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Treatment OPTIONS??.. we Just got PS diagnosis....A wife needs UR opinions on SEED therapy.

A wife asking questions's picture
A wife asking q...
Posts: 2
Joined: Apr 2010

My hubby, Sean age 42, was just diagnosed with PC in Dec. (2 days after Christmas)
no symptoms, no signs.
(other than he runs a pretty constant low grade fever)
He is a cancer survivor (15 yrs now) TOTALLY unreleated cancer, fever was his mainstay to know that something was wrong. :'(

PSA test was 9.8 & found during a routine yearly blood test.

Bioposy was in Jan. I don't know all the terms, but 5 out of 8 were cancer.
They say his chances are very good.
Doctors say that prostate is small & Gleason is low (but I don't remember what it was)
He is very skinny, VERY active & healthy & for some reason that is suspose to be good.

Right now the Dr.'s are ONLY giving us 2 options.
Seeds or Surgery.
We have Medicare, so thank God that was approved when he was diagnosed (we own self business & had no insurance before cancer)

He is leaning towards seeds since he is a work-a-holic & they promised him back to work in 1 week or less with little to no side effects.

As his wife, I would like to reasearch natural treatments & wait, but he is not too "open" to this idea.

I am VERY concerned about seeds & how this radioactive will affect our children being too
close & how this might hurt me in general.
What they are saying does NOT add up to me???

BOTH options seem to have ED & IC issues so does anyone have any advice for "A wife asking questions"

Are there other options out there, have you had this seed implant & how did it work for you?

Thanks!

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Welcome to our forum and sorry to hear about your husband having the cancer at such a young age. I'm 55 and was treated last Aug. 2009 with the Davinci Robotic surgery for my prostate cancer. Doing great now.

It would be helpful if you could get your husbands exact number for his gleason score that is made up of 2 numbers such as 3+3 (6) or 3+4 (7) etc. Since you said the doc says it is low that is a good sign and most likely 3+3 (6).

I looked into many options including seeds. From what I understand the risk of radiation leakage to others is very low but they recommend not holding infants on your lap for about 1 year. I know one man that had seed implants over 20 years ago and is doing great with no cancer returning.

Ask questions, and read, read, read as much as you can before settling on treatment. One other option to consider is also Proton treatment. There are numerous centers around the US that offer proton. It is a type of radiation. My Dad was treated with it back in 1997 and is doing great also. So you see there are many options and each person has to decide what they will use for the first line of treatment.

If you or your husband need to talk in person just say so and will be glad to call you. I'm not a doctor just another cancer survivor which your husband is also!

Larry age 55
PSA 5.1
Gleason 3+4 (7)
Davinci Surgery at Vanderbilt Aug. 2009
Proud member of the 0 club - No PSA So far past surgery
0 Pads and having success with the help of Levitra

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Larry gave you some good advice. Other things you may wish to consider are some different forms of radiation such as Image Guided Radio Therapy (IGRT) which is delivered by a procedure known as Cyberknife or Novalis. These procedures deliver the same radiation dosage as seeds but in a much shorter time frame (which is suppposed to be good for killing early cancer) with minimal side effects. It also delivers the radiation with a very high degree of accuracy so there is minimal risk of damaging adjacent organs such as the bladder, colon, seminal vessels, and so forth. If you google Cyberknife or Novalis you will find lots of information about them.

I have investigated seeds too and learned that the they use either iodine or paladium isotopes which both have relatively short half lives and decay to harmless levels in about six months. You may still trip airport sensors for up to a year and they recommend that small children not sit in your lap during the period radiation is active. During the procedure they insert between 50 and 100 seeds into the prostate. The seeds (each one is about the size of a grain of rice) remain in the prostate forever and sometimes migrate to other parts of the body which could potentially be an issue but haven't seen any case studies about that. They recommend that you use a condom during sex in case one comes out through our urethea. If a seed rubs up against the colon it could cause some problems with rectal functions and might require later surgery to repair.

The proton treatment Larry mentioned has been in use for 20 years and is offered at several areas about the country. It was pioneered by Loma Linda Medical Center in Southern California. This procedure uses protons instead of the photons used in other forms of radiation. The claim a high degree of success but there are some tricky issues, one of which is adjust what is known as Bragg peaks (the concentration of proton incidence) at the prostate and not other organs. If the prostate moves around -- and it can move when the bladder fills or when gas passes through the colon -- the Bragg peaks can be off slightly, potentially causing damage to the rectum, bladder, seminal vessels, or the nerve bundles which surround the prostate that enable a man to achieve an erection. The proton procedure requires that a special bed be built to conform to your body to minimize movement. Treatments last every day for eight weeks (about 15-30 minutes each day) and unless you live near a facility you would have to get an apartment nearby for the duration of the treatment.

There are many, many ways to treat this cancer, particularly if it is detected early. If your doctors are only giving you two treatment options then you ought to expand your circle of doctors and get more opinions. This is all about your husband, not the convenience of your doctors. Most urologists (surgeons) want to do surgery. Most radiologists want to radiate. There are pros and cons associated with each and you owe it to yourself to make sure you understand exactly what you're getting into.

Homeopathic or neuropathic treatments may be effective but I am not aware of any studies that show these can cure prostate cancer although I believe they can slow the cancer and retard its spread. I am convinced that diet and lifestyle affect our bodies profoundly and can create an environment where cancer can start and thrive or not. In Asia, for example, where dairy is not part of the normal diet, prostae cancer incidence is about 1 in 100,000. In the USA it's about 1 in 6. There are some good books and literature on the internet about diet and cancer.

Even though this is usually (not always) a slow growing cancer, the young age of your husband means that even if you chose a wait and monitor approach now, eventually he will need to do something about it. I would think its better to treat it early while he is healthy than to wait till it becomes more of a problem and other health issues might preclude treatment options. On the other hand, new advances are coming out every day and who knows what will be available in five years?

This is a good forum to collect information but remember that most of the people who post here are not doctors and that every single cancer case is unique. Ask lots of questions.

Good luck to you and your husband.

Age: 59
PSA at DX: 4.3
Biopsy: 1 of 12 cores positive with 15% involvement
Gleason: 3+3=6
Stage T1c
Still undecided on treatment options but am considering Cyberknife, proton therapy, or active surveillance.

A wife asking questions's picture
A wife asking q...
Posts: 2
Joined: Apr 2010

Men,
Thank you for your advice. This is detailed indeed & what I have learned.
It's the "seeds can come out" that bother me.
The doctors said that I would only get "about a chest x-rays worth over 6 months the seeds are active" but they then on the other hand sais he shouldn't be within 6 ft of anyone of child bearing age?
This do not go hand & hand ??

So does this mean that kids in the car are too close?
I am very worried about this, it's strange to have a treatment affect other people. That shouldn't be. A man should only have to worry about saving his own life & getting cancer free, than affecting other people.

About the gleason score, I asked this, but the uriologist is very quick & just says he doesn't know & it's low.
I asked the same question. Ok you want to seed prostate or take it out (they don't suggest him "Active waiting" because like you said he is so young that he will have to do something.
I asked how can you tell that it's locoalized in only the prostate? & not somewhere else as well? The doctor (both of them) told me that they haven't developed the technology to tell. ?? Is that true. I would hate to think that they seeded the prostate to then come back & say, Ooops, it's not also in the _______ area.

My hubby says that he is not crazy about having "dead flesh" inside him for the rest of his life. (knowing that seed kill the prostate)
Seems like taking it out would be about the same affect, either way it would be non-functioning, right?

Hubby is not open to major diet changes, this was my hope, but he is not willing to let go of the ladies...(Little Debbie & Betty Crocker :o)

I know all cases are unique, but how can you get a man to pursue other options & to "own" his cancer. I feel that he needs to research & know what are the risks etc.. for each of thse treatments. However, he hears the doctors say...easy, seeds, it'll be over & your back to work & he jumps at the idea with little to no forthought.

What's a wife to do. This will affect me & potientially the kids of how close they can get to him.
Strange treatment, awful disease!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

All men are different and cope with this in different ways. Some dig deeply into the research and others try to shut it out. It's good you're doing your research. You should demand to see the biopsy report (it's yours) and make a copy. It will tell you how many cores are positive and what the Gleason rating is. Without that basic information it is difficult to make a decision. And you should get a second opinion on the patholgy report from the biopsy. Johns Hopkins can do it.

There is likely little harm in having your children in the car with you while seeds are active. It is a pretty low dose of radiation overall and the exposure to small children is a precaution.

There is no silver bullet for this cancer. Everything has a pro and con. A side effect of the seeds is that after about three years there is increasing incidences of urinary in ED issues. Other types of radiation which are less invasive have fewer complications.

Radiation shouldn't leave a dead fish inside of him. Radiation kills the cancer but normal cells recover. Men who have had radiation can achieve normal ejaculation and are not sterile.

At the end of the day, it's his decison.

Kentr
Posts: 111
Joined: May 2009

I had seeds impanted in January 2008. According to my oncologist, children should not be held in your lap for about three months and close contact (snuggling up) with a pregnant woman (or one of child bearing age) should also be avoided for a similar period. Overall he said a three foot (not the six feet your doc mentioned) distance is just fine - it's not like your husband will be glowing green or anything. These time-limit/distance warnings are probably way over the top but I think it's best to heed them for safety's sakee.

If your doctor doesn't know what the gleason score is, I'd find another doctor - that's nutts!

Try to steer your husband to this site. He can see he has "company" and can learn a lot about what each of us has gone through.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

You can ask for a copy of the biopsy results...they are yours and by law they have to furnish those to you if you ask. I have asked for copies of every single medical report I had regarding my prostate cancer except the surgery report...which I plan to do on my next visit with the surgeon.

Here's my path and results and a compilation of reading resources if you so choose to get more information:

52 years old
PSA 9/09 7.25
PSA 10/09 6.125
Diagnosis confirmed Oct 27, 2009
8 Needle Biopsy = 5 clear , 3 postive
<20%, 10%, 10%
Gleason Score (3+3) 6 in all positive cores

11/09 Second Opinion on Biopsy slides from Dr. Koch
(4+3) = 7 5%
(3+4) = 7 10%
(3+4) = 7 10%

Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined

Da Vinci 12/29/09 - Dr. Hollensbee & Scott

Post Surgery Pathology:
Prostate size 5 x 4 x 3.5 cm Weight: 27 g
Gleason: Changed to (3+4) = 7
Primary Pattern 3, 80%
Secondary Pattern 4, 18%
Tertiary Pattern 5, 2%
Tumor Quantitation:
Greatest Dimension, Largest tumor focus: 19 mm
Additional Dimension 18 x 15 mm
Location, largest tumor focus: Right posterior quadrant
Multifocality: Yes
Greatest dimension second largest focus 10 mm
Location: second largest focus: Left Posterior quadrant
Extraprostatic extension: Yes
If yes, focal or non-focal: Nonfocal
If yes: location(s) right and left antero-lateral
Seminal vesicle invasion: No
Cancer at surgical margin: No
If no, closest distance with location: less than 1 mm, right posterior quadrant
Apex involvement: No
Bladder involvement: NO
Lymph-vascular invasion: No
Perineural invasion: Yes
Lymph nodes: 9 from right pelvic 0/9 positive
Stage: pT3a, pNo, pMX
All nerves sparred - found two additional pudendal arteries

FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE
Virtually Pad free 2-20-10
Next PSA scheduled for 5-26 Results 6-2-10

Early on started on Viagra 100mg pills cut into 4ths so 25mg per day dose then a full 100mg on every 7th day.

Also bought pump and used sporadically to get blood flow to member. Within about three weeks or 5 weeks from surgery (can't remember now) had usable erections. Currently since about 4-10-10 only need ¼ pill to get usable .

Recommend-Guide to Surviving Prostate Cancer-Second Edition
Dr Patrick Walsh
Recommend-The First Year Prostate Cancer-An Essential Guide for the Newly Diagnosed
Chris Lukas
Recommend-Saving Your Sex Life-A guide for Men with Prostate Cancer
Dr. John Mulhall
Prostate Cancer Meet The Proton Beam-Apatient's Experience
Fuller Jones
Recommend-You Can Beat Protate Cancer and you do nto need surgery to do it
Robert J. Marckini
Recommend-Surviving Protate Cancer without Surgery-The New Gold Standard that save your life and life style
Dr Michael J. Dattoli
Conquer Prostate Cancer
Rabbi Ed Weinsberg
Recommend-Eat to Beat Prostate Cancer Cookbook
Ricketts

Comprehensive Book list on Prostate Cancer - http://www.wellnessbooks.com/bookstore/

http://www.havasupaitribe.com/waterfalls.html

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

I would be very concerned that the doctor does not KNOW the Gleason Score. That should be a deciding factor in line of treatment a Higher Gleason score say a 9 or 10 is total different option then the 6 or 7. Also If it was a 4 or 5 would be different such as possibly watchful waiting. I would demand the reports! They are your right to see as the patient.

It is funny that you mention Little Debbies! I used to work for them back in my younger days and they are about 6 miles down the road from where I currently work in Chattanooga!

You are doing what you should do in being supportive of your husband. Talk to him, encourage him, listen to him. You can also help with the research and talk about the risks of each with him even if he doesn't want to.

One excellent book which you can order is Dr. Patrick Walshes guide to Surviving Prostate cancer. He is a surgeon and talks more about surgery but it is an EXCELLENT Book on Everything.
Another good book that I liked was call Saving Your Sex life by Dr. John Mulhall.

Larry

dav5942
Posts: 16
Joined: Feb 2010

In addition to the great responses you are getting-you should get copies of all tests, doctors notes, etc. You will need these in order to gather information from other experts, doctors, etc.

Swingshiftworker
Posts: 620
Joined: Mar 2010

You've already gotten a lot of good advice. Take your time and don't rush into treatment!

I was only given the option of brachytherapy (BT) and surgery too and I've decided that neither of those treatments are acceptable for me. I've chosen CyberKnife instead and plan to get treatment in a few months after I switch medical insurance carriers from Kaiser to Blue Shield.

You husband sounds typical of many men -- they just want to "solve" the problem as quickly as possible. For some men, that mean's cutting it out by surgery BUT there are huge risks to surgery that need to be considered. Given that I was only given 2 choices, like your husband, I was also initially attracted to BT too, because it seemed so "easy" BUT further research on other treatment methods (like CyberKnife and Proton Beam Therpy) resulted in my rejecting BT because of the problems you're already aware of -- radioactivity, seed migration and airline screening. So, you need to make your husband aware of the risks of treatment by BT and the availability of other methods of treatment that are just as "easy" but that present fewer risks of complications.

You also need to make sure you have all of the data you and he need in order to make a rational treatment choice. If you don't know your husband's Gleason score, you really can't do that. So, the first step would be to get a biopsy and Gleason assessment (or if you've already had a biopsy, get a reassessment of the slides. Dr. Jonathan Epstein at Johns Hopkins Medical Laboratories in Baltimore, who is one of the leading prostate pathologists, will do it for just $250.

Good luck!

Swingshiftworker
Posts: 620
Joined: Mar 2010

Somehow posted a dup msg.

Swingshiftworker
Posts: 620
Joined: Mar 2010

Somehow posted a 2nd Dup Msg. Sorry . . .

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