Recurrence stories

BluebirdOne said:

I haven’t spoken to my oncologist

yet, just her staff to figure what they want me to do. I am concerned that this is holiday time and might not get an appointment, regardless. Or the B ream will be in charge. At any rate we will figure it out. 

Denise

Been there, done that.   My recurrence was diagnosed via MRI the week after Christmas two years ago.  My husband knew but we didn't mention it to the kids until after the first of the year.  I hope and pray yours is something other than a recurrence!

Yes, it's good they don't seem to feel it's an emergency, but it's so hard to be trying to get things arranged and everything is delayed because of the holidays, and you're trying to enjoy them and all the extra activity, but this is lurking in the back of your mind...  and especially with everybody scattered all over the place like that!  Hope you get some answers and can enjoy the holidays in the interim.

Hello Everyone,

I’m here for my mother. She was diagnosed with Stage 1A Grade 2 endometrial cancer in November 2021 and had hysterectomy the next month. We were told no chemo or radiation was needed since there was no lymph node or other organ involvement. We took my mother to the ER September 2022 and they found the endometrial cancer had spread to the peritoneal cavity and omentum.

The gyn onc wants to put her on a clinical trial where they could potentially do immunotherapy along with chemotherapy (if she is in the test group).

I think to say that we are shocked is an understatement, since the cancer was so early. I’m trying to see what I should be advocating for so my mom has a better chance. I’ve been researching like crazy and I’ve seen treatment options including surgery to remove the “seeds” in peritoneal, CRS with HIPEC, progesterone or hormone therapy, metformin, etc. Please let me know your experiences/insights.

btw, I asked the doctor if this could have been prevented if we did chemo/radiation after the hysterectomy and they said no because this would have progressed anyway and that’s the mystery of some cancers.

Originally diagnosed stage 1A, grade 1, adenocarcinoma at 40 years old. Diagnosed with biopsy after I complained about constant bleeding between periods. Had davinci surgery. Removed uterus, cervix, fallopian tubes and one ovary. Offered me the chance to keep an ovary b/c of my age. Mentioned he had 5 patients opt for this and none have recurred. I said sure. Sounds good. He chose to remove the ovary that was in cycle so that the next one could take over. Offered CT scan a year later. Surgeon didn't insist so I didn't have one. Same thing the following year.

Recurrence: Two years later after my original diagnosis, I started my dream job but by spring I was feeling really run down and tired. Assumed it was from working so much. By end of summer I noticed I wasn't having normal bowel movements (gas, constipation) and pain in my pelvis especially on my bladder. Surgeon didn't think it was anything related to my cancer and said I could move on with my life and see his nurse going forward. My primary care physician, however, didn't want to take any chances. Ultrasound showed a huge mass (7cm x 9cm) on my remaining ovary with involvement with my bladder and lower intestine. Went back to the surgeon. My surgeon was absolutely shocked. Obviously took it out and part of my rectum and appendix along with omentum. Had radiation then chemo for 4 months. Cancer was the same slow growing type as the original. They're not sure how it came back. It could have been there all along but too small to detect.

In hindsight, should I have done the CT scans? Absolutely. Was I a high risk recurrence. Not at all. And my surgeon kind of dismissed me but my PCP saved my life by insisting on the ultrasound. Three years after treatment, my medical oncologist asked whether I wanted to continue with scans. Absolutely. Every six months for as long as I can.

Hi,

ER+ and PR+ and HER2- Endometrial Cancer

Original: 2015 -Stage 1B, Grade 3 Hysterectomy & brachytherapy, recurrence in 2 pelvic lymph nodes 2016 - external beam radiation & chemo put on anastrazole after, recurrence in left rectus abdominus 2017 - from contamination during original surgery - treated with brachytherapy and put on Ibrance and continued with anastrazole. I have been on the Ibrance and anastrazole treatment for almost 5 years - dr says since I am in remission, it is called well-managed cancer.

The recurrences were only caught by the scans, so I have a PET/CT scan every 6 months and the comprehensive and CBC/Autodifferential blood tests every month. This cancer doesn't show up on the CA125. After the 2nd recurrence, I had the tumor analyzed by Foundation One.

Hope this is helpful.

Corby

Mercorby,

Thanks for checking back in with us. I’m glad to hear that Ibrance and anastrazole treatment have been working to keep you stable these past few years and that you’re being so closely monitored by your doctor. May your remission long continue!

Hello Corby,

I asked my mothers oncologist about it and she said that Ibrance is typically only effective for low burden tumors so she said it’s not worthwhile for my mom to go on it. I feel like she’s just giving us the run of the mill answers though. I feel most the doctors we’ve seen are just following “standards” and not thinking outside of the box.

I requested them send my moms info to Foundation One to see if there is any targeted therapy available.