Well I am back and with new information.
Like I said from the very beginning of our diagnosis, I wasn't worried about chemo…I was worried about this gray period where we would decide if John needed retroperitoneal lymph node dissection (RPLND) surgery or not.
My last update, we had leaned that John's PET scans came back with a very small spot (2.3) that lit up. In fact, anything under 3 is most often benign. His lymph node shrank, but only about a third. Our doctor gave us two options, wait and recheck in 4 months or surgery. This is a pretty invasive surgery and our doctor told us if it were him, he would watch it. We agreed and left.
From the start, I have been reading the testicular cancer support forum and have gotten a ton of information from it. Personally, the more I found myself learning, the better I felt. I learned how treatable TC is, I could see what other spouses were going through, I could hear stories of the side effects of chemo, learn about the RPLND surgery, etc. I also saw time and time again, if someone had a question about their treatment or scans, people would always recommend Dr. Einhorn from Indiana. Supposedly, he would just email them back immediately.
You can google Dr. Einhorn and read about him for days. TC had only a 10% survival rate in the early 70's until Dr. Einhorn found that mixing Etoposide and Cisplatin (John's chemo drugs) together basically cured the cancer. Today at Indiana University in Indianapolis, there is a huge testicular cancer center and they have perfected the course of treatment. In fact, Lance Armstrong was told by his oncologists that his cancer could not be treated…he turned to Dr. Einhorn and his staff who completely healed him.
Back to that day in our doctor's office, I did not have a good feeling about John's results. And I wasn't happy. I kept telling him that I could've sworn I read that if his lymph node was still over 1cm, he needed surgery. I just decided maybe I had the numbers wrong. I also told John I wanted to email Dr. Einhorn but sat on that thought…
Until our friend/doctor texted John and said congrats on being done with chemo, but why not get a second opinion. I got on the TC forum that night and read (for the 100th time) posts and posts about consulting Dr. Einhorn. So Wednesday night (basically a day before we left for our no more chemo party in Nashville), I sat in bed at 11pm and emailed "The TC Doctor". I, of course, calculated every word I typed and added in the entire PET scan report. I mean what could it hurt to send someone an email?
Well turns out, the man is amazing and emailed me back within 12 hours. The only bad news was that it was the news I had expected, and we were leaving the next morning for a fun trip. (we were still able to have a fun time as you can see in the previous post)
I was at work when I opened his email. The first sentence he wrote was, "Your oncologist is wrong".
Not a good feeling, trust me. Ha.
He did make it clear that he thought nothing bad of our onoclologist, and was sure he was great…just not a specialist in TC. This is what happens over and over again. Just read the TC forums….read Lance Armstrong's book. Testicular cancer is so very different than most cancers. It is a germ cell tumor. It is rare. Most doctor's don't see many of these in their career.
It cannot be treated like other cancers. You actually do not need a PET scan after chemo. (and probably 90% of doctors would do one because it is standard in ALL other cancers) The chemo took care of the aggressive tumor (for sure), and your PET scan will show up clear (or good enough for surveillance). Most people I talked to would say if his PET scan lit up, it probably needed to come out. The PET scan meant nothing (except the measurement of the lymph node). Dr. Einhorn didn't even want to see the PET scan….he wanted a CT scan. He needs to know how big that lymph node is, what it looks like, and where exactly it is. John's is over 2cm and needs to come out SOON. Not even a close call, unfortunately. If that lymph node is over 1cm, surgery is needed.
It is very unlikely that it has aggressive cancer cells, but will probably reveal a slow growing component of the testes cancer (teratoma) and dead scar tissue. If teratoma is left, it can slowly turn into some bad stuff and will most likely be unresponsive to the chemo we previously used. This is no good. Surgery needs to be 4-8 weeks post chemo…which is NOW. We are on week 4.
So where are we today!?
John had a CT scan this morning. It is being overnighted to Dr. Richard Foster. He is Dr. Einhorn's urologlic surgical oncologist. (he also emails back immediately) Our doctor has sent all records to Indianapolis. As soon as Dr. Foster reads John's CT scan, we can schedule surgery. It is tentatively scheduled for April 15th. It will change if Dr. Foster feels he needs another surgeon in there with him (vascular surgeon or plastic surgeon). If other surgeons are needed, we will have to wait until all doctors are free on the same day. We will need to plan to stay a week.
RPLND surgery is no walk in the park, and I am not going to sugarcoat it. They cut you from your chest down past your belly button. It is dangerous and not done often (remember, TC is just not that common). There is only one or two doctors in Tennessee (East TN) that will even perform the surgery. That is why we are going to Indianapolis!!! They do them every single day. People fly from all over the world to have this done there. From everything I have read, the facilities and staff are amazing.
We are very confident in this decision. (but lets be real…John is NOT looking forward to it) I am happy to say this is almost all over! Of course we have one more giant leap, but it is much easier knowing we have the best doctors in the world on our team.
I will keep everyone updated on the surgery date and the logistics of it all.
It may be during Easter which will be so weird, but we need to do it as soon as possible. What an Easter Sunday that would be to be coming home to share with our sweet little boys and family that John is CANCER FREE.
Continue the prayers please. =)
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