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.

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.

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.

https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/cancer-treatment/ca-treatment-endometrial-web-algorithm.pdf

This is a good link for stage and treatment.  I don't know how to make it active.  Copy and paste.

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!

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

I had endometrial adenocarcinoma stage 3a, grade 2. I had 7 rounds of chemo (adriamyacin/carboplatin as I was too allergic to the Taxol to even desensitize). I had 25 treatments with IMRT radiation and finished that May 2018. So far so good. The only side effects I had were a hemorrhoid and a when I get tired at night I also get really nauseous. Fortunately, that last side effect is slowly ebbing but I did end up quitting my job at the library as I just couldn't do evening work anymore.  But overall I feel good and I'm very thankful. I have a yearly pet scan scheduled for October.

Cheese, my story is pretty much like yours with the exception of problems with urinary tract. I was same stage and grade. I didn’t feel I had any time to question. Yes, continued bowel problems and no sex, but I’m alive.