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Symptoms of secondaries & how best to explain to new consultant?

6 REPLIES 6
Seashell60
Member

Re: Symptoms of secondaries & how best to explain to new consultant?

Thanks Lynnq, I can't believe it's almost two weeks since I saw the consultant & had bloods done and two weeks on Thurs since the actual bone scan. 

I always have access to a breast care nurse, I kept the direct number ever since 2014 when I had to contact one of them for a scan on my liver. She was the one who got me back into the system last summer Andy arranged for me to restart hormone treatment after an 18 month break. 

I had a letter yesterday from my appt with the consultant on the 10th, it was dated the 19th and he wrote what we discussed and what he had done in respect to getting bloods done and arranging the scan. 

Where he says he has arranged the bone scan to check for bony metastasis (CA breast 2012), and on the bloods he asked for checks to include ESR, CRP and an autoimmune profile. What do these terms mean, I've not heard any of them before. 

Strangely though, he says he has discharged me from the breast clinic. But, I have not heard either way any results from the bone scan, surely they would wait until then before not seeing me in clinic anymore? 

So much information to take in and remember! 

Cheers, Michele 💖

 

Lynnq
Member

Re: Symptoms of secondaries & how best to explain to new consultant?

Hi again Michelle. So pleased that you managed to have a good talk with your ONC and that he has organised a scan for you. Just wondering if you have been given access to a Breast Cancer Nurse, if you have and you have a phone number then she would answer any questions about appointments and whether you will have a follow up. In the past I have had a follow up ten days to two weeks after scan. However on the odd occasion the BCNurse has rung to tell me that the scan was stable so my next appointment will be the routine 3- 4 monthly one...

Hope you're feeling a little better, like Carolyn I think that stress and worry can cause a lot of pain,

X
Moijan
Member

Re: Symptoms of secondaries & how best to explain to new consultant?

Hi Michelle,

 

great that you managed to achieve getting all those tests...you obviously were very organised when you saw thr cons xx

 

, as Carolyn said, stress does affect us and can also give us symptoms which mimic disease, the good thing is that you will know fairly soon. Hopefully you will be pleasantly surprised xx

 

Moijanxx

Seashell60
Member

Re: Symptoms of secondaries & how best to explain to new consultant?

Thank you Lynnq and Carolyn. I saw my new consultant on Tuesday, told him how I felt. When I saw him in October I was more concerned then about my ongoing heart issues, and he lowered my Thyroid meds. So by the time I saw him this week, the bone pains and awful fatigue, tiredness, general feeling of being unwell were the most important thing I wanted to tell him. He is a very nice and understanding breast consultant ( a friend of mine who also sees him did say to me that he is just the nicest one there!) and did a quick check over and straight away said he would get a bone scan arranged, and sent me to get loads of bloods done right away. He also raised my Thyroid meds back up. He mentioned that he did not think that this was being caused by the meds I am taking (Exemestane), partly because I began noticing the pain and fatigue while in a break from the Anastrozole for 18 months and partly because he said most of the aches and pains for the hormone meds were in the lower body, that spooked me! 

Anyway this was on the Tuesday. The next morning the scanning dept rang me and said that Mr C had asked them to book me in asap, which they did for the next day! Boy, was I surprised! So had it done Thursday afternoon, what a long day that was, 4 hours in total! The radiographer said hopefully I might hear something next week or so. I can ask my GP on Monday if my blood test results are back yet. The only thing I forgot to ask (it might have been mentioned but I don't remember) was if I have a follow up appt with him at all. My mammogram appt came through for the 2nd Feb, fingers crossed for that as well! 

Cheers, Michele 💖

Carolyn52
Member

Re: Symptoms of secondaries & how best to explain to new consultant?

Hello seashell
Welcome ..like Lynn has said try to consise your aches and pains to oncologist and hopefully he will set you up a scan or bone scan to put your mind at rest .
Stress is the worse cause of pain so try to keep calm ...
Let us know how you get on ...
Carolyn xx
Lynnq
Member

Re: Symptoms of secondaries & how best to explain to new consultant?

Hi Seashell. I am sorry to hear that you are in so much pain. It is such a worry isn't it? And when we are worried we sometimes become all flustered and emotional when trying to explain.

I think that you should write down your symptoms just as you have here and read your notes to him on Tuesday. If you also have someone who can come with you to the appointment.
Hopefully he will arrange a scan/ test which will hopefully give you a definitive answer.
Are you taking any painkillers?

Let us know how things go on Tuesday..


Seashell60
Member

Symptoms of secondaries & how best to explain to new consultant?

I'm seeing a new consultant this Tuesday & must tell him about this pain, which has been niggling in my bones since a year ago, which has progressively become more severe and almost constant. It's just over 4 years since diagnosis of Stage 2 ILC with positive nodes. Had two ops, node clearance. Finished chemo & Rads just over 3 years ago. Took Arimidex for 18 months, was taken off it in May 2015 & took nothing until August 2016, so 18 months with no meds. It's nothing like the aches & pains from the Arimidex, as they went away as soon as I stopped taking it. This started about 8 or so months after that, a real feeling of proper pain right inside my bones. Both my arms, especially upper arm bones to the point where they feel like they're going to snap when I try and move certain ways. My upper left arm is particularly painful when I touch it. Also my lower right forearm hurts a lot, my collarbone aches and makes me feel sick. And the rib pain takes my breath away when I turn a certain way. Lower spine, right hip too. I need to explain everything without waffling too much and get some tests even just to put my mind at rest. I feel as though I'm in a bubble waiting to find out what's happening. Can anyone advise me if these could be bad symptoms? So nervous for my appt on Tuesday. 

Cheers, Michele 💖