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

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  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    ConnieSW said:

    My diagnosis,

    type, stage and grade, was the same as yours and I had 6 treatments. I finished over 5 years ago so maybe something has changed. I would ask your dr. 

    Like you, Connie.  Stage 1A,

    Like you, Connie.  Stage 1A, Grade 3 (UPSC) and the 6 chemo/3 external/3 brachy.  Since UPSC is aggressive it is worth asking.  BTW, Donna, mine was confined to my uterus - no omentum invasion - and I had the full monty.

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    And here I am thankful that I

    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!

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited October 2017 #144
    another comment on observation vs chemo

    I was a 1a with no signs anywhere of spread - started this blog to see what others were doing as little is known about our cancer. After much research and reading from the ladies here, I decided to go for the chemo and radiation. I am at a large teaching hospital and highly regarded so did do as they suggested - 3 chemo and 5 brachy! Chemo was hard on me as so tired ( age 77 ) so I did not move as much as should and got blood clots which was worst of all the treatments as on blood thinner shots for 6 mos. ( 2 more mos. to go ). Brachy was a breeze as had fantastic doc - he said they went from 3 to 5 as lower dose causes less damage. I am now in 10 month after - surgery in Jan.; chemo in April and May; radiation in July.  I think some docs are going to 3 chemo in older patients. Now that I am exercising again and back to all regular activity, I can look back and say glad I did it as one has to go with what is known.  Have had no problems except some aches and pains as I build muscle and energy, severely bruised tummy from 2 shots a day, and not being able to ride horse. Glad you are looking at several opinions as well as the GREAT ladies on this site. Hugs to all. Stay strong!

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    Thank you, Donna Faye

    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
    NoTimeForCancer Member Posts: 3,352 Member
    dgrdalton said:

    Thank you, Donna Faye

    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

    Donna - don't be afraid to

    Donna - don't be afraid to tell them you read on the ACS chat board where there are quite a few UPSC women who share and where you are getting info.  They may hate it but too bad and they need to know we are out here!  6 chemo to observation raised a question for me - but it is your decision in the end - so I am glad you got that 2nd opinion.

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    edited October 2017 #147
    Notimeforcancer, I did tell

    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
    Donna Faye Member Posts: 427 Member

    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...

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member

    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

    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

  • Susie2
    Susie2 Member Posts: 16 Member
    Donna, I am so sorry to hear

    Donna, I am so sorry to hear of your recurrence. Your original post was so helpful to me when I was first diagnosed with Stage 1a UPSC. At that time, I was also unsure whether to go with chemo/brachy, or observation only. I decided on treatment, as my final pathology report showed a separate primary cancer of ovarian serous, early stage. Hugs to you, too, and stay strong! Sending many positive thoughts your way.

  • Jairoldi
    Jairoldi Member Posts: 221 Member
    edited March 2018 #151
    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.


    So true

    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.

  • evolo58
    evolo58 Member Posts: 293 Member
    Jairoldi said:

    So true

    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.

    Also, "lots" is a vague

    Also, "lots" is a vague number. Presuming your gyno/onc sees at least 10 - 15 Type 2 patients a year, I don't know if he recommends radiation and/or chemo to Stage 1s. Some gyno/oncs choose not to recomemd it. Stage 4s don't usually get radiation, and they would be at least 25 - 30% of the total. So that would explain why the radiologist might not be seeing so many patients.

    This is NOT a time when I want to feel special, darn it!

  • evolo58
    evolo58 Member Posts: 293 Member
    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

    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.


  • Jairoldi
    Jairoldi Member Posts: 221 Member
    edited March 2018 #154
    evolo58 said:

    Also, "lots" is a vague

    Also, "lots" is a vague number. Presuming your gyno/onc sees at least 10 - 15 Type 2 patients a year, I don't know if he recommends radiation and/or chemo to Stage 1s. Some gyno/oncs choose not to recomemd it. Stage 4s don't usually get radiation, and they would be at least 25 - 30% of the total. So that would explain why the radiologist might not be seeing so many patients.

    This is NOT a time when I want to feel special, darn it!

    Thanks

    I hadn't thought of it that way. :) That makes so much sense.

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    Donna Faye, I recommend

    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 

     

     

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    Will do some cisplatin

    Thanks all for your replies and encouragement. I have decided to try the cisplatin - low dose on Tuesday March 13. I think the fact that this has recurred so quickly sort of took away my fighting spirit as I feel great and have had no signs. Also, it is in an unusual place so radiation internal will be very iffy as already had 5 brachy. However, both docs believe this is the best way and becuse so small, feel it might make a big difference. At 78, I don't want to make myself sicker as have seen many try and fight when enjoying the days might have been a better choice. As each of you have said, we each must choose the way that is best for the person and the life she wants. I was so blessed 21 years ago to beat stage lll BC and get to see my children and grandchildren grow and make wonderful memories with me. So, am at peace with whatever comes but will try and knock this back for some years. Will keep you posted.