Life does not end with a stage IV diagnosis (really!)
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Wendy,
I apologize in advance, as I am not familiar with the particulars of your situation. I'm also not trying to defend your doctors. However, sometimes, in certain circumstances, "less" may be perfectly good tx. My RO and mo have a firm belief that I will continue to do well. They do believe my disease warrants tx, but they don't believe that bringing out the big guns was right for me. I have never had chemo. I have only had rads to my bone met, 16 Aredia tx and have been on an AI for over 4 years. Initially, I was scanned every 3 months, now every 6 months. I have been NED since the rads. I'm fine with minimal tx, if it keeps things at bay but will not hesitate to use the big guns when needed. I have always believed that less is more (except when it comes to dark chocolate, travel and reading 😉).
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Wendy - I understand how you feel. I felt that way with my original MO, who had me written off from day one. If he was correct, I'd have been dead over a year ago; I've definitely gone past my "use by" date. However, my new MO, who is a fighter, only gives me scans when I ask for them (due to new pain or symptoms). So, as Caryn says, sometimes less is more. I'm NED for three years (almost) on just Femara. Everything else I take is for side effects and arthritis. That said, my GP has pretty well written me off and won't be at all proactive. I'm hoping to find a better one after we move as I currently have to beg for any treatment I receive.
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Yay Terre! Great news
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I've dumped two oncologists because of their pessimistic attitudes. The first acted as if I should be checking out hospice right away. I realize that stage IV from the start with lung mets doesn't have the greatest prognosis, but he didn't even wait to see how I responded to treatment. Onc #2 was great and I was sorry to leave her behind in Texas, but we always intended to retire to New York and I'm thrilled to be back home. Onc #3 was a replay of #1 and when he told me that it wasn't worth checking out my 2 cm thyroid nodule because, after all, I had metastatic breast cancer, I started looking again (it was benign). Onc #4 really seems to be on my side. At five years out I'm well past my sell-by date and now have a solitary bone met and some small liver mets to go with the stable lung mets, but she and I have already looked ahead to alternatives after xeloda, my third treatment, after 45 months on anastrozole and 4 (it never really worked) on faslodex.
I realize (intellectually anyhow) that the time will come to stop treatment, but I'm not there yet. It helps a lot to have support from my doctor, but I'd really hate to think a bureaucrat could put a lid on my life.
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That is a great article and hope this discussion becomes a huge movement. I very definitely feel the "stigma" of people assuming that I lived a life less than "healthy' by being diagnosed Stage IV right out of the box. That is so far from true and how do we explain the people running around living lives of debauchery and not diagnosed? I find it chilling and appalling that any bureaucratic entity would deem us not worthy to continue treatment for as long as it keeps us alive.
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It's funny that Wendy & I are both from the same province as the professor, although different Health Authorities and I feel that I am getting treated amazingly. I am able to speak to both of my onc's candidly about any problems & within a couple of days I have a scan appt or change in meds or rads booked. My port insertion was booked within 2 days of request & performed within a week. I complained about a pain in my shoulder & was immediately sent to xray to check it out. But I agree with Caryn that sometimes less is more. Because we don't know your diagnosis & treatment, it's hard to make a judgment as to whether you should have more options or not. There are many days Wendy that I would gladly trade you my more for your less!!
I have never been told that I wasn't worth treatment, as a matter of fact it was explained to me that we have lots of options. I think it's great that there is more interest being taken in MBC, Thanks Terre for posting the article. Cheers, Dee
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Carpe_diem - you sure didn't seem past your use by date when I saw you here in NZ! You look amazing! So glad things are stable for you again. I still have something I want to send you; just need to get it done!
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GG27, My Onc has been great about explaining my options and is very good about answering my questions. I think carpe and I are more worried about the future, that insurance companies will slowly decide to start withdrawing treatment when they feel someone has used enough benefits.
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artist - I think those of us using socialised medicine/public health systems have the same worries. They keep raising the standards/pain thresholds you have to meet for treatment. My left knee is bone on bone, but even without cancer, I would need to have been in a wheelchair for several years before they'd consider me for knee replacement surgery. With cancer, I have no hope of ever getting one unless I pay for it myself. They seem to be less inclined to give expensive treatment to older people here in NZ.
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dang, I hate when I've just typed a post and lose it because I go back to see what someone else has said.
Just typed that DH and I filled out forms for his company's new insurance company and find that we have to reapply for life insurance (other than the minimal policy the company provides for us). Since he's had heart issues and I have stage IV, and we are older, I doubt if we get approval for additional life insurance. Irks me. We've paid for life insurance all these years and thought we were safe because it was a group plan. Now, new group plan, new requirements, and they want medical background. Just another way the insurance company makes $ off you for years and the the rules get changes.
Kiwi, it's a travesty that you can't have surgery that would improve your quality of life greatly!
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Suersis, While I totally understand your point of view and agree that resources are becoming more finite, I just don't think there is a reliable formula for someone to decide who the people are who need to be cut off from treatment so that "younger" people can benefit. There are far too many variables in each persons circumstances to make that judgement. I also appreciate your generosity and good spirit in the belief that the world is for the young, but I respectfully disagree. I guess I am a lot more selfish......Yes, the up and coming should be given every opportunity in life, equal to everyone else, including the medical care they need. However, people in older age groups have worked, sacrificed and tried to do the right things to live a long and (hopefully) healthy life. I may in the over 50 age group but consider myself energetic, fit (besides the bc......) and still a very vital contributing member to society. I have worked very hard over many years to earn my great benefits, I should be able to utilize them for my health now. My life is no more or less important than a younger persons. Nor is my desire to survive and I am sure many women it their 70's or beyond feel the same. Again, I do appreciate your point of view.
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I don't think that a scarcity mindset is really necessary for breast cancer care, at least in the US, where I live, I do not believe that someone else won't be able to receive treatment because I get it. There is enough for us all.
For me, focusing on the abundance in the world is helpful not just in treatment of this illness but for many other challenges as well.
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KiwiCatMom,
The best gift you could give me was meeting you in Wellington! DH and I have such wonderful memories of that trip and your delightful city. I just wish I could walk as freely as I did then - this Hand Foot Syndrome is the pits, but I can put up with it if the Xeloda will just keep everything under control.
Here's hoping we both improve our mobility issues - as if mbc isn't enough to deal with!
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Carpe_diem - I stil have my wonderful mouse on my desk and I think of you every time I come into the office. It may end up going home with me once we move into our new house as the people we're buying from are leaving some display cabinets with glass on the front so the cats can't get to things.
I was so thrilled you and your DH chose to spend some time with me!I agree that we should get a pass on mobility stuff, along with colds, flu, UTIs, etc.
Hugs and love,
Terre
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Well said Viceroy, that is a very great attitude, thank you!
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suersis, I completely respect your point of view and agree it is probably the most personal decision you will ever make. I also agree that there is inequity when it comes to healthcare in the US. I just become very nervous and offended to think that a certain part of the population, especially health care providers, may think that age or possible prognosis should dictate the level of care one might receive. Sounds like a very slippery slope to start down.
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As an American living in New Zealand, I can assure you that in countries with free public health care, decisions are made based on age, likely outcomes, expense of treatment, etc, due to finite resources. Not ideal but it is the system here. The good news is that people here are incredibly generous and use crowd funding for overseas treatment.
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I in no way think that there is equality in our healthcare system, there are so many issues with it.
I have personally been working to have more of an abundance mindset and was trying to share that.
This site has a description of what I mean - http://www.thesimpledollar.com/from-the-scarcity-mindset-to-the-abundance-mindset/
"The Abundance Mentality, on the other hand, flows out of a deep inner sense of personal worth and security. It is the paradigm that there is plenty out there and enough to spare for everybody. It results in sharing of prestige, of recognition, of profits, of decision making. It opens possibilities, options, alternatives, and creativity."
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I totally agree with the abundance mindset, Viceroy and it's a great one to have. Didn't mean to imply otherwise with my post. I always try to acknowledge that there is more than enough to go around. Sadly, the health care systems in so many countries don't share that view.
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An abundant mindset is great and I appreciate the link you provided, Viceroy. Years ago I bought a book called The Divine Laws of Prosperity and it was transformative for me. It outlined how prosperity and abundance may consist of money but also extends to health and having family and friends who care, ect. I should pull the book out and look up exactly what it said about abundance because it was very comprehensive and well written.
It's not easy for everyone to keep an open mind to prosperity. We have a good income but it's been tested by medical expenses and helping a son go thru college and now focusing on retirement. I never made very much money working, my husband being the main breadwinner. And I tried and always wished I could make a lot of money but I never did. It's been frustrating.
So all this is to say what you hope for and what actually happens do not always end up the same. And while we may practice abundant lifestyle and mindset, we deal with others who don't view life that way. There's also greedy people and businesses who want more for themselves and don't and won't cut slack for "the little man". Hospitals are businesses and they are concerned about the bottom line. The longer I live, the more I'm aware of how many decisions are money-based in health care, the education system, government, ect.0 -
Are you an engineer Suems? I am so I love that quote!
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Divine, you got that right. We all have a different idea of how things should go in life and as we age we sometimes have to adjust our expectations a lot...It can be extremely frustrating. disappointing and just plain scary to see just how money centered all of these entities are. (I work for a school district, believe me I know!) Good one suersis!
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LOL@Suersis. I'm a civil/environmental engineer. Or, as I call myself, an uncivil engineer.
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I was a school aide, so I saw how money affected the decision making, too, in many ways. Those in town who have money have more clout, the dentist, the funeral director, a bigwig at the power plant, the mayor, the county commissioner. Their ideas and directions are given priority as well as their family members given jobs. Also, money would be found for what the district wanted, like sports stadium upgrades and create a new position so the vice superintendent can have a secretary yet they'll cut other employees' positions leaving more work for the rest to pick up the slack. The board of education would have a get together with shrimp dinners and expensive desserts. Yet they could never find enough money for books until years of complaining from parents made them finally address the issue. And this is just one tiny school district; I know it happens everywhere.
I also think about people like Bernie Maddoff who orchestrated the biggest Ponzi scheme ever and also the Enron implosion that left so many people who worked for the company destitute. Those situations might not happen as frequently, thank goodness, but it shows the greed that is out there. And one of my biggest pet peeves, people who work for volunteer organizations and steal money from it. A lot of that happening, too. Now I'm getting off topic.....sorry......
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divine,
Wow, that sounds like a very corrupt school district. Both citizen and legal oversight would make those kind of actions quite impossible in my district ( or county and probably state). Money is still a driving factor, but since are money comes from the state it's quite regulated. Even money raised by parents or donated, cannot be spent based on the wishes of those who donated it. Hiring? Again, too much oversight to result in unfair hiring practices.
What a shame that the students were the ones who lost the most due to adult greed.
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Corrupt, definitely. Its hard to go into detail without hijacking this thread. In short, in a town of 5,000, those in power make up rules and bend others to get their way. All the time. Anyone not originally from here (like me) is never quite a part of the town. That's why I see the corruption; townies look the other way out of loyalty, laziness and denial. I have to say, tho, my son, who went to high school in a different city than where we live, was friends with a terrific gal,whose father was superintendent of a completely different and somewhat prestigious school district elsewhere in Ohio, and she told my son "My dad's school district is rife with scandal!" So I know it goes on in other places.
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Not meaning to interrupt the topic or flow, but..life does not end at Stage IV. We own a house! Just got the call from the lawyers and we pick up the keys in 90 minutes!!!!! After 7 years of renting in NZ, this is huge for us. And probably a bit of madness. Now, just have to pay the mortgage down so if I kark it, hubby can keep the house and the kitties.
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Congrats, KiwiCatMom! Glad you and your kitties (and your hubby) have a new home!
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Thanks Scrunch!
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BIg smiles & huge congrats to you & hubby, Terre! And we certainly hope you don't kark it, LOL, anytime soon!
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