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Dad just diagnosed. Need advice

User
Posted 06 Aug 2021 at 22:37

Hopefully you will feel better in a few days time. Sounds v uncomfortable.

They have put dad on virtual polyp clinic for surveillance. No idea why as there was no mention of polyps on the report. Maybe to be on safe side as he had RT. Macmillan were unsure too.

 

 

User
Posted 12 Aug 2021 at 15:54

The pathology results for dads endoscopy shows "epithelial changes indefinite for dysplasia" in one of the biopsy. He already has Barret's Esphogues.

They want him to up his meds and go back for another endoscopy in January so they can take further biopsies.

If dysplasia is confirmed then i am guessing they treat this, as this is pre cancer cells. Im not too sure what all this means but can't believe something else has come up! Its stressful enough dealing with one type of cancer,  let alone worrying about the risk of another.. although i know many people have multiple primary cancers.

Just feeling crappy today

User
Posted 14 Aug 2021 at 09:12

Originally Posted by: Online Community Member

Hopefully you will feel better in a few days time. Sounds v uncomfortable.

They have put dad on virtual polyp clinic for surveillance. No idea why as there was no mention of polyps on the report. Maybe to be on safe side as he had RT. Macmillan were unsure too.

 

 

Give Dad my regards, it sounds like his problems are worse than mine!

Chin up. Bob

User
Posted 20 Oct 2021 at 21:16

Hello!

Hope everyone is doing well.

I think i totally forgot to post dad's PSA results in August. It was <0.01. Same as the previous one, so that is good news. Next one is in March. Fingers crossed.

He is having another endoscopy in January for the Barrett Esophagus to check if the biopsy still shows pre cancer cells. If so, they will treat it.

He is doing well. Still very active. Hot flushes are still there but the episodes are shorter. 

Day at a time hey!

 

User
Posted 20 Oct 2021 at 23:17

Hi SR12, good to hear from you. Nice PSA result.

Dave

User
Posted 20 Oct 2021 at 23:24

Thank you Dave, hopefully it continues. How are you doing? Keeping well?

User
Posted 21 Oct 2021 at 13:17
Thats good news, my Sigmanoscopy in the 12th Nov - next blood test beginning of Dec.
User
Posted 21 Oct 2021 at 16:45

Yes, I am doing fine. I am glad to say nothing exciting happening with this cancer, which is good. Next PSA December, hoping it is uneventful.

Dave

User
Posted 21 Oct 2021 at 21:53

Glad to hear you are both well Bob and Dave. You both have your next PSA's in December! Please keep us posted with the results. Glad to hear nothing exciting is happening with the cancer lol! 

Bob.. is this the follow up Sigmanoscopy? 

Dad's one showed a slight tear which has healed now so no more blood... For now!

User
Posted 25 Oct 2021 at 22:43

Spoke too soon! Dad said he had some blood from bowels today. Typical hey! He has been straining, so shall monitor it for now. 

User
Posted 02 Dec 2021 at 13:58

Just to let you know, my latest 6 month PSA result today, was 0.25 ug/l Which I think is fine.
The previous one was 0.16.

I hope your dad is doing OK.

Edited by member 02 Dec 2021 at 13:59  | Reason: Not specified

User
Posted 02 Dec 2021 at 21:58
i was going to post on here tonight, then saw your message! Really great PSA Bob yay! I think it naturally goes up a bit once testosterone starts to go on the up, is that right?

How you keeping otherwise?

Dad was okay until he discovered a lump inside his cheek around 3 weeks ago. Had a dentist appointment today. Although the dentist said it didn't look sinister, he has made a referral for a biopsy as 3 weeks is too long.

So here we go again with the worrying etc. Its just too much.

He also has follow up endoscopy in January (got the date amazingly) to check if pre cancer cells still show.

Hot flushes are less and he is still active. Bowel bleeding comes and goes.

Il post once we get biopsy results back. Waiting and not knowing is the worst.

Hope everyone is doing well

User
Posted 02 Dec 2021 at 21:59
Dave you had PSA done?
User
Posted 02 Dec 2021 at 23:46

Hi SR12,

You have prompted me to update my thread as I went for the PSA test today. See the last post.

https://community.prostatecanceruk.org/posts/t23141-Hooray-I-m-off-zoladex--let-s-hope-for-good

 

Dave

User
Posted 03 Dec 2021 at 09:52

Originally Posted by: Online Community Member
i was going to post on here tonight, then saw your message! Really great PSA Bob yay! I think it naturally goes up a bit once testosterone starts to go on the up, is that right?

How you keeping otherwise?

Dad was okay until he discovered a lump inside his cheek around 3 weeks ago. Had a dentist appointment today. Although the dentist said it didn't look sinister, he has made a referral for a biopsy as 3 weeks is too long.
So here we go again with the worrying etc. Its just too much.
He also has follow up endoscopy in January (got the date amazingly) to check if pre cancer cells still show.

Hot flushes are less and he is still active. Bowel bleeding comes and goes.

Il post once we get biopsy results back. Waiting and not knowing is the worst.

Hope everyone is doing well

A change of weather to colder can cause Mouth Ulcers, side effect of colds & chills, too.
Just keep clear of any South Africans - though I'm hoping that is all a storm in a tea-cup. 

User
Posted 03 Dec 2021 at 22:17

Haha! That made me laugh! i really hope we are not heading for any major restrictions. Dentist was worried about length of time the ulcer has been there. Anything over 3 weeks is an urgent referral.. biopsy. I hope it just goes down.

User
Posted 04 Dec 2021 at 17:11

Originally Posted by: Online Community Member

Haha! That made me laugh! i really hope we are not heading for any major restrictions. Dentist was worried about length of time the ulcer has been there. Anything over 3 weeks is an urgent referral.. biopsy. I hope it just goes down.

You have to watch Dentists, they don't need many excuses to extract £65 for a NHS filling - trying to make up income lost during the Lockdowns.... Even more, if your private.

User
Posted 04 Dec 2021 at 21:49

Yeh, i was charged £110 for an NHS white filing! Daylight robbery!

User
Posted 18 Jan 2022 at 23:08

Hello,

Hope everyone is well. Thought i would post an update.

We all tested positive for COVID a couple of weeks ago, including dad. He is doing well but is suffering from shivers and leg pain. Tomorrow will be 7 days since positive test so hoping symptoms start to fade. Due to this his endoscopy was cancelled and will be rearranged.. bummer as they are checking for pre cancer cells but hopefully they can book him in again in 2 weeks time.

Regarding mouth ulcer, we saw a consultant privately, he didn't think it was anything to worry about when he examined it, however has recommended a biopsy. We were going to get this done after endoscopy. We will decide what to do first once we get endoscopy date!

Dad has PSA blood appointment mid February. I have read getting COVID infection can show an increase in PSA. Not sure if this is accurate information and if this will be the case 4 weeks post infection. Does anyone know?

COVID messed up a few important appointments unfortunately. The symptoms are not too bad with the new variant. Very much like a bad cold. Not bed bound though. I've had worse flu's!

User
Posted 19 Jan 2022 at 10:48
I hope you are all "Triple jabbed" as "beleaguered Boris" would say - so far, to the best of my knowledge, I've managed to avoid catching Covid, of any sort!. Been keeping my head down & not too much socialising - Sunday lunch at a cafe, is about it.

Good luck to Dad.

“Politicians are like diapers, they need to be changed often, and for the same reasons.”

-Mark Twain

User
Posted 22 Jan 2022 at 21:32

Hi Bob!

Hope you are keeping well. 

COVID symptoms were not too bad for us. Thankfully we all recovered. All negative now! Dad has pain in lower leg, which started once he got COVID. 

Endoscopy now 14th February. Unfortunately no date earlier. 

Hopefully wont effect PSA.

 

User
Posted 23 Jan 2022 at 15:29

Originally Posted by: Online Community Member

Hi Bob!

Hope you are keeping well. 

COVID symptoms were not too bad for us. Thankfully we all recovered. All negative now! Dad has pain in lower leg, which started once he got COVID. 

Endoscopy now 14th February. Unfortunately no date earlier. 

Hopefully wont effect PSA.

 

Daily 500mg Cod liver oil, can help with Aches & pains & prevent bugs as well.
I have it, as I hate the taste & smell of fish - but know the oil is good for you as you age.

User
Posted 23 Jan 2022 at 19:40

Took him to walk in today as the pain was too much. The GP there ruled out DVT or anything like that but did say he needs an MRI to rule out prostate cancer spread to bones. Obviously this has panicked us the idea didnt even cross our minds.

Can prostate cancer go straight to side of knee?

 

Il call Macmillan tomorrow to see what they say.

His next PSA is due mid February. Can PSA increase that quickly in 6 months? I dont know what to think now 

Any advice please would help.

User
Posted 24 Jan 2022 at 21:11

Originally Posted by: Online Community Member

Took him to walk in today as the pain was too much. The GP there ruled out DVT or anything like that but did say he needs an MRI to rule out prostate cancer spread to bones. Obviously this has panicked us the idea didnt even cross our minds.

Can prostate cancer go straight to side of knee?

 

Il call Macmillan tomorrow to see what they say.

His next PSA is due mid February. Can PSA increase that quickly in 6 months? I dont know what to think now 

Any advice please would help.

As your body, wears out - the aches & pains normally, get worse - any previous activity, work, etc - will be a factor - as will be old injuries & bone breaks. I believe your dad is older than me (73) so that is a factor, too.

User
Posted 24 Jan 2022 at 21:50

Thank you Bob. Yes he is 79. I think this may be an old injury that has been triggered. He does a lot of walking, sit ups, squats etc! Went to A&E today (nightmare experience) but he got seen. Doctor there said he has a slight temperature so gave antibodies. Hopefully that may help. So much going on. Spinning plates!

User
Posted 25 Jan 2022 at 04:00
Side of knee sounds like classic ACL rupture, though I guess the precautionary principle always applies. Squats can certainly trigger an ACL incident, as I can attest from personal experience. If it is an ACL prob. he might find arch supports will help and easing off on the squats for a bit could be useful. I'm 74.

Jules

User
Posted 25 Jan 2022 at 09:21

Originally Posted by: Online Community Member

Thank you Bob. Yes he is 79. I think this may be an old injury that has been triggered. He does a lot of walking, sit ups, squats etc! Went to A&E today (nightmare experience) but he got seen. Doctor there said he has a slight temperature so gave antibodies. Hopefully that may help. So much going on. Spinning plates!

I expect you mean, "Antibiotics" about all they seem to give anyone, if in doubt.
Yes A&E a place to avoid, go in with one problem & come out with another + Omnicron - if you don't already have it!

User
Posted 25 Jan 2022 at 13:10

Thank you so much Jules. Il get some arch support, cant do any harm. The GP has arranged an x-ray for next Thursday. Bit fast for NHS! Although, i think the x-ray departments work quickly. Hopefully they will get to the bottom of this as at the moment he is bed bound. Very difficult for him as he is always out.

 

Opppsss yes Bob, i mean antibiotics! Was a long day. Antibodies would also be good in this day and age!

GP also prescribed Tramadol. Not sure of the spelling. Apparently very strong!

User
Posted 25 Jan 2022 at 19:51
Yes, a strong pain killer - with all the usual side effects of pain killers, inc Constipation.
User
Posted 25 Jan 2022 at 22:13

Yep very much suffering from constipation. Laxatives not working. Will try dry fruit tomorrow. He is suffering and feeling sorry for himself at the moment! 

I did some research, symptoms all sound like ACL rupture. Scan next Thursday. Hopefully nothing to serious. Tramadol doesn't seem to be working either!

User
Posted 25 Jan 2022 at 23:08

Originally Posted by: Online Community Member

Yep very much suffering from constipation. Laxatives not working. Will try dry fruit tomorrow. He is suffering and feeling sorry for himself at the moment! 

I did some research, symptoms all sound like ACL rupture. Scan next Thursday. Hopefully nothing to serious. Tramadol doesn't seem to be working either!

Yes, if it is ACL there's often that twinge/sharp localized pain as a warning that it's teetering on the edge. When it really ruptures it's quite a few steps up in pain and restriction of movement. With ageing, feet tend to flatten and gait changes to a more splay footed style, which puts strain on the ACL. You should be able to find a good insert at a chemist, though some of them are more into appearance than function.

 

Jules

User
Posted 26 Jan 2022 at 08:18

He describes the pain as stabbing and at times its like the pain is throbbing. He is generally very active and walks around 2hrs a day, fast walk. Exercises with weights etc. Im sure this is an underlying issue which possibly COVID infection has triggered. He started to get the pain a few days before testing positive. Each day the pain is getting worse and unfortunately the painkillers are not working. Lack of sleep is bothering him a lot.

User
Posted 26 Jan 2022 at 17:20

Originally Posted by: Online Community Member

Yep very much suffering from constipation. Laxatives not working. Will try dry fruit tomorrow. He is suffering and feeling sorry for himself at the moment! 

I did some research, symptoms all sound like ACL rupture. Scan next Thursday. Hopefully nothing to serious. Tramadol doesn't seem to be working either!

Wilco's cheapo Senna, I find works better than the well known brands. - Works for me! But I'm not on a strong pain killer thankfully.

User
Posted 26 Jan 2022 at 20:34

Dried fruit helped today. Still in a lot of pain and struggling to walk. Im surprised pain killers are not kicking in!

User
Posted 26 Jan 2022 at 22:25

Yes, if it's a badly torn ACL they are extremely painful and pain killers don't seem to do much. I had a minor tear which slowly healed itself over a few months but my partner had a more serious rip for which she had an arthroscopy. The arthroscopy was an almost instant fix, though that's not always the case. Drs are more reluctant to go for surgery/arthroscopy now than they were a few years ago.

Sharp stabbing pain on the inside of the knees sort of just behind the kneecap?

I was prescribed enema type glycerin suppositories to use before some scans while my PCa was being figured out. I used them once or twice when I had temporary constipation. I think you can buy them without prescription, even if inserting them is a slightly odd experience.

Jules

Edited by member 27 Jan 2022 at 01:06  | Reason: Not specified

User
Posted 27 Jan 2022 at 22:08

Yes, that is exactly the sort of pain he describes. How did you both deal with the pain? Painkillers are not working and he can't do basic stuff like get on and off loo. We are wondering if we should just pay to see a private consultant. Who would we see? Orthopedic or Rheumatologist? Really good news you guys are better. Sounds like a nightmare.

Dry fruit seems to have solved the constipation issue for now. Everyday is different though.

User
Posted 27 Jan 2022 at 22:55
Painkillers? Difficult question. There's stuff like Oxycontin and other opioids but they can be addictive and cause constipation. Even then they're probably not going to be enough. Both my partner and I were still able to move around and function normally, despite the pain but I think it depends on the amount of damage.

An orthopedic surgeon would be the right choice. I'm in Australia so our health system is different to yours. If there's going to be a long delay for public health, maybe you'll have to go private.

Jules

User
Posted 28 Jan 2022 at 09:41

Thank you Jules.

Hopefully the GP will call this morning. 

I don't really understand the difference between an Orthopedic Consultant and Rheumatologist. Have googled it but still not understanding it.

I would love to be in Australia!

User
Posted 29 Jan 2022 at 22:36

Dad lost his balance and fell from the bed on Thursday night so we booked a last minute appointment with an orthopedic surgeon for Friday night. X-ray shows slight wear and tear and grade 1 fracture, which he says would not cause this much pain. MRI was this afternoon, results on Tuesday. He said that will show up everything. He examined the knee and said it wasn't hot to touch or swollen so difficult to tell. He thinks it could be, inflammation, torn ligament or prostate cancer spread into bones. Last PSA 6 months ago was 0.01. can mets happen so quickly? Unless its another cancer? Which it prob isnt. 

None of the painkillers are working so now he is on liquid morphine. 

User
Posted 31 Jan 2022 at 01:26

Sorry to hear about this added problem for both of you. The range of possibilities suggested by the surgeon couldn't be much broader! All strength to both of you to deal with it. Waiting for definite diagnosis is always hard, as you well know.

Jules

User
Posted 31 Jan 2022 at 07:20

Thank you Jules. I didnt find the consultant very helpful to be honest. He didn't even ask about medical history. I was telling him everything. Hopefully MRI results will be in by tomorrow. Fingers crossed. Dad has been keeping his leg straight since yesterday morning, he says this really helps. Morphine is also working. Hopefully it isnt anything serious. His PSA test is due next Monday and endoscopy Monday after!

User
Posted 31 Jan 2022 at 20:56
Will the MRI scan show up any cancer in the knee if it's present? I'm not familiar with what MRI scan can pick up in zones other than the prostate though I'm sure others here will know.

Jules

User
Posted 31 Jan 2022 at 21:51

Yes, will pick up abnormal stuff and everything in the knee. Had it done Saturday. Results should be tomorrow. Called Macmillan again today, they are saying chances of prostate cancer spreading to knee is extremely slim. Got PSA done today as well. Results in a few days. Fingers crossed. Hopefully it is a tear or reactive arthritis due to COVID. Keeping legs straight has stopped the throbbing pain.

User
Posted 01 Feb 2022 at 09:11

PSA results are in 0.02. In August last year it was <0.01. the < has gone and gone up. What does this mean? All treatment ended December 2020.

User
Posted 01 Feb 2022 at 11:27

Also infection marker is really high, should be under 5, his is 45. This could explain the knee issue. HB levels have dropped again to lowest level 119. Is this all related?

User
Posted 01 Feb 2022 at 12:12

Hi SR12, I've been keeping an eye on the posts as usual, I just haven't responded to most on this thread as I don't have enough experience of all these health issues.

I can tell you the PSA is nothing to worry about. His hospital is testing to two decimal places mine tests to one. My last three all six months apart have been <0.1, 0.2, 0.1 so mine are roughly 5 to 10 times higher than your dad's, and mine would have to be 10 times higher than they are to be of any concern.

Remember he still has a prostate and if it is making PSA as great as 2.0 it will not be considered a problem.

I'm sorry about your dad's other health issues. You may remember one of my first posts on this thread was the recommendation to take up motorcycling or sky diving. Your dad's problems are all to so with getting old, and there is no cure for that, yet.

I think your dad's case does highlight a decision people can make about treatment, and before I say anymore I should point out this decision still has no right or wrong answer.

If your dad had have opted for no treatment, he would probably have got most of these subsequent problems anyway, but he would have almost certainly attributed them to advancing cancer even though they are not. He would have been spared a few minor side effects of treatment. He would probably have got voiding problems which would have been genuine cancer problems. He may have died an unpleasant death from cancer at about 85.

By opting for treatment he has got the subsequent problems, but they are almost certainly not related to cancer or side effects of treatment (save for a few like hot flushes). He now is worried the problems are either advancing cancer (which they aren't) or side effects (which they aren't) he probably will not develop voiding problems or die an unpleasant death at 85 from cancer, he probably will die an unpleasant death (they always are) at 85 of something else.

So certainly no right answer or wrong answer to the treatment question, for someone diagnosed with a slow cancer in their late 70s. 

Dave

User
Posted 01 Feb 2022 at 22:41

So nice to hear from you Dave. Your posts always bring a smile to my face. Thank you for the message and for the reassurance. Everyone here is so supportive, id be so lost without this group. I do remember the motorcycling and skydiving post, it was very early on when dad got the diagnosis! I also try very hard to remember that worrying doesn't change the outcome - although i always end up worrying even more! 

Your PSA levels are great! MacMillan called back and gave the same advice too. Said nothing to worry at this point.

MRI results show dad has Acute Bone Edema. Basically fluid has got inside the bone. Can be due to a number of reasons. It all happened when he got covid so strong possibility that the infection caused inflammation which then caused this. Only cure is rest, painkillers and not to put weight on that leg. Will be very difficult for him to rest for 3 months plus! He was active all through out cancer treatment, so he is shocked that this has made him bed bound. 

The drop in HB levels i think is coz he changed iron tabs to a lower dose due to constipation. He will switch back again.

I would never have thought about health issues being related to cancer before but since prostate cancer, i keep thinking everything is related to that. It also doesn't help with consultants also wanting to "rule out mets"

Thank you to all for the reassuring messages and for keeping me going. Hopefully i can now chill for a few days.. until the next issue. Lets hope there is a cure for aging, soon! I need it after all this stress!

User
Posted 02 Feb 2022 at 05:42
Excellent psa result as Dave says! The "<" is a "less than" symbol which with PSA measuring equipment means it's at, or below the minimum level their equipment can measure. Given your dad has been off Zoladex for about a year [?] now, his testosterone might be on the rise again, which will probably cause a quite normal rise in PSA. In the midst of everything else you've been dealing with, has your dad had any testosterone levels measured at the same time as his PSA blood samples?

Sorry about the false lead with my suggestion of an ACL problem. The Edema is obviously not good but better than bone cancer!

Jules

User
Posted 02 Feb 2022 at 09:59

Oh no please dont apologise Jules. We honestly thought it was a tear because of the pain level and location. Never even thought of edema! Very glad its not cancer. Dad is annoyed that he can't go for his 3 mile walk for a while! We were planning to get testosterone levels checked with this PSA but it happened so quickly with other bloods that it totally slipped my mind. Il make sure we check it when next PSA is due. Onco will call 1st March.

Been a stressful few days for sure. Really appreciate your support. This group is amazing!

User
Posted 17 Feb 2022 at 15:42
Hello!

My dad 77y has just been diagnosed and recommended radiotherapy. Have been reading about the side effects. Also read about your dad RT experience and how he felt at some points after it.

Hope he is doing well!

Wanted to ask how long his urinary frequency lasted after the radiotherapy. Does he have any long term side effects?

How does he feel about the whole RT experience in retrospect. Any regrets?

I am asking because the second opinion we were given was active surveillance (gleason 7( 4 + 3), Last PSA 6.77, but previous ones 8.56 and 8.02, T2b). The consultant was talking about quality of life and regrets.

I am sick with worry and my head is spinning with so much reading.

Tina

 
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