Husband Can't Decide

Hi, we live in Perth Australia. My husband has recently been diagnosed but is reluctant to take any treatment. He wants to use dietary changes and monitor PSA. However, he hasn't been back to have bloods taken although he has pathology form! He has definitely decided that he does not want surgery but might consider radiotherapy. We are awaiting notification of that appointment but it will be at least a month away. (My husband works away and won't alter his schedule for appointments. He has also said that he will not waste more than one day, on doctors, whilst he is home for a week!)

His PSA was discovered incidentally, through a screen because his blood pressure is no longer controlled well by medication. He also was diagnosed with diabetes at the same time and is more pro active about this.

The urologist said he needed definitive treatment and recommended surgery in order to save radiation for salvage therapy, if required. He also said that he would not do nerve sparing surgery as his aim was to remove all cancer with the view of a "potential cure." (Note, urologist had his secretary telephone me, 3 days after biopsy to tell me my husband had cancer! I had to then tell my husband, via telephone, of the result)

The pathology report does not have all the details that many of you have unfortunately. I asked the uro for more details but he merely stated that the core has a potential of 20mm but many of the cores broken when being extracted.

His details are as follows:
Age 57 in October
PSA Aug 2010 2.5
PSA Dec 2012 3.7
PSA Oct 2015 4.01
DRE- moderately firm
Referred to urologist Nov 2015
Bx 25/01/16
Ct and bone scan Feb 2016 - clear
Biopsy results as follows:
Rt base- HGPIN
Rt Mid - HGPIN
Rt Apex -HGPIN
Rt TZ - 3+4=7 Grade 4 30%. Tumour length 0.5mm
Lt Base- HGPIN
Lt Mid- 3+3=6. Tumour length 1.2mm
Lt Apex 3+3=6. Tumour length 1.4mm
Lt TZ. 3+3=6. Tumour length 2.4mm
Adenocarcinoma identified bilaterally. Pathological stage T2c
Tumours identified are suggestive of transition zone origin

Any thoughts, ideas, help please.

I am hoping that, if cancer is from transition zone, it is well contained and that our hesitation will not cause further problem and possibly give us the time we need for my husband to accept that treatment, of some form, may be required.

PS no prostate cancer in family but his brother died, age 36 of pancreatic cancer and his mother of oesophageal cancer- all within the last 3+ years.

Thank you for reading

Hi Allen, thank you for your quick reply. It was quite a relief to hear that we don't need to rush. The urologist wanted surgery booked for May and said he would not be happy to leave it any longer. We felt quite down when we left and my husband is loathe to visit him again. I should have mentioned volume is reported as 36cc. Does that change anything? I certainly hope not.

We are working through this together but, I know that if the receptionist hadn't rung me, my husband would never have told me and he would be avoiding even thinking about this. He has a totally different outlook to many on this forum. For him, quality of life is everything and he would sacrifice longevity for this. He has been this way for 30+ years and, even in our 29's, made me promise to "turn off life support" if his recovery would impair his life. So totally different to me! We laughed about this when we were young but it is not at all amusing now!

Mirellen, there are several guys in here who are in OZ, and I'm sure they'll be along to chime in about specific doctors and programs that you might have access to.

The best news is that he is curable. Not treatable, curable. Thing is, to get the treatment he needs you may need to travel outside of Perth. Best of luck to you in your research. With a G7, you do have time to seek out the real experts in each of the possible treatments.

I followed active surveillance for years but decided to have robotic surgery when the grade changed to Gleason 7. I've studied the risks and IMO the risk-reward balance changes in favor of treatment for younger men once Gleason 7 is found. There are advantages and disadvantages to both surgery or radiation - your husband should do some thorough research before making a decision. One reason that I chose surgery is that you can almost immediately tell if the prostate cancer is reoccurring as PSAs are basically zero after surgery. Additionally, if adjunct therapy is required, it appears to be easier to spare the nerves with adjunct radiation than adjunct surgery as radiation tends to meld the nerves to the tissue.

That being said, some men are very pleased with the results of radiation therapy.

As a final point, I think your husband has to work on the psychological aspects of having the disease as much or even more than as the physical aspects. He may wish to join a support group as you can get information from men who have been through the various procedures. I personally also found that researching both Stoic philosophy and Echart Tolle's philosophy helped me, but I realize that those things are not for everyone.

Certainly no rush to surgery by May, unless the uro/surgeon has a payment on his yacht due then. And I agree with the above comments--you should use this time to talk to specialists that practice the other treatment options. Unfortunately, it will take some time to track them down and set up appointments (most of us on this forum are in the US, not sure about how available specialists are in Australia). But it's the only way you'll get broad-based opinions--most specialists simply don't know a lot about the treatments they don't practice.

And your husband should do very well with that diagnosis. Many of us here find the decision about what to do the most difficult part--once that's done you'll probably even relax a bit. Good luck to you and don't be shy about asking additional questions.

>>3+4=7 Grade 4 30%. Tumour length 0.5mm<<


this is a concern. I would get treated.

ed

Hey shudderingThud.....good luck on your RALP Monday mate!

 

Yah...........totally understand that.

A buddy of mine just came out from a hip replacement, and has a cath in ... or at least did for a couple of days ..... and he said it didn't bother him even a little bit.

This guy is one of those that needs sedation to even get a blood test, so if he says it's nothing to have one....then I would believe it.

Hi all, thank you so much for your replies. I concur with each and every one of you. My husband requires treatment and we actively need to seek further opinions. I believe that my husband does need some psychological support but he will never acquiesce to this. His mother and brother both had cancer and lived only 9 months after the diagnosis- totally different types though. He watched them live only for treatment and I think that has scarred him.

In answer to the question regarding Medicare/ private health- we have top hospital cover but I am happy to use the public system if that is better for him. We have been referred to Prof. Joseph at Sir Charles Gardiner/ Genesis Cancer Centre but haven't receibed an appointment yet.

One query, how do I request a review of the biopsy results without offending the specialist? Do I contact the pathologist rather than the oncologist? How long do they keep the samples? How do I have them transported across the country? Are they transmitted electronically? What is the cost? The initial pathology cost, for us, was $500 approx., after medicare and HBF paid their share. (CT and bone scan cost $1400) is this normal? We were also told that brachytherapy would cost $16 000 and private health and Medicare did not cover this? (I am not sure if the urologist said this to convince my husband to agree to surgery) so many questions! Hope my friends in AU can help. Thank you.

Grege6 and TA,

You have both mentioned getting opinions from "Philip Strickland" in Sydney.

Do you mean "Philip STRICKER"? who has a great reputation.

Chas

Yes Chask, thanks for the correction.

Now I am sure I left it behind! Dr Phillip Stricker! Not Stricken!
Cheers
Grege6

Mirellen,
As an indication of costs, with my robotic Prostatectomy performed at the Wesley hospital in Brisbane, my out of pocket expenses for the operation alone amounted to around $12000, not including travel, accomodation, anaesthesis over and above costs etc etc, despite the fact I have had top hospital and ancillary cover through private health insurance for over 30 years.
The reason given, was the actual procedure does not have a Medicare item number, thus no rebates apply. The operation performed robotically is still considered to be not proven enough in Australia despite many positive outcomes, including my own.

I do believe other methods of removal have greater rebates through private health insurance.

For me, I am still of the opinion that I chose the right course of action, however I am in no way trying to influence you in any way of you and your husbands decision, just relaying approximate costs applicable here in Australia. Of course, different surgeons charge different fees.

Again I hope you have a positive outcome, no matter which way you go.

Regards
Grega