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Newly diagnosed swollen ankles and groin pain?

User
Posted 18 Apr 2016 at 18:37
Hi
I am hoping someone can help me my husband was diagnosed with prostate cancer in March with a Gleason of 10 his PSA level wasn't that high and we were told the type of cancer he has is aggressive and doesn't always have a high PSA he's had bone scan which was ok CT scan ok MRI showed it had spread but only just outside the prostate!! He's been started on hormone treatment and is waiting to see an oncologist about radiotherapy my concern is that his ankles are swollen and he has pain in the groin area both sides could This be a symptom of the cancer or side affect of the medication sometimes the pains so bad he struggles to move his legs to elevate them!! My husband was 60 in Feb xx
User
Posted 18 Apr 2016 at 20:34

Hi Debmar


sorry to hear the problems you describe. I really do think you're best getting to see your GP to discuss this. From the little information you've given about the symptoms, there could be a variety of reasons why this could be happening. If the pain as so bad to prevent simple movements, it should be something you discuss with a health professional. Trying to make diagnoses online is fraught with difficulty, even if you're a specialist. 


The problem is obviously creating a lot of distress for you both - make an appointment with your GP, rather than hoping that the right person will come along on this forum to give a diagnosis. Someone here may say something that puts your mind more at rest, but you need a plan , not an opinion. 


You'll get some excellent support here, but I really feel this particular situation is best dealt with in a timely manner by your GP. 

User
Posted 18 Apr 2016 at 20:45

Welcome, Debmar.
Sorry about the reason you are here. It is not fair to have that diagnosis at 59. Very tough on you.
I agree with Walnut: see your GP for an opinion (and probably some pain killers).
You might also speak to his clinical nurse specialist, and/or the staff attached to Prostate Cancer UK.
Best of luck, and keep us informed.
Henry

User
Posted 18 Apr 2016 at 21:07
Hi
Thanks for answering we are seeing the GP he's had various blood tests which gave come back ok he's been given Oramorph and tramadol for the pain I was just wondering if anyone else had the same symptoms? Or even if it is connected to the cancer? We are both very scared he lost his younger brother in Feb from stomach cancer!!
User
Posted 18 Apr 2016 at 23:35

Swollen ankles tell you that there's a build up of fluid there- it's not being returned back into the general circulation as effectively as it is normally.


Swelling at the ankles can happen because of many things: A problem with the circulation- because the heart isn't pumping as well as it used to, or because of the way that the kidneys filter the blood. It can happen because certain types of medicines have been changed. It could be related to obesity, we don't know. There are other reasons too, but listing them will not change what you should do.  


In order  to find out the cause of  the swelling, speak with your  GP. You've said they have prescribed strong painkillers- for pain. But did you mention the swollen ankles? To work out the cause, the GP  will have to ask specific questions and the answers you give to these questions will help with diagnosing what the underlying problem is.  But unless the GP knows what your specific problem is, you may be at cross purposes.  It might sound like I'm teaching you to suck eggs here, but we know nothing of your husband's health before this diagnosis. For example, if he had episodes of pain beforehand, the GP may have given your latest painkillers because they assumed it was for an exacerbation of an old pain. Similarly, he may have had a tendency to swollen ankles which was hidden because he was pottering about and is more evident if he's sitting for longer now.


Think about what you could be doing to encourage your husband to manage the swelling more effectively until you clarify things with the GP.  Has your husband taken to his chair more since the diagnosis because he's fearful? If you sit more, your circulation will suffer. Someone pottering about will be working the muscles in the legs, which act as pumps to help the resolution of any mild swelling. We all know people who complain that their legs swell if they're on their  feet all day - what do they do? - they put them up for an hour or two. But if you put your feet up for hours and stay immobile, you can have swelling as well. So the little and often approach to activity often helps.


He's now taking strong painkillers which probably zonk him out and reduce his enthusiasm for  movement, so time any exercise activity to when he's at optimum pain AND energy level to get things moving. Don't lie with the legs straight out in front elevated - get a small bend in the knee with a cushion- It helps the circulation behind the knees. Get him to circle the ankles for 30 seconds every hour - especially the pulling the foot up bit. Get him to squeeze his bum cheeks together.  All this sort of stuff is just maintenance whilst you sort the underlying stuff out.  Your hips, knees and ankles are joints that are designed to move. if you stay still because you're fearful and not even doing any of the stuff I've listed above, you'll end up like a gate with rusty hinges that doesn't move easily-  and then take every creak to mean something sinister.

User
Posted 19 Apr 2016 at 00:04

The problem is Debmar that once someone has been diagnosed with cancer, we risk assuming everything that happens is linked to that diagnosis. It might be, but it might not.

Since it seems to be one of the rarer ones, it would be really helpful to know which type of prostate cancer he has been diagnosed with - do you have that written down anywhere?

I would want to know whether the GP has checked his heart. If his heart is okay, a call to the nurse specialist (if you have been allocated one? If not, then the consultant's secretary) might be more useful than another conversation with the GP - general practitioners are so called because they practice general medicine and yours may not know a lot about the prostate or side effects to the lymph nodes, for example. Quite a lot of men with prostate cancer get lymphodema, because the nodes in the groin are not working properly.

Call the nurse specialist and/or see the GP again. If there is no nurse specialist, call the specialist's secretary.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Apr 2016 at 18:57
Thanks for the information what you said makes sense I've talked to him about trying to be a bit more active so he took the dogs for a walk but was in quite a lot of pain when he came back.
It seems like he doesn't want to talk about it if we don't talk about it it will go away!!
I've been writing questions down to ask when we go back to urology on mon for his injection all we know is he has prostate cancer Gleason 10 spread but only outside the prostate that's it what questions do you think I should be asking? I'm so pleased I found this site there's a lot of useful information!! x
User
Posted 20 Apr 2016 at 19:41

Hi, Debmar.
(Just noticed my previous error: he was 60 in Feb, not 'is 60 in Feb'.)
Call me sexist, but I reckon men are more likely than women to hold the assumption you pin down - that if you don't talk about it, it will go away, a.k.a. head in the sand approach. It's great for him that you are there to help you both move towards dealing with it. Meanwhile, I am sure you will respect his apparent slowness in, and resistance to, accepting the diagnosis. It is a mark of how frightening, angry-making, and potentially overwhelming this feels to him. He will get there ...

As well as being sure to get across to them all the symptoms you and he have noticed, be sure to ask whether any investigations could help work out what's going on. Ask if it could be anything to do with his heart's functioning, and his circulation. Ask what could help with the symptoms that bother him the most. I mentioned analgesia before. Try and find out from him what bothers him most, befor Monday!

I think a really good question for near the end might be to ask the doctor: "What are your main concerns about my husband's case?" or, after the doc has made some suggestions: "Is there anything else we all can do that might improve his quality of life?". These are challenging questions, for all parties present, but they might help the doctor open up to you about their view of the situation. Another version might be: "If you wanted him to have the best possible treatment - if he were you brother, for instance - is there anything else that should be done or not done?"

Reading over that, they could be questions you might ask your husband?!!

Good luck with it.

Henry

User
Posted 20 Apr 2016 at 20:31

Definitely ask what type of prostate cancer it is, and write down the answer. Some of the rare ones need a completely different treatment regime and it will help you to understand what is happening as time goes on, especially if his journey is very different to most of the ones that you will read about here or in the books, pamphlets, etc.

You could ask where exactly they think the spread is, 'just outside' the gland isn't very specific.

I would also make sure the specialist is aware that he is taking oramorph.

And finally, ask when he is going to get an onco appointment - I would be a bit p*****d off at how long it is taking.

If the Monday appointment is for his injection, it might be with the nurse rather than the urologist. The nurse should be able to give you details about his diagnosis but possibly won't be able to answer all the questions.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Apr 2016 at 21:22
Hi
It didn't seem that his cancer was rare the way they spoke about it the consultant was saying that more and more they are getting men who don't have an high psa we were lucky our GP didn't originally send him to urology it was when we went back three months later as he was still going to the toilet a lot we saw a different GP who said though it wasn't high it was above normal so she said to make sure everything is ok she would send him!! His oncology appointment is 3rd May seems we have been waiting ages!! 😒 thank you for your help I will ask the questions on mon and see what they say!! xx
User
Posted 20 Apr 2016 at 21:31
Haha he nearly was 59 if they had sent him when he originally had the bloodtests he would of been 59 men are very good at burying their heads women need to know what's happening when why and how!! Unfortunately my husband isn't able to work as he climbs building and maintaining mobile phone masts ....thanks for the input!! x
User
Posted 20 Apr 2016 at 21:33

Originally Posted by: Online Community Member
Hi
we were told the type of cancer he has is aggressive and doesn't always have a high PSA


 


Sorry, I was basing my comments on this. Still worth checking though that he does have adenocarcinoma and not one of the others. There are a couple of rarer types that are very aggressive and produce very little PSA. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Apr 2016 at 21:44
Hi LynEyre
I didn't know there were different types it's all so confusing....when we had the meeting for the results I think I was just so relieved at that point that they didn't say it was terminal everything happened so quick the bone ct and MRI were done in days it was all so scary!! x
User
Posted 20 Apr 2016 at 21:55

There are at least 27 different ones :-(

Life does settle down again and you will find your new normal.

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