When should we worry?

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Hi

I guess I am looking to put our minds at rest and I wondered whether anyone can help after the wonderful and encouraging words you guys have provided already.

It is hard to put into words, but my poor husband felt "funny" earlier and started panicking that this was the start of the end.

His head felt funny and his nose was all blocked up and he really gave himself a scare I think.  I tried to reason with him that surely PCa wouldn't just cause him to "drop" suddenly?

He shared his fears and it seems like every time he feels anything going on in his body, he thinks it is the beginning of the end.  I suggested that we ask the oncologist at our first appointment  on 2nd August if there are any particular worrying signs that we should be aware of that would necessitate going to hospital or anything like that? Is this right do you think, or is anyone aware of what we should look out for?

I am sorry if this seems like a silly question, but I am bereft and just want to help him see or realise what we do and don't need to look out for? It is all still so new and raw just now.

I am sure that when we are further into treatment and we can see it working (hopefully), our panic will settle somewhat and we can look forward to living on this new path.

Thank you for reading.

Amanda

  • Hello Amanda ( 

    That's the problem with cancer - you have no idea what it's doing and have to trust your team and the scans and tests. You cut your finger, you put a plaster on it and you see it get better.  Cancer - well it's there but!!

    As you know I an on Hormone therapy and have received a dose of Radiotherapy. I have had my last HT injection and am now on "Self Service" monitoring. I am under my hospital (The Christie Manchester) and the list of things I have to watch out and report are:

    Bladder and Bowel problems.

    New Bone Pain lasting more than 6 weeks

    Unplanned weight loss  (I wish!!)

    In all honesty it's probably just (dare I say it?) old age and changes to his lifestyle.

    IF anything persists - it's off to the GP so keep an eye on him.  Remember he's a man and if we get anything boy we get it bad!!

    As you say, once on a treatment pathway everything will settle down and life will be back to the "new" normal.

    Best wishes - Brian.

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  • Hi Brian

    Your words make complete sense,  thank you. 

    And I laughed out loud about men getting it bad Joy I forgot that's the case!

    Thank you once again...I think I would go mad without all you selfless lovely people in this gang.

  • Hello Amanda.

    No questions are silly, it's how we all learn to cope with this disease. Your husband has already started on hormone therapy and this is going to have a big effect on his body which will experience changes he is not used to. It is natural to worry about any unusual symptoms and the mind runs riot. The hormone therapy works quickly to put the brakes on the cancer by blocking the cancer from getting to its food supply initially and then by stopping the testosterone being produced. The doctors will be checking that the testosterone level drops to castration level to confirm that the injection/implant is working. I think your husband has been on the injection/implant for a month now so he should already be there. The injections/implants work on a part of the brain and changes in the hormone levels in the body can result in funny feelings. If the symptoms are long lasting then you need to get them checked out. Hopefully when you have the treatment plan things will settle down. The PSA will give an indication of how things are going. It may take a while, depending on the treatment type, and should drop to a very low level (the nadir). A series of rises from the nadir would indicate that things need investigation and a change of plan instigated. The doctors will tell you when the different treatments stop working but at the moment they have plenty of tools in the toolbox to try.

  • Thank you so much!

    What you say makes so much sense and is much better articulated than when I tried to explain it to my husband earlier. It is easier for me to think of other things it could be because I am not in his shoes!

    He does so well mostly, and we are trying to live in the moment day to day, but we both have our wobbles (I take myself off out now and then.so I can be strong for him) now and then.

    I am so grateful to you guys for your support and advice.

  • After getting a cancer diagnostic, it is normal to worry whenever something is "off". Every time I feel that my neck's lymph nodes are more sensitive or enlarged, I always think that maybe some metastasis has settled in them since lymph nodes are prime targets for mets.

    But, so far, its always been something not important like an upcoming cold or such. 

    I believe it is only time that will change how often you and your husband might worry. While a treatment is still working, for example if he is on ADT with a non-detectable PSA or non-rising PSA, I find that after a while, probably was over 7-8 months in my case, you start not to think about it or worry about as often. There have even been periods of several days where my mind does not go to cancer a few times a day. 

    It's kind of like when you get your heart broken or you lost a parent. Initially that is all you can think of but after a few weeks, months or years, then it does not occupy as much of your mind. But it takes time. How much time will vary for everyone.

  • We all get the wobbles and are grateful for the 'family' on the forum to pull us through and get things into perspective. My hubby was having a serious wobble today as we waited for MRI results after his SBRT treatment 2 months ago to drop into my email. He is fine now that all the mets show slight to moderate reduction.

  • Thank you!

    You are so right. I have two words going around my head constantly....stage four, stage four, stage four!

    I am looking forward to a time when it is not the first and last thing I think about when waking and going to sleep.

    I am so glad that you have periods where it is not on your mind souch and you get some "peace"

  • That is such great news for you both and has really made me smile for you! 

    I have read your kind replies to others and we are so blessed to have you and the others on this forum, albeit I am sure I speak for all of us when I say, we would all rather not be here!

    I hope you both can now relax a little and enjoy some peaceful time ahead.

  •   , initially all waking time seems to revolve around thinking about PCa, but it does get much easier and you accept a new normal.  Keep positive.  Best wishes, David

  • Thank you David 

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