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Uterine Cancer Returned after only 3 months

Posts: 44
Joined: Aug 2009

My sister, age 60, was diagnosed with very low grade stage 1B endometrioid adenocarcinomas. Robotic surgery was performed with total hysterectomy (everything removed) and 30 lymph nodes taken and a wash (flush). Only cancer found was in the interior of the uterus.

In May she started spotting (vaginally) and waited until her regular follow up to see the doctor. He performed a biopsy and ordered a PET scan. Because of a scheduling mess up, the scan wasn't performed before she left for 3 weeks to come visit the family (she lives in EL Paso, we live in Dallas). When she returned home, she discovered the Doctor had been trying to contact her to let her know that the cancer had returned and was on the vaginal cuff and possible an area by her lymph nodes (which could also just be inflammation). He scheduled her for 25 radiation treatments.

The radiologist gives her prognosis as very bad. Says the radiation treatment will not cure her; will only shrink the tumor. This doctor feels that the cancer (still the low grade endometrioid adenocarcinomas) has already spread to other parts of her body and just hasn't grown enough to show on the PET scan.

Is there hope? There isn’t any talk of removing the tumors on the upper third of her vagina or chemo……..We are working on getting her into MD Anderson for a diagnoses and treatment plan.

lindaprocopio's picture
Posts: 2022
Joined: Oct 2008

Unless the cancer found was an aggressive Grade 3 cell type like papillary serous (UPSC) or clear cell, at Stage 1-B, just having the debulking surgery and staging with no chemo or radiation may have seemed a fairly safe bet. How awful that your sister was so unlucky and that the cancer spread almost immediately! Why does the doctor assume that the cancer has seeded in other areas of her body? You are wise to get a second opinion; chemo could be going after those tiny distant tumors, if they even exist. And I also don't understand why the radiation wouldn't shrink the vaginal cuff tumor down to NOTHING. I thought that radiation had that capability, especially HDR brachy radiation done internally. (Although I could be wrong.) Definitely seek another opinion. Her prognosis shouldn't be that bleak. Don't give up hope just yet. Sounds like her oncologist wants her to be prepared for the 'worst case scenario.' Surely there are other more optimistic potential outcomes! My oncologist always told me that we were going for a CURE for me, even with my very aggressive Grade 3 Stage III-c cancer. But when I pushed him about it, he did say that if my cancer came back, we would stop using the word 'cure' and would instead be 'managing' my 'condition' much the way people do who have diabetes or a heart condition.

thank you
Posts: 77
Joined: Jun 2009

Recurrence of cancer without previous chemotherapy or radiation treatment, can be treated with both - I am not an oncologist, but this is what I have read. Since the scan did not show any other organ involvement, I think that "of course there is hope!". Definetely go for the second or third opinion. Take care and good luck.

fuzzytrouble's picture
Posts: 213
Joined: Feb 2009

I am with Linda going for a second opinion, something just doesn't sound quite right to me.
I had a mets to the lungs within a year and then got my chemo (had radiation first)and now I am on my second clear ct scan. Please don't give up and find out as much as your can. Here's hoping you find some good news somewhere.

Hugs from Oregon

Posts: 44
Joined: Aug 2009

Thank you for your comments. We've learned more today.....my sister has some heart problems and it makes it impossible to procede with surgery or chemo that is harmful to the heart. We are working with all the doctors to get her into MD Anderson in Houston. There is a doctor there that is conducting a clinical test with a very special radiation beam. But it's amazing how doctors don't talk to each other.

But, the cancer is still show as the low grade uterine cancer that is behaving very strangly. MD Anderson will also be conducting further pathology test on the cells. Maybe something else will show up! I'll keep you informed.

Ro10's picture
Posts: 1579
Joined: Jan 2009

Hope you get answers to your questions and you can get a treatment plan. You all will remain in my thoughts and prayers.

Posts: 1
Joined: Aug 2009

Has your sister gone for second opinions on dx's?? I have Low Grade Endometrial Stromal Sarcoma which is a rare uterine sarcoma. Sometimes these sarcomas are misdiagnosed.

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