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Partner just diagnosed

User
Posted 20 Oct 2016 at 07:21
Hi everyone

We are still not taking in the diagnosis of cancer...Gleason 7 (4+3) which is I understand not great. PS3 6.4 currently. Treatment options seem bewildering and frightening beyond words :(

I want to support my partner as much as I can but it feels like trying to find answers in the dark at the moment. Can I ask if anyone has had the intensive ultrasound treatment?

Thank you for being here

Mia

User
Posted 20 Oct 2016 at 09:19

Hi there
Yes is is bewildering and frightening and it is all so surreal. There are many of us on here who have experienced all the same feelings, have a look at my posts if you want to and there are many others with similar stories that will help you both understand more.
Firstly I too had a Gleason 7 (4+3) and a PSA of 9.4 and they deemed my cancer as T2a/T2B. i am 65 and have always been fit and healthy, so I was in total shock. I had the full range of tests from DRE, Ultrasound, Biopsy, MRI and then told what my option where. Bear in mind I live in Spain so all of this was carried out via a translator which made it more difficult. I wrote a short story of my experience from the first time I was told my PSA levels were of concern until the time I was discharged from hospital after my operation.
The advice I would give is to ask lots of questions, write them down before going back to your specialist and keep asking questions, you will get some idea of what to ask from reading others stories on here.
Your doctor should offer you the best option in his opinion based on your husbands current health, age and fitness level.
For me it was a full radical prostatectomy that offered me the best option for a complete recovery and despite the issues of impotency, erectile dysfunction, and incontinence this is what I opted for and three weeks post op I do not regret my choice, (although sometimes whilst in hospital i did) despite any issues I may have now or in the future.
The strength of my wife and I together got me and her through the bad times and family is so so important during this process, but there is a good result possible in the vast majority of cases, so don't feel things will never be the same again because they will return to normal.

So good luck to you both and remember questions questions questions, and look on here at other mens cases. Keep us all posted as you will receive a lot of support

PS if you want to read my story it is available on this website under personal stories as are several others that are also worth reading.
regards
HappyH

Edited by member 20 Oct 2016 at 09:46  | Reason: Not specified

User
Posted 20 Oct 2016 at 09:37

Hello Mia and welcome to the site.

Everything st the moment seems dreadful because life is full of ifs, ands and maybees.
Once you set the ball rolling for treatment it will get easier.

Everyone on here will have experienced what you are going through now so don't feel that you are in isolation because you are not.

My husband started at 5.9 3+3 which then went up to 6.3 and 3+4. He did not want an operation with the possible long term side effects so opted for permanent seed brachytherapy. There are many many treatments now for Prostate cancer, some more invasive than others.

If you go to Publications on this site you can download the Toolkit which is a set of pamphlets dealing with all aspects of PC including the various treatments and side effects.

Were you advised of a particular treatment? If you are unsure what you want to do then I am sure others on here will offer their advice. My own would be to make sure that you do research the options very well, from Active Surveillance right through to surgery. Active Surveillance means you are closely monitored until such time (and for some that can be many years down the line) as a decision has to be made. For us that was a year but it gave us a year's breathing space.. My husband's 3+4 was slightly better than yours at 4+3 (the first higher number is more important)but it may still be possible for your husband to ask about this.

You can also contact the nurses on this site during their open hours. The number is at the top of the page.

Remember, you are no longer alone with this but have access to real people who understand what you are feeling and going through and who can offer practical advice as well as a shoulder to lean on. Any questions - ask away.

No subject is taboo if the question is genuine. We are here to help and support.

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 20 Oct 2016 at 10:19
Hi Mia

Very very early days for you and partner. I can fully concur with happy h post/reply. See my profile also. Everyone is unique and any stage of diagnosis presents it's own challenges. Firstly there are plenty of much more experienced and informed folk on this forum. I was fortunate as although not involved in the medical profession at all I do have a reasonable understanding of human anatomy. . Why is that relevant. . I found it difficult to absorb a lot of the terminology in the first instance. Catch 22 . You don't then know what questions to ask.. ! As I was fit I had no relationship or contact with any GP. If you could post basic info in your profile it can help others. Ie age and any symptoms and experiences leading up to diagnosis. Happy H uses the word 'surreal'. A good word. talking to wife and others who have been diagnosed with any life changing injury illness. I think this hits people .. from denial . Disbelief. Sledgehammer. Brain fog. Panic . To 'oh dear'.. natural reactions. Some folk don't have anyone close at all. My friend was told over the phone he had cancer. I'm rambling now however looking back emotional that where you potentially are the most fragile. ie just told. Each treatment option will have advantages. Incidentally happy h had open surgery I had da vinci zero nerve sparing. The NHS dealt with me extremely well.

User
Posted 20 Oct 2016 at 18:49

Hi Mia,

You asked if anybody had had intensive ultrasound treat which I take to mean HIFU (High Intensity Ultrasound). You don't say whether this has been suggested or if it is a treatment you have come upon. To be suitable for this, the cancer needs to be contained within the prostate or very close to it so that the probe can focus on the affected area. Better results have been obtained where the cancer is only on one side of the prostate but the lack of long term follow up means the treatment is still regarded as experimental in the UK. There are few facilities offering this at present, particularly as a primary treatment, although more are forthcoming and looks promising.

I had HIFU as a salvage treatment and there is more if you search out my posts about it. One of several advantages is that it is repeatable if required or other major treatments can follow it if needed. It is preceded by a template biopsy and recovery after the operation is quick.

Edited by member 20 Oct 2016 at 18:59  | Reason: Not specified

Barry
User
Posted 21 Oct 2016 at 18:02

Hi Mia, I entered this alarming world a short time ago....Gleason 4+3 and PSA of 7.7.....Biopsy showed cancer in both sides, one more than the other, MRI Scan done and also Bone Scan which was clear.....having the Prostate removed on 2/11.....

First, DON'T PANIC.....there is plenty of time in most cases to get to grips with this condition, have the tests, look at the options and then get the treatment. Prognosis is usually ok and most men will die with PC rather than from it.....usually if a totally different cause....it's not easy and your mind runs riot, the fear of the unknown is terrible....but if you check out this site you will see that you are not alone, most of us have been through the same experience and most have come out the other side.....
There may be some consequences that affect life post PC but the main thing is that there will be life.....
Stay strong, keep in touch and take each day/step as it comes.....you'll be ok.....Paul....

User
Posted 22 Oct 2016 at 17:49

Hi Mia

if you haven't already done so give the Specialist Nurses a ring they are wonderful and can talk you through all treatment options and send you reading material in the form of The Tool Kit.

Best wishes.
Brian.

 
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