just looking for some advice ......

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Hi all

Haven’t posted for a wee while as things were going so well…

Just a bit of background for those that haven’t seen me about for a while. I was dx in nov last year - Grade 3 Stage 2 IBC, 5/11 lymph nodes involved, ER & PR neg but HER2+++. Had right mast and full node clearance, have had 7 x chemo, 25 rads and currently heading towards number 5 of 17 herceptins, and went back towork on 25th Aug. For some time I have been suffering with lower back pain, as a result of which my onc sent me for a bone scan (had one at dx too, which was clear) and also plain xrays.

Had the scan on 5th September (at Edinburgh not my local hospital in Dumfries), and follow up appt with onc in Dumfries on 10th September. At this appt she only had the results of the plain xrays, which showed that I had degenerative damage to my spine (ie I’m getting old lol) - but she said the radiologist in Edinburgh hadn’t had time to analyse the bone scan, so she didn’t have results.

However, last Wednesday, just as I was leaving home at 4.30pm to go to a 3 day trade fair down south, the onc rang me to say she had the results, which were good news and ‘other’ news.

The good news was that my bones were fine, no sign of spread, nothing wrong other than (again lol) signs of old age (and I’m only 47!).

The ‘other’ news was that the radiologist had picked up from the scan that there was something wrong with my left kidney. Apparently it is not the ‘normal’ shape, and appears very irregular. (apparently, as the radio-isotopes gather in your kidney ready to be flushed out of your system, this can be picked up on these scans).

However, as the scan isn’t primarily designed to identify any problems with the kidneys - she obviously couldn’t tell me any more, but has arranged for me to have a kidney ultrasound on 1st October.

I’m naturally worried sick now that the cancer is lurking in my kidney - for some reason this isn’t a place that I think of it spreading to (no idea why?) - not really sure what I’m looking for in the way of advice - think I just needed to ‘voice’ my worries (as of course everyone in my family thinks I’m being silly and there’s nothing wrong at all…)

Sorry for such a long post

Magz x

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just been on CRUK looking for info - shouldn’t have bothered (and I probably knew it was a bad idea before I looked lol)…sometimes the internet isn’t a blessing, just causes more flippin worry!

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Hi Magz

Please do feel free to call our helpline for support and a chance to talk through the worries you have at the moment in confidence with one of our specialist nurses, the number is 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.

Best wishes
Lucy

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Thanks Lucy. I’m not really sure what I was looking for … I guess I just have to wait and get the tests out of the way, and stop ‘second guessing’ what the results will be !

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Hi Magz

Dont know what to say really just another crappy time of wait and see. We should know this by now but it doesnt make it any easier.

Im sure someone who has had something simular will come along and update you soon.

If you want someone to chat to off line please feel free to email me.

Love and hugs

Karen

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Thanks Karen - trying to keep my ‘sensible head’ balanced on my shoulders, and keep telling myself it’s just an infection or something. Fortunately I’m really busy at work at the moment, so don’t have much time to think about it during the day. It’s when it’s ‘stupid o’clock’ time lol, when I should be in my bed that I start letting my mind run amok.

May well take you up on the email - keep sending the funnies anyway !

Right I’m away to bed - stupid o’clock approaches lol !

Magz x

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Hi Magz
I was also diagnosed last Nov so recognise your name having seen you around then.

Several years ago following pains which it was thought were linked to ovaries I had an ultra sound scan which instead picked up abnormal kidneys - a panic at the time.
Since then I have been through a range of tests and have a yearly mag3 scan.

Basically I have ‘two abnormal kidneys which work abnormally to produce results within the normal range’ thats the official line. The right kidney is ‘baggy’ and not kidney shape and the ureter like spagetti as it wanders around on the way to the bladder, the left looks normal but there is a narrowing in the ureter so it empties very slowly and causes pain if I drink to much.
The consultant suspects that it is congenital and that if there hadn’t been pain and the investigation for problems with the ovaries they wouldn’t have been picked up.
Hopefully it is something similar in your case and its only because you were having a scan that it has picked it up.
Off to work will pop in again later - hope this helps - similar name, similar kidneys maybe!!!
All the best for october 1st, let us know what happens won’t you.
lots of love
M x

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bump

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Thanks for that Magsi. I have almost convinced myself that it’s just going to be an infection or something. I did used to have kidney probs when I was a kid. Nothing serious mind.

It’s just the usual sitting about waiting for the tests that’s doing my head in!

Went to get my hickman line flushed today - and appear to have developed an allergy to the silicon tubing. My skin has blistered and broken where the tube rests on it - so now have clear plastic bandage over site where it leaves my body and the tube itself is coiled round and round on top of the plastic dressing and held in place with micropore (can’t let the micropore touch me either cos I’m allergic to that too lol.

I’m soooo hoping you are right - similar name, similar kidneys! I shall hold that thought!

Magz xx

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All the best will be looking out for good news.
M x
P.S. also had a mastectomy but left not right!

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hi magz175

lovely to hear from you but it sounds like you are very worried (naturally)

the only thing i can say it that we all have imperfections all over the place that unless you are under the spotlight as we are you would just never know about them - as you say you had problems with kidneys when you were little - bet you never expected to be pleased about that!

really sorry you are having to go through all this stress and obviously have everything crossed for good news for you

do your best not to worry - it’s not good for us! - suggest you keep off the internet - you won’t know any more until after you’ve had the test i.e. had it on the 1st and then got the results - try not to build yourself up too much for the 1st as if you have to wait for the results you will be very disappointed

how’s the barnet coming along?

lots of love FB xx

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The barnet is just fine thanks Fiz…almost got the ‘elfin’ look now (unfortunately lol!) - though at 4ft 10, everyone says it suits me and I shouldn’t grow it any more!

Magz x

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All the best for the kidney scan tomorrow Magz, you will be in my thoughts and prayers.
M x

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me too love FB xx

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Hi everything crossed for you tomorrow if positive thoughts and good wishes can help youre on a winner.

Love and hugs

Karen

XX

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Hi Magz,
How did the scan go today?
M x

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Was wondering too but don’t want to put you under any pressure … love FB xx PS Thinking of you

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Hi Magz

As the others have said thinking of you

Love and hugs

Karen

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hi all . Thanks for your good wishes. Unfortunately the kidney scan didn’t go ahead. I was instead admitted to hospital on tuesday with suspected blood clot on lungs, after suffering dreadful pain all monday night. I’m still in hospital now - only just managed to get mobile to connect to internet. Prognosis now looks like i have fluid on lungs caused by infection, possibly in hickman line. Feel much better and hoping they let me out soon! Then they will re-arrange kidney scan. Seems a bit silly really - i’ve been in scan dept 3 times in last 3 days for chest and lungs - as i already had appt would have seemed sensible to do kidney too? Anyway will let you know how it goes - whenever it is! Magz x

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Hi Magz

Sorry to hear that you are poorly and hope that you are feeling better soon. It does seem silly that they wont do your scan whilst you are there but that would be too easy wouldnt it lol!! Can you access your email Ive been sent loads of funnies to cheer you up.

Sending love and hugs

Karen

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