Beating Cancer

“Prayer said. My wife and I were in your shoes 4 years ago, so I know where you are. Email if you need anything.”

“Ouch -I'm sorry wolfeyes. I've bowed my head and echoed your lovely prayer. Blessings to your whole family. I'm sure you are a source of strength, light, love and understanding there where you are needed.”

“My metastasis scare is over. I had surgery Friday. A benign tumor was removed completely no lasting injury done. The wound is healing nicely.”

“Prayers on the way, wolfeyes.
Ped, great news that's over with and with a good outcome too.

I had a good biopsy report of my mouth and throat 2 weeks ago, no cancer in the samples. I was surprised, but glad to hear it. Unfortunately, my PET scan came back with a 6 mm nodule on my lung. It's too small to do anything except watch for now with CT scan in 3 months, but just another new problem to make me squirm.”

“Thank you for the kind words everyone. My stepmom had bronchitis, went to doc, had chest xray, and it's been sad ever since. Left lung had tumor...doc said he found nothing in PET scan or the full body scan...no other organs or bones had it...they could do a "cut and cure" on this stage 1 lung cancer. However, during surgery, none of that was the case. Lymph nodes had cancer. Now it is stage 3. What sucks is now she has to heal/recover from this surgery in order to be able to withstand the chemo/radiation that she is going to take. She is hoping within 2 weeks she can start all of that and we are all hoping and praying that the chemo and radiation kill all of the cancer. Some people have survived this, and I hope she is one of them.”

“done.

God Bless you and your mom and your family wolfeyes.

Glad to hear your news Pedxing. My prayers are with you too RichB.”

“Ped & Rich, glad to hear the good news from both of you. Hopefully you'll have the same good news about your lung, Rich, although I'm guessing even a benign growth there will require removal?

wolfeyes - that's exactly what happened with my mother-in-law. She had "bronchitis" for 3 months that wouldn't go away no matter what she took, then finally they figured it (obviously) wasn't an infection.

Another prayer said for a good outcome for your family...”

“TECHNTREK YOU GOT MAIL”

“Thanks, if it grows to 10 or 12mm they can take it out then and examine it. At 6mm, the surgeon that looked at the scan said it's too small now for him even to find it if he opened my chest. At some point, I'm looking at surgery to remove it, but only if it gets bigger. In late June, I'll know what happens next.”

“Prayers coming your way RichB. Guess we all need em here on this thread. Hope June brings great news!”

“Thanks, I'm hoping for some good news. At least whatever it is is still small so they can just get rid off it when the time is right. That's already kind of some good news.”

“Rich - I'm glad the big picture looks good, but so sorry to hear about the nodule in the lung. I'm hoping you'll get a decent break from all this crap.

I don't know if you'd be interested in the Stowe weekend - free for first timers. Possibly of interest to Wolfeyes step-father.

http://www.stowehope.com/
last edited: 4/05/07 9:05:22 AM”

“Sounds like a nice event. The local cancer society runs a one day event each summer around here at a local resort. They get a good turnout.

I'm kind of getting a break for now until my CT scan in June. I'm working on getting better swallowing and a new voice in the meantime.”

“I take care of a guy who's beaten cancer back four times now. He uses one of those electronic things you hold against your throat.

Good luck and keep fightin'!”

“That's what I use too. It's called an electo larynx. Most times they work OK, but background noises are a problem. Dead batteries can be too if you don't have enough of them or access to electricity for the charger.”

“He can be hard to understand sometimes because he also has a trachia (SP?) but I've always been good working with non verbal people. I'll tell ya what, since I started working in Hospice care I have seen the shear will of attitude and a positive outlook. My first patient every day is a woman in her 80s who has had polio for 30+ years, just suffered a debilitating stroke and she still smiles every day. I always tell her that her smile sets the tone for my whole day.”

“Benign is such a nice word, eh? Sorry about your nodule, RichB. It's exeterior to the lung?”

“It might not sound too clear based on where you place it on your neck. There should be one or more "sweet spots" where it sounds good. Some people will get some trache noise that can drown out the sound a bit. I have a trache, but haven't had that problem. I had more of a problem on finding a good location where it sounded clear.

Bear, the only thing I know about location is that it's adjacent to the major fissure in the right middle lobe so I guess that's the outside.”

“wolfeyes, did you get my reply?”

“YOUR Voice needs to be heard!
Send a letter to support the Cancer Screening, Treatment and Survivorship Act of 2007.

LIVESTRONG DAY
LIVESTRONG Day is May 16, 2007! We are taking bold steps to making cancer a national priority. 200 advocates will be visiting Capitol Hill, thousands will be participating in local LIVESTRONG day events - even the Empire State Building is going yellow!


Find a local event
last edited: 5/15/07 5:51:08 PM”

“Been in remission for 1 year from 4/28. I have my 1 year CT scan on 5/31. My onco wanted me to have it in April but I just had one in february so I said "no thanks, I'll still be glowing from the last one."

Cheers.”

“good for you bearmagnet!”

“Bear, great news and I hope things continue to go well for you.”

“alright Bear!”

“Kewl Beans!”

“Congratulations BM!!!

My Dr.s told me last Thursday that I've achieved complete remission. I don't even
feel sick anymore, except for some minor side effects. They got me in condition
for a July stem cell transplant. Then I'll be feeling like crap again for a year.

Not complaining - any / every day is a bonus round for me.”

“Great news, bear and Craig!”

“Bear - glad to hear it.

Le Subtil: It sounds like a rough course to follow - I'm glad you;ve made it this far. I'm hoping for continuing good news.”

“Good for all you guys! Keep up the good fight.”

“Sooooooo....long story short (but probably more confusing...just go with it):

Yesterday I went in for my rescheduled one year/last quarterly CT scan. The secretary hands me what I would learn was a new PET scan Order. It says "No contrast". I argue with her several times (2x she goes to confer with my doc) and head off to Radiology. Confused. They ain't gonna find much in me without the contrast unless I have tumors.

I hand over the order and start filling out the paperwork. But Dani & I become increasingly uneasy over a change in the procedures.

We head back to the cancer center. We argue with the Sec. She brings out a very condescending Nurse. we stand our ground. Finally the Dr. comes out. We argue back and forth. She thinks I've confused scans.

We continue to fight the "patient-doesn't-know-dick" until a light bulb goes off in my Dr's Brain.

i was getting CT's b/c my old insurance wasn't approving PET's. PET's are better than CT's. My new insurance is paying for it. I didn't know any of this. Nice they all communicate without the patient needing to be there, eh?

So I headed over to Nuclear Medicine to schedule a PET scan. Earliest they could get me in is Monday.

Nice that radiology was gonna accept a PET order and give me a CT. I almost consumed a litre of Barium along withn a barium enema and it would have been for naught.

Too bad we had to fight so hard to prevent it.”

“Hey Bear, ALWAYS stand your ground & don't take any of their sh&% without an explanation. We're going thru a lot of the same things since my wife was diagnosed. Can't tell you how many times we've thanked GD & everyone else that she's an RN & I've worked in healthcare my entire career! I feel terrible for anyone who doesn't know the healthcare system & has to fight their way through the maze. It is crazy.”

“Yup, docs aren't gods, they are human like the rest of us. Glad to hear you "broke through".”

“Yes. It can often be a hellacious experience. How's your wife doing?”

“Well tech, yes and no. doctors are highly educated/trained humans who are paid a #&%!$load to help other humans. Asking that they look a little harder at my file before they order scans or meet with me is not a lot and should be the most routine of procedures. She's made me panic twice b/c of false alarm in her face as she looked at my records.

I have the utmost respect for my Dr and she does see a #&%!$load of patients. But still, sometimes I'm like "Do you know what the #&%!$ you're doing?"”

“I believe the number is 1,000,000 deaths per year due to medical errors. I'd have to double check that, but I believe that's the neighborhood of the casualty rate.



I found it. This link says that in '01 there were approximately 784,000 deaths due to medical errors. http://www.newmediaexplorer.org/sepp/2003/10/29/medical_system_is_leading_cause_of_death_and_injury_in_us.htm
last edited: 6/06/07 3:41:07 PM”

“Doctors are way over scheduled. It means they either run late or they don't give enough time and attention to each case. It's amazing things work as well as they do.”

“The problem isn't the individuals, be they Doc's or anyone else, the problem is the complexity of the system. Bear & I could go to the same doc with the same dignosis, but his insurance pays for a,b,c & d, while mine pays for e, f, g & h. That might dictate that the doc order different tests, prescribe different meds, send us to different radiology groups, and on & on. Navigating the healthcare maze truly can be a nightmarish experience that I wouldn't wish on my worst enemy.”

“I agree wanderer and doctors have no time to really think past the demands of the system. Sometimes it seems like the patient is not the customer any more - the insurance company is the customer. I worry for shy, uneducated patients and ones who don't speak English - when I think about how many times I've had to speak up to avoid some stupid mistake.”

“I found out long ago that dealing with the healthcare system is one of the worst side effects of getting a chronic illness. To lessen the chances for errors and fix mistakes when they do happen here's a short list of a few things that have helped me.

Contact the same person each time when billing mistakes happen. That person will get to know your case and it saves you having to explain eveything all over again to someone else.

Make yourself known to as many employees in your doctors office as you can. Know their names and be friendly. They'll remember you and want to help.

Keep excellent records, and organize them so you can find them. Write everything down and a keep journal with dates to include procedures you had, drugs you took, etc.

Don't assume that just because someone says they'll do something, that it gets done. Check up on it yourself.

Don't sit back and wait for phone calls from a doctors office beyond a short time. Call back.

Good doctors and their staff are very busy so it's up to you to take an active role to get the results you want.
last edited: 6/07/07 7:39:01 AM”

“That is a great list, RichB. LAF has a free binder (pay postage only) that helps to keep records, notes etc organized.
Information about Aftereffects of Cancer Treatment, Living With Uncertainty, Communicating With Your Health Care Team and more.

Stories of cancer survivors talking about their experiences with cancer, as well as 3 survivorship tools to help you keep track of important information.

Sections for you to add your own records, notes, pamphlets and information from your health care providers.

Because the Notebook is portable, you can take it with you to health care appointments and other important meetings.

You can download the same info from the webite.”

“Gives me hope that I'll actually break through today when I go to argue with my doc's office. Though, its not nearly as serious a situation as yours is, BM, it still irritates me to heck that I'm simply being told what will happen to me, and I cannot get any medical explanation for it.”

“Thanks, that's nice that they make a journal like that. Being the homemade kind of guy I am, I made my own journal long ago.”

“RichB: It is part journal, but filled with all of their support and educational materials. LAF produces. Lance is dropping the hammer on Washington DC. :-D

smiley girl: change doctors and use the internet. Some patients are better informed than their doctors these days. Be careful of the source.”

“Nice advice from RichB.

Thankfully we don't have any cancer to deal with right now, but also thankfully my wife is a Pharmacist who has 33 years experience with patients, doctors and insurance companies.

Our 20 year old daughter has Down Syndrome and wears hearing aids. Getting new hearing aids every few years is an insurance nightmare, especially now that she is entitled to social security and state benefits (which she doesn't really need yet)...what a total mess.

Our doctors have been great...navigating the insurance is a nightmare.”

“My worst experience was this past January. A traumatising test/procedure where the doctor lied about the effects of the anesthesia. I'll never go back to that doctor for sure.”

“That's a great reference Rich. Since my wife & I have a background in healthcare we made our own, but anyone just entering into the system has to have something like that. Another little tip, even if you're the spouse of someone battling a chronic condition like this, you should have your own reference so that you can help out whenever your spouse isn't feeling up to it. I have a 3-ring binder w tabs I made myself so I can answer basic questions, etc., comes in very handy!”

“From 11/05-6/yesterday/07 I've had

7 CT Scans and 4 PET Scans. But how much radiation is that?

PET = 7mSv
CT = 10-12mSv (whole Body scan)

1mSv (SI milliSievert)= 100mrem

We'll go with the "low" number and say I've had 98mSv since 11/05.

Or.................................

Background radiation exposure in the US is ~3mSv/year.

A chest X-ray = 0.02mSv

1 CT = 500 x-rays
1 PET = 350 x-rays

So my 98mSv is 32.7years of background radiation or 4900 chest x-rays

Do you need a CT scan?

http://www.alternet.org/story/44786”

“The radiation risk from CT and PET scans doesn't bother me. I've already had enough radiation that I feel like I'm ready to start glowing in the dark anyway so what difference does it make now. For someone that never had cancer treatment I can see avoiding the scans for no good reason, but for anyone that has been treated with chemo and radiation, that group is already at risk to develop a secondary malignancy anyway. I'd rather find a secondary cancer when it's small by having a scan than wait until symptoms start by not having one. By then damage is already being done and you are likely to lose a body part at that point if you are lucky enough to survive the cancer to begin with. The author that wrote the article doesn't mention that. Therapeutic doses of radiation are far worse than what you'll get from scans.”

“I agree, RichB. On the other hand, If I were only getting PETs than I would have been exposed to 77mSv not 98. That's significant.

And, again I'm no expert, but the more I research the more I conclude that CT scans can't detect blood cancers all that early.

So I guess this is all a selfish personal rant.

And I think I can say heavy drinking after a scan is not such a good idea. I have no proof, but the more I think about it, the more something seems askew. My behavior/condition that night does not match the amount of alcohol I had.

;)”

“For blood cancers, you mean leukemia? Bone marrow biopsies are usually used for that. I doubt the radioactive marker they use for the PET scan is all that great for you anyway. I think PET scans can include a CT scan at the same time and are called PET/CT scans. I looked at mine on my computer and it had both on it and some images are a fusion of both scans. It's amazing technology.”