Frequently Asked Questions
Do I have to talk to my doctor about this, or will SpeciCare?
In most cases the patient and/or caregiver must express desire to have the tissue saved and tested with SpeciCare. If your physician has questions or concerns, our medical team is happy to speak with them. If you do not have an oncologist yet, it’s important to note that SpeciCare is a pre-surgical/biopsy decision and does not require you to have an oncologist going into surgery. Often, that decision is made after surgery.
What happens to my tumor if I don’t store it in a tumor bank?
Generally, hospitals keep a small portion of the tumor for subsequent analysis if questions arise later. They preserve it by placing it in formalin and embedding it in wax, which does not keep it alive and limits its usefulness. This tissue is then discarded after a few weeks. Our process emphasizes the fact that your tissue is like your fingerprint. Everyone’s is different and you have the right to own and control its use for your benefit. By storing it alive with SpeciCare, you can maximize the opportunities and create options that would otherwise not be available in your care.
How long will I be able to store my tissue?
Our precise cryopreservation process ensures that your tumor tissue will remain viable for not (alive) months, but years, for your use.
Why is access to my live tissue and blood products so important?
Many current treatments (adoptive T cell therapies, personalized cancer vaccines) and diagnostics (chemo sensitivity tests, organoid growth) require the patient’s live cancer cells and blood products. Personalized cancer vaccines and the adoptive T cell therapies that are on the horizon now are manufactured from live cancer cells and blood, and are at the forefront of personalizing cancer treatment. Chemo sensitivity testing allows your care team to understand which chemo and drugs work best for you personally by studying their response to your live cancer cells. Your tumor tissue must be collected at the time of your surgery or biopsy, and stored alive to allow for these cutting edge, precision cancer treatment options.
Does it matter what type of tumor I have?
Who will recommend the appropriate way to utilize my tumor tissue?
By choosing to store your valuable tumor tissue with SpeciCare, you will have control of how that tissue will be put to best use for your care. You and your care team will determine the best use of your tissue for your current and future care.
If my cancer transforms or is altered by chemo will my stored tissue still be effective in providing me options?
As tumors evolve, they add mutations and continue to express the older mutations. So, the “old tumor” carries a significant portion of the unique information needed. It can be difficult, when and if a cancer comes back, to get enough tissue to work from new tissue. The old tissue is highly valuable to the future care of the patient. The ideal situation is to include both old and current tumor tissue in finding the best therapies for your situation.
Will utilizing SpeciCare change how the surgeon does my surgery?
No, you will still get a pathology report and diagnosis from your doctor. Once the surgeon has removed the tumor from the body, it is sent to pathology. The pathologist will receive the tissue required to complete the analysis and staging, and then discard it later as waste. At SpeciCare, we realize this is the extremely valuable tissue, essential for extending your care beyond current standards.
Will my surgeon know how to collect my tumor tissue?
The SpeciCare process is designed to allow you peace of mind when you decide to take ownership of your care and store your tumor tissue viably. We have worked closely with numerous community hospitals and major cancer centers to ensure that our tumor collection and storage process has been designed to make things as simple as possible for you and your clinical team.
A SpeciKit with easy to follow detailed instructions for your clinical team will be sent to you, your provider or a loved one prior to your surgery. You bring it with you on the day of the procedure and give it to the appropriate person on your care team. Our patient advocates will coordinate the shipping details and logistics, and are available if you have any questions. Please feel free to contact us anytime the day of the procedure, since we are committed to what is best for you and your loved ones.
Will utilizing SpeciCare mean that I will not get a pathology report from my doctor?
No, you will still get a pathology report and diagnosis from your doctor. Once the surgeon has removed the tumor from the body it is sent to pathology. The pathologist will retain the tissue required to complete their analysis and staging. Excess tissue, that is typically discarded as medical waste, is what is sent to SpeciCare.
Can I still store my tumor tissue if I’ve had chemo?
Yes you can. If your doctor has scheduled you for surgery, that means there is still evidence of a tumor, even though you’ve undergone chemo. After we receive your tissue we cryopreserve only the cancerous tissue, and will trim away the tissue that has been killed by the chemo.
If I have a recurrence, do I need to recollect if I previously collected with SpeciCare?
Repeat collection is always available and encouraged, but not required. The initial tissue can be used for additional testing, as needed.
What is the cost to collect, test and preserve my tumor through SpeciCare?
The cost varies based on the testing desired. For patients who are unable to pay, SpeciCare works in conjunction with the Foundation for Individualized Advanced Treatment for financial assistance.
Does insurance cover the cost of tissue storage?
It is possible that your insurance company will reimburse you for some or all of the cost, but our patient advocates explain to patients that this is typically an out-of-pocket expense and we will supply you with an itemized bill for your use in submitting a claim.
How much tumor do you need?
There is no definitive answer, but our patient advocates simply tell our patients to store as much as possible. Since you have made the decision to use SpeciCare, the more tissue that is kept alive the more options you will have now and in the future. All tissue is of value to you, and even if you have a small tumor or biopsy (or are storing ascites/fluids), that does not necessarily mean that the number of cancer cells we will keep alive is small also. Please contact our patient advocates with any questions, as many factors play a role and can have an impact on your future care plans.
Do you ship kits outside the United States?
Yes we do. Please contact one of our patient advocates for assistance.
How do I access my tumor when I need it?
You are our number one priority, and when you and your care team determine how best to use your viable tumor tissue, contact one of our patient advocates and we will handle all the logistics for you. This will allow you the peace of mind that the tumor tissue that you have chosen to preserve will be there and available now and in the future.
Will any of my tumor be used for general research?
Each patient’s situation is considered unique, therefore some of our conversations include opportunities for the patient to decide if any of their excess tissue is used for research. Our founder, Ken Dixon, MD, is committed to enabling patient access to all options available. Our model is completely patient centered and driven, with an overarching goal of delivering the patient his/her best treatment options first and foremost.
Is there a chance my tissue won’t be viable (live)?
There is a chance that your tumor tissue might not be viable. Upon receipt of your tissue, our partner pathology laboratory in Indianapolis will check your tissue for viability. We will mail you a report from our board-certified pathologists with the results of their findings.
What happens to my tissue if I die?
Your family members will determine how the remaining tissue will be handled. SpeciCare allows for a 90-day period to enable our patient advocates to work closely with them to carry out their wishes.
Doesn’t my hospital save my tumor?
Generally, hospitals keep a small portion of the tumor for their own purposes but not in a live state. Typically they either preserve it in paraffin or flash frozen, neither of which keeps it in a live state and has limits to its use.