2018–2019 – Choosing Our Future – Medium

I haven’t been writing on Medium much for the past few months. I check in once in a while to see what’s going on. Enough people seem to be tracking the international dysphoria with enough angst and accuracy that I don’t feel the need to add to the obvious. There are still enough trolls making comments, many of whom are probably bots, as their comments are repetitive and almost identical. Others are still writing about how to improve your personal “brand,” a trend that makes me worried about our economic future.

My last post about the progress of my cancer treatment was on October 11, 2018, a couple of weeks after my first surgery. What was discovered at that surgery that changed everything I had been led to believe about my treatment. The most upsetting thing at the time was how surprising it seemed to everyone. Now it is the surprises that are constant.

When i was first diagnosed with breast cancer, it came after a few years of having several doctors minimize or completely miss an obvious indication that something could be happening. I had an inverted left nipple that one doctor saw but couldn’t feel anything behind it so he decided to just “watch it.” He promptly retired, and none of several other doctors and medical people who saw that symptom paid any attention to it for about four years. I am currently talking to the people at that large, well regarded medical network about why that happened and what they will do about it, both for me, and to prevent this from happening to others. It will be a fascinating process.

But what I have learned from my adventures in Cancer Land is that a lot of it seems to be marketing, and a lot of the marketing is to get everyone to have a positive attitude, and be a believer. Most people seem willing to buy in. There’s a lot of pressure to keep smiling.

The results of the pathology report from the mastectomy made it clear that the original treatment plan was not as successful as expected. This despite the fact that the plan was rousingly approved by several doctors, first, second and third opinions, unanimously. What everyone had expected that I would be on Tamoxifen for a few months, it would shrink the tumors, I would have a mastectomy, and go back on Tamoxifen for a while. They all also checked my nodes several times and were reassuring that they didn’t seem infected.

Well, they were wrong. The Tamoxifen did shrink the tumor, but there were some, very small, but still some cancer cells in the nodes. That meant that the treatment plan was less than successful. It was then that I moved my treatment “across the street” to one of the world’s most respected cancer treatment centers, and to a doctor who was well known and well respected by several friends and family.

At the Cancer Center they were very reassuring that the spread was minimal, and they also gave my original tumor a genetic test to see if chemotherapy would be helpful and the test showed probably not. No worries, an easier path.

The Cancer Center is very cutting edge, and they all work together in large teams of several oncological specialists. After what was described as a long team meeting, it was decided that my case was still a bit too risky to just back away from and go to radiation. First they decided a second surgery would be helpful to look at the next level of nodes. A simple surgery.

Except it was simple and routine for them. The way they described it they would just take out 5 to 20 pea sized nodes. What they didn’t explain until four minutes before the surgery was that the small nodes are contained in a ball of fat and tissue that is the size of an orange. But, no worries, I probably wouldn’t get much swelling, and the drain they would put in me would let almost all the lymph fluid drip out in a week or so. Kind of gross but manageable.

Except that didn’t quite happen that way. I had considerable swelling and after ten days the drain was still pouring out fluid at four times the expected rate. They had to take out the drain before I got infected. The swelling is still here, although now, three months later, it has finally begun to diminish.

Good news! they told me. Only two of the twenty nodes were infected. All the other scans that searched for any spread of cancer cells are clear. No sign of metastasis anywhere. Thankfully, that is still true. However, just to be sure, my doctor, after consulting with all of her colleagues, went to her fancy bag of medical interventions, the kind of interventions that only a cutting edge world famous cancer center has access to and knowledge about, the kind of individualized, personalized, high tech, deep learning evidence based, most effective medical treatments, available anywhere. From this bag of medical options she pulled out a sledge hammer. It’s called “The Standard of Care.” It means this is what we do when we’re not sure what’s going on.

“Just to be sure” why don’t we do four rounds of chemotherapy, using the same kinds of chemicals that everyone has been giving to women with breast cancer for thirty years. They explained they are doing this only to prevent a reoccurrence of this cancer in years to come. I have no signs of cancer now, but there could be some microscopic cells in me somewhere that are undetectable. The chemo might be able to kill them. They are not sure if those cells are there. They are also not sure that the kind of cells that I have would be killed by this kind of chemo, but it all seemed worth a try. It could increase my chances of avoiding a reoccurrence by about 5%, maybe. And anyway, it would only be about ten weeks of on and off misery.

Wrong again. After two of the planned four rounds of chemo therapy the things that were being killed in my body may or may not be some microscopic solitary cancer cells, there is really no way to tell. However, the chemo was killing things that important to my staying alive, such as my lungs. Again, this was a surprise to everyone. We very rarely see this with this medicine, they told me. And that is probably true. That’s why when I developed a random cough in the first round, no one made much of it, since it had stopped before the second round. But after the second round I couldn’t stop coughing and I had trouble walking up stairs. So right before the third round of chemo, as I kept complaining, they sent me for a C-T scan and found that my lungs were becoming compromised and were being damaged by the treatments.

The trouble is that all of the breast cancer treatment profiles for the kind of cancer tumor I had are based upon tens of thousands of fifty-eight year-old, post-menopausal women. They extrapolate that data to men, and it usually works. But it doesn’t for me.

My stance at this time is that I still feel very confident that after getting radiation to the right spots, my chances of living cancer free for the next ten years is at about 75%. There will still be things I can do to improve on that but I’m going to have to be much more knowledgeable, selective and assertive about my treatment. I want to see the studies of the different options, and I want to know if there is data on men my age. I want to know what other options, some less traditional, can legitimately be considered. I don’t know if main-stream medicine will go there.

There is so much information and misinformation available about cancer out there. There are so many miracle cures that worked for two people but were quirks or outright scams. Even the motto of the Cancer Center is “Research, Hope, Believe,” when it should be “Research, Treatment, Cure!” And there are several newer and effective individualized, targeted treatments, some of them are working, but not for my kind of cancer.

American medicine is based on a treat the sick model, and the way to treat them is with drugs and more drugs. It is clear that all the drugs have strong side-effects, so those effects get treated with more drugs. That is what’s happening to me. I may even need some drug to treat the side effects of the drug I am being given to treat the damage to my lungs, as that drug could affect my vision.

The next steps are to take the drugs to clear up the problem the chemo caused. After that I will spend time focusing on healing, with diet and exercise and maybe other ways to boost my immune system. Then I will get some radiation beamed at a few spots where some microscopic cells may be hidden. That seems pretty straight forward, but who knows. They have to be careful to guard my lungs and heart.

After that I will decide, with the help of my doctor, her entire team, my family, and my own research, and my internal physical feelings about how to proceed to best keep myself alive. I am also trying to consider the quality of that life, which something that seems to be secondary to those who focus on driving the cancer cells away.

I also want to make it clear how fortunate I am to be who I am, and where I am at this time. I am about to be 74. I am living within a half hour, in traffic, to one of the most highly regarded cancer treatment centers in the world. I am covered by a Medicare Advantage Plan that quickly approved my treatment at this center. My costs will be in the hundreds of dollars while my government will be paying tens to hundreds of thousands of dollars to keep me alive. Everyone should have this kind of care. And everyone could if they had to enroll at twenty-five. But that has always been a controversial matter for a country where the rich can live and the poor can die. That’s another long, complex discussion

But, even with all of these advantages I have become much more skeptical about just following along. I think my treatment team is finally realizing that I am a black swan, a zebra, a unicorn. I am very sensitive to medicines that other people tolerate. Everyone is different, they often say. Now I have to play a larger part in figuring out how different I am, and I think I have their attention.

One of the often repeated phrases is, this is all part of “the journey.” There has to be hope. You have to believe. I have come to believe that data > opinion. But read and understand the data carefully. There are many fantastic new developments in medicine every month, many of them in cancer treatment because it attracts so much money. Everyone knows someone with cancer. But, just as it was when the Human Genome Project was completed and the expectations were that so much about how our bodies work would be revealed. Mostly, what was discovered is that everything is much more complex than we hoped. That is certainly true with most of the new developments now. The average time is seventeen years between discovery and delivery. I hope I’m around to benefit. That’s the hope.

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Thanks !

Thanks for sharing this, you are awesome !

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