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Gleason 9 Consult Questions to Ask?

Elsie189
Posts: 13
Joined: Nov 2014

Wife of newly diagnosed (as of 8:30 this AM) husband with prostate cancer here. It's never good when a doc calls early on a Monday morning as my husband's urologist did this morning. My husband was expecting to hear all the news this coming Wednesday to discuss the biopsy he had a week ago. Now he thinks the doc wanted to give him the bad news first so they can concentrate on treatment information on Wednesday.

I'm sorry I don't have those combo scores that make up the Gleason 9 score, so I'll probably be back on the boards later in the week once we have printouts. Because we both want to be as focused as possible during the consultation, we'd like to know what questions my husband should ask on Wednesday. My husband is 70, had "good" PSAs, but started having urinary problems four months ago then bloody urine a month ago. He's a thin, non-smoking runner who eats a healthy diet but had Agent Orange exposure in Viet Nam.

What questions should we prepare for the consultation in two days so that we get the most out of the visit? Thanks in advance.

 

 

 

 

 

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Dear Elsie,

I am sorry for your husbands diagnosis, and that you have to post here, but this is good place for information.

As you are probably aware , a diagnosis of a Gleason 9 indicates that there is an aggressive cancer.

Please let us know what led to your husband getting a biopsy.

What did the digital rectal exam indicate, what was the PSA history, any other diagnostic tests to date?

When you receive the pathology results from the biopsy, please let us know how many cores were taken; how many of these cores were positive, the Gleason of each core, and the involvement (that is the percent of the core(s) that was positive; also any other information that you find in the report.

Here is a thread that was done that will provide some information for you and your husband.

http://csn.cancer.org/node/258414

As you go through the above thread and  acquire  other information, please come back with questions, etc....at this site there are knowledgeable posters who can help you.

We are here for you.

 

Hopeful and Optimistic

VascodaGama's picture
VascodaGama
Posts: 3121
Joined: Nov 2010

I am sorry for the diagnosis of PCa.

Most probably the doctor wants to speed up the process, advancing with conversations on a treatment, in your next meeting, therefore informing you by phone the "conclusion" of the biopsy. This is typical of “busy” doctors because they have no power to decide. They may advise on therapies but are the patients that will make a decision.

In other words, the patient should try getting educated in prostate cancer matters including therapies and their risks and side effects (that will prejudice the quality of living) in a short period of time. Busy doctors have no time to teach patients. They will only pass on suggestions. However, treatments for PCa are not that easy and got many pitfalls one may lose in the “game" so that we need to be well informed and prepared, and should not rush into a decision before knowing the details and consequences. The best outcomes also follow the best diagnosis and that should be obtained before thinking in a therapy.

I would recommend you to prepare a list of questions to expose this time in the consultation and listen and write down notes about what has been discussed. You can tape the talks too and can call the office latter or return to inquire about something you forgot to mention or did not understand.
After “digesting” the contents discussed with this doctor, you may think in getting another (second) opinion from other specialist(s), so that you should request and keep copies of all test results, biopsy, etc. You can also request for referrals from this doctor.
Something you need to be careful is about biased opinions. Urologists most of the time recommend surgery and radiologists will recommend radiation. This is typical and you need to “brush” from your shoulder any dust from such guys.

Here are links to help you in preparing that list of questions;

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-talking-with-doctor

 

Booklet about diagnosis and therapy;

http://www.prostatecentre.com/sites/default/files/Prostate_Cancer_Patient_Education_Booklet.pdf

 

A “compendium” on Prostate cancer and care;

http://prostate-cancer.org/decision-aide/where-to-start/prostate-basics/

 

A book on Prostate cancer;

“Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (third edition); which may help you understanding options between surgery and radiation. Walsh is a surgeon so that the book is biased but still a good source for radical treatments.

Best wishes and luck in his journey.

VGama

 

Beau2
Posts: 261
Joined: Sep 2010

Elsie,

Very sorry to hear about your husbands PCa. 

You mentioned that he was a Vietnam vet exposed to agent orange. i am not sure if you are aware of the fact that the VA does offer VA health care and compensation to Vietnam vets exposed to agent orange who now have PCa.

Here is a link to information on the VA program:

http://www.publichealth.va.gov/exposures/agentorange/conditions/prostate_cancer.asp

 

best wishes and good luck.

Elsie189
Posts: 13
Joined: Nov 2014

Thanks all for your responses. This will help us formulate some questions for tomorrow AM. I'll keep you posted.

Ralphie62
Posts: 53
Joined: Feb 2010

I'mglad you're getting prepared for the appointment...sorry that you have to have it. I just wanted to let you know that my husband did very well with proton therapy at the University of FL at Shands in Jacksonville. There is also LT research at Loma Linda. You should google proton, and go on the Loma linda website. There is a freee book on proton therapy that my husband read, that helped make our decision. He had no neg side effects: he has no incontinence, no impotence, and felt good up until his last tretment. Everyone at the center was pleased with their care. Many had had surgeries that did not keep the cancer at bay. The important thing to know is that his urologist did not consider or offer this option. He was very opposed to the treatment, and pushed surgery, which, of course, he performs. You should read the blogs, even the old ones...I learned more about prostate cancer on these boards, than anywhere else. The people here are great. We are so thankful or PROTON therapy :) it saved his life, without ruining it....lisa

 

Elsie189
Posts: 13
Joined: Nov 2014

Thanks to all of you for responding to my posting as well as on other postings on how to prepare for my husband's consult this morning. All the advice was very helpful. Below are my husband's pathology results, which we partially understand. (Probability scores are a bit of a black box. Any translators in the house?) His PSA right up until biopsy day had been in the normal range. Obviously, that is no longer the case.

The doc ruled out surgery because my husband had two abdominal surgeries this year--appendectomy then blockage, plus his third pacemaker. So even though he's out running several miles right now, his body is older than his 70 years. The recommendation is for two years of hormone treatment, which will commence within weeks, and 8-10 weeks of radiation, which will begin in January, 2015. We still have to absorb a lot of this, consider the Johns Hopkins second opinion, and other options. Oh, and PS, he must have a colonoscopy ASAP to check on that neck of the woods. His last one was six years ago. So another concern. Any further observations will be helpful. Thank you again. Today would've been very different without your excellent advice already. No need to tread too lightly. We're tough and like things straight up.

Here's his pathology report:

Clinical stage T2B                                 Probabilities:

PSA 3.32                                            Organ confined 39

Gleason 9 (4+5)                                  Extraprostatic    37

100% of cores                                     Seminal vessels 19  Lymph nodes+4

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

 

Great that you met with the urologist, so have somewhat of an idea where your husband stands.

I don't completely understand what you posted about the pathology, hopefully another poster will.

As far as the pathology results, as I understand all of the cores that were taken were positive.......does the report that you have indicate how much of each core was positive?, and were they all 4+5=9, or were there other Gleason scores?

The numbers that you listed, is that the  probability for cancer in the Seminal vessels and lymph nodes 

.........

What led to the biopsy? Digital rectal exam(finger wave) results? Rate of change for PSA readings, what were all of your husbands PSA readings?

Did he have any diagnostic tests before the biopsy?

;;;;;;;;;;

Did the urologist discuss having a multi-parametric MRI with a Tesla  magnet with you? This can indicate extracapsular extension, although it is very probable that a man with extensive Gleason 9 has extracapsular extension.

 

Any discussion about a possible pet scan?

............

What insurance does your husband have?

.......................

Medical oncologists are the experts in administering various hormones. There are a few urologist who have a doctorate in this, but there  are  very few of these, so I recommend that you find a Medical Oncologist to lead your Medical team.

.................

Depending on how extensive the cancer is, your husband may or may not benefit from radiation, since it is possible that the cancer may not be in a treatment range. Side effects from each treatment type is cummulative, so it beholds you and your husband to do research to determine if there would be benefit from radiation treatment.

...............................

Good idea to have the colonoscopy now.

Additionally ,as a benchmark, good idea to have a bone density test  as well as a Testosterone level test.

.............. 

Research, read books, internet, and try to determine a local support group or groups in your area that are great for information.  

..........

 

Elsie189
Posts: 13
Joined: Nov 2014

Thanks for your input, Hopeful. To answer your questions about my husband's case:

 

--The DRE (digital rectal exam) led to my husband's biopsy despite his having good PSA. (Sorry, I don't have earlier PSA results. It was 3.34 on day of biopsy.) The prostate felt abnormal to the urologist.

--My husband is unable to have an MRI because of the metal pacemaker. The urologist will do a workaround with CT, X-RAYS, and contrast test of some kind (might be a PET scan. I will listen to the audiotape my husband made of the consult yesterday.)

--My husband had some kind of special urine test before the biopsy which showed cancer cells. The urologist says it's likely there is cancer in the urinary tract. Any comments out there on this additional dreadful news?

--My husband's Medicare Advantage plan turns out to be awful since it's limited to our area and the HMO network. My husband is working on getting his drugs through the VA since aggressive prostate cancer is associated with Agent Orange, which my husband was exposed to. He's in the VA system already because of his earlier heartbeat issue and needing a pacemaker at a young age despite seeming excellent health at the time. I'll probably pose a question about getting drugs and other benefits via VA somewhere on these boards or elsewhere. The to-do list is growing fast.

Imminent scenario:

--blood test, colonoscopy, bone scan, starting Casidex meds (hopefully from VA) for a drug that preps my husband for hormone shots in a few weeks. Somewhere in there is a PET scan (or is that the bone scan? Again, I have to bring myself to listen to the tape of the consult today.)

--3-month hormone shot in two weeks

 

 

January and beyond: 

--Radiation 8-10 weeks. There was something mentioned about GO markers in connection with radiation. I'll look it up.

--bladder exam every three months as biopsy showed slight thickening of the bladder. 

 

Sorry I'm fuzzy on details and timetables. I do welcome all advice. So thanks in advance for that. 

 

 

 

 

 

 

 

VascodaGama's picture
VascodaGama
Posts: 3121
Joined: Nov 2010

Elsie

Just as we though (above), the doctor wanted to move into a treatment and such may have been the bases of your consultation. Nothing to lose in proceeding but you should get more advices from other specialists in regards to the diagnosis and treatment choices.

I wonder why he did suggest the combo treatment of hormonal plus radiation (IMRT).
Have your husband done any image study?
What does the pathological report indicate?
Is there any description of cancer’s location?
Can you specify about the “blockage” he has done?

The colonoscopy should be done before anything. In fact, radiation treatments for prostate cancer are prohibitive if the patient has signs of existing ulcerative colitis around the premises of the prostate (within the isodose curves, the field of irradiation). Some doctors also have reservations in the hormonal treatment when treating patients with heart problems. You need to get advice from a cardiologist in regards to hormonal drugs, radiation and X-rays examinations.

I would recommend you to get a consultation (second opinion) at a cancer centre that analyses your man’s case with a team of specialists. Mayo clinic does that when consulting for treatments of prostate cancer. Surely you can investigate at other clinics/hospitals. Here is a link with details;
http://www.mayoclinic.org/diseases-conditions/prostate-cancer/care-at-mayo-clinic/why-choose-mayo-clinic/con-20029597

And now the possible translation in my layman’s opinion:

Regarding the clinical stage T2b; it means that the Tumour is considered confined within prostate, and that it involves more than 50% of one lobe but not both lobes. The Tumour may or may not be palpable (DRE) or reliably visible by imaging (CT, MRI, Ultrasound (X-rays), Gama, etc). This stage contrasts against your meaning of “100% cores” found in the biopsy. How many needles were taken?

Here is a link about details;
http://www.cancer.net/cancer-types/prostate-cancer/stages

Regarding the PSA = 3.32 ng/ml; the normal range varies with age. I do not know when he did start to get the test but you commented above of “been in the normal range… right up until biopsy day”. Typically, lower than 60 years old the range goes up to 3.5 ng/ml; above 60 y/o it goes up to 4.0 ng/ml.
Accordingly, the present value should be considered normal. However, Gleason 9 includes the highest aggressivity type of cells (poorly differentiated) which are known to produce lesser serum.
I wonder what have been the results of previous tests.

Here is a link about details;
http://www.medicinenet.com/prostate_specific_antigen/page3.htm

Regarding the Gleason score 9 (4+5); this is a classification given to the type of cancerous cells found under the microscopy. Gleason rates go from 1 to 5 and the score adds the type most prevalent (first number) to the second most prevalent (second number). Both rates found in the cores are aggressive which classifies these patients at high risk for metastases.
This cohort of patients usually fares better in combination treatments (not typical sequentials). Some guys start with chemo plus hormonal moving later to a radical (surgery or radiation). The purpose is to attack the cancer from several “fronts” to “oblige” it into remission.
His doctor’s suggestion of a combo therapy fits this concept, but one should firstly investigate if the body is fit for the therapy, and if the diagnoses are valid. Exams done with the best techniques and equipments (PET, MRI-3t, etc) can assure better identification of your husband’s status. Is the cancer contained?

Here are links to read about Gleason 9;
http://en.wikipedia.org/wiki/Gleason_Grading_System
http://www.nature.com/modpathol/journal/v17/n3/full/3800054a.html

Regarding the probabilities; these are your doctor’s thresholds based on his past experiences with PCa. His list indicates low probabilities for the cancer to be contained. The difference in such “be or not be contained” is that a radical treatment with intent at cure becomes elusive. The 19% probability of having metastases in the seminal vessels is still worse. Invasion in the lymph nodes is indicated so that the radiation planning should include them at its field.

You can read more details in the above booklet indicated in my previous post.

All treatments for prostate cancer have risks and side effects. You should know about them because they may prejudice the quality of living of your husband. The decision on a treatment should also consider what may and may not be acceptable. Drugs interaction should also weigh in the final decision. I recommend that you do other tests while waiting for consultations. Testosterone levels, vitamin D and bone health are important in hormonal treatments. Diet and a change in live tactics become important to counter the treatment effects. Here is a link to UCSF publication on Nutrition & Prostate Cancer, which print out I highly recommend you to get;

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

You have been wonderful for the care you are providing him. Family is what gives us the impetuous to go forward in these critical moments in life.

Best wishes and luck in his bumpy road ahead.

VGama

Elsie189
Posts: 13
Joined: Nov 2014

 



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Dear VascodeGama.

I will answer your questions in detail, as best as I can, when I can, in the next day or two. All of a sudden today, as we were filling out our joint Google calendars, with so many appointments for colonoscopy, bone scan, X-ray (can't have MRI due to pacemaker), radiology oncology consult, first hormone injection, and more!!! I wondered whether it's imperative to be on this express train or a local. We're probably going to get the Johns Hopkins second opinion service at a distance, but that takes ten days, which is close to when the hormone shots start, followed by radiation in January. 

So my global question is whether this T2b cancer my husband has with the numbers is so fast growing, he should hop the express hormone/radiation treatments right away? Or how much time can he take to get the second opinion, get a bone density, talk to his cardiologist, get the gastroenterologist's report after the about-to-be scheduled colonoscopy, etc? The way we're going, all those results will be coming in just before or just after the first hormone shot in two weeks. Six weeks after that, it's recommended that he start radiation the first week in January. Whew!

Below us his pathology report, keeping in mind he had two emergency abdominal surgeries in January of this year, supposedly brought on by burst appendix causing a blockage or a blockage causing burst appendix. Oh, yeah, third pacemaker replacement this year since age 50 (but a runner biker kinda guy with exceptional endurance) so not a couch potato.  

Clinical stage T2B                                 Partin's Probabilities:

PSA 3.32                                            Organ confined 39

Gleason 9 (4+5)                                  Extraprostatic    37

100% of cores                                     Seminal vessels 19  Lymph nodes+4

 
VascodaGama's picture
VascodaGama
Posts: 3121
Joined: Nov 2010

Dear Elsie

I can sense a bite of anxiety in your posts. I hope that my answer is of help to relieve some of your anguish. Remember that you are not alone. We all experience similar feelings at the beginning and struggle to find the right decision.

Please do not rush without knowing details of what you are doing. I am appalled for the way his doctor is leading his case. He is a busy guy for sure. Diagnosis by the phone, and then conclusions on your second meeting. He has just “sack” you and he doesn’t care for the consequences. He expected you to know details and decide within the three days (Monday to Wednesday) since his calling.

I recommend you to not trust this doctor. Get all the information (copies of tests, etc, and the biopsy cores and go to see another specialist. It seems that you are dealing with a VA but you can get consultations covered by the military system (free of charge) at private institutions. I hope fellas here help with their experiences regarding VA. Where are you living?

T2B is a guessed clinical stage indicating the probable “location” of the cancer. It means that it is contained but without an image study they cannot be sure of their statement. If extracapsular extensions (cancer spread out of the prostate) have been verified, then your husband would be a T3 case. In fact being a T2B or T3 would not alter the way of treating your husband. However, if cancer is found in bone (by the bone scan exam) then he is a T4M1 (stage IV) for whom radiation may not be the prime choice. Doctors prefer to keep radiation as a weapon for later attacks. The theory is that radiation cannot over impose previous irradiated areas.

Gleason score 9 is of the aggressive type. It needs attention and in most of the cases is an indication of probable metastases. But prostate cancer does not spread overnight, no matter where it is located at that particular timing. PCa needs blood to survive and travels via the circulatory system. This is in theory what classifies a cancer of beeing "fast", but it could be any Gleason. 
Your husband got time to have proper and due analyses and exams to verify which treatment may be more feasible for him, considering his other illnesses. He needs special care and more attention to details.

Starting the hormonal now or within two months does not alter his health conditions. Radiation should follow the procedure which is usually started 3 months after the first shot of hormonal drugs.

I bet that this doctor just looked at the calendar and saw the date when the radiation equipment is free, and wrote down your husband’s name in the list. Then he counted back the period required for the hormonal shot which obliged it to be done the soonest.
If for any reason you got confident and want to go through with this treatment at the above facilities, then you can request it to be delayed. You can call the office and ask for the shot to be done after securing the other exams in hand.

Typically the hormonal shots are administered after two weeks of taking an antiandrogen (Casodex bicalutamide). You could take it now but I think it better you do nothing before meeting another specialist. They will want to get “unstained” tests, in particular the testosterone that, in a Gleason 9 patient, becomes a very important marker (value before treatment) for judging the success of the treatment, and any progression.

Many urologists do not like to be contested by the patients, but they are not the ones that will suffer the consequences.

Best wishes and peace of mind.

VGama

 

Note; Regarding the VA benefits, you can try contacting the survivor named ralph.townsend1, via this forum mail. He had the AO problem and is a Gleason 9 patient, being treated at MD Anderson.

Some links that can help you about VA affairs;

http://csn.cancer.org/node/237449

http://www.mdanderson.org/

http://www.publichealth.va.gov/exposures/agentorange/conditions/prostate_cancer.asp

http://www.cancer.org/cancer/cancercauses/othercarcinogens/intheworkplace/agent-orange-and-cancer

 

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Vascos post is excellent and in my opinion on target.

You mentioned that you are not satisfied with your health coverage. It may be that you can switch to a PPO (where you can go to any doctor that you want) which I believe would start Jan 1 I am not sure of the dates that you may switch medical coverages, but I know that it is about this time of year. 

Best

Hopeful

Elsie189
Posts: 13
Joined: Nov 2014

Thanks Vasco and Hope. We are following some of your advice to slow things down a bit so that there's time to get a second opinion (Dana Farber since we're in MA) after colonoscopy, bone scan, X-Ray and blood test results are in. So far only the blood test has been done since the consultation. 

Since my husband doesn't even have a colonoscopy date and the bone scan would come right before first hormone shot, he decided not to start Casodex at this time. He is postponing the first hormone shot to the first of the year. This buys some time to travel to Farber with all results.

Since my husband did have soft tissue blockage near his appendix less than a year ago, having colonoscopy results is critical in having the Farber consultation. I discovered some info about prostate/colon cancer connection.  http://www.nyhq.org/diw/Content.asp?PageID=DIW010108



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He's probably going to see his pacemaker cardiologist as well about effects of hormone blocking drugs on his heart. Bone density? testosterone levels? So, yes, a lot to schedule. 

I thank everyone on this thread for the help so far. I'll keep checking in. I may start a VA/Agent Orange thread elsewhere on the boards to learn about the ropes. Our Medicare Advantage policy and urology practice are private but they deal with the VA, which fills scripts and/or sends people over to the practice. That can lower the co-pay by a lot. I need to find out how to set this up for my husband. Thanks all.

 

 

tarhoosier
Posts: 195
Joined: Aug 2006

I am less concerned about the doctor than VdaG. Diagnosis by phone is the standard since it is the result of the biopsy. I was G9 and 11 of 12+ and heard by phone. It gave me some time to prepare for the meeting at the office.

The G9, 100% of samples positive, means that the cancer has escaped the gland. No doubt. Considering the age of the man, his medical history and conditions, some type of hormone therapy (HT) and radiation is a given as treatment. Surgery is absolutely the wrong way. Unless there is a solid reason to delay HT, then now rather than later, even two months later should be the choice. Further waiting will not change the current diagnosis or pathology. I cannot see any second medical opinion changing what I have described here unless it is the overall length of HT or the type of radiation. This means the second opinion can take place after the initiation of HT now or quite soon. HT is inevitable, given these diagnosis figures. Waiting invites risk and enables denial.

The better news is that with the best treatment this man has a good chance of dying of some other condition.

Elsie189
Posts: 13
Joined: Nov 2014

Anyone out there get a bladder biopsy? My husband's urologist scheduled it because he wasn't happy with the CT scan.

I appreciate your response Tar Hoosier as well as the thoughtful others, especially V. de Gama. The two-part delivery of the urologist's diagnosis didn't bother us too much. It gave us a couple days to do research and get good advice from people on this board. Still, last week was overwhelming. One week my husband was out running four miles a day five days a week, took nothing but a baby aspirin, and now he's got aggressive prostate cancer and everything that goes with it. So you all know what this is like. (I am mindful that his two abdominal surgeries and the pacemaker belie my husband's still healthy appearance. The bad stuff is on the inside right now, not outside.)

No, there won't be surgery. My husband had the bone scan this AM, starts the Casodex today, meets with a radiology oncologist on Thursday, will have a bladder biopsy in two weeks, and get the hormone shot in two weeks. He sees his internist to pull this together in a week, if not sooner. He still wants a second opinion, so we may be headed to Dana Farber soon. It's more to make sure our local docs are doing the right things. We also want to know how my husband's two abdominal surgeries may impact radiation or vice versa. Onward! 

 

VascodaGama's picture
VascodaGama
Posts: 3121
Joined: Nov 2010

I think it better you prepare again a List of Questions for the next meeting at the biopsy. You should ask details about the CT scan. What abnormalities did the doctor find and where were they located (inside the bladder or in the outer walls). You can secure again a copy of the film and keep it in his file. I hope that the bone scan is negative, but it is hard to believe in the results of those exams for their limited detection. PET scan is better and possible in pacemaker patients. I am not sure about the use of specific contrast agents, such as the C11 choline.

The typical biopsy procedure is simple and done under localized anaesthesia. With the cystoscopy they will pinch a small piece of tissue so that your husband will have some discomfort for two days until it heals, but you need not to be worried. You may be allowed to watch the images on the screen, if you request for such. It may relief your anxiety.

Regarding your scheduling, I think it better you get the second opinion at Dana Farber the soonest. Also try having a testosterone test done now (at a local laboratory) before the agonist shot. This test uses a blood sample and costs a mere $30 and it will be of great help in future comparisons.
In all meetings you should comment always of his other health interventions, the coronary problems and the pacemaker issue. I wonder about the bone density scan (DEXA). It can be done now at the same place of the bone scan When meeting the radiologist you should discuss about the issue of ulcerative colitis. Does he recommend a colonoscopy?

Tarhoosier above recommends the hormonal therapy as the most probable choice to treat your husband. It may be, however, HT (Androgen Deprivation Therapy) is not to every patient, in particular those with congestive heart failures or prior heart attacks, who are 3.3-times at increased risk of death from heart problems, when on ADT. I think you should discuss the matter with specialists for peace of mind. Please note that I am only suggesting lay opinions based on my experiences with the disease and researches done along my 14 years of survivorship.

Best wishes in the continuing diagnoses. You are doing it well in being active with the tests and exams while gathering more details. Casodex will not influence the “route” you take.

 

Best,

VG

 

Elsie189
Posts: 13
Joined: Nov 2014

Thanks, Vasco. 

I wanted to let you know we're in waiting mode right now for blood test and bone scan test results. Up next will be EKG, bladder biopsy, colonoscopy. My husband is juggling his schedule. The second opinion will not be from Dana Farber but Mass General instead for various reasons too busy to go into. However, we need test results before that can happen. In any case, my husband has decided to commence with hormone treatment and is on Casodex right now. He's never had a heart attack or angina but slow heartbeat, which is why he has a pacemaker. The EKG will give a fuller picture. 

 

I'll check back in when we have more intel.

VascodaGama's picture
VascodaGama
Posts: 3121
Joined: Nov 2010

General Mass Cancer Center is among the best. I hope you get an appointment with a radiation oncologist and medical oncologist. This hospital has been in advanced trials for PCa with many qualified researchers. Your husband may benefit in future from becoming one of their registered patients. I have been following developments in their trial of a newer antiandrogen that seems to “bit” all the others in the “market”, in terms of outcomes and lesser side effects. (http://www.ncbi.nlm.nih.gov/pubmed/22266222)

Well done. You are taking the right steps.

Wishing you luck.

VGama

Elsie189
Posts: 13
Joined: Nov 2014

Hi, all.

--I just wanted to let you know that after a second round of X-rays to more closely examine some spots on the recent bone scan, the spots were determined to be old injuries. So that was a relief.

--We're back to trying to schedule Dana Farber again since my husband's urologist is already in the Mass General system and following their protocols. For a true second opinion, my husband wants to go outside that loop.

--Having said that, he's already on the hormone treatment and got the first shot of Zoladex--a 3-month one--a few days ago after a few weeks of Casodex. No side effects so far.

--He got an EKG--everything is good in that department. His pacemaker is for electrical problems, but there are no blockages. He has great low blood pressure, and great numbers for cholesterol, LDL, etc. Yeah, so too bad HE HAS AGGRESSIVE PROSTATE CANCER!!!! 

--the somewhat nerve-wracking bladder biopsy is next Wednesday with a follow-up consult on that a week later. 

--He's got a colonoscopy scheduled for first week in January after we return from a long visit south with family. He met with the GI doc who studied his surgery reports.

--We've met with the radiation oncologist (also in the Mass General system but out our way) who is working up the game plan, which will be discussed and scheduled for mid-January. That was a big day--five hours, plus that doc requested the extra bone-X-rays. 

So that's where things stand--or not stand since we've gone to more doctors and for more tests than our entire lives. Thanks so much.

shirley40
Posts: 1
Joined: Jan 2015

My husband had an aggressive prostate cancer diagnosis (Gleason 9) in March, 2013.  He received anti-testosterone injections every 3 to 6 months (Lupron was used).  We thought that would take care of the cancer.  All the urologists we talked to said not to worry because the Lupron will take care of it. This is an exact quote from one of the urologists: You will die with this cancer rather than from it.  We were never warned about the fact that a Gleason 9 meant that we should be more aggressive in using other therapies along with Lupron. 

A few months ago, my husband again had problems urinating and his urologist thought there might be some adhesions left over from the first surgery.  A routine urinary tract clean-out was scheduled that would last about 30 minutes.  Well!  Instead, the procedure took an hour and a half because a large tumor had grown out of the prostate into the bladder and covered the trigone area at the base of the bladder.  His tumor actually grew on Lupron.  The urologist removed as much of the tumor as he could and told me the shocking news immediately after the surgery. 

We went to a medical oncologist who first wanted a PET scan to see where else the cancer might be.  We were relieved to find that the cancer was contained in the bladder and had not metastasized to lymph nodes.  One small spot in one of the femurs may also be cancer.  We also scheduled radiation therapy and had the preliminary CT scans done to make precise measurements of the lower pelvic area.  In the meantime, we started what the oncologist said would be a mild chemotherapy (Taxotere).  The first chemo treatment was tolerated well, but the second treatment was an absolute disaster!  My husband was greatly fatigued, had no appetite, and became very weak.

The beginning of this week, we were going for a third chemo session when my husband collapsed as he got into the cancer center.  To make a long story short, he is fighting for his life right now in an intensive care unit.  The intestinal tract was severely affected by the chemo treatments and he now has a large duodenal ulcer that has penetrated into the outer muscular layers of the intestinal wall.  An endoscopist was able to stop the bleeding and acturally saved his life--at least for the time being.  I am sure the chemo did not cause the ulcer, but it certainly made it life-threatening.  The bone marrow has been severely affected, and up to this date he has received 3 units of whole blood to boost his red blood cells and white blood cells.  In addition, he has gotten white blood cell injections.  Essentially, he is not yet able to make enough blood cells to keep himself healthy.

My advice is that anytime you get a Gleason 9 score, treat it aggressively from the start.  This cancer is not the prostate cancer that you will die with.  It can kill you!

adrianpoll
Posts: 2
Joined: Jan 2015

 

Elsie, I do hope you and your husband are doing well. I am writing because at the beginning of my cancer, my symptoms and situation were very much like your husband’s – Gleason 9 at the time it was first diagnosed by TURBT/biopsy. That was back in May 2012 so I thought it might be helpful if I shared my 3-year story and some of the key things I have learned.

First is the truism that each cancer is unique and different (despite the similarities). Right on!

My first year, 2012, felt like a turmoil of adjusting and learning, it felt like this cancer had taken over my life. My urologist put me on Firmagon as soon as the aggressive cancer was diagnosed. This was to “hold the fort” while we considered what to do next. I got the Walsh book and read all about my situation (I am a scientist and an information freak. You can’t imagine all the stuff I was studying on the internet!). I traveled 2 hours with my sons to Johns Hopkins for a consultation with Dr. Han. He was very practical and to-the-point: first he said that we should assume that it was endemic, and second he said that since it had invaded my bladder, surgery wasn’t a good idea so I should look for a radiation oncologist. On return I did a thorough internet search of all the local facilities and the biographies of all their doctors, picked my man and got lined up for a good solid course of radiation treatment to the prostate and first-tier lymph nodes at the end of 2012. Meanwhile, in  2012 I also had two great overseas trips.

After that, 2013 was like a rest cure! I got on with my life and we watched the PSA which went down and stayed down. But just in case, I signed up with a doctor at my state’s cancer institute (a top-notch comprehensive care place) that my radiation oncologist had told me about. This research clinical oncologist spent a full hour talking through about my case and answering all my technical questions, which much impressed me – I might need him one day.

Sure enough, in the spring of 2014 the PSA started coming up again. The doctors had been right to warn me - it was a very aggressive cancer. Bone scan showed a solitary metastasis in the knee (rather unusual). We all wondered what to do about this for a few months. Fortunately, by now I was already participating in a clinical trial at the cancer institute, so I was getting bone scans rather frequently. The most recent of these showed the cancer progressing down my tibia at a rate that sure got my attention. My urologist quickly took me off the Firmagon and put me on Lupron instead, and I am just now starting a course of radiation on the knee and tibia. Meanwhile I am still working, and in a few days am traveling to England, on a business project and also to visit with family members there.

I am so lucky to have such a really great team of doctors, accumulated in these three years, and all helping with this case in their different ways – urologist, radiation oncologist, clinical oncologist, general physician and psychiatrist. They usually agree with one another but by no means 100% of the time. This is not a problem, it’s only natural and it gives me an opportunity to try to figure out why and what to do about it. With a team like this, one or other of them will usually give me the clue I need to clear my mind at any given time.  I feel like I’ve been a good patient who has built good working relationships with them all as well as with the numerous technicians, nurses and other staff I’ve run across. I read the magazines in the clinics, too, and find lots of good ideas there about the attitudes that work and the examples we can follow.

The other way I’m lucky, as you may have figured, is that since I’m still working (at 71) I am able to afford the top level of insurance through my company’s benefit package. If you are able to get  and/or keep this kind of good insurance, hang on to it for dear life!    

All the best to you all in your many different journeys.

 

Elsie189
Posts: 13
Joined: Nov 2014

I'm so sorry to hear about your husband's turn for the worse, Shirley. Thank you for your thoughtful, helpful response during what must be a horrible time. I wish the both of you a good outcome despite this turn for the worse. Thanks also to Adrianpoll for your own detailed account of your similar case. I'm so sorry you've got bone involvement and wish you the very best care to keep your cancer in check. This board has been one of our most helpful resources. 

Where we are now:

--We head to Dana Farber tomorrow to get a second opinion about my husband's case.

--He took the Casodex for a month then moved on to Zolodex for three months then will get six-month Lupron. My husband is tolerating the Zolodex reasonably well. He's more tired than usual from it.

--He takes Flomax due to urinary urgency. It works reasonably well, but he now needs to scope out all the bathrooms wherever we go. The guy was a camel before this!

--He will have 8-10 weeks of radiation starting in about three weeks. Some markers will be implanted ahead of that to target the radiation. 

--He had a bladder biopsy the day before Thanksgiving, which showed no cancer. However, one of the ureters was a bit twisted, so the urologist couldn't get up there for a complete look. My husband will have an ultrasound next week so they can get a better look. The bladder biopsy, btw, lasted over two hours--I forget the name of the procedure but it wasn't the snip, snip type like the initial prostate biopsy. My husband had to be catherized for five days at home, something that wasn't mentioned ahead of the procedure! We've now had a discussion about how poorly prepared we were for this surgery--not even a handout. It completely derailed our Thanksgiving and delayed a big family trip in December by over a week. The office is poorly managed, but the doctors have very good reputations all the same. We don't have a lot of options in our area; everybody's in the same group. We're not taking anything for granted going forward. For what it's worth, they're part of the Mass General orbit and follow those protocols.

--My husband will have the overdue colonoscopy in three days. (He had an appendectomy and blockage surgery almost exactly a year ago--no cancer seen. All the same, I do have a worry because of the timing that the two events might be related.)

So after a three-week respite visiting family, we're back on the prostate roller coaster. The aforementioned plans may change depending on what Dana Farber (Dr. Kaplan) advises. We are far more informed now than we were just six weeks ago when I first posted. 

Thank you all again for sharing your stories. 

 

 

VascodaGama's picture
VascodaGama
Posts: 3121
Joined: Nov 2010

Elsie

I am glad for the news about the outcome of bladder's negative biopsy. The timing close was not the best but you managed and that is good. Probably he had to be catherized because they took tissue samples from the sphinter area (closer to the prostate). I hope your husband manages to control urination.

The above story of Adrian is a good example to follow. Being active, educated, "moving" coordenately and looking for the best along one's journey.

Best wishes in his next consultation.

VG

 

Elsie189
Posts: 13
Joined: Nov 2014

My husband and I met today with a prostate cancer expert at Dana Farber to get a second opinion even though my husband's hormone treatment in our local area is already underway. His radiation is to begin in a few weeks. The takeaways from today:

--The doctor said my husband's proposed treatments (not at Dana Farber) of two-years of hormone treatment, currently Zoladex for three months followed by six-month segments of Lupron, plus radiation, is standard. Dana Farber has some experimental studies underway, but nothing new yet that has proven to be better than the current standard.

--She did say the latest research shows that 18 months of hormone treatment plus radiation seem to have similar results to three-year hormone treatment.

--The doctor said Dana Farber pairs Casodex with Lupron throughout the treatment, so we will ask my husband's urologist to adopt that. My husband has had almost two months of Casodex, but I don't think it was to be continued with the Zoladex and future Lupron.

--The doctor recommended that the Lupron be given in three-month shots, not six months--sorry, not sure why.

--I asked whether my husband's presenting with low PSA but sudden blood in urine and urinary irregularities and his eventual  high Gleason 9 had any significance. The doctor said that was a current million-dollar question in research. There is some early evidence that some high Gleason scorers with low-PSA producing tumors do not have as much success on hormone treatment as men who get diagnosed via high PSA levels. This was not great news since my husband falls into the low-PSA/high Gleason (9) camp. The doctor said he will need to be vigilant with bone scans, CT scans annually. Unfortunately, due to his pacemaker, my husband can't have an MRI. So that's not a great situation to be in either. I found some highly technical research on this as soon as we got home, but I can't process it right now because I have a dinner date with the patient!

--The doctor highly recommended the Prostate Cancer Foundation as a source for solid, up-to-date information. 

There was a lot to absorb. Tomorrow my husband begins his colonoscopy prep for his Wednesday procedure. Let's hope there's nothing significant there so I don't have to post on a colon cancer board as well! He'll have tracking seeds implanted in a couple weeks ahead of radiation treaments as well as a bladder ultrasound for images the urologist couldn't get during the big biadder biopsy in November. So, it's always something! 

Thanks, as always, for the incredibly helpful commentors on this board. I wish none of us had to be here!

 

 

adrianpoll
Posts: 2
Joined: Jan 2015

All the best for your husband's radiation treatment, Elsie! Mine certainly had a big positive effect, and I had it in conjunction with hormonal therapy just like him. Those little gold seeds make you feel quite special Smile and the treatment itself is not too unpleasant, you just have to lie still. Looking back at it I would certainly not have wanted to have been on hormonal therapy alone. The way it comes down to me, radiation has the effect of destroying the cancer cells (by upsetting them during their critical process of division and multiplication) whereas the hormonal therapy only makes life harder for them. A long time after my radiation treatment was done, I asked my R.O. what the prostate would actually look like at that time and he said, basically scar tissue.

The only side effect I had from radiation to my prostate, that I was not prepared for, was rectal bleeding, starting a full year after the RT was finished. Apparently that is not uncommon. After limited success treating it with hydrocortisone suppositories, I happened to be visiting my enterologist for routine colonoscopy and he prescribed Canasa - a much more expensive suppository, but it cleared it up impressively quickly.

I can absolutely relate to the annoyance and misery caused by frequency and urgency from blocked urinary passages. It seems like the whole nervous system is messed up, thrown out of whack in that functional area. I sure remember hunting anxiously for the men's rooms in the department stores and once upon a time, in the parking lot (after dark, fortunately) . . . well I'll leave that one to your imagination! That was early on, six months before the start of my RT - (different from your man's sequence, and nothing right or wrong about that, more than one path through the forest). In my case, my urologist worked a miracle when he did his biopsy (using the famous TURBT procedure) - he managed to remove just the right amount of tissue in the right places, bringing my urinary function to where  although not totally normal, I'm not bothered by it any more. Great surgery, getting it just right like that, I owe that man my life. I am wondering whether in your husband's case, the radiation treatment might shrink the prostate and that might take care of his urgency problems. That would be an excellent outcome, I do hope it may work out like that.

All the best again,

Adrian

VascodaGama's picture
VascodaGama
Posts: 3121
Joined: Nov 2010

Elsie

Thanks for the report on the consultation. I believe you got also answers on the other worrying issues so that you and your husband got the comfort and peace of mind so deserved. I wonder; ……..was it a dancing dinner?

A note on the combo treatment (HT + RT) is that through trials it has been shown that the combo provided 35% (higher) improvement in the outcomes against a radiation treatment done solo. This improvement seems to be more associated with the initial length of the neoadjuvant hormonal portion (HT before starting radiation), than the adjuvant length of HT. A neoadjuvant period of two to three months has shown better results.

The hormonal manipulations before RT make cells to be more receptive to the radiation “attack” (which is the one providing the killing). The adjuvant period in HT provides a continuous toxic environment for the “dizzy” prostatic cells, prohibiting these from an easy recovery (repair of the DNA). This seems to be the reason why one should not take beneficial antioxidants or supplements during and post RT period to maintain the toxicity.
The length of adjuvant HT is controversial, but most of the physicians agree that two years is too long and unnecessary. My lay opinion is that one year is enough if we consider the period of cell’s life cycle. In fact your husband can choose to stop earlier (after consulting his doctor), if he feels it difficult to withstand the hormonal side effects. Have a look at this link;

http://www.pcf.org/site/c.leJRIROrEpH/b.9071929/k.D61A/PCF_researchers_discover_molecular_

crosstalk_that_prostate_cancer_cells_use_to_survive_radiation_therapy_plan_steps_to_halt_that_

8220conversation8221.htm

The final goal is “cure” and we will confirm it when the PSA becomes stable. This is verified through tests done after the end of the effect of the hormonal treatment, which starts from about three months added to the period in HT. This means that the “masked” PSA during the long period under treatment cannot be used as a final judgement but it will be used to verify the progress.
In any case, it will be also necessary to check the effect of the LHRH agonist (Zoladex, Lupron, etc), which can only be done via Testosterone tests to confirm castration. I hope your husband gets one done NOW before taking the shot, and it continues with 6 month periodicals along the treatment.

Regarding the continuous blockade with Casodex plus Lupron, (single or double), it pertains to the experience of each oncologist. Some guys prefer to maintain Gleason 9 patients under constant double or triple blockade and some prefer mono with a LHRH agonist alone. It is not proved yet which choice is better. However, in the double blockade, the status of “castrate resistant” must be identified the soonest because cancer is known to feed on the antiandrogen Casodex (not on Lupron as commented by Shirley40 above), and this should be withdrawn at first sign. When the PSA rises in a low Testosterone environment it means that the cancer becomes “castrate resistant“. The cause is usually attributed to AR mutations. You can research details in the net if interested;
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2699836/

Gleason pattern 5 is for poorly differentiated type of cells that have lost many particulars of normal cells. They lost the ability of producing normal quantities of PSA serum and they have a faster life cycle. This makes them prune to respond faster to a radiation treatment, and this makes sense in trying to “attack” cancer, in this cohort of patients, aggressively from all fronts (combination therapies that may include chemo in the mixture), from the beginning. Though we are different and each cancer is unique, what works in some may not do so well in others. A newer DNA test provides better clues for one to make decisions on the treatment and on the times of its efficacy;

http://www.pcf.org/site/c.leJRIROrEpH/b.9204781/k.6E08/DNA_Blood_Test_Might_Identify_

Status_of_Prostate_Cancer.htm

Gleason 9 patients should be careful regarding osteoporosis. PCa loves weak bone. Many oncologists include in their protocol bisphosphonates, should the patient have existing critical osteopenia.

Fingers crossed for the results from the colonoscopy.

 

Best wishes,

 

VGama

A Note to Adrian;

Your posts are positive and inspiring to all of us. Welcome to the forum. Thanks for sharing your experience.

 

Elsie189
Posts: 13
Joined: Nov 2014

I'm blown away by both your detailed responses to my posting about the Dana Farber visit. I'll need some time to absorb all the information, especially yours VdeG because I want to read up on all the links especially the Casodex info, which I don't totally understand. 

I'll see if I can work on my man to do those testosterone measurements though he's already on the hormone treatment. He had so many procedures and appointments, he didn't get around to that or the bone density scan. Onward with many thanks, Adrian and V. 

VascodaGama's picture
VascodaGama
Posts: 3121
Joined: Nov 2010

Elsie

I am sorry if by any means my post created any confusion in regards to the Casodex. I did not want to be too technical but I think it good for you to understand details of the treatment. By knowing such and the function of the drugs, you will become less anxious. I would suggest your man to get involved in the matter and also subscribe to this or other PCa forum. He will like to talk and discuss with others in the same boat.

In fact hormonal treatments are simply done with the purposes of blocking all paths of circulating androgens (testosterone in males) so that these do not reach neither are absorbed by the cancerous cells, which feed and survive on the stuff. These drugs do not address directly the cancer but it work well in a palliative way, during long periods of time.
Traditionally, the androgen deprivation therapy – ADT (HT) is done by turning down (blocking) the factory of testosterone (the testes) using a LHRH agonist (ex; Lupron). This drug causes castration (low levels of T circulating in the body). A second blockade is done with an antiandrogen (ex; Casodex). This works at the cells’ receptors, blocking the androgen receptors (AR) therefore avoiding these from “absorbing” circulating androgens. Still other blockades are performed but they are not typically done at the initial stage of the treatment. They are used later (as second-line HT) when the traditional failed.

Zoladex and Lupron work at the pituitary causing in some guys blurred vision and recognition impairment. The castration status leads to menopause like symptoms being fatigue and depression the worse. But it also may cause fast or irregular heartbeat, which is worrisome in guys with heart problems.

Casodex stuck in the cell’s receptors. It manages to do this because it is made of a similar bio-structure as the real androgen. In other words, it mimics a real androgen “faking” the cell that will try to absorb it. This action on cell’s AR is thought to be the reason that provides a better stimulus during radiation.
Casodex manages to act like that for very long periods in the treatment; however, at some time in some guys, these receptors mutate and start feeding on the Casodex itself, which must be withdrawn.

The worse side effects from Casodex are breathless symptoms, breast increases and tenderness, and loss of sex drive. There is no particular worry about taking Casodex. The castrate resistance or refractory status typically occurs after many months into the treatment. One must be vigilant with the periodical blood tests and at the first notice should think in trying to stop taking the antiandrogen. The reaction is instantaneous. This is a phenomenon named Anti-Androgen Withdrawal Response (AAWR). There are many links in the net providing detailed information on the matter.

Here are some you may be interested in reading;
http://prostate-cancer.org/aawr-the-anti-androgen-withdrawal-response/

https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&sqi=2&ved=0CDw
QFjAD&url=https%3A%2F%2Fwww.urmc.rochester.edu%2Fgeorge-whipple-lab%2Fdocume
nts%2F23-JCB-04-Miyamoto.pdf&ei=GBmtVNu3GoHbUviRhKgJ&usg=AFQjCNHs5xv8QZx5MFWYj66RP
vekp
HrcmA&bvm=bv.83134100,d.d24&cad=rjt

About the side effects;
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Hormon
altherapies/Individualhormonaltherapies/Bicalutamide.aspx

http://www.medicinenet.com/leuprolide-injection/page2.htm

 

The testosterone test should be done before the Zoladex shot and controlled thereafter with periodicals like the PSA. Dexa scan can be done at anytime.

You are wonderful to care so much for him. Kiss

Sincerely,

VG  Embarassed

 

Elsie189
Posts: 13
Joined: Nov 2014

Dear Vasco.

I wonder if you would mind revising your last post, at least the parts about my husband not being more involved in his care. You know nothing about that. Nothing. We are a team, and I took charge of posting on this board with my own questions. He has done massive amounts of research elsewhere. Our printer is cranking out his research all day long. I am quite insulted by your comments, especially since I've trusted your information so much. Now I wouldn't dream of suggesting that he take a look at this site. 

We have been married for decades and tag team each other all the time. That is why we are still married. He has done triple the amount of research I have done while getting tested, examined, operated on, and much more. Your posting is inappropriate and upsetting. 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Dear Elsie,

I understand that you are upset due to the challenge that you and your husband are going through, however it is my opinion that you have overreacted to VG's post. I feel that VG has gone beyond the call of duty to help you and your husband. In my opinion, and most who visit this forum he is a hero. 

Based on the information that VG had available, he noted that you are the one who is posting....generally it is best that the patient posts and gets involved. He had no way of knowing what or what not your husband is doing or not doing. He was trying to be helpful to you. 

As an observer, your post comes off to me as aggressive.

I wish you well, and hope that you will reconsider what you posted to VG, who really helped you a lot.

 

Old Salt
Posts: 720
Joined: Aug 2014

I have to agree with hopeful. There was no evidence in your posts that your husband was involved in developing treatment strategies. Good for him though, and now, let's get back to the topic of this thread.

VascodaGama's picture
VascodaGama
Posts: 3121
Joined: Nov 2010

Elsie

I am sorry if I’ve infringed your feelings. I am not a native English speaker and quite often I struggle in finding words to give meaning to my sentences. I look hard for assertiveness when posting. This time I stepped on your toes.

In any case it is good to know that your man is following our exchanged views on his case. Please note that here we are just a bunch of friends sharing the same problem and trying to help each other. We are not doctors but laymen informing about our experiences and accumulated findings while confronting the disease.

You can flag my posts or request the administration to delete them.

VG

Josephg
Posts: 194
Joined: Jan 2013

When I read 'Elsie's' posted reply to Vasco, I wanted to fire off an immediate response in support of 'Vasco', but I took 10 long breaths, and I still was not emotionally stable enough to do so. So, I logged off, deciding to wait a few days.  This was a wise decision on my part, in my opinion.

'Hopeful' replied in a non-emotional, logical and exemplary manner, much better than I could have ever done so, myself.  Thank you, 'Hopeful'.

'Vasco', you are a hero to all of us here on this Forum, a fantastic source of information and guidance, as well as a fantastic source of inspiration to us all.  For my sake, 'Vasco', please continue to be as candid, straight forward, and honest as you have always been with us on this Forum, as it represents a very necessary part of the tremendous value that you provide to all of us.

Cancer causes a tremendous amount of emotion and stress in those folks who are diagnosed with it, as well as for all of the people who know, love and share life experiences with the cancer patient.  We all live with this stress and emotion each and every day in our lives after being diagnosed with cancer, with some days being better or worse than others.  This stress and emotion lies close to the surface of our psychological being, similar to a dormant volcano.  Occasionally, those emotions erupt out of us, and we temporarily lose a part of our self-control, and we may say or do things that we later regret. On those unfortunate occasions, we need to acknowledge that we lost our self control, apologize to those on the receiving end of our outburst, and then get back on track, moving forward with our lives, and supporting the cancer patient (or ourselves, if we are the cancer patient).

Thank you 'Old Salt' for your closing comment, "Let's get back to the topic of this thread".

mrspjd
Posts: 694
Joined: Apr 2010

 

Hi Elsie,
 
In addition to a number of reputable PCa educational websites & co-ed face2face PCa support groups, (for example, google: UsToo, PCRI, PCF, etc.), there are some really excellent PCa social networking sites that have enlightened views re women posting about/for their husband/partner with PCa. One such site is:
http://www.healingwell.com/community/default.aspx?f=35
 
The HW PCa site provides great oversight by well informed, tactful & kind forum moderators, has a very user friendly topic search feature, and a diverse HW PCa forum membership comprised of men & women who offer a wide variety of different perspectives on almost every aspect of PCa. 
 
Wishing you and your husband all the best. 
 
mrs pjd
Wife of a PCa Survivor (Stage T3, locally advanced, high volume, high risk PCa)

 

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