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Squamous cell skin cancer- where to go

5 years ago

How do I find a leading institution for squamous skin cancer? Looked at the big names but not having confidence in this specialty area.


Any suggestions?


TIA!

Comments (38)

  • 5 years ago

    Where do you live? I’m guessing your dermatologist has done a biopsy? What did he/she suggest?

    gardener123 thanked maddielee
  • 5 years ago

    Plenty of derms perform Mohs surgery locally, and I have a consult scheduled for next week.


    But there is a history of skin cancer in the family so I am interested in the most conservative approach, and don't mind the inconvenience of getting on a plane to a leading research center.


    I'm not able to discern which institutions are doing research in this area, so am doing some due diligence and hoping to draw on the experience/expertise of the GW team.

  • 5 years ago

    I had basal cell on my face and my husband has had all 3 types of skin cancer(basal, squamous). We go to a large dermatology practice and see a mohs surgeon there. I'm really happy with the job he did on my nose. I have a very thin, hardly noticeable scar.

    When you say 'big names', what do you mean? What does your derm. suggest?

    gardener123 thanked czarinalex
  • 5 years ago

    I was thinking like MD Anderson. Dana Farber... that kind of a thing. Or is that overkill?


    Glad to hear you had a good experience, czarina.


  • 5 years ago

    My husband has been receiving treatment at Memorial Sloan Kettering for the past 43 months, stage 4 metatastic lung cancer. in my opinion, when dealing with cancer, seek out the best facilpity even though you may have to travel. I drove 4 1/2 - 5 hours one way every other week from Gettysburg PA since the medical care there is not the best. Ended up moving to Connecticut 28 months ago to shorten the commute. i Do not regret making the decision to go to MSK, his physicians are brilliant. Best of luck!

    gardener123 thanked eileenc
  • 5 years ago
    last modified: 5 years ago

    Depending on what needs to be removed, and its location, I would want a plastic surgeon doing the surgery and not your average dermatologist. I have the scar to back up this statement ...

    gardener123 thanked chispa
  • 5 years ago

    Unfortunately my daughter has the scars from a plastic surgeon! You just never know.

    gardener123 thanked RNmomof2 zone 5
  • 5 years ago

    Mohs surgery is conservative approach and appropriate for these type cancers. I've had a few of these.

    gardener123 thanked jrb451
  • 5 years ago

    The top 5 for cancer in general are usually MD Anderson, Memorial Sloan-Kettering, Mayo (the one in Rochester, MN), Johns Hopkins and Dana-Faber.

    Here's a list of NCI-Designated Cancer Centers, too. Unless someone has experience with some of these in exactly your area of interest, you may need to call each one to get a sense of whether or not they are what you want. You can also do internet searches for recent cancer research grants to learn what is being researched and by which institution. I find that interesting but not helpful in the near term, because the path from research to clinical trials is a lengthy one.

    It's also worth mentioning that a facility doesn't have to actually do research itself to provide excellent treatment. I also believe that one's mental state affects treatment outcomes. Stress is a negative. Travel for treatment is stressful. Local treatment is too if you're skeptical about the provider's skill.

    A lot depends on the care available near your home. If lengthy travel is required in any case, then I'd go to the nearest NCI-designated cancer center. If there were reasonable local options, I'd start there for diagnosis and treatment plan. Then I might want to get a second opinion from one of the NCI-designate cancer centers that I felt confident about.

    gardener123 thanked Moxie
  • 5 years ago

    Do you reasoned the big guns for squamous cell cancer? I just had Mohs procedure under my eye for basal cell. This is the third one and neither of the previous cancers returned. You don’t leave the office until they are sure your margins are clear. Not sure where you live but if your local healthcare providers are very good, I would think there’s no need to go elsewhere. Of course, do what your doctor recommends. In Philadelphia the top place to go is the University of PA , Abramson Cancer Center.

    gardener123 thanked dedtired
  • 5 years ago

    Can you give us more information on where the cancer is located and how advanced or large, deep it is?


    While I agree with not staying at a small rural hospital, for a run of the mill cancer I would not feel the need to go to one of the big name centers. There are protocols for treating all the different types of cancer and I believe the big name clinics would do the same things as a non research hospital. Clinical trials or the rare cancers are where the big name or research facilities is where I would want to be,


    Hospitals have Tumor Boards that usually meet weekly. This is where a multidisciplinary group meet to discuss individual patients. Plan of care is discussed to make sure it is the best for the patient. I work for a multi facility organization with hospitals in 7-10 cities. People from all of these facilities are involved in this meeting.


    I am currently being treated for breast cancer. My case is a little unusual but again there is a set treatment protocol that is being used. When I was in another city meeting with my breast cancer only surgeon, she mentioned that they had discussed me the week before. I hadn't thought about me being presented even though I was aware of the board and the MDs I work with unfortunately have to attend occasionally.


    The problem with going to a big research facility is that they may be too aggressive for your individual case. Twenty five years ago my DH was diagnosed with non Hodgkins lymphoma. He was stage 1, but it was a very unusual primary site. We were referred to the Univ of Chicago who at that point was the big place for NHL. They told us that he really didn't belong there. Their trial would be very aggressive, was meant for more advanced cases, really didn't want someone to get treatment and go back home for their local docs to handle any complications. They really suggested we go home and use the tried and true protocol for his disease. We did and he is cured.

    gardener123 thanked RNmomof2 zone 5
  • 5 years ago

    eileen, I'm glad you were able to do that for your husband. I hope he is doing well, and you are staying strong. I agree. I think at the end of the day we don't want any regrets about something we already have very little power over. You were smart to go to MSK. I'm having trouble finding an equivalent medical center for this type of skin cancer. Sending you and DH my very best wishes.


    chispa, I hadn't thought of a plastics. Mohs seems to be a derm thing.


    RN, if a scar is the price to pay for cancer-free, no problem there. But I think it makes sense to consider all options.


    Moxie, thank you for your thoughtful reply. I chatted with NCI this morning trying to get a list of clinical trials in the US. I wish I could show you the transcript. It's almost comical. In response to my Q regarding a list of research centers with clinical trials I received a dictionary entry for squamous. 30 minutes with them. Specific information is sure hard to get.


    ded, jr,, my mother died in her 40s because of a misdiagnosed melanoma.


    While I am not given to histrionics, I'm also not fooling around with this. I think I should do at least as much research as I put into a new refrigerator, right?


    But how do you find the leading institution? I've spent the morning googling and calling various facilities. So far not a high level of confidence that I'm on the right track. I have a call out to someone affiliated with Dana Farber. So still fact finding...

  • PRO
    5 years ago

    To find an expert, one way is to do a PubMed search for your type of cancer, limiting the results to the past 5 years and humans, and look at the names of researchers who are publishing. PubMed will list their institutional affiliation.

    gardener123 thanked MDLN
  • 5 years ago

    My DH has regular appointments at Dana Farber, his last visit the doctor saw something suspicious on his face and called in a dermatologist to take a look. She was lovely and very thorough. Its an amazing hospital. Good luck with your search.

    gardener123 thanked cran
  • 5 years ago

    MSK and NYU have superb skin cancer centers. I have had multiple basal cancers and melanomas run far and wide in my family. I would choose MSK any day. NYU is excellent also but I hate being subject to multiple med students being privy to every exam and discussion.

    gardener123 thanked hcbm
  • 5 years ago
    last modified: 5 years ago

    Just thought of something else - insurance. Insurance plans differ, but be sure to get a referral from your primary before you go out of network. In some cases, a referral can change "out of network" to "in network" and affect your costs.

    I'm fortunate to live in a place with great health care options. I had DH's local provider do a referral to a neurologist at Mayo (90 minutes away) when I wasn't comfortable with how things were going. In our case it made a huge difference in what we had to pay out of pocket.

    BTW, Mayo confirmed that the local folks were doing the right things. Once I calmed down, I realized how really good his local neurologist is. We're nearly 2 years out and things are going well.


    ETA: Mayo's care model really shines in complex cases that cross different specialties. They also train all staff to interact well with people. I have never had such consistently positive interactions with a wide range of people at an institution. I have no idea how they do that.

    gardener123 thanked Moxie
  • 5 years ago

    I would go to MSK or MD Anderson. I go to MDA because I happened to live in Houston when I was diagnosed with a recurrent sarcoma. I wouldn’t be concerned that either facility didn’t have adequate squamous cell expertise. If you’re willing to travel to one of those places then do. I had a second different type of sarcoma and got a second opinion at MDA and they confirmed the protocol prescribed by my local oncologist so I only went once for that.

    gardener123 thanked 3katz4me
  • 5 years ago

    Here's the way it's worked for me on my last few skin cancers. Dermatologist biopsies. If the sample is Basal cell with clear margins I come back for an office visit in 3 months. Basal cell and/or squamous with margins not clear I'm referred to a MOHS specialist. Three times I've had a pre-arranged appointment made for a Plastic Surgeon immediately following (same day) my MOHs procedure to do reconstruction work, if required. In two of those case an operating room was booked.

    I've been seeing a Dermatologist every 3 months for the last 30 years. I've even participated in clinic trials for certain drugs. I feel like we have a handle on this and everything had worked out so far.

    gardener123 thanked jrb451
  • 5 years ago

    My dad had melanoma. Here is a resorce list we used of top melanoma treatment centers by state. Maybe call one of the centers closest to you and ask specifics about your cancer treatments. https://melanomainternational.org/web-resources/cancer-centers/#7 Good luck.

    gardener123 thanked roarah
  • 5 years ago

    oh my gosh, RN, so sorry—our posts crossed and I didn't see your last post when I replied.

    I am sorry to hear about the bc, but am so glad you are in good hands. I definitely think a multidisciplinary approach is important, and I really appreciate your letting me know that the flagship facilities consult with local branches as a team. That is an important piece of information. MDA and Mayo have satellites in very manageable cities. I'll call a few tomorrow and see how they work with the flagship. Your point is also well taken that it's all relative, and a more routine matter may not be the best fit for an aggressive center. Wishing you all the best with the bc, and so very happy your DH is cured! All good news! Thanks again for taking the time to share your insight.

  • 5 years ago

    mdln, PubMed hasn't helped me find a direction yet, but it sure made me cross a few places off the list. I called one of the centers with a recent study and they don't even perform Mohs surgery. A top 10 NCI center. Very, very helpful, thank you for sharing that.


    3katz, why I wouldn’t be concerned that either facility didn’t have adequate squamous cell expertise. Can you please elaborate? I was thinking that is the goal.


    jrb, was the plastics a part of the team? or an affiliate?


    Thanks hcbm. I agree with about the med students. I usually don't mind, but this time I do.








  • 5 years ago
    last modified: 5 years ago

    Ded, MIL had a basal cell and Moh's under her eye a couple of years back. Fortunately, no problems since. we are fortunate here in the Carolinas there are good cancer hospitals.

    Two of my brothers have been treated at Roswell Park in Buffalo. My youngest brother had a skin cancer but I don't know what type.

    gardener123 thanked gsciencechick
  • 5 years ago

    I don't have any information but wanted to say good luck to you.

    gardener123 thanked mtnrdredux_gw
  • 5 years ago

    gardener123wewantsophie, “plastics” weren’t in-house with the MOHs Dr. They specialized in the area were the cancer was to be removed: eye, nose, face.

    gardener123 thanked jrb451
  • 5 years ago

    I totally agree with jrb451. I've had basal cell skin cancer removed from my face. Definitely you want a MOHS trained surgeon. Here in my area, there are not many of these surgeons. In fact the surgeon I used quit seeing all other dermatology patients and only sees those who will be having MOHS surgery. He works the same way as jrb mentioned (for face surgeries at least). You have the option of him doing the initial surgery (removal of cancer) and then seeing (directly afterwards) a plastic surgeon to close/finish. My surgeon has so much experience and I had seen patients who he had performed facial surgeries on, that I felt comfortable in allowing him to do my complete procedure. A biopsy would show what type the skin cancer is. I can understand your concern about melanoma, but I would think a second opinion would suffice. However, would they have access to biopsy from first doctor? Would another physician do a second biopsy? I'm not sure how that would work. Best of luck!

    gardener123 thanked tinam61
  • 5 years ago

    Gardener - my point that I probably didn’t make very well is that MDA and MSK are world renowned cancer centers with many very specialized cancer experts. I don’t think you could go wrong at either place.

    gardener123 thanked 3katz4me
  • 5 years ago

    Gosh I’m feeling like such a baby reading about some serious cancer cases. I’ve had several basal cell cancer surgeries all of which have left scars (2 on my face) plus some kératoses removals that also left scars elsewhere. I have another on my face that the dermatologist believes is keratosis and I’m not looking forward to another scar to confirm.

    I sincerely hope all of you succeed in your treatments and all keep up your screenings!

    gardener123 thanked User
  • 5 years ago

    Delilah, chemo cream ( efudex) has worked well for me without leaving any scars. It is horrible for a few weeks but my skin looks like I had a chemical peel after it heals. :)

    gardener123 thanked roarah
  • 5 years ago

    Did I miss where you said the location of your squamous cell cancer?

    I had it on my upper arm - right where my old polio vaccine scar is/was. I was treated with a liquid chemo, probably similar to efudex, and it was very successful. I certainly wouldn't want to do the same if it were on my face tho.

    gardener123 thanked carolb_w_fl_coastal_9/10
  • 5 years ago

    At the risk of sounding cavalier, I’m puzzled about why you are feeling the need for such intensive research and treatment. Although squamous cell is of course classified as cancer it is a relatively innocuous type of that disease. So unless you have some really odd situation or it’s been left untreated for an exceptionally long time, taking care of it is simple and it’s not life threatening at all. As other have said the research/concern is more about scarring and aesthetics of how your treated area will look post healing.

    It’s certainly wise to find a very good doctor but clinical trials and MD Anderson for squamous seems bizarre to me. If it was melanoma, that’s a different story but for squamous you get it treated and move on.

    gardener123 thanked runninginplace
  • 5 years ago
    last modified: 5 years ago

    We just went through this with a family member - a squamous cell on the knee. It was biopsied and removed by the dermatologist without incident.

    However we had a lengthy discussion about other SCC situations and how they should be handled.

    There are a lot of variables that the doctor considers when deciding the treatment: age of patient, sex, medical history and family history, skin ( fair skinned, blue or green eyes, red or blond hair etc.), location (on an extremity or on the face or neck, etc) size of SCC, color, shape, are there other suspicious spots, how long has this spot been neglected, lymph nodes etc.

    SCC is usually slow growing and when caught early is easily treated. If left untreated it can spread. If you've had it once you're also at a greater risk of getting it again. So regular checkups at the dermatologist are important. It's the second most common form, right after Basal Cell.

    However I'm a little confused when you write that you want a 'conservative approach' yet you're interested in a research center doing clinical trials - which are experimental or involve new or untraditional treatment.

    Have you had a biopsy, what treatment was recommended and have you discussed this with your dermatologist?

    gardener123 thanked maire_cate
  • 5 years ago

    I used to work for a dermatologist whose residency was performed at Stanford. He took great pride in his surgical skills and his patient's scars were minimal. I would have had complete trust in him with any skin cancer procedure. My point is that, unless there is more to your situation than meets the eye, I wouldn't hesitate to have an experienced board certified dermatologist do this surgery; they are very well trained.

    gardener123 thanked llitm
  • 5 years ago

    Thanks so much for letting me collect my thoughts and frame my course of action. Wanting a MOHS specialist (and not someone who does it in between botox, etc) I found a very well trained physician who is within driving distance at a ranked facility. All done, high level of confidence in the process and outcome. So thank you all!


    running, I find your comments more matter-of-fact (which I appreciate) than cavalier. I reached out to a friend who is a notable pathologist, and he basically concurred with you and some of the others here. Thanks to all of you for helping me to have good questions. Something I learned from him years ago (overkill for squamous and I didn't do in this instance, but I thought I'd throw it in as a PSA for more serious scenarios) is to have biopsy slides sent to 3 different labs. At his counsel, I did that a few years ago. The first (local hospital) report was terrifying, I spoke with him and we sent the slides to 2 highly regarded pathology labs. Those reports mirrored each other, and the treatment recommendations were a million times better than the original report indicated.


    The takeaway from my MOHS research is that it's not difficult to tell on the slide if the margins are clear. The precision comes into play when extrapolating the cells on the slide to in situ. To oversimplify, if the slide shows more cells need to be removed at 6 o'clock, they better know where 6 o'clock is on the site...


    roarah, so sorry about your dad :(


    Lars, I'm so glad you caught it early, and have someone with his credential close by.


    jrb and Lars—stay diligent!


    Thanks again for sharing, and I wish you all the best health!


  • 5 years ago

    I got the last of my basal cells removed today, and so now I have a bandage on my face (right cheek) and had to take Lyft to and from the clinic. I have to go back in a week to get the stitches removed, and then I should be done. They removed stitches from the melanoma surgery (two weeks ago) on my back today, but I still have stitches on my wrist from last week that they will remove next week. The doctor said that my face will heal faster because it has more blood vessels, and so that is encouraging, but I dread seeing the scar that will be left.

    I do consider myself lucky that the melanoma was caught fairly early, and I'm not concerned about having a scar on my lower back. I generally wear a rash guard when I swim, to protect me from sun, and so no one would see it.

    I will see my doctor in three months, since I had melanoma. It would have been six months if I had only had basal cell carcinoma.

  • 5 years ago

    Just wanted to add that I have a huge bandage on my right cheek right now, just below my eye, and so I am unable to wear my CPAP mask :(. They put a thick bandage on me because of the bleeding, and so I may be able to switch it to a thinner bandage tomorrow, but I still think it will interfere with my CPAP working properly. I didn't even think to ask the doctor about this before I left the office.

    I am having trouble going to sleep now and am not sure how best to cope with this issue. It is one thing not to be able to wear my mask, but in addition, I have residual pain from the surgery. It may be a few days before I can sleep normally again.

  • PRO
    5 years ago
    last modified: 5 years ago
  • 5 years ago

    Lars, did your dr. not tell you about the "scar" cream? Ask him about it when you have stitches removed. I purchased it from my dr after having MOHS surgery. If I remember correctly, I was to keep the incision slightly moist with an antibacterial ointment until I had the stitches removed, then I was able to start applying the scar cream. I can't remember the name of it. I don't really have a scar, just a faint "line" that is very hard to see. Hope you feel better soon!