endometrial cancer 3c

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.

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.

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.

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. 

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

Northwoodsgirl 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.