Below you will find a series of potential questions for your first visit to your medical oncologist. Keep in mind that this is a rare cancer and thus many oncologists will not have vast experience in treating it. It may be a good idea to let the oncologist go through their discussion and plan about treatment, prognosis, etc. Then, if the questions below are not covered, you could ask them. It may also be a good idea to bring up this website which has the Physicians Network contact information. This could be helpful to a physician who has not treated SCCOHT before.
Have you treated this kind of cancer before?
(It is quite likely the answer will be no due to the rarity of SCCOHT. They may have experience treating other small cell cancers—lung or cervical)
What is the protocol you recommend and what are the drugs you would be using to treat me?
(This may be the place to refer to the physicians and contact information listed on this website)
What are the side effects of these drugs?
What will the course of treatment be?
Can I work during treatment?
How soon will I begin to feel the effects of the treatment?
Will you consult with Cincinnati Children's Hospital, MD Anderson or other specialists on treatment protocols? (See our Physicians Network page)
Will you start with a baseline scan? What kind of scan? MRI, CT, PET? How often will you do a follow-up scan?
(The patient should have been staged up front with CT scans and usually follow-up scans are done every three months)
Are there clinical trials being done that I would qualify for?
How much of my treatment will be covered by insurance?
(If the chemo is standard of care it should be covered by insurance. Most hospitals will pre-authorize treatment before it is started. If it is going to be non-standard therapy, then you should check with the finance team at your hospital who can work with your insurance.)
Will you do any genetic testing?
(Either germline testing for inherited mutation or tumor specific testing?)
Are there any fertility measures that can/should be taken before chemo begins?
If a secondary surgery is done, will you be willing to arrange for fresh/flash frozen tissue to be sent to researchers?
(We can get you in touch with researchers who will make all the arrangements directly with your surgeon/hospital)
*This would be a question for your gynecologic oncologist.