I have recently been diagnosed with secondaries to my liver.
I have been learning lots on this forum re treatments elsewhere in the country and am saddened by my own local health provisions. I am wondering what standards are out there for us Scots?
So far I have been told I would not have a PET scan done by NHS as they are not considered for metastatic disease??? Also that my NHS trust would not cover a referral to London to see if suitable for such treatment as Cyberknife.
Anyone else having these responses or anyone know of any differences even in Scotland?
I obviously want to pursue whatever gives me the best chances now. I am appalled that there is such a discrepancy across the country. I only recently returned to live in Scotland from the South Coast of England due to my husband’s work project completing. I am now considering private treatment but really feel this is so unjust.
Anyone have any information/evidence that might be useful??
I obviously cannot divulge what happened about this or give you their Email, because that would be a breach of confidence, but if you want me to pass your details I am happy to do so. It could be useful for you to share information.
I am now being referred to Liver Specialist in Scotland to discuss whether suitable for surgery or other procedure. Which they DO NOT normally consider for BC secondaries to liver up here. I wonder WHY it takes so much effort from us, the ones who are already stressed, scared and upset to pursue our own cases in this way. It really is something I do not need to have to fight for when already struggling to deal with what I am doing.
I have been told I need to slow down, go to Maggies centre (which I do already), increase my support and take my time. I was also told I have a ‘lifetime’ to deal with this.
Is the point not that I DO NOT HAVE THAT! Not in the traditional sense that we hope for!
I am so angry that it takes this sort of pressure to get anything more done when asked for. I am in a position I can get up and leave this country tomorrow if I wish and seek treatment elsewhere such as Singapore (where medical treatment is second to none) or USA MD Anderson - leaders in the field of cancer treatment.
I am an intelligent, well read and savvy woman.
What happens to those men and women who are NOT!?!
C I am so very sorry that your are going through this. I’m sorry to say that there is a postcode lottery in Britain in general (not just Scotland). For example, if you require stereotactic radiotherapy (be it Cyberknife, TomoTherapy, Linac or Gamma-knife), and live in London you will probably get it - but if you live in Sussex, Surrey Kent, and many other parts of the country you probably wont, as only 28 out of 150 PCT’s fund it.
The other thing is that in Britain, the treatment of metastatic cancer is mainly palliative, not curative. That means if someone is diagnosed with stage 4 oestrogen receptive breast cancer, the chances are they will just receive endocrine therapy (and possibly bisphosphonates if they have mets in the bone). Surgery for secondary tumours is very rarely attempted, unless in the visceral organs, and sometimes doctors refuse to remove the primary. Chemotherapy is usually reserved for when endocrine therapy fails, and radiotherapy is usually only delivered at palliative doses (although the wider availabiltiy of stereotactic rads is changing this).
This is in sharp contrast to Hospitals like the Anderson Cancer Centre in Texas (which you refer to), who in treating some types of metastatic cancer (oligometastatic disease), advocate a curative approach. For example, Anderson often give their patients very aggressive chemotherapy (sometimes supported by stem cell transplantation), and they routinely give rads (including stereotactic rads), at curative doses (they also advocate removing secondary tumours surgically). They also use endocrine therapy, but mainly to help prevent recurrence.
The Anderson approach seems to work, because as you say they have the best survival rates for metastatic cancer in the US (and therefore, probably the world). I believe their 5 year survival rate for metastatic cancer is in the region of 40%, whereas ours is about 10%. But then the Anderson approach costs money, and if you’re one of the 40 million US citizens who don’t have insurance, and can’t get treatment at the Anderson, the stats are irrelevant.
You’re right that you shouldn’t have to fight to get the treatment you would like, but the reality in Britain today, is that it’s the squeaky wheel that gets the oil. If it was me, and I could afford to be treated at the Anderson, I would go like a shot.
That is very interesting re MD Anderson. I will chat to my Husband about this. He has already been offered a recall to Houston with work. My difficulty is my mother has just passed away and my Dad is 84 years old. But my brother is here and sister is only a plane ride away in Rugby…
Thanks for all the information you have - wish I had a fraction of your knowledge already!
The approach to Liver Mets in Scotland - it seems - is ‘too bad’! Nothing to be done other than drug/systemic treatments…I am shocked at the unwillingness of consultants to work with patient who is doing her own homework in this subject.
Yadeyadeyade - no reliable trials showing sound evidence in favour of anything other than has been suggested i.e. endocrine therapy change from tamoxifen to zoladex and letrasole.
This appauls me. I’m not in the same situation but I was 4 years misdiagnosed by GPs who refused to refer. I was living in rural Scotland at the time. I have been told by an expert that he doesn’t think it would have happened anywhere else - I was living in the wrong place at the wrong time. It appears to me that some areas of rural Scotland are way behind the times. I’m wondering if you are living in an area where there is a centre of excellence with regards to cancer treatment. I have a friend who was refused a lung operation by her expert, went for a second opinion and ended up with a successful operation. It is unbelievable that we have to do these things. I have written to hundreds of people over the last four years. Mainly in the hope of getting better GP training and the same standard of care thoughout the country. I live in hope! Do you have faith in your MSP? It may be worth having a meeting with him.
Let me know if you think I could be of any help with regards to my contacts.
I too live in Scotland but in a large town outside Glasgow. My GP misdiagnosed me 6 months previous to the actual diagnosis of BC in Oct 2000. I had Mx followed by chemo and rads and took Tamoxifen. Was told after 6 years that Tamoxifen wouldn’t do me any good any longer. So I came off it and less than 3 years later I was diagnosed with recurrence which presented itself as a lump in a lymph gland in my neck. I asked the oncologist I was seeing if he could remove the tumour from my neck. He laughed at me and said there would be no point as the cancer had already spread to my bones. He prescribed Letrozole and IV Zometa. I got so sick of his negative attitude which i didn’t share that I moved all of my care from the centre of excellence to my local hospital. The oncologist there is very upbeat and when a new tumour appeared in my neck she referred me for surgery to have it removed. It proved to be hormone and her negative and I am now on chemo to try to get me back into remission.
However I don’t know what the situation would be if I needed one of the more expensive, though necessary, treatments. I may face the same barriers to cure as yourself. It’s so unfair. After all we are trying to beat this disease and every resource should be made available to us. Thinking of you as you go through this journey. xx