Hello everybody,
My name is Magda and I joined this support group because of my dad. So, here is my story...
About 3 months ago he was diagnosed with cancer of the tongue. Since he lives in Romania it took almost 2 months until he got a positive diagnosis, being sent from one doctor to another and from one hospital to another. It started about 5 months ago as a very small blister on the tongue which didn't heal. Countless dentists and ear, nose and throat specialists later, one of them had the idea of performing a biopsy. Because I live in the US I tried contacted every single organization in hopes of getting some help for him since in Romania he was being refused care (the reason being that cancer has a low rate of survival so why waste medicine, money and everything else). During the time that we've been trying to get him help, the cancer which had a very accelerated growth rate had spread to the area under his tongue as well. The hospital refused to operate on him saying that they lack the expertise and everything else for this type of intervention. So, he was sent home... 4 times, by 4 different hospitals. If he would've gotten the surgery as soon as the cancer was found, may be things would've been different now...
I had to abandon my job in the US and come with my 1 year old baby to Romania in hopes of getting help for him. Romania is a very corrupt country... We were finally able to get him to start outpatient Radiation therapy for which he has to travel by train or bus about 150 miles every day. He hasn't been able to eat but the hospital refused once again to admit him, saying that they are unable to feed him through a Gastric tube. They've also told him to take Tylenol for the pain, which was just ridiculous. He's had so far 25 Radiation sessions of the head area. Today, a CT scan was performed so now radiation of the neck was recommended. Unfortunately, at the hospital they refused to tell us much of anything, just said that the head area looks "as expected", but no matter how much we tried, nobody wanted to tell us anything more.
I've read some of your stories, I was wondering if may be you know what are the chances of surviving mouth cancer with only Radiation? It was made clear to us that there will be no operation or further treatment due to lack of... everything. I had to use all my savings in order to bribe (yeah, this is the system in Romania) the right people to at least get him this treatment.
At this point, I don't even know what to do anymore... I know I won't be able to get anything more for him, the last of my savings will hopefully be enough to bribe somebody to get him a little Chemotherapy... but only may be and if...
What do you guys think his chances are? What does it mean that they are starting neck radiation? Does it mean that it spread to the lymph notes or is it just normal to be done this way?
Any input would be greatly appreciated, I just don't know what to do and where to turn anymore. Unfortunately, I have to go back to the US in about a week and I am not sure what and how much I'll be able to do in the meantime. I want to do everything in my power to get him treated.
Unfortunately, I couldn't get any hospital in the US to treat him or operate on him without charging amounts of money that I will never be able to get together. So my hopes now lay in what can be done here, but I need to know what exactly is done in those type of cases and then try to get it for him.
Thank you, any advice or opinion will be greatly appreciated.

hello magda
nice to meet you,your poor dad has certainly been through the mill hasn't he,and you as well.i had tongue cancer but i had chemo combined with radiotheraphy which has halted my cancer,hopefully someone with more knowledge will see your post and be able to give you more information i am still a novice at all this,i just saw your post and thought i would answer and let you know that i am thinking of you both. love from shirl xxx

Dear Magda,
Without beating around the bush, I know how tough it must be for you watching your dad getting the kind of treatment he is getting in Romania.India too is well known for its corruption but then with its booming economy there is a lot of money moving around. Is'nt there anyway, you could get him to the US and follow up his treatment there? This is just a thought off the cuff as I am really not aware of the medical situation or the medical fraternity in Romaina. From what you describe it feels as though the doctors and the facilities are from the dark ages.

I truly hope someone here is able to help you out with the problem which is certainly not a small one and keeping in view the corruption involved and the dwindling finances. If there is anything we can do - you can always count on us - however I do not think the Roamanian doctors are too keen on keeping up with the new world as it suits them. However, do try and think of ways to get him across to the US - it will be or may be a life saver for him.

I would love to keep in touch with you and understand more and maybe there is someway we could all use our brains and figure out something. Meanwhil - are you a green card holder or a citizen of the US? If so - it will make a world of difference even if you feel you are not covered for such high costs of treatment. There are a lot of NGOs etc that are most forthcoming and am sure things will work out. Try and write a "plea' letter to the minister who looks after the medical affairs . I really am not sure as to how the US rules really work - but have learnt one thing in life - just bypass all the others and go right to the top - even to the US president if required and trust me you will get a reply. I know a lot of people will have a laugh on this account but it has worked for me on ocassions when I had to deal for some help from various governments and wrote directly to the top and ever prime minister or President gave me a reply.

I do not know how far it will work - but can you rewrite the whole story and make it seem that the treatment is going to be the end of you Dad and send it across to me? I promise I can get it published in the newspapers in India and usually (though the corruption exists), the Indians are very generous and may just accept on taking him on as a humanartian case without any charges. Its has been happening and will continue so in the future and trust me Indian doctors are really some of the best in the world. There is no harm in trying and knocking at all doors even if the results are tough to come by.However, my promise of putting out your dads story and your struggle in both print and televison is very true and I would love to do it.
Take care of yourself and hope your son is okay and your dad not too bad.

With warmest of regards,
Ananth

PS : nce again a lot of people will think of this as rubbish and have a laugh but I have seen from experience it is not so.

Thank you so much for your replies... I have sent an email to every single institution that I could think of in the European Union of which Romania is a member, but although I got some emails back, everybody that replied said that they could offer no help. Romania has Universal health care, but unfortunately, because of the corruption, getting the treatments is a lot harder than anywhere else. I tried to bring my dad to the US, I am a Permanent Resident and my dad has a 10 year visitor visa, the problem was that every hospital I contacted said that I should find a charity or something, somebody who can pay for the treatment.
There is a charity called United Way in the US to whom I've donated money for the past 8 years, so I tried contacting them. They said they are only helping US citizens. I couldn't understand how and why they took the money I donated to them although I was not a citizen, but then refused to help me.
I will try your suggestion, Ananth, it seems like a good idea.
I have already contacted the Romanian Red Cross, the Health Care department, but to no avail. I have nothing to loose if I contact the US authorities, so I am going to try this too.
also, I tried getting help from Phillip Morris, the tobacco manufacturer since my dad got cancer after many years of smoking their cigarettes that had no warnings on the packages, but they didn't answer me either.
I had a neighbor here in Romania who died a few years back because of cervical cancer. She was sent home because she was terminal and was not given any pain medication, because according to the doctors, she had no chance so why waste good morphine on somebody who is already dying... She dies in horrible pain and I just can't sit around without doing anything for my dad.
I sent out this email that I am copying below when all this started happening, it will clarify a lot... So here it goes

Dear Sir/Ms.

My name is Magda O., I am a Romanian citizen currently living in the United States. I am emailing you in the hope that you might be able to help me. I have exhausted all my options for help at this point, so the European Union (of which Romania is a member) and the International Health Organizations are at this point my last resort.

I am probably sending this email to the wrong person/authority, however I have the hope that you would be kind enough to forward this to somebody who could possibly offer me assistance.

I am emailing you in regards to a health related issue which ties in with how the health care system is in Romania.

The Human Rights are disregarded in Romania,the access to medical care is a privilege of the rich (like so many are) and can afford to pay huge amounts of money to private hospitals abroad or in the country or pay exorbitant bribes, although Romania has a Universal Health Care program.

So, here is my story...

A few months ago, my father was diagnosed with cancer of the tongue, with an accelerated growth rate. He was referred to an Oncology Institute (Fundeni, in Bucharest Romania) for treatment. He went there in hopes of getting the treatment that would save his life. He was denied entry in the hospital, in spite of the fact that he had all the paperwork necessary for admission, but he was told that he would be allowed in for a "fee". So, he bribed the person at the gate and was allowed in. The doctor refused to admit him in the hospital (he had to travel about 120km by train while in excruciating pain to get there), because he said he still didn't have some notarized paper to show that he had insurance. My dad offered to pay cash to be admitted. So the doctor took the money and told him to wait. A little while later, he was being escorted out of the hospital, being told that they could not provide him with the treatment because of the lack of beds.

He traveled to Craiova's Oncology Hospital, but he was not admitted there either. They referred him to the Panduri hospital, so he went there just to find out that although they have an oncology section, they do not have the capability of administering radiation therapy or chemotherapy, and he was sent home. A few days later, he got in touch with a different doctor from the same Oncology Institute (Fundeni) where he was sent the first time. This doctor told him to go there today, and so he went. He bribed the doctor but he was once again sent home. This doctor told him to go tomorrow to a different hospital. They REFUSED to give him any pain medication, he was told to take Aleve and Tylenol. He was also told to rinse his mouth with water and baking soda. He is unable to eat anything, he can't speak anymore and yet, the doctors and hospitals keep refusing to give him the treatment and care that he needs.

I have been sending him money to pay the bribes but my savings account is now almost depleted, I had to sell some of my belongings and he is nowhere close to a solution. I am DESPERATE. In Romania they will just let him die without even trying to save his life. They have been refusing to give him the pain medication so he is suffering tremendously. I have contacted charitable organizations and the Red Cross trying to get help and get him into a hospital but with no luck. I REFUSE to let my father die because the health care system in Romania is corrupt. I think he deserves to be treated like a human being and not left to die in pain.

I contacted his first doctor who was not very nice with me on the phone and told me that he will die anyway eventually, so they were not going to really worry about him or waste good expensive pain medication on somebody in his condition. I would never let even an animal die in pain without doing everything possible. He is only 55 years old and has an 11 month old grand-daughter (his only one) which he's never met.

Is there a law that would help me? Is there anything I can do? Is there anywhere I can turn? Can I sue the Romanian Health Department in an international court of law? Is there ANY hope for us?

I have to abandon my job here (which I am going to loose because of this) and go to Romania. I don't want to watch him die. I need help. PLEASE, I BEG YOU, PLEASE HELP, I am at the end of my rope and don't know where to turn anymore. I just want him to be given the chance to life that he deserves.

Please, help me. If you can not, please put me in contact with somebody who can, or please, forward my email to anybody who might be able to help me save my dad. My family is all I have.

Thank you

I joined this group because I really need support, and not financially, but moral support. I can't even imagine what my dad is going through knowing that his life could possibly be saved but because of money and biurocracy and corruption nothing can be done, it just breaks my heart...

Magda,

I have read your postings and am so shocked. I hope that something happens to help you and your father.

You both have my deepest concern and human feelings.

Martyn

Hello Magda

I am sorry to to hear the problem you are having in getting appropriate treatment for your father. Unfortunately there is a large discrepancy in the service available to patients across the world. I am not sure what to suggest. You need to find the money from somewhere/someone to fund his treatment or palliative care. The only person/organisation I know in Romania is Olga Cridland of ASSOCIATION P.A.V.E.L.. You could ask her for advice. She is very caring.

Hope that helps.

Best wishes
Vinod

Hi Magda, so sorry to hear your story. I hope you find the help you both need. You'll always find plenty of moral support here. Hagg.

Hi Magda, what a sad state of affairs for human beings to treat one another in such a fashion. Have you tried contacting the American Cancer Society? Perhaps they could help, or point you in the right direction. The phone # is 1-800-228-4327....you can also email them. They promise to answer withing 48 hours. I pray they will be able to offer some assistance. Diana J

Hi Magda,

I am so sorry to hear this. But I am not sure if you realize this but in the US you can not be turned away for treatment for any reason. Even if you cannot pay for it. Now that does not gaurantee great care. This is only for life and death, but this is life and death. I have a friend at John Hopkins in Maryland and I will see if she can find out if there is anything that can be done once he is here. This is a horrible way to treat another human being. I am so sorry that you have to watch this happen with your father. I will let you know what I can find out.

Leann

Hello everybody and thank you so much for your words and your support.
I have contacted the American Cancer Society but they couldn't help especially since my dad is not a citizen or a resident of the US. They gave me a very long list of people and organizations that might be able to help, but although I have contacted every one of them, they all said they couldn't help. I thought about bringing my dad to the US and then just taking him to a Cancer Institute, even without insurance, but then I realized that he was granted visa due to the Affidavit of Support I had to file for him in which I am granted responsible for any and all medical care he might receive/need to receive during his stay in the US. So that would never be an option because I could never in my lifetime afford to pay for cancer care which as far as I understood can cost as much as $100.000/month. Right now, I am just trying to figure out what (if anything) can be done here, locally. Unfortunately, the doctors here don't communicate with the patients or their families, I had the bad idea of calling my dad's first doctor who was very rude, hang up on me... Anyway, I am pretty lost... Through somebody in Bruxelles I was able to get my dad to start the Radiation, I just need to figure out what should be done next since the doctors won't tell me. That's why I was reading your stories trying to see what treatments have been given to you and if may be I can get that over here for my dad. It is really sad that in Romania there is no regard to human life, people are left to die worse than animals. The hospitals don't even have basic stuff like Aspirin... He needs the surgery but will never get it in Romania. I asked around other European countries but the costs are beyond anything I can come up with ever.
He started a treatment with plants based medication and he is at least feeling a little bit better. I found out about some mushrooms used in Chinese ancient medicine to treat, cure and prevent cancer, they are called Reishi. Since he's been taking those capsules he's been able to even eat yogurt and mashed up boiled eggs or hot dogs (about every 2 days), so I am hoping they might help.
I wanted to ask you guys if it is normal to have swollen lips during the Radiation treatment... And also if it looks and feels worse during radiation. He said that about 2 weeks after he started the therapy it got about 20 times worse. I tried to do some research but couldn't find much, may be because it affects every person differently...
Thank you all so much for your kindness and for your support.
Magda

I don't remember my lips swelling, but the pain gets much worse and you will get worse before getting better. Sometimes it will seem the cure (so to speak) is worse than the cancer. But keep your eye on the end. When radiation is over it will take up to 6 sixs or more for all of the side effects to wear off. Make sure he keeps eating and moving his neck, mouth and everything. I don't know that anyone else reccomends this, but I used a great deal of massaged therapy for myself. After radiation, not during the skin is to raw. You will need some cream to put on the skin for the radiation burns. These are worse for some not bad for others. The key for this is moisturize his skin if you cannot get medicated cream. I hope this information helps.

Leann

I'm deeply shocked and disturbed by your fathers treatment! It's inhumain and disgusting and i had no idea this goes on!
I'd have died if it wasn't for my g-tube. & not getting sufficient pain relief is not exceptable!! Surely it's an infringement on his human rights???!!! I wish i knew what to suggest
but i hope you're father gets some reief soon.