

SPECIMEN LABELLED AS 'LEFT TENTH RIB LESION':

2 tissue cores are received fixed in formalin, 0.1 to 0.4 cm. The tissue is completely passed for histological examination. (1 block) tyn

MICROSCOPIC DESCRIPTION

LEFT TENTH RIB LESION:

Section shows lytic bone lesion with metastatic adenocarcinoma surrounded by desmoplastic stroma. There is nuclear hyperchrmasia, inconspicuous large nucleoli, Immunohistochemical stains with appropriate controls show the following:

Positive: CK19, PSA (Focal), PSAP

Negative: CK7, CK20, P63, Hepar-1 TTF-1

Interpretation: The immunohistochemical stain results support a prostate primary.

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iLoveDad
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25 Replies
snoraste profile image
snoraste

With the information you have provided, it’s a very strange outcome. There’s something missing.

You have listed a correct list of tests. If you have not already, seek a second opinion from a reputable cancer center.

iLoveDad profile image
iLoveDad in reply tosnoraste

I try to persuade my dad to see another doctor and transfer however, his doctor informed him that it is not needed. We are currently in a reputable cancer center, the doctors did mentioned that it is a very strange case. What confuses me is they hurried him right away to do injections.

snoraste profile image
snoraste in reply toiLoveDad

I’m glad you’re at a reputable center. If they started him on hormone therapy, it suggests to me that they have enough information to get the ball rolling.

There’s a lot for you to read up on on this forum. Have you done any genetic testing?

Please post additional information as they become available to you - Gleason score, PSA progression, etc. You’re in the right company.

iLoveDad profile image
iLoveDad in reply tosnoraste

The reason why there is no Gleason score is because there is no cancer cells found there. So Gleason score can't be given to us. I've read up the link above on my post that this might be a rare PCa case or miss sites(but according to others its unlikely as 25 cores). As for PSA, he is currently on 17.8H, I am not sure what "H" means, the next treatment and checkup will be in June, my concern is if the gap is too far apart? Is it really fine not to visit doctor within 3 months with HT? What I'm afraid is the hospital might not be as good, Im trying hard to persuade him to go to the best one.

Do you mean genetic testing for my Dad or for my brother?

snoraste profile image
snoraste in reply toiLoveDad

In June?? That seems very odd given his distant mets. My suggestion, based on what I currently know, is to get a second opinion.

iLoveDad profile image
iLoveDad in reply tosnoraste

He took his first injection of Lucrin Depot 3 days ago, next visit to doctor is in June. That's what given to us. I'll try my best to transfer him. Its hard to persuade him.

in reply toiLoveDad

My mom is 90 , good luck swaying her to do anything against her will . She’s stiil in charge . independence is everything as they get on in years. I’m the baby of the family. Always will,be in her eyes. That’s o k . I’m looking out for her.. Very lucky he has you.. take care.

in reply toiLoveDad

Injections first line.not unusual to get that started quickly.

iLoveDad profile image
iLoveDad in reply to

I understand what you're saying, I have been trying to persuade him to transfer, still no avail. He's insisting on just waiting till June to see. I'm trying hard to get hold of my cousin. Its frustrating as Im far away and limited ability to do things. My cousin told me to respect his decision but as children we are worried. I believe he is feeling exhausted going through all the tests. I'm trying to give him positive support.

in reply toiLoveDad

It a whirlwind of fear and not knowing.. I’m sorry for this. We all go thru it. I pray for your health and happiness throughout your life. You can not force a parent to do or accept anything they don’t want to. Your hands are tied .. so to speak. You do what you can as a loving child.. I’m the youngest, mom is 90 and she’s on her own path. Independent Irish catholic women . Strong spiritually . It sucks to see your parents slip . Love and support. That’s all we can do. Be there when they need us.. Hang in there... it’s a long haul if we are that lucky to live we will always be addressing APC. . He’s dad and the patriarch . Respect is what he needs, respect his wishes. Your caring is the “ good “ part of having a family that truely cares..we all hope our families act as you are. It’s beautiful , the love you have for him.. Bless you!

Tall_Allen profile image
Tall_Allen

It is a rare kind of prostate cancer, but far from inexplicable. Most PC cause "blastic" bone lesions, whereas his are lytic. Most PC will not show up on FDG PET until very late stage disease. The fact that his is showing up early points to a rarer type. I would definitely have all the biopsy cores sent overnight to Epstein at Johns Hopkins for his expert appraisal. He may see something the first pathologist missed. Many of the lytic forms are hormone-resistant , chemo-resistant, and/or radio-resistant. His oncologist hasn't run across this type because it's rare. I'm sorry I don't know any oncologists in Croatia - can he be seen by an oncologist in Germany or Turkey?

Here's info for sending biopsy cores to Epstein. You can contact them to see if they will accept international mailings:

pathology.jhu.edu/departmen...

iLoveDad profile image
iLoveDad in reply toTall_Allen

Where did you get Croatia from? We are from Singapore. I'm not sure if we can provide the reports to Johns Hopkins, as the reports belong to the hospital. I'll need to ask. We will be transferring him to National Cancer Center Singapore. Currently he is in Changi General Hospital. But once again, thanks alot. I'll have to check if its "Legal" to send in the reports as these are sensitive and I don't want to get into trouble for that.

Dan59 profile image
Dan59 in reply toiLoveDad

The reports belong to you, a second opinion by Epstien is a great idea, he is considered the best Prostate pathologist in this country, It should cost only $200 american. It should be just a matter of having the hospital send them. Dr Steven Tucker is an expert Prostate specific medical Oncologist from this country that practices in Singapore

Dan

iLoveDad profile image
iLoveDad in reply toDan59

Thanks for the information! I'll discuss this with my Dad, I need to ask for his permission before sending. It was quite hard for me to get the full report from the hospital. Getting them to send to Hopkins is even harder. But I'll try my best and discuss with Dad.

iLoveDad profile image
iLoveDad in reply toDan59

I have checked on the doctor above. He is a private doctor hence it is insanely expensive. There's no subsidies for choosing a doctor. We got to find alternatives

in reply toDan59

How many pesos is that?

iLoveDad profile image
iLoveDad in reply to

Sorry I don't know in Pesos I believe Pesos are used in Philippines? Are u from PH? :) Private doctors consultation alone can be ranging from 2k USD above, just consultation alone. I personally visited a private doctor for my nose, a small epistaxis issue that requires me to laser off my vessels, that costs me a whopping of 3.5k USD! Lesson learnt! That is also one of the reasons why we go for Government hospitals like Cancer Center, they provide subsidies, the first lucrin depot ADT costs us 350USD after subsidized from Govt. Hope that helps.

in reply toiLoveDad

Sorry for my attempt at humor on the pesos. I’m close to Mexico. I was jousting dan59 about $200 us . How do you like Singapore? Very busy ? The photo above is my front yard in the Arizona desert. I’m praying for your father to get good results and for you both to have some quality time together . Make the most of every day ...

Tall_Allen profile image
Tall_Allen in reply toiLoveDad

Sorry- I remembered you weren't in the US - I forgot where. It isn't the reports - they have to send the actual biopsy slides. The reports won't tell you anything you can't already see for yourself. They have to look at the tissue under a microscope to check for small amounts of weird cell types that the pathologist missed because he wasn't looking for it. In the US, it is a matter of course to send the biopsy slides for a second opinion, but laws differ and sending medical stuff internationally may require special forms - I really don't know. If you can't arrange it, at least ask the pathologist at the National Cancer Center for a second opinion on the slides.

iLoveDad profile image
iLoveDad in reply toTall_Allen

Yeap I highly doubt we can do that too, I've just read Hopkins website and found out about Slides actually mean by actual biopsy. I almost thought it was just reports (PDFs) and wanted to send it in haha. But definitely I'm going to transfer dad on Monday. My cousin will be assisting since I'm far away. Thank you once again!

BigM62 profile image
BigM62

But also, not to worry you. I have lytic spine mets and only PSA of 11 at dx - strange yes- but respinded to chemo very very well. Treatment will likely help your dad.

But to the points above, its important to see a specialist, understand the fine details of your dads case and get the RIGHT treatment.

I never would wait 3 months. Data shows zytiga or chemo early along with the HT is the way to go. I started chemo 7 days after dx.

iLoveDad profile image
iLoveDad in reply toBigM62

Thanks for the encouragement, I have spoken to my cousin who is in Singapore right now and assisting me since I'm living in US. We have decided to transfer to the main cancer center (National Cancer Center in Singapore). Currently our specialist team only given us HT and told us that transferring is not necessary yet as he already has a team of oncologists in midst of discussing his case. But no one knows when they are ready, so I do agree with all of you to transfer my dad. I'll update again on Monday when he revisits the doctor.

in reply toiLoveDad

Sorry again I thought you were in Singapore..

larry_dammit profile image
larry_dammit

It sounds like what my oncologist and I went thru, doctored for 20 years prostate had a hard spot on it all along was biopsy,no aggressive cancers, April 16 PSA had rose to 3 nothing special, bone pain August of 16 stage 4 with PSA of 30. Doctors had ordered ct scan but no contrast in April. Key was the contrast. In August they ordered full blood panel and ct with contrast. Alkaline level was 900 and the contrast showed all the cancers in my bones ,back and lymph nodes. It’s all about the right tests. Don’t know if this helps but that’s what happened to me.

Larry

iLoveDad profile image
iLoveDad in reply tolarry_dammit

Thank you so much for your information. My concerns were if there is treatment for it to control it. Seeing you as a warrior is great, you probably didn't realize but you guys have actually comfort me alot with your comments. GOD BLESS!

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