Today I met with the surgeon who performed my excision surgery back in early July so he could see how things were healing up and address any questions I had. Since I have so far been unable to get adequate answers about the human lymph system from medical personnel (or the internet), I decided to try my luck asking the surgeon for a layman’s description of my lymph node biopsy results.

I asked him to explain how lymph nodes are arranged in the body. He explained that they are not necessarily in a specific order and they are kind of bunched up with the possibility of more than one being connected to each other. He also said that although he would love to tell me finding cancer in one node and not the other means that it was only in the “first” node, that is really not the case. Since the nodes are clustered and generally there is a primary, but there is not necessarily a defined order after that, more than one lymph node could count as a secondary node. This is why the oncologist wants me to have the PET scan next week, so they can see if there are any more lymph nodes with cancer in my leg (or any further into me.)

The surgeon also mentioned that if they find more cancer cells, they may go in and remove all the remaining lymph nodes in my leg. I asked him if this would cause more of the swelling (lymphedema) I’ve been dealing with since losing the two nodes they removed during surgery, and his answer was yes. So I followed up that question with “Do lymph nodes grow back?” to which his answer was (his words, not mine):

“No, they will never grow back and if we take the rest of them out you will have horrible swelling in your leg for the rest of your life. Additionally, your immune system on your right side will be permanently compromised.”

This is pretty terrible news for me… With only two nodes removed, I was barely able to move my toes due to the excessive amount of swelling I had until my system was thankfully able to mostly recover and “redirect” itself through the remaining lymph nodes. With the removal of the remaining eight nodes and subsequently no chance for recovery from the then guaranteed severe lymphedema, it appears this procedure, if done, would be permanently debilitating.

Now I am really hoping this removal procedure is not something they end up recommending because I absolutely cannot go through with that option, no matter what. I cannot become an invalid, unable to walk and move around on my own or even drive. I would become a constant and huge burden to my family for the rest of my life, no matter how long (or short) that is. I just can’t. I’m sorry. I know how that sounds and what it implies, but I have no savings, no medical insurance, no 401k, etc., and if I end up no longer able to go to work, I’ll have no way to provide for my family while they are trying to take care of me.

We met with an oncologist today. We discussed what treatment options might be available to me, and she also set up a PET scan for me in two weeks. The scan is basically to see if any cancer cells have spread beyond the single lymph node they found cancer in when they did the biopsy following my excision surgery in early July.

I was not really impressed by this doctor and I’m not sure she’s going to be a good fit for me.

• She doesn’t seem to have a good handle on her own schedule.
  • She expressed concern as to why we had waited a whole month to see her for this first visit… we hadn’t waited, it was just the first available spot in her schedule.
  • She also scheduled us to come back in two weeks and then one of her desk staff complained to us under her breath while scheduling the follow up visit (which could not be scheduled for at least three weeks) that this doctor frequently tells people to come in on a date when there are no openings in her schedule and often are no openings for sometimes several weeks after that.
• I also had a very difficult time communicating with her because English is not her first language and I don’t personally have the conversational skills needed to work through that kind of language and cultural barrier.

Basically, I’m not going to be comfortable working with any doctor if we cannot communicate easily and effectively. I guess for now we’ll get the scan, talk to her again after she sees the results, and then proceed from there.