There's an article in the today's (Sunday) New York Times "Cancer Patients, Lost in a Maze of Uneven Care" that hit home to me. It lays out the difficulty for patients in finding the right doctors and the correct treatment when you have cancer.
The article highlights some consensus statements on general principles of cancer treatment by the National Comprehensive Center Network. This information is useful to get your feet wet on learning about cancer treatment and can be found here. Several specialists at super-tertiary cancer programs comment on the "shocking" lack of standardized care in many instances in how common cancers are treated. Implicit in some of these statements is the notion that you have to go to some super-duper place like Memorial Sloan-Kettering (MSK) in NYC or MD-Anderson in Houston,TX for cancer treatment.
This is an absolutely ridiculous idea to me in most instances, except for certain surgical procedures which are only done commonly by a handful of super tertiary specialists. Post-operative morbidity & mortality for some of these procedures seems to directly correlate with volume, and volume tends to accumulate in small numbers of hands. However, I work commonly with community surgeons (a number of whom trained at places like MSK) who do higher numbers of these cases then the local super sized University-based teaching hospital.
Cancers of the liver, stomach, esophagus, pancreas, brain, and advanced head and neck tumors are the ones where I think you may be better off finding one of these specialists. For breast or colon cancer it's asinine to suggest you get better surgical treatment. For chemotherapy or radiation therapy the same "cookbook" for standard treatment exists whether you're in Manhattan or Mobile,AL and you shouldn't need to travel for it. Certain investigational trials (which again aren't standard and weren't the focus of the NYT article, may require you to go to regional cancer centers)
There's a patient in the article with aggressive stage IV colon cancer with liver spread who was (appropriately I think) counseled on the futility of extra aggressive chemotherapy and suggested a palliative regimen. She's used as an example of "under treatment" when she visits a referral center in Seattle that later used more then twenty cycles of chemotherapy to likely extend her life by less then a year and subsequently went to Johns Hopkins in Baltimore for what sounds like an ill-advised radical liver resection. Ironically my little brother is actually an oncology fellow at Johns Hopkins.
Even more ironic, is that last week I authored a section about surgical treatment of liver metastasis in the colon cancer entry on Wikipedia. Small world, eh?
No mention is made of exactly how gruelling this kind of therapy is, nor is there any perspective of the costs of treatment to the system. This was over $400,000 of dollars more expensive then what was recommended by her first oncologist. In an aside to the debate over "Sicko" and government health systems, you can bet that this treatment would not be subsidized by universal health care systems in most of the rest of the world.
As part of the food-chain of the oncology system, most often for breast and skin cancer, I see this all the time. One of the frustrations of breast reconstruction is trying to read the tea leaves about what kind of chemotherapy, radiation, and mastectomy a patient will receive. Variations in any of these can dramatically affect the quality of reconstruction, which is more of a tertiary concern from an oncology perspective but is often the most important from the patients perspective.
I'm just a "dumb skin doctor" these days but in scanning the NCCN recommendations on breast cancer treatment, I found a number of statements I thought either wrong, misleading, or at least up for debate. In particular they seem to be rather eager to irradiate people (for little or no benefit) and still wedded to the idea of "lumpectomy for all". When younger women, whom generally have aggressive tumor characteristics, are made to understand that (at approaching two decades follow up) between 15-19% of people treated with lumpectomy and radiation may have local recurrence of their invasive breast cancer, the rationale and enthusiasm for breast conservation diminishes sharply.
Plastic surgeons are particularly tuned in to the problems of radiation as we inherit them for reconstruction. By and large, if you considering a lumpectomy with radiation, you do not want to ask a Plastic Surgeon's opinion of it as we disproportionately see the complications. That's a post for another day.
Rob
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8 comments:
As a breast cancer survivor I couldn't agree with you more. So many women choose lumpectomy automatically, but often doctors don't explain to them that the recurrance rate is much higher than with a mastectomy. Mostly women are simply assured that the survival rate is the same with no mention of recurrance rates. As you said, younger women with breast cancer are more suceptible to recurrance due to the typically aggressive nature of their tumors, which means that down the road a mastectomy will probably be done if the cancer returns. Then, as you said, you run into the problem of trying to do reconstruction to a woman whose skin has been damaged by radiation.
Thankfully I took the time to educate myself about the pros and cons of lumpectomy vs. mastectomy prior to making my decision to do mastectomy. As you said, once I realize the recurrance rate was higher with lumpectomy it was a no-brainer for me to choose mastectomy. Fortunately I had excellent doctors that supported my decision, were honest with their answers to my questions, and didn't try to push me toward one direction or the other. I wish all women were so lucky.
BTW, I enjoy your blog and have learned a lot. Thanks for taking the time to write.
Susan Metters
Thanks Susan!
It's not that I don't think breast conservation is a good thing in principal, but it's just that the notion that it serves all comers better then mastectomy is wrong.
Knowing what I know from my experience treating breast cancer, I'd be hard pressed to reccomend that my wife undergo lumpectomy and XRT for invasive breast cancer. I think you'd find a lot of Plastic Surgeons with similar bias.
Thanks for an interesting post.
What do you think about prophylactic mastectomy's? Is there a patient population for which they are better or worse suited?
It's a very tough question for us young BC patients with no family history. I wish I were BRCA positive so that it were an easier decision!
Clearly BRCA patients are often suggested prophylactic mastectomy.
It's kind of intuitive to me that younger patients (20-40ish)would be better off doing it as well. It can reduce your risk of cancer in the other breast something like 90-95%+. When younger women develop cancer, many of those are biologically more aggressive and frequently are estrogen (ER)/progesterone (PR) receptor negative (which eliminates the effectiveness of estrogen blockers in reducing recurrence like the drugs tamoxifen, arimidex, or femara)
If you're approaching menopause with stage 1 or 2a disease and you're ER/PR+, prophylactic surgery may be swatting a fly with a hammer.
Like I referred to in the post, I and many plastic surgeons do not understand the push for breast conservation (except for somone with the smallest, most-favorable tumors). It obligates you to recieve radiation and causes fairly frequent cosmetic distortion. It also leaves you with expected local recurrence rates apparently approaching 20% in some women. I do not think most people want to accept that "pschyic baggage" when you explain that to them.
Me again. Thanks for the explaination. I wish that some of these facts were more clearly spelled out to me before my surgery. I would have opted for a bilateral had I known that the cosmetic results would have been better, and that I had a 30% lifetime risk of a secondary cancer in the contrilateral breast.
So here I am, one year out of surgery, trying to decide whether to do a revision on my TRAM side to correct asymmetry, which would include a small implant on my remaining breast (TRAM side is larger and lower), or to do a more extensive surgery (probably a DIEP or SGAP) at UCLA, which would certainly reduce risk, but which carries no guarantee of good cosmetic result.
I had neg lymph nodes, but two large IDC tumors in different quadrants and random scattered ILC scattered around for good measures. Basically a boob gone bad.
So, how can I possibly decide which surgery to do? No doc I've spoken to has given me any advice other than "either surgery is reasonable." Can you offer any insights that might help me make up my mind?
Thanks for your great blog. It's really important for us patients to see how human doctors are behind the gowns.
You're kind of in an awkward position as you've already had a one-sided TRAM. Unless your particulars of your tumor were particularly nasty (ER/PR-, poorly differentiated, or possessing the Her2Neu oncogene), I'd probably suggest trying to match your existing breast to the TRAM with an implant for most patients I guess. That has it's own sets of trade-offs for looking for breast cancer though, as mammograms will be slightly impaired. It will also age differently as compared to your TRAM , although less so then when you have an implant reconstruction versus a normal brest on the other side.
If the though of long-term surveillence "anxiety" is going to make you uncomfortable, then mastectomy and a GAP (gluteal artery perforator) would most likely get you the best symmetry.
Dr. Oliver. Thanks for your response.
I realize that there will never be a "right" answer as to what's best in this situation, and that much of it really comes down to what I'm comfortable with. I guess that if I really knew that I'd get a good cosmetic result I'd do the mastectomy. But I'd be really upset if the flap failed.
For whatever it's worth, I'd be doing the surgery at UCLA, which has a lot of different "free flap" options.
My 3cm tumor was grade III (BM score 9/9) so poorly differentiated, 45% ER pos. The other tumor was grade II, 80% ER pos. So, a "mixed bag" of pathologies. Also, I was diagnosed at age 39, so hopefully many years of living to do.
I'm not that worried about post recon scans, as my insurance seems to be paying (so far) for yearly bilat MRIs, as I believe that mammogram didn't pick up much of my malignancy.
Thanks again for your comments. They are helpful.
Thank you!
Your tumor and age of onset are indeed a mixed bag. A 3cm tumor is more then a "minor" cancer and would make you a stage II or III depending upon your node status.
There is no "wrong" choice here and I believe you'd find very divergent opinions on the prophylactic mastectomy issue. You're kind of a 'tweener as far as risk assessment.
There are a number of cancer centers in your area for you to solicit opinions from like the John Wayne Cancer center, UCLA, and others.
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