Any UPSC 1a who did observation rather than chemo/radiation

And here I am thankful that I found someone that agreed I need the chemo. My path report says polyp based with 0.5 mm invasion. She said 3 rounds chemo and 6 brachytherapy. This just sounds much safer than observation. But I will ask when I see her again, why 3 and not 6 of chemo. She is having me get a chest CT and a port the day before chemo. Thanks for the input!

i am glad I sought a 2nd opinion as I was corncerned at going from needing 6 chemo to observation. I do feel the small town cancer center was not as familiar with treating UPSC as Barnes in St. Louis. I will still ask about why 3 and not 6. I just turned 66 last week, but I eat mostly healthy and walk 4-6 miles/day. Hoping that will help me tolerate the chemo.

The advise from you ladies has been in the back of mind this whole time. I do appreciate your love and concern!

Donna

Notimeforcancer, I did tell my new gyn/onc about the CSN ladies! She had no problem with that.

I do wish I had found this group earlier in my journeY, so I would have known what questions to ask. Now I know I t is important to be proactive in your treatment and get copies of every test and visit. 

Feeling very blessed! Hugs, ladies! 

Donna Faye said:

Am back on my original post from Jan. 2017. Had a 6mo. check up 2/13/18 and 2 tiny lesions found on vaginal wall - not the cuff where the brachy was aimed. Nothing showing anywhere else so now begin 7 March, 25 rounds of external pelvic radiation then 5 internal where they hope will sap the 2 lesions w/o hitting the cuff area already radiated. onc has tlaked me into starting the cisplatin on March 13 - she says low dose to enhance the radiation effect. I have weighrd all the facts and will try the chemo but not sure I will go 5 treatments. Too many side effects for someone my age.  Once again I celebrate a BD finishing cancer treatment. April 8 !!! 78 years on this earth!  

Knew recurrence was a high probability but know we all hope it will not happen.  I read this site often to help me decide what I want to do as you are all in the field - not in the general's chair.

Hugs...

I'm sorry to hear of your recurrence.  That UPSC is sneaky stuff!  I was diagnosed Stage II, UPSC in August of 2015 and had three chemos.  I am on a six month schedule which is coming up soon.  I'm hoping this new treatment will take care of it for you and your birthday wish will come true!!

Good luck!

Love,

Eldri

evolo58 said:

This is a very rough, rough

This is a very rough, rough and not very-reseached guess, but in my opinion, UPSC of ANY stage is frustrating to research. I'm stage 4B, but for some reason, my pathology report says 1A, even though my omentum was involved. But it's still 4B, according to my care nurse. But .... but ... I always thought the pathology report was the final say. But my cancer DID involve the omentum, which is outside the uterus. But ... it might just be that the patholigist had something really strong in her tea. Really, I don't know anymore.

But this illustrates the problem. Online studies are sparse, covers women of all stages, treatments and backgrounds, and generally outdated or use small samples. Results vary. And Type 2s, including UPSCs, wind up being confused and feeling very ill-informed.

A thought popped into my head not too long ago. SUPPOSEDLY, the ideal doctor is supposed to see about 2000 patients a year. Not sure if that includes oncologists, and I think it's an ideal number, but let's go with that for now. This is a very ideal oncologist.

Take away benign cases, people who can't stand the onocolgist and go elsewhere, people who refuse treatment, and, of course, other types of cancers, and you have .... maybe at the very best ... ten percent of that. You're down to about 100 endo cases. 

Out of those 100, most are the garden variety. You're down to 20 Type 2 patients TOPS. Not just UPSC. All Type 2s. UPSC is the largest pecentage of those, but we will still have to take away a few. There aren't too many consistent studies that indicate the percentage of UPSCs to Type 2s in general, but for now, let's say it's 15 patients.

Fifteen at the very, very most a year. And my guesstimate is for an ultra-ideal fictional oncologist. This doctor is doing more ideally than the average oncologist, it seems, judging from Kinableu's statement, since I'm sure that most hospitals and centers have more than one oncologist.

Out of the fifteen, from what I'm studying, at least half are advanced right off the bat. Probably more, but I'm using a conservative number. Since we can't split a patient in two, and most are advanced, we'll give the extra patient over to the advanced stages. 

That would leave, at best, 7 UPSC Stage 1 or 2s a year for Dr. Ideal. The stage 3 and 4s are doing barely better at 8. 

Even if Dr. Ideal has been in practice for 10 years, that makes 150 UPSC patients in total, with 70 UPSCs in the lower stages. Over the last ten years, many patients don't bother seeing the doctor, move to another area, etc. So even using a conservative percentage again, Dr. Ideal is probably aware of the full case histories for about 120 patients AT BEST and in total. Many of those patients die of causes unrelated to cancer.

By the time you get to percentages of women with UPSC of ANY stage over 10 years, Dr. Ideal will probably not have very many cases. Maybe ... at the most ideal (since this is an ideal scenario) ... 80? Over a decade? And allowing for that advanced-stage percentage, the best number the good doctor will have will be for .... what? ... maybe 30 or so UPSC lower-stages?

Egads. No wonder info is so scarce.

I asked my gyno/onc how many patients he had seen with my diagnosis of UPSC and he replied lots.  I asked my radiation oncologist the same thing and she said "2" - I am the second one.  My onc/gyn has been practicing longer but my radiation oncologist has been practicing more than 10 years. I'll bet my gyno/onc said "lots" to reassure me during my initial visit.

Kinableu said:

Ah it's great to meet so many

Ah it's great to meet so many 1As who have had good outcomes. 

During much discussion with my team it came out that the available studies of US PC are somewhat dated and flawed. USPC is relatively rare and studies have tended to include as few as 30 women with different surgeries and   If it were possible to have a group to study who have similar history and surgery the effacity if chemo external or brachytherapy can be studied properly. As it's a high malignancy cancer many people do not like to take chances -- including me-- but the evidence that chemo helps isn't that convincing To some of the more advanced thinkers studying USPC. if it's caught in Stage 1 the choices for treatment should be an individual decision depending on what a patient needs and can withstan

At my hospital which is a cancer hospital/research facility nationally famous, there were about 300 cases of all types of endometrial cancer treated, most very advanced sorry to say, and just 30 stage 1 or 2 USPC. This gives you an idea how hard it is to get answers to treatment questions.

in my own case... though I had robotic surgery and recovered well, my surgeon did the full hysterectomy after a d and c by another surgeon in a local hospital. which had apparently removed the original small tumor. The second surgeon found some endometrialfoci (colonies if you like)  but it had not spread beyond the endometrium.  Since  the original site could not be studied we decided to go for both chemo and brachytherapy, The vaginal cuff is the most likely site for a recurrence, I hear, and brachytherapy will target that area.

 

Hope me this helps and best of luck .

This is a very rough, rough and not very-reseached guess, but in my opinion, UPSC of ANY stage is frustrating to research. I'm stage 4B, but for some reason, my pathology report says 1A, even though my omentum was involved. But it's still 4B, according to my care nurse. But .... but ... I always thought the pathology report was the final say. But my cancer DID involve the omentum, which is outside the uterus. But ... it might just be that the patholigist had something really strong in her tea. Really, I don't know anymore.

But this illustrates the problem. Online studies are sparse, covers women of all stages, treatments and backgrounds, and generally outdated or use small samples. Results vary. And Type 2s, including UPSCs, wind up being confused and feeling very ill-informed.

A thought popped into my head not too long ago. SUPPOSEDLY, the ideal doctor is supposed to see about 2000 patients a year. Not sure if that includes oncologists, and I think it's an ideal number, but let's go with that for now. This is a very ideal oncologist.

Take away benign cases, people who can't stand the onocolgist and go elsewhere, people who refuse treatment, and, of course, other types of cancers, and you have .... maybe at the very best ... ten percent of that. You're down to about 100 endo cases. 

Out of those 100, most are the garden variety. You're down to 20 Type 2 patients TOPS. Not just UPSC. All Type 2s. UPSC is the largest pecentage of those, but we will still have to take away a few. There aren't too many consistent studies that indicate the percentage of UPSCs to Type 2s in general, but for now, let's say it's 15 patients.

Fifteen at the very, very most a year. And my guesstimate is for an ultra-ideal fictional oncologist. This doctor is doing more ideally than the average oncologist, it seems, judging from Kinableu's statement, since I'm sure that most hospitals and centers have more than one oncologist.

Out of the fifteen, from what I'm studying, at least half are advanced right off the bat. Probably more, but I'm using a conservative number. Since we can't split a patient in two, and most are advanced, we'll give the extra patient over to the advanced stages. 

That would leave, at best, 7 UPSC Stage 1 or 2s a year for Dr. Ideal. The stage 3 and 4s are doing barely better at 8. 

Even if Dr. Ideal has been in practice for 10 years, that makes 150 UPSC patients in total, with 70 UPSCs in the lower stages. Over the last ten years, many patients don't bother seeing the doctor, move to another area, etc. So even using a conservative percentage again, Dr. Ideal is probably aware of the full case histories for about 120 patients AT BEST and in total. Many of those patients die of causes unrelated to cancer.

By the time you get to percentages of women with UPSC of ANY stage over 10 years, Dr. Ideal will probably not have very many cases. Maybe ... at the most ideal (since this is an ideal scenario) ... 80? Over a decade? And allowing for that advanced-stage percentage, the best number the good doctor will have will be for .... what? ... maybe 30 or so UPSC lower-stages?

Egads. No wonder info is so scarce.

that you search by Title and type in Research study on UPSC. I posted this study and it will give you information about various treatment outcomes- all evidence based- for the different stages of UPSC.  I hope this helps. Personally, I would have chemo for this nasty and insidious disease (I did for stage 3a).  I will never forget my gyn onc telling me early on: “Most of the women I see have UPSC or another type II uterine cancer.  I have seen women who were diagnosed with stage 1 or stage II cancer die very quickly, while other women with advanced stages ( ie, stages 3-4) live a long time with or without cancer”. Do whatever you can to reduce a chance of recurrence.

Warm Wishes,

Cathy