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Old 06-23-2012, 06:10 PM   #1
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DH new PC dx - still in shock

Dear Members:

Forgive me if this jumps around, I'm still trying to "wrap my mind around" yesterday's news. We are still in the diagnostic phase, but this is not looking good at the moment. DH (Darling Husband) is 62, and at last month's annual screening was asked to go for an exam due to rapidly rising PSA. I am unclear on even this as it sits at 4.3 from 2.5 last time (13 mos.)..from what I'm reading under 10 isn't high? Exam revealed prostate double in size from last year, so was referred for biopsy. Yesterday it came back with 4+3=7 Gleason in upper right sample. Urologist has scheduled an MRI next, but has said that surgery is "the" option, and only discussed robotic vs. traditional.

My husband has not had any urinary problems, but has been a bit more fatigued and had some high "groin" pains lately.

When he mentioned a 2nd opinion, the doctor said that was fine but to remember that it was the labs stating he had cancer, not the doctor.This is apparently a less common PC. Where do I even begin to find information? I have a medical background and I'm reading a lot of articles predicated on "this is new treatment, so the results aren't substantiated", etc.

My husband is obviously scared for us all, and I would like to ask the men what is the thing that spouses can do to help ease your mind while dealing with this dx? We're stronger than you think, even if we're scared, too.

God Bless You All!

DW

Last edited by Midnight Dream; 06-23-2012 at 06:18 PM.

 
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Old 06-24-2012, 04:03 AM   #2
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Re: DH new PC dx - still in shock

DW

Welcome to the board.

I am not sure if I agree with your comment in you girls being stronger than us boys. Nevertheless, you girls confer us the highest confidence when we confront the diagnosis of cancer.
My wife was the best.

Obviously we all experience scared moments (I cried) . However, being diagnosed with prostate cancer (PCa) it does not mean that one got a death sentence. There are many ways to treat the disease and in the majority of the cases treatments are successful. PCa is also a slow growing cancer.
I wish you and your husband peace of mind.

I firstly recommend you to get some reading materials about the disease. Good books are;
A “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition June 2007); which may help you understanding options between surgery and radiation.
“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for systemic cases.
“A Primer on Prostate Cancer, The Empowered Patient’s Guide” by Dr. Stephen Strum and Donna Pogliano; which explains well the whole process of diagnosis.

You may also prepare a list of questions to expose to the doctors you will be consulting. You can get lists from the net and adapt the questions to your case. Just type “Questions to Ask the Doctor“ in a net search engine.


You need to share more data on the diagnosis to receive better opinions on your husband’s case from survivors in this forum. Can you describe the biopsy details (number of needles and volume, etc) and the clinical stage attributed to his case?
What about the results from DRE. Did the doctor perform any examination?
What about the laboratory. Is it a reliable place?

It is common to get second opinions on the biopsy samples from laboratories specialized in PCa, if not satisfied with the initial results. You can send the samples by courier or you can request your doctor to do so. John’s Hopkins and Bostwick are two reliable laboratories where you can get pathological opinions on the diagnoses and on treatments. Just type the names in a net search engine, for the addresses.

The Gleason pattern of 4 in the score of 7 relates to an aggressive type. However, Gs7 is intermediate risk for recurrence. Surgery (RP) is usually recommended in contained cases (the whole cancer inside the gland), but if extra capsular extensions are present then radiation (RT) may be a better choice. It all depends in one’s status, so that proper diagnoses are vital.
The difficulty in finding extra capsular cancer (metastases) is that CT or traditional MRI (image studies) do not detect small tumours, particularly in cases of PSA lower than 10.

I would recommend your husband of choosing MRI equipments of higher resolution such as Tesla 3 with spectroscopy. You can comment that to his doctor. He could also get image studies with the newer contrast agents providing still better diagnoses, but these are only available in certain centers.

Second opinions on PCa treatments is a “must do thing”. Some doctors will give you biased opinions based on their field of trade (urologists are for surgery and radiologist are for radiation). The best answer may come from a medical oncologist specialized on Pca, but you are the ones to decide.

Your husband should also be aware of the risks and side effects each treatment entails. Radicals can cause permanent incontinence or ED or acute ulcerative colitis. Thought, the majority of patients recovers from the side effects but never return to the same conditions as before.

Diagnosis and treatment outcomes are also better if done at modern facilities with highly experienced doctors. You should inquire on the CVs of the team that would be caring for your husband.

I am 62 years old too. I was diagnosed with PCa twelve years ago when 50. My PSA was worse than your husband at 22.4 with a Gleason score of 5 (2+3) but voluminous cancer (all 6 needles/biopsy positive to cancer). I got 4 second opinions and decided on open surgery. Since then I experienced failure RP and failure SRT, and now I am on intermittent hormonal therapy.

Our cases cannot be compared but I managed to hold the bandit at bay and your husband will do it too.

Hope for the best.

Baptista

Last edited by Baptista; 06-24-2012 at 04:16 AM.

 
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Old 06-24-2012, 04:27 AM   #3
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Re: DH new PC dx - still in shock

Thank you, Baptista:

Not stronger, just stronger than some think! DH didn't tell me everything, but did explain that the Dr. said that one of 4 with a double prostate size had PCa and one of 10 of those had this variety. I will call the Urologist's office to get more information on Monday. He was trying not to cry in front of the nurse who seemed very distraught, so didn't hear everything. The biopsy used 12 needles with only one showing the cancer, but was the one that would be the most likely area to have spread to other organs. The doctor said the MRI was needed because there was no way to know if the samples were "dead center' or "on the fringe" of the tumor. This urologist is the one who performed the earlier exam noting the prostate was twice the normal size.

One of my concerns is that my husband already has DVT issues (a possible side effect of surgery), and no form of thinner is allowed for a month prior to surgery. Another is if I should suggest anti-depressants. My husband was already dwelling on an early death after losing his brother 3 years ago, and his father died of cancer at 65.

Thank you again, I will order these books. The book the urologist gave us seemed fairly vanilla.

DW

 
Old 06-24-2012, 06:37 AM   #4
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Re: DH new PC dx - still in shock

DW

One positive in 12 needles relates to a low voluminous cancer. The PSA value may in part be due to coexisting benign hyperplasia. What is not clear is your comment about spread to other organs. The biopsy would aim at the two lobes and it could include the inner areas close to the urethra, PIN, the outer nerve bundles and the Seminal Vesicles. Close organs such as Bladder and Rectum are not tested.
In any case, you should request a copy of the pathologist report where details are written. I am surprised that the doctor did not give you yet a clinical stage, however with only one positive sample your husband could be a T1c if the DRE was positive only for BPH (double sized gland), otherwise it would be T2. If extra capsular extensions are found, then he is a T3.

Not to alarm you but the doctor response is ambiguous when saying that the MRI would verify if the sampling were done at "dead centre” or "on the fringe". Such image study is not that accurate. The biopsy is usually guided with TRUS, in cases of positive DRE, and the needles/cores are marked in the gun. I would recommend you to get a second opinion on the samples.
Moreover, the MRI should only be performed after allowing time for the prostate to heal from sampling taken at the seminal vesicles. Surely the lower abdominal MRI is excellent to rule out metastases if it is done with high resolution machines. The "groin pains” can also be checked in the MRI, and so it is the size of the prostate. However, the groin pain could be related to a case of proctitis which may be the cause behind BPH.
Inquire on the above with the doctor.

You should also include in your List of Questions the DVT concerns and about him in getting depressants. I do not think that neither would interfere prohibiting a treatment for the cancer.
I am not a DVT patient but my father died of a fatal pulmonary embolism in the hospital after a car accident. With such hereditary concern, my surgeon (in 2000) decided to do the surgery with a boot-type device attached to my lower legs for massaging and kneading, ostensibly to avoid any risk of blood clots.
Interesting is that DVT patients are at higher risk for contracting PCa after an issue of DVT and the same applies on reverse to the ones that had PCa surgery. I am on a daily aspirin (100mg) since the operation twelve years ago. Your husband may be a typical case too.

I sincerely hope that your husband recovers from the “shock” with the diagnosis.
My wife helped me a lot in researching about diagnoses and treatments. She accompanied me to the doctors and took notes aside of the conversations. We later would put together the info we had gathered.
Your husband is lucky in having you to care about him. Be positive. You both will overcome this difficult moment in your lives.

Baptista

 
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Old 06-24-2012, 08:38 AM   #5
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Re: DH new PC dx - still in shock

Thank you Baptista!

I believe DH was told the MRI would tell the stage. I wasn't "allowed" to go to the last consult, because before this week I was the "health issue" patient in the family and he didn't want me driving home alone in shock 45 miles in case it was bad news? I will go now that the initial shock is over. I had to cancel the colonoscopy that had been scheduled. One thing at a time, but that had been a bit inconclusive last time. Not enough to concern the doctor at that time.

These samples I presume are more of a scoop, rather than puncture? He said the 4 was on the left, the 3 on the right. Luckily, the accessible facing of the prostate he was told generally is the "affected" area.

I will know more after tomorrow, and thank you for your information! I believe the nurse "forgot" to add the lab results to the report they sent home this trip, so will ask for that specifically.

DW

P.S. The nurse was unable to offer much more than promising the pathology report we should've had Friday, so stage isn't listed yet. The lab used was Predictive OncoDiagnostic. I have been researching a second opinion and onocologist who looks to be well respected (Dr. Daniel George out of Duke). The MRI isn't scheduled for another 3 weeks. I'm wondering if DH should also request a bone scan, he's had back pain this year and has a very high pain tolerance (thankfully).
I am naturally the "maven", so will now be the research maven as well. Thank you so much!

Last edited by Midnight Dream; 06-25-2012 at 11:08 AM. Reason: Additions

 
Old 06-26-2012, 12:21 AM   #6
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Re: DH new PC dx - still in shock

Hi DW

I am glad to know about your willingness in being the “accumulator of knowledge” in DH’s case but you could try to get him involved in this forum too. You may also suggest him to attend a local community cancer gathering at the area where you live. You may check at the site of Us TOO prostate cancer support.
Those places are not for crying but sharing experiences and gathering information. Very good for alleviating stress.

From your descriptions I am not so sure of the type of biopsy the doctor has performed on DH. I recall reading about OncoDiagnostic Laboratories being pioneers of the so called Fine Needle Aspiration biopsy. This is not the typical core needle biopsy but a type useful in cases where suspicious of existing cancer is high (high initial PSA; positive DRE; positive CT, etc.). As strange as it can be, this type of biopsy is known for false positives too.
In any case, the pathologist doing the analyses is the “key person” of the final conclusions. He will check in detail the type of cells, etc., he found in the cores.
It may be wise to get the report and check for the type of biopsy, etc., before consulting other doctors.

The medical oncologist Dr. Daniel George is a researcher in matters of prostate cancer, particularly on the newer medications. He may be an excellent choice for a second opinion. I would get the referral from DH’s present doctor and call directly the office of Dr. George to reserve a consultation.
Try getting the less biased opinion and discuss about all alternatives with pros and cons.

Unfortunately, both traditional MRI and (whole body) Bone scintigraphy scans are not very accurate in detecting small tumors of prostate cancer. They have not enough resolution to “catch” cancer smaller than 1.5 mm in size.
However, there is nothing to lose for doing these tests now. They will add basic information and give peace of mind, and the results will serve in future diagnosis as comparative data. Moreover, if the pain is a cause of metastatic cancer, then a bigger tumor would be expected to exist, which in turn it should be seen. There are also cases with a type of cancer that produces low levels of PSA but form big tumors. Go figure...........

Other tests that DH could do and that will help in the diagnosis is a free-PSA, PAP and Testosterone (all from a blood sample). Another test recommendable is a bone density scan (DEXA) to check for osteopenia/osteoporoses. Pca and treatments affect bone integrity. Some patients are surprised when detected with advanced osteoporosis.

Good luck

Baptista

 
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Old 06-28-2012, 06:17 AM   #7
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Re: DH new PC dx - still in shock

Thank you Baptista!

The positive sample alone was 1.5 mm, and I now see the concern from the map of the location (RB). Pathologist termed it Adenocarcinoma 4+3=7, the rest is benign with crowded acini in LLA (basal cells)? So, we are hopeful the MRI gives us an accurate picture later this month.

Thank you again!

 
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Old 06-29-2012, 07:17 AM   #8
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Re: DH new PC dx - still in shock

Hi DW,

I'll add my own welcome to the Board!

Baptista has already provided key information and insights, and your responses indicate to me that you are absorbing this information. Here are a few additional thoughts.

I strongly endorse Baptista's urging about second opinions on treatment and biopsy pathology. Especially in a case where a patient is dealing with DVT, surgery seems to pose substantial extra risk, in my layman's view. Radiation does not pose these risks. My impression is that your husband is getting a strongly biased presentation from the urologist.

Here are some additional excellent sources to complement those Baptista listed in post #2:

"Invasion of the Prostate Snatchers," Ralph Blum and Mark Scholz, MD

The Prostate Cancer Research Institute

The Prostate Cancer Results Study Group

Regarding bone scans, while the conventional technetium isotope scan is not too sensitive, as Baptista mentioned, there is a new scan that is much more sensitive and also fairly specific. It is known as the NaF18 PET/CT bone scan. While PET scans based on glucose metabolism are not of much use for men with early stage PC, this sodium flouride scan has proven to be quite good. I had this scan last December (negative result).

I empathize with your husband's worries about early death, especially after the schock of diagnosis. However, virtually 100% of low- and intermediate risk prostate cancer patients are alive at the ten year point, and 95% of even high-risk patients are alive at that point! A very small fraction of those diagnosed will eventually die of the disease, but that's based on treatment for those who need it.

Like Baptista, I suspect those pains are due to co-existing prostatitis, rather than cancer, but it could be either.

Take care and keep your spirits up,

Jim

 
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Old 07-01-2012, 11:49 AM   #9
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Re: DH new PC dx - still in shock

Thank you for the welcome Jim! DH isn't the type to attend support groups, but will do online research and discern what he considers "bad" information. He has the love and support of family and friends, and now is doing better with the diagnosis.

Luckily, I came very close to being a physician myself, so can absorb the information. I've started reading the books, and it appears this urologist's role here is strictly to do the diagnostics for the eventual oncologist or radiologist. Luckily for us, Duke is rated in the top 10 prostate cancer centers, so I feel confident we can get the best care once we know the extent of the cancer. DH is not thrilled with the prospect of another biopsy. They actually did 13 needles when I read the notes, the urologist wasn't pleased with one placement originally.

From what I'm reading, I would lean toward radiation at this point also. In viewing the report, the urologist was trying to say that he had no way of knowing yet if the 1.5 mm sample was the entire tumor or not. It was the top 25% of the sample, so could be larger if spread toward the top and vesticles, etc.

I will definitely make sure they are all aware that DH has already been hospitalized twice with DVT, and they really should've put a mesh in during his last episode.

Thank you all again so much! God Bless!

DW

 
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