Hello All,

I'm looking for the best cancer centers in the world, any ideas or suggestions? I'm looking in the US and UK and even in Asia. I'm looking for a center that has drugs outside of chemo and cisplatin ..

Thank you,

H

Dear H - As a start, you could check them out here:
http://www.oralcancerfoundation.org/resources/cancer_centers.htm

All I can say is good luck and be mighty careful.

Hi Herson,
I'm going to stick my neck out here and hope you won't think I'm being to nosey. Does your mom want you to go to this extent? You don't need to answer the question, and I'm sorry if it offends you.
Minnie

Minnie,

Its no problem, thats why im here, to take and give information, feedback, personal input etc,

I haven't told my mom about the 6 months, but I what I was planning on doing was to send out mom's information to a couple of hospitals outside of Canada .. and see what they have to say.

If they think something can be done or improve her standard of living than its something I will tell her, but if it comes back the same then .. yeah

I just want a second opinion and since the Hospital we currently are going to is the leading cancer hospital in Canada, I'm thinking that its probably good to go somewhere in the US. I was thinking New York, something thats not to far, .. but i dont know

let me know your thoughts .. obviously .. you can tell i dont have a clue what im doing lol

H

Herson:

I dont know if this helps. I was treated at Lehigh Valley Hospital's Cancer Center in Allentown, Pennsylvania. This hospital is number 48 out of all the cancer treatment centers in the United States. I was given cisplatin and chemo, for me it worked, my first PET scan showed the cancer was gone. I dont know what alternative treatments the hospital offers. All I can say is it worked for me, everyone is different and has varying degrees of this awful disease. As a parent, I see what a great son you are to your mom trying to get her help. Is there any other doctors in your area that could give you a second opinion and maybe other options?

You are very young to be assuming the burden you have undertaken. Even when we are older it is overwhelming to face a parent's illness and feel helpless. Is there anyone else in the family or a friend who you can talk to? As difficult as it may be, you must realize that your mother is entitled to a say. Ask her if you have her permission to consult with other facilities.
Please remember that doctors were given permission to heal, not to predict. Don't be so afraid of the "6 months." Read some of the stories here and you will see that doctors are neither mathematicians nor prophets.
You are at a very fine facility. Speak with the doctors involved in your mother's treatment and ask them if they have any suggestions beyond the care she is now receiving. It is never an insult to a doctor to request a consult. The doctors at such a facility have a better knowledge of who may offer the best input on your mother's care than can any lay person. Also if you do decide on a consult, exact information on your mother's history including all treatments, tests,etc. can be transfered properly, easily and precisely between the facilities. There should be some omsbudsman, case worker or some such who can help you with this.
May the One whose commandment to honor your mother you are so lovingly fulfilling give you the strenght to go forward with whatever you decide.

Malka,

Your right, at any age its very overwhelming .. its something being the oldest of 3, i feel i need to do... of course i respect her wishes, but thought theres no harm in getting a second opinion. I just feel the doctors are giving up by telling me the drugs are not working .. giving up is not something ive been taught..

As for talking to others about this, ive stopped, everyone has an opinion, i just personally dont feel like talking about it ..

i dont know if its the 6 months that bothers me .. or the fact they can actually sit there and say 6 months, i personally know one person who was given 1 year for lung cancer and lived almost 3 years .. but I do plan on consulting all the doctors at the current hospital before deciding what to do

thanks!

I find your statement "i haven't told Mum about the six months yet" quite astounding really.Your Mum is a relatively young woman,and i presume in control of all her facultys,so why are you being given information about her that she is unaware of?

As a woman of a similar age i am not sure i would appreciate either of my children making decisions on my behalf,without even consulting me,let alone discussing the plans they had with other people.
My personal opinion is that the only person you should be speaking to is your Mother,who may appreciate a little honesty,and i am sure will have her own wishes about her future.

The thought of losing a parent at such a young age is devastating i know,i lost my own Father at the age of 51,but you can't let your feelings over rule her rights to make her own choices,and whatever they are you must respect them,even if they are not what you would wish.

I hope you dont think i am being harsh,i just feel like someone needs to point out your mums possible point of view,and also to say you could be treading on dangerous ground if she finds out from another source.

good luck liz

Liz,
I agree with you on this one. 100%... 50 is young... believe you me!

I also agree with Liz, but I have another question. Why is it YOU telling your Mom she has only six months? Why aren't her doctors telling HER this. Then she could make a decision to seek a second opinion, etc. I don't understand why a doctor would withhold this info from her.

MD Anderson and Sloan Kettering are usually considered the top two centers in the US but there other top rated facilities also, Dana Farber and Johns Hopkin also come to mind. There are also many in California, but I'm an east coaster. I'd seek help from her doctor as to which would be best for a second opinion for her particular cancer case.

Take care,
Eileen

I totally agree, she should know but the doctor never told her and he wasnt going to tell me and my family but i asked on my own...

The doctor wants her to get her strength back so that they can look at other options and or trying chemo again,... shes way to weak .. and i think thats why the doctor didnt tell her because if she gets her strength back we have some options...

That being said, shes extremely weak, she cant even lift her arm, and since that appointment shes really been pushing herself to take get more energy and strength through increased feedings.

If she can get another treatment in say next month, at least we have some options.. We are meeting the doc again in the second week of feb and if he feels at that time he needs to tell her, he will

I am sure my mom has an idea but why break her spirit.

Eileen,

We are in the process of getting second opinions,

We have contactred MD Anderson, they should have an answer for us in a week on my mom's case.

Sloan Kettering and Hopkins is next on the list.


As for the time, 6 months, I asked on my own. I dont think he was planning on telling us, and the 6 months is based on "patients" at my mom's stage who are no longer able to recieve further treatment.

We have an appointment next month and My mom will be strong enough to try a treatment or two. She has increased her Cal intake from 1000 to 1500 and by this weekend she should be at 2000, in 3 weeks she should be able to convince the doc on another treatment or solution...



H

This just doesn't make sense to me. If she is too weak, and she is that bad, why no appointment until February sometime. All Drs let the family know without having to be asked whem someone is critical. Some thing seems kind of fishy here.

Yeah, I dont know

This is why I want a second opinion. When we saw the doctor in December he said lets give her a break.

They did a CT scan, now shes very weak and hes like shes to weak to continue. Now he wants us to wait another month.

They only did 2 rounds of chemo and there hasnt been any reaction. Is 2 rounds of chemo with no result enough evidence to show a patient is untreatable?

Eileen,

I'm sorry but your description in your signature line is a little hard for me to understand. Has your mom already had radiation back in 2006? When was the re occurrence confirmed? What has been done to her since that time?

My mom had surgery back in 2006 and they removed 30% of the tongue. In September 2007 a lump was found in her neck, the CT scan showed small spots in her lungs.

They did 7 weeks of radiation and 2 rounds of chemo for the neck/lungs. They confirmed that cancer is growing back in the mouth on Jan 14, through the ct scan...

since Nov 27 or something she has had no treatments for the mouth, neck, or lungs. Before they wanted to give her time, now shes to weak and now they want to meet in another month ..

I had 30% of my tongue removed on Aug 3rd. At a follow up visit I told the Dr about mt tonge bothering me and that there was something on the opposite side from the surgery. It came back on both sidesand there is no waiting involved. My teeth were pulled the 17th of Jan and I will be getting rad seed implants very soon. Then start chemo.. I hope they don't wait too long to check your mother.

Son,

I don't understand why they think she will get BETTER by waiting a month or whatever to get treated. She needs attention NOW or their won't be a later. You need to make some real loud noises and get her the attention she needs ASAP.

David ,i am geting confused here,it was my understanding that they didnt tell her she would get better,and that herson was told she had about six months.Please feel free to correct me if i am wrong,but herson has several differnt threads going on different boards so i may be way off beam here.

I'm confused to. If she has been told she only has a few months to live then what are they waiting for her to get strong for?

Guys,


Back in November 2007 they finished 7 weeks of radiation and chemo to the neck/lungs. At the beginning of December we met with the doctors and he said the radiation has done a lot of good and bad lets give her a break.

When we met with them on the 14 of Jan, he said shes too weak, the CT scan shows growth in the lungs, neck(visiable now), tongue (not visiable to the human eye yet). He also said the chemo and cisplatin(sp?) didnt help...

He wants her to become stronger (we are meeting in Feb), so they could look at some treatment options, he said another round of chemo at this stage might make her even worse...

The 6 months he didnt tell her, I came back into the room after my mom left, and asked him about time frame and he said patients in her state where the chemo/drugs has had no effects we are looking at 6 months....

Now, like obviously the cancer is going to continue to grow because these guys aren;t doing anything. IF i cut myself and let myself bleed for 2 months im sure im not going to get any better right? Now is she weak because of the lung cancer? or is she weak because shes not getting enough nutrition?

I just want a second opinion, if the cancer in the lungs grew 10% in 3 weeks (according to the CT Scan/doc) then something should be done? .. Sitting around isnt going to do much?

give me some thoughts here guys, im just fishing

I am here in Ontario and I was just wondering who your mom is seeing...is it at PMH?

Son,

I agree with you...something needs to be done NOW. I would try to get another opinion ASAP.

SCC lung mets are very difficult to treat. They may, in fact, be discussing palliative treatment and they want her strength built up to begin that protocol. Palliative treatment is used to extend life and minimize pain, shrink tumors, etc. The weakness could be caused by malnutrition or possibly low blood oxygen levels due to the lung mets (possibly even low TSH levels from radiation damage to the thyroid).

Some people just don't respond to treatment I am sorry to say and recurrence in the first year can have very serious consequences. I wish that I could give you something more positive to hold on to. No one should have to go through this...
We are here for you.

Son,

You have looked into many avenues in search of ways to help your mother.
You have received much good advice and support from this forum. You have spoken with your mother's doctors.

Have you been in touch with any clergy? Every hospital has a chaplain. Particularly if your mother is receiving care at such a major facility the chaplains are experienced with the heartbreaking situation you are experiencing. Although she is not currently hospitalized there they should be able to help you and can even steer you to someone of a particular faith. Have you spoken with a clergy person who is familiar with your mother and or yourself? Every faith has specific prayers for troubled times. Be as agressive with this as you have been in the other paths you have been exploring.

Enimatic,

She is at PMH - the team went from a Surgical Oncologist, Radiation Oncologist, and an ENT?

Does PMH have a policy on SCC lung cancer patients? I remember the Radiation Oncologist saying to us that if and when lung cancer in the lungs is confirmed they would have to stop radiation to the neck (and they did, once it was confirmed) ...

Do you want the names... i can PM them to you?

Most pastors will be more than glad to visit her at home or in the hospital. Mine has even gone to Columbus, Ohio with me and to <Morgantown, WVA He is a very special and caring person. Most are.

Hey Herson,
WhenI was getting second opinions for my mom, i realized how important it is to do them all at once. Therefore if you don't get the results you want from your first choice, you will still have options. go to the hospitals websites and start emails. I emailed and called doctors directly. Don't go through the main hospital try to to go straight to the Doctors.
Also becareful of "protocol." Protocol is a big reason why my mom can't have moe treatment. She was iven the old school radiation and now she can not have anymore. Go where treatment is advancing not where there is a strick standard of care that doctors are unwilling to to admit it maynot be the best.
Let me know if you need help with contact information.
Amy

I must admit I agree with Gary....SCC mets are very hard to treat. PMH is essentially the 'centre of the universe' for cancer care in Ontario, if not in Canada. You may send me the names of your specialists and I can let you know if I know anything about them and their protocols. I am sending a patient of mine down there now with suspected lung cancer.