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 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

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 Cjack03,

Had an excisional biopsy done on Friday, by the surgeon I saw originally on NHS!. I had actually filled in the private paperwork, had a GP referral all sorted, as I had been told I would be waiting some time. A day after I filled in my private paperwork, I got a call from the local NHS hospital saying they had a cancellation for 2 days time (last Friday) so I said yes please! I thought it was going to be a different surgeon, and it wasn't, so I was a bit spikey to start with, but I think I might have seen him on a bad day! May be he looked through my paperwork and thought I needed to be put on a cancellation list. No worries it's out. Pretty sure it's not what they expected, and it was flipping painful (done under local) - just waiting for the results now, but I know they are taking a lot of time to come through now.

That's great, glad you finally had the biopsy! Please let us know the results, hopefully nothing sinister.
I'm still waiting to hear from a hospital in Manchester on a second opinion and I've paid £2000 for a second opinion at a cancer centre in New York. 
I'm on cycle three of the OxCap chemo combo and am praying it does what it's meant to do they'll consider surgery  

take care xx

Hi Cjack03 

Hope that you get some positive  results from your treatment.  I'm not sure what my results will be- I do know what wasn't said - and that was it's only a epidermoid cyst or it's nothing to worry about. He is sending a sample to histology and the dark liquid he drained out of some of the cyst to cytology.  My paperwork says it was a lump removed and diagnosis after histology results. So not what he was expecting I think. I knew it wasn't straight forward- it was getting someone to do something- so I can get why you have done what you have done- if you can't stand up for what you believe- then who will? 

I will let you know what happens- please let me know how you get on.