We had no trouble finding the doctors office and we got checked in, went to wait and they took us right away. Answered like a million questions from the nurse and then saw Dr. Rand his research fellow Dr. G. We spoke with him for a long time. (like over an hour...)
He took a history and then looked at film, took the CDroms - and was going to get her OR slides and all that jazz.
We have three basic choices and he views his role as educated adviser. He can offer his opinion and guidance but mom is in the drivers seat. Only she can say what she is willing and able to endure.
The bottom line is the conventional treatment is not working. Her scans indicate that there is uptake of the Radiative Iodine - but that it is not having its intended effect. It should shrink or stop the tumor from growing. So it is absorbing the chemical - but the chemical is not having the intending consequence. The tumor is also taking up the glucose or sugar injected during the PET scan - which means the tumor is active and growing. Not a good sign. The Iodine should stop or slow the metabolic activity at the cellular level.
So we have three basic choices. We can do nothing (this one is hands down not recommended because the other two have a reasonable good success rate.)
Option A - Do an inpatient and concentrated dose of . They can target the tumors metabolically better. This has some major possible side effects and could damage her bone marrow or lungs. There are ways to mitigate those side affects but they also limit the effectiveness of the treatment. This is the general next step - but since Mom has already had a reasonably large dose of Radioactive Iodine, his feeling is we may want to save this until we really need it - and since it has been marginally ineffective before is it really the next step? He will know more once he has a chance to really study her file.
Option B - Test out and enter a trail of some Chemo - in pill form. They have some great new stuff on the market and just shy of coming to market drugs - which are exciting and seem to be effective - many of them have been approved for but seem to have the same desired effected or at least desirable effect in . The general feeling is these will slow the growth of the tumors for a unspecified period of time - then for reasons not yet known, somehow the tumor mutates and the treatment ceases to work. This tends to happen quickly.
The bonus is she does have a form of thyroid cancer(follicular) which is treatable. There is an extremely aggressive form - to which there is very little to be done. So while there is a form of thyroid cancer which moves like a speeding bullet train - Mom's is more like honey on a a fall day, slow moving.
He did explain that while there are treatments there is no cure. That we have made it him means we have past the point of cure. That it has spread post thyriodectomy means we are seeking an extension of quality and quantity of life. For many patients it can be 5-10-15 years before the treatment ceases to be effective. In others less than 5. In some cases even more than that. Each year brings new advances and new treatments. That is hard to hear - but then he says the interesting thing about thyroid cancer - more than just about any other one - is that for every patient it is different.
So he is going to get with his team and review her films and history - take a look at the and then we can get back together again!
She has a rare disease and and happens to live in a city with one of the only research centers for it. That is a blessing. While there is no magic bullet - it is nice to know that her disease can be studied and her experiences can lead them to new discoveries.
Overall I am impressed with his knowledge and his willingness to be candid and frank. He is clearly smart and I think the chain yanking and teeth pulling was so worth it to get into see him. He is out of network for Mom's insurance and it was a circus getting approval for this office visit.
Mom will be with us for a while I think and I know she is motivated within reason to keep on keeping on! It is a blessing that she will be moving closer - so that we can spend the time together. I also think if I can help her with the small stuff she can manage.
Overall it was a positive day - but I am very tired nonetheless. It is draining trying to keep up with the medical speak and the office hopping. Mom was tired too.
So that was us as we left the hospital complex. Hopeful, realistic and tired!