Twelve months on

User

Posted 28 Jul 2019 at 19:53

Hello all

im new to this website and I apologise in advance for any mistakes that I may make.

I was diagnosed with prostate cancer June 26th 2018. Everything moved on very quickly from biopsies to full non spearing operation on October 22nd 2018. Including the hormone treatment from November 2018 to March 2019. Moved onto radiotherapy on April 10th 2019 for 30 sessions through to may 23rd. Now waiting to go to hospital for the radiation tablet treatment and scans on the 15th August , to investigate further problems. I hope to receive some advise from you lovely people regards to the following problems that I’m going through at present.. from the operation, I started getting very bad pains and cramps in both legs, the urologist just said this is normal because of all the lymph nodes being removed. I’m also experiencing problems in my bowels, struggling with stool movements chronic pain when passing also losing blood and blood clots. Excruciating pains when passing urine. I’m struggling to sleep at night due to pains in my hips and pelvic areas and down my legs also bad cramps in my calf’s and hamstrings. The hospital have tried many different medications, but nothing is helping. If someone is experiencing same or similar problems I would be pleased to hear from you. Thank you

User

Posted 29 Jul 2019 at 08:52

Hi harvey62,

Sorry to read about the problems you are having. Restless legs I can identify with plus problems sleeping.

I have a few questions which might help others answer your post.

What was your pre operation PSA and biopsy Gleason?

What was your post operation histology?

You went on to post op hormone therapy followed by radiotherapy. Why was this?

(PSA remained high, post op histology showed spread?)

Have you been tested for a urine infection?

Passing blood clots when moving your bowels needs to be investigated.

I am not sure what you mean by a radiation tablet.

Sorry there are so many questions but the answers will help.

Best wishes,

Ido4

User

Posted 29 Jul 2019 at 09:26

Also, what stage were you at diagnosis (TNM)?

Rather than post all the info here, post it in your profile, so you (and we!) can refer to it easily as we go along. If you 'mouseover' anyone's name, you can see the kind of thing that people include. Detail is good!

Thanks,

User

Posted 30 Jul 2019 at 10:18

I see from your profile you had a positive margin hence the adjuvant radiotherapy to blast any remaining cells. I had salvage radiotherapy in 2017 after biochemical recurrence, prostatectomy 2015. HT for 2 years three months or so. I have issues with bowel urgency especially in the morning, radiation proctitis was diagnosed after a sigmoidoscopy in 2018. I do get occasional bleeds but I think that is due to haemorrhoids.

I am not completely continent.

I think you need further investigations on your urinary pain and bleeding.

A sigmoidoscopy is probably best to check the first part of your colon and rectum. These are the areas most likely to suffer from collateral damage with pelvic RT.

You’re latest PSA is great, really low.

Ido4

User

Posted 31 Jul 2019 at 12:50

Hi Andrew

I’m Neil ( harvey62), thank you for taking the time to send a message.

I agree with you 100%,

going back to October ( my operation), since the op I’ve been struggling enormously, no one has come forward with any help. I’ve been the one that’s been pushing for answers. When I go to urologist doctors for help, they immediately dismiss me and tell me to get help from the oncologist, so when I do that, the oncologist will tell me to go back to the urologist!! In the meantime I’m struggling with pain.

I’ve found from this last 9 months, nobody wants to take responsibility for anything.

radiotherapy. The radiographers were fantastic, every day asking how I was feeling and giving detailed advice as to what will be happening from each stage of the therapy. At first I thought I would sail through the radiotherapy, then at the 18th session, it all hit me like a juggernaut! From my stomach down, the pains were excruciating. The radiographers explained that the radiation was interfering with the tissues from the operation, also the bladder wall would become slightly thinner and narrow and my bowel would be slightly damaged, especially at the front rectum. They helped as best as they could, giving me creams and gels until I got properly looked at by the oncologist specialist. But when I went to see the specialist they would say that the problems I were experiencing was nothing to do with radiotherapy!! I would therefore say, what is causing these problems? They would say we don’t know, go to urologist they will help!!. So no one will take responsibility. NHS what a mess.....

User

Posted 31 Jul 2019 at 19:17

Neil

Were the blood and clots passed in the urine or bowel or both. What are your water works and bladder control like.

Thanks Chris.

User

Posted 31 Jul 2019 at 22:56

Hi Chris

sorry late replying.

I experienced blood in my water works when I had the catheter removed, I accepted this at the beginning but it continued on and off. I was told by my doctor that it could be an infection, so after medication I still got the blood. It got worse when I was having radiotherapy so now I’m waiting for the next stage of tests and scans to see what they find.

The blood clots are from my bowel movements, again since the operation and up to present. Again will see when further tests and scans are done.

will keep you informed.

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