New very angry member - Fibromyalgia and now cancer

Hi Guys

I appreciate all the information provided and that I have made much use of during the past few weeks.

I was diagnosed yesterday with a low Gleason score of 3+3 in only one of six samples. I could have sworn that the result would come back negative - well, I guess I was wrong. I only agreed to have the biopsy as my PSA levels were slightly raised at 6.7 and 6.3.

Being 55 years of age and with three young children, I cannot really afford to get more sick than I am already with this pesky fibromyalgia thing (chronic severe pain for the past twenty years).

Needless to say, I am currently very angry and feel a tad frustrated at having to waste my time on further medical matters.

I am very tempted to have no treatment as my past history of issues in the lower body may make treatment slightly risky. I have had a large diverticular on the bladder from a failed operation as a new-born, frequent UTIs and major anal reconstruction surgery for haemorrhoids about 15 years ago. I therefore fear that any treatment could make matters worse. Incontinence and impotence are just too frightening to contemplate.

Being based in the UK also limits the options I have available as our health system is rather poor.

Please let me know if you have any thoughts on this.

balingtwine

Post Edited (balingtwine) : 9/25/2015 7:21:46 AM (GMT-6)

Welcome to HW, sorry you need to be here.

It's a shock to get one more thing thrown at you. No treatment, or active surveillance (AS), is a viable option for guys like you who are at G6 and lower PSA. Low risk patients often benefit from just monitoring and waiting. You could get many more years without requiring treatment. The current research shows that G6 is unlikely to metastasize. You could just get regular PSA tests with a repeat biopsy every few years.

Given your other medical concerns, treatment for PC might cause more harm than good - why do it unless it becomes more serious?

What are your doctors saying about this? I have family in the UK and understand your frustration with that system. I think you should pursue an AS monitoring program, unless it's shown that you are in a higher risk group.

Andrew

InTheShop said...
Welcome to HW, sorry you need to be here

Many thanks InTheShop

Your histology and age is very similar to mine. But you have opted to go with treatment. May I ask whether this was your personal choice or a recommendation of the oncologist/urologist?

compiler said...
Balling:

Here is your game plan: GET A SECOND OPINION. Have the slides sent to Jon Epstein at Hopkins (google him for more information).

IF he confirms these findings, then it would make perfect sense to just keep an eye on your PSA. In other words, no change. Especially given your other issues, this makes perfect sense

Mel

DITTO!

Guys - balingtwine is in the UK on national health. Second opinions and sending slides to JH aren't going be an option for him. He'll be lucky to get just basic treatment.

balingtwine - to answer your question, I chose treatment because of my Gleason score, 3+4 and the location of some of the biopsy samples suggested that there was a small chance that some PC may be on or just outside the prostate capsule. I chose radiation since that would cover the areas of concern and surgery would have been a greater risk (I have heart/lung issues).

A 3+3, you likely don't have the same concern. I think you might be a good candidate for AS and you should have that conversation with your doctor.
Andrew

My family in the UK doesn't have any praise for the system. I hear plenty of complaints from them.

I like your consultant. Waiting is a good choice and if you've have a good consultant watching your case, you'll be just fine. The trick will be to figure out what triggers you from watch to needing treatment. Sometimes that could be a specific PSA number you cross or a followup biopsy shows things have changed.

Hang in there,
Andrew

The suggestion to get a second opinion, and even a 3T MRI, if it is at all possible in the UK, is a good one. That will give you much useful information as to whether it would be advisable to go on Active Surviellance, and avoid surgery or radiation, at least for now. This is especially important given your other issues, which sound like they might make surgery or radiation higher risk than normal.

I would push as hard as possible for this

Tall Allen said...
focal ablation.

Many thanks for the recommendation. I just read a bit about this and was quite impressed.

I shall see whether I can be part of a trial at UCL.

The Royal Marsden (London) has a 3T MRI... now whether you can get at it I can't say.

Paul 65

Hey balingtwine,

Jute or sisal or nylon? (I favor nylon for our minibales packed at a density of 0.5g/ml).

You mentioned having frequent UTIs. A UTI can raise the PSA significantly.
See the attached article:here.

I hope this helps.
Jeff

balingtwine, thanks for your comment. I'm now just over 6 months from surgery, and I'm doing great. Except for the 5 scars on my belly, to look at my one wouldn't know that I'd ever had it. That and the need to always know where the nearest bathroom is.

Bailingtwine,
I don't know a thing about the healthcare in the UK, but with what you've mentioned about your age and condition, I would suggest that IF you decide to have treatment now, you look beyond the surgical route. There are numerous other treatments that give you a better chance at maintaining your quality of life afterward.

Hello Balingtwine

I fear I may have the wrong end of the stick here and will be happy to be corrected but when I read your posts I kinda get turned around...

I think your Urologist is recommending 'watchful waiting' more frequently referred to as "Active Surveillance" (AS) or, if you wanted curative treatment an open radical prostatectomy (not robotic which is strange). In your first post you mention the possibility of complications with surgery due to previous procedures and also a total lack of desire to suffer possible side-effects of incontinence and impotence; 100% understandable.

You have a Gleason 6 and appear to qualify for AS and could quite possibly stay that way for quite a while before curative treatment is even necessary and face no surgical risk nor side-effects nor time off work. That would seem a good place to be to me, given your situation?

I'm slightly baffled as to why brachytherapy or other radiation therapy is not being recommended and it may be worthwhile seeking out a radiation oncologist to explore these options. While it doesn't appear imperative yet, such treatments can be curative, less debilitating than a surgical recovery (you mention time off) and present fewer side effects. I'm not well educated enough to know whether you may be contra-indicated due to previous surgeries or such but a G6 is a good candidate based upon what I see others here have done and from the description of your situation both AS and RT appear preferable to a prostatectomy.

I think the bottom line here is... don't make a hasty decision (you don't need to), don't listen to just one voice and do chase down RT. HIFU sounds promising and others here can comment on it's supporting evidence; you may face some stiff inclusion criteria for the trial (so have options).

If I've missed something in your situation, apologies, if I've mis-spoken it'll soon be corrected!

Paul

Post Edited (Paul65) : 9/11/2015 10:15:28 AM (GMT-6)