endometrial cancer 3c
I was diagnosed with 3C1 grade 1 in January 2018 and it was highly recommended that I do both chemo and radiation. I chose to do only the 6 rounds of chemo. Chemo was completed end of May 2018. I am currently in remission.
If you had a similar diagnosis - What did you decide to do for chemo/radiation treatment after surgery and how are you doing?
Comments
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Similar
I was diagnosed with IVB grade 2 (endometrioid endometrial adenocarcinoma) in April of 2017. I had surgery, then chemo. Also was recommended to have radiation but after much consultation I declined it for now as well. In October of this year I'll have a PET scan which I'm praying will allow me to say I am 2 years NED. So far all physical exams have been normal and the CT scan at the 1-year mark was also NED.
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I was UPSC/clear cell, Ia in
I was UPSC/clear cell, Ia in the uterus but isolated tumor cells found in a sentinel node (and they only took two nodes). I had 6 rounds carbo/taxol, plus external pelvic IMRT radiation after chemo. I'm nearly three months out from radiation, feeling pretty good but lasting GI side effects, although greatly improved.
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Systemic vs Localized treatment
We all kind of face that dilema of whether or not to do radiation when our doctors recommend it. As hard as it is to get through chemo, it just seems like radiation is scarier. You really have to weigh the risks vs. benefits because ultimately you want your cancered cured, but those risks are really scary ones when you read about them.
There are a few cons to proceeding with radiation. First is that it only treats what it is directly aimed at. It's less likely to get stray cells like chemo can because it's a local rather than systemic treatment. Secondly, you can only use radiation to a given area once, so saving it for if there's a recurrence makes some sense. The thing is, you'd really like to avoid a recurrence because at that point a cure is less likely.
So when to listen to your doctor and proceed with pelvic and/or vaginal radiation that's often recommended? There actually are some indicators for us that should help in the decision that have been mentioned in many past threads, but bear repeating as often as someone needs them because this is a really important decision to be faced with. Some doctors treat us with overkill and don't worry enough about the aftermath we are left to live with, so the onus is on us to be as informed as we can be to have the best outcome.
The indicators are:
- An aggressive type of uterine cancer. I don't know about studies about this, but since I've been on this board it seems like even early stages of these kind of cancers get radiation recommended as part of the treatment plan. Frontline treatment is one's best chance for a cure and with aggressive uterine cancer you really want to throw the kitchen sink at it in the beginning. It's not unusual to get radiation and/or chemo recommended at earlier stages than hormone driven uterine cancer is.
- Origin of the cancer low in the body of the uterus. The lower the site of origin is in the uterus, the greater the chance of microscopic malignent cells escaping from the original tumor into the vaginal cavity.
- Myometrial penetration >50%.
- Lymphovascular invasion.
- Stage? I can't remember if advanced stage is one of the indicators or not, but it would make sense. I think Moekay originally shared these with me and maybe she can confirm or correct this.
Uterine cancer has shown a tendency for spread to or recur first in the pelvis/vagina area and 2nd in the lungs. That's why they take pelvic and para-aortice lymph nodes as part of most hysterectomies for staging. Radiation isn't a guarantee, but has been shown to reduce risk significantly when its used in these circumstances.
at60, you don't share all of the particulars of your pathology, so you may need to revisit your report to help you with this decision. Grade 1 sounds like you were caught early, but you do have a more advanced stage, so it's hard to say without the other indicators whether or not you should reconsider your decision. Hope this helps you.
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Link for treatment MD Anderson
This is a good link for stage and treatment. I don't know how to make it active. Copy and paste.
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1A UPSC
2017 - UPSC 1A; chemo and 4 brachy. Recurred vaginal wall 2018; chemo and 25 pelvic and 4 brachy.
NED since April 2018. Am having some after effects of radiation - may be PRD - pelvic radiation disease. SO far it is manageable but makes it hard to go far from home. At 79, not as bad if I wanted to run about, but because of the quick recurrence, radiation seemed best choice. Sort of damned if you do but also if you don't.
One day at a time.
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Thanks for the Nice Algorithm
MABound, the only adverse risk factor I had that your post didn't mention was tumor size. My tumor was approximately 4 cm. and anything over 2 cm. is considered an adverse risk factor. Just for sake of clarity, I also had extensive LVSI, lower uterine segment involvement and a tumor invading approximately 80% of the thickness of the myometrium. As a result, I had both pelvic radiation and brachytherapy. The algorithm Forherself posted a link to lists the adverse risk factors on page 3. For the life of me, I couldn't find what footnote 4 on page 3 (about depth of invasion) refers back to, so if someone has better eyes than I do, and finds what I missed, please let me know. Forherself, thank you for the very helpful algorithm!
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I had Stage 3c Grade 3
Had surgery, completed 16 of 18 weeks of chemo (had a stroke) I completed 28 days of external radiation and 3 sessions of internal. 8 months after completing radiation I reoccurred in the peritoneal area. I’ve been NED for about a year and a half being treated with Megace. But I’ve had serious stuff I attribute to radiation such as a blocked ureter that despite surgery has caused me serious problems. I have minor GI damage. I had bad radiation cystitis which finally cleared and vaginal stenosis that’s resulted in loss of any relations. I was treated in 2016. It’s a tough choice. My doctor talked like I had no choice. Did I? Hard to say in hindsight.
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Radiation and bulking
Much of this I know I’ve said all before so excuse me for repeating myself but 25 external radiation & 1 brachytherapy has totally changed (ruined) my life. I haven’t had the horrid side effect Cheese has had with her urther but there is a small blockage in the right urter That will be watched. My doctor insisted I have radiation I should have refused. Stage 3b grade1 35 lymph nodes removed all negative,,, results lymphedema. radiation cystitis was awful but has been treated with HBOT but I now have a non compliant bladder that won’t expland to hold urine & a weak urethra that won’t close which means I’m totally incontinent. the radiation dermatitis is almost worse then the incontinence for which there is no cure I’ve been told. Monday I’m having bulking, Botox in the bladder and collagen in the urether. I will have to self catheterize as long as the product stays active, about 6/8 months, 9/10 times a day. then I’ll have to do it again for the rest of my life If it works. My docs are not optimist for the long run which will mean bladder removal. I won’t do that without a fight!! cancer Is s beast but so are the treatments. Please cross all you digits for successful bulking. Thank you. I have learned so much from all of you. Thank you for sharing. I’m wishing you all well. Hugs to all of you.
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At60
Each of us makes our own decisions based on the information available to us at the time. I was diagnosed about 10 years ago 2B endometrial adenocarcinoma. I had chemo and both external radiation and brachytherapy. I am doing well.
My heart goes out to those of us who develop terrible unintended radiation syndrome or problems with bowels or bladder.
I agree with the sentiment that it seems we are “damned if we we and damned if we don’t. “ In my case my Mother died of the same type, stage and grade of cancer as I had (endometrial ) just 4 years before I was diagnosed. Age may have been a factor too. I was 20 years younger than my Mother was when she was diagnosed. Personally, I was willing to do the radiation because I was sure I was going to die like my Mother did since we both had the same stage and grade. That was my rational at the time. Rosesforever, I hope your urinary / bladder issues can be fixed. Keeping you in my prayers for a good outcome.
Lori
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Oh, dearRosesforever said:Radiation and bulking
Much of this I know I’ve said all before so excuse me for repeating myself but 25 external radiation & 1 brachytherapy has totally changed (ruined) my life. I haven’t had the horrid side effect Cheese has had with her urther but there is a small blockage in the right urter That will be watched. My doctor insisted I have radiation I should have refused. Stage 3b grade1 35 lymph nodes removed all negative,,, results lymphedema. radiation cystitis was awful but has been treated with HBOT but I now have a non compliant bladder that won’t expland to hold urine & a weak urethra that won’t close which means I’m totally incontinent. the radiation dermatitis is almost worse then the incontinence for which there is no cure I’ve been told. Monday I’m having bulking, Botox in the bladder and collagen in the urether. I will have to self catheterize as long as the product stays active, about 6/8 months, 9/10 times a day. then I’ll have to do it again for the rest of my life If it works. My docs are not optimist for the long run which will mean bladder removal. I won’t do that without a fight!! cancer Is s beast but so are the treatments. Please cross all you digits for successful bulking. Thank you. I have learned so much from all of you. Thank you for sharing. I’m wishing you all well. Hugs to all of you.
I am so very sorry to hear all this happened to you. My heart goes out to you.
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LoriNorthwoodsgirl said:At60
Each of us makes our own decisions based on the information available to us at the time. I was diagnosed about 10 years ago 2B endometrial adenocarcinoma. I had chemo and both external radiation and brachytherapy. I am doing well.
My heart goes out to those of us who develop terrible unintended radiation syndrome or problems with bowels or bladder.
I agree with the sentiment that it seems we are “damned if we we and damned if we don’t. “ In my case my Mother died of the same type, stage and grade of cancer as I had (endometrial ) just 4 years before I was diagnosed. Age may have been a factor too. I was 20 years younger than my Mother was when she was diagnosed. Personally, I was willing to do the radiation because I was sure I was going to die like my Mother did since we both had the same stage and grade. That was my rational at the time. Rosesforever, I hope your urinary / bladder issues can be fixed. Keeping you in my prayers for a good outcome.
Lori
You are so brave, and I am so encouraged to hear that you're a 10-year survivor! I can imagine your fear after living through it with your mom. My cousin Judy died of endometrial cancer too. She was diagnosed in April and died in October. I was diagnosed the following April and I was terrified, thinking I had only months left.
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Thank you for responding toArmywife said:Similar
I was diagnosed with IVB grade 2 (endometrioid endometrial adenocarcinoma) in April of 2017. I had surgery, then chemo. Also was recommended to have radiation but after much consultation I declined it for now as well. In October of this year I'll have a PET scan which I'm praying will allow me to say I am 2 years NED. So far all physical exams have been normal and the CT scan at the 1-year mark was also NED.
Thank you for responding to my post. I too will be having CT scan later this year, hoping we stay NED.
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Thank you for responding tozsazsa1 said:I was UPSC/clear cell, Ia in
I was UPSC/clear cell, Ia in the uterus but isolated tumor cells found in a sentinel node (and they only took two nodes). I had 6 rounds carbo/taxol, plus external pelvic IMRT radiation after chemo. I'm nearly three months out from radiation, feeling pretty good but lasting GI side effects, although greatly improved.
Thank you for responding to my post. I am happy to hear that you tolerated radiation and you are feeling good.
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Thank you for responding toMAbound said:Systemic vs Localized treatment
We all kind of face that dilema of whether or not to do radiation when our doctors recommend it. As hard as it is to get through chemo, it just seems like radiation is scarier. You really have to weigh the risks vs. benefits because ultimately you want your cancered cured, but those risks are really scary ones when you read about them.
There are a few cons to proceeding with radiation. First is that it only treats what it is directly aimed at. It's less likely to get stray cells like chemo can because it's a local rather than systemic treatment. Secondly, you can only use radiation to a given area once, so saving it for if there's a recurrence makes some sense. The thing is, you'd really like to avoid a recurrence because at that point a cure is less likely.
So when to listen to your doctor and proceed with pelvic and/or vaginal radiation that's often recommended? There actually are some indicators for us that should help in the decision that have been mentioned in many past threads, but bear repeating as often as someone needs them because this is a really important decision to be faced with. Some doctors treat us with overkill and don't worry enough about the aftermath we are left to live with, so the onus is on us to be as informed as we can be to have the best outcome.
The indicators are:
- An aggressive type of uterine cancer. I don't know about studies about this, but since I've been on this board it seems like even early stages of these kind of cancers get radiation recommended as part of the treatment plan. Frontline treatment is one's best chance for a cure and with aggressive uterine cancer you really want to throw the kitchen sink at it in the beginning. It's not unusual to get radiation and/or chemo recommended at earlier stages than hormone driven uterine cancer is.
- Origin of the cancer low in the body of the uterus. The lower the site of origin is in the uterus, the greater the chance of microscopic malignent cells escaping from the original tumor into the vaginal cavity.
- Myometrial penetration >50%.
- Lymphovascular invasion.
- Stage? I can't remember if advanced stage is one of the indicators or not, but it would make sense. I think Moekay originally shared these with me and maybe she can confirm or correct this.
Uterine cancer has shown a tendency for spread to or recur first in the pelvis/vagina area and 2nd in the lungs. That's why they take pelvic and para-aortice lymph nodes as part of most hysterectomies for staging. Radiation isn't a guarantee, but has been shown to reduce risk significantly when its used in these circumstances.
at60, you don't share all of the particulars of your pathology, so you may need to revisit your report to help you with this decision. Grade 1 sounds like you were caught early, but you do have a more advanced stage, so it's hard to say without the other indicators whether or not you should reconsider your decision. Hope this helps you.
Thank you for responding to my post with such valuable info. My surgical pathology: Tumor Size - 4 x 4 x 1.9 cm, FIGO grade 1 with >50% myometrial invasion, One lymph node positive for metastatic carcinoma.
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Thank you for responding.Forherself said:Link for treatment MD Anderson
This is a good link for stage and treatment. I don't know how to make it active. Copy and paste.
Thank you for responding. Nothing is better than equine therapy, I'll take 60 sessions of that, love your photo.
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Thank you for responding toDonna Faye said:1A UPSC
2017 - UPSC 1A; chemo and 4 brachy. Recurred vaginal wall 2018; chemo and 25 pelvic and 4 brachy.
NED since April 2018. Am having some after effects of radiation - may be PRD - pelvic radiation disease. SO far it is manageable but makes it hard to go far from home. At 79, not as bad if I wanted to run about, but because of the quick recurrence, radiation seemed best choice. Sort of damned if you do but also if you don't.
One day at a time.
Thank you for responding to my post. Glad to hear your 1+ year NED now.
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Thank you for responding toCheeseQueen57 said:I had Stage 3c Grade 3
Had surgery, completed 16 of 18 weeks of chemo (had a stroke) I completed 28 days of external radiation and 3 sessions of internal. 8 months after completing radiation I reoccurred in the peritoneal area. I’ve been NED for about a year and a half being treated with Megace. But I’ve had serious stuff I attribute to radiation such as a blocked ureter that despite surgery has caused me serious problems. I have minor GI damage. I had bad radiation cystitis which finally cleared and vaginal stenosis that’s resulted in loss of any relations. I was treated in 2016. It’s a tough choice. My doctor talked like I had no choice. Did I? Hard to say in hindsight.
Thank you for responding to my post. Although I chose not to do radiation at 3c1 (and it was highly recommended to do the radiation), if I had 3C3 I most likely would have opted for the radiation too as you did. Glad to hear you are now NED 1+ year now.
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I too am so sorry this allRosesforever said:Radiation and bulking
Much of this I know I’ve said all before so excuse me for repeating myself but 25 external radiation & 1 brachytherapy has totally changed (ruined) my life. I haven’t had the horrid side effect Cheese has had with her urther but there is a small blockage in the right urter That will be watched. My doctor insisted I have radiation I should have refused. Stage 3b grade1 35 lymph nodes removed all negative,,, results lymphedema. radiation cystitis was awful but has been treated with HBOT but I now have a non compliant bladder that won’t expland to hold urine & a weak urethra that won’t close which means I’m totally incontinent. the radiation dermatitis is almost worse then the incontinence for which there is no cure I’ve been told. Monday I’m having bulking, Botox in the bladder and collagen in the urether. I will have to self catheterize as long as the product stays active, about 6/8 months, 9/10 times a day. then I’ll have to do it again for the rest of my life If it works. My docs are not optimist for the long run which will mean bladder removal. I won’t do that without a fight!! cancer Is s beast but so are the treatments. Please cross all you digits for successful bulking. Thank you. I have learned so much from all of you. Thank you for sharing. I’m wishing you all well. Hugs to all of you.
I too am so sorry this all happened to you. I see 'fight!!' in your post, that in itself is a good sign.
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I would have made the sameNorthwoodsgirl said:At60
Each of us makes our own decisions based on the information available to us at the time. I was diagnosed about 10 years ago 2B endometrial adenocarcinoma. I had chemo and both external radiation and brachytherapy. I am doing well.
My heart goes out to those of us who develop terrible unintended radiation syndrome or problems with bowels or bladder.
I agree with the sentiment that it seems we are “damned if we we and damned if we don’t. “ In my case my Mother died of the same type, stage and grade of cancer as I had (endometrial ) just 4 years before I was diagnosed. Age may have been a factor too. I was 20 years younger than my Mother was when she was diagnosed. Personally, I was willing to do the radiation because I was sure I was going to die like my Mother did since we both had the same stage and grade. That was my rational at the time. Rosesforever, I hope your urinary / bladder issues can be fixed. Keeping you in my prayers for a good outcome.
Lori
I would have made the same decision as you if faced with the family history. Glad to hear 10+ years for you!
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Armywife, Thank you for
Armywife, Thank you for sharing your thinking having also lost your cousin to uterine cancer. It seems we had the same worries and fears. Being a long term survivor I hope that my posts from time to time on this board gives some hope and comfort to other “sisters” no matter where they are in their journey. There are many other women who read the posts but provide support through ongoing thoughts and prayers for all of us. I could never repay all the people whose posts have helped me get through treatments and learn how to accept our “new normal.” At60 keep us posted on how you are doing as time goes on.
Lori
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