Throat Cancer stage IV

[alyx]

Hello

This is the second time I am posting ( but the two posts are kind of unrelated )

July 2012: my Thai spouse wakes up unable to speak or to understand anything. Went to the Saint Louis hospital very quickly, where we had to wait an hour or so, before being said that the condition was not serious and would improve within weeks, after a chest x ray came back clean.

As nothing could be done, I refused any further investigation.

I called a friend of mine, the day after, who told me that it was certainly a vascular stroke and it was too late to act as the 3-6 hour window was long gone.

We eventually had an MRI performed confirming that.

September 2012: new stroke ( loss of motor function ) and this time admitted at Bkk General Hospital in Bangkok where he was well treated ( back in physical shape )

Several new transient and full strokes up to February, 2014: complications led to a two month stay in that hospital where he was well taken care from the neurological point of view

During his stay, he complained about pain in the throat. He was diagnosed with a tumour in the tongue / tonsils area. Radiologist, oncologist et ENT surgeons refused to take care of the case because he had undergone radiotherapy and chemotherapy a few years earlier and located too close to the carotid to be operated. The statement was quite simple: let it be. ( but I suspect it was a conflict linked to our insurance: two conditions are not treated: we had to chose whether he was staying for cancer or for stroke )

Eventually an oncologist ( nor a resident physician ) started a chemo treatment two month ago.

I insist on the fact that MRI, Petscan and CT scan were made and every time the report was the same: the size of the tumour was 2/3 cm ( up to the 16 of April ). Also an evaluation by the ENT had been made: although classified as a recurrent cancer ( maybe radiotherapy inducted ) we were told it could be compared to a stage I to II

I started to look for a treatment abroad and, although the price was exorbitant, we decided to go to Singapore ( after a month of messages and phone calls with en ENT surgeon over there ) to have a robotic surgery.

We arrived on Friday, met the surgeon on Saturday morning who within minutes declared that this was a far more advanced cancer than had been assessed by the Thai and would not be resectable through robotic surgery. Of course an MRI and a biopsy ought to be done. Hospitalised, MRI and biopsy were done on Saturday. Very bad news: cancer stage IV. The chemo alone is of no use.

This one day in Singapore set us set back Baht 500,000 back ( yes.....never go there without any insurance. Furthermore the quote you are given is never straight as it involves hospital bills, doctors fees etc.... ) where I had expected a Baht 125,000 at the most. But that is beside the point

The result is that this Singaporean surgeon is opting for a full pharyngectomy ( no more voice box, lap over the carotid, hole at the base of the neck ) : needless to say that the length of the stay involved ( 4 weeks ) and the price of the surgery ( involving cosmetic ) are prohibitive

Adding the risk of a stroke far from Thailand, the possible expense would leave us no choice but begging in the streets of Bangkok or Pattaya ( whichever is the best ).

Question:

1) who is the best ENT surgeon in Bangkok, able to perform this kind of surgery? of course the Bangkok hospital is not on the list.

2) Keeping in mind, it is a heavy surgery and that we might decide not to go for it, considering the poor quality of life, I am looking at the best way to take care of my spouse at home....so any advice is welcome. ( I have read about the other thread related to the Australian guy who wants to stay in Thailand, so it has given me some idea about the matter )

I must admit that we have not been lucky with our choice of incompetent physicians ( thanks to Sheryl, we were able to find an able team from the Bangkok hospital, a year or so after the first stroke )

Thanks

[negreanu]

Hi.

Sorry to hear about your spouse. You probably do not want to hear this but...

Give some serious thought to whether surgery / chemo / radio is the way to go. In the big picture it is Stage IV cancer and I am sure you aware of the prognosis.

I would give some serious thought to switching to palliative pain control and enjoy your time together, as hard as it sounds.

I am speaking from experience here having lost a spouse to stage 3 cancer.

I know you want to hold onto every hope for every treatment however think about the pain and suffering the treatment causes (Expense should also be considered) At some point you just have to say enough and as i said above enjoy the time together.

Best wishes and hope you both make the right choice.

[alyx]

Thanks

I am fairly looking at both paths

I did favour a robotic surgery, although quite costly because it would allowed a quick, painless ( although limited in time) and just looking at the last possibility put frankly I am a bit lukewarm about it. As for my spouse, difficult to say, as he is a fighter ( considering what he has been going through for almost two pro decades I have been together with him ), was looking forward to the robotic option and now...wel I am not sure he understands what kind of pain he will have to bear

I am willing to hear both sides: the only thing we want us spend as much quality time as we can

The question is how

[negreanu]

I personally feel although not a doctor and I only speak from going down the path of chemo and surgery for late stage cancer with my spouse, I would not put them through it again nor if I got late stage would i put myself through it the surgery path and further chemo if required will not extend or improve quality of life substantially for late stage spread cancer.

Should your spouse lose the battle do not leave yourself in financial ruin as that is that last thing both of you would want.

Good luck.

[alyx]

Well, I can't agree more about the financial burden

It hit me hard yesterday.

He doesn't know about it otherwise it would have been a definite no

[thepool]

Sorry

It is always best to choose and remain with a single adviser, swapping and changing creates confusion.

The faith which you appear to have in "robotic" surgery ``is misplaced.

A "pharyngectomy" is major surgery and questions need to be asked about the expected outcome.

Instead of "insisting" on investigation and treatment a serious discussion about prognosis would seem advisable

[NeverSure]

I don't have any answers because I'm not a medical person. I just want to tell you I'm sorry about your situation, and I hope that you find the right answers.

I have known a couple of people who tried to fight late stage cancer against all hope, and wound up only prolonging pain and suffering for a few months, and breaking the bank.

I hope I wouldn't do that, even though we tend to cling to life very tenaciously.

The best to you.

[alyx]

To the pool

You mean the faith I HAD in robotic: it comes from the wrong diagnosis made in Bangkok.

Upon these results I had contacted the right person and prepared the financial. Once here, I was told by that very surgeon that Robotic is out of the question due to the staging ( I didn't ask for further investigation, he did because he considered that reports he had in hands were incorrect )

As for the prognosis, it is very clear : 40% survival over a 5 year period versus up to 6 months if no pneumonia or illness of the kind

Discussing the matter with professionals is a must but considering that most are biased ( due to the amount if money involved ) I am looking at some advice coming from people who are in the know and/or have been confronted with such a matter

This being said I do not understand the part where you mention "....Instead of "insisting" on investigation and treatment a serious discussion about prognosis would seem advisable...." As I am understandably looking for solutions

[ronz28]

I don't know about surgeon recommendations but I would immediately increase consumption of cancer fighting vegetables like onions, garlic, broccoli, phytates like beans, etc. See:

and

http://nutritionfacts.org/topics/cancer/

[alyx]

Thanks. The problem is that he has difficulties to swallow due to ulcers in the throat and....he hates vegetables

But I will try

[ronz28]

Sorry to hear that too. Perhaps blending the food will make it easier to swallow and adding a little liquid smoke flavor to taste but no cancer causing foods like bacon, sausage, nor smoked fish etc.

[Sheryl]

So sorry to hear this.

As I think you know, this is a terminal prognosis with little time left no matter what you decide to do.

Having cared for a large number of patients who had radical head and neck surgery in my day, I have to say that it is an unusually awful thing to go through and not something I would ever, ever opt for myself. Possibly not even if it were potentially life saving and definitely not if the situation were terminal. Much worse than the average cancer surgery.

I really urge you not to go that route, you will I am afraid much regret it as there is an unusually great amount of suffering involved.

If you do opt for this, best Head and Neck surgeons in Thailand appears to be:

Dr. Boonchu Kulapaditharom - http://www.bumrungrad.com/doctors/Boonchu-Kulapaditharom

Dr.Pakdee Sannikorn - at both Vejthani and Bumrungrad Hospitals

Something you might want to ask about which is far less invasive and has had some success in palliative treatment of head and neck cancers is photodynamic therapy (though it will depend on how far down in the throat the tumor is located). Dr. Boonchu above has worked with this and published on it.

http://www.ncbi.nlm.nih.gov/pubmed/20552353

http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/photodynamic-therapy

There is a new targeted therapy agent which seems to do better than standard chemo in Grade IV throat cancer - -though better in this instance means a few more months survival only. It is available in Thailand though likely very expensive. If it has not already been considered/used with your husband, might ask about it. The oncologist with the most experience with it in Thailand seems to be Dr. VICHIEN SRIMUNINNIMIT, a rofessor at Siriraj, who has private hours at Mission Hospital or could also probably be accessed through Siriaj's new private facility http://www.mission-hospital.org/index.php/en/component/sobipro/?pid=164&sid=267:Dr-Vichien-Srimuninnimit or http://www.siphhospital.com/en/index.html

http://www.cancer.gov/clinicaltrials/results/summary/2007/cetuximab-head-neck0607

Regardless fo whether or not he has surgery or other treatments, need to start thinking about pain management and terminal care, bioth of which can be challenging in Thailand.

[wooloomooloo]

If the prognosis is dire then, through personal experience, I wouldn't wish chemo on my worst enemy. I'm serious.

I consider it a rather expedient way to go for no good reason and it isn't pretty.

Sent from my iPhone using Thaivisa Connect Thailand

[Mobi]

Very sorry to hear about this, and my heart goes out to you. You and your husband have suffered much.

After years of observing - and personally receiving - the wonderfully and professionally informed advice from Sheryl, I urge you to go with her recommendations, as I'm sure you will.

I wish you and your husband all the very best.

[nonthaburial]

So sorry to hear this.

As I think you know, this is a terminal prognosis with little time left no matter what you decide to do.

Having cared for a large number of patients who had radical head and neck surgery in my day, I have to say that it is an unusually awful thing to go through and not something I would ever, ever opt for myself. Possibly not even if it were potentially life saving and definitely not if the situation were terminal. Much worse than the average cancer surgery.

I really urge you not to go that route, you will I am afraid much regret it as there is an unusually great amount of suffering involved.

If you do opt for this, best Head and Neck surgeons in Thailand appears to be:

Dr. Boonchu Kulapaditharom - http://www.bumrungrad.com/doctors/Boonchu-Kulapaditharom

Dr.Pakdee Sannikorn - at both Vejthani and Bumrungrad Hospitals

Something you might want to ask about which is far less invasive and has had some success in palliative treatment of head and neck cancers is photodynamic therapy (though it will depend on how far down in the throat the tumor is located). Dr. Boonchu above has worked with this and published on it.

http://www.ncbi.nlm.nih.gov/pubmed/20552353

http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/photodynamic-therapy

There is a new targeted therapy agent which seems to do better than standard chemo in Grade IV throat cancer - -though better in this instance means a few more months survival only. It is available in Thailand though likely very expensive. If it has not already been considered/used with your husband, might ask about it. The oncologist with the most experience with it in Thailand seems to be Dr. VICHIEN SRIMUNINNIMIT, a rofessor at Siriraj, who has private hours at Mission Hospital or could also probably be accessed through Siriaj's new private facility http://www.mission-hospital.org/index.php/en/component/sobipro/?pid=164&sid=267:Dr-Vichien-Srimuninnimit or http://www.siphhospital.com/en/index.html

http://www.cancer.gov/clinicaltrials/results/summary/2007/cetuximab-head-neck0607

Regardless fo whether or not he has surgery or other treatments, need to start thinking about pain management and terminal care, bioth of which can be challenging in Thailand.

Sheryl, you sound a wonderful, warm and well knowledged lady, I would be so interested to hear of your background. Huge Kudos for all the assistance you are giving

[alyx]

Thanks for all the answers

As a matter of fact, it is the kind of direction I wanted to be pointed to.

Until the cancer was "re staged", on Saturday, the robotic surgery was the only, if not the best, solution.

I am fully aware that it is time to let him go ( he is 43 and next month will be our 20th anniversary with plenty of memories and a life filled with love, joy and mutual understanding, but can't get enough of it, can we). It has actually been a constant thought since his first stroke.

Weird feeling to hope for more quality time and, at the same time, wish for a sudden end to this for both of our sake.

The problem is, as you have stated, pain management: I would really like to avoid hospitalisation ( although, if it comes to it, the Bangkok Hospital in Bangkok would be the choice for financial reasons )

As I have read other threads regarding this kind of situation where most of you have answered, I understand that morphine or other drugs cannot be taken through IV at home ( although it is available orally, that I know from experience ) and I will try and find the best way to deal with it as we stay at Silom.

We are also supposed to visit the hospital for third chemo next Tuesday and I am contemplating stopping the treatment as it makes him go through three or four days of unbearable nausea and vomiting before which I remain helpless. From what the Singaporean surgeon has said, it is worthless.

My only concern, right now, is to fly him back to Bangkok tomorrow as he didn't feel very well this morning (and yes, no travel instance would take him with preexisting conditions, trust me I have looked everywhere for a month)

[Sheryl]

I would definitely stop the chemo.

And specifically ask about the enti-emetic drug Ondansetron. It is specific to the nausea from chemo and works very well but they always prefer to give cheaper drugs at least initially. It will make him feel much better if he is nauseous or queasy. It is available in Singapore but prescription only. In Thailand it is OTC.

Yes, you can get oral morphine in Thailand. Also (though sometimes hard to find) fentayl patches which can be very helpful when it gets to the point that he can't swallow. Finding a doctor who is willing to prescribe adequate amounts can be a problem but with trial and error can be resolved.

Finding a doctor supportive and understanding of a desire to die at home and the need that creates for parenteral analgesia towards the end, much harder. I am actually not certain that it would not be possible to get IV morphine at home if one had RNs from the hospital in question in attendance, but it is certainly not a familiar idea to Thai doctors and hospitals. And once hospital nurses are in attendance there can be problems controlling the situation in terms of not giving unnecessary things that prolong the death, so really need to discuss thoroughly with the doctor and need a doc who fully understands and is on board.

Probably the leading Thai doctor on palliative care/pain management is Dr. Pongparadee Chaudakshetrin, she's at Siriraj where she heads their pain clinic, but also has private hours at Samitivej Sukhumvit http://www.samitivejhospitals.com/RSSR/Reader.aspx?type=dr&id=11931619-2-1 She trained in US, UK, Australia and New Zealand so will be familiar with the Western system of hoem hospice care. Hoiw much she can replicate that here I do not know but probably well worth having a consult with her. She is an active member of the Thai Association for the Study of Pain and has published on the subject in international journals.

Another possible option which in your particular case may make sense is to have a gastrostomy tube places ( a small tube going straight into his stomach - unlike feeding tubes through the nose, not uncomfortable and placement is a simple procedure, outpatient usually). As the tumor expands he is going to have increasing trouble swallowing so doctors may suggest such a tube anyhow in order to give food and fluids. At final stages you may want not to give that but for as long as he is awake and able to have some quality of life it is worth it. And, once the tube is there, you'll be able to give him morphine even when he is semi-conscious (will have to crush the tabs first/dissolve in water). So that problem solved. Be forerwarned that morphine and other opiates can be extremely constipating so watch out for that and take measures early on if it happens, not unusual for terminally ill patients to develop severe fecal impactions due to the meds.

In the meantime get as good a supply of pain meds from the hospital in Singapore as you can to bring home with you and specifically ask about a fentanyl patch in case he cannot swallow tablets. It is available in Singapore. As long as prescribed can bring a 30 day supply of narcotic with you into Thailand, but in addition to labelled precritpion bottles should have a doctor's letter or medical certificate on hand.(you'll want that in any case).

In terms of cost, there is a Pain Clinic at Chulalonghorn hospital which will not be expensive (in fact could be free for hi m as a Thai if can get a referral letter from whatever hospital he is registered for under the Thai health system). But like all govt hospitals lots of inconvenience, long waits etc. And private care just for pain management should not be that expensive..

[alyx]

Just got your post

Too late to get the prescription in Singapore, I am afraid

I'll try in Bangkok

I am going to read quite carefully your suggestions and come back to it

Thanks

[alyx]

We left Singapore to arrive safely in Bangkok on Tuesday at 3 PM where an immigration officer started making problems about the Thai ID number in my spouse's passport as it did not correspond to his city of birth...????? I made a fuss (considering his condition) and had a hard time explaining to the officer that the ID card was issued by our Mairie of residence which is in Bangkok. He asked for ID , driving licence , which my spouse didn't have....passport isn't enough.....first time in 20 years we have been travelling together that such a thing happens. Eventually the officer let it go...quite angry at me....

Well, nothing to do with the cancer but I thought it was worth mentioning it.

Unfortunately, two hours later my spouse had a stroke while walking near by and he is now at the hospital ( that was quite an episode and I will open a thread to thank the police and some people who helped us to get him there )

I think that will give me the opportunity to organise something about the months to come along your lines of advice

[Sheryl]

Unbeleivable how one thing after another keeps striking you two!. I am so sorry to hear this. Let me know if i can help in any way.

Which hospital is he in?

How severe is the stroke?

[alyx]

I agree.....

He had a stroke followed by a kind of epileptic crisis

In time though to get the proper injection. He slightly recovered his motor functions. This mornings he had another stoke in ICU ( fortunately I did notice it, at first the nurse was doubting....) Now he has recovered about 50% but should be ok

He is at the Bkk hospital which I consider quite reactive to these conditions

[Sheryl]

Yes, their neuro unit is excellent.

Ar these actual infarcts or TIAs? If the former, I wonder if tumor emboli....

[thepool]

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Yes, their neuro unit is excellent.

Ar these actual infarcts or TIAs? If the former, I wonder if tumor emboli....

+1

[alyx]

They definitely are vascular strokes.

I have asked for the gastronomy tubes but I guess that I will have to remind them

The pain he has, which can be extreme, comes from ulcers he has developed in the throat.

The Singaporean surgeon prescribed Nystanin oral solution as he assured me they were of fungal origin ( he actually found unnecessary to have them analysed when he made the biopsy ) but my spouse tried three times in Singapore and it triggered awful pain and burn. I thought it was better to wait to try again, which he did again and the effects were the same so....he sticks to lidocaine but very little relief.

[alyx]

By the way he has fully recovered but the fact he knows about the stage of the cancer doesn't help at all as he is clearly not ready to let it go. II guess I have made a mistake by telling him the definite truth.

[alyx]

I have made an appointment for today with dr Boonchu at the Burumgrad hospital to present him with the reports of both hospitals, to confirm that there is no exit, hoping that they will not refuse to see me as my spouse won't attend, obviously.

In any case, we will not go for surgery.

I have also read the article about the therapy but it seems to be more targeted at stage 1 and 2

I know, I know I should stop looking but it is difficult to give up, and I can't stand seeing my spouse as he is.

It might also help me find the right strategy to alleviate the pain

[Sheryl]

You did not make a mistake in telling him the truth about his condition, he needs to know in order to make decisions. But it will take soem time for it to sink in and for him to accept, that process goes a little differently in everyone and is a gradual thing. You will also find that it is not a straight linear process. Patients will reach a point where they accept the truth and at times talk realistically about it and then still have periods where they revert to denial or clutching at unrealistic hopes, that is natural. Just respond according to wherever he is at, at the moment. Don't feed denial but don't try to confront it either.

While phototherapy is only curative in early stages (as with anything else) it has apparently been used to get some palliative effect in later stages so still worth asking Dr. Boonchu about especially if he has candida in his throat as if nothing else it may help that. BTW there are systemnic drugs that can be given for candida (thrush) that he should be on, ask his doctors at Bkk Hosp about it. Oral fluconazole or sometghing like that.

There is a pain specialist at Bkk Hospital whom I have gotten good feedback on, ask for a consult with her as well as long as he is in there, she may be able to improve his pain management. http://www.bangkokhospital.com/index.php?p=doctor_profile&DrID=960

You will have to adviocate a bot for this and folllow up on it as inter-departmental referrals and coordination tend not to be a strrong point in Thai hospitals. They'll handle his neuro needs OK but may need reminding that he is also a cancer patient and needs to be seen by other services as well.

[alyx]

Thanks for the insight

I have asked my Neuro to get in touch with Laksanee ( they are a bit peculiar about the chain of command so I preferred that rather than approaching her directly )

The guy who has prescribed chemo is aware that my spouse has been admitted and he is not available...so that will make it easier for me to tell to to stop )

[alyx]

Just back from the apointment with Dr Boonchu who dismissed any possible course using phototherapy. He also agreed that the radical surgery was kind of heavy....

Quite a nice man who only checked the prints I had brought ( guess it was enough ) and refused to charge for the consultation

He referred me to a radiologist ( Mrs Sumantha ) I will meet on Tuesday but I guess I will have the same kind of program

Meanwhile Laksanee is to come tomorrow morning

I'll keep you posted

[Sheryl]

Thanks for the update. At least you have explored the phototherapy, even though the answer is negative, now you can both know that you did try. And you have further back-up against surgery.

Radation of course is not curative but might - might - shrink the tumor enough to give some temporary relief or reduction in his discomfort, though ultimately it will come back. And it is not without its adverse effects which can sometimes be as painful as what it was meant to counteract so do ask about that (e.g. tissue damage in the throat).

Good luck with Dr. Laksanee, I hope she can arrange a better regimen for him. When she comes, try to engage her not only on his current management but on what can be done after he goes home, both initially and in late stages, if it his the plan to let him die at home. That's the point where it gets really challenging. Due to the location of his cancer, the stage of being unable to swallow medications will come sooner than usual as well so need to discuss that as well and see what the options could be e.g. can she prescribe fentanyl patches? Or is a gastrostomy tube the only way? (AFAIK there is no longer rectal suppository forms of morphine available in Thailand, unfortunately).