Hi Songbird68

I'm sorry to learn you seem to be sharing the same frustrations as me. 

I am 46 and have Intrahepatic cholangiocarcinoma (bile duct cancer gone into the liver) Cem gis chemo was abandoned as whilst existing tumours shrank some, new tumours appeared. I've been put onto Xelox chemo as palliative treatment. I have a 13 year old son and as you can imagine am desperate to be here for as long as possible, 

I had phone call with oncologist a few days ago and I just feel they dismiss everything I suggest…

My result for genetic test is back and unfortunately I’m not suitable for that other treatment 

I have had chronic back pain since December .. am told no point in referring me to a specialist in spite of latest MRI showing two new compression fractures at L2 -and L4!  Am told they need to control with pain relief ie more morpheine I’m not happy with that as if I didn’t have cancer they wouldn’t give me morpheine for back. So I spoke with gp- they agree I may have osteoporosis with early menopause from preventative hysterectomy for mutated brca gene and are arranging bone scan, physio and vit d/calcium. Local hospice ringing me about alternative pain relief as they agree with me. 

I suggested a clinical trial back on 25th feb - it closes end of March and he said is not a test they routinely do so no time to look into it before it closes? 

Asked about second opinion that I asked for 5 weeks ago - said they were waiting on genetic test result before referring so I don’t think I’ve actually been referred… they said they would expect them to only refer if the next scan shows this second line chemo not working? I rang cancer nurse said I’m not happy I want second referral now so she will ask oncologist again 

I asked about a new treatment called histotripsy that involves using exploding bubbles to destroy Tumours under a professor xxx. Thinks it’s only for small tumours but will look into it more. I’m going to contact this professor myself. 

Told them I’d spoken with prof xxxx I paid private for the call and that he will consider surgery if no new tumours and existing continue to shrink - all oncologist said was will bear that in mind? 

I just feel that I’m doing all I can and don’t have their support - totally feel written off. 

I have even contacted xxxxx for a second opinion who have my notes now so I’m waiting to hear from them. This will cost 2500 dollars but I just don't know who or where else to go?!  I thought I'd share my experiences so you know you're not alone in feeling let down x

Hi Cjack03,,

I am so sorry that this is happening to you! There are so many people on here who get great treatment and then there's the hospitals that are frankly 'meh'.  

I have been given very part time staff, and a very old and frankly uninterested surgeon ( not really his field and not big enough lesion). I should have guessed the way things were going when my appointment was 45 minutes late, with no apologies, and on entering - he hadn't even looked at my notes or scans. I haven't really complained,  but my husband thinks I should as he thinks my treatment so far has been pretty shoddy. 

Now I am looking at private route.  I don't care if I have to have the tests done again. Reading what you have been through is horrible. At least when the scans are done they are by one experienced person - and when you see your consultant,  it's not some random person.  I feel like I have been given a really rough ride - and I feel that you have too.

I really hope you can find someone to help you quickly xxx

Hi songbird68

Thanks for replying ... 

where is your cancer? 
 

x

Hi Cjack03,

Not diagnosed as anything - the lump is in my bum cheek - in my gluteus maximus  - this is one of the reasons why there's no hurry - there's no interest in this area. If this was my breast it would have been sorted months ago. This is why I am getting peed off - I have a lump that is just being effectively ignored and they and I don't know what it is. The ultrasound came back as inconclusive and the MRIs both read by the same remote radiologist said biopsy as they said 2 types of benign cysts that it could be - but nothing concrete as it's just an image. The MRI I had done 4 years ago showed this thing as a dot - its 3x bigger now. So benign or not it is growing 

Oh no! Surely they need to do a biopsy? X

Hi Songbird68,

I guess that to start with you need to know the kind of growth you have. It is always difficult to know if we should go private or not, but if that is the only way for you to be listen to and find out what is going on, it might be worth it. Of course after always depend on financial circumstances, how much that investment would be and how kind you would need to wait for answers on the NHS.

I've been told that I have this mass on my rectum wall over a month ago and was offered a colonoscopy only for April, even if considered as urgent. I ended up going private for a colonoscopy and at least now I know that the issue is not from the colon. Due to a string history of colon cancer in my family this gave me some piece of mine. 

I am now going to have an MRI on the NHS this week but I would go private if I had been told it would be another few weeks again. It is a lot of money but I have high anxiety when it comes to health and need to have answers asap.

Would it be possible for you to have a private consultation with s specialist and probably see if a biopsy could be done?

All the best.

Xx

I am now waiting for removal - which could take up to a year as they have not classed it as urgent as it isn't bigger than 5cm. That's why I am seriously considering private route. I have already waited well over 6 months or so to get to this point! 

Hi SelynaPTR,

I am seriously looking into private route - but I am lucky in the respect I have access through my work - I do have to pay an initial fee first, but then it should be covered. I have done it in the past - but it means testing again, and everything has to be authorised before the tests/ consultations can be done. I have sent an enquiry asking if I am able to access consultation without referral - but if I do need the referral I have to pay GP to do a referral letter. Getting to see/ talk to a GP at the moment is a feat in itself! I do know that they are super quick in comparison to NHS - but I also have reservations that if it does turn out to be a nasty, I end up back with the NHS at the back of a queue.

Hi Songbird68,

Are you sure you need to pay for the GP to wrote a referral letter?

I told my go that I would like to have private Investigations done and she wrote me the letter that I collected the following day and after forward to the private consultant that in 2 days accepted to see me 

The GP didn't charge any fee... I hope yours can just do it for you as well.

Xxx

Hi SelynaPTR,

I am not sure - my friend was charged for her referral letter, and the last time I accessed private was for neurology , which I had waited for 6 months on NHS for an urgent consultation - to be told another 6 months at least, so my GP gave me a referral for free as the timescale was so bad! I need to see what reply I get to my enquiry first - then I will take it from there.