A few times on this blog I’ve mentioned that I live in a rural beach resort area, about 2 hours away from places like D.C., Philly, or Baltimore–home to John Hopkins. I live in a small town—think that old TV show about Sherriff Andy Taylor and Barney Fife—yes, sometimes it is like Mayberry here. While I like that, it can be a little limiting when it comes to health care. Rural areas, with their poor financial compensation offers, do not attract many doctors, and breakthroughs in treatment, cures, discoveries, etc., will not happen here. Hell, you could say that we have a severe shortage in health care options, especially since so many folks retire here and with an aging population health issues increase. In short, health care is a different animal in a place like this. I read so many blogs written by patients who went to Dana-Farber, Sloan Kettering, or whatever—and that just is soooo far from my reality.
Before I got cancer, I did not really care very much about that sort of thing—in fact, I would staunchly say that everything, including medical care, was just as good here as anywhere. After my false negative—which was due to human error, not a case of technology not producing an image of a tumor—and after hearing many other stories of misdiagnosis from clients—I began to think that health care is best done elsewhere. But schlepping “over the bridge” (the Chesapeake Bay Bridge, sometimes there is a whole “thing” about which side of it one hails from, as in, those of us on the east, Delmarva, side are just dumb hicks) is not feasible for me, financially or in terms of time to spare, etc.
I am now changing my mind again and thinking OK, maybe diagnostic abilities here are not the best, but treatment is better than I thought.
Not long after completing treatment, I attended a small-time local conference about breast cancer. A doctor gave a presentation and at the end, as almost a footnote, said that more doctors and patients should consider the unusual timeline of chemo first, then proceeding to surgery, upon a breast cancer diagnosis. I remember kind of going “hmmm, that’s funny” as she walked off the stage.
You see, I was told emphatically by the breast surgeon who diagnosed my cancer, and then the oncologist who treated me, that shrinking the tumor with chemotherapy first, and then having surgery and radiation was the best plan. It was of course, my choice, but they stridently urged this course of action, despite my not uncommon desire to “cut that THING out of me as soon as possible!!!” I heeded their advice. It worked wonderfully; there was only a small in situ piece left in the nipple (the devil that started it all) after chemo. That is down from a 6.6 cm tumor that was taking up most of the space in my small breast. Not only did the chemo first approach work for me, it was also implemented for my aunt, diagnosed just a couple months prior to my own diagnosis. My own experience and the experience of a relative closest to me had this “chemo first” plan, so I did not view it as unusual or new (remember, this is back in 2010).
It did not occur to me that surgery first was the most common path. At least not until I started reading blogs and reading how many women seemed to have surgery first. But reading the latest “Cure” magazine interview with Joan Lunden has finally made me go: OK, what the heck?!
Note—yes, there are many things I could be cranky about in terms of Lunden/all celebrity cancer stories, but I’m going to limit my discussion to this one item for now, for this post.
In the article, which I’m sure everyone has read, her decisions about treatment were under the section called “Trying Something New”. Unless I really read that section wrong, it implied that the chemo first regimen is kind of unusual:
“… there is still resistance to deviating from the longstanding dogma of surgery, then chemo, then radiation. The benefits of pre-surgical chemotherapy, particularly in the type of breast cancer Joan Lunden had, are abundantly clear.” – See more at: http://www.curetoday.com/publications/cure/2015/winter2015/a-two-way-street-joan-lunden-shares-her-cancer-experience/2#sthash.fQlogQBD.dpuf
When the doctors presented the idea of chemo first to me, they did not do so with any indication that this was a new or uncommon path, or even a deviation from the norm. They merely said that my tumor was so large, surgery at that time would be disfiguring. Chemo would hopefully shrink it to a manageable size. It did not sound like some new-fangled, cutting edge, wowee-zowee idea. No, to me, it sounded like good ol’ country common sense. Glad the doctors I encountered in my Podunk region deviated from the dogma! I was able to have a simple lumpectomy, and while I’m not happy about the removal of my nipple, I recognize my situation could’ve been so much worse—that I am more fortunate than most.
I have grumbled, and will again I’m sure, about the impacts of having cancer in a rural area, but I’m glad to know in this one aspect at least, my care was not so “Mayberry”—even if I did not realize how new-fangled my experience was at the time!
I am still trying to wrap my head around this concept. It seems strange to me that the treatment that I experienced almost five years ago is considered new and is being discussed as such by a celebrity. I’m not sure what I think about it. I’m just glad my oncologist was smart, informed, and open-minded enough to embrace it.
anotheronewiththecancer 
Thank you for posting this CC. Like you I live in a rural area and though we have the NHS, rural areas don’t tend to attract “top Drs” – the ones who are going to appear on TV someday. I didn’t get the chemo before surgery option but I did get a third generation chemo regime – something new and different from plenty of other women I know. That happened because my oncologist is a damned fine scientist and continues to do a lot of research despite being in the sticks. He knew it was the best way to go with this particular cancer and from everything I’ve read since, he’s right.
I can really see the sense in chemo first when dealing with aggressive cancers that are inclined to spread. Not only does it shrink the tumour and reduce the likelihood of a significant surgery, it also takes care of micro-metastases. Those things can be nigh on impossible to find, even with MRI etc. While I can’t say I enjoyed having chemo I’m glad I did. I opted for mastectomy because I wasn’t convinced lumpectomy would be enough – when the breast was removed there were three other areas of undetected cancer situated well away from the known tumour. I’ve always considered that surgery dealt with the things we could see (and a few we couldn’t) but chemo zapped anything else anywhere else that remained undiscovered. My cancer treatment here was so much better that I’d have received in one of our major cities so you’re right, Mayberry ain’t so bad at all.
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Thanks–so glad you understand and agree. And I am glad I had chemo first too, for all the reasons you mention. Weird that so many are resisting some of these “new” ideas isn’t it?
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I have often thought about how other hospitals treat cancer because I don’t want to live in NY forever. Now that I am dealing with cancer I am scared to leave Sloan, but truth is, we are still dealing with a formula that all places follow – some remove a digit or two and insert others but at the end of the day, most places do the same, at least for breast cancer (early stages). In terms of stage 4 I am annoyed because not all places offer the same trials (is that right?). This is my understanding. There may be a few major hospitals (MD Anderson, Mayo, Sloan..) that could initiate some kind of research or treatment but eventually everyone else follows.
Something happened to the mother of a friend. She was told she was terminal at Sloan. I mean, many people would just quit after hearing these words from one of the top cancer hospitals, right? But she didn’t give up. She went to a local Onco who had his own office. He tried “something different” with her, because there are those who don’t always follow protocols. And sometimes this can safe a person’s life. Well, my friend’s mom has been in remission for 7 years thanks to this Onco, who was not working for any of the “top cancer hospitals.” I don’t mean to expose my hospital in that way, Sloan is great, but I think it’s important for people to know that there are great Oncologists everywhere. And sometimes you just need to follow your instincts and trust your medical team.
About having chemo prior to surgery, I like that idea a lot. Especially after losing a family member to metastatic breast cancer because her Dr. decided to remove her breast before chemo, leaving her with cancer all over (this was about 7 years ago). Of course this happened in a developing country – a place where many people aren’t so lucky.
I had a lumpectomy before chemo, and needed a re-incision because there were cells left behind (in-situ, but still..). So I think starting chemo before treatment is not such a bad idea.
I am glad you had the chance of trying something “relatively new” that worked out in your favor, at the end.
One day I might end up moving and I will need to think about my options. I believe there are good Doctors everywhere.
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Yep, there ARE good doctors everywhere. I’m even wondering if my “new” treatment was really all that “new”. I’m thinking it is just different from the usual story that is re-told so many times in breast cancer narratives that it seems new or odd. I don’t give it a lot of thought most of the time, I’m merely glad I got what I got; but I will try to remember in the future that my process might seem odd to some folks who read my blog. I guess that is why I opted to post about it now after all this time.
I don’t know as much about trials, and hope I never have reason to learn.
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I have heard of many who had the chemo first, then the surgery. Doesn’t seem to be a “new” way of doing things to me. Just makes sense when a tumor is a large one. Hell yes, shrink that thing so the surgery may be less extensive. Jeez. And I may be (hopefully) be moving away from a big metro back to my home, ruralish, beach town & am sure I will find a most excellent medical team there. Thanks for this great read. xx
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It’s funny, I don’t usually pay much attention to the details of treatment when bloggers write about it unless it leaps out like this Lunden article, with so much emphasis on the “new” aspect. The whole thing was just strange to me. But, the good news in the example of what happened to me, is that yeah, moving back to a slow rural beach town won’t absolutely mean you have to give up access to “new” ideas. And that’s gotta be good, right? Beaches are best!! (Not that I’m biased, ha ha…)
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So interesting, because I had chemo first too, then surgery, then radiation. I live in a big city, but I get my care at a smaller hospital in my neighborhood that’s connected with a major cancer center. My onc is the type to think outside the box, possibly because he’s young and not yet set in his ways, but maybe also because he’s removed a bit from the main cancer center. It probably gives him a bit of freedom from outdated dogma, just as doctors in rural areas would have that freedom.
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Ha ha, I just figured rural doctors did not keep up with the latest “things”–and some do not, I fear. I know I was lucky, whew! Thanks for reading!
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