Recurrence stories
Comments
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duplicate postFridays Child said:Best of luck
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!
dupicate post
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Best of luckBluebirdOne 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!
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USPC
I'm so fortunate to havw USPC stage 4 B, grade 3....
I had 3 times carboplatin and taxol, followed by massive humongous surgery, followed again by 3 times chemo again. Was kind of NED for 9 months, and here we go again.
I'm from denmark so it's probably different here. I had CT scans every 3 months. Or, at first it was every 6-8 weeks as I still had some nodes that was swollen. My ca125 was 13 so we decided it was nothing. And 3 months later, bang. Ca125 of 160 and two nodes that became one big node, festered with cancer. Woooohoooo.....
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Thanks, Fluff for sharing your storyFlufff said:USPC
I'm so fortunate to havw USPC stage 4 B, grade 3....
I had 3 times carboplatin and taxol, followed by massive humongous surgery, followed again by 3 times chemo again. Was kind of NED for 9 months, and here we go again.
I'm from denmark so it's probably different here. I had CT scans every 3 months. Or, at first it was every 6-8 weeks as I still had some nodes that was swollen. My ca125 was 13 so we decided it was nothing. And 3 months later, bang. Ca125 of 160 and two nodes that became one big node, festered with cancer. Woooohoooo.....
I am sorry that you have a recurrence. Hope they can help you through this.
Denise
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No news is good news, I think
Oncologist wants me to be seen by my PCP. Logisticalply this stinks. Oncologist is at Mayo, PCP is in Illinois, I am in Denver. I have seen an internist here, but only once. Everyone takes two days to get back as this is not an emergency. The swelling and pain in what I think was my supraclavical node has subsided, but is not totally gone. Still a bit of a stiff neck. No fever, cold or other infection that I know of to cause this. Pain in my left hip area is still there, not terrible enough for even a Aleve, but there, like my little dog not leaving my side. The holidays suck trying to get answers. Kinda in limbo because thankfully I am not in any acute distress. My PCP is wonderfful and looks out for me so hoping she gets back to me soon. I have a little granddaughter I need to see in a few days. I know that spread to this particular node area is very rare given my history. Hope to sleep better tonight.
Denise
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Waiting is so hard!
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.
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Yup. This is the worst timeFridays Child said:Waiting is so hard!
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.
of the year to get attention. I leave in two days for my son’s house Thanks for the kind words. Happy Holidays to all
Denise
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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.
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Saying no to your question is a guess. A better answer would be to use statistics to compare recurrence at that stage with and without treatment. Medicine does not know enough yet to say concrete answers about this cancer. I am so sorry she recurred. I have 1A serous and had no treatment. I have not recurred in 4 years.
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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.
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I reread this entire thread and am glad that I started this topic, years ago, not long after my dx and treatment. Obviously, I was in that very stressful time right after finishing treatment and scared to death. I am saddened reading the comments by my many friends who are no longer with us or those who have drifted away, but so encouraged by our continuing conversations on this site. I am so fortunate to not have recurred, these 4 years have been a gift to me and I remain humbled by all of our conversations and the friends I have made. For a long time I could not bear to read these old threads as they were too sad for me, but I must have healed emotionally to a point where I can read and not be overwhelmed. Our resilience may be slow in working but it still works.
xxoo
Denise
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Do you know if you are ER/PR+? We asked my moms oncologist about Megace and she indicated it’s only for people with low tumor burden. My mom also had uterine cancer that spread to peritoneal cavity but her treatment now is standard chemo and possibly Keytruda since she is in clinical trial. I’m just wondering if we should push more on Megace but I’d like to know if there are certain indicators/qualifications for that. Thank you.
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I am not a health care professional but I believe that Megace is prescribed for those with Type 1, hormone sensitive endometriod cancer. This is probably a question for your mother's doctors?
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We asked them and I guess I’m just not too confident in their responses so I want to validate. My mother has type 1 and from her reports, it seems like it is hormone sensitive as well so im not sure of their response of “it’s for low burden tumors”
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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
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Hello Corby,
That is so amazing and thank you for sharing! I have asked my moms oncologist about this. My moms report says she is ER+ 50 percent and PR+ 25%. Not sure if you think this treatment is feasible for this?
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Hi there,
It is definitely worth asking her doctor about. There are other uterine cancer patients using Ibrance and an aromatase inhibitor. I don't know if they are using it for maintenance like me, except for a few people in Metastic Breast Cancer Forums. Several of the MBC patients have been on this combo for longer than I have - probably because it was offered to them first.
I haven't seen anyone's cancer described ER+ 50% and PR+ 25% before. I wonder if that's a new thing.
I'd like to hear back from you if your mother's dr decides to put her on Ibrance and an ai.
Best wishes,
Corby
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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.
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