i actually had a single lung met.But,i had to go through 2 oncologists before finding one that agreed to treat me aggressivly.i did not give up i demanded it.i came armed with the studies showing that surgery,in my case,is standard of care!i suggest you research as well.just google RFA or cyber knife for breast cancer metastasis.copy them and bring them with you.if one doctor says no?go to another.whats that saying?the squeeky wheel gets the grease?
like i mentioned before,and one doctor is the article says this as well,the medical community is now realizing that surgery for a subset of woman with stage 4 disease is warranted and could have a huge impact on long term survival or in some cases a cure.
Thanks Finty and 2x for all your helpful information,
Yes, I am being treated privately. I have an appointment with my onc next week and will ask about Cyberknife then. I’ll PM you Finty if I need more info on the name of your consultant.
I feel fortunate to be offered RFA as it is, but will see if they’re also considering Cyberknife for me - apparently King’s in London has the best Liver Op department in the country - just in case anyone else is on the lookout for good specialists.
I have a CT scan on Weds and am hoping that the tumours will have shrunk further. I’ll keep you all posted.
I was dx at stage 4, given very aggressive treatment, my surgeon and onc both agreed removing the primary would Give me a better fighting chance, they did stress this is not the case for everyone, as not everyone are young or fit enough to tolerate treatment and a lower immune system etc can make things worse. What I find confusing with all these posts are; my onc keeps stressing to me once you are stage 4 the cancer is Metastic, which means its systemic and the the only way to treat the systemic part of it is with chemo or targeted drugs herceptin etc. I had a very good success rate 90%, but which still means I have 10% of the cancer still in circulation in my lymph and blood stream. It could remain dormant it could be contolled by hormone treatment for years, but it is still there… unless they have found a cure and not told me???
With regards the high dosage targeted radiation treatment, and I am probably being very naive here but the standard radiation treatment you are given on your mastectomy site, is that not “curative” and will kill all the remaining cells? I understand and sympathise completely with ladies who have liver mets, if you can have the cyberknife instead of an op because it’s so targeted fantastic… Saves a lot of unecessary pain and recovery time.
But what is the difference in reality using the same radiation treatment on your bone mets as the treatment they give u on you chest, or am i completely wrong?!?!
Hi Mackers,
just thought I would respond to the points you raise.
Firstly with regard to your puzzlement about the term ‘curative’ in relation to stage 4. I agree that the term curative is a bit misleading. Obviously, once cancer has metastasised and is in the blood stream/lymphatic system it is systemic, and currently incurable. My Oncologist said that when he uses the phrase ‘curative treatment’, what he means is keeping a patient alive long enough that they die of something else. Now I know some would say that is also the aim of the palliative approach, but in fact there is quite a difference between the curative and palliative approach. In general, the curative approach is principally aimed at longevity (even if achieving longevity sometimes involves reducing quality of life during aggressive treatment). This is quite different to the palliative approach, which places maintaining quality of life over longevity. Also, the curative approach is usually fought on two fronts - systemically with chemo etc, and locally to prevent metastases progressing with radiotherapy, endocrine therapy, bisphosphonates etc.
Obviously there are arguments on both sides, about what is the best approach. Some people are prepared to go through fairly awful treatment in order to get more time, and others are not. Actually, I am in touch with a woman in America who was diagnosed with metastatic BC twenty one years ago, and was treated at The University of Texas Anderson Cancer Centre. However, the treatment she received was very aggressive indeed, and many, including myself, would not want to go through such a tough regime (in fact I doubt any hospital in this country would agree to the same type of treatment).
Secondly, with regard to your puzzlement about the various uses of radiotherapy. Again your point is understandable because as you point out, conventional radiotherapy can be, and is, often given at a curative dose to the mastectomy site/lymph nodes. The reason that patients are referred for specialist types of radiotherapy like Cyberknife, Gamma-Knife, or TomoTherapy, is that their metastases are in places considered too risky for conventional radiotherapy (e.g, lungs, liver, spine etc). For example, in my case, I had Cyberknife at a curative dose for three skull mets - because doctors were concerned that if they tried to treat the mets curatively with conventional rads, it would have damaged my brain (because conventional rads lacks the precision).
Hope this clarifies things.
Tnx very much for your post, you know yourself being stage 4 you have a real compassion for other women in the same situation and I feel that on occasion women like myself can read these posts and feel that they are not being given the correct treatment and other ladies seem to be being “cured” and this can be very stressful.
Your post says it how it is and I found it Very informative.
Anyway I’m going to carry on with my radiotherapy, herceptin, tamoxifen and Zometa and thats just this week…!!!
Hi Mackers,
Re your comment, “I feel that on occasion women like myself can read these posts and feel that they are not being given the correct treatment and other ladies seem to be being “cured” and this can be very stressful”. I really hope that you and others don’t feel that. I hope my clarification of how certain Oncologists, like mine, use the term “curative treatment”, reassures you. I can assure you as a person who is undergoing this “curative treatment”, I am under no illusion that I will be cured - and I suspect most of us who are being treated this way just hope for longer survival.
Also, I would hate people to draw the conclusion that they are being short changed in someway by their medics. There are various approaches, and as yet, there is not a single person on earth who can say what is the right or wrong way to treat metastatic cancer.
Personally, I find it very useful to read about the type of treatment others receive, because as they say, knowledge is power.
There is quite a difference in the two types of radiotherapy, in that high dose conventional rads usually can’t be repeated, as the damage to tissue is too great, but Cyberknife can. I had high dose regular rads to a met in my spine last year on the understanding that if the tumour returned, I would then be able to treat it with Cyberknife - otherwise I might not have gone ahead. I don’t think Cyberknife is likely to replace conventional rads as a treatment for primary breast cancer post surgery - my radiologist certainly doesn’t think so. I don’t know enough about radiotherapy dosages but I suspect the dose to kill the odd stray cell after lumpectomy or mx are lower than those required to destroy a tumour - I would be interested if anyone here knows whether that is the case or not.
I completely understand your comment about people maybe thinking they are not getting the right treatment - and I had avoided commenting on my experience for quite a while until a few others joined the forum who had similar experiences. It’s a very difficult issue, but on balance I decided there are quite a few newly diagnosed stage 4 posters who were unaware there were alternative approaches to treatment, and might benefit from knowing more about oligometatastic disease. It is very difficult if some then aren’t able to access treatment, but I think things will only change if enough people know about it to make a fuss, and at the moment precious few do.
I also think it’s far too early to know whether an actual “cure” - ie long term remission - can be achieved, but I know some oncs including mine think it is possible. Mine regularly uses the phrase “if your cancer comes back, and it may not” - she genuinely believes I have a chance, however tiny, of beating this. There are so few people that have taken this approach - for instance I believe I am the only person in the UK to have had Cyberknife for bc bone mets and early Avastin treatment - that we just don’t know what is possible yet.
I came across Cyberknife by googling like mad after hearing my breast cancer had spread to my lungs. What I read did excite me, it did make me wonder if perhaps there was a cure and I felt optimistic for the first time since hearing the news. This was all information coming from Amercia, I could find nothing relating the the UK and the NHS.
Thankfully I found Finty, Lemongrove and 2X on here and have learnt so much about the facilities here in the UK and some real practical help in trying to establish whether the cyberknife may or may not be appropriate in my case.
If anything, these lovely ladies have helped me take a more realistic and pragmatic view.
Interesting thoughts on the difference between ostensibly palliative and curative treatment. I think it’s important to point out that the line between the two isn’t clear cut, and that palliative treatment also aims to lengthen life as well as maximise quality, and as such, may include aggressive chemotherapy, radiotherapy, hormone treatment, surgery and medication to control symptoms. It doesn’t mean the medics have given up on you, but for lots of women who haven’t got very limited mets, it is what is offered now. Of course it is really important to ask lots of questions and know about new treatments but also to stay realistic. For example, at the moment I will have as aggressive treatment as I can tolerate but know may be a time when I change my mind.
Best wishes,
nicky
I hv just wrote a reply but it seems to be lost in the cyber abyss!!!
Wendy… So glad your feeling more optimistic, I was not in anyway trying to put a downer on the treatment for you, am very sorry if that is the way it came across… The cyberknife sounds like a great option for you, hope whatever you decide to do goes really well and is a complete success. My surgeon has a women on her books with bone and liver mets and has been treating her for well over 10 years now, this cheers me up no end… not that the poor woman has mets obviously, but she’s still going strong!!! So I think there are lots of positive options for us all now, especially with new treatments…
Finty… am hving radiotherapy tomorrow on my chest, think it will be high dosage as my breast was very diseased not just a few stray cells unfortunately… Will ask onc tomorrow abt dosage etc as seeing him first to ask him about my rib, even though it’s showing signs of healing on cat scan it still really hurts most of the time… Will let you know what he says abt high dosage radiotherapy for chest etc vs cyberknife be interested myself. I know in US ladies having been using cyberknife for bone mets for a while now, but they seem to be more cutting edge than us generally…My other met on my pelvis has healed and doesn’t bother me, not surprised after all that Taxotere!!! I’m always have something seen to, looked at or operated on at the moment!
Chilli, thanks for posting the link. Seeing it reminded me of two snippets of information I meant to share with others.
(1) In the clip there is reference to a quote by Dr Judah Folkman, who some will know is the scientist who proved that tumours need a blood supply in order to set up shop. He also went on to develop the first anti-angiogenesis drug to stop tumours establishing a vascular system (Endostat) - which eventually gave rise to Avastin (which is what the lady in the clip mentioned). Recent research has shown that although Dr Folkman was right about a tumour needing to set up a blood supply, it appears that tumours don’t actually need to attach themselves to a blood supply to do this, because they can generate their own blood vessels. The article I read said this explains why anti-angiogenesis drugs haven’t proved as successful as Dr Folkman originally hoped they would be (Dr Folkman claimed in the press that understanding angiogenesis would eventually lead to a cure for cancer). Anyway, it appears that one of Dr Folkmans star pupils (Dr Lee), has developed a drug called Endostar, which can tackle the problem of tumours establishing their own blood vessels. Apparently, it will also be cheaper than Avastin, and wont have the same side effects (I think it’s currently in stage 3 trials).
(2) Dr Folkman died in 2008, and I read recently that the Chinese have bought the rights to all his work, so obviously they are interested in the field of anti-angiogenesis. I suspect that when a cure for cancer does come, it will be the Chinese who discover it, because they are prepared to keep throwing money at research. The problem researchers have in this country is that many funders want to make a quick buck, and withdraw funding when results don’t materialise.
I’ve read good things about Endostat and was hoping it was nearing completion of clinical trials. Here is a link to Dr Li’s Angiogenisis Foundation if anyone is interested - you can sign up and receive email updates:
It’s a not-for-profit that is exploring all aspects of angiogenisis, not just cancer related - they are also doing a lot of research into anti-angiogenic foods and their diet recommendations are on the website. And before anyone accuses me of linking to a wacky cancer curing website, here is the faculty of the Angiogenisis Foundation:
Finty: managed to get my radiotherapy plan third time lucky!! Yeh
Hope you treatments going really well…
I asked the radiotherapist she said it was a different amount of radiation ladies receive on their chest wall than is used traditionally on bones, pain relief etc. He’s giving me another bone scan and cat scan to determine if rib is deft a met as I’ve had it so long?? Does anybody know except for bone biopsy is there another test that is 100%, as even PETs give false readings sometimes??
Ive just had a mx, now on radiation. Im triple positive so Just hoping the tamoxifen and herceptin will kill the remainding 10% of the cancer or at least control it for a long long time.
Everyone have a great day in this lovely weather.
Xxxx
It’s a very good question about 100% accuracy in diagnosing mets from scans. I have no experience of PET scans, but I know from my own experience that bone and CT scans are not fool proof. My advice would be to make sure that the same radiologist is looking at both the bone scan and the CT scan side by side, so any hot spots on the bone scan can be compared precisely with the same area on the CT scan. My two bone mets were missed because the bone and CT scans were looked at separately by two different people. CT scans don’t pick up very small mets, but I would imagine if you’ve had pain in the rib for a long time, if it’s a met causing the pain, it would be large enough to show on a CT scan.
False positives with bone scans are very common - hot spots can be caused by things other than mets, and my two hot spots were assumed to be arthritis. I’m not sure if there are false negatives - I haven’t heard of it, but I just don’t know.
I know bone biopsies are not usually offered, and can be painful and sometimes dangerous (spine especially). Sometimes bone mets are just diagnosed by how the area responds to treatment - it’s how my two missed ones were picked up, because they were showing sighs of healing.
I said that I would be updatting my progress as I go along so here it is
*UPDATE*
March 23rd 2011 CT scan - NED
Brain,bones,liver and 1 1/2 lung CLEAR
No changes from last CT scan in September 2010 (except the single lung met)
Removed the single lung met with a lobectomy january 2011
Currently on Femara,Zometa(osteoperosis prevention)Metformin and supplements
It will be a year in June that I discovered I had secondary disease.I had a 4.5cm single lung metastasis bones,brain,liver were clear.Let the good times roll
