Mike and I moved out to Kansas City in July, the day after I finished my last treatment and removed my port. We were excited for this new chapter in our lives and were ready to start new and to move on. We started doing follow up with Dr Ernst who is a heme/oncologist and this consisted of just monthly lab draws to make sure my HCG level (tumor marker) was still at zero. In October I received a call from him saying that my HCG level was at 16. My heart dropped as I thought to myself "is this really real life right now?". We decided that I would need to get a CT scan done to just make sure nothing had spread outside of my uterus. Scans all came back normal. Dr Ernst decided to get a second opinion from Dr Jewell who is a gyn oncologist and we will be forever grateful that he did this.
Since my levels were so low and were staying low, Dr Jewell wanted to just watch my levels and see what would happen. She said sometimes when they see low levels that aren't really doubling fast they will eventually go away by themselves. Eventually meaning months to years. So thats what we did, we watched my levels and they slowly kept going up. Once we saw the trend of them going up and not really stopping or plateauing, we knew this was probably not going to go away on its own. In between all of this I had more labs done and imaging done and in all my scans they could not see where these group of cells or tumor was that were causing my HCG to go up. They decided I should have a D&C to clean out my uterus and maybe that would help so we did that and that didn't do anything. So, I did more imaging. Recently, I had an MRI done and they think they have found where the tumor is in my uterus. So now what? Well, the problem is, my levels are going up but they aren't going up fast enough to where Chemotherapy will actually work. If cells aren't multiplying and dividing fast enough chemo just doesn't do the trick. If I were to do chemo right now, nothing would happen. There might be an option to try and do surgery and take out that part that they found but it could end in having a hysterectomy if something went wrong during surgery, or my uterus just wouldn't be as strong and may affect being able to carry a baby to full term in the long run but nothing has been decided right now. Either we will just have to wait until my HCG levels decide to multiply and start going up like crazy to start chemotherapy or we will try surgery. Both have pros and cons and we have no idea what we are going to end up having to do.
Dr Jewell Recommended that we should probably do egg retrieval and make some embryos, in the case that I do need chemotherapy, then I will still have an option to have kids in the future. With chemo you never know how it will have an affect on your fertility. Mike and I both felt really good about this and felt like it was the right thing to do. So that is what we are doing as of now getting these eggs out and making babies. :) I have another MRI scheduled to make sure it is consistent with the other one and then we will talk about what the next step is for me and what the best option is.
It has taken awhile to even mention this to anyone besides our family, because we're pretty much in denial that this was actually happening. That the 4% chance of this coming back was actually happening to me. But what can you do? We try to move forward with positive thoughts and we do know that everything will all be ok one of these days! We decided it was time to let all our friends and those around us know what is going on because it is a big part of our life right now and many of you have followed us on this journey and it is time to stop being in denial. :)
Thats all that is going on, we will update when we know exactly what the next step is for me :)
Mike & Amy
P.S. For the medically savvy it was originally diagnosed as Quiescent Gestational Trophoblastic Disease but now is Minimally Invasive Gestational Trophoblastic Disease (Neoplasm)
