Unwell but no one believes me

I posted here a while back about back ache and am posting again on a similar point.

I had bc 2.5 years ago (the full works - mast, chemo, rads)

Ever since then, every few months I’ve had strange symptoms which have gone away again (really bad head ache, pelvic ache etc.)

A couple of weeks ago I developed back ache. Went to gp who ordered blood test which came back normal. Now the back ache has subsided but I am definitely not well - tend not to be too bad in the morning but in early afternoon feel unwell, nausea, pains in my neck, odd pains in hands or feet. I went to see the gp again and was just prescribed pain killers. My husband and mum really think that I’m crying wolf yet again and tell me to try to put it to bak of my mind. I’ve resolved to give it one week and then go the the bc specialist.

But what could this be? Do these symptoms sound familiar to any of you? Any help is welcome

Hi, Susie - are you on any medication, such as Tamoxifen or Arimidex? or other meds. for non-cancer complaints? If you are, read the leaflet and you may find some of your symptoms. Post here so that anyone taking the same stuff can compare notes with you.

Sadly, chemo effects and RT for that matter can come out over a number of years, so it could also be something to do with how your body reacted recovered from chemo. Digestive upsets and unprovoked pain can also be early signs that cancer is busy (or can be an effect of the stress and anxiety about this possibility). This can happen 6-12 months before anything shows up on blood tests. So maybe start to keep a diary note of how you feel. Pain killers are probably the last thing you need if you are trying to get to the bottom of the problem, unless they work the first or second time you take them. Seems to me you may be experiencing fatigue in the afternoons which means you need to rest and when you’re not feeling bad, try to get as much exercise as possible - this helps to fight fatigue and aches and pains by oxygenating all the cells in your body and removing stress toxins from your muscles which are then dealt with by your liver and kidneys. Don’t be ashamed to have a lie down in the afternoons. The anxiety about all this and your family’s reaction is complicating the picture. Do what you can for your own wellbeing - maybe a gentle massage to ease the aches and pains? and be gentle with yourself. You’ve been thru a lot and your body hasn’t forgotten. Being vigilant is the intelligent response to what is going on. Your family would not forgive you for not raising the alarm if things turn out to indicate a recurrence, which I hope it isn’t!! Over 67% of women don’t get a recurrence after what the docs. have said is successful treatment. I wonder what tests your GP did. Hve you got a copy of the results? Where I live, my GP has nothing to do with my follow-up except for prescriptions for the annual flu vaccine - I can always check back with my hospital oncologist. If you are not satisfied, that’s maybe what you should do. Also you can discuss your symptoms and your blood test results with the support staff on this website by phone, or with cancerbackup.
Wishing you well and sending you sunshine,
Jenny

Hi Susie and Jenny,

I can really relate to your experiences Susie, I seem to feel every niggle and think, “oh havnt felt that one before” then it goes away, or I go and get some more scans, which show nothing. Then I feel paranoid! Keeping a diary is a good idea Jenny. However, they are our bodies and we have to be aware of changes! I feel like my grandmother half the time who was always doing a balancing act with her meds. “its all about getting the drugs right” how true that is!
Take care, hope you are feeling better soon Susie, just jump up and down as much as you like!
love Suzy

Hi

I dont want to put a downer on this but I would by- pass GP and go back to bc specialist, bc nurse or onc.

I had bc in 2000 followed by chemo, rads and tamoxifen at the age of 34.

In August this year, I gave birth to a bouncing 11lb 2.5 oz boy!! I had suffered from a pulled muscle behind my ribs in May, then developed sciatica followed by the muscle bit in ribs again. It was all out down to the pregnancy. My GP just prescribed co-codamol (being the strongest they could give at the time) - this was the 2nd bout of rib pain and the 2nd GP.

Towards the end of pregnancy, I couldnt walk without crutches and at the very end, I couldnt weight-bear on my left side and was wheel-chair bound.Luckily,the alarm bells started ringing with the gynae-woman who then called the bc consultant, who arranged for x-rays.
I had the baby on Tuesday and was sent for MRI and CT scan on Thursday - and was then told that I had secondaries to the bone.I had a bone scan the next day (had to keep away from my new baby for 24 hours cos of radioactive dye!)

As the original bc was 7 years ago, I suppose that I was ignorant! Looking back at a leaflet later, it said that I should have got any pain checked out that lasted longer than a week. Well, in my eyes I did - but only at GP level!

I urge any lady to take something like this back to their consultant.

It may be that I am overcautious now - but I too send you my very best wishes! Good Luck

Anne x

I totally agree with you Sixpen, sometimes I think you have to take control. I said to my consultant yesterday that I want a brain scan as they have scanned everywhere else and for my own piece of mind i want to know if it has spread because I also suffer from something called arnold’s chiari which affects my head I want to know if the things i feel are that or possible secondaries. I am so sorry to hear your news it made me cry I also have a 10mth little boy and a 2 year old and this should be the happiest year every and I feel this bloody disease has robbed us of that. How are you coping day to day and how big is he now what a whopper!!! Well done you they will make us fight this.
Take care and good luck

With love

C

Hi

I really dont mean to make anyone cry with my story - its just that 7 years on, we thought that we were in the clear.
Little boy is now 7 wks and 4 days old, and weighs 14 lb at the last count. He is great!! He is my fight!!!

Re-reading my post, what I failed to explain was the ‘pulled muscle behind my ribs’ and the ‘sciatica’ are actually the disease in my my rib and hip/pelvic area!!! And, this is why I advise to go higher than GPs - they are not the experts (although they are very good)

Take care

Anne x

Hi
Like sixpen/Anne said I would ask for a referral back to the oncologist and let them know what is going on. The GP,should refer you back cos of your bc history.
It can of course, be down to hormone tablets or just delayed reacion to rads but you read too many stories here where women have been seen by the GP and eventually become so ill that when they are referred to onc, there are signs of significant spread.
I’m sorry if I’m panicking you but so many women just don’t get early enough treatment for their secondaries and you often have to push for treatment.
Is the numbness in your hand on your affected side as you can get nerve damage from rads that appears about 2 years later - that’s just what has happened to me but they are still investigating it as probable secondareis as I have a lot already!! Can’t see how painkillers are going to help numbness inn fingers anyway.
My bone mets didn’t show on my first bone scan even though I could barely walk 50 m at the time - so even scans are not 100% reliable.
Good luck and I don’t think you are crying wolf - something is not right and hopefuloly it will be an innocent explanation.
Sorry - I feel I must be scaring you all but it just makes me cross when women have symptoms that may or not be bc related and the GPs don’t take it seriously and won’t refer on back to the onc.
All the bst
Kate.

Hi,

Agree you need to be seen now. I was feeling unwell but not sure what was wrong and eventually after a few months was sent for an MRI scan, but I think I should have demanded a bit more at the start. After all you know your body and what is normal for you best.

Treakle