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New to all this and scared

redhtz
Posts: 5
Joined: Apr 2017

It is hard to know where to even begin writing.  My husband hasn't been dx'd with prostate cancer yet but with the information we have I am very afraid the dx. is soon to come.  I will start with his history.

He is 56 yrs old.  Always been healthy and never went to a doctor for routine yearly exams or tests.  Months ago he started with urinary and erection/ejacutaion sx's and as they increased he decided to become established with a provider.  She drew numerous labs and DRE.  Prostate was enalrged and PSA 140.  He was referred to a uroligist and was seen by him today.  Uroligist was alarmed by the high PSA.  DRE was done and prostate is hard with no irritation.  Discussion of possible cancer. He also mentioned the possiblity of bone involvement due to a elevated Alkaline Phosphate.  Biopsy has been scheduled in 3 weeks.  He is also starting Flomax. 

My husband is in a state of shock hearing the "C" word.  What is ironic, I am a registered nurse but my specialty is Emergency Room medicine and knowledge of prostates is very limited. Now I am trying to learn as much as I can quickly. 

Any advice or suggestions are very appreciated.   

 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I am so sorry to hear about your husband's problem, and certainly your fear and apprehension are quite normal. But you will not really know much of anything until after the biopsy. Typically there are a few other side tests, but the results will be presented together, when you will get the whole package so to speak. Granted, his PSA is sky high... far beyond anything that could be caused by an infection or prostatitis or anything other than cancer. But everything comes down to the biopsy. We were all "new" to this at one point. We learn as we go along. I suspect it would be safe for you to begin researching advanced prostate cancer or perhaps locally advanced (stage 3).

Most insurance only initially pays for an ultrasound guided biopsy. These have a evry high rate of false negatives, meaning that often they fail to produce any sample of a tumor (which happened in my case). There will also be a bone scan, which is very important in your husband's case. This will give a general idea whether or not any cancer has spread to his bones, which is stage 4 metastatic cancer. Depending on the results of the biopsy and bone scan, there may be additional tests, such as a CT or PET scan or more likely an MRI, to identify the exact location and extent of the tumor.

There is considerable discussion about why the insurance companies do not start with the MRI, which is a non-invasive test and instead insist on poking needles into and thru the prostate, which has the potential to actually CAUSE it to spread. Your husband is on the young side to have advanced cancer. Typically it first appears on men in their sixties. I hope for your sake that his test results come back as something simple, but I fear that is unlikely. You will need to be very strong throughout this process, so be gentle and supportive. There will be some powerful emotions, especially if he ends up on long term hormone therapy or perhaps even chemo. Most treatments for prostate cancer revolve around surgery, several forms of radiation threatment, and as I said, androgen deprived hormone therapy. Chemo is generally a last resort.

Do lots of research, and become familiar with the terminology. Start with Googling the TNM staging scale. And good luck with what is to come.

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi,

I would get an MRI with contrast before the biopsy, that way the urologist will know where to take the biopsy samples.  Otherwise he is just shooting in the dark. The MRI will also give them a good look inside the prostate and surrounding real estate to look for any cancerous areas.

 

Dave 3+4

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Redhead,

I'm sorry for the situation that you and your husband are faced with.

ustoo is an international organization that sponsors local support groups. I suggest that you google them to find a support group near where you live for emotional support and knowledge.

Read books, internet. Keep on asking questions here. We are here for you.

Prostate cancer is NOT spead by biopsies. This is a wifes tale....I've had six of them so far (I am in an Active Surveillance program).

As a medical profession, I'm sure that you know that that you need to receive printouts of all tests to share with specialists, etc.

Please note that there is a T3 MRI that uses a 3.0 magnet; this is the the most powerful in ciinical use and provides definition that will show if there is extracapsular extention, that is if the cancer has escaped the prostate. There is also a a bone scan that is recommended for men with a Gleason 8 and above to see if the cancer has traveled to the bone.

You need to read about the Gleason scale so you will know what the doctor may talk about if cancer is found in the prostate.

I strongly recommend that your husband make an appointment for a colonoscopy before treatment, if necessary, since if he receives radiation, a colonoscopy may be more difficult. (I guess from your post that this has not happened, along with other routine tests, that also need to be done). If he is diagnosed with porstate cancer, a bone density test (as a benchmark may be considered). 

Best

H

 

 

 

redhtz
Posts: 5
Joined: Apr 2017

Thank you for the suggestions and advice.  The biopsy is scheduled in 3 weeks with 10 day wait for results window.  So we have some time to research. I will read all I can to learn as much as I can.  Luckily I am the google queen or so I am told. 

Regarding the biopsy.... I have read many differences of opinions regarding the pain/discomfort post procedure.   We have a vacation scheduled 3 days after procedure.  We were planning on driving 1800 miles in 2 1/2 days each way.  We already have read the do's and don'ts post pocedure but pothing is mentioned about lengthy time periods of sitting.  What do you think?  After your biopsies would you been able to tolerate sitting that long without being uncomfortable.  

Two weeks ago my husband was a man who thought he was healthy, took no medications except tylenol and is now taking 7 medications daily.  His labs showed early diabetes, high blood pressure, high cholestrol, early liver disease. Between changing diet, loosing weight, no alcohol, monitoring BP daily and then hearing the possiblity of cancer his life style has changed dramaticly within 2 weeks.  When I came home from the pharmacy with a 7 day plastic, am & pm, pill box he laughed, shoke his head and said " I have turned into my Mother" Humor always helps!  LOL

I will continue to ask questions and I am sure my husband will join this group soon.  Again thank you!

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

At this point, I'd say just wait. 

It's too early to tell what you need to read and do research on without a specific diagnosis.  This is especially so since your husband has seemed to developed so many other problems at the same time.   On top of that you don't even know if your husband has prostate cancer yet or not. 

Doing research on available treatments would be a waste of time and cause unncessary worry without knowing exactly whether your husband has prostate cancer or not, how aggressive the cancer is and how extensive it has become.  

You really can't plan to do anything until you know these things.

So, while it will be difficult, try to relax.  Do things to take your and your husband's mind off the problem until you get the biopsy results.  THEN you'll have the information you need to target your research and to make the hard choices that will ultimately follow.

Good luck!

BTW, also try not to worry about the biospy.  Many men go through it painlessly and without any notable difficulties.  That's the way it was for me.  Doesn't mean that it will be the same for your husband but worrying about it will not help.  There really is no other choice.  Just make sure that he takes the Cipro he's given to take before and after the procedure.  Infection is really the greatest risk because the samples are taken transrectally.

 

redhtz
Posts: 5
Joined: Apr 2017

Good to hear about your biopsy experience.  Yes he will be taking his Cipro.

I will continue to read and research, it is just my nature.  Hopefully the time spent will be a waste of time. Laughing

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Do as you please.

All of us could provide you with info that could easily overwhelm you if we did not limit it to the info that you and your husband will actually need after diagnosis.

If you want to read my long "introduction" to prostate cancer treatment for men diagnosed w/a low grade Gleason 6/7 cancer, you can find it in my Feb 10, 2017 post in this thread: http://csn.cancer.org/node/307947

I won't bother reposting it here (as I have frequently elsewhere on this forum) because I do not know if it actually pertains to your husband's treatment needs or not, but it will give you an overview of the basic choices available to men for whom such treatments would be appropriate.

 

 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

After the biopsy, there can be blood in the urine for a few days and blood in semen for a few weeks.

The day of the biopsy, I rest afterward and may use some tylenol. I feel physically fine the next day.  There may be a variance in discomfort by patients after the biopsy.

I live in the So. CA. area, get the biopsy 35 miles from my residence and am driven back (although, sometimes I am the driver) via the freeway where I have to sit in the car for two to three hours, and am very uncomfortable in my seat as the injection to desensitive the prostate wears off,  However two days later would be no problem; in fact one year, a day after the biopsy,  I had to fly  across the country (which was pushing it)

"Mother Redhead" You know who has to be in charge now!!

As far as diet most of us have changed diets after being diagnosed. Basically it is recommended to eat "heart healthy" . Heart healthy is prostate healthy. In fact, heart disease is epidemic and we are more likely to die from heart disease than prostate cancer. Those who have been diagnosed with prostate cancer are less likely to have heart disease because of life style changes.

Dairy and red meat is determental for prostate cancer. I for one now eat a veggie diet with some fish. Others who post here follow a mediterranean diet. There is a dvd that you may wish to view FORKSoverKNIVES, or if you wish a book, The China Study by T. Colin Campbell. Also consider reading the book Eat to Live by Joel Furman, MD. Additionally UCSF had published a complete listing of healthy eating, that SSW first posted at the forum,  however I was not able to locate it right now. Hopefully SSW will share this. However here is a post from UCSF that may be useful...   https://www.ucsfhealth.org/education/heart-healthy_diets/

Best,

H

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Here's the link, Hopeful:  http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

redhtz
Posts: 5
Joined: Apr 2017

"Mother Redhead" You know who has to be in charge now!!  

I do like your comment!  I am a redhead and I love being in charge! and sometimes I am a little bossy!  30 yrs as a nurse and almost all of those years a charge nurse in a ED.  I have and will go to my husbands doctors appointments and any treatment or procedure.  I am his eyes, ears and spokesperson since I am able to speak the doctors language.  He introduces me to his doctor as his wife and personal nurse.   

Clevelandguy
Posts: 441
Joined: Jun 2015

Hi,

When I had my biopsy I has some discomfort but not alot.  I had just a little blood in my urine for a few days aftwards.  Three days of constant improvement might make it OK to do the 1800 miles(use a seat cushion).  Probably also depends on what type of vehicle, plush ride or bumpy four wheel drive? On the rare acception there could be an infection(temp spike).  Could you delay the vacation for a couple of weeks just to be on the safe side?

Dave  3+4

Grinder
Posts: 438
Joined: Mar 2017

Just my opinion... Cleve guy right about safe side delay. After my biopsy blood clotted in urine and because of my BPH stopped what little stream there was. Next day after I had to get another Foley catheter put in. That would make travel a disaster. I would at least have the option of postponing the trip until you are sure the biopsy doesn't have a side effect. Blood in urine tends to be common after biopsy, and there is always the chance it could clot. Normally a clot passes with a normal sized prostate, but with enlarged prostate the clot, or in my case clots, can jam up the already constricted size of urethra. Flomax probably won't get it open enough to pass clots. And if he is on Flomax, chances are his prostate is enlarged.

Not saying to cancel travel plans, but have alternative plan just in case after the biopsy... or postpone. Nothing worse than traveling long distance and have your urinary tract shut down in middle of nowhere.

redhtz
Posts: 5
Joined: Apr 2017

Yesterday we received the results of prostate biopsy. Docotor used the words: advanced and aggressive. 14 core samples, which include the Vesicles, all are positive.  Gleason Score 8 - 9.  Perineural invasion present. Extraprostatic extension identifed.  Ct and Bone scan are being scheduled soon.  Per doctor time is important.  Once scans are completed a treatment plan will be decided. He suggested we read a book Guide to Survivng Prostate Cancer. 

Randy feels like he has been hit in the gut!  My head is spinning!

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

I am sorry for the diagnosis. The situation seems to be pretty bad for the info you shared. The high PSA (140 ng/ml), positive DRE and high ALP adds to the biopsy results in the advanced status. Bone metastases are a probability which would turn your husband's case into systemic T4. However, he is asymptomatic (no pain) which could mean that cancer is still localized. The scans will provide a clue on the matter.

When a systemic patient is young (your case ?), some doctors recommend a series of combination therapies involving the debulking of the gland (RP), which is followed with Chemo plus an hormonal protocol. Radiation is also a possibility but it depends on the spread of the cancer. When systemic, some patients prefer just to have chemo and HT due to the risks involving RP (incontinence and ED). In any case, systemic treatments are considered palliative so that one should weigh the quality of life when deciding. Depending on the advanced status, palliative therapy can provide control during many years.  

Best wishes and luck in his /yours journey.

VGama

Old Salt
Posts: 720
Joined: Aug 2014

You need to get a radiation oncologist and a medical oncologist on your team right away. You can listen to what the urologist advises, but your husband's situation is unfortunately (!) beyond what urologists are supposed to treat.

It's likely though that androgen deprivation therapy (ADT; hormone therapy) will be in your husband's immediate future.  

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