Oncologist #3

Some friend have referred me to oncologists. Given the main characteristic of this particular tumor (eg. rarity), I am certainly interested in getting more than one opinion!

However, some set the bar really high in terms of remuneration...Quoting from an email

"I'm sorry to hear about your friend. She has a form of uterine mixed mullerian tumour which I have seen only a few times in my career. The last lady with an MMT that I looked after was a concert pianist, and she gave me a recording of Rachmaninov's 2nd Piano concerto."

Not sure how I can beat this...

I slept all day and I am feeling great!



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My REI clinic's favorite nurse just called to make sure that I was OK and to give me an update on my "cryopreservation" report.

They harvested 7 eggs.
Out of those 7, 1 fertilized beautifully and was frozen as an embryo
4 fertilized but so so (the nurse said that they were slow) and didn't display a 100% healthy behavior. Still they were frozen as embryos. They may not be viable though.

The others did not fertilize and were discarded.

I was also reading about this clinic. They really have a special program for cancer patients who face fertility issue (either because their cancer is a GYN cancer or because they need to have radiation). Apparently, less than 20 people in this case were treated by the clinic. They short-circuit their usual waiting lists for these patients. I feel SO fortunate!!!

I might have to go back to this clinic after the trachelectomy...


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I had an appointment today at 1pm at another Cancer Center:

Initially, I had been referred there but after a week of daily calls that never got returned, I ended up with Oncologist #2. So today's visit was a fun one.

First you talk to an intern, (super nice and apparently, very involved in volunteer work, we could almost be friends :)) - and then The Dr. comes in.
She is a lot of fun. I liked her a lot! And she had this really inquisitive way to look at me without saying anything...

First she asked me why I went to that other center. I had to smile and said that I would have loved to have been given the opportunity to try her first...Then she said, "OK, I'd better beat them with the options that I can offer. Let's see what we're talking about here."

Here's her reaction when I expressed my desire to carry a pregnancy:
- "you're definitely young. Who would want to maintain the privilege of going into labor at all cost..."

It is interesting how much doctors trust other medical center's labs.
"well, I really want to have our pathologist look at the slides. I will work off of their report"

She looked at the original Harvard report as well who indicated a slightly different type of malignancy, one that has an even higher rate of recurrence and that is very unstable. She was worried about that.

"Also, I want to discuss this at our tumor board (YAY! Another one!!), as this is a complex case and a lot is at stake. I will also go back to articles I have read about this type of tumor, there aren't that many but hopefully, I'll find some data I can use"

Anyway, I will spare you the details of a full exam (apparently, a breast exam is necessary when you come in for cervical cancer...) and offer the conclusions of this visit.

- My next appointment is in two weeks, right after the tumor board meets. It's a day when this Dr. usually doesn't see patients.
- This type of tumor never arises in the cervix, in the few rare cases of Mullerian Mixed Tumor (is this another name for it???), it arises in the uterus. So chances that this is also in the uterus are extremely high in her opinion
- A hysterectomy will be the only solution she will feel completely comfortable with
- Post-hysterectomy, she will want regular MRI to monitor the ovaries and the rest of the reproductive tract.
- She doesn't believe that the lymph nodes need to be removed at this stage (with the trachelectomy) since it is early stages. Maybe with the hysterectomy if it is done later.
- A trachelectomy now is betting that the tumor will behave like the slides suggest it would (eg, grow slowly again over the next year or so), but she said that it's a very uncommon tumor at a very unusual location and I might not fit the "general" population profile, so data might not be so useful for me
- She guessed (right) that most doctors can't give me certainty, even with a hysterectomy. She said that's because of the nature of the tumor.
- It can be "pesty" and often recurs
- she's confident that the cancer can be treated at this early stage. She said that with GYN cancers, before they spread, they have nearly 100% cure rate because they are operable. With sarcoma it's not 100% but it's above 50.
In my case, they won't remove the ovaries so there's a small chance that some cancer cells will be left hence the monitoring but she feels pretty good about that. (eg that it will be caught early enough if it develops there and will be treatable). Given the chances, she doesn't want to remove my ability to have biological children on the off chance that there's something there. She doesn't believe it's justified (which I was very pleased to hear as you can imagine!)
- There's a 70% success rate in getting pregnancy after a trachelectomy but very few will reach full-term and not everyone will pass the 32 week point...
So leaving the uterus in does not guarantee a successful pregnancy and a cute baby (whereas, removing it does guarantee no pregnancy at all :))
- Doing nothing is not an option. There's enough cancer cells left in the cervix to give me a lot of trouble. So a trachelectomy is the very minimum I asked what would happen if I decided to wait before I complete a pregnancy before doing a trachelectomy and she replied: "you'd die. your call. Oh and I'd look ridiculous because I'll have to beg you to allow me to convince you that at the very least you need a trachelectomy"

After I left, they gave me a sheet to hand out to the check out person. It's a diagnosis sheet for my charts. It says

"Comprehensive examination"
"Cervical/Uterine malignancy"
and next to "medical decision" it had "highly complex"

Note that the complexity of the decision is in no way related to survival rates.
My case is not an urgent case of phase IV cancer. However, in some more serious cases, they may not hesitate about what to do.

Lol :)

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Oncologist #3 was really upset at the fact that I didn't get an appointment the first time around. "I know your OB/GYN - very well and if she refers a patient to me I want to be available for that person"

She asked for more detail but I replied that I didn't really want to get anyone in trouble so that it was better to leave it at that. We are now talking which is the important thing.

After we resolved the medical matters - that is did not resolve the situation at all - the Dr came back with the Practice Manager.
She said that even though I didn't want to get anyone into any kind of trouble, she would really appreciate if I could work with her to make sure it wouldn't happen again."

So the manager and I had a little friendly chat that sounded like a police interview. She wrote down all my answers into a notebook.
"When was the first time you called?"
"How many times did you call? how many times/day?"
"which number did you call?"
- the one with the voicemail that said, you have reached the line for Dr.... -
"How long was it after we returned your call?"
- no one returned my calls -
"So how did you get this appointment today?"
- through a friend's sister who works here -
etc...

Before she left, the manager gave me her card and said: "Here's my phone number and my email address. If you ever have any problems getting appointments at the cancer center, call me direct."

Then, Oncologist #3's practice assistant and who called/emailed me to make this appointment came in, gave me her card with her direct line and said: "Call me whenever you need to see Oncologist #3, I will personally make sure that you get on her schedule".

Well, well, well...I feel super important now...