@Beth Gallagher, please don't think I take what's happening to you lightly because I don't. I want to bring as many smiles to your face as I can. What's happening to you brings back memories of when I was caring for my mom and to know that she was dying right before me every single day was really hard and I tried to find every chance I could to make her smile too.
Von, I'd never believe that you are taking my situation lightly. You are so kind and positive that I look forward to those smiles very much, and I appreciate your taking the time more than you know. In a way, a cancer diagnosis is very isolating; no one seems to know the emotional turmoil unless they have been where I am. So these uplifting posts from people mean a lot.
Since I've decided this thread will be a diary of my cancer experience, I have a few thoughts I'd like to put out there because they are running around in my head. First, regarding MD Anderson (and I assume most of the "premiere" cancer treatment centers.) It is well run for the most part, but after a while you realize that you are just one more cog on the Cancer Assembly Line. I fully expected to be receiving state-of-the-art treatment... and maybe I am. But honestly I wonder if any of the other treatment centers in this area would be as capable. Apparently millions of people with no access to MD Anderson are alive and thriving in spite of being treated at a "regular" facility. I have joined a Breast Cancer discussion forum where I have been calmed by "success" stories and terrified by the not-so-successful. There is a lot of hope and inspiration, fear and uncertainty, and a prevailing sadness to that place. That said, every poster shares their diagnosis and treatment plan. Much to my surprise, no matter where they are being treated the treatment seems to be exactly the same, down to the "cocktail" of chemo drugs administered. So I have to ask myself, why was I so convinced that MD Anderson offers me any advantage? Apparently there are standard treatment protocols for the different types of breast cancer no matter where it is administered. The only difference I have found so far is that I seem to be having every possible test or scan that my insurance will pay for. Are these all necessary? Who knows. Last week I was approached about participating in a Clinical Trial, which I ultimately refused after finding that my insurance company considers that "experimental treatment." Do I want to be an experiment?? And the larger question... WHY would my insurance company have to pay for trials at all? I'm certain these are driven by Big Pharma to have human guinea pigs test their drugs, so why aren't they footing these bills? I will continue my treatment at MDA since I have started it there. But after treatment is done, I will be moving to an oncologist that is closer to my home and not as monolithic as MDA. (I will have followup scans for months and years after treatment, if I survive that long.) It is a huge inconvenience that not only do I have to deal with the very impersonal and somehow dehumanizing treatment of cancer, but I have to have anxiety about Houston rush hour, parking garages, huge and confusing medical facilities, etc. So in my haste to get to "the best," perhaps I didn't. I don't mean this as a criticism of MD Anderson, but more of a learning experience for myself. I believe I am receiving good care and I am hopeful of a positive outcome. But I have to wonder would my eventual outcome be the same at any other cancer treatment facility... and perhaps, a little more personal.
Not to poach your thread, but you've echoed my experiences with University of Virginia Health Care Systems. It's so highly rated yet I find nothing special to it. It's only "advantage" is it has successfully sucked up all the smaller practices in the region (and its region is huge.) I'm still struggling with this system, and that's after rejecting the first two doctors they hooked me up with because...as you said...patients there are merely cogs. It boggles the mind. I applaud your not just throwing yourself into the system with blind trust as so many do. It's tough figuring out the right thing to do when we lack all the data (and we want--and need--perfection), but to not take responsibility and some amount of control is such a foreign concept to me...and likely to you, too. It seems that in this short period of time you've found that your treatment options are pretty universal, and you're already forward-searching for that convenience, trust and emotional component that counts for just as much as technical care...maybe even more. Good for you!
@Beth Gallagher Glad to see your up to posting for us. Bless your heart I as sorry you have so much to go through and so fast. Why couldnt you change places now if you wanted to? The less stress the better for you I think. Cant hubby drive you there although he cant be with you.? Can someone else drive you ? Take a bus or the train? Everday you wake up and know who you are and even feel pain..you are alive and had sucess in greeting another day - another moment. Your in my thoughts and prayers everyday.
In no way are you "poaching" this thread. I appreciate anyone's input and if I am wrong I hope someone will point that out to me. My mind is pretty much scrambled these days with "what ifs" and second-guessing. I am a doctor's nightmare because I make sure I learn everything I can about my diagnosis and the possible treatment/outcome, and I am not reticent about speaking up. Last week I mentioned to my oncologist that if we were not on the same page with treatment, I'd like to know what my options are for selecting a different oncologist. The diagnosis of "inflammatory" breast cancer is clinical... in other words, no laboratory test will give the positive diagnosis. The doctor(s) examine the symptoms and decide whether it is or is not "inflammatory." One test that I had read about (a skin punch biopsy) is supposed to be an actual indicator that the cancer is in the lymphatics of the breast skin, and my punch biopsies were both negative for carcinoma. Should I make a big deal of this? I don't want to alienate my treatment team, but I want to KNOW. I realize that there are many cancer patients and in no way am I unique or deserving of special treatment, but a little humanity would be nice. I also can't help but believe that my age is a factor, and perhaps the larger interest is the fact that I have good insurance so I get the "full monty". I suppose I should focus on how "lucky" I am to have access to treatment, and try to improve my general attitude (as Lulu mentioned). But of course I can't magically turn into someone else so I'll continue on my course of skepticism.
Gloria, I appreciate those thoughts and prayers so very much. Every bit of kindness I receive touches my heart. I could certainly change medical facilities any time I choose, but I suppose I'll just continue to "dance with the one that brung me." I have had so many tests and am finally about to begin treatment, so I need to suck it up and get on with it. My sweet husband has driven me to every single appointment, most days sitting in the car for hours on end since he's not allowed inside. On days that I know I will be there for most of the day, he drops me off at the door and goes home. Then he returns at the approximate time I should be done. He is my rock and I don't know what I would do without him.
Okay glad to know he can least be there with you on the drive. P.S. i am glad you skipping the trail thing.
I think that it is good that you can talk with your doctors and know just exactly what is happening with your body at this time, and what treatment options are possible, and which ones will help you the most , and why. When I had my first heart procedure, I was totally terrified, and my cardiologist took the time to explain to me exactly why it would help for them to do the procedure, and what were the chances of me living and dying, and also how long I would live if i didn’t have the operation. I think that we need to feel like we are doing the very best thing for our body, before we make those decisions, and then we can at least feel like we are making the right choice, and knowing that we had a choice. After the heart procedures, they explained that as my heart failure progressed, I would probably need another procedure, and eventually , the pacemaker. So, when that time came, I was expecting it at some point, and not nearly as traumatized as I would have been otherwise. I have learned that not everyone feels this need to know. I have two good friends, both of whom will take any medication, or have any procedure that the doctor says they need, and they never question anything, or want to know what it does for them. You can ask why they are taking some medication, and they just say that the doctor said to take it, and they have no clue what it even does. So, whatever works for each person, I guess.
I agree, @Yvonne Smith . I think many people would prefer to remain in the dark and leave treatment to their doctors. When I first met with my treatment "team," (medical oncologist, surgical oncologist, radiation oncologist) they seemed surprised by some of my questions. One of them said, "you ask some very good questions." (And for the money they make, I expect some "very good answers." I can't handle any patronizing.) One thing that seriously annoys me about cancer treatment is this: the older a woman gets, the greater her chances of having breast cancer. Yet all the studies and most of the trials, etc. are geared to treatment of women much younger. Leaves one feeling expendable in the grand scheme.
On the advantages of MD Anderson or other top-rated cancer treatment centers, it may well be that, for the type of cancer you have, the standard treatment protocol is the best way to treat it, which might mean that you are gaining no advantage from MD Anderson over that of a lesser-rated treatment center. However, MD Anderson would have capabilities beyond that found in some other facilities. As an example, when I was diagnosed with prostate cancer, I was treated at a cancer treatment center run by Eastern Maine Medical Center, which is the largest hospital group in Maine but nothing special, on a nationwide basis. Of the treatment options that were available for my cancer, only three of them were available from EMMC. If I wanted to avail myself of some of the other options, I'd have to go to Boston, to MD Anderson in Texas, or one of only a few others in the country. When I chose to be treated by radiation only, rather than any of the surgical options, I was cautioned that if I chose to be treated only with radiation, and my prostate cancer came back, they wouldn't be able to do the surgical options at EMMC. Back to your cancer, as I said, it may well be that you will be receiving the same treatment you'd have gotten elsewhere, but I think it's fair to say that the level of expertise is considerably higher, which may or may not be an advantage. Unless they've changed considerably, the bedside manner is sure to be better than I experienced at EMMC, where they were downright rude.
To date, I haven't experienced any bedside manner; just a bunch of consultations and procedures done by technicians (except for the port surgery and the gynecological exam). For the most part, medical personnel are polite but detached. As with most things in life, we learn as we go. I'm new to this cancer thing so my first impulse was to head for what I understood to be the "premier" in cancer care. I'm hoping to look back on all of this in a year and wonder what the big deal was. I was just reading your cancer thread, Ken. One thing that struck me is that the story is the same no matter what type of cancer. Once a person has had cancer, they never stop being afraid. Someone said, "being treated for cancer is like having a mafia hit put out on you. You may get away the first time but you are forever looking over your shoulder."
Had I been able to afford it, I would have done the same. I still would. I hate the use of the word remission to refer to the aftermath of cancer treatment. I prefer to understand that I might get cancer again than to believe that it's been there all along, waiting to attack.
I hope you never have to go through that again, ever. There is no cure for cancer, so the best we can hope for is remission or the new-to-me term, "NED." (No Evidence of Disease after treatment.) Like most cancer patients, I am hoping for more years to live, but I dread the treatment. I am ever hopeful that it won't be as bad as I imagine.