Best treatment centre in the world for adenocarcinoma of the lung (NSCLC)

Home Forums Lung Cancer (old) General Lung/Thoracic Cancer Questions Best treatment centre in the world for adenocarcinoma of the lung (NSCLC)

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March 29, 2012 at 12:55 pm  #8351    

ross

Hi Dr West,

My family recently received some very bad news in that my father has been diagnosed with stage 1 adenocarcinoma of the lung. I’d firstly like to thank you for providing such an excellent website, your articles and comments have given me & my family great re-assurance over the last few days, and the world is so much richer for people like you and the great deeds you & your colleagues perform daily.

The core of question is where globally the best treatment centre/specialist for this disease currently is, I give full detail as to why I ask this below:

We were extremely fortunate in that my father’s illness was caught very early and the rogue nodule is less than 3cm (2cm to be specific). Consequently it has been recommended that we go through the “surgery only” route and that they plan on entering my father’s body through the shoulder blade to remove the growth (outside the lung), he is a fit 59 year-old outdoorsman who isn’t carrying excess weight and still skis/fishes/cycles, etc. In other words he lives a non-sedentary lifestyle and should physically have no problem dealing with the surgery.

Unfortunately healthcare in Ireland tends to lag behind the rest of the developed world, and we have some very sad stories concerning friends who are no longer with us who received very poor advice from Irish doctors.

Having worked very hard all his life, my father is fortunate to be able to afford the best treatment and latest practices the world can offer wherever that may be. We are currently having his records checked by the Mayo Clinic, but would like to get an additional opinion from another highly regarded cancer treatment clinic.

Consequently could you or any of your colleagues kindly recommend any lung cancer treatment centres that we could contact?

As a side-note my father’s early diagnosis came about due to a “once every 5-year scan” with a company called life-scan that performs full-body CT scans. This service is not available in ireland, so were he to have availed only of irish medical services for his general health he probably would’ve received a terminal prognosis a few years from now. As a consequence of this every employee in the company he owns receives free flights & scan in the UK every 5 years, so some good has come out of it at least! But taking this into account may help you understand why we are so determined to get a second-opinion outside of our beautiful but medically incompetent country!

As you might imagine I would be overwhelmingly grateful if you and your colleagues could please find the time to consider my query, I can assure the world is a better place with my father in it!!

Many thanks for your time, and congratulations again for providing such an excellent website for the huge volume of people who have had their lives touched by cancer.

Best wishes,

Ross

March 29, 2012 at 1:08 pm  #8353    

Dr. Weiss

Ross,

I visited Ireland with my grandparents in my youth and greater enjoyed my time in your country. Regarding screening for lung cancer, you might find data from the NLST screening trial interesting: http://cancergrace.org/lung/tag/lung-cancer-screening/ Regarding pan-scans for unselected patients, I am more skeptical. There is risk of finding non-cancerous radiographic findings that don’t threaten the patient, but can lead to biopsies and procedures with real potential for harm. For this reason, I have strongly discouraged my father from getting screening pan-scans and do not get them myself.

I don’t think that there is one best lung cancer facility in the US or in the world. If you’re looking for a remote review/2nd opinion, I think that Case Western might also offer them. Regarding surgeon choice, we typically value a dedicated thoracic surgeon (not a general surgeon who also does a little cancer and not a general cardiothoracic surgeon) who does a high volume of surgery at a center that does high volume.


Jared Weiss, MD
Lead Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or University of North Carolina. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 29, 2012 at 1:24 pm  #8354    

Dr. Aggarwal

Dear Ross,

I’m happy to see that your dad’s cancer was detected early. I agree with Dr. Weiss that there is no ONE best lung cancer facility in the US or the world. You should try and see an experienced thoracic oncologic surgeon who has performed many similar surgeries and has the required skill set.

All the best,

Dr. Aggarwal


Charu Aggarwal, MD
Assistant Professor

Views expressed here represent my opinion, not those of GRACE or University of Pennsylvania. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 29, 2012 at 2:34 pm  #8355    

certain spring

Hallo Ross. I’m sorry to hear about your father, though glad the cancer has been caught early. I understand your wish to get the best for your father, but in an ideal world you would not want him to travel too far for his surgery and treatment. I hear what you say about problems with health care in Ireland – I’m in England, and could swap stories with you, some of which I’ve heard about through GRACE.
However, you may be able to find valuable expertise close to home. When I wrote to an internationally known lung cancer expert for advice on who to see (this was for an oncologist, not a surgeon), one of the suggestions that came back was Professor Ken O’Byrne at St James’s Hospital in Dublin, so that would be my first suggestion:
http://www.stjames.ie/Departments/DepartmentsA-Z/M/MedicalOncology/DepartmentOverview/
Depending on whereabouts you are in Ireland, I can personally recommend Dr David Breen at the University of Galway – he is a respiratory physician, but my experience is that respiratory and surgical teams work very closely together.
Finally, if it would be helpful to have the name of a particular thoracic surgeon, I have heard good things of Simon Jordan at the Brompton hospital in London. The Brompton is linked with (and next door to) the Royal Marsden, which is probably the leading centre for cancer expertise in the UK. All best to you and your father.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

March 29, 2012 at 3:29 pm  #8358    

safille

Dear Ross,
So sorry about your dad’s diagnosis. A few thoughts, as one whose father lives in France and has received treatment there and at top places in the US. My husband and I have now walked through with, and served as the medical researchers for 3 of our 4 parents with a severe cancer diagnosis, and we’ve come to some pretty strong opinions (take them just as opinions, but since I’m not a doctor I can perhaps say things more strongly than I ought!):
–if you are able to and have the resources, it’s worth traveling to a top-notch center, and yes, that often means the US. My father has had good, sometimes excellent medical care in France (where he received his original diagnosis of lung cancer and had his lobectomy in 2005, and where he has intermittently received treatment, as he lives there). HOWEVER, it took getting a second opinion at Johns Hopkins in 2006 for a full diagnosis to let us know the extent of the spread of the cancer. There can be a bias in Europe ( I don’t know about the UK, but in other parts) against telling the patient the whole story if they don’t think things can be done to address it. Doctors in the US also tend to be more aggressive; on two occasions now it has been a second opinion from Mayo that has precipitated the treatment that my father needed. Additionally, while there are clear benefits to a socialized medical system (it raises the treatment level for everyone), there is the disadvantage that acute care may not be on par with what you would find in the US. In our case, the doctors at Mayo were able to perform an incredible surgery on his spine that the drs. in France could not/would not attempt (and instead of involving one surgeon, Mayo pulled together a phenomenal team of 4–an expert in opening up the site, an expert in removing bone tumors, an expert in decompressing nerves, and an expert in orthopedic reconstruction). I do not think my father would be with us today if we had not gone to Mayo. Time after time, we have found the best approach, if feasible, is to put yourself in the hands of the best people you can find, who focus on that disease specifically.
–your best chance of a good outcome is having a team of 1) great surgeon 2) great pathologist 3) great radiologist and 4) great oncologist. If any of those are off, it can mean you don’t get all the cancer, or you get the wrong diagnosis, or you get inadequate treatment. With all the research out there now, I personally think it would unfortunate not to go to someone who is on top of the latest, and that usually means a top-notch center. I also would be skeptical of the “just surgery” approach without knowing a whole lot more about it, because a lot of studies have demonstrated the advantage of adjuvant therapy. Most of these places are set up for international visitors, or visitors from other areas of the US, and they have hotels or other accommodations at a range of prices, often attached to the hospital. Another advantage is that once you are there, they set up everything for you in a timely manner (we flew my dad back on an emergent basis, and they would have been ready to operate the next day if necessary. as it was, all the tests, consults etc. were completed and surgery performed within a week!!!). You don’t have to go chasing records, doctors, trying to get them to talk to each other etcs. which, trust me, can be incredibly time-consuming and frustrating. Additionally, you usually have close to immediate access to the tests and care you need, once you are there. IN other parts of the world, because machines etc. are more scarce, you can be looking at a wait of weeks or months for certain types of treatment. Obviously, there are excellent doctors all over the world, but if you can do it I really think your best shot is to go to one of the best centers. You can look at the centers of the docs affiliated with the site, and/including these: Mayo Clinic (Rochester), Memorial Sloan-Kettering in New York City, MD Anderson in Texas, Massachussetts General in Boston, Johns Hopkins in Baltimore, MD, and University of Colorado in Aurora (we have worked with docs in 4 of these places). As it happens we just today had a follow-up Remote Second Opinion from Dr. Ross Camidge at U of Colorado at Aurora, who like some of the other docs involved with this site is perfectly wonderful. They have a formal program for a remote opinion, and I believe some of these other hospitals do too. Of course there are other great places, but I think it would be really hard to go wrong at any of these.

OK, I’m sorry to ramble on, but if you can swing it, I would really encourage you to think about one of these places as a best, initial shot at tackling the cancer, especially if it’s early stage and possibly curable. All the best to you and your dad, whatever you choose.

March 29, 2012 at 6:32 pm  #8365    

Dr. Weiss

Of further note to foreign patients seeking care in the US is cost. Cost structure in the US is funny. The gist is that hospitals charge ridiculously higher than the real costs so that insurances can claim that they’ve negotiated big discounts just for their clients. The whole thing would be more innocent if it was just like the department store where the price is marked up, then everything is some percent off, making you feel like you got a bargain. The problem is that the uninsured, be it because they’re from abroad or because they’re poor get hurt. Some centers specifically address this problem by giving deep discounts to patients without US insurance. This is done at many places to avoid overcharging the poor, but has the secondary effect of more reasonable pricing for foreign patients.


Jared Weiss, MD
Lead Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or University of North Carolina. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 29, 2012 at 7:25 pm  #8372    

Dr West

I strongly agree that there is no best institution. I can understand the desire to have more control in an all too uncontrollable situation, but it’s like identifying the best song or the nicest painting there is. There are many great places.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 29, 2012 at 7:59 pm  #8373    

Craig

There’s isn’t just one. It depends on what you need.

For example, if you want the best for ROS1- and ALK-driven drug-targetable mutations, I’d recommend Massachusetts General Hospital in Boston (and Dr. Alice Shaw in particular), although I’m clearly biased because I have that very rare ROS1 mutation and am being successful treated there.

If you want the best EGFR-driven lung cancer experts, it might be someone else somewhere else. Ditto HSP90 inhibitor treatments, ditto monoclonal antibody, ditto immunotheraphy treatment (even Cuba would be a contender for one of the types of those, though none seems very remarkable yet), ditto deep-IR700 photodynamic treatment, ditto PRRT treatment for neoendocrine tumors of the lung (possibly Germany for that one), ditto ex-vivo functional testing if you’re having a difficult time picking a chemo and can offer a chunk of live tissue, etc. etc.

Best hopes,


- Stage IV never-smoker ROS1-driven adenocarcinoma (mBAC subtype, “indolent” ~half-speed, 3+ yrs)
- Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (2.5+ yrs)

March 29, 2012 at 9:28 pm  #8375    

safille

I completely agree that there are many great places, and that certain ones focus more on a given approach. However, if you are starting from scratch and have no idea what type of lung cancer you’re really dealing with , what your best treatments are etc., you are in my opinion much better off in a well-established, high-quality academic center that will have the ability and knowledge to lay out your options and have in place highly qualified docs to carry them out. Like Dr. Weiss said (I paraphrase) you are far better off with a thoracic surgeon in a top-notch center who has done 1000′s of such procedures than with a general surgeon, however gifted, who has far less experience in that particular area. Same goes for oncologists, however skilled–there is simply no way for a busy, practicing generalist to have the same level of expertise and awareness in every area of oncology that a more specialized doc. can command. We have found in dealing both with lung cancer and with lymphoma that although we have had some excellent local oncologists, they were not able to put in the specialized research and thus be aware of as many options as we were from seeking the highest expertise available (including from this site, which is the best of its kind I have found (and in case it wasn’t already clear, I’m a bit of a research nut)). It’s a simple, practical matter of time. And the larger centers typically have more reliably experienced pathologists, oncologists, radiologists. There are no guarantees, but there are definitely greater probabilities in play!

March 30, 2012 at 12:04 am  #8376    

cosmo72

Hello Ross this may be of interest Royal Brompton Hospital in London has a machine nicknamed Lung Zapper …..my nephew recently had his 3 tumors removed by this laser and his latest CT was all clear
http://www.dailymail.co.uk/sciencetech/article-1311146/Lung-Zapper-fires-equivalent-power-70-ovens-tumours-size-postage-stamp.html

March 30, 2012 at 1:37 am  #8378    

certain spring

I am grateful on my own account for the excellent advice from safille, who obviously knows what she is talking about. My thought process was that it is better to be treated close to home, for all the obvious reasons but in particular because I was advised on dx not to fly long-distance (risk of blood clots). Maybe that is not so relevant for someone at Ross’s father’s early stage – I would be interested to know what the doctors think?
I agree with almost everything safille says – except that my experience in the UK is of complete openness in respect of dx and possible outcomes. I have been briefed in the plainest terms from the start. I also agree with her that from a European perspective, US surgeons are seen as far more adventurous, not to say aggressive, in what they are prepared to do.
cosmo72, I’m so glad to hear about your nephew. I am not banging the drum for the Brompton/Marsden (I’m not treated there), but they do fulfil a lot of the criteria safille listed, and would not involve a transatlantic flight! Nor am I banging the drum for Professor O’Byrne, whom I haven’t met but whose research interests should meet even safille’s high standards!
http://www.tcd.ie/IMM/translational_bioscience_2003_2008/dr_obyrne.php


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

March 30, 2012 at 5:35 am  #8391    

cards7up

Is it possible for him to have the VATS procedure? You mention CT scan but has he had the biopsy to get to that diagnosis? Staying close to home is the best thing to do. There are protocols that are followed with each stage of LC and surgery would be first for stage I with testing of lymph nodes to be sure of no spread. If he’s stage 1, then chemo wouldn’t follow. Has he had a PET and/or MRI? Here in the US these are all used in arriving at a complete diagnosis. Wishing you the best. Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011. Local recurrence, surgery to remove LRL 8/29/13. Chemo carbo/alimta x3.

March 30, 2012 at 6:35 am  #8393    

Craig

For what it’s worth, my strategy is that I use a ‘local’ lung cancer-specialist oncologist *plus* 2nd opinions and consultations and trials from super-experts elsewhere for specific things.

So I have conventional oncology care in Philadelphia and travel monthly to Boston for a research trial with the top superdoc in the world for drug-targetable mutations (although that’s an obviously-biased opinion). If I needed a different kind of super-expertise, I’d be willing to travel to wherever that is. When I’m no longer fit enough to travel to promising treatments, my local oncologist will be able to provide conventional care. I do recommend, though, using oncologists who specialize in lung cancer because otherwise they wouldn’t have time to both keep up on all the new research and treat patients.

Best hopes,


- Stage IV never-smoker ROS1-driven adenocarcinoma (mBAC subtype, “indolent” ~half-speed, 3+ yrs)
- Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (2.5+ yrs)

March 30, 2012 at 8:22 am  #8396    

ross

Hi guys,

I just want to thank you so much for all your support & guidance, I’m pretty overwhelmed by your kindness. I’d also like to pass on my father’s thanks too (he and computers don’t get on well enough for him to do so himself!). He can’t get over the support we’re receiving from the cancer community and you’ve done so much to help reduce the sense of helplessness we were all experiencing.

Dr Weiss, thankyou so, so much for your advice, Dad was recommended a general cardiothoracic surgeon so we’re already talking to dedicated thoracic surgeons off the back of your advice and looking at Royal Brompton Hospital in the UK as it deals with the highest number of thoracic surgeries in the British Isles. I’m also very happy you enjoyed your visit to Ireland – it’s the cheapest it’s been in years if you were ever to consider a return trip!

Dr Aggarwal/Dr West, thankyou also for confirming Dr Weiss’s opinion, it is extremely re-assuring to be able to have access to professionals operating at your level and it has given us fantastic piece of mind. Many thanks for taking time out of your no doubt busy schedule to bring a shaft of light into a very tough week.

Many thanks also to Certain Spring, I went to Trinity myself so will attempt to use my acquaintances there to make contact with professor O’Byrne, as my father’s illness certainly appears to be right up his alley. Thank you so much for letting us know about someone so specialised in this area right on our doorstep! I of course wish you all the best with your own disease and treatment choices.

Safille far from being put off by your “rambling” I’m again humbled by the time you took to answer my question, along with the fantastic information provided within. We’re going to continue to get a second opinion with the Mayo clinic & most likely Brompton. Again i can’t express enough gratitued for your willingness to share your experience with me. You & your husband’s parents would appear to be unbelievably lucky to have people like yourselves helping them through their disease.

Many thanks too Craig, you have encouraged us to harass our doctors for a greater depth of information regarding my Dad’s mutation and the more esoteric treatments that may be out there! Again I wish you nothing but the best with your own treatment and will continue to update on GRACE should i come across anything that may benefit the community off the back of my research.

Cosmo72, thankyou for the advice on Royal Brompton and the “Zapper”, we’re following up on this with the hospital and will be exploring our treatment options there thanks to your advice. I also wish you all the best with your own treatment.

Cards7up/Judy, he’s had a VATS, biopsy & PET. They’re happy there’s no spread to the lymph nodes, but plan to dissect one when performing the lobectomy “to be sure, to be sure”, as the Irishman says! I hope your own treatment goes well and you get many years watching those beautiful children in your profile grow up.

Again I’d like to sign off by thanking you all again so, so much, you have done so much for us with your collective paragraphs. In a world so consumed by badness and dubious morality it is heartening to come across so many good people prepared to help a stranger and shed light on all the confusion that comes straight after a member of our family gets a cancer diagnosis for the first time.

I will keep you up to date on our progress and treatment choices.

Without wanting to lay it on too thick i just want to thank you all again, my command of the english language is unfortunately too limited for me to express the depth of gratitude I feel to you all, so for one last time thank you all again so, so much!

Thankyou!

Ross

March 30, 2012 at 8:51 am  #8397    

Sherry

Ross, Welcome to Grace. I’m sorry for the reason that you are here, but I am glad you found us. I have nothing to add to the information you received, but I did want to tell you that 3 years ago, at the age of 49, I was diagnosed with Stage 1A. The only treatment I have had is an ULL and I have had good scans since then. I completely understand the devastation and hopelessness you feel upon this type of diagnosis, so I wanted to let you know that there are those of us out here that faced the exact same thing and are here to tell you about it. If you have any questions I can help you with, I would be happy to do so.


ME: Diagnosed Stage 1A in July 09, ULL, no further treatment. Diagnosed with breast cancer in Feb. 11, again Stage 1. All scans were clear until headaches started in April 2012. In July 2012 was diagnosed with a metastatic brain tumor from lung, surgically removed and treated with cyberknife. Now on Tarceva. Clear scans to date. DAD: Diagnosed stage IV in Dec. 09, was on Tarceva until April 2012, then Alimta once every 3 weeks. November 27, 2012 entered the kingdom of Heaven.

March 30, 2012 at 12:32 pm  #8422    

safille

You’re very welcome, Ross. We too have been amazed at the kindness of others in the cancer world. It sounds like you’ve made some great progress. Certain Spring, you always respond with such grace (I’ve noticed on other threads as well), and Craig it sounds like we have a very similar approach. So glad both of you have targets to go after. I just wanted to clarify to be sure it was clear that I’m not saying you HAVE to go to the US for the best treatment. I am, however, absolutely convinced of the value of top-notch centers (and if you are in the highest-volume center for the UK I would think you are doing well) & second opinions (like what you are getting from Mayo). In practice, similar to Craig, we have sought the expertise far and wide, and then made our decisions accordingly. Sometimes that has meant (like the surgery I referenced at Mayo) transatlantic travel because, even with the risks, that was our very best shot and not offered anywhere else. On other occasions, such as more recently, the remote second opinions (including have scans and tissue samples reviewed or tested) have guided us to options that were available locally (vertebroplasty, herceptin vs. other chemo) but might not have been recommended to us without the second opinion. Of course, you have to have a local oncologist with the humility and creativity to work with you and take on board other expert opinions! (which we have been fortunate in). Mostly, having the second opinions/expertise arms YOU with the ability to make the best choice among the options out there, and weigh all the variables more accurately. It sounds like you are doing a wonderful job of that with your dad, and we’ll look forward of hearing of his progress. Best to all of you.

March 30, 2012 at 3:33 pm  #8429    

cosmo72

Hello Ross
Here is a bit more on Royal Brompton & Dr George Ladas

http://www.rbht.nhs.uk/about/our-work/publications/annual-review-0910/lung-division/

wishing your Dad all the very best

Lesley

March 30, 2012 at 3:42 pm  #8430    

Christineleeds

I am in Leeds and although We are sclc I am told that if Gamma knife or stereo active? radiation is required St James here is a leader in the Uk.
Christine


Husband Philip dx 10/10 ltd SCLC.Cisplatin/epotiside with twice daily radiation 1/11 PCI 3/11.Pneumonitis .Progression 11/11 carbo/epotiside 1/12 Radiation 6/12.Very bad chest infection following rad which could not be controlled and SIADH.Died 8/12.Was very active and quite well for most of treatment up till the last week.

April 2, 2012 at 9:03 pm  #8539    

babysis

Welcome Ross, and I am so sorry to hear about your father. You now have people all over the world (even St. Louis) to encourage you through this new experience, though none of us would have chosen it. Researching the best care is wonderful, and your father is lucky to have such a dedicated family. Remember to be kind to yourself along the way, (Enjoy a cup of Bewley’s) and take time to reflect on one positive thing each day. It’s been 27 years since I spent a summer in Dublin, which was a delight


Brother 55y dx 12/11 with Stage IV NSCLC, PET scan showed no mets. Further MRI showed 2 mets to the brain, CT to the abdomen was clear. Jan/Feb 2012 3 weeks of WBRT, then clinical trial of 3 weeks intensive radiation to the lung tumor. 03/12 abdominal CT shows mets to kidneys, pancreas, heart. 04/12 brain mets have shrunk, but physically weakening. Passed away 04/29/12.

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