Carcinosarcoma

KarFight
KarFight CSN Member Posts: 2 *
in Uterine/Endometrial Cancer #1

I am a 66 yr old that found pink discharge on 5/14/2025. PCM referred me to women’s center on 5/22/2025. They preformed a pap which came back clear and scheduled an ultrasound. Had ultrasound on 7/1/2025 and when Doc saw results she preformed a biopsy immediately. 7/10/2025 biopsy confirmed I have Carcinosarcoma. Referral to Oncologist. 7/11/2025. Discussed results of biopsy and scheduled Davinic Laparoscopic Total Hysterectomy Bilateral Salpingo-oophorectomy sentinel nodes. 8/1/2025 CT with contrast for Chest, Abdomen and Pelvis. 8/5/2025 with NO metastatic cancer found. 8/5/2025 Hystorectomy preformed. Post Op appt with Oncologist on 8/20/2025. Cancer contained in the uterus. Lymph nodes were clear. Suggested schedule of treatment is: 3 chemo treatments, once every three weeks, 25 radiation treatments, 5 days a week for 5 weeks, 3 chemo treatments, once every three weeks.

I am very concerned about the radiation treatments to my pelvic area because just what is being radiated since there is no longer cancer there. I am already on calcium treatments and am very afraid it will make my bone loss worse. I’m thinking of not doing the radiation. Any help or suggestions would be greatly appreciated.

Comments

  • oldbeauty
    oldbeauty CSN Member Posts: 387 Member
    #2

    KarFight,

    I'm sorry to read about your diagnosis. I was diagnosed with "garden variety" endometriod adenocarcinoma in 2005, which is a different diagnosis to yours, it seems. I think carcinosarcoma is a more aggressive strain.

    I've had several recurrences and treatments. You can read my bio, but I am posting just to say that I have had several radiations. I had the external beam to the pelvic area you described, and subsequently, external beam radiation higher up to get a metastasis to a para-aortic node; and finally, high beam stereotactic radiation to 2 spots in my lungs. While I do not doubt that radiation has left its mark (for example, I have radiation cystitis in my bladder that causes a frequency/urgency effect), I have not experienced any life-altering effects, diseases or damage that I know of.

    The first external beam radiation did not prevent a recurrence, but I place the blame for that on the first treating provider who did not sample sentinel nodes during their surgery. Just one rogue cell can plant the seed for a recurrence. I imagine that's why you are being advised to accept ancillary treatment: an attempt to kill any remaining cancer cells. No one can assure you they are there or they are not. Hence the treatment protocol.

    There have been others here over the years who've raised your concern about radiation. In the end, it's a personal decision. As I recall, most ladies have chosen to fight an aggressive tumor type with an aggressive treatment regimen.

    You might also consider seeking a second opinion from a national cancer center. These consults can be done remotely, I believe.

    You have much to consider. Mine is just one radiation story. Best wishes for your recovery from surgery and for making a decision on further treatment that is right for you. Oldbeauty

  • KarFight
    KarFight CSN Member Posts: 2 *
    #3
    https://csn.cancer.org/discussion/comment/1724373#Comment_1724373

    Thank you so much for your story. Yes my cancer is a more aggressive form but because there were no metastasis I’m just having a hard time deciding to do the radiation because there is no cancer there to treat.

  • MoeKay
    MoeKay CSN Member Posts: 506 Member
    #4

    I can appreciate your concern about the radiation. I had 25 treatments of external pelvic radiation 26 years ago and all of my risk factors for recurrence were inside my previously-removed uterus. I also had internal radiation (brachytherapy) after finishing the external pelvic radiation. All 30 lymph nodes removed during my radical hysterectomy were negative for cancer, as were my tubes and ovaries. However, as Oldbeauty stated in her post above, no one can assure you that there are no remaining cancer cells present, just that no cancer cells were found in anything removed during surgery. Even if you have a scan, nothing suspicious for cancer might show up, not because you are 100% cancer-free, but because whatever cancer remains is too small to show up on the scan at the time.

    Like Oldbeauty suggested, I would also recommend that you seek a second opinion from a national cancer center. A number of years ago, I referred someone who had questions about her diagnosis and treatment to M.D. Anderson and she was very pleased with the information she obtained from her remote second opinion.

    Best of luck,

    MoeKay

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