Update Feb. 11: I’ve decided to publish what I want to find in a provider: see this post.
Be sure too to read the substantial information contributed below in comments, some by e-patients and some by participatory providers. This process is interesting to observe!
An odd consequence of speaking at medical conferences is that sometimes my face is displayed, real big, on monitors at the front of a room. That happened in November at the Aligning Forces for Quality (AF4Q) annual meeting in Washington.
At the end, Lisa Letourneau MD, MPH of Maine Quality Counts raced up, pointed to my jaw, and said “You should have that checked. I think it’s a basal cell.” (That’s the least serious type of skin cancer – see Wikipedia: “Basal-cell carcinoma (BCC) is the most common type of skin cancer. It rarely metastasizes or kills.”) A few days later I took the picture at left, and started watching.
I had a basal cell removed from my nose 30+ years ago. (More on this in a moment.)
To me it was just a shaving cut… but, I realized, it wouldn’t heal. For the next two months I was a slug (a not-engaged patient!), but I did take pictures, and son of a gun it did not get better, even when I thought it was finally going away.
When I had my annual physical recently, I asked my doctor, and he looked and said, “Get a biopsy.” I did, this week, and today they called. Yup, it’s a basal cell. Thanks, Dr. L!
Remember how you’ve always heard that a warning sign is “a sore that won’t heal”? I guess they mean it. I kept kidding myself, thinking I was continuing to re-injure it shaving. (Not bright, I know.) Then, just before the physical, I ran across a summer photo, and there it was. So I guess it was there longer than I realized.
I’m going to blog this experience, as I try to practice what I preach: get engaged, learn what I can, explore my treatment options, connect with other patients.
They (dermatology at Beth Israel Deaconess) recommend Mohs surgery – a day-long outpatient procedure. This seems like a good idea, because the procedure 30 years ago involved moving a hefty skin flap from the adjacent cheek onto the nostril, even though the cancer itself was much smaller. (Photo, right.)
So here we go. My to-do list, practicing what I preach:
- Connect with a patient community (skin cancer patients), if I can find one. So far my own list of patient communities doesn’t have one. Anybody know of one? Update 10 a.m. Friday: I’ve fixed the Patient Communities link (thanks Trisha!) and now I do have several skin cancer patient communities to explore – thanks to you!
- Learn what I can about the disease: what is basal-cell carcinoma, anyway? What goes wrong in it? Starting now: the Wikipedia article. Next: ask my clinicians. (And, of course, a patient community when I find one!)
- Assess my treatment options.
- What are the other options, besides Mohs? (I’m definitely not interested in “do nothing and wait.”)
- I’d love to connect with patients who’ve had Mohs – or any other treatment.
- Presuming I go Mohs, what are my options for different providers?
- I have $10,000 deductible health insurance, so this will come out of my own pocket, and you can bet I’ll be asking around: “Hey doc! What’s my cost going to be? What-all will I be billed for, line by line? And what’s your outcomes data? Thanks! :-)”
- And yes, I will negotiate – like many Americans today, I pretty much have to. “Can you do any better on the price?” I won’t choose based on the cheapest bid (that can be suicidal), but price will definitely be a factor.
- “Bidders,” note: I’m willing to travel if I find a great clinic at a great price. If I can save $3,000 with $1,000 of travel costs, you bet I will! This is the glory of consumer mobility: as we fall out of the insurance system, we can go “out of network” as much as we want, because we’re on our own. At last.
- What are the other options, besides Mohs? (I’m definitely not interested in “do nothing and wait.”)
By the way: here’s to advances in medical science! Not only is Mohs reputedly less destructive to the face (yay!), but it’s outpatient. My surgery long ago required hospitalization.
And here’s to good doctors and patient-centered care, because the surgeon I had back then was a jerk. (This was one of the formative moments that led to my being an e-patient years later.) He got hostile when I asked if I’d have a scar (!), saying “I am a plastic surgeon.” If anyone ever acts that way with you, run: this guy never came to see me in the hospital – I had to discharge myself two days later.
Stay tuned.
p.s. No, this is not a dumb scheme to increase blog readership! I don’t sell ads. :-)
We do need to pay attention, don’t we? I’ve heard good things about Mohs. Will mos def stay tuned, and the most bestest of best wishes for an easy, and cost-effective, treatment protocol. Oh, and fast healing =)
I was diagnosed with basal cell on my nose. The mohs surgeon said that even using the mohs procedure that it would require the forehead flap surgery to reconstruct my nose. I opted for radiation therapy instead of mohs. I’m almost halfway through the 30 radiation treatments and praying that it cures it.
Gosh, good thing you’ve got the eyes of a bunch of top docs on you! Glad you are taking care of yourself and being a good example to all of us.
From Facebook: http://www.empowher.com/condition/basal-cell-carcinoma/community
Somebody on Twitter said: “Dave, check this out: http://ExposeTheCure.com.” I’m not sure at first glance, but it appears to be an idiot website that says cancer is a profit racket. Ahem.
I had MOHs in Israel this past Jul just before a trip to the US. My blessed national health paid all but $100.00 of it. I had to pay more than that to have the stitches removed in Florida by a nurse. And she left one stitch in! I removed it myself.
Great info, Dorothy! I wonder what it costs if I come to Israel to have it done!
Dave,
A small point you missed: empowered patients make and KEEP annual physical exams and follow-up visits with recommended specialists. That’s how we keep small conditions from getting bigger. So please cut yourself some slack for not calling a doctor the moment after the physician at the conference suggested you have the spot checked:) That fact is that you had an appointment coming up where you addressed the problem.
My experience with skin cancer comes from my husband, Steve, a three-time melanoma survivor. He’s been treated for melanoma at MD Anderson, where he was treated by Merrick Ross, MD and Steve Kronowitz, MD, plastic surgeon. There he also enrolled in a clinical trial for a melanoma vaccine. For melanoma I liked this site: http://www.melanoma.org/community/mpip-community-central and I also signed up for the melanoma list on ACOR. On Twitter there is @melanoma_mama and @dermdoc, who are talking about developing a skin cancer chat. We need one. Incidence of all skin cancers is rising.
Steve also had a basal cell carcinoma near his nose about five years ago. For this he was treated at a clinic in The Woodlands: http://www.twssc.org/. Until then I’d heard a number of Mohs horror stories; but my thought is that the procedure was done in the hands of inept physicians. His experience (and even mine, as caregiver) was terrific. I couldn’t tell you where on his face the cancer was at this point. His physician was Brent Shook, MD and he was referred by his regular dermatologist, Holly Clark, MD. One thing with skin cancers: it’s good to have more than one set of eyes on you. His skin is monitored by both Dr. Ross and Dr. Clark, in alternating three-month appointments.
Neither of us could recall the fees for the surgery. I also carry a high deductible so I understand checking out costs. The Woodlands is approx. 30 minutes north of the Houston airport so please let us know if you end up coming here. You’ll have everything you need in one place and you’d be in good hands:)
Contact Information
281.364.8844
Email: info@twssc.org
Let me know how else I might help.
Jody
Dave,
Of course, I cannot give you advice on your skin cancer.
I can say that the majority of basal cell carcinomas (BCCs) can be treated with electrodesiccation and curettage (ED&C).
ED&C is best done at the time of the initial biopsy so only one visit and one procedure is needed. ED&C has the advantage of being patient-centered (one visit) and cost-effective (often 1/10th the cost of a Mohs procedure for example).
ED&C has the disadvantage of lower efficacy (particularly for high risk such as sclerotic BCC or larger BCC in sensitive areas such as the nose and eyelids). Scars from ED&C can be similar, better, or worse than other procedures depending on the location, size, and skin type.
A Mohs procedure is a type of tissue-sparing excision that removes the BCC with evaluation of the margins. Mohs describes only the removal of the skin cancer. Closing the surgical wound is independent of Mohs and can be done by simple closure, a skin flap, or grafting. In some cases, closure is not needed; the wound will heal on its own. Mohs has the advantage of a high cure rate and often improved cosmetic outcome depending on the size, type, and location. It has the disadvantage of being time consuming (two, sometimes more, appointments are needed; appointments last hours) and being costly. Mohs is not indicated for most BCCs which are adequately treated with less costly, less invasive methods.
There are other procedures such as simple excision, lasers, photodynamic therapy, liquid nitrogen, and radiation, and medications such as topical 5-fluorouracil, imiquimod, and even a pill, vismodegib, that also effectively treat BCCs depending on the size, type, and location.
Basal cell carcinomas are the most common cancer in humans. We estimate that 2.5 to 3.5 million BCCs are diagnosed each year in the US making it about 10 x more common than other “common” cancers such as breast cancer. I wish you the best. Let me know if ever I can help.
Jeff
Jeff Benabio et al,
Some additional info: this is a 1cm nodular BCC. If I understand correctly, that’s large for a basal cell. I do know there was cancer at the margins of the biopsy.
An advisor said the size and location do suggest Mohs, because on the jaw line it would be hard with a plain excision to be sure you’ve gotten it all. Thoughts, anyone?
___
I really gotta get off my busy business butt and join those patient communities, too! The good news is, I’m busy. The bad news is, busy gets in the way of such research.
Yeah, it turns out doing this e-patient stuff takes time!
Here’s a note from a friend whose wife just got a BCC diagnosis – hers is superficial – about a medication Jeff mentioned:
“Imiquimod is FDA-approved only for superficial BCCs, with cure rates generally between 80 and 90 percent. The 5% cream is rubbed gently into the tumor five times a week for up to six weeks or longer. It is the first in a new class of drugs that work by stimulating the immune system.”
Boy! If I had a superficial one, I’d sure try that! But the biopsy slice that I had taken still showed cancer at the margins, so I guess it ain’t superficial.:)
Hi Dave! Inspire has a Skin Cancer group, here:
http://www.inspire.com/groups/skin-cancer/
I’m sorry about your cancer and will be reading your blog with interest (my family is prone to skin cancer; my sis and I both have had suspicious moles removed).
best wishes,
Laura
A new drug was just cleared by the FDA for Basal cells and I blogged it a few days ago. It is for those who can’t have surgery as I understand it; however with doctors having the ability to prescribe off label as they see fit, perhaps it could have use with being combined with surgery, but only the doctors can give you that answer, just a thought of mine, new drug from Roche/Genentech…more here…
http://ducknetweb.blogspot.com/2012/01/fda-approves-rochegenentech-drug.html
Thanks, Barbara!
The newly approved drug, Vismodegib, is not cheap…$7500 a month for 10 months of treatment. Out of pocket I’m guessing this isn’t feasible for a small <1cm lesion.
I am very sorry that you have to go through this again Dave. I will keep you in my thoughts and hope for the best.
Vismodegib is for inoperable or metastatic BCC tumors. It costs $7,500 a month. The average therapy is 10 months.
About 1/3 of all white people in the US will have a BCC in their lifetime, about 3.5 million each year.
Dave, no promises but since I am well connected with people who are well connected in dermatology I’ll put my feelers out for you. So far you are 2 and 0. This is bout three. You are the favored contender!
Thanks, @ClinicalPosters! (Folks, check out his e-patient posters – LOVE them.)
I have to say, though, that I want to approach this straight-up, no special privileges, because my whole goal in blogging this is to advance our shared knowledge of what the ordinary patient’s experience is like.
One friend wrote privately and asked how he could donate to a fund! I hope we won’t get to the point where that’s necessary, but jeeze, you guys are amazing.
First things first.
Dave,
You are the model e-patients and set a great example for all of us. Good luck with your treatment. You’re a survivor and I am sure you will find the right answers. Best wishes
Dave,
You have not talked about what you are doing to simplify getting feedback and consensus with your doctors on the information you collect. I work extensively with individuals who have to share information among multiple doctors and family members. They understand it takes a huge amount of their time and/or they have to hold onto the question until they can get to an appointment. My goal is to reduce the time spent retelling the same story over and over and to give them an easy way to ask questions, receive answers and get to a consensus on the plan of action.
I would like to offer you the use of MyKinergy, a service that let’s you create a private, secure online space to connect with your doctors, family, and other close health care providers. You can use it to share the suggestions and information you receive from the web community with your doctors. Your health history and information will be securely and privately held ” in the cloud” and accessible only to those you select. We are unique in that we 1) focus on actual communication and discussion with health care providers, 2) create many-to-many conversations, and 3) maintain the historical thread so someone who joins your team later in the process has access to existing discussions. As an advocate and blogger, I hope you will find the communication-based model for care interesting.
I would appreciate it if you would take a look ( and everyone else ) and try it out. We are just rolling out the service although some families have been using it quietly for months. If it can help save you time dealing with this cancer so you can spend more time on your advocacy then I will have done my job. If it also saves you money ( fewer trips for office visits just to share info etc.) then we will both be happy. Good luck.
Gail
http://www.kinergyhealth.com
http://www.mykinergy.com ( to create an account )
info@mykinergy.com for questions
Update 10 a.m. Friday: I’ve fixed the Patient Communities link (thanks Trisha!) and you’ve given me several skin cancer patient communities to explore, so I added them to that page.
I’m still at a conference in Charleston today – will probably join the communities by nightfall.
A physician friend sent this private note – NOT willing to identify self, because there are too many factors that may make it not apply in general, so I’m posting this here just to give future readers a sense of what a doc who knows me says to me, which doesn’t necessarily apply to others. But notice the thinking.
“Margins” refer to the edge of the tissue that they cut out. My understanding (correct me if I’m wrong) is that after they lop it off they look to ensure that there are no cancer cells at the end of the “lop”:-) … i.e. they seem to have gotten it all.
Notice that “validate my advice with others – don’t take it as gospel.” Personally, I’ll ONLY accept a doc who’s happy to have me cross-check. Because after all, it’s my health, my carcass, right? Any doc who thinks it’s all about HIS/HER ego is not my type of consultant.
But you know that.
AND NOTE that I’m just posting this advice for the record – I’m NOT taking it, just adding it to the thought pile, and sharing here. I haven’t begun to *assess* options.
Dave, really sorry to hear you’ve got another C scare. Thanks for sharing your approach, it really is the “best practice” these days. All the best and I know you’ll rid yourself of this pest.
Another bit of advice in email. (I’m posting all of these here so people can get a sense of the range of advice – so far I’ve only had one wacko suggestion, the site that says cannabis cures cancer so I should smoke hash oil. No data there, but hey, if you’re high, who notices? :-))
More from the same friend:
Depending on where I get it done, that might be a good idea. At Beth Israel Deaconess I know the place pretty well :-), so I’m happy to hang out there.
But…do you see the difference in what you get when you hear from patients?? You won’t find that on the American Cancer Society site, etc.
Another friend who used to have kidney cancer wrote:
Of course, mine’s not precancerous so it’s not relevant to me – again I’m including it here to monitor all the different types of advice an e-patient may get, to sort through.
Dave, I’m pulling for you! And thanks for sharing the process of how you, Mr. e-Patient, could be a “slug” about getting the sore checked. My takeaway from that part of your story is: 1) The best of us can be slackers about getting into the driver’s seat of our health care; and 2) We talk so much about the importance of docs listening to patients, but as managers of our own health care it’s also important for us e-patients to pay attention to the advice/concern of friends and family. OK, in your case the friend was a top doc, but it could easily have been a fellow e-patient who remembered that “a sore that doesn’t heal” is a warning sign and cared enough to speak up.
Anyone have an estimate of what Mohs should cost, total, bottom line?
Dave, if you need anything (information, resources, etc.) from us, just let me know. Keep it up, you have no idea how many people are here to support you!
I’ve lost count of the basal cell cancers I’ve had removed over the past 20+ years. They all appeared in the field where I was treated by radiation for Hodgkin’s 35+ years ago.
I declined the Mohs surgery several years ago when a private dermatology clinic wanted to schedule it for me through a Duke specialist. It was uber-pricey, time consuming, and for God’s sake, the cancer was on my middle back–NOT in view of anyone but my husband and dogs (and THEY don’t care!) I assertively insisted on having the traditional removal, which worked FINE. Had it been on my face, maybe I’d have thought twice, but this showed me that sometimes we need to do our own homework, and second-guess what our doctors’ default treatment$ are. (And I switched dermatologists–they were getting too many free lunches and gifts from drug reps.)
And if you don’t already have one, get a large, wide-brimmed hat. And WEAR it…any time you’re outside. It’s easier than all the sunscreens, and once the habit’s started, it’s second nature.
Just got the news from the SPM list and was way relieved to see the context.. whew.
I hatched my first basal the first summer I spent in AZ (and yes, you can bet a hat is now second nature, as Kathleen said). My dermatologist snipped it and said not to worry, and when the labs came back he was right. I think of it as my “sun sprout” (wry grin)
In all events, so glad yours is not a spooky event. Also loving it that you are using the chance to share your own e-pat process as it happens.
Best of luck amigo with minimal hassle, pain (and costs)!
Dave, So sorry to hear that you have to go through this, but you, more than anyone I know, are equipped to deal with it in the best possible way. Best wishes from an old friend back in Minnesota. Let me know if there is anything I can do.
From @2HealthGuru Gregg Masters: Here’s the interview with @DermDoc Jeff Benabio (SPM member) and @ChemoSabe (Richard Just – hematology / oncology) that mentions basal cell carcinoma.
(Yeah, people keep sending me stuff in all different channels – thanks, but jeeze, people, do you not know that it’s hard for me to keep organized? So I paste ’em all here, where not only an I find them, but others will be able to, too.):)
I’ve decided to do what businesses do when they want to buy something: put out an RFP (Request for Proposals). I put it in a Google Doc. This new post links to it.
Hi Dave-
It does sound like excision is possible, but if Pharma option is considered: http://www.fda.gov/Drugs/InformationOnDrugs/ApprovedDrugs/ucm289571.htm
It may be an interesting study to coordinate the treatment costs v outcomes of Moh’s and excision with local plastic surg. and academic care in one of the patient communities.
best,
Brett (@granitehead)
For some reason two comments by Jeff Benabio MD (@DermDoc) were caught in my spam filter. I tried to release them that day but they only got halfway free. Sorry, Jeff!
A *ton* of info on treatment options in the first one, and a couple more details in the second.
I can see I’m going to have a problem organizing all the input here, because I’ve got comments here, and I invited comments on the Google Doc of my RFP.
Here’s a fabulous addition by radiologist Matthew Katz, @SubatomicDoc, about the radiation option:
Holy cow, here’s a video of surgically removing one, on Google Videos! 12:57. Yep, doc cuts him open and carves it out (the guy bleeds, surprise) and stitches it up. Not terribly gross, but caveat.
I have NO freaking idea why there’s a video like this on YouTube, nor whether there’s any value to seeing it – but, jeeze. Talk about the internet giving access to all kinds of information we wouldn’t have had otherwise.
Of unknown quality or usefulness.
Hi Dave:
First, thanks for all your efforts in promoting patient engagement in healthcare. Figuring out how providers can facilitate is an interest of mine and I hope we can chat more about it in the future!
Sorry to hear about your basal cell carcinoma (BCC) diagnosis — although I’m glad it was a BCC and not a more aggressive skin cancer. As you noted, BCCs rarely travel or metastasize.
Certain factors should be taken into account when recommending a treatment option including size of your cancer, pathology subtype (e.g. superficial, nodular, micronodular, infiltrative, etc.), location (e.g. where on the face?), desired cosmetic outcome, and cost. Were these factors discussed with you? It seems that the provider who saw and examined you may be able to give the best recommendations.
There were some earlier posts on Mohs vs standard excision. Mohs surgeons can also do a standard excision as well. Also, the time you need to set aside for Mohs is variable. It could take as little as ~1 hr to much longer depending on how much tumor is present.
Here’s a site I’m working on with several Harvard Dermatologists from the BIDMC, Brigham & Women’s Hospital, and Mass General Hospital to provide patient-friendly information on common skin problems: here’s the info sheet on BCCs:
http://www.dermnote.com/basal-cell-carcinoma-bcc-of-the-skin/
I’m looking forward to seeing the responses you get from your RFP! Thank you for all your efforts!
Susan
Que te mejores luego my friend. G
Dave, all wind at your back as you get through this. And you’ve gotten through so much more, I have complete confidence in you. In the meantime, I post this link to a blog by a registered dietician who has also been through three bouts of cancer just in case others dealing with recurrence are looking in:
http://www.dianadyer.com/
(She has a bunch of blogs, and one of them has my favorite blog name: 365 Days of Kale.)
Much as I would like to see you visit Israel, by the time you add in the cost of flight to the $5,000. the plastic surgeon would charge without insurance, I suspect you’re better off doing the MOHs in the US. We do have good weather, though, and I know you have dear friends here, so I can give you a couple of good surgeons’ names if you want them :-) They would probably faint at the sight of an RFP!
Here’s a link someone sent me to discussions of Mohs and basal cells in the Medify community, which looks pretty interesting. (See the “What is Medify?” link at top.)
https://www.medify.com/insights/search?terms=mohs&terms=basal+cell#.TzVWWle0iMI.email
Well Dave, this is interesting to observe! If international travel is an option but Israel is out a good fallback might be Canada. I am Canadian and live on the West Coast. I’ve had 4 BCCs removed from my face. No Mohs surgery…just simple excisions all achieving nice clean margins with no recurrence. The first one involved a biopsy and then excision by a plastic surgeon but in the subsequent cases my dermatologist just looked at them, said ‘ya, its a BCC’ and referred me to a local GP whose practice is restricted to ‘lumps and bumps’ removals. I have small scars on 2 of the 4 sites but they are not very visible. Cost to me…nothing in our socialized system (and no wait either). What would it cost you in a private Canadian clinic…not sure but here is some info to support your negotiations…a dermatologist or plastic surgeon gets between $60 and $73 for an initial consult involving a Canadian (in other words someone insured under our system)…subsequent office visits generate a fee of between $29 and $40…biopsies are $48…excision of a skin tumor with no graft pays the MD between $62 and $87. As for Mohs, the only entry I find in the British Columbia fee schedule suggests the maximum fee an MD would collect for treating a resident would be about $1300. I find it fascinating watching my own health system…it is even more fascinating to see how different systems approach the same issue. Good luck!
Dave, I’m pulling for you!
Learning about any diagnosis can be devastating
and anything having the cancer label on it causes
my stomach to knot up!
My Mom has skin cancer where they went in and removed the
lymph nodes in her left leg.
I see how she has to deal with this day after day…
There is so much about the fear of skin cancer and it has
left many people avoiding the sun.
I have also heard that many people are dangerously low in their
level of Vitamin D and the sun does a great job of producing
this vitamin!
I have heard that Vitamin D deficiency among people is also
at an all time high right now.
I feel that the Vitamin D from the sun is possibly a unique
and extremely important version of Vitamin D
compared to what we get from either dairy or a
good whole food organic multiple vitamin.
There has to be some balance between getting the sun
with sun screen and so forth and still avoiding
skin cancer – it is a really tough balance!
Have you heard any research studies on this?
Is the Vitamin D from the sun a very important and
unique way of getting Vitamin D than from dairy?
Feel Better!
Best Regards – MHC
We have to be careful with skin cancer! Make sure you check those moles!
Moderator’s note: here is a classic spam comment, posted by a “Kate Welling at Gmail,” acting like an actual commenter, but with a hidden link to the business for whom they’re spamming. In this case it was Regency Dermatology in Phoenix who hired the spammer. I’d recommend avoiding any provider who hires spammers to do their marketing!
Here’s the spam comment “Kate” posted:
I was surprised to read that a sign for skin cancer is a sore that won’t heal. This is how a little scab is under my nose. I didn’t know that this was bad! Moh’s runs in my family, so I am going to look for a dermatologist to help me find out what this is and how to go about it.
Notice too that it’s pretty dumb to say “Moh’s runs in the family,” because Mohs is a surgery, not a disease. And it has no apostrophe in it. So it’s a dumb spammer, too. :-)
Dave’s personal journey with skin cancer is a powerful reminder of the importance of vigilance and self-care. Sharing personal experiences like this helps raise awareness and encourages others to prioritize their health. Wishing you strength and a speedy recovery, Dave!