Squamous Cell Carcinoma in a wound

I just got the Moh's surgeon's bill to my insurance co. It was over $4000. Fortunately, I have insurance, which I sadly noted that you do not have. This will give you some idea of the cost.
All my many skin cancers, Squamous and Basal Cell were never mentioned as being aggressive, but your surgeon, of course, knows best. I also have never heard of these cancers needing a PET scan. I even had 2 Melanomas, and never had anything but a biopsy.
Please try and get more info from your dr. about skin cancers and keep us informed---Good Luck!

karynl11 @karynl11. It's awful having to wait so long to see the surgeon. Here are a few things I've learned.

If you are in the US, do you have health insurance? If yes, look for the phone number on the back of your insurance card and call. Tell the insurance person that you are having MOHS surgery for squamous cell carcinoma and if your insurance will cover the cost. Is there a cost to you and if yes, what is it?

Ask lots of questions of your doctor.
I'm assuming the doctor is a dermatologist who has a speciality in MOHS surgery?
Ask the doctor how many or how often they have performed this surgery.
Ask the doctor specific questions about the squamous cell carcinoma.
Ask the doctor to tell you what they know about this type of carcinoma.
How soon after the MOHS surgery will you hear back about the tissue that is removed during the MOHS surgery. The doctor will send the removed tissue to pathology.
A pathologist (a speciality of medicine) will examine the tissue under the microscope for a final diagnosis and send that report to your doctor.

I know many people who have had MOHS surgery and had good outcomes.

In the meantime, here is some information about squamous cell carcinoma:

Mayo Clinic: Squamous Cell Cell Carcinoma of the Skin:

-- https://www.mayoclinic.org/diseases-conditions/squamous-cell-carcinoma/symptoms-causes/syc-20352480

Your Mohs surgeon should be helpful in addressing all your questions with their expertise in squamous originating in the skin. A pet scan is not usually done
routinely for lower leg lesions. They will be able to tell
more about your risk factors depending on size and depth in layers. They will see more of the pathology type
with the frozen sections in the procedure. Mohs is usually the best approach for your situation.

Coming from the pancreatic cancer side where I had a recurrence at the surgical site despite "clean" margins in intraoperative and post-operative pathology... my Whipple surgeon and another prominent pancreas surgeon both told me the pathology reports are not perfect. They might not be able to examine 100% of the tissue or they might make their "final cut" from a piece that doesn't contain cancer cells while a nearby piece does.

I realize squamous cell cancer is an entirely different animal, but bring this up to inquire if derm surgeons send the tissue for next-generation sequencing or other testing, or preserve it in any kind of tissue bank for later analysis or use.

With pancreatic cancer (and several others), there is a test called "Signatera" from Natera Corp that can check for circulating-tumor DNA (ctDNA). It creates a panel based on the DNA of the original tumor. Then, during later follow-up, a blood sample can be tested to see if it contains ctDNA matching the original tumor. Absent symptoms or a different blood (tumor marker) test or imaging, this might provide your earliest detection of ctDNA and thus a definite justification for follow-up imaging like PET. Signatera returns a quantitative report with the number of tumor molecules detected per unit of blood. As such, repeat Signatera testing (from blood only) can also be used to monitor the progress of treatment if needed.

An oncology research nurse told me that "tissue is the issue" with most cancers. There is not enough available (or saved / sent out) from most procedures. With all the advances in understanding how to target tumor metastases based on their DNA and mutations, as well as the possibility of generating targeted treatments derived from the original tumor, it would be a shame to ever let the opportunity to save tissue be wasted.

Disclaimers:

1) I have zero medical training.

2) I have no financial stake or interest in Natera, and I believe there are other companies offering similar tests. I'm only familiar w/ Signatera because it was done for me and I know of at least three prominent pancreas treatment institutions that use it.

FWIW, there are also various tumor storage and tumor sensitivity testing companies out there. No stake in these either, but I've been in contact with both regarding my own case:
https://storemytumor.com/
https://www.travera.com/

Thank you so much for your detailed response! I was just reading about new treatments regarding circulating tumor DNA and a new clinical trial in the UK. These new targeted treatments are very encouraging. I will ask my doctor about how comprehensive the tissue testing is, and whether it’s preserved. My SCC is likely to be deep, as it originated in a wound, and I’m a little freaked out about that. I also wonder how thorough the MOHS procedure is when it’s being performed in a dermatologist’s office and not at an oncologist or hospital. But your advice will provide me with the right questions, and I greatly appreciate it. Thank you—best wishes for a full recovery, as well.

You're very welcome. I don't know enough about skin cancers to know if a treatment that was developed first for melanoma could also work for squamous cell carcinoma, but you could investigate some of the links I posted regarding TILs (Tumor Infiltrating Lymphocytes) in this thread: https://connect.mayoclinic.org/discussion/metastatic-melanoma/?pg=1#comment-1075615 and ask your docs if something like that is possible.

(If they say it's not possible, ask them to save as much of your tissue as you can anyway, in case some other institution says it is possible! 🙂 )

FWIW, in the US, there was one institution where the doctor told me my insurance would not cover a PET scan at my then-current condition. I asked the hospital's radiology department how much it would cost if I were to self-pay, and the answer was about $5000. Apparently the FDG radioactive tracer is rather expensive! But there may be other options (e.g., "medical tourism" or other shopping around where you could get the PET scan cheaper.

Please be as proactive and assertive as you can be. I don't know what the real metastasis pattern is for squamous cell, but I have a schoolmate from decades ago fighting it now, and it looked rather small on the surface to start.

Wishing you the best!

The MOHS surgery involves the surgeon removing skin and tissue around the biopsy site. When they do that they send the removed tissue to the pathology department to see if all cancer has been removed from surronding tissues. If not they come back and do more tissue removing and that goes on and on until no signs of cancer are present.

Having a pet scan on top of the MOHS surgery procedure is not something I would do unless the pathology department says the cancer has spread beyond the tissues being removed. But this is me. I did have PSMA (Pet Scan) done when I had prostrate surgery as that type of cancer can spread much more rapidly and to surrounding tissues than Squamous cancer does. Squamous cancer is very slow growing. The last one I had removed was from a wound that did not heal right.

@karynl11, how did your surgery go? How are you doing?