Egg Retrieval and Recap for New Readers
Welcome new Alien fans
You can browse through the blog to get more background on what's been happening but here's in a nutshell the timeline of recent events PRIOR to what's on the blog.
I had been experiencing irregular bleeding and had seen my OB/GYN about 5 times at regular intervals about that. First, it was thought to be an infection so I was treated for that (looked inflammed, kept bleeding as soon as they would touch it). We did a special PAP test and it came back negative. Etc...Toward the end, it was so bad that when I was asked "when was the first day of your last period", I couldn't answer because I couldn't tell the difference between normal and abnormal bleeding...
Finally, since nothing seemed to work (and it could be a million thing), the OB/GYN ordered an ultrasound (months after my first visit). The ultrasound did show a mass (pretty big by polyp standard, ~ 5 cm) in the uterus (bottom, top of cervix).
The day of the ultrasound, I get a call from my OB/GYN who says: we think that we have found the cause of your bleeding. Looks like it's a gigantic polyp. So if we remove it we should be fine.
Polyp is removed. Right after the surgery I get a call from my OB/GYN.
"I removed that small mass in the uterus but I found something totally strange too. It's huge and I have never seen anything like it before. I took a sample and sent it to the pathology lab. Hopefully, they'll be able to tell us what it is. We should have the results in two weeks"
2 weeks later: no results available when I go for my post-op check up. OB/GYN checks with the lab and calls me with the weirdest story of all.
- "OK, so the lab isn't 100% sure of what it is, so they sent it to an expert at Harvard Med School for a second opinion"
- "and what are the options they are hesitating between?"
- "No, it's so rare that I really don't think that it is really possible so let's not talk about this"
- "I insist" - it took me three phone calls to get her to say
- "OK, they are hesitating between a benign tumor or a malignant sarcoma"
- "And why is it so difficult to tell?"
-"Well, sarcomas are really rare, start in the gland but half of the tumor is benign and the other half is very malignant so they are often mis-diagnosed is the sample contains the benign portion"
2 days later, I learn that the Boston specialist of soft tissue tumors has sent a report back "cancer" - he also chose that time to disappear for 2 weeks on vacation and was not available for comments.
The city lab still didn't want to believe it (50% of the people there thought that it was sarcoma and 50% thought that it was benign) so they also send it to another local hospital that says "we don't know". The city lab puts "cancer" in the report. I actually had to speak directly with the MD heading up the lab because I still couldn't get a response. This took over a month...
Meanwhile, I am wondering whether I have cancer or nothing :)
My OB/GYN calls after I got these results:
- "OK, so looks like it's cancer even though there's no consensus. However, everyone thinks that it should be removed so let's go ahead and schedule that operation. And let's do a CT-Scan/MRI (better for soft-tissue) including one with contrast prior to the surgery to make sure that we remove it all"
- A few days later, I am put on emergency schedule for an MRI at UCSF. I stayed in that stupid machine for TWO hours (with an IV in my arm for the contrast solution). My legs were so numb after that!
- I get a call that same evening from the doctor:
"- I can't just go ahead and remove this. This is all over your cervix, up the cervical canal into the uterus. If we remove this, your cervix has to go and potentially some of your uterus. I am going to refer you to a GYN oncologist. He can see you next week."
Oncologist #1 reads the two reports that say cancer and tells me "I am not sure it is cancer. Or if it is it's probably so early that we can just wait and see, and manage the growth with some drugs. Let's do a scan every month and see how fast this thing grows"
Next scan: "Mass identified on the inside of the cervix, marginally smaller than the original mass after partial removal"
Exam after the result of the scan and comment from the oncologist #1: "Hmmm, I can feel the tumor with my fingers, it's probably about golf ball size. It has grown much faster than I had anticipated. Let's schedule a conization of the cervix, which is a partial removal of the cervix and see if I can get it out"
My OB/GYN doesn't understand how that can work...
Meanwhile, my"case" is being discussed at various tumor boards. They all say it's cancer.
I finally have the operation (this is one of the first posts on this blog) -
- a) it is cancer
- b) it is super rare and they have no clue
- c) it is early stages but they aren't sure about how this will develop since there's no data and apparently it can mutate into all sorts of monsters
- d) margins were not clear (eg still cancer cells in there)
- e) there's only one solution: a hysterectomy potentially with chemo/radiation
****************************
This !$)^#%^)&*@#)( cat has peed on my spinnaker bag.
OK, took another of those round pills, got myself a nice filling little dinner and I am drinking a ton of water. Most importantly, I will take what I will sorely be missing for a couple of weeks: a HOT BATH!!
*****************************
I just went over that consent document for egg freezing. Basically, this is so rarely done that it is still a research study. They accept only two new people into this study every month and give priority to cancer patients wishing to preserve fertility. Also true of ovarian tissue (if they ever have to remove them) and because only 2 pregnancies have worked with this solution, the storage is free for this (for embryos/oocytes, it's about $350/yr)
So by signing this form I am consenting to be part of this research study.
It is also specified that if at any time, research shows that there is a risk in keeping those eggs (probably to the future baby I would think), then they will notify participants in the research.
Whenever something like this happens (or when I turn 50), I can choose to have the eggs donated to research or discarded. I opted for the former. Might as well be useful to someone else!
So I was already asked to be a research case for the tumor itself and now I have just enlisted into a research program for fertility preservation with cryo-eggs :) Cool!
*********************************
Assuming that one needs 2 eggs and 250g of flour (+ some sugar, oil, etc...) to make some wonderful crepes for 8 people, how many people can we feed on my SEVEN eggs????
Everything went well at the retrieval procedure. Feeling a little groggy still :) I spoke with the doctor and she doesn't believe that the quality of the eggs is good enough to freeze them as eggs. So they will all be frozen as embryos.
Which simplifies greatly the problem stated above!!! None!!!!
You can browse through the blog to get more background on what's been happening but here's in a nutshell the timeline of recent events PRIOR to what's on the blog.
I had been experiencing irregular bleeding and had seen my OB/GYN about 5 times at regular intervals about that. First, it was thought to be an infection so I was treated for that (looked inflammed, kept bleeding as soon as they would touch it). We did a special PAP test and it came back negative. Etc...Toward the end, it was so bad that when I was asked "when was the first day of your last period", I couldn't answer because I couldn't tell the difference between normal and abnormal bleeding...
Finally, since nothing seemed to work (and it could be a million thing), the OB/GYN ordered an ultrasound (months after my first visit). The ultrasound did show a mass (pretty big by polyp standard, ~ 5 cm) in the uterus (bottom, top of cervix).
The day of the ultrasound, I get a call from my OB/GYN who says: we think that we have found the cause of your bleeding. Looks like it's a gigantic polyp. So if we remove it we should be fine.
Polyp is removed. Right after the surgery I get a call from my OB/GYN.
"I removed that small mass in the uterus but I found something totally strange too. It's huge and I have never seen anything like it before. I took a sample and sent it to the pathology lab. Hopefully, they'll be able to tell us what it is. We should have the results in two weeks"
2 weeks later: no results available when I go for my post-op check up. OB/GYN checks with the lab and calls me with the weirdest story of all.
- "OK, so the lab isn't 100% sure of what it is, so they sent it to an expert at Harvard Med School for a second opinion"
- "and what are the options they are hesitating between?"
- "No, it's so rare that I really don't think that it is really possible so let's not talk about this"
- "I insist" - it took me three phone calls to get her to say
- "OK, they are hesitating between a benign tumor or a malignant sarcoma"
- "And why is it so difficult to tell?"
-"Well, sarcomas are really rare, start in the gland but half of the tumor is benign and the other half is very malignant so they are often mis-diagnosed is the sample contains the benign portion"
2 days later, I learn that the Boston specialist of soft tissue tumors has sent a report back "cancer" - he also chose that time to disappear for 2 weeks on vacation and was not available for comments.
The city lab still didn't want to believe it (50% of the people there thought that it was sarcoma and 50% thought that it was benign) so they also send it to another local hospital that says "we don't know". The city lab puts "cancer" in the report. I actually had to speak directly with the MD heading up the lab because I still couldn't get a response. This took over a month...
Meanwhile, I am wondering whether I have cancer or nothing :)
My OB/GYN calls after I got these results:
- "OK, so looks like it's cancer even though there's no consensus. However, everyone thinks that it should be removed so let's go ahead and schedule that operation. And let's do a CT-Scan/MRI (better for soft-tissue) including one with contrast prior to the surgery to make sure that we remove it all"
- A few days later, I am put on emergency schedule for an MRI at UCSF. I stayed in that stupid machine for TWO hours (with an IV in my arm for the contrast solution). My legs were so numb after that!
- I get a call that same evening from the doctor:
"- I can't just go ahead and remove this. This is all over your cervix, up the cervical canal into the uterus. If we remove this, your cervix has to go and potentially some of your uterus. I am going to refer you to a GYN oncologist. He can see you next week."
Oncologist #1 reads the two reports that say cancer and tells me "I am not sure it is cancer. Or if it is it's probably so early that we can just wait and see, and manage the growth with some drugs. Let's do a scan every month and see how fast this thing grows"
Next scan: "Mass identified on the inside of the cervix, marginally smaller than the original mass after partial removal"
Exam after the result of the scan and comment from the oncologist #1: "Hmmm, I can feel the tumor with my fingers, it's probably about golf ball size. It has grown much faster than I had anticipated. Let's schedule a conization of the cervix, which is a partial removal of the cervix and see if I can get it out"
My OB/GYN doesn't understand how that can work...
Meanwhile, my"case" is being discussed at various tumor boards. They all say it's cancer.
I finally have the operation (this is one of the first posts on this blog) -
- a) it is cancer
- b) it is super rare and they have no clue
- c) it is early stages but they aren't sure about how this will develop since there's no data and apparently it can mutate into all sorts of monsters
- d) margins were not clear (eg still cancer cells in there)
- e) there's only one solution: a hysterectomy potentially with chemo/radiation
****************************
This !$)^#%^)&*@#)( cat has peed on my spinnaker bag.
OK, took another of those round pills, got myself a nice filling little dinner and I am drinking a ton of water. Most importantly, I will take what I will sorely be missing for a couple of weeks: a HOT BATH!!
*****************************
I just went over that consent document for egg freezing. Basically, this is so rarely done that it is still a research study. They accept only two new people into this study every month and give priority to cancer patients wishing to preserve fertility. Also true of ovarian tissue (if they ever have to remove them) and because only 2 pregnancies have worked with this solution, the storage is free for this (for embryos/oocytes, it's about $350/yr)
So by signing this form I am consenting to be part of this research study.
It is also specified that if at any time, research shows that there is a risk in keeping those eggs (probably to the future baby I would think), then they will notify participants in the research.
Whenever something like this happens (or when I turn 50), I can choose to have the eggs donated to research or discarded. I opted for the former. Might as well be useful to someone else!
So I was already asked to be a research case for the tumor itself and now I have just enlisted into a research program for fertility preservation with cryo-eggs :) Cool!
*********************************
Assuming that one needs 2 eggs and 250g of flour (+ some sugar, oil, etc...) to make some wonderful crepes for 8 people, how many people can we feed on my SEVEN eggs????
Everything went well at the retrieval procedure. Feeling a little groggy still :) I spoke with the doctor and she doesn't believe that the quality of the eggs is good enough to freeze them as eggs. So they will all be frozen as embryos.
Which simplifies greatly the problem stated above!!! None!!!!
posted by Finance Monkey at 10:20 AM
0 Comments:
Post a Comment
<< Home