Support group participation

[Magnificent1]

Stage 3a Uterine Carcinosarcoma. Diagnosed 1/2022, followed by Surgery, Chemotherapy, Brachytherapy. Currently no evidence of disease. Considered a rare high-grade cancer with statistically high rate of recurrence, desire to maintain current good health. I appreciate learning from, and helping others, while doing the best I can. Thank you for chance to participate.

[jessie4paws]

Hello There!I was diagnosed with Uterine Adenosarcoma April 1, 2021. High grade. After full hysterectomy I had chemotherapy (doxirubicin - lifetime max). I am approaching 2 years post treatment. Been under surveillance & CTs every 3 months. Keeping a close watch on a lung nodule. Praying to remain NED. I'm always looking to meet another person who has had uterine sarcoma.

[Magnificent1 in reply to jessie4paws]

Glad you're doing well. You are fortunate to have CTs every three months. A 4mm lung nodule was picked up on a recent scan but no change after a 3 month recheck, so noone seems worried about it. My cancer is a combo of carcinoma and sarcoma.

[jessie4paws in reply to Magnificent1]

That's wonderful that there has been no change with your lung nodule. Fantastic. Were you given doxirubicin as part of your chemo tx?

[Magnificent1 in reply to jessie4paws]

Had 6 doses of carboplatin and paclitaxel, aka carbo/taxol.

[ReenieRhino in reply to jessie4paws]

No just radiation

[jessie4paws in reply to ReenieRhino]

If you dont mind me asking....How long ago was your radiation on your lung nodule? Have you experienced any symptoms from radiation? Thanks

[ReenieRhino in reply to jessie4paws]

I really haven't... I may have been a little tired but nothing concerning.

[ReenieRhino in reply to jessie4paws]

I had the same diagnosis with a lung nodule. Would love to follow you

[jessie4paws in reply to ReenieRhino]

Thank you for commenting. Yes, would love to follow one another. How far out post chemo are you? Were you given doxirubicin?

[ReenieRhino in reply to jessie4paws]

I did have the same Dx stage 1 with hysterectomy and ct scan follow ups then a lung module after 18 months. Radiation was done and nodule dead. I continue with ct scans every 3 months.

[jessie4paws in reply to ReenieRhino]

What was the size of your lung nodule when you were recommended radiation? I'm in Minnesota. Just curious where are you located?

[ReenieRhino in reply to jessie4paws]

1.5 cm

[ReenieRhino in reply to jessie4paws]

California using MD Anderson Scripps La Jolla

[ReenieRhino in reply to jessie4paws]

They don't do anything about those tine nodules but watch them. If they grow they biopsy them then decide about what to so... Are you near Mayo Clinic?

[jessie4paws in reply to ReenieRhino]

Yes, using Mayo Clinic - Rochester, MN.

[Ziggysmom in reply to jessie4paws]

Hi, I was diagnosed with endometrial cancer grade IIIc in September 2020 and now NED. I also had a lung nodule which was followed up by a CT a month later and was told no change and not to worry. So, trying not to. Carolyn

[jessie4paws]

Hello Magnificent1, I was diagnosed with uterine adenosarcoma, high grade. It's rare, so I dont often run across another who states uterine sarcoma. Nice to meet you! We will continue our best to remain NED.

[ReenieRhino in reply to jessie4paws]

I was diagnosed in 2020 with the same thing.

[Magnificent1 in reply to jessie4paws]

Yes, working on staying healthy. My new lung nodule was 4mm which they said was too small to biopsy or radiate or anything. Since it didn't change after 3 months, they aren't concerned I'm setting that aside for now. If a met, it would have grown significantly in 3 months. I do hope no more "new" things show up.

[Merma Moderator]

Hello there!

Welcome to this forum. You are definitely not alone! Terms like "rare cancer" and "aggressive cancer" definitely makes your heart skip a beat. Many of us are also concerned about recurrences. Having had two recurrences since beginning this journey in 2015 and being in remission for over 5 ½ years myself. It's always in the back of my mind. However, there is much to learn. The more you know, the better questions you can ask.

This is a good webinar for you: Not All Uterine Cancer is the Same: What to Know About Rare Uterine Cancers sharecancersupport.org/not-...

Share has other webinars and several support groups for you to check out.

sharecancersupport.org/uter...

sharecancersupport.org/cale...

sharecancersupport.org/cale...

sharecancersupport.org/cale...

sharecancersupport.org/cale...

I hope this is what you were looking for.

Best wishes.

[ReenieRhino in reply to Merma]

Thanks for the info.

[Magnificent1 in reply to Merma]

The rare uterine cancer seminar video is very helpful. Thanks for sharing.

[ReenieRhino]

Hello Magnificent one… great news for you. I had the same Dx.

[Magnificent1 in reply to ReenieRhino]

Yes, please keep up "lung nodule people" posted.

[Nidan]

I have similar issues. 1-2022 diagnosis, 3c serous carcinoma. 6 cycles standard chemo and then 25 radiations and two brachiotherapy. end of that, lung nodules started getting bigger. by December they were numerous and some bigger. Took a lot of time to diagnose and get biopsy. Started Keytruda and lenvima in February. Pretty brutal. June it was determined not to be working and we switched to Enhertu (I'm Her2 positive). Last few months, marked improvement. Nodules are disappearing. I have asked for the lowest dose possible for QOL and it is helping this round. Have yet to see what that will mean for the nodules (scan in two months as I just had one which was so positive). Curious about others with lung issues that got worse like mine (I also got COVID when this became apparent which I think complicated things quite a bit). I am in rural Oregon but have a world class naturopathic doctor and we have consulted with UCSF, but access to the top notch hospitals is tricky for me. I am widowed and live alone (77) but have family support from afar and many friends helping. Blessings

[Magnificent1 in reply to Nidan]

That's a lot of good information. As update to my original posting, I have had a full blown recurrence since Aug 25 when my CA 125 jumped to 61 from its usual 10. (I was about to have a usual 3 month checkup). I had been disease free for a year. CT scan showed multiple new small nodules in my lungs, a met on surface of liver and extensive peritoneal carcinomatosis with small amount ascites and 2 masses in abdomen. Biopsy showed same cancer returned. Yesterday, I had Chemo #1 for this recurrence. After 3 rounds we will scan and see how things are going. I was Uterine 3a Carcinosarcoma, now automatic 4. Anyway, I'm in good spirits and am tackling this like anything else that needs attention, one thing at a time. I don't mean to be a downer, but this may be of some interest to a reader. This CS is rare and aggressive. Serous is a rare one too. Since I responded well to the Carbo/Taxol before, that's what we're starting with. Unfortunately, I'm HER2 neg, which may limit some other options. I am speaking with a naturopathic doctor specializing in Oncology and hope to get some additional counsel. It's good you have supportive friends and family, even if from afar.

[Nidan]

excited to get your reply. Sounds like we have a similar situation with significant differences. Being HR2 positive is makes the Enhertu a good possibility and it does seem to be working. I’ve had five infusions now. Also, I am considered stage four as well at this point. At one point. My CA 125 went up to 250. But it was 58 last week. I asked for the lowest dosage they will give me and I’m feeling quite a bit better. It’s making me almost giddy to feel this way I have wondered about the Carbo-taxol that you were getting for myself because it definitely kept the lungs clear during the initial treatment. Hope we can keep in touch for a while and see how it goes for both of us. just a couple of months ago I felt I was approaching possible expiration date. But now I am feeling like they are more possibilities out there and a longer time to be on the planet. I am consulting with two different naturapathis and getting lots of support. It feels so good to be using my bodies ability to heal rather than just pharmaceuticals. Sometimes all the suggestions are overwhelming but I just keep going. And I am lucky to have support locally and with family at some distance. My blessings to you.