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Newlyweds need answers in timely fashion for husband's radical prostatectomy

NewlywedMrsDoh's picture
NewlywedMrsDoh
Posts: 3
Joined: Jan 2013

Hello everyone,

My husband (52) and I were recently married in September and now are trying to understand the best treatment options for this most recent diagnosis. The information I found on this chat board has been helpful but a bit overwhelming, too, since it doesn't seem like we have a lot of time to work with. My husband's PSA was 14 as of a few weeks ago and after 12 biopsies, they found all but one section positive for cancer. His gleason score is 3 + 4 = 7 and so the doctors are suggesting surgery by robotic removal within 4 months. The doctor said that if he was his own brother he would not wait longer than this. We are in the Kaiser system, which I recently heard was a very good system, but I of course wish for my husband to have the best of the best. He is having a whole body bone scan this week, then a CT scan next week. I wonder, however, if a pelvic CT is included in this test as someone had suggested the benefit of this sort of exam. 

I'm a bit overwhelmed with all the information so please forgive me if some of my questions are random. For instance, the idea of multiple second opinions seems daunting. How can this be done? Does this mean that he will have to be biopsied again and again, or can he just send his results from Kaiser to other doctors. I would like him also to see any experts outside the Kaiser system and hoping there are a few in the Bay Area. Does anyone know any top urologists/surgeons? 

As for the suggested prostatectomy, it seems to make sense why the doctors are recommending this to be the best route. They say there is a better chance than radiation concerning the removal of all or most of the cancer since it's such a radical procedure. The Kaiser doctor we spoke with said that open surgery and the DaVinci method are fairly equivalent in the outcomes even in regard to nerve sparing. With the robotic removal, they will remove the seminal vesicles even though, at present, there is no indication of cancer present in the vesicles. 

His numbers look like this:

a. right apx, gleason 6...positive, 8 of 45 mm affected

b. right mid, gleason 7, positive 4 of 31 mm affected

c. right base, benign, negative

d. left apex , gleason 7 12 of 38 mm affected, positive (1/3)

e. left middle, gleason 7, 19 of 38 mm affected, positive (1/2)

f. left base, gleason 7, 3 of 48 affected, positive 

If anyone has any illuminating advice for me, especially in regard to excellent doctors in the area. I would be very grateful. I am very heartbroken over this diagnosis. We only just got married. 

Thank you, 

Michelle

 
starr15
Posts: 31
Joined: Oct 2011

Can you insist on a consult with a Kaiser radiation oncologist?  The consultants will not need to do more biopsies for any second opinions. Anyone can look at the path  slides. 

I am so sorry. it is very frightening. But the disease can definitely be cured.  As a man, i suspect that if you reassure  your husband you will be there for him when he needs you, he will really appreciate it, even if you assume he knows this already.

ralph.townsend1's picture
ralph.townsend1
Posts: 353
Joined: Feb 2012

I'm sorry for the condition that you both going to fight, But before you just cut him open and change y'all life. Get a Second a opinion from a specialist that in prostate cancer. Go to a major cancer center like MD Anderson.  If the Doctor thought it was cancer he would not wait until 4 month before he can schedule. I think you should get a second opinion????? I question doctor's and money!!!!!

 

Michelle, a trust God a little. If you don't have remove prostate at the age 52 is good!

hopeful and opt...
Posts: 1332
Joined: Apr 2009
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hopeful and opt...
Posts: 1332
Joined: Apr 2009

I am sorry that you have need to post here. We are here to help.

Kaiser does basic treatment and diagnostic tests. Some state of art tests are not done by Kaiser.

There is a MRI with a Tesla 3.0 magnet that major institutions have available to evaluate if the cancer has left the core. This test is will indicate if cancer is found outside the prostate, where the cancer is in the prostate , one core or two, etc. The bone scan and CT scan, since it is not able to find small cancers outside the prostate will not give you the information that you require, however the bone scan will give some indication if the cancer has spread to the bones,Kaiser does not offer  the MRI with a Tesla 3.0 at their facilities., In your husbands case where there is extensive cancer found that is has low moderate aggressiveness there is  risk that the cancer has left the capsule so localized treatment such as surgery  is not appropriate since you still might require other treatments such as hormone and some forms of radiation. You will be subject to possible side effects of surgery plus the side effects of other treatments. This risk is cummulative

You  need an independent  second opinion by a world class pathologist(outside of Kaiser) on your biopsy slides so that you are treated correctly. Determining a Gleason is subjective.

I just posted some information germaine to you in a recent thread....... http://csn.cancer.org/node/252414

There is an excellent hospital, a center of excellence in San Francisco, UCSF that you may wish to contact for diagnostic testing,

Consider attending a local support group and research research research

I wish you the best

 

VascodaGama's picture
VascodaGama
Posts: 1568
Joined: Nov 2010

Michelle

 

Welcome to the board.

I am sorry for what is happening to your newlywedMrDoh. His diagnosis indicates a high volume of cancer which is the cause of the high PSA. Gleason 7 is an intermediate classification for aggressivity and for the risks of latter recurrence (return of cancer at a later date).

Firstly be informed that prostate cancer do not spread overnight. It is a sort of “slow” growing cancer that gives us time enough to research and find the best way of fighting it.

The doctor’s comment you posted “… if he was his own brother he would not wait longer than this…” is senseless and sounds very commercial. In fact it is typical of urologists to recommend surgery and of radiologists to recommend radiotherapy. It is their business trade and the standards of their associations (AUS and ASTRO).

At beginning we all go through the same initial feelings of “darkness”. We easily became the prey of the sharks.

An educated patient is assured of the best choice for his case and your husband (and you) has a lot to lose if you embark on a therapy without knowing the consequences in advance. The risks and the side effects will influence your future life.

 

In prostate cancer Second Opinions on everything is a must do thing. You need to get assured that the diagnosis is correct and you will need the opinions from specialists of prostate cancer, in all fields of treatments. At the end of the “line” you are the ones affected by what is recommended and you will have to sign an agreement releasing the physician of any responsibility.

An important aspect of the treatments for prostate cancer is that you may lose the possibility of fathering a child. The quality of life for young patients (over 20 years of life expectancy) weighs a lot when considering a form of treatment. Some of the side effects become permanent and one must endure a worse status of living. Some young couples go further and get divorced.

 

Proper diagnosis leads you to choose a better treatments and good outcomes. To get second opinions on the diagnosis, it will start from getting the biopsy slides reread at a reliable laboratory. You can also verify if the laboratory used by your doctor is trustful.

Locating the cancer is needed to verify if it is contained or if it has already extended outside of the gland walls. Contained cases are more assured of a cure with a radical therapy; however, if spread is verified then surgery (open or robotic) would not do any good. Radiation treatments are proper for such cases.

A medical oncologist may be the best choice for a second opinion on a treatment, but you will need to get reliable results from tests.

 

I recommend you to read books on the problem. I also recommend you to prepare a list of questions to expose to the doctors you will be visiting. Here are links to help you;

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

http://csn.cancer.org/node/224280

 

For a second opinion on the biopsy (if any), you may request the doctor to do send the slides for reanalyses or you can send it by courier yourself. Here are links about the method used at famous Johns Hopkins and Bostwick laboratories;

http://www.hopkinsmedicine.org/second_opinion/

https://www.bostwicklaboratories.com/services/laboratory-services/second-opinions.aspx

 

A good book about radicals;

“A Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (third edition)

 

I wish your husband luck in his journey and peace of mind for you both.

 

VGama  Wink

tarhoosier
Posts: 182
Joined: Aug 2006

I concur with VdaG. The first step is to do nothing for a day or two. Wait, breathe, consider. A final definitive biopsy opinion from JHU or Bostwick will give the truest opinion on G score which drives the decision. I hope the doctor or your own research has indicated that treatment with surgery or radiation will make fathering in the conventional way impossible. If this is not of issue then ignore it. The best choice, as stated, is to consult a respected medical oncologist who can weigh the options disinterestedly (without bias). Then make his choice.

From the biopsy information it appears you have time to do all of this. Including the Wait, Breathe, Consider.

He may consult with his local prostate cancer support group. Any advice he receives there is pointless amateur conjecture but the camaraderie, emotional lift and feeling of comfort and sharing may help clear one's head. It has done so for me.

Swingshiftworker
Posts: 637
Joined: Mar 2010

If you are going to stay w/Kaiser, you basically have only 2 choices -- surgery (open or robotic) and Low Dose Rate (LDR)  Brachytherapy (BT).  Your husband's PCa at Gleason 7 with so many samples involved indicates it is more advanced and there is a question of whether it may have extended beyond the prostate or not. 

You do NOT need to make an immediate decision but you probably shouldn't wait too long given the extent of your husband's PCa.  However, a few months really won't matter and you need to be fully informed about the options.  Surgery presents some very serious risks to the patient - mainly ED and incontinence which can become permanent if not done properly.  Your husband is still very young and I would think that the "quality of life" issues will be of utmost importance to him (and you).  Modern radiation techniques are as effective as surgery w/o the same risks or consequences.

Read the following article about the risks of surgery: http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects.

I had an early stage cancer (Gleason 6 w/a PSA less than 10) which made me eligible for CyberKnife (CK) radiation treatment.   This was the "best" method of treatment that I found after 2 months research after my diagnosis and fortunately I was able to change insurance carriers to get it covered.  However, in order to do that, I had to leave Kaiser (which  had been a member of previously ALL of my life).  Kaiser has a CK facility in South SF but they choose not to use it for PCa; only cancers they consider untreatable by surgery or other methods.  So, I had no choice but to leave Kaiser.

There are still times when I wish that I was still w/Kaiser because of the comprehensiveness of the services BUT Kaiser sometimes offers limited choices for treatment and, if you find that Kaiser does not offer your husband the type of treatment he prefers, I urge you to consider making use of other coverage that may be available to you.

Assuming that the cancer is still contained w/the the prostate, the radiation options available to your husband (wiithin and outside of Kaiser) are LDR BT, High Dose Rate BT, IMRT/IGRT, PBT and CK or SBRT.   If there is any likelihood that the cancer has already extended beyond the prostate, surgery would NOT be recommended because it will just cause serious trauma to your husband's body w/o removing all of the cancer.  Radiation treatment (IMRT) w/hormone therapy would be the better course of treatment in that case. Don't know if Kaiser offers IMRT w/hormone therapy as another treatment option.  You should ask about that.

Do your research and present your questions to the urologist again after you are better prepared to question him.  If s/he says that your options at Kasier are still only LDR BT and surgery (as they did to me), look for ways to get the form of treatment that you'd prefer.

Good luck!

 

bdhilton
Posts: 759
Joined: Jan 2010

Newlywed…Sorry to hear.  I had open surgery at the young age of 53 (days form 54) and like many here understand the frustration with “choices” to battle this beast.   As other are suggesting a second or third opinion is important…

If travel is an option as well as fund or good medical coverage to have the “best” work on your husband, I would first recommend Northwestern out of Chicago (Dr. Catalona you can make an appointment online if you wish) if you are considering surgery I would suggest the standard open process with Catalona or a member of his team and not the Da Vinci method (based on my research on issues-You need to do your own research).

Whatever treatment you choose (and I am not recommending any) never look back and you as well as your husband need to believe your choice was the best choice for his specific circumstances and all treatments has side-effects…no silver bullet here…

 

All the best in your journey…B

djs123
Posts: 102
Joined: Jan 2012

I agree with all the informtion recommended to you and am so very  sorry that. especially. as newlyweds you have been hit with such devasting news.

My husband was diagnosed with a gleason 9 very aggressive in January 2012.  He had his biopsy done at a local hospital and we requested the slides be sent to John Hopkins for a second opinion.  Several days later, I was able to confer by phone with the doctor as to his findings and I discussed with him the recommendations the urologist had given.  His bone scan and catscan where clean at the time.

We did alot of research on different treatment and came across Proton therapy"  Several men we know have gotten proton therapy and are very happy with their treatment and results.  Apparently it is a more targeted treatement is quite effective in cases where the gleason is not too high. We had contacted the Jacksoville facility for my husband to see if as a gleason 9  could be a candidate.  I spoke with the people there and they requested I send all the records and tests we had to date and they would review and make a recommendation.  After that review they did say that they could treat my husband successful.  Although we were hesitant since our understanding was the proton thereapy worked better on less aggressive cancer.

I then discussed this possible plan with John Hopkins since they had the slides and the prostate specialist at Mass General and both doctors disagreed with proton therapy for him and agreed with original treatment recommended which was 40 radiation treatments and Ht therapy.

Surgery was never an option because  at a high level gleaseon, even if had surgery, no dobut there would be cancer left and then radiation treatment would have to be done and then it all becomes about a quality of life issue.

I think it's worth looking into proton therapy for your husband.  It can't hurt to just learn about it, submit records and have a conversation.  The will automatically send you a packet with lots of information about the facility and the treatement.     We spoke to two men in their 50's that decded to go that route and were very pleaesd with the facitily, treatement and support groups provided.  I think it's important to study and explore all the options availabe and get advise from an expert you trust.  

They will be happy to refer you to patients that have actually gone through the treatment and you can learn from them first hand.

Btw, I did not have to pay for an of these phone conversations and all was handled in a very professional empathetic manner

It sounds like you may be on the west coast so here's a link to Loma Linda    http://www.protons.com/protons/index.page

At best you can educate yourselves as to what they offer.  

Good luck to you both, stay strong for him but don't forget about yourself either.  It's quite a job to support the men we love.

Best to you and God bless

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