Bone, secondary cancer

Secondary bone cancer is cancer that has spread to the bones from a primary cancer somewhere else in the body. This group is for people affected by secondary bone cancer to share experiences and get support.

Fear of secondary

Gwin
Posted by

Hi all , I was diagnosed with agressive invasive bc back in March 2016 . It was an incidental find due to leakage from the opposite breast and was at the time told if it had been left until felt I wouldn't have seen that Christmas . I still struggle with that thought . Having had aggressive chemo which was stopped due to intolerance , radiotherapy and herceptin I am now on tamoxifen to be reviewed in 10 yrs time . My health as since then deteriorated and despite perseverance I struggle daily with the dreadful side effects these poisons have left me with . About 4 months ago I started with a lot of discomfort in my abdo and back , loss of appetite , bloating , feeling full , loss of weight , lethargy and more recently loose stools and nausea on a daily basis. . Numerous scans , bloods etc , etc have been carried out through gyn and gastro but shown nothing significant . I have now been referred back to gastro this time looking from the top down . Am at my wits end . I live in fear of re occurrance given that I didn't even know the big C was there in the first place . Apologies for the long script just needed to get off my chest .  I used to be as fit as a lop until all this and I know my own body , something just doesn't seem right but I often feel that I am not being heard and my concerns are dismissed as anxiety . I wouldn't have thought bleeding from my bottom was caused by anxiety . I hope in a way that something is found at least I have an answer for feeling this way and then I may be heard . Dreadful thing to say but I feel so desperate now . 

Peebee2
Posted by

Hey Gwin...  I think we are all on the same page here at the minute, waiting for tests, results, hope, and me right now some pain relief! I can feel your apprehension as you wait to find out if it’s back and your living the rollercoaster again... I also like you was as fit as a lop, yet this week and the past few I don’t know myself or who I’ve become. You need some answers and soon I was like you as in I didn’t see this coming first time round small breast lump no node involvement had some chemotherapy as precaution and radiotherapy for back up and here I am 5yrs on incurables... how did that happen? I’ll bounce back once the pain is controlled and you will get through this again Gwin... we are all here for a rant or a virtual hug xx 

Thinking of you Jo xx  

Gwin
Posted by

Thankyou Peebee2 for kind reply , it's a warming thought that through this group there is always someone there regardless of the time of day  to give reassurance and comfort without having to wait days , best wishes Jo xx

Lass
Posted by

Hey Gwin,

You know, I could have almost written your post myself. All of those symptoms you're having, I'm having too, just not the loss of weight. Since July my health has seriously deteriorated, and some doctors seem to want to fob me off and call it being over weight and inactive. But as you do, I know my own body. This has nothing to do with that, and there's something else going on. At this point, I really don't care what it is they come up with as a diagnosis, even another cancer. I just want a diagnosis, so I've then got a plan of action on how to make it better.

So I can totally understand where your head is at, and I know it completely sucks. But hopefully one test or the next will discover the issue, and you'll soon have your own plan of action for how to fix it!

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Gwin
Posted by

Hey Lass , sorry you're going through the same awful situation , I genuinely sympathise . Yeah feel exactly that way even if it were to be a secondary then at least I could give it my all . Mind you my symptoms are being exacerbated by a " drastically "  low thyroid which isn't helping any . Again another issue that I have presented my GP with for several months but again made to feel like I am fussing , now it's at a dangerously low state . I hope we both find answers soon , Jo xx

Lass
Posted by

Lol.

My primary is thyroid cancer, so I have no thyroid and have experienced hypothyroidism for my RAI a couple of times. What are your TSH and T4 numbers, and has your Dr got you on thyroxine at all?

I just got a letter saying the blood tests done on my liver, that the Dr said would come back clear, haven't. So I've to have a special scan on it and another blood test to check for scarring. So suspected Fibrosis/Cirrhosis it seems.

Fun fun.

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Gwin
Posted by

Hi lass , well Would you believe it lol , I've suffered from hypothyroidism for donkeys years and thus been on levothyroxine , never asked about my T4 numbers however they have no doubled my intake as  it's dropped really low . I too have been referred back to gastro for my liver to be looked at as well as stomach and oesophagus , lol we could well be twins lass xx

Lass
Posted by

Heya,

Next time you see someone, I'd ask what your T4 and TSH numbers are. Because if your TSH has dropped, you're on too much thyroxine. If it's the T4 that's dropped, you're not on enough.

I'm seeing hepatology for my liver. But I did have an endoscopy on the 21st of December. Sadly despite starving for 12 hours rather than the 6 they suggested, my stomach was still full of food. So they couldn't see anything. I'm booked in again for the 1st of Feb I think it is. So looks like I'm going to have to go longer without food!

On the 2nd of Jan there too, I got a finger up my bum to check for abnormalities. Nothing to feel, but I handed in a couple of fecal samples too. So depending on what they show, it's probably a colonoscopy next too, and a referral to gastro. Lol.

You can see my full journey on my profile if you're interested and have some time. Lol

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Gwin
Posted by

Hiya Lass , my goodness you've been through the bloody mill , I now feel like a novice lol . My colonoscopy came back fine but been re referred cos of on going symptoms . I am experiencing . Oh did I mention also that I have gone through the menopause and in April started bleeding from both eds , hence gyn and gastro referral in the first place . Yet they tell me it's nowt to be concerned about . WHAT then why and where is it coming from . Your experience with Docs getting it wrong as wobbled me even more so . Scary stuff , we put our faith in these people and what they tell us but as is proved even they get it wrong . That is why I keep emphasising that I know my body and I know there is something not quite right . Should imagine it'll be an endoscope for me next just waiting on appt , Jo xx

Lass
Posted by

Sounds like you're a Yorkshire lass with the use of the word nowt there?

And yes, I'm collecting 'ologists. Lol

Yes, if they told you it was nothing to be concerned about, BECAUSE it was x, y, z and that's not concerning - then I'd be happy with that. There would be a reason for it that you could point to and say why. But them not finding a reason and just saying it's nothing to worry about, wouldn't set me at ease at all.

But don't be wobbled by my experiences. My body seems to make a sport out of proving my Drs wrong. It's become a running joke with the regular Drs I see. 

As for the endoscope, it's not great. I'm going to ask them if they'll do my next one without the numbing spray or sedation. Waste of time imo and just made me gag more. Lol.

I hope, if you need one, you get a good team.

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Gwin
Posted by

Hi Lass , I am indeeda Yorkshire lass from a little town known as Pontefract . Thanks for the good advice I  shall bear that in mind and keep you updated , keep strong xx

Lass
Posted by

I'm getting better at recognising Yorkshire folks. Lol. I'm not far from you, just in Leeds.

But I've heard of Pontefract, because of Pontefract cakes. Lol.

And I'm having a weak day today. Not done any exercise yet today after aggravating my Mets a couple of days ago. Really need to get back to it again, this 10 stone isn't going to shift itself. 

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Gwin
Posted by

Lol , know Leeds well , had radio at Jimmy's xx

krystyna
Posted by

Hello everyone,

I’ve been reading a batch of your posts as I haven’t felt like going on t’internet, but as my cocktail of drugs is working a bit, I’m going to reply.

we all have to put up with so much, don’t we? We make little of it but dear god it’s hellish, and thank goodness for the forum. I’m waiting for an appointment with my oncologist as had a scan on Christmas Eve - ho ho ho - and am in major pain in one hip, back and leg. Quite good gp’s have given me some pain relief, which doesn’t get rid of it - oh no that would be too much to ask - but eases it. I have a terrific neighbour who used to be very high up in drugs (maybe could have phrased that better?) and he has studied my portfolio of drugs and suggested some adjustments which might help....but oh, the nights, and the fear, and the imagination which runs riot. Putting away my Christmas decorations, I have kissed all the wee mice on their noses and told them to be good for their next owner, as I am convinced this Christmas has been my last. I can’t tell my husband this thought as it upsets him too much and he tells me off to hide how he feels. I do hope I see the oncologist soon.....might as well know the truth.....o how I wish my life was different.  And yours, all yours, all the forum users, and everyone stricken with this vile disease,

god bless you all (Muppet Christmas Carol still in my mind).....Krystyna 

For I have promises to keep, and miles to go before I sleep.  And miles to go before I sleep.      Robert Frost

Peebee2
Posted by

I think we all have really evaluated our lives over Christmas haven’t we and I bet all of us looked at this as maybe our last.. I see why and it’s a sad fact.. I’m feeling so much better today and I feel like I’ve got my spirit back but last night I told my other half I couldn’t live like this anymore as the pain was too much so I can see how quickly things can esculate to the point of no return and then change so dramatically... he brought up holidays and hot tubs today, I think speaking like I did has worried him and I feel bad now... but booking holidays in skiathos and new year in koh samui ain’t bad! 

Providing I’m well!!!!!!