American Cancer Society Has Let Us Down

JanaMcNulty

American Cancer Society Has Let Us Down Because:

Medicine still treats head cancer the same way medicine did in 1994. I was given a terminal diagnosis. I survived. But not really. I suffered for the last 15 years from the aftermath of 7500 Rads of radiation to my head, throat and lungs. Now, I have received a prognosis of 6 months to live. I have Aspiration Pneumonia. The only treatment which I have declined is a Laryngectomy, where they cut a hole in your throat as your new airway and replace your voicebox with a mechanical one. I am barely understandable now. I have had so many operations in the last 15 years that I will not have any more. I asked my ENT how they treat patient with my kind of disease now, and he answered that it is the same as was for me. I was horrified.

What is the American Cancer Society doing with their research dollars? This outrage can not continue.

More than 1.2 Million people are suffering because of them.

Barbaraek

New treatments

are being developed ...especially in the area of "personalized" medicine using gene sequencing and immunotherapy. There are a multitude of clinical trials and it takes time to move from trial to accepted standard treatment.

The ACS has also put dollars into prevention...they lead the fight in trying to educate people about the risks of smoking, poor diet and getting early screening tests. In addition some ACS dollars are allocated to patient resources such as informational sites, education, and running this website.

Could they be doing more? Of course they could. We as a country should be spending more on cancer research and treatment and we could certainly prioritize over spending money on political ads. 

Barbara

wmc

Sorry to hear what you went through.

As one that has that hole in my neck so I can breathe, I will say I must disagree and the treatment has come a long way just in the last five years, let alone the last 20+. I have seen so many survive this that would not have years ago. I for one would not have survived. I also have seen what radiation has and can to a person. I personally know a family that had the radiation local, which was a big mistake as they almost killed her with radiation. They had it stopped and air lifted to a Major hospital that continued, and she will survive, but will always have some radiation damage.

In my case I have stage 3 COPD and the only option I had was to have the Larygengectomy and breath through my neck, or die. Seeing how I am really fond of breathing I chose the surgery. I never needed chemo or radiation.  I was asperating and coughing up large amounts of blood and only five people thought I would make it. My Son and Brother, Father-in-law and 250 at work thought I was done and not make it through surgery as my weight was down to 126lbs.

I also have several friends that I met here, that lost the battle, and others will also.  I will corect you on the laryngectomy as having it replaced with a mechanical one is not quite what happens. True some will have to use the Electronic Larynx [EL] which is battery powered vibration to talk with but not all. Some never can talk ever again, but they had the choise and they chose to live. Now for me. I have a one way valve in my neck so when I block the stoma [hole in neck] it forces the air into my throat and I have my voice. It sounds like me but a little hoarse.

You were given a chois and you made your dission. In a broad sence they do treat the same as before, but so many options with the type of chemo and radiation and even the surgery has come so far. But to put the blame on the ACS is just a little over the top. Stanford has had a major breakthrough that prevents most types of lung cancer from metastasizeing and spreading, just last year. Just this last week FDA did the first round of approvel on a new drug that is much better then chemo. What I have found is that where you have your treatment does really matter. I had a neck dissection on both sides and 86 glande were removed and other than I am numb on the left side I have no damage that I have seen so many others have. Some are disfigured, can't rase their arm up over the sholder and many other problems with lymph not finding a path and they swell up real bad. I had none. Most of them went to very good hospitals like UC** and many others and the ones that just went to there 'Local" surgeon did not do so good as that surgen might have done two before or maybe none, he is just the hospital surgon.

I am truley sorry of your prognosis, but understand your dission and will respect it. With taht I wish you peace.

 

Hondo

Hi Jana

I understand your problem as I also live with the horrible side effects from all the radiation I had. But please understand that the American Cancer Society is researching and doing all they can to help find new ways to help everyone fighting this terrible problem. In 2002 I was told I had cancer and a 2004 and 2006 I had recurring cancers.

None of this was the fault of the American Cancer Society, it is because of man choice to sin and turn their back on God.

 

Hondo

jtl

wmc said:

Sorry to hear what you went through.

As one that has that hole in my neck so I can breathe, I will say I must disagree and the treatment has come a long way just in the last five years, let alone the last 20+. I have seen so many survive this that would not have years ago. I for one would not have survived. I also have seen what radiation has and can to a person. I personally know a family that had the radiation local, which was a big mistake as they almost killed her with radiation. They had it stopped and air lifted to a Major hospital that continued, and she will survive, but will always have some radiation damage.

In my case I have stage 3 COPD and the only option I had was to have the Larygengectomy and breath through my neck, or die. Seeing how I am really fond of breathing I chose the surgery. I never needed chemo or radiation.  I was asperating and coughing up large amounts of blood and only five people thought I would make it. My Son and Brother, Father-in-law and 250 at work thought I was done and not make it through surgery as my weight was down to 126lbs.

I also have several friends that I met here, that lost the battle, and others will also.  I will corect you on the laryngectomy as having it replaced with a mechanical one is not quite what happens. True some will have to use the Electronic Larynx [EL] which is battery powered vibration to talk with but not all. Some never can talk ever again, but they had the choise and they chose to live. Now for me. I have a one way valve in my neck so when I block the stoma [hole in neck] it forces the air into my throat and I have my voice. It sounds like me but a little hoarse.

You were given a chois and you made your dission. In a broad sence they do treat the same as before, but so many options with the type of chemo and radiation and even the surgery has come so far. But to put the blame on the ACS is just a little over the top. Stanford has had a major breakthrough that prevents most types of lung cancer from metastasizeing and spreading, just last year. Just this last week FDA did the first round of approvel on a new drug that is much better then chemo. What I have found is that where you have your treatment does really matter. I had a neck dissection on both sides and 86 glande were removed and other than I am numb on the left side I have no damage that I have seen so many others have. Some are disfigured, can't rase their arm up over the sholder and many other problems with lymph not finding a path and they swell up real bad. I had none. Most of them went to very good hospitals like UC** and many others and the ones that just went to there 'Local" surgeon did not do so good as that surgen might have done two before or maybe none, he is just the hospital surgon.

I am truley sorry of your prognosis, but understand your dission and will respect it. With taht I wish you peace.

 

Not all local docs or medical services are substandard

If you are suggesting that bigger or more widely known facilities are automatically better I would have to disagree.  I personally know people who have gone to some of the biggies and their outcomes have been no better and in some cases worse than they expected.  How about this?  I live in a town of 25,000 people and was treated locally.my rads were done here using TomoTherapy which at the time was the best available anywhere in the Country ( now I would likely opt for Proton Therapy).  I had my Erbitux administered locally as well and the cancer clinic was always packed with people.  My ENT is great and did his undergrad and residency at the U of FL, my medical onc holds a Phd as well as a medical degree, my rad onc is equally as good and is part of a huge national organization consisting of hundreds of offices.  Personally, I have done well, ned for over 4 years, no issues with saliva, hearing, teeth, muscle pains or anything else related to this disease or treatment.  I feel fortunate to be able to say that and perhaps I was lucky if one can even use that term but I certainly will give my local "team" a lot of the credit for getting me through a very difficult time. I had the means to go anywhere and after looking at all of my options I decided to stay right here. I will say this, there are good docs everywhere and that is also true about bad ones.  People need to do their research and when they do they may just find the best treatment is just down the street.  Best Wishes to you and everyone on the forum for 2016.

 

kdot2003

Hi, it sounds like you are

Hi, it sounds like you are very angry and want to blame somebody.  Of course you are very angry.  You dont want the treatment they have given you the option of having and you have 6 months to live.  Both of these choices are very scary.  I am so sorry.  Blame who you want if it makes you feel a little better.  We just have a "rare" cancer.  The more common the cancer the more funding you get.  Its sad but it makes sense to me in a weird way.  Sorry.