Jump to content

Inoperable "huge" wrapped around heart, trachea...


Guest bean_si (Not Active)

Recommended Posts

  • Replies 79
  • Created
  • Last Reply

Top Posters In This Topic

Cat

I can't add anything of value that hasn't already been said by the wise members of this board. I am so sorry that you got bad news, and I hope that once you have had a chance to digest it, you can get back that fighting spirit.

Please seek second opinions on diagnosis and treatment options.

Please search the internet for non-traditional medicines that might help you. A website that might interest you is www.lef.org. My mum has recently started taking inositol. Have a look at this and IP6.

Jana and I have often mentioned Ian Gawler. Please visit his website www.gawler.org. He is such an inspirational man - I would recommend strongly that you read his book 'You Can Conquer Cancer'.

It can be done, Cat. Please don't give up.

Karen

Link to comment
Share on other sites

Sorry to drop off like I did today, but there was a real world crisis with which to contend.

Cat, I'm going to do some checking and try to find out what hoops have to be jumped through in order for you to be seen elsewhere at your HMOs expense...

Is the insurance through an employer and is that employer affiliated with the Federal Government at all? (Even if they are civillian contractor or subcontractor).

One of the things we should all bear in mind is that these are exactly the kinds of problems faced by HIV/AIDs patients in the early days....and it wasn't until they banded together and began to "attack" these individual cases as a cohesive group that things began to change for them.

Cat, when my Mom faced Lung Cancer and the Military Medical Community it was at the height of the first Gulf War. My Mother was told by the doctors that surgery to treat her Lung Cancer was an "elective" procedure, and that ALL elective procedures had been cancelled in preparation for the anticipated casualties of the Gulf War Conflict. She didn't let me know about what they had told her until several months later, but when she did tell me it was with the intention that I (her Pit Bull) would see to it that she received what she needed. And I did. My first telephone call was to the Commander of the Hospital at a major military medical center, and after introducing myself to him and refreshing his memory about who my Mom was I asked him how he was going to handle the questions that would arise when my Mom (the widow of a Veteran of World War II, The Korean Conflict, and Vietnam) was interviewed by PEOPLE Magazine on the subject of US Civillian Casualties on US soil as a direct result of the Gulf War? Mom was restaged for possible surgery within a few days, but by this point had multiple brain mets.

If you are willing to share very specific, personal information I will do my best to find out what you must to do get what you need.

You and Elaine are not invisible to me. I see you and I hear you. And I can't help but believe that if the nearly 1300 of us band together we can find a way to get all of us what we need.

I'm signing off for the night, but I'll be looking for info and answers in the morning.

Link to comment
Share on other sites

Cat,

I just did a very quick look-see on your insurance company and they are very into issuing press releases, keeping their names in the forefront of business publications, and courting public opinion using the media. Quite a few testimonials by HMO Members, that kind of thing.

Bad press isn't something they would be too happy about, know what I mean?

You know, at this particular point in my life I've accepted that I can stick to my personal desire to have medical privacy and die by trying to keep things "private", or I can get very, very public, get the care I need, and worry later that just about everyone on the planet knows I have cancer and genetic kidney and liver disease. I've opted to tell the world (my Congressional Representative included) and worry about everyone knowing my "business" later.

I'll let you know what I dig up.

Link to comment
Share on other sites

Cat,

I am not sure where you live, buy I agree, go elsewhere or to a big cancer center!!! MD Anderson, Sloan Kettering, etc. Maybe if you give a city, people can give you ideas on where to go. DONT give up

Link to comment
Share on other sites

Guest bean_si (Not Active)

Fay I worked for 18 years for a city in (delete identifying county), 16 of those years as a computer nerd in a law enforcement agency for the city.

Others, when you're HMO, you CAN'T opt to go to M.D. Anderson, etc., unless you're willing to pay for it and most people who have HMO have it because their funds are already limited. I don't have enough monthly to pay my basic expenses (mortage, water, association fee, food, etc.)

When I wanted just a second opinin at M.D. Anderson WITHOUT treatment of any kind --- even for them to advise a type of treatment, I was told that I would have to get my medical oncologist to write a letter that it was medically necessary to get that treatment. Now, this dude won't even agree with the biopsy which I paid for. He is more ego than sense and I can't get any paper saying a second diagnose is medically necessary. And if that decision is made? From what they've said I don't have the option to get that treatment. :-(

I only spoke to my oncology care manager from insurance company twice. the first time she introduced herself. the second time she quickly went into what were my choices for end of life treatment and that I'd better think about that. That was back in December 2003. I was shocked. What about keeping my alive and functioning? Maybe too expensive? I told her that if she didn't have something to add to what I could do to get cured or extend my life, I wasn't interested in talking to her. She never called back.

Cat

Link to comment
Share on other sites

Guest bean_si (Not Active)

I hope the last post didn't sound like I was angry at anyone. I'm not. I'm angry at me for not listening to that inner voice months ago when something told me my diagnose was amiss. I'm angry at the doctors for fighting M.D. Anderson. Even the surgeon yesterday insisted it should be treated like SCLC. Does he know? He's a thoracic surgeon and can't speak for what chemo drugs, treatments should be used.

I'm just tired.

I couldn't make it if it wasn't for you guys so don't anyone be mad at me.

Ginny, I like the fight like a cat picture.

Karen, I am looking into alternatives.

I wish I wouldn't wake up just a couple hours before I went to bed. The nights have monsters. They're waiting in the corners, acting all innocent until I turn my back.

Cat

Link to comment
Share on other sites

Cat, I hate to be a ditto head but I agree with Fay. Its not time to give up. There may be a time in the future when all of your options are gone but not yet. Meanwhile, you are in my prayers hoping that you find a new competent doctor soon.

Nina

Link to comment
Share on other sites

Guest bean_si (Not Active)

I came home, logged on and posted here. I started to cry as I did so. My dog got upset and tried to jump up on my lap (impossible).

Then I went to sit in the chair in front of the laptop/DVD to watch Finding Nemo. I hear my wee dog jump on the packed bookcases (even I can barely extricate a book). She starts scrabbling then jumps down and walks over to me. In her wee jaw, she had a thin brochure that came with a CD. The title: Cancer Survival Toolbox.

I wonder if God ever sends angels in disguise.

--------------

Added later - changing subject

I don't see why I can't now have chemotherapy for NSCLC. Only the onc keeps going on about it's really SC and should be treated like that (no different/new chemo drugs). I'm sure his fear of lawsuits is at play here. (i.e., he treated me for right cancer and shouldn't be sued) I'm going to call today, say what I was told yesterday and asked to see him to discuss options. This will have to be in the next week. Otherwise, I will find another oncolgist.

----------------

Still adding more

http://www.umm.edu/news/releases/heart_ ... e=overture

Link to comment
Share on other sites

Guest bean_si (Not Active)

okay Elaine, forgive me i'm on meds. i ven't slept all night. I have info from md anderstand and maryland university that's doing ground breaking work separate tumor tangled in heart and replacing with animal parts. i know sounds bad the woman is alaive. The heart had been taken completely out.Is this how sleeping pill is supposed to work. mayb e cause i didn't sleep last nght. i better sleep.

i'm not giving it up.

Link to comment
Share on other sites

Cat, My heart aches for you and am sorry you have such #$%^ doctors.

Doctors are not god and kinda get sick of them acting as if so.

This story is proof doctors are far from always right. My girlfriend Laura

her mom Patty was diagnosed with a terminal cancer in the early 80's

and was told there was nothing they could do for her and she had 6

months at best. Patty had kids and told them where to stick there diagnosis of 6 months. Patty lived almost 7 years and passed away not

from the cancer but pnemonia .{ spelling ?} You keep fighting and show

these doctors that they are not god. Haylee

Link to comment
Share on other sites

Cat,

I understand about about needing the referral to see someone else and the doc not writing the referral. Been there, a couple of times.

First off, I am not an attorney nor a physician, and I am not practicing law or medicine without a license.

Please listen to what I am saying to you;

You MUST put your concerns in writing. You must file a complaint with your HMO-in writing with supporting documentation-telling them in detail about the errors made by the local Oncologist, the whole pathology report fiasco, etc. and you tell them that you are formally requesting authorization for a referral to another facility for treatment. And you tell them you want it ASAP, not 3 weeks from now. You send that to your insurance company, your case manager registered mail return receipt requested, along with FAXing a copy to them as well.

When you make a telephone call, it does not meet the requirements for legally acceptible proof that a subject was discussed by you with your HMO. That is why a telephone call does not protect your rights in most situations. Unless you record the conversation-and you don't do this unless you truly understand your State and the Federal Laws on the subject of Eavesdropping-it's very easy for someone to ignore what you say, or claim the conversation or call never took place at all. But when you send it in writing, and someone has to sign for it, and you've kept a copy of the missive, it is much harder for them to ignore. There might be consequences for them if they ignore it...legal consequences. They don't like that. So they're more likely to be responsive.

Cat, I'm going to tell you what I tell others. The first thing you have to do is decide whether or not the life you are trying to save is worth the fight you may have to put up to save it. Because you are in for a fight. No one is going to be able to fight this battle for you. We can fight it WITH you, but you have to be willing to play hardball.

I am not angry with you, Cat, not at all. But I'm not going to expend my time and energy on this without a firm commitment from you that you are going to start doing what you must to protect yourself. Don't forget, right now I am a stage IV cancer patient who has only one lung, the left, and there are tumors growing in multiple locations in my chest and back that are constricting the oxygen flow to that one lung. I have genetic kidney and liver disease with symptoms all on it's own, and a "benign" brain tumor that makes my head hurt these days. Add to that not-so-micro mets along my veins and I'm feeling a little less energetic than I did a few months ago. You let me know what you can do, okay. And I hope you aren't angry with me for being so blunt, but if I say it straight hopefully there isn't going to be any miscommunication. I want to help, but since I KNOW what taking on an HMO can be like I can't afford to do try to help unless you are serious about following through with things. (When first diagnosed my HMO denied both the original authorization for treatment and the appeal to that denial, stating that treatment for Lung Cancer wasn't "medically necessary".)

You let me know.

Much Affection,

[/b]

Link to comment
Share on other sites

(((((((Cat)))))))))))))

One other thing.... there are very talented and skilled thoracic surgeons. Just because the one you saw doesn't have the skill or experience to tackle your tumor doesn't mean that others can't do so and do so successfully....but you aren't going to find these stars of the surgical world in your local community medical center unless you live in a town that has a world class hospital. You got to go out and look for them, then convince them that this is a risk you're willing to take and that you have the fight in you to live through the surgery, the recovery, and the crap you have to deal with afterward (chronic pain, shortness of breath, etc.) for the chance to be able to LIVE longer.

I have to agree with Fay -- get out there and find another surgeon. I can't recall where you live but if there is ANY way to get a consult with Dr. Larry Kaiser at the University of Pennsylvania, GO FOR IT!!!!!! Now, I may be biased because he was my surgeon, but I also know that he is world known for being an aggressive surgeon and have spoken with MANY patients/survivors who credit him with taking the surgical risk when other docs would not touch them and say he saved their lives.

Here is an article regarding the hospital and Dr. Kaiser:

While most hospitals have cancer centers, only three in the region have been ranked in the top 50 by U.S. News & World Report’s survey of “America’s Best Hospitals” and have received the prestigious “Comprehensive Cancer Center” designation from the National Cancer Institute. To earn the nci seal of approval, a center must boast doctors with national reputations, provide treatment based on the most current advances, and excel in research, community outreach, professional education and information services.

Abramson Cancer Center, uphs >>> The Abramson Center captured the 12th slot in the 2002 U.S. News survey. At any given time, there are at least 200 clinical trials open to its patients, all supported by $140 million in grants, making the center the fourth highest grant recipient in the country. While strong in nearly every type of cancer, the center stands out in lung cancer (Larry Kaiser is one of the nation’s leading lung surgeons), hematologic malignancies such as leukemia and lymphoma (the center leads the region in stem-cell and bone-marrow transplants), and pigmented lesion/melanoma (the oldest program in the country) (3400 Spruce Street; 800-789-PENN).

I wish I was there to give you a big hug.

Link to comment
Share on other sites

Guest bean_si (Not Active)
CatBecause you are in for a fight. No one is going to be able to fight this battle for you.

No one ever has fought a battle for me. How do you think I'm still here. No one protected me from the monsters in the basement when I was five. The monsters that had a name and tied me up and tortured me. It was real. I had many years of that.

No one ever helped when an aneuryism in my brain ruptured open. I recovered and regained my skills on my own while raising two kids.

Oh there's more but I'll spare everyone. I've been fighting and fighting and fighting.

I come here today, visited the "Life After Death" Spirituality conference and found an absolute mess with many posts indicating participants such as myself are not wanted here. I don't want to get into it. I've found a long time ago, that when people "decide" on certain issues, nothing will change their mind. Let them be and hope they will let Elaine and myself be.

I know I have to be my own advocate. I'm just tired and without money. I was so afraid of never seeing my daughter again. I had arranged previously for a ticket so she could fly down in a couple weeks. She called and said she had no money (why would she need much? I paid for the ticket and she eats and sleeps here) so couldn't come. Last night I told her about the cancer. Today she called saying okay, now she would come but I needed pay her rent and to federal express the check.

I'm so tired. I'm just tired. The only impact I seem to have here and in my life is to make people dislike me. I'm not of much use and THAT is the truth.

Cat

P.S. Fay, this post is not "to" you. I really appreciate your help. I just used that springboard to express my feelings.

Link to comment
Share on other sites

UPenn Surgery For Cancer-Ridden Lungs

Penn surgeons perform -- and teach -- a once-rare procedure: saving clear portions of cancer-ridden lungs when even a main pulmonary artery is involved in malignancy

Procedure has lower risk and leaves patients with more stamina than complete removal of the lung

When a surgeon opens the chest of a lung cancer patient and finds that the malignancy has spread from one of the lungs to its pulmonary artery, he or she will almost always remove the entire lung.

But doctors at the University of Pennsylvania Medical Center are performing and teaching a surgical procedure that routinely saves part of the affected lung, leaving the patient with more stamina, the potential for normal activity, and the same long-term prognisis.

In fact, when a lung is removed in its entirety, "there is a much greater risk of death after surgery, and certainly more shortness of breath permanently," according to Joseph B. Shrager, MD, PhD, a thoracic surgeon and assistant professor of surgery at the University of Pennsylvania Medical School.

Even though there has been scattered anecdotal evidence (and one other large published study) since the late 1960s that indicate the advantages of the lung-sparing procedure, which is described in medical terminology as a "lobectomy with tangential pulmonary artery resection," very few doctors have been willing to attempt it.

"Ninety-five percent of surgeons who operate for lung cancer are not comfortable with the procedure," said Shrager. "They're afraid of bleeding, and they feel it's too great a technical risk."

But since 1992, Penn's thoracic surgeons, led by Dr. Larry Kaiser, have successfully performed about 40 of the surgeries. They've found, according to Shrager, that "in most cases the procedure is only slightly more difficult than removing the entire lung."

A report of the team's findings based on the first 33 cases was published this summer in the Annals of Thoracic Surgery, and earlier this year, Shrager presented the results of those cases at the meeting of the Society of Thoracic Surgeons in Fort Lauderdale, Fla.

Decision-making in the operating room

In lung cancer, it can take from six months to two years before a malignant tumor is detected. Surgery is a viable treatment only in cases where a non-small-cell malignancy has not yet spread from the lung to the brain, bones, liver or adrenal glands. (Small cell carcinomas are most commonly treated with only radiation and chemotherapy.)

But when surgery is the clear course, even using the most sophisticated medical technology, a doctor still often cannot be sure before opening a patient's chest whether there is involvement of the pulmonary artery.

"We'll tell people, 'We take out only as much as we need to,'" Shrager said.

And so the final choice between a traditional pneumonectomy - the complete removal of the affected lung -- or an attempt to save part of the lung, is one that must be made on the floor of the operating room.

The delicate work of arterial resection

The most daunting part of the combined lobectomy/resection procedure is the pulmonary artery resection: The wall of the artery that is overgrown with malignancy is removed, and then the artery is stitched back together.

But the thoracic surgeons at Penn have found the surgery only slightly more challenging than traditional lung cancer surgery.

"Typically when we're doing the procedure it's a left upper lobe cancer and the tumor is growing into the pulmonary artery," Shrager said. "As long as it's not extensively growing into the artery, basically we clamp the pulmonary artery above and below where the tumor is invading, and then cut out only the side wall of the artery where the tumor is attached, causing a tangential incision, and then repair the artery."

"This is something that can easily be taught," Shrager said. "And it's something we hope to see become a standard procedure, whenever possible. The value of the technique is that patients who undergo this surgery appear to have the same chance of being cured of the cancer as those undergoing complete lung removal, but they will not experience any diminishment in the quality of their life."

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.