The Flea Cancer
I spent a few hours this morning at a local and renowned Cancer Center, an expensive piece of real-estate with an obvious parking problem. Talking to Dr H. there was extremely helpful (finally someone who doesn't draw a uterus that looks like a lightbulb!! I could almost believe that she'd be able to recognize it in a human body)
I have learned a lot about GYN cancers this morning - there are a lot of numbers in this email. If you'd like a book with more images, please go to www.images.google.com every few minutes for a nice interlude.
The oncologist said that the most common type of uterine cancer is squamous cell cancer. This cancer invades progressively (eg, if you remove the area and the margins are clear, eg no sign of cancer, then it means that you got it all). This type of cancer can be detected by PAP tests and when detected early only requires surgery. If I had this type of cancer, she would be happy with removing only the cervix and a wait and see approach.
(do I sound like a rocket scientist?)
The second most common type of uterine cancer is adenocarcinoma - this usually originates in the glands that are located throughout the cervix. The cancer will spread around quicker than squamous but it will go from A to B to C. Because it is more aggressive in general, a hysterectomy is performed in most cases and radiation/chemo is added only if the cancer is already quite advanced. Surgery is usually enough for the great majority of cancer since this type of cancer can be detected by PAP tests.
The most rare type of cancer is sarcomas. The most rare type of sarcoma is adenosarcoma (and the ones that start in the cervix are virtually unseen). They are called mullerian adenosarcoma (that's what I have!). Let's take a look at some more numbers: Adenosarcoma is a variant of mixed mullerian tumors of the uterus. Sarcomas in the uterine cervix are rare, comprising 0.5% to 1% of all cervical malignancies. Uterine sarcomas make up 2% to 3% of malignant corpus tumors, whereas mullerian adenosarcomas are observed in 8% of uterine sarcomas. Oh and the median age for diagnosis is 37, most reported cases are for women aged 40+. In fact it is so rare, that the oncologist would also like to present my case to the center tumor board (hehe :))
Now that we are all certain that I am an extremely rare specimen, worth conserving at all cost (in fact I wonder if I shouldn't ask doctors to pay for the benefit of working on my case), here's where we can go from there.
Sarcomas are special cancer in that they touch both the glands (in cervix/uterus) and the muscle tissues (linen, and everywhere). They originate in the gland but the glands themselves tend to be benign. The sarcomatous part is much more aggresive though, and it is not uncommon for sarcomas to mutate into dual tumors (adenosarcomacarcinoma) . Also, they can "jump" places. So you can find cancer cell at the bottom of the cervix, then no cancer cells, and a few at the top of the uterus as the cancer spread. As a result, removing part of the cervix EVEN with clear margins (eg, no cancer cells for 1-2 cm around the tumor) doesn't mean that the cancer was removed. In my case, there was no clear margin (eg, cancer cells were found at the boundaries which means that there are 99% chances that there are still many cancer cells in the cervix - the latest scan didn't show clear boundaries either meaning that the cancer goes deeeply into the tissues. Upon exam, my cervix looks way too firm for being normal. So as a very minimum, this oncologist said that she would definitely remove the cervix completely.
Now, if she does this, because she would not be sure that there are no cancer cells left in the uterus, she would order radiation and possibility chemotherapy (although sarcomas are known not to respond very well to some chemo treatment, so she would always double up with radiation). She would also have me constantly monitored. So I can lose my cervix, keep my uterus and lose my ovaries. She also said that if I were to try to carry a baby with no cervix, I would have a 30-40% chance of losing the baby (eg not complete the pregnancy), and this will go up with age.
She said that the recommended treatment is hysterectomy because it is uterine cancer (eg, it could affect all the uterus for all she knows, it does not have to show visible tumors). If she does this, she would probably feel comfortable not removing the ovaries because there's only an 8% chance that they are affected (although it's the next level up). If upon biopsy, the uterus shows a lot of cancer cells, she will probably order radiation/chemo and want to remove the ovaries. To be conservative, she would recommend to remove them, which is actually the standard procedure for tumors that are bigger than 2cm (my case, was double that size and 3 after partial removal)
Now if she does this: harvesting eggs and freezing them is possible (and they stay the age they were when they were harvested) but chances to have a successful fertilization is very small. Freezing embryos has a higher chances of success but not that high (so I'd have to have quite a few in reserve...
To help me make those decisions, she has referred me to the endocrinologist/fertility doctor across the road - another expensive piece of real-estate with even less parking.
She said that there is also a slight possibility that the sarcoma has gone extra-uterine. It's small but not zero. That's because of this A to C jumping B thing. So in any case, she would want to have me monitored closely. This is also why in tumors that are bigger and higher grade sarcomas, radiation/chemo is usually recommended even after surgery.
At this stage, she believes that there is a strong chance to cure the cancer (although it could recur for example in the vagina). She needs more data but she'd say 90% with complete removal (including the ovaries). She wants the local pathologist lab to look at the slides (sample from the biopsy) to confirm the sarcoma diagnosis and make sure it's not another type of cancer.
Hormonal changes and genetics don't seem to affect sarcomas that much (they are quite happy to develop on their own apparently) but she said that there was so little to work with that no doctor will want to make a call on this. In any case, she would not recommend a pregnancy because I have a life-threatening disease and until it is cured, I might be making a decision to bring into the world an orphan. She said that definitely in a year from now, it would be super hard to tell what can happen. So she has no idea about a timeline. The tumor is pretty big and I had experienced the symptoms for several months (there are symptoms only for advanced sarcomas) -
And the reason why they are hard to detect via PAP test is because the small area of the PAP swab may contain zero cancer cell since it is a heterogenous tumor, but everything else could be affected...Biopsy of the tumor itself is the only way to diagnose this type of cancer. She did say that I was very lucky to have found the tumor "by chance" a lot of people don't find out about it until very advanced stages.
This cancer doesn't metastase as quickly as some more aggressive forms of cancer (that's good news) but as they are non linearly invasive cancers and don't respond well to some kind of chemotherapy, they are hard to treat. Also once they get to another organ, they can mutate and start to metastase quite happily, or remain undetected unless they are too advanced to be contained with surgery only. Also, they are unknown entities, little data, high mutation rate and they become more and more aggressive as they grow (ultimately spreading like all the other types of cancer). However sarcomas of the uterus that have spread outside of the uterus also have extremely poor prognosis.
So she said even with surgery, there would be no guarantee that I would be cancer free, just a high chance. She would still want me to have regular checks up every 3 to 6 months (MRI) for 2-5 years. then at least once a year.
I obviously don't know anything about sarcomas, so all of this is my understanding of today's visit...
ps: Adeno means that it starts in glands
Until next time!
Until next time!
I have learned a lot about GYN cancers this morning - there are a lot of numbers in this email. If you'd like a book with more images, please go to www.images.google.com every few minutes for a nice interlude.
The oncologist said that the most common type of uterine cancer is squamous cell cancer. This cancer invades progressively (eg, if you remove the area and the margins are clear, eg no sign of cancer, then it means that you got it all). This type of cancer can be detected by PAP tests and when detected early only requires surgery. If I had this type of cancer, she would be happy with removing only the cervix and a wait and see approach.
(do I sound like a rocket scientist?)
The second most common type of uterine cancer is adenocarcinoma - this usually originates in the glands that are located throughout the cervix. The cancer will spread around quicker than squamous but it will go from A to B to C. Because it is more aggressive in general, a hysterectomy is performed in most cases and radiation/chemo is added only if the cancer is already quite advanced. Surgery is usually enough for the great majority of cancer since this type of cancer can be detected by PAP tests.
The most rare type of cancer is sarcomas. The most rare type of sarcoma is adenosarcoma (and the ones that start in the cervix are virtually unseen). They are called mullerian adenosarcoma (that's what I have!). Let's take a look at some more numbers: Adenosarcoma is a variant of mixed mullerian tumors of the uterus. Sarcomas in the uterine cervix are rare, comprising 0.5% to 1% of all cervical malignancies. Uterine sarcomas make up 2% to 3% of malignant corpus tumors, whereas mullerian adenosarcomas are observed in 8% of uterine sarcomas. Oh and the median age for diagnosis is 37, most reported cases are for women aged 40+. In fact it is so rare, that the oncologist would also like to present my case to the center tumor board (hehe :))
Now that we are all certain that I am an extremely rare specimen, worth conserving at all cost (in fact I wonder if I shouldn't ask doctors to pay for the benefit of working on my case), here's where we can go from there.
Sarcomas are special cancer in that they touch both the glands (in cervix/uterus) and the muscle tissues (linen, and everywhere). They originate in the gland but the glands themselves tend to be benign. The sarcomatous part is much more aggresive though, and it is not uncommon for sarcomas to mutate into dual tumors (adenosarcomacarcinoma) . Also, they can "jump" places. So you can find cancer cell at the bottom of the cervix, then no cancer cells, and a few at the top of the uterus as the cancer spread. As a result, removing part of the cervix EVEN with clear margins (eg, no cancer cells for 1-2 cm around the tumor) doesn't mean that the cancer was removed. In my case, there was no clear margin (eg, cancer cells were found at the boundaries which means that there are 99% chances that there are still many cancer cells in the cervix - the latest scan didn't show clear boundaries either meaning that the cancer goes deeeply into the tissues. Upon exam, my cervix looks way too firm for being normal. So as a very minimum, this oncologist said that she would definitely remove the cervix completely.
Now, if she does this, because she would not be sure that there are no cancer cells left in the uterus, she would order radiation and possibility chemotherapy (although sarcomas are known not to respond very well to some chemo treatment, so she would always double up with radiation). She would also have me constantly monitored. So I can lose my cervix, keep my uterus and lose my ovaries. She also said that if I were to try to carry a baby with no cervix, I would have a 30-40% chance of losing the baby (eg not complete the pregnancy), and this will go up with age.
She said that the recommended treatment is hysterectomy because it is uterine cancer (eg, it could affect all the uterus for all she knows, it does not have to show visible tumors). If she does this, she would probably feel comfortable not removing the ovaries because there's only an 8% chance that they are affected (although it's the next level up). If upon biopsy, the uterus shows a lot of cancer cells, she will probably order radiation/chemo and want to remove the ovaries. To be conservative, she would recommend to remove them, which is actually the standard procedure for tumors that are bigger than 2cm (my case, was double that size and 3 after partial removal)
Now if she does this: harvesting eggs and freezing them is possible (and they stay the age they were when they were harvested) but chances to have a successful fertilization is very small. Freezing embryos has a higher chances of success but not that high (so I'd have to have quite a few in reserve...
To help me make those decisions, she has referred me to the endocrinologist/fertility doctor across the road - another expensive piece of real-estate with even less parking.
She said that there is also a slight possibility that the sarcoma has gone extra-uterine. It's small but not zero. That's because of this A to C jumping B thing. So in any case, she would want to have me monitored closely. This is also why in tumors that are bigger and higher grade sarcomas, radiation/chemo is usually recommended even after surgery.
At this stage, she believes that there is a strong chance to cure the cancer (although it could recur for example in the vagina). She needs more data but she'd say 90% with complete removal (including the ovaries). She wants the local pathologist lab to look at the slides (sample from the biopsy) to confirm the sarcoma diagnosis and make sure it's not another type of cancer.
Hormonal changes and genetics don't seem to affect sarcomas that much (they are quite happy to develop on their own apparently) but she said that there was so little to work with that no doctor will want to make a call on this. In any case, she would not recommend a pregnancy because I have a life-threatening disease and until it is cured, I might be making a decision to bring into the world an orphan. She said that definitely in a year from now, it would be super hard to tell what can happen. So she has no idea about a timeline. The tumor is pretty big and I had experienced the symptoms for several months (there are symptoms only for advanced sarcomas) -
And the reason why they are hard to detect via PAP test is because the small area of the PAP swab may contain zero cancer cell since it is a heterogenous tumor, but everything else could be affected...Biopsy of the tumor itself is the only way to diagnose this type of cancer. She did say that I was very lucky to have found the tumor "by chance" a lot of people don't find out about it until very advanced stages.
This cancer doesn't metastase as quickly as some more aggressive forms of cancer (that's good news) but as they are non linearly invasive cancers and don't respond well to some kind of chemotherapy, they are hard to treat. Also once they get to another organ, they can mutate and start to metastase quite happily, or remain undetected unless they are too advanced to be contained with surgery only. Also, they are unknown entities, little data, high mutation rate and they become more and more aggressive as they grow (ultimately spreading like all the other types of cancer). However sarcomas of the uterus that have spread outside of the uterus also have extremely poor prognosis.
So she said even with surgery, there would be no guarantee that I would be cancer free, just a high chance. She would still want me to have regular checks up every 3 to 6 months (MRI) for 2-5 years. then at least once a year.
I obviously don't know anything about sarcomas, so all of this is my understanding of today's visit...
ps: Adeno means that it starts in glands
Until next time!
Until next time!
posted by Finance Monkey at 5:48 PM
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