Told operation too risky :(

User

Posted 22 Apr 2018 at 11:01

Don’t hold your breath waiting for a specialist nurse - my dad, Stan and John all had the same CNS but we have never met or spoken to her. In some areas, they don’t seem to even allocate one. Another postcode thing.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Apr 2018 at 16:45

I agree with Lynn, seeing the urology/oncology specialist nurses is rare. I sometimes speak to them on the phone.

But during salvage radiotherapy all patients were seen weekly by a nurse specialist to discuss progress/issues.

Lynn, did John see someone weekly during radiotherapy?

Ian

Ido4

User

Posted 22 Apr 2018 at 16:53

He saw the oncologist every Wednesday - Mr B had the weekly scans available and would go through any side effects that were emerging, etc.

At some hospitals, men only ever see the nurse specialist rather than a doctor, or the nurse is the person who gives results etc. Constantly amazes me how different it is across the country!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Apr 2018 at 13:55

Did you get a urine test at the doctor's too?

I would get one, it will show is there is any blood etc in your urine.

Ian

Ido4

User

Posted 26 Apr 2018 at 16:28

Rich, are you drinking enough? Dark urine is associated with dehydration. It is very easy to go down that route without realising it, as I have found myself!

User

Posted 26 Apr 2018 at 17:07

Could be radiation cystitis - try drinking cranberry juice (but not the cheaper 'from concentrate' stuff - try to get pure juice or buy frozen cranberries and blitz them in a food processor.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Apr 2018 at 21:03

Rich

I did a variation on another member's recipe. I boiled my fresh or frozen cranberries in a small amount of water without sugar until they popped, I then strained them through a sieve. You can then add water if the taste is too strong.

Make sure you are getting the right amount of water in your bladder for the RT session. I know for a fact that on occasions my bladder was empty during treatment yet it still went ahead. I know the bladder was empty because my catheter tap was left open.

My problems started 3/4 months post SRT, the first sign was losing lots of debris and blood clots. There are very few consultants that understand radiation damage, fortunately severe damage is not that common.

Detecting water infections can be difficult, samples are sometimes sent to the lab to be cultured so the correct antibiotics are prescribed.Mine often come back as retest required.

Best wishes with the rest of your treatment.

Thanks Chris

User

Posted 29 Apr 2018 at 00:12

G6 or G9 makes no difference if they get it all. And not much point doing a PSA test prior to starting RT since the hormones will be keeping it falsely low. I don’t know what you mean about having no indication of anything.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 Apr 2018 at 00:44

Not many people in this world get a full remission from cancer although some are more likely than others - leukemia and some lymphomas, for example. That's not to say that no-one gets full remission from prostate cancer, they get on with their lives and put it into their past. Nor does it mean that there aren't loads of men who get a 15 or 20 year remission after successful treatment. Your onco is giving you a shot at curative treatment - if it works you get full remission or a respite of 20 years or more as a prize. He wouldn't be wasting valuable resources if he didn't believe it had a reasonable chance of being successful.

Time for bed!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 Apr 2018 at 10:33

Hi Rich, sorry Fybogel doesn’t seem to work for you. I know people who take it for other bowel conditions too and you are the first I’ve heard from where it doesn’t improve symptoms.

We are all unique.

Best wishes, Ian

Ido4

User

Posted 29 Apr 2018 at 21:38

Originally Posted by: Online Community Member

Time for bed!

My mum had an agressive breast cancer when she was 50, she is now 88 I think that counts as a full remission?

User

Posted 29 Apr 2018 at 21:46

Yes, I would say so as well - how blessed you are as a family. Current NICE thinking is that women treated for breast cancer become just as likely to get a recurrence or new breast cancer, unless they stay on HT for at least 10 years so unless your mum's medical team encouraged her to stay on treatment for a sustained period she is doubly blessed. We have a nephew who had leukemia as a toddler and is now in his 30s. As I said, the fact that, statistically, not many of the 360,000 who are diagnosed with cancer each year in the UK achieve full remission doesn't mean that no-one does.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Apr 2018 at 12:37

Hi Rich, it depends how low the numbers are but generally it will mean you are less able to fight off infections so be cautious when you are around people at work etc. The radiotherapy is a likely cause.

My neutrophil count has always been a bit low and has averaged around 0.85 the last year when it should be 1.5-4.0.

I’ve had a couple of re-tests to check the numbers.

My oncologist wasn’t too concerned about this although my GP is.

If your white cells are really seriously depleted you need to follow any medical advice given as it can become a medical emergency.

If you get a fever or feel unwell contact your medical team immediately.

Take care, Ian.

Ido4

User

Posted 30 Apr 2018 at 22:10

Not something I know anything about - a bit of infection wouldn't be unheard of during RT

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 May 2018 at 19:04

Good news

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 May 2018 at 19:51

That’s good news a Richard. Onwards and upwards!

Ian

Ido4

User

Posted 01 May 2018 at 20:47

I have used the Maggie’s at Edinburgh, they are fantastic. Great they have a group which suits for you.

Ido4

User

Posted 04 May 2018 at 13:09

These are very normal feelings Richard. I attended a Living with cancer course at Maggie’s which started 2 days after my salvage radiotherapy ended. The psychologist running the course discussed it. When on treatment we get a lot of attention and feel we are doing something about our cancer. When the treatment and attention suddenly ends we feel abandoned and all at sea.

It passes with time, just recognise it and let it go.

You’re a bit early in feeling like this mind, you still have 20 treatments to go. What are you like?!

Ian

Ido4

User

Posted 04 May 2018 at 13:18

Richard,
As Ian said this is fairly normal. When I finished my 37 sessions of RT and arrived home I was really emotional, I met up with lots of men (and women having RT for their own issues) and it was like being part of a family. Some were obviously at different stages of their sessions, some finished others joined. There was always a good time of sharing together and encouraging each other and once completed it felt like losing friends who we were unlikely to see again.

Arthur

User

Posted 04 May 2018 at 23:01

Hi Rich I had the same treatment at the freeman in newcastle, 6 months H/T and then the radiation which only takes a few minutes, followed the next day with cat scans, totally painless and I still feel good 8 years later,
So good luck and try not to worry

Notification

Join the online community now.