I have cancer - a personal perspective

[fang37]

Those who have cancer invariably think that it is a death sentence. There has been a lot of research - mainly breast & testicular cancer.

I am relating my story as a sufferer. Why? Quality information enables the sufferer to make quality decisions.

MY EXPERIENCE

I began smoking @ about age 13; alcohol @ age 18. By age 20, my drinking was out of hand.

At age 35, I ceased smoking & drinking permanently.

Then, at age 60ish, I was diagnosed with stage 3/4 throat cancer - base of tongue. BTW, stage 3+ stage is serious. Mortality rates are high. From memory, stage 4, life expectancy is about 6 years.

Quality information/advice was conflicting. Eventually, I handed my future over to the oncologists.

Initially, I was given chemotherapy - 1 session only.

Then a course of radiotherapy commenced. I didn't even know what radiotherapy was.

Pre-therapy information was not provided in my case ie a dental checkup. This is not a slur against the medical practitioners. The hospital was full of patients.

I received approximately 35 sessions of radiotherapy. BTW, radiotherapy is not a painful experience.

Now, I do not have any recollection of the pain but I received copious amounts of morphine so it is reasonable to assume that it was a painful experience physically. Morphine was administered via liquid, patches & ?.

Side-effects of morphine - hallucinations. I also lost interest in life as I lack physical endurance.

Life carried on until I discovered that a number of my teeth were falling out. Why? Obviously, I think that this was a result of the radiotherapy. Finally, it was suggested that ALL teeth be extracted - all 27 of them.

I was advised that if I did not undergo the teeth extraction, my jaw would collapse.

Prior to that, it was mandatory that I undergo hyperbaric chamber oxygen therapy. Again, this procedure was not painful. Sessions were daily - about 1.5hrs.

Teeth extraction was effected in two sessions - not a pleasant experience. I did ask that I be anesthetized but this was refused. The dental surgeon advised that dentures was not an option.

RESULT

I am in remission. My response - so what.

Quality not quantity of life matters.

Now, I do not eat any solid food. There is slight pain in my gums. My food intake is soy milk, water & iced coffee (my luxury).

I am fortunate! My wife is a good listener - not an adviser!

Total cost (including 2 trips to BKK & one trip to Australia) - a mere B3.5m.

WOULD I DO IT ALL AGAIN? NO WAY!

My opinion in such cases - let nature take its course & take any useful pain relief you can access. I emphasise "any" as I considered marijuana. I sought advice from a pain management doctor. He advised that he was not educated on this topic & anyway, its usage (even for medical purposes) is prohibited in Thailand.

So this is my story. A useful aid was the implementation of AA philosophy eg one day at a time; don't try to change the things that you cannot change etc.

In my case, I found the advice by the do-gooders was negative. They may have had good intentions. Too many advisers can be a liability. My pain is my pain - only I can feel it.

Edited August 16, 2015 by Crossy
Comment on moderation removed

[simple1]

OP: Do you currently receive adequate pain control medication? Reason for the question it has been mentioned in other threads that Thai medical staff do not follow best practice in this area & are reluctant to administer opiates.

Upon my return to Oz last year I underwent a full medical test (Medicare funded) and was eventually diagnosed with aggressive Prostrate Cancer - approx 3,500 deaths a year in Oz - Gleason scale 9. In Oz one is provided with literature to assist your own decision as there are grey areas in medical knowledge with life expectancy / quality of life. The scans did not identify any spread outside on the prostrate and was offered the option of radiation or surgery, surgery was recommended by the urologist; I took his advise as he stated other clients had deeply regretted not undergoing surgery. During surgery they located spread to some lymph nodes so three were removed. After surgery had some major complication, nearly now resolved together with high PSA count, so receiving regular hormonal injections.

When remission has been ongoing for two years I plan to return to Thailand with my wife. However, my major concern will be to confirm availability of suitable pain medication treatment should cancer come to the fore as I have decided not to undergo further surgery. I do have a Living Will in Thailand and a similar facility in Oz (Advanced Health Care Directive).

100% agree, don't follow the advice of 'do-gooders'.

[fang37]

We agree - only sufferers have ALL the info & pain.

Pain relief - it was 6 years ago. At RAM hospital, there is a "pain management specialist." Other hospitals too.

Morphine was their medication of choice?.Others? Of course, "MJ" should be available in certain cases.

Is morphine a goer? Now, I understand that it is manufactured in an artificial form. My understanding is that this form is superior - greater quality/consistency control.

In Oz (my native country), you might make enquiries re pain management.

Hypnotherapy is worth a look too. Why not combine all?

In LOS, facilities & expertise are quite good (in my opinion). One of my oncologists received her training at Mayo Clinc (USA).

But, no medicare for you in LOS!

Good luck - if you need it.

[nowretired]

It is extremely unlikely that narcotic medication would be available on an out patient basis. Even as an in patient Thailand lags behind the West in terms of providing adequate analgesia and end of life care.

Of course, there may, in some places be more enlightened Physicians but finding one in a time of need might be a challenge.

Where in Thailand would you be living?

[konying]

OP i am sorry to hear about sufferings. I have had the pleasure of pain looking after my mother in stage 3 on 24 hour basis.

I could not comment on what i think one should do from your side of things, from my side i was willing to do anything and everything possible to help her.

The sad reality was, chemo which is suppose to help, was actually killing her and completely took away any quality of life she had left.

To make matters worse, it did not work in the end .

Her neighbor, refused any chemo treatment, and while predictions were bleak, neighbor outlived my mother and still going.

From what i learned, make sure to run regular tumor marker tests and my best wishes.

PS, Australia would be a better place to deal with this, in terms of help available.the palliative care, home visits and social support. I believe private hospitals like Bangkok Hospital, also have all the measures in place, but it comes at a steep price. Public hospitals its tylenol and back home

Edited August 16, 2015 by konying

[fang37]

I now live in Fang - 150km from CNX - Nthn Thailand.

Cancer occurred in CNX.

I considered that the medicos did a competent job.

I doubt that a lot can be done re treatment although recent research reveals that radiotherapy can be better focussed=less damage. ie pin-pointed.

I reiterate my thoughts re relatives etc - be a quality listener. No false hopes.

[simple1]

It is extremely unlikely that narcotic medication would be available on an out patient basis. Even as an in patient Thailand lags behind the West in terms of providing adequate analgesia and end of life care.

Of course, there may, in some places be more enlightened Physicians but finding one in a time of need might be a challenge.

Where in Thailand would you be living?

If you're referring to me, we have a house in Pattaya

[AyG]

Thanks for posting, OP.

This brings back very painful memories of someone I used to help a few years ago. He too had mouth cancer and had all his teeth removed. He also became unable to speak at more than a rasp. He changed his name because he could no longer pronounce "David". In a sense he was in a more difficult situation than you. He split with his partner after the partner gave him Hepatitis B. (The partner had been having bareback sex with strangers behind his back. The partner was also an unreliable alcoholic.) He was also of low intelligence and really couldn't understand his predicament. For example, he struggled to understand that Hepatitis B was incurable.

Obviously, he couldn't work, and lived on benefits in a tiny council flat. Carried on smoking his hand-rolled cigarettes until the day he died. He was 45, but looked as if he were 85 - wizen, frail, pathetic. Death was for him perhaps a kind release.

I hope, OP, that you stay in remission. Good luck.

[fang37]

Many many times I thought that death was preferrable. I contacted Dr Nitzke (Oz) & an organisation in Switzerland ie I was absolutely a serious player. However, even these persons/organisations have severe restrictions.

Moreover, how was I going to travel to these countries alone. My Thai wife deplored my interest in euthenasia.

When one thinks of death as a superior option, pain is usually unbearable.

Obvious solution - legalise marijuana.

[al007]

God bless may you not suffer too much

I am 70 yrs old and overweight currently living in KhonKaen

I am here on this forum because yesterday my PSA was 13.0 and it is suggesting prostrate cancer, I need to lease with people who have been through this and be advised where to go for checking and treatment, I am at present on antibiotics to clear any infections and will then in two weeks be retested for psa readings

Ultra sound yesterday was unable to view prostrate well

I have no medical insurance but can pay reasonable medical bills

I could return to the Uk but really have no where to stay, and have much love and care here

Edited August 16, 2015 by al007

[fang37]

In that case, your options are limited.

CNX has all the expertise & resources.

"Seepak" (???) is the private hospital section of the government hospital section of Suandok (Gov't hospital). They are @ the one location.

Fear will not assist.

Get on your "bike" & get there quickly. A referral from the doctor @ Khon Kaen would speed things up I imagine. Your medical records may be forwarded in advance to CNX + a telephone call by your consulting doctor.

Better still, Chiang Rai may have the facilities to assist.

[Sheryl]

That is Sripat in CM

But Khon Kaen University Hospital is of equal excellence

[fang37]

No matter where you go for treatment, I suggest that you have a workable plan for post-radiotherapy in place.

An adequate support system is essential too. I required oxygen support 24/7 ie adjacent my bed plus for any travel. I disclosed this matter to Thai Airways & they requested that I have an assistant & oxygen support at all times.

In addition I had a wheelchair.

[simple1]

God bless may you not suffer too much

I am 70 yrs old and overweight currently living in KhonKaen

I am here on this forum because yesterday my PSA was 13.0 and it is suggesting prostrate cancer, I need to lease with people who have been through this and be advised where to go for checking and treatment, I am at present on antibiotics to clear any infections and will then in two weeks be retested for psa readings

Ultra sound yesterday was unable to view prostrate well

I have no medical insurance but can pay reasonable medical bills

I could return to the Uk but really have no where to stay, and have much love and care here

I was diagnosed and commenced treatment for prostate cancer last year. PSA count was lowish at 10, then had rectal ultrasound to locate prostate and guide for biopsy. Gleason scale was high at 9, so was triage for surgery within 30 days. Prior to surgery had CT and bone scan and spread not detected. However, during surgery spread was identified, so if diagnosed with prostate cancer would recommend MRI, with bone scan, that has a higher likelihood of detecting if cancer has spread from the prostate. Alternatively, if you can afford it and available in Thailand you may like to consider a PET scan (Positron Emission Tomography)

You will get some conflicting advice, but latest research indicates surgery if not spread & radiation treatment if spread. NOTE there are some significant quality of life concerns with surgical removal so if you do have prostate cancer, do your due diligence.

PM me if you have any questions, but cannot provide guidance for best Thai location/s for treatment.

[Lefty]

God bless may you not suffer too much

I am 70 yrs old and overweight currently living in KhonKaen

I am here on this forum because yesterday my PSA was 13.0 and it is suggesting prostrate cancer, I need to lease with people who have been through this and be advised where to go for checking and treatment, I am at present on antibiotics to clear any infections and will then in two weeks be retested for psa readings

Ultra sound yesterday was unable to view prostrate well

I have no medical insurance but can pay reasonable medical bills

I could return to the Uk but really have no where to stay, and have much love and care here

I also was 70 and over weight when I found out I had prostrate cancer.My options were surgery or radiation. I chose radiation,consisted of 36 days of radiation therapy.No pain at all,no side effects. Ido PSA tests every 6 months with very low PSA 0.004-0.007. Cancer in remission.

I was treated at MD Anderson hospital in HOUSTON. all cost was covered by Medicare/insurance.All in cost was about $100,000.

Good luck to you

Lefty.

[Tolley]

Thanks for posting, OP.

This brings back very painful memories of someone I used to help a few years ago. He too had mouth cancer and had all his teeth removed. He also became unable to speak at more than a rasp. He changed his name because he could no longer pronounce "David". In a sense he was in a more difficult situation than you. He split with his partner after the partner gave him Hepatitis B. (The partner had been having bareback sex with strangers behind his back. The partner was also an unreliable alcoholic.) He was also of low intelligence and really couldn't understand his predicament. For example, he struggled to understand that Hepatitis B was incurable.

Obviously, he couldn't work, and lived on benefits in a tiny council flat. Carried on smoking his hand-rolled cigarettes until the day he died. He was 45, but looked as if he were 85 - wizen, frail, pathetic. Death was for him perhaps a kind release.

I hope, OP, that you stay in remission. Good luck.

Most people with Hep B manage to overcome the virus and have no symptoms or on going problems. So not sure where you get the scaremongering about no cure for Hep B.

The body overcomes the infection and you go on to live a normal life.

I had it forty years ago and it comes up in blood tests as hep b resolved.

[gamini]

God bless may you not suffer too much

I am 70 yrs old and overweight currently living in KhonKaen

I am here on this forum because yesterday my PSA was 13.0 and it is suggesting prostrate cancer, I need to lease with people who have been through this and be advised where to go for checking and treatment, I am at present on antibiotics to clear any infections and will then in two weeks be retested for psa readings

Ultra sound yesterday was unable to view prostrate well

I have no medical insurance but can pay reasonable medical bills

I could return to the Uk but really have no where to stay, and have much love and care here

I was diagnosed and commenced treatment for prostate cancer last year. PSA count was lowish at 10, then had rectal ultrasound to locate prostate and guide for biopsy. Gleason scale was high at 9, so was triage for surgery within 30 days. Prior to surgery had CT and bone scan and spread not detected. However, during surgery spread was identified, so if diagnosed with prostate cancer would recommend MRI, with bone scan, that has a higher likelihood of detecting if cancer has spread from the prostate. Alternatively, if you can afford it and available in Thailand you may like to consider a PET scan (Positron Emission Tomography)

You will get some conflicting advice, but latest research indicates surgery if not spread & radiation treatment if spread. NOTE there are some significant quality of life concerns with surgical removal so if you do have prostate cancer, do your due diligence.

PM me if you have any questions, but cannot provide guidance for best Thai location/s for treatment.

I have prostate cancer. I underwent radiotherapy in Bangkok and I had no side effects whatsoever and I was 81 years at the time. I have had excellent US trained specialist looking after me and advising me and unless you are very young radiation is probably better at your age. They gave me one three-month dose of hormone chemotherapy and it nearly killed me. So I didn't take any more. I'm now 85 and doing pretty well my PSA is 14 my doc says not to worry that I would have at least 5 to 7 years before any symptoms but just to be on the safe side I am taking 50 mg of bicalutamide which is an antiandrogen with negligible side-effects. I think the best advice I got is that it's probably better to have a good quality Life and a longer one suffering from the terrible effects of chemotherapy or the very bad effects of hormone therapy like I had. Chemotherapy killed my brother in the end. It prolonged his life by six months but he suffered terrible side-effects for the last year of his life.

I think that hospital care in Thailand is far superior to Australia and far cheaper. There are plenty of nice hospitals where you could spend the rest of your days having palliative care with wonderful service.

When I was in hospital in Australia all the nurses went off at 6 o'clock to the pub and there was no one really to look after us except one grumpy old nurse.

[DogNo1]

When I was hospitalized at McCormick in Chiang Mai after a motorcycle accident in 1983, they gave me morphine whenever I asked for it so long as the shots were not too close to each other in time. Good luck to the cancer sufferers. I was cured of throat cancer by surgery and radiation at Tokyo University Hospital about eight years ago. The doctors there did a great job. I still have my voice and all of my teeth. So far I'm still cancer-free.

[fang37]

One thing about morphine - it gives you constipation. So take a laxative. The problem is getting the correct balance/dosage.

[Aussieroaming]

Fang37... Enjoy your last days.

[SantiSuk]

I'm pretty sure Bumrungrad in Bangkok has a PET scanner - i think I recall seeing nuclear medicine signs there. Sheryl might be able to comment on elsewhere - the big regional cancer hospitals should really have them; says a lot about diagnosis (and lack pof trickle-down wealth) here if they do not.

Not cheap. I think my insurer was billed around GBP1,000 - 1,200 by a UK private hospital, which suggests a likely cost of 20,000 to 35,000 baht in Thailand. Much better analytic tool than CT's MRI's where potential cancer spread is an issue. Can save money if investigative surgery or surgery with a prospect of spread being discovered is the standard next step response.

{Not a medic - but I've had two PETs and multiple other type of scans (for lung issues) and I read widely around the subject when I was treated}

[Aussieroaming]

Sorry that might sound callous but it wasn't meant to be. Here is hoping you might recover fang37...for me I have reconciled that life is limited and I don't have a life extension wish, I will be happy to move on.

[fang37]

Aussieroaming

Your post had zero effect. We Aussies are thick skinned.

I was told 6 years max - I have arrived but still breathing.

Anyway, fellow Aussies are united.

See ya, Digger

[xylophone]

There used to be often severe complications after removal of the prostate using conventional methods/surgery, however now some specialised hospitals in many countries have the robotic "Da Vinci" machine, which overcomes most of those problems.

Having had many visits to my specialist regarding an enlarged prostate, I did explore the pros and cons of what would happen if removal was necessary and one of the surprising outcomes was the fact that a quite high percentage of prostate cancers are considered very slow-growing and it is more likely that you will die with them, than because of them, which surprised me.

I know this is of no help to Fang37, and my I wish him all the very best with his endeavours and I sincerely hope that he can achieve a quality of life that makes it worth living for (if that makes sense).

All the very best to you and your post is informative, helpful and courageous.

[xen]

Interesting read Fang 37 , and my best wishes go out to you . I have been diagonalised as having Smouldering Myeloma and can expect to experience a lot of what you have written about . It comes at a time that my new family has joined me and so i expect to spend only a few years with them , especially after the smouldering Myeloma turns into multiple Myeloma. Because it is essentially cancer of the blood it requires high dosage of chemotherapy if that is the treatment chosen just to prolong life rather than cure it . There is also stem cell , bone marrow transfers, thalidomide and /or frequent blood exchanges - but i guess even in Australia it depends on the cost as to what treatment is available. Eventually it will come down to a decision about is it worth spending more money on this case or just let him fade into the dust.

There is so much to learn and the specialists tend to keep a lot to themselves - i guess not to alarm me but there is a lot of information on the net and it does not sound pretty.

Oh well, such is life.

[Sheryl]

.....There is so much to learn and the specialists tend to keep a lot to themselves - i guess not to alarm me but there is a lot of information on the net and it does not sound pretty.....

How much detail to give a patient (especially as regards things that might not even occur) is always a challenge for the professionals caring for people with cancer and other potentially fatal diseases.

One reason it is so, is that people differ enormously in how much they want to know and also how they respond to information. The same person will also differ in that regard at different stages in their illness depending on whether they have gotten over the initial shock, come to terms with the prognosis, etc. And lastly people differ a lot in their degree of education and understanding of medical maters and this affects how well they can understand nuanced information about things that are not cut and dried.

I mention this because it is important for you to give your doctor clear signals about your information needs. If there is something you want to know, or something you have read that is worrying you, ask. Phrase your questions in a clear way that can be answered, remembering that nothing is 100% certain.

For example: "Can you give me an estimate of what percent change there is that I will (be cured/live at least X more years/still be able to have an erection/etc)?".

Or: "I have read on the internet that some people experience XXXX with this disease/this treatment. I know there are no certainties but can you estimate about what percent risk there is in my particular case of this happening?"

Questions like that convey to the doctor that (1) you need and want detailed information and (2) you understand there are no 100% guarantees and (3) you are able to understand information about probabilities rather than certainties.

Of course in some cases you might prefer not to know something at this time, and that's fine. But when/if you do, that's the kind of way to ask.

[xen]

.....There is so much to learn and the specialists tend to keep a lot to themselves - i guess not to alarm me but there is a lot of information on the net and it does not sound pretty.....

How much detail to give a patient (especially as regards things that might not even occur) is always a challenge for the professionals caring for people with cancer and other potentially fatal diseases.

One reason it is so, is that people differ enormously in how much they want to know and also how they respond to information. The same person will also differ in that regard at different stages in their illness depending on whether they have gotten over the initial shock, come to terms with the prognosis, etc. And lastly people differ a lot in their degree of education and understanding of medical maters and this affects how well they can understand nuanced information about things that are not cut and dried.

I mention this because it is important for you to give your doctor clear signals about your information needs. If there is something you want to know, or something you have read that is worrying you, ask. Phrase your questions in a clear way that can be answered, remembering that nothing is 100% certain.

For example: "Can you give me an estimate of what percent change there is that I will (be cured/live at least X more years/still be able to have an erection/etc)?".

Or: "I have read on the internet that some people experience XXXX with this disease/this treatment. I know there are no certainties but can you estimate about what percent risk there is in my particular case of this happening?"

Questions like that convey to the doctor that (1) you need and want detailed information and (2) you understand there are no 100% guarantees and (3) you are able to understand information about probabilities rather than certainties.

Of course in some cases you might prefer not to know something at this time, and that's fine. But when/if you do, that's the kind of way to ask.

Thanks Sheryl on your good advice .It must be hard to know how much to tell a patient , me, i would rather have it straight . But even on the net with this cancer there seems to be a lot of information that is particularly contradictory, perhaps because it is not a common form of cancer. I have asked my specialist many questions but i am like an inquisitive kid but he is very good, excellent in fact.

The other issue is at my stage it is all rather academic what the effects will be ( I am just beginning to feel the aches aches and pains in my bones and the intense fatigue and the easily caught infections. I am still working full time and that is a struggle .And then there is the question of how my new family will cope plus issues surrounding anger and despair as the Myeloma progresses.

[Sheryl]

Beware the internet as misinformation abounds on it. Be sure to stick to legitimate professional sources. And be sure what you read is specific to the type of melanoma you have as there are many types.

[simple1]

<snip>

then there is the question of how my new family will cope plus issues surrounding anger and despair as the Myeloma progresses.

I assume you are aware that in Oz there are organisations that can provide professional mental health care for the families of cancer patients.

[Tolley]

Interesting read Fang 37 , and my best wishes go out to you . I have been diagonalised as having Smouldering Myeloma and can expect to experience a lot of what you have written about . It comes at a time that my new family has joined me and so i expect to spend only a few years with them , especially after the smouldering Myeloma turns into multiple Myeloma. Because it is essentially cancer of the blood it requires high dosage of chemotherapy if that is the treatment chosen just to prolong life rather than cure it . There is also stem cell , bone marrow transfers, thalidomide and /or frequent blood exchanges - but i guess even in Australia it depends on the cost as to what treatment is available. Eventually it will come down to a decision about is it worth spending more money on this case or just let him fade into the dust.

There is so much to learn and the specialists tend to keep a lot to themselves - i guess not to alarm me but there is a lot of information on the net and it does not sound pretty.

Oh well, such is life.

My neighbour in Oz has multiple myeloma and he is still alive and kicking 8 years from initial diagnosis. He is on a new clinical trial at the moment that has good results so you need to check out what is available as there are lots of new treatments that are extending life.