Monday, June 23

My husband takes me to my appointment in Milwaukee and we meet some awesome doctors. The doctor believes I am in Grade 1. Not to be confused with stages. They won’t know what stage I’m in until they get in and see what they are working with and after they rest my lymph nodes. 

Their course of action was laparoscopic surgery of a full hysterectomy. They would inject a die in me and watch what lymph node the die touched first. That would be the one they remove and test. But there would be a good chance they would have to remove all 4 lymph nodes. If that happens, I would be very susceptible for lymphedema. Although cancer is very scary. Lymphedema is equally as scary for me. 

I went home and it wasn’t sitting well with me. So I emailed my nurse and questioned why they had to take all 4. Why couldn’t they just do a pet scan?  Here is her reply


Hi Jody,
 
Imaging is not great at picking up isolated cells in lymph nodes, even PET scans. Are you ok with doing sentinel lymph nodes (sampling the first draining lymph node)? It is thought that sentinel lymph nodes should result in less lymphedema risk since we are removing one node versus all the nodes in that area but we don't have qaulitative data on that.
 
Options that we would need to discuss prior to surgery would be:
-Plan to not take any lymph nodes
-Take only sentinel lymph nodes (if feasible)
-Or plan for sentinel nodes but if unable to get a good sample, then proceed with full lymph node removal on that side (this is what would be a standard recommended, if this is feasible-which we won't know until the time of surgery).
 
If there are findings or characteristics that are noted on the final pathology (higher stage, etc) that makes us think that you are at a higher risk of lymph node involvement, we will often discuss getting some imaging then but it still won't be able to tell us if there is small amounts of cancer in the lymph nodes. Scans are usually only good at picking up things that are more than a centimeter of disease.
 
Let me know if that doesn't make sense or if you have questions,
Kristen, PA-C

After a few days and throwing around this information in my head… I listen to some friends and decided to get a second opinion. I was given the personal number of a City of Hope patient navigator. The City of Hope was called once called Cancer Treatment Centers of America. It was a Saturday so I texted her and expected a text back Monday 

She was at an Indy car race but took time away from her family to text to me. We decided to talk in person Sunday and discuss things deeper. 

After our conversation I decided to get a second opinion with them. Best move I ever made…


 


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