I have been on a lonely journey. Dx in 2015, 4 recurrences (3 of which were not technically recurrences). On Ibrance and anastrozole for about 7 years. Hanging out in Metastatic Breast Cancer research and forums to learn about side effects and learn about their treatments options when this one fails. Frustrated that I don’t have the same options as MBC patients because funding for EC/UC research is so low and progress is 3 to 5 years behind.
This type of EC/UC is in the NSMP (no specific mutation category) which is even more underfunded and researched despite representing about 40 to 50% of us.
Who else is in this category? How is your cancer being treated? Where are you being treated (research cancer center or local medical community)?
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Merma
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Merma, I feel your pain. I was diagnosed with clear cell endometrial cancer which represents only about 5% of all ECs. It is very aggressive and I live in fear of the inevitable recurrence because I know that there is nothing out there for me. I had metastasis outside of the pelvic area during chemo (!) and radiation followed. My genetic profile and biomarkers do not align with any of the new treatments and the lack of research for my cancer in particular and EC in general is more than frustrating. You are certainly a thorough researcher and on top of your care, for which I applaud you. The brick wall in front of us needs to be knocked down because it is difficult to live with diminished hope. Keep the momentum going. I hope that somebody out there can provide you with some valuable information. I am in your corner.
Thank you for this reminder. I was told that upon recurrence a new report would be requested as the markers & pathology might be different from the original ones . So we would be starting from square one if we went that route. I would also be getting second and third opinions (again), because we don’t give up until we try all of the doors and windows
Awesome! With recurrences, you may or may not have different pathologies and markers. I've had 4 recurrences. They were all basically the same. After my last recurrence and non-recurrence (vaginal cuff - recurrence, lung nodule - was just sitting there for 9 years), there were some new mutations, but no new targets. So I'm on the same regimen until the next recurrence.
The key is the monitoring. I am on the six month PET/CT schedule because that is the only way they have found my recurrences. Technically, only the vaginal cuff was a real recurrence. The first, (18 mons after the hysterectomy) was minimal residual disease in 2 pelvic lymph nodes. The second, (6 months after chemo ended) was from a contamination during the hysterectomy - it landed in my stomach muscle. They had been monitoring the lung nodule since 2015. It had been doubling in size, but didn't light up until I had too long of a break from Ibrance.
Needless to say, I'll always be on some drug or another unless they find an immunotherapy or adc, or PROTAC or something else that cures it.
In the meantime, like many people with mbc with my markers, it's a chronic disease. For me, they treat it with the "whack-a-mole" approach by using radiation to spot treat. That is not how they treat in mbc because the recurrence often lands in hard to treat areas for them.
As soon as I was able to accept that it's a well-managed, chronic disease, it became easier to live with. Although I hope for a cure, I just need to keep on top of my next options. Unfortunately, those may be still stuck in mbc. But knowledge is power. Who knows, I may be able to get access because of my determination.
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