newly diagnosed stage 4 m thyroid cancer

alapah said:

what a lot
What a lot to absorb in two days. I can relate. So hard to stay calm, especially when you're awaiting news and recommendations. It's easy to get ahead of yourself. One day at a time. So easy to say, so hard to follow, I know.

I highly recommend seeking out a thyroid cancer specialist - one who deals with advanced thryoid cancer because many endocrinologists are not able to remain on top of the studies, treatments, etc. Lung mets can be difficult to treat. The first line of treatment for any papillary thyroid cancer patient is surgery followed by RAI (radioactive iodine treatment which targets thyroid cells).

Two fantastic sources of information online (for me anyway) have been the thyroid cancer survivor's association (thyca.org) and the adv-thyca discussion board on yahoogroups. The advanced thyca group has many very knowledgable members who are dealing with complex cases. They will understand your situation and be able to offer recommendations of all kinds (specialists, options, etc). People on this board are also a great help - though I'd say most are facing less complex situations.

I'll be thinking good thoughts for you. Know you're not alone.
eileen

(I've been through surgery, RAI, external beam radiation, and now oral chemotherapy - still feeling pretty good and loving life too)

miladyx said:

Do you know what kind of
Do you know what kind of thyroid cancer it is?

miladyx said:

Do you know what kind of
Do you know what kind of thyroid cancer it is?

miladyx said:

Do you know what kind of
Do you know what kind of thyroid cancer it is?

miladyx said:

Do you know what kind of
Do you know what kind of thyroid cancer it is?

alapah said:

finding docs
I am not sure I can provide you with a list of names, necessarily. Can depend on where you live, your insurance, etc. What I would say is you might find it helpful to contact some of the key institutions conducting research on thyroid cancer as a place to start. The ones I am aware of are mainly on the east coast, and Mayo Clinic in MN. East coast places of note include Memorial Sloan Kettering in NY, Johns Hopkins in MD and Univ of Pennsylvania in Philadelphia. Oh, also MD Anderson in Houston. I have had consults with Dr. Sherman at MD Anderson, various docs at Mayo (endos, radiation and medical oncologists) and also Dr Marcia Brose at UPenn.

I am sorry I am not familiar with NCA...but I would imagine that surgery to remove the thyroid would still be a first step for you. It is true that mets to bone and lungs cannot be dealt with surgically. Some bone mets can be treated with external beam radiation and/or chemotherapy. Same with lung mets, though radiation is less common. Sometimes radioactive iodine can help to treat mets in lungs, but in some patients, such as myself, cells become less receptive to iodine and that treatment option no longer works.

My experience has been that many cancer centers and hospitals are willing to review records before seeing you - you can call their patient services lines and ask about this. I did that with Mayo and a few others - sent records and films on discs and asked a few questions. They then responded to several questions but really need to meet with you in person for a full evaluation. That initial review did help me though. If your insurance allows it, many places will let you make your own referral.
hope that helps
eileen

Rapier67 said:

MTC Diagnosis
I too was recently diagnosed with Medullary Thyroid Cancer. One thing that I can tell you is that it is a lot to swallow. Mine is stage 3, primarily within the neck area; however, they are watching a small node on my lung, which may either turn out to be cancerous or absolutely nothing to worry about. That is a wait and see game.

Right now, I have had three surgeries in three months and am about to begin external radiation therapy in the next couple of weeks. What surprises me is how much your life changes on a dime. I am a recently divorced, single mother of a five-year old; and up to this point, considered myself a very healthy vibrant woman. Now my life surrounds doctor's appointments, surgeries, calcitonin levels, tests, tests, and more tests.

Although this is still pretty new to me (diagnosed in January), there are some things that I have learned on this roller coaster ride. First of all, stay positive. Attitude encompasses so much of what we are going through. I am grateful and thankful that I am not in pain, and although my neck looks like the Bride of Frankenstein, the rest of me still works pretty well. Secondly, surround yourself with positive people. I have one friend in particular, whose primary job is to keep reminding me of the optamistic viewpoint, even when the news looks bad. Thirdly, find the best doctors you can. I have a team of physicians and health care professionals (surgeon, endocrinologist, radiology oncologist, counselor, and nutritionist) that are true angels. They do not hesitate to check on me and keep me informed of any new detail that arises.

I know that the battle is long and hard. It certainly doesn't help that this disease is so rare. But I have to believe that regardless of the diagnosis, staging, or prognosis statistics; we can get through this.