Dad just diagnosed. Need advice

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

User

Posted 17 Feb 2022 at 22:23

Hello Tina,

Sorry to hear about your dad's diagnosis. I totally understand what you must be going through. I was exactly the same when we were first told. This group is amazing. Honestly, its been an absolute lifesaver for me and my family. I had so many questions and also did so much reading. My head used to hurt as well! The people on this group are very knowledgeable. Would be a good idea, if you haven't done so already, to start your on thread so that everyone can read it and support. I will defo try and answer the questions below too!

My dad had 6 months of hormone therapy and 20 sessions of radiotherapy. He was actually OK with both. The only side effect, which really bothers him and still bothers him, are the hot flashes, which are defo getting less but he hates them. During radiotherapy he was getting up around 5 times a night to go wee, however this has significantly reduced to about 2 times a night now. Not sure how active your dad is? Being active, doing exercises does help. My dad got a bit tired from treatment but kept up the walking, which helped him a lot. He also got a bit constipated but that was resolved once he upped fibre and fruit intake.

My dad was T2C at diagnosis, he was not offered active surveillance, however i am sure some other members on here will be able to answer that question. This is where it would help to set up your own thread for sure.

I know it seems so scary now, all the unknown and not knowing what to do for the best. We were so scared initially that my dad even considered doing nothing, but we did a lot of research and reading on here and realised that it may not be so bad. A lot of members on here have been as ok as they can be with the treatment. We were surprised how OK my dad was. He was driving to and from RT by himself etc.

I hope this has helped a bit. I would say do research, start your own thread on here and see what options you have and what your dad feels comfortable with?

My dad had a knee issue recently, which stopped him walking, but recently he had a steroid injection which has 99% resolved the pain! He should be back to walks after another 2 weeks or so.

Feel free to ask questions, or just write on here. We are all here to support eachother.

I worry a lot too, but i am trying to follow a fellow member, Dave's, advice.. worrying wont change the outcome....

User

Posted 17 Feb 2022 at 22:33

And i should add, no regrets from dad. He was surprised about how well he coped with the treatment. We thought it was going to be a lot worse, however, everyone is different and not everyone gets the same side effects.

User

Posted 22 Feb 2022 at 10:29

Thank you so much for responding!

Glad to hear your dad is well and not in pain! Hopefully he will be able to walk soon!

I have been reading a lot.

I feel my dad is scared of spreading and wants to get it done. He is active, walks and works in his garden and generally well.

However he had TURP performed in 2016 and this puts him in greater risk of side effects like urinary incontinence. Does your dad have any or just more frequently going?

Did your dad have a rectal spacer before the RT and did they use fiducial markers during his mapping session?

How long did it take him to recover after the RT?

I am meeting today an oncologist to discuss further and then decide the course of action.

Yes, I am trying not to go mad and worry too much, cause it's not helpful, but it's not easy.

Thanks again!

User

Posted 23 Feb 2022 at 08:27

Tina,

it's not possible to answer some of your questions until there's more information from the oncologist but with a Gleason score of 7 and a psa below 7 there is every reason to anticipate a good outcome.

Urinary incontinence is unlikely to be a debilitating problem in the long term with radio therapy and hormone therapy.

A spacer like Spaceoar might be recommended but in most cases it's not needed. While they can help in some situations, they aren't without risk. Don't feel you have to spend vast amounts of money for this and only choose it if it seems to be absolutely necessary.

Fiducial markers, like gold seeds, are a help with locating the prostate accurately for each round of radiotherapy. It's probably a good sign if your oncologist recommends these.

RT is definitely tiring, though once your dad starts on his treatment the stress of not knowing what the future might bring changes into managing life as it is. More relevant will probably be the fact that he'll have to deal with hormone therapy for some time after the RT. Loss of libido, fatigue, hot sweats and mood swings are characteristic changes. They inevitably vary from person to person, though with time they can be managed ok.

For comparison, I'm 74, had a Gleason 9 with mets in nearby glands. Had RT followed by HT and am now about a year past RT and half way through HT. I'll be glad to get out the other end of this process but my ongoing psa levels have been extremely low and the future looks good.

I suggest you start your own thread, even though I didn't follow my own advice.

Jules

User

Posted 23 Feb 2022 at 09:46

Glad the injection helped - an old workmate of mine, had a similar problem with his arm joint - same treatment as your dad's worked for him, too.

User

Posted 23 Feb 2022 at 12:19

Dad is 100% able to walk now, without a stick! Unbelievable. Soo pleased. The injection defo worked. The Consultant thinks COVID infection caused inflammation which caused the edema. Time will tell if it returns. Hopefully not.

Dad didn't suffer much to be honest from RT or HT. He only had 6 months of HT in total. Frequency of going loo is less now. He gets up less at night. Hot flushes are there but since he has stopped using an electric fan, he feels they are more manageable. Evening primrose helps at times.

Sounds as if your dad is active too, I'm sure he will be fine. My dad didn't let the tiredness from RT get to him, he carried on walking etc.

What did the Onco say?

User

Posted 08 Mar 2022 at 22:04

Hello!

Update on dad. Not on prostate stuff as that seems to be OK for now, fingers crossed.

He had the follow up endoscopy as first one showed possible pre cancer. The endoscopy report did not show anything to worry about. They took around 25 biopsies. After 3 weeks of waiting for the results, i emailed the endoscopy department today. They emailed back to advise an outpatient appointment will be made where results of biopsy will be discussed. Now this has me major worried.. Dave.. i am trying sooo hard to tell myself that worrying doesn't change the outcome! I just can't help thinking why they want to speak/see him. He has been under there care for over 30 years now, they always write with results. I am hoping best case, they have definite for pre cancer and want to discuss. Anything but another cancer...

Just wanted to share!

Hope everyone is keeping well.

User

Posted 09 Mar 2022 at 19:07

Hi SR12, glad the prostate cancer is under control, and most other health problems are doing ok. You won't be too surprised to hear that I can't see any point in worrying about another set of test results, and that I still advocate skydiving as a good way to avoid a long slow boring death.

Dave

User

Posted 09 Mar 2022 at 20:18

Not surprised Dave and i always think about your wise words when im totally over thinking. No news from them yet. I know NHS have a backlog but i wish they would just tell us ASAP. Waiting is soo difficult.

I've done 2 skydive's.. highly recommended!

How are you keeping?

User

Posted 09 Mar 2022 at 20:34

I'm doing very well thanks. I know winter isn't quite over but looking forward to a summer hopefully without COVID restrictions. The oncologist is bored of seeing me and told me to come back in a year. I like it when oncologists aren't interested in you, it is so much better than when they are interested in you.

Dave

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