Just Diagnosed with LUNG METS any advice on pioneering treatments?

Hi all
Well. I’m sorry to have to be back here :(. Just a quick medical type description:
Primary Breast Cancer diag 15/02/11 - no node involvement, no vascular, clear margins on Wide local excision, tumour 48mm. Chemo - FEC x 3 TAX x 3 - 15 Rads, 5 boosters, 5 years Tamoxifen. 87% chance of still being here in 5 years time. Great Prognosis.
Secondary Breast Cancer diag 12/02/13 - started with mid shoulder pain on right side, ignored as assumed cos of work and felt like pulled muscle, wasn’t aware this was a potential symptom of Lung Mets. Then 2 weeks later started with severe shortness of breath, sent to hospital for bloods and xray. Xray showed 2 suspected Lung Tumours of several cm in size. Lungs drained as Pleural Effusion (water on lungs) present, took out 1300 litres out of right lung. Sent for testing, was a “false negative” - no cancer cells in fluid tested, but apparently this happens in 50% of cases. Now on Oramorph and Zomorph to control pain from tumours as they are also invaded pleura so I still have shortness of breath and pain. Insisted on CT guided lung biopsy as not happy being told they assume it’s cancer because they’ve ruled out everything obvious. I think it is, but I need to know for sure.
My onc says that surgery of any kind out of the question because it must be systemic now its secondaries, thoracic work is highly dangerous and too much for people to cope with unless incredibly fit before hand. They say there is nothing they can do other than chemo to shrink tumours down to help with Shortness of breath and switched me from tamoxifen to anastrazole. I’m in pallative care now and expect to live 2-3 years.
My “beef” is that I have looked on t’internet and there are people who have been operated on with secondaries to the lung and i was told this doesn’t happen because “no point” effectively because it’s likely to be systemic.
I am going to ask for referrels to Royal Marsden for them to review my case and see if I am a candidate for Cyberknife on these tumours or anything else that may help to prolong my life.
I’m going to ask for referrel to Royal Brompton for them to review my case and see if I am a candidate for Laser Abalation by George Ladas there, they have had a machine since 2010 that blasts secondary tumours with the power of microwaves and can effectively vapourise tumours.
Can anyone else offer any ideas so I can try and help myself?
Im just not happy with assumptions or statistics when it’s my life in jeopardy. I want to ensure I’ve done EVERYTHING in my power possible to tackle this before I totally accept that there is nothing that can be done other than what I have been offered.
Anybody any advice?
I’m not in denial, I’m not expecting a cure, I just want to throw everything at it and try and extend my existence for a little longer. It does all seem very unreal… so I say I’m not in denial, I’m in disbelief right now.
I just cant take the word of a small town hospital, I feel like I need cutting edge pioneers to say no, accept it.

El Katrano
I am so sorry to hear of your dx I was dx with primary a month before you so went through treatment at same time I pop on here now and again and saw your post. Can’t be of any help sorry but wanted to send my best wishes and hope someone with more info comes along to help. I have about the same prognosis as you had and it just shows that you never know with this b*****d disease. Good luck with whatever treatment you have I really hope to see posts from you for a looooong time yet
BIG HUGS
Jill xxxxxx

Dear El Katrano

I am sorry to read that you have had this diagnosis and can appreciate that you want as much advice and information as possible, please do call our helpline as we have secondary support services which you may find useful to access, you can read about these here along with information which i hope is helpful:

http://www.breastcancercare.org.uk/secondaries?utm\_source=Homepage&%3Butm\_medium=help\_you&%3Butm\_campaign=secondaries

Take care

Lucy

(yes I’m still here!!!)

Just BUMPing for El Kat - someone must have an answer…

Kat - they also have Cyberknife near you at Jimmy’s (Yorkshire Institute of Oncology).

Tolliebelle - *waaaves* - i remember you, hellloooo. Came off bcc forums after a while because i felt it was time to try and move on. Now I am back… Siiiiiiiiigh. Youre right, its a <insert swear=“” word=“” here=“”> disease. i had a great prognosis originally, seems Im in the 13% of my diagnoses where it goes secondary against all odds.<br>
Nothing more I can say about that without getting told off by moderators for using offensive language lol ;)<br>
How are you doing these days ? Xx </insert>

Just noticed your post, I also remember you, just wanted to say really hope you get all the answers and help you need, big hugs to you xx

Kat,
I am really sorry to see you back. I am only a primary lady, so have no experience of secondary treatment, but having been lurking on this site for far too long, I am aware that there are lots of treatments out there, and many seem to live for years with secondaries. I hope that the Royal Brompton helps you. I saw an article on the BBC news site about UK’s poor survivial rates compared with other European countries. There was speculation that this was partly down to less aggressive treatment in the UK. So I think you are right to push for a second opinion, and for access to more aggressive treatments. You are a young woman and have a lot of years to live.

HI I am fine thanks have lymphoedema in arm but not too badly. Keep trying to stay away from this forum and be “normal” again but can’t quite get there! I am really sorry to see you back here and I hope you get all the support and treatment you need I know you will stand up for yourself!!! You better had noone else will! I will keep popping in to see how you are and hopefully you will have some good news to tell us
Hugs and keeping fingers crossed you get the very best there is

Jill

hi my name is lollypop, primary breast cancer dx sept 2010 with IBC had fect taxotere mx then recon plus 15 rads, eight months later it come back in the skin on mx side had the silicone removed and skin then come in skin again same place had ct scan found 8 nodules on lungs. then started taxol for 6 months had another scan and that was clear, then started on capecitabine and tykerb for 6 cycles ct scan again showed slight progression so now started on vinorilbine and hopefully herceptin providing my heart has mended. so what i am trying to say apart from all the set backs i fell well and hoping my next scan is clear again, and always staying positive. xx

El Katrano, really sorry that you have had a secondary diagnosis. Couple of points.
(1) Have your medical team identified metastases anywhere else in your body other than the lung? My Oncologist say’s that Charing Cross Hospital do operate on secondary BC patients with lung metastases, because surgery has been proven to extend survival in this group - but only if there are no mets elsewhere. Maybe you should get a second opinion with a more progressive Oncologist.
(2) Having had Cyberknife RT myself (for skull mets), and been involved in setting up a charity to raise awareness of stereotacic RT www.ukcknetwork.co.uk I have learned quite a lot about Stereotactic radiotherapy, and know it has been shown to be equally as good as surgery for lung mets - in terms of extending survival. The most accurate form of Stereotactic Body Radiotherapy (SBRT), is Cyberknife, as it has a tracking facility that enables it to compensate for a patients movement. Because it is so precise it spares healthy tissue, and can therefore be used at a much higher dose than conventional RT. Unfortunately, Ninja is mistaken in her belief that Cyberknife is available at St James in Leeds. The only hospitals that have Cyberknife machines in the UK are in London. These are the Royal Marsden, Mount Vernon, Barts, The Harley Street Cyberknife Centre and The London Oncology Clinic. The Queen Elizabeth Hospital in Birmingham are hoping to get CK this year, but it will be a while before they can treat patients. Having said that, St James do have other forms of SBRT, and you could investigate these (in fact it might be easier to get treatment funding for these SBRT machines are offer less expensive treatment).
(3) The other thing to look at is Radio Frequency Ablation (RFA) Even the Harley Street Radio-Oncologist who provided my CK treatment thinks that RFA is a good alternative to CK for lung mets.
(4) You mention that your Onc has switched you to a different form of endocrine therapy. Have you requested a lung biopsy? The thing is that many patients assume (including some Oncologists), that when hormone receptive cancer progresses it is because it has simply become resistant to endocrien therapy, and so they then try various other endocrine therapies, sometimes supplemented by drugs to extend the shelf life of these therapies. However, two of the Profs at Charing Cross have told me that it is incredibly common for secondary BC to change it’s receptor (so that ER+ cancer can become Her2+). Consequently it might be worthwhile asking them to perform a biopsy.
The main thing is don’t give up, and don’t be afraid to go elsewhere if you think you are not receiving the best care. We only get one crack at this, and we have to look after out own interests. For some peculiar reason, even when our lives depend on it the British have this habit of cow-towing to the medical profession. As with all professions, we should be respectful of each other, but in my opinion we must learn to be more assertive, and to shop around if we need to.
Best wishes, and feel free to pm me if you want to.
Just don’t give up,

Hi El Katrano
I agree with everything LG has said.I was dx with secondary bc in May 2009( I have exstensive bone mets and had mass in axilla) and have recently been told I have spread to liver.I was told I had possible lung mets when dx but after chemo there was no sign of them so the decision was it may have been cancer or it may just have been scar tissue.My point is take no notice of any prognosis you may have been given, unless they have a crystal ball they do not know.I was dx with secondary cancer from day one and have never considered myself to be having pallative care.I am now on a new drug which has just finished trials and I had to get funding for.There are new treatments coming through all the time and I don’t plan on going anywhere soon.You will find,as you have already experienced that with secondaries you may have to fight to get the treatments you need,will have to do a lot of research and stamp your foot very loudly.I went to Royal Marsden for a second opinion and now have my treatment there.Good luck with your second opinions and hope you get the answers you need,but don’t think this is the end of a normal life…just means it gets interupted by treatment which is something of a pain but it soons becomes part of surviving.

L xx