We understand that people with cancer are worried about coronavirus.
Here is the
We will update it regularly.
Lorraine is a nurse specialist and sex therapist and volunteers here to answer your...
I am 50 years old and have been diagnosed with prostate cancer earlier this week. It is contained within the prostate and I was told that the Gleason score was 7 (4+3) , PSA level is 4.9.
I have been offered 4 options:
1.robotic assisted laparoscopic prostatectomy
3.external beam radiotherapy and hormones
in the report it says that I am suitable for all options favouring RALP (surgery). I would appreciate any advice or experience on the various types of treatments mentioned and it’s side effects. I need to let the hospital know by next week of my preferred treatment
Hi andy I had ralp in July last year, surgery went OK ,psa undetectable. But side effects are awful ,I am still wearing pads for leaking, a distinct difference in length of penis Ie smaller. scar tissue in urethra causing trouble passing wee ,already had dilation to help but it will come back so I will have to learn self catheterization.sorry to go on but you did ask.good luck with it all
thanks for your honesty chippy, did they give you options and you choose to have ralp?
If you don’t mind me asking where did you have it done ? i am thinking more towards brachytherapy but not 100% decided yet
I had RT without the hormones and so far happy with the outcome, treatment was 2017.
Brachy is worth considering, there are two kinds, low dose rate and high dose rate, not all centres do the latter.
If the tumour is small and not near the capsule edge active surveillance is worth considering, I was on AS for 4 years.
I’m also 50. I was diagnosed April 2019, I’ve had surgery (wasn’t robotic) side effects were not too bad, 7 weeks recuperating, minimal use of pads indeed only when one day I forgot I realised they weren’t necessary, I just needed confidence to go without. Both nerves spared some function returned with help from viagra (given prostrate cancer we’re entitled to viagra on NHS as more consistent). Surgery success is down to skill of surgeon and location of cancer. Unfortunately my cancer has spread to ribs so my side effects are now from further treatment. If the cancer has spread locally then radiotherapy can be offered post surgery, surgery post radiotherapy is more difficult. If successful then no further treatment would be required, no hormone therapy... yes regular blood tests but they decrease in frequency.
Consultant was concerned over brachytherapy due to age and possible long term impact, so I discounted.
Radiotherapy alters the prostrate which makes surgery post radiotherapy more tricky. Also from what I understand side effects are similar with extra possible effects on bowels.
Active Surveillance to me was burying my head in the sand waiting for things to get worse. If I needed treatment then I’d prefer it whilst younger and healthier. The lesion for me was close to the capsule which influenced the decision as well. I thought surveillance was not waiting to see if cancer altered but almost playing Russian roulette waiting until last moment before acting, it was already too late for me which we couldn’t confirm until prostrate had been removed.
It only became apparent that the cancer had spread at the blood test about 8 weeks post surgery. I was fortunate to be offered puma pet scan, first person in Bath Ruh. This showed low volume in the ribs which wasn’t picked up by normal scans.
At the end of the day it’s your journey and your decision, based on what you know. There are no right or wrong decisions only what’s right for you. All the best for your next steps
I opted for active surveillance but my Gleason score was 6.
I'm hoping that when/if the time comes, better treatments such as immunotherapy or proton beam therapy will be available.
The 3 monthly PSA tests are stressful but I try to consider it as the new normal.
Hi andy options were Ralp or radiotherapy, I chose Ralp because I am a Carpenter and always cut out rotten timber as it sometimes comes back, also my brother had radiotherapy for is prostate cancer, he had a bad time with it but not everyone will be the same .had my operation done at cheltenham general hospital they were brilliant it is a difficult decision you alone have to make good luck
Firstly to say with a Gleason score of 4 + 3, I'm shocked that you should be offered active surveillance. I believe the guidelines suggest AS for gleason less than 7, i.e low risk. Sorry to say a Gleason 4 + 3 (not 3 + 4) is considered by some as equivalent to Gleason 8.
I strongly suggest you read up as much as you can about all the other options, particularly tgeir benefits and drawbacks.
I suggest you look at the statistics, i.e. the chances of things, not just what the things are.There is a lot of variation in the outcomes of the treatments and if you listen to the stories, good and bad of men who've had the various treatments you'll most likely get some false impressions.
e.g. you might get one story of someone getting erectile dysfunction following surgery, then another of someone saying they didn't after RT. This is misleading, not all men get ED after surgery. not all men escape it after RT.
You will hear of men having permanent incontinence and other men having none.
Appreciate that surgery has immediate consequences, RT also has "late" consequences, that may have years before they appear.
There's also a matter of choice, surgery means being in hospital a couple of days and having a tube in a couple of weeks, external RT may mean going to a hospital every weekday for several weeks etc RT has side effective. e.g. fatigue, and so on I've known men refuse RT because they couldn't afford the travel!
Hormone therapy, if you choose that, has it's own consequences.
If you do opt for surgery or RT there are things you can do to reduce the consequences or prepare yourself for them, find out what they are. It might seem irrelevant now, but it's better to think beyond just merely surviving.
Lastly, if you do opt for surgery, make sure you know it's "nerve sparing" if this is possible, as this can significantly affect consequences.
There's lots of information on this Macmillan website. Prostate Cancer UK is also a good source of information. The information is factual, evidence based, not just men's unique stories.
The stories have their place in helping you deal with any issues you may have and helping with the emotional impact.
Pre surgery my gleason score was 6 post surgery it was upgraded to 7.
Urboros as usual has good advice. We can only describe our own experiences and each cancer/man is slightly different with different surgical /radiotherapy challenges and side effects. If I'd chosen active surveillance that would mean further biopsy in 6 minths, is that the same for you that affecred my decision not to choose surveillance.
Nerve sparing or not there are treatments for ED. Not ideal or what any man wants but ensure you talk through with partner/ trusted confident.
As a couple we've accepted for the time being ED is a factor, given hormone therapy and stress of treatment sex is not on my radar. Oncw we're out of the current treatment we will try again.
For us it was more important to get this disease mamaged. It's a personal journey only by understanding risks and consequences can we accept any effects that we may be left with.
It's your journey, your consequence to live with. There's no right or wrong, only whats right for you
Hi Andy, my partner had a RALP in November, after spending 3 years on Active Surveillance, the monitoring identified a change to his Gleason to 4:3 & surgery or radiotherapy was then recommended. He is recovering very well.
Don't let your Consultant rush you into making a decision, until you have considered all the available options pros & cons. We felt overwhelmed by the amount of information thrust at us & asked for extra time before making a decision. Imagine you must be finding it even more difficult having only just being diagnosed.
Look at the overall statistics for outcomes of each option, rather than relying on the success / horror stories on this & other forums. Every man is different.
Very best wishes for whatever you decide.
Hello jemima I don't tell stories just the facts.hope all goes well for you and your partner.
Hi, just to clarify a possible misunderstanding. Any reference to "story" in this context does not mean that you are making things up.
It simply means that you are giving your account of your own experience When giving your account, nobody will imagine that what you give is anything but a factual account of your personal experience.
However, what happened and is happening with you may be very different from what someone else may be experiencing. Their factual account, of their own individual experience, is a different "story".
For example, I'm very sorry that following your surgery you are apparently having continuing problems with incontinence. This is awful and quite rightly you say it is and I'm not unsympathetic about this.
That is your "story" i.e. what you are experiencing.
What myself and other members are saying is that your story is only one person's account of the experience of surgery. Other mens' stories may be different.
Anybody trying to make a decision about what treatment option to choose it entitled to a balanced view of the benefits and drawbacks of the treatment options.
It is true that some men suffer ongoing problems with incontinence following prostate surgery, as in your case. This does NOT mean that all men will suffer, there is a degree or probability of this happening and it is useful to know this, not just hear from a very few men, possibly all saying how awful surgery is.
All we are saying is that if Andy reads of only one person who says they suffer incontinence after surgery, he will be getting a false impression. He needs to know what the chances are.
In fact, although stress or urge incontinence can occur after robotic surgery, commonly, it is light and only temporary. and men shouldn't be put off surgery because of this alone.
Thanks for sharing your story, nobody is denying the truth of what you say, but it is only one person's experience.
I hope you recover from any problem you're experiencing or find ways of coping.
I am a Gleason 3 + 3 on Active Surveillance. My PSA was 5.4 when diagnosed. Over the next 3 months I cut out a lot of processed meat - bacon, sausages, ham, gammon etc. I eat a lot of cooked tomatoes, pomegranate, avocado with a turmeric tablet each day and plenty of fresh vegetables. My PSA dropped to 3.5 in 3 months and at my next 3 monthly test was still 3.5. I still enjoy the odd steak and burger. I definitely recommend Active Surveillance with a few small diet changes and a reasonable exercise regime. My doctor is more than happy with my situation. My 2 brothers had the operation at 4 + 4 Gleason and you want to avoid it if possible. I hope this helps everyone out there.
Good luck to all, Hugh
yes eating fish and white meat is a plus, also staying away from sweets helps, there is a tablet that help some people called Pomo-t which has pomegranate, turmeric, green tea, and broccoli, all four help fight cancer and keep PSA down,
My husband had RALP on 11th December and we were both amazed at how he was , he came home the day after surgery catheterised for 2 weeks which he was dreading but definitely wasn’t as bad as he thought. He had some discomfort following the op but no great pains . He’s had a little leakage of urine when he bends but not every day he’s using male tenna pads but sometimes has no leaking at all . Still waiting for his follow up appointment for biopsy results. We have both been surprised at his reaction to surgery we expected far worse, although everyone is different. Good luck whichever route you take
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: