Carcinosarcoma

KarFight

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.

oldbeauty

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

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

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

Forherself

Welcome Karfight. Sorry you are having to deal with this. One point I would like to add is cancer cells are small. It is impossible to know there are no cancer cells present. Carcinosarcoma used to be known as malignant mixed mullerian tumor. You can find more survivors with that term. Our dear CMB is one of them.

NoTimeForCancer

KarFight, it sounds similar to mine. It was UPSC at Stage 1A, but the National Comprehensive Cancer Network (NCCN) lists the current SOC - Standard of Care. It also sounds like the treatment is similar to the one I had almost 13 years ago. It has changed, so I would ask them to show you what the NCCN SOC is for your particular type, but I understand your thoughts on radiation.

I had both external (25) and brachy (3) and I never wrapped my head around it. I am sure I was an angry patient - oh well - because I didn't understand. I did know that cancer was known to return to the vaginal cuff area so brachy made MORE sense, not that I really wanted any of it.

Please feel free to ask anyone. At the end of the day I wanted to do everything I could. I never had long-term side effects, but others have. I hate to say it, but it always 'depends'.

KarFight

https://csn.cancer.org/discussion/comment/1724373#Comment_1724373

Thank you. I hope you stay well.

KarFight

Thank you.

ShaniaT

https://csn.cancer.org/discussion/329649/carcinosarcoma

Hi KarFight, I know it's been a few months now but I came here to see if there are any updates. Thank you for sharing your story. It’s a lot to go through.
You asked why they might recommend radiation if there’s no visible spread. I’m not a doctor, but my understanding is that even when scans and pathology look clear, there can still be microscopic cancer cells left behind. Chemotherapy treatments are often aimed at those cells before they have a chance to grow.
I also know from experience, radiation isn’t used as often for ovarian/uterine cancers as surgery and chemotherapy are, so I can understand why this recommendation raises questions. It seems very reasonable to ask your team to explain their thinking in detail and challenge them with research info so you can feel comfortable with their plan.
Please keep us posted on how you’re doing. Carcinosarcoma is rare, and hearing about each other’s experiences really matters.

cmb

Both my oncologist and gynecological oncologist encouraged me to have external radiation after surgery and eight rounds of chemo for carcinosarcoma. Both were frank in stating that while radiation may not prevent a reoccurrence, it would be less likely to reoccur in the pelvis.

My CT scan after chemo didn’t show any signs of cancer, but I had had cancer cells outside my uterus initially. I actually waited a couple of months after chemo so that I could recover from that and also do some onsite work before starting radiation. I then had 25 sessions of external radiation.

The only side effect from this treatment was radiation cystitis that started the in the 4th week of treatment and lasted for another couple of weeks after treatment finished. I had been warned this was a possibility, but it was still annoying. But once that cleared up, I felt fine.

I have to say that I was also influenced by the memory of my mother – who dealt with reoccurrences of cancer for years back in the 1980s – saying that she was sorry that she had refused radiation after her initial treatment. Her reason was understandable, since as a nurse’s aid in a hospital she had seen the sometimes terrible side effects from the radiation treatments in the 1960s and 1970s. But none the less, she later thought that radiation might have helped stopped at least some of the reoccurrences she had.

When I mentioned her reservations in my initial conversation with the radiation oncologist, he assured me that the radiation techniques they use today are much more precise and not as likely to cause the type of physical damage seen during my mother’s time.

Radiation after surgery and chemo does seem like one more big step when you just want to be done with treatment. But I decided that I didn't want to have the regrets that my mother had - regardless of the outcome of my cancer.