Various medical opinions...

I asked oncologist #2 about the report that she sent me last time. Here's her reply. "Yes - the report I sent you was about BOTH the cone and the polyp. They will clarify that on the report"

Strange, so oncologist #2's team and the rest of the world doesn't agree on the type of cancer it is...This could explain the difference in recommendation as oncologist #2 may have been working off of a different pathology report...

Here's my reply
"Thank you. It may be safer to operate on the basis of the adenosarcoma assumption for treatment decisions - it also seems to be the opinion of the other labs. No change to the step-by-step approach though. Except that now, I am very very confused..."

Here's something that I am learning slowly...Doctors have no clue for diseases that have not been well documented. They are the ones with the expert knowledge, the ones with access to all this research, the ones that can understand the "CD14 positive" type phrases. Yet, they all have conflicting advice and opinions...Even on the diagnosis...

Opinions range from:
- low metastatic potential, so trachelectomy now, no lymph node removal, a nice little MRI if margins are clear in 6 months, then a nice little pregnancy, then a hysterectomy
to
- radical hysterectomy now, slice of ovary for biopsy, lymph node removal in the pelvic area, adjuvant radio and chemotherapies, scans every 3 months for the first 2 years, then every 6 months for 3 years after that, then every year. Addtl scans for lung and colon cancer on a regular basis.

This from a breast cancer survivor I talked to:
"From everything I've read and asked, the benefits associated with chemo and radiation outweigh the risks. On the other hand, I have a friend that had breast cancer and she chose not to have any treatment and she's doing fine. It all boils down to risk -- it's a guessing game and there are odds associated with every move."
Except that in my case, the odds don't seem to be easy to calculate...

And this from an oncologist friend:
"You have clearly been seeing/speaking with lots of people and it seems you have felt comfortable with them. Liking and trusting your doctors is so important when fighting "aliens." From the e-mails you have sent, it sounds like all agree you ultimately need a hysterectomy/node dissection, and that all would probably favor sooner, rather than later, given the "unknowns and uncertainties" of cancer. The latter point, combined with the "rarity" of your typically slow growing disease, and it's apparent early detection, has at least allowed your physicians to entertain your desire to have a child. Did I get it right? I did speak with my
gyn colleague, who pointed out what you already know.
It sounds like you have a well thought out plan for trying a trachelectomy with close follow-up."

The "slow growing" part is because the docs have removed the main tumor and will remove the cervix which is where they believe the most aggressive part of the cancer has taken residence today. However, when margins are clear, you don't know if it was removed. And after a while, they will grow real fast (when they become bigger. My tumor was ~ 4cm, and there are 2 numbers that I have seen in literature. > 2cm and > 5cm. So I guess it was in-between).

How am I supposed to handle this? Take the most aggressive approach, even though the side effects are probably more serious because in doubt, it might still be the safest option?
One thing is sure. A side effect of being diagnosed with cancer - especially rare ones - is a fairly constant headache.

I had three voicemails yesterday/today.
One from my insurance company with a number to call back. The message just says - this is not urgent and please call back this number. Strange. First time I ever get a call from them.

Second voicemail was from from oncologist #3. She doesn't feel like she can answer my "if I were your daughter what would your recommendation be" question because she feels that she would be overly biased and give me an irrational and inappropriate answer. She said that she would want to protect her daughter and be overly conservative. She believes in informing the patient and make sure that she supports their decision with all the medical knowledge she can bring. She thinks that I should be comfortable with my decision and do what I feel is right for me. She believes that I am aware of the issues and she feels confident that I will be able to make a good decision. She will make herself available to talk more about this if I so wish or have second thoughts about my decision (to zip through a pregnancy).

The third one was from my mom. She'd like to talk about when she can come over...which is the last thing I want I think. So I guess that I'll have to say that.

Anyway, let's focus on the essential for now: enjoy your weekend! I will!