CT scans are in, lower lymph nodes enlarged but no evidence of cancer in other organs

[Danielle18]

Hi all,
I just posted not too long ago about the results of the orchiectomy, which was "testicular teratoma with focal intratubular germ cell neoplasia", along with "Teratoma with a secondary somatic-type malignant component: Endodermal teratoma with mature appearing epithelial lining". We received the results of the CT scan today, which indicated that there were at least three enlarged retroperitoneal lymph nodes, so it looks like the RPLND is happening at the University of Michigan. Anyone have any idea how long we will have to wait to hear when that will happen? Also, any advice?
Thank you so much.

[dcnovachris]

Hi Danielle - I'm sorry to hear about the enlarged nodes, but find comfort in the fact that you now have a full diagnosis and can move forward in successfully treating the cancer. It may not seem like a silver lining at this point, but you're on the road to the cure. My case is very similar in that I also had 3 enlarged nodes that showed up on the CT scan. When meeting with both surgical and medical oncologists, they recommended that the RPLND be performed within 6-8 weeks of my post-I/O CT scan. This recommendation was based primarily on empirical data for tumor growth rates and the potential for new tumors to appear. Since the staging depends on both tumor size and quantity, it's possible that new tumors can appear and eliminate the RPLND as a first-line treatment option. My RPLND took place ~6 weeks after my scans and 34 nodes were removed. Only 2 of 3 nodes identified on the scans had any cancer, which I was told up front that there was ~25% chance that the RPLND would show no cancerous nodes. It's a tough call to make, but one I feel very comfortable with given that I am just over 1 year all clear and have thus far been able to avoid chemo.

If I could give you one piece of advice, it would be to seek surgical treatment at the hands of a high-volume surgeon. Since the RPLND is based on a template (i.e. exact number and location of lymph nodes varies per person), no amount of textbook knowledge can be substituted for the eyes and hands of someone who performs this procedure regularly. A high-volume surgeon would be one who performs this procedure weekly (or several times per week) as opposed to every few months or a few times per year. The two high-volume surgical centers most frequently mentioned on this site are MSK and Indiana University.

Please feel free to contact me at [email protected] if you have any questions at all about the procedure.