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Failings in the treatment of Stage 4 Breast Cancer
Since being diagnosed with metastatic cancer in February 2010, I have become aware of certain serious failings, and have decided to outline these here for others to comment on.
(1) NICE have produced guidelines which recommend that Doctors should not biopsy secondary tumours (unless the primary was not biopsied). This is crazy, because secondary tumours can, and do, change their receptor. For example when oestrogen receptive secondaries are treated with endocrine therapy, the cells that survive are those that can do without oestrogen. This means if Doctors continue with endocrine therapy, they can waste valuable time and resources - and more importantly fail to offer the patient appropriate treatment.
(2) NICE were meant to produce a report last January on the efficacy of Cyberknife treatment for Cancer treatment. They have not done this yet, and as a result three out of four PCT's are refusing funding for treatment that is revolutionising Cancer treatment all around the world. Again this is crazy, because more and more NHS Hospitals are acquiring these machines as Doctors realise the enormous benefit they offer (Mount Vernon has one, and The Royal Marsden, and St James Hospital in Leeds is getting one next year). What's the point of having these astronomically expensive machines in NHS Hospitals (they cost in the region of £40 million), if only private patients can use them?
(3) Stage 4 patients are sometimes not offered choice in West Sussex. I have become aware of several people with Oestrogen receptive Metastatic Breast Cancer, who have been told that they can only have Endocrine Therapy and Bisphosphonates - making patients believe that chemotherapy and radiotherapy are not an option (when in fact some Doctors think these treatments are essential). This is completely wrong, and disregards the need for informed consent. How can any patient give informed consent, if they have not been given all the options?.
I have now joined the Partnership Group of the West Sussex Cancer Network (The NHS Group responsible for shaping Cancer Services in West Sussex), and I would like to hear the views of others. I would also like to urge people to also get involved - not just for self, but for others.
Hi Lemongrove
We've corresponded privately and share the same views on the efficacy of going after early metastatic cancer aggressively, with the anticipation of significantly better outcomes. I have been quite surprised at the fatalistic attitude towards mets - there was a discussion of it on a thread over the last couple days about having early scans, and many people seemed to be of the opinion that it didn't really matter whether mets were dx'd early or not, as the outcome would be the same anyway. I am really shocked by this - but it's not surprising if that is what we are being told by oncs.
You are absolutely right that informed consent is at the heart of it. As you know, my husband and I asked for a certain treatment plan for bone mets and had to persuade my reluctant radiologist to go along with it - we have since discovered that our hunch was right and our plan will give me a better chance of long term survival. But we had to work it out for ourselves - her attitude was very much that progression is inevitable, and we will just offer palliative care. I am very lucky that I have insurance, and if necessary can self fund treatment, because I don't think this option conforms to NICE guidelines.
Your point about biopsying secondary tumours is also very interesting. Has anybody had a bone met biopsied? I was told it was too difficult to do my spine met - does anyone know otherwise?
finty
This is an interesting thread and thank you for starting it off. When I was given a routine scan before chemo, 2 lesions were found on the lung on the same side as my bc which were highly suspicious. Immediately my chemo plan was changed to 3rd generation Tax. After chemo I was scanned again and told there was no change in the lesions therefore they are probably benign. I have no lung symptoms that I know of but was told I would not be biopsied just another scan in 6 months. As you can imagine I can't relax despite what my onc thinks because he has no proof that the cancer hasn't spread.
Viv x
Hi Ladies
In answer to Finty's question, I have had a bone met biopsed! but not in my spine, mine was at the top of my femur/hip. I was referred to a specialist bone tumour consultant at an orthopaedic hospital, as at the time, the plan was to remove the whole affected area. She was the one who suggested that before I have any treatment, she needed to do a biopsy. This was done under a general anaesthetic and was very bruised and quite painful afterwards. The stitches weren't dissolvable so I had to go back to get them removed. She gave the impression that not all oncologists go with this option as a bone biopsy is very painful.
My original oncologist had also told me that the spread was likely to be the same type of BC than the original, I know this is likely to be the case...but not DEFINATELY until it has been analysed properly, (as it happened mine was). When I had my biopsy, the bone could be tested for various things, but not its HER2 status, as this wasn't routinely carried out at this hospital, the consultant told me to ask the oncology department to send for the sample to check whether this had changed, I have phoned twice and asked at appointments.....but this still hasn't been done. Apparently the HER2 status can change too!
I also agree that secondaries are treated with a fatalistic approach. I was even told that to treat my BC in a particular way (can't rememeber exactly what) was "like closing the stable door after the horse has bolted!" After my initial 2 meetings with the oncologists after my secondary diagnosis, I was literally planning my own demise....It is only the support of people on here who have helped me to accept my diagnosis and live with it. I have been offered no support BC nurse wise. I actively had to seek the services of a MacMillan nurse when I needed some financial advice.
If some hospitals have these hugely expensive machines, I agree everyone should benefit, what gets me is why scanning departments close at 5, why don't they employ people around the clock to give patients appointments and treatments asap . I know I would be prepared to go at any time of night if it meant I didn't have a long wait....and the parking would possibly be easier
)
Take care Nicola xx
It seems so very unfair the treatment for stage 4 varies so much.
I've had excellent NHS care for the last 8 years of living with mets.
(My hospital runs evening scans when it has to and I had, until now, thought all hospital did the same.) It really is a postcode lottery.
Hi Lemongrove,
(1) My primary and mets were dx'ed more or less at the same time. So my onc insisted that they should be the same - hormonal sensitive. This is probably true. However, after the failings of Tamoxifen, I'm not so sure. After another chemo, I'm now on another combination of hormonal treatment - Zodalex and Arimidex. Should those fail (God forbids), I'd insist in biopsy.
(2) I mentioned using Cyberknife to treat my liver mets to my onc. Was told mainly used for brain mets, but rarely used for other mets. Thankfully, my liver mets is now under control, so avoided op completely for now. I'd really love to see some more research done in this area. I am a private patient, but then, what's the point if oncs don't get solid proof that it can be beneficial. I've read a lots on Cyberknife when I did some research that it is widely used in the US and with very good results. Failure on NICE!!
(3) I really feel for those in West Sussex. Chemo is the BEST option for newly discovered mets according to my onc. It works faster than hormonal drugs and can knock the cancer cells out pretty quickly if it works. Rads and op are widely divided with oncs. My onc has just given in to give me rads to a few areas after the majority of mets have been controlled by chemo. But his is strongly against op.
I wish you all the best with your involvement and can bring some relief to those in West Sussex. xx
Hi M1YU,
Just want to say that two things:
(1) even though your secondary DX was at the same time as your primary DX, this does not mean the receptors have not changed since. The problem with endocrine therapy is that the cancer cells that survive after being deprived of oestrogen, are of course the one's that can survive without oestrogen. So if it were me, I would insist on a biopsy of secondary tumours. Because there is no point in Doctors trying different endocrine therapy if someone's cancer is no longer Oestrogen receptive.
(2) Your Doctor is wrong to say Cyberknife is mainly used for Brain Mets. I think your Doctor is confusing Cyberknife with Gamma-knife (which is used almost exclusively for brain mets).
Cyberknife can, and is used for almost any area of the body. If you would like some info about Cyberknife, feel free to pm, and I'll tell you what I know.
Hi Lemongrove
How did you get on at the London Clinic - are you all set to go with the cyberknife?
fintyx
Hi all,
yes, interesting thread. I had no bone biopsy, but the assumption after scans and given the pain I was in, was that the cancer has spread and the team just acted according to that assumption. Luckily my otiginal 2003 tumour was re-analysed for its HER2 status, which came back positive, so I was put onto the Tax & Herceptin combo. I'm therefore pleased to read that M1yu's comment that 'chemo is the BEST option for newly discovered mets', as I feel that this course of chemo was greatly responsible for the period of wellness that I am experiencing now. But if that's the case, then why aren't all patients given chemo on a new mets diagnosis? The impression one gets is that there really is no standard or even semi-standard procedure for dealing with secondaries.
I'd also just like to add to what Nicola said, as like her I was offered no support and made my own contact with Macmillan to seek financial advice; even this didn't go smoothly as the person I spoke to at Macmillan was adamant that I couldn't self-refer, even though their website says you can! And of course all this precisely at a time when you have just been knocked for six and really don't need the extra stress! Luckily, I was then helped by a very savvy and helpful lady who came to my house, identified and filled in all the necessary forms and so I got DLA very quickly and then blue badge. Even so, she didn't tell me about disability rail card and disability bus pass, so I went another 14 months or so without that extra benefit!
Breast Cancer Care - perhaps there should be a sticky thread, like there is for travel insurance, about all the various benefits that secondaries ladies become entitled to - this would save them all having to research it individually, could be added to by people who find new benefits, etc. What do others think?
Finally, at my hospital there is a breast care support nurse - actually I think there are two - but they aren't supposed to support ladies with secondaries. Sounds like they've got things round the wrong way somehow! Surely they should be supporting secondaries first and then primaries, as the breast cancer is far more serious in our case surely? I gather that my hospital does now have three years of funding in place to employ a secondaries bc nurse, so I look forward to seeing what materialises.
Best wishes to all,
Alison xx
Hi Alison
If someone wants to start a thread in the "living with secondary breast cancer" section, and other people add to it, we'd be happy to make it a sticky threads.
We have to be careful not to have too many sticky threads in each section, as it tends to make the section look cluttered, but if people feel it would be useful, we could try it.
Leah
Lemongrove,
Thanks for info.
What gets me is this fixed "3-months wait" to see whether the hormonal therapy is working. Mine took 2.5 months to show that it wasn't and I had to wait for the 3 months was up to organize scans etc. By the time the scans came back and I started chemo, it was nearly 4 months! All that 1.5 months waiting when I was 90% certain that the cancer was on the move again! Some old rules they follow must change! At the moment, though, the new hormonal combination seems to be working, so I'll leave the biopsy for now. Maybe a bit of denial here because I believe that ER+ and PR+ BC are the lest aggressive one and I was tested to be 100% positive on both.
I was offered RFA (Radio frequency ablation) for my liver mets, which my onc thought at the time was the best option for me. (As I stated in my prev post, this has been hold of). I would however, be interested in info related to Cyberkinfe (my mum somehow thinks this is much better than RFA). So, will PM you.
Thanks for starting this thread.
xx