New to board husband diagnosed at 47

So here is our story, 1 month ago my husbands psa blood work came back at 56. When I switched our family doctor 5 years ago we didn't realize that the new doctor wasn't including this in my husbands blood work. So here we are, biopsy positive for cancer, psa of 56, Gleason scores of 3 3+3, 1 4+3, and 2 3+4. Negative perineural. Cancer all in the right, nothing on the left side of prostate. 6 out of 12 cores positive for PCa. Our urologist has referred us to a very good surgeon. This is the second message board I've signed on to. I quit the first board when after I posted my husbands stats someone replied saying it was outrageous that they were willing to operate to remove the prostate and the surgery would fail. I guess I'm looking for hope, for some support from people who have gone through this and came out the other side with some quality of life. Our urologist is optimistic and so am I,that were going to fight this with all we've got....but everything I read talks about much older men. We have been blind sided.

Post Edited (Phila-wife) : 12/7/2012 7:41:10 PM (GMT-7)

Sounds like a familiar story to me. I was 44 with about a 20 PSA. That was six years ago. Doing well right now and the best advice is to keep a positive attitude going. This is a life changing diagnosis so I would also recommend learning as much as possible about the disease.

Your hubby can do well, but he will likely have some work to do. The best decisions are the educated ones.

I remember the early feelings. Again stay positive. Things can go quite well...

Tony

Welcome, this is the right board to be a member in. Sorry you had the need to find us and to be here, but you will get the proper support and guidence that you need.

Hoping the best for you and your husband. I was dx at 56, and my urologist said I was one of his youngest guys, so at 47, I can understand the feeling.

Being that your husband is a Gleason 7, surgery is a good option in attempting to eradicate the cancer.

Please keep us well posted

david in sc

Yes, PC awareness doesn't even have a tiny percentage in the media as does breast cancer, that is something we all talk about here and try to promote in our own way. I am certainly for all the "pink" you see every where, breast cancer is a terrible scourge upon women and too many are killed by it every year, but so is the "blue" for prostate cancer.

Tony here, posted above, is a very exprienced PC advocate in particular for our cause.

I spread the message, with every man that I get exposure to in a natural conversation, and to any one else that will listen. I am a big believer in PC awareness, PSA tests and screenings, despite the notion in the news that mabe it's not a good thing.

I feel its better to know, than to not know. While there is an argument for overtreating indolent cases of prostate cancer, burrying one's head in the sand and "not knowing" is not an acceptable option in my opinion.

If it were not for my PCP doing PSA tests on me every year since I hit 50, I would have never known I had a serious case of PC in my body. It was bad enough even when I was diagnosed, I can't even imagine where I would be now, 4 years later, if I had never been tested.

You are on the right track in your mind set for sure.

David in SC

You should ask your surgeon this: "What are the chances that this surgery will CURE your husband.." There are charts and tables that can predict this with fair accuracy..In my case, it was 50%. I did the surgery anyway. 50% is better than nothing....But my surgery DID fail and I quickly moved on to radiation. I could have skipped the surgery without any change in the final outcome....(the radiation failed too).. So don't rush into anything until you fully understand the percentages..Read Dr. Walsh's book to develop the background needed to make these decisions..The side-effects associated with these treatments are not something to be taken lightly...

I'm so sorry to hear your news and wish you and your husband all the best. I'm not sure ti what extent you're looking for support and to what extent your looking for other viewpoints. But you'll find both here.

I'm still in the (very) early stages of treatment and by no means do I have this all figured out. I'm also on the young side, although not as young as your husband (I was diagnosed at 51.) We're both in the "high risk" category...I have a high Gleason score, while your husband a very high PSA.

For my part, I felt I had to talk to several doctors before I had my head screwed on straight. In particular, I found an oncologist that specialized in prostate cancer and that provided some great perspective and the information that you said you felt was lacking in the medical community. To the extent that's possible for you, I'd urge you to do that even if it moves your calendar back a few weeks. The greater perspective you have, the better you'll feel, no matter what treatment course you pursue.

All the best to you and your husband. This is very beat-able!

Michael

Phila-wife said...
Too late though to have prevented this from happening.

Agreed.

You and your husband are in a similar situation as my husband and I are in a couple of ways.

He was diagnosed at 49, but in reality, he probably would have been diagnosed when he was 43 if the doctor had acted on or even revealed his abnormal PSA back then.

What it is not too late for, is educating yourselves as much as possible. Please don't rush into anything.

We too, had the "get it out" mentality. It's normal. Hearing the word "cancer" is a shocker and numbing.

Just makes sure that you try to eliminate as many "too late" incidences as possible.

Has your husband had any kind of imaging to help expand the diagnosis?

I know you will read things you don't want to read, but remember, HOPE comes in several types of treatments. One size does not fit all.

Wishing you both all of the best.

firstly,I'm very sorry to here of your diagnosis.I was 44 when I found out I had advanced desease.As the cancer had spread to different bones in my body my only available option was androgen deprevation treatment ( hormone treatment).The doctors said surgery and even radiation treatment was of no point as the cancer had metatasised.I've always believed that they should of removed the prostate anyway as this is the source of the cancer.It is my opinion that if there is tumour in your body then remove it !!!!.Your husband may have to endure radiation and hormone therapy too.My experience with hormone therapy was not pleasant and I have now opted to live my life out with no present medication at all.I chose this because I didn't like the person ht turned me into so made the decision to cease treatment.Presently I am glad of my own personal decision.If I had have had my own choice of treatment I would of opted for as follows..........robotic nerve sparing surgery,then some type of liquid radiation treatment (preferably alpharadin)...and maybe some maintenance with a mono therapy anti androgen such as cosadex.

Welcome to this Board and I too am sorry you are here. HW is a very welcoming Board to us wives. I too had a previous board experience that was pretty negative. Not so here! Very good support and information!

My husband was diagnosed when he just turned 50 ten years ago. It is a beast that is with you but I have to say that in the last 10 years there were times we did NOT think about it too much. Always present but we are not the cancer. This year has been pretty tough on him but we are very optimistic about things getting better in 2013.

When my husband was diagnosed there were NOT many options. Just the standards. NOW there are so many treatments being developed that as Zimac mentioned, we hope for the chronic disease!

Best thoughts to you and your husband. You have come to the right place and most of all take a deep breath. It is a blow but you can face it with the right informaton and knowledge.

http://www.health.harvard.edu/press_releases/prostate-cancer-treatment-decisions

Wise advise has been given thus far, know your options.

If Philawife is Philadelphia, shortly after being diagnosed, I visited the Penn State Proton center in Philadelphia.

Even though I had surgery, that was based on my variables, and percentages of risks willing to accept. 

It is wise to understand treatment options.  Taking into account age, health, PSA, biopsy, and risk/reward for each treatment choice.

In my opinion, the key notes here are PSA, and the biopsy results for the right side. 

Phila-Wife:

You have plenty of time to get more opinions, according to John Hopkins Urology - months, not weeks. CaP is very slow growing.  Please don't feel pressured into making a decision.  Please get as much info. as you can before jumping at a decision.  You and your husband will have to live with the consequences.  Jumping into a quick decision may make him feel better in the short term, but may have long term consequences.  You need to get as much info. as possible, before making YOUR decision.

I recommend that you talk to a radiation oncologist at a Cyberknife Center. There are two in the Philly area : PA Hospital, and Philly Cyberknife in Havertown. With a PSA of 56 ( sure it's not 5.6 ? ) , your husband may not qualify for CK, but the CK Doc.'s may tell you about other radiation alternatives.

Good luck.

My situation was nearly the same, age 60, PSA 59, 12/12 cores positive, and containing 3+3, 3+4, and 4+3. I had opinions from two urologists-surgeons and neither one would operate. They were positive that the cancer would not be contained and that I would also have to go through radiation. They wouild not subject me to the risks and side effects of surgery and radiation, when radiation alone would actually do a better job.

I consulted with two radiation oncologists to consider a combination of brachytherapy and external beam radiation (IMRT/IGRT). I decided on High Dose Rate brachytherapy rather than permanent seeds. I had two HDR procedures and 25 fractions of IMRT to the prostate, a 5-10 mm margin and the pelvic lymph nodes.

I also met with a medical oncologist that agreed with the urologist to start with ADT3 hormone therapy and to continue it for up to three years due to the very high risk the cancer presented. He also said no to surgery do to the high risk level. He showed me studies that indicated that radiation does better than surgery for higher risk patients.

All of the opinions and decisions took less than four weeks. I was diagnosed in early September 2010 and started Hormone therapy the first week of October. The radiation was administered throughout part of November and ended just before Christmas. I missed three days of work, two for the HDR procedures and one for a colonoscopy. I had no urinary or bowel problems and have remained completely continent. I am now two years from the treatment and my PSA continues to be undectable and I am doing well.

Please be guided by my experience and take suffecient time to properly study the situation. My urologist demanded that I have the multiple opinions or he wouldn't take me on as a patient. Based on that he is the most responsible doctor I know. You should not rush to surgery without knowing all about the other treatment methods. You have time to properly research and meet with a few other doctors and read some good reports comparing the methods. There is a great report on www.prostate-cancer.org that compare thousands of studies of surgery and radiation. It concurs that for high risk situations the comination of brachytherapy, IMRT, and Hormone therapy is more effective at cancer control and has less damage to the patient than surgery. I will find the link and post it for you.

In the meantime, here are two excellent websites explaining the two forms of brachytherapy. For permanent seeds see www.prostrcision.com, by Dr Frank Critz the pioneer of adjuvant (conmbination) seeds and IMRT; and www.cetmc.com, the website of Dr Jeffrey Demanes the pioneer of HDR brachytherapy and head of the UCLA Brachytherapy Department. You will learn a lot from these and will gain confidence that you can be effectively treated without the risks and side effects of surgery.

Please let me know how I can help as your husband's and my diagnoses are very similar.

Best wishes,

Jack

Phila-Wife

Here is the way to get great information and the report I just mentioned comparing the treatment methods.

Go the the Prostate Cancer Research Institute website www.prostate-cancer.org.   Then along the top you will see a tab for "Insights" the publication they publish.   Click on the "Insights" tab and scroll down to the issue from May 2011, volume 14, number 2.   Look for the report "Which PC Therapy Has the Best Long Term Control?" by Dr Peter Grimm one of the leding Prostate Cancer specialists.   PRCI is a very valuable website and Insights will give you great and practical information and guidance.

You are at the point where it will be easy to get overwhelmed so just relax and understand that haste can make waste.   You have several weeks to do adequate research without increasing your husband's risk.   Anyone, including doctiors, that tell you to get treatment quickly without suffecient research are to be avoided.   Anyone that tells yoou that a simple operation will be all that is needed is to be avoided.   Based on his high PSA, large tumor, and Gleason 7 your husband is high risk and needs to be treated as such and it is unlikely that only one treatmnent method will be successful.

Take your time, read the report, research, and ask your urologist for referrals to radiation oncologists and a medical oncologist.   If he doesn't help you find additional treatment options he wasn't the right doctor for you. 

Jack