Diagnosed (spindle cell sarcomatoid uterine cancer) and need support

I didn’t have the type of cancer you have, but I just wanted to comment and say I am very sorry what you’re going through that. I am 64 and I had that both of those surgeries back in December and a debulking surger for cancers that had spread and they thought it was ovarian cancer but after my surgery my cancer doctor said the cancer started from my left tube and my ovaries didn’t have anything on them. Long story Anyway I just wanted to say i know how it feels and I am now taking a medication that can hopefully prevent it from returning coz she said these kind of cancers have a greater chance of coming back so after chemotherapy i thought it would be over when you ring that bell but unfortunately it’s not you still have to fight it if it has a chance of returning but I place my life , my hopes and my trust in God alone . He has brought me through all of this and I feel very blessed that I am a miracle coz after surgery cancer doctor said that chemo got all the cancer! And the surgery went so well so much could’ve went wrong and I was blessed i didn’t have to have a colostomy bag, and lymph nodes removed praise God !! he brought me through a very scary situation and He can do the same for you too ! trust him after all he’s really all we have and he is our healer. By His stripes we are Healed I claim that every day amen!! God bless you I pray you will get through surgery without any complications. God bless you as you go through this journey with cancer I hate it but God is amazing He can bring you through this too !

@beth365 Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group. I hope you find this support group to be as helpful as I did when I first joined. I understand that your diagnosis is one of the more aggressive and rare kinds of uterine cancer. If you've been searching the internet for more information may I suggest that you view statistics as outdated? This is what my own doctors told me. You might also make sure to read valid and reliable information from medical centers such as Mayo Clinic, Cleveland Clinic and MD Anderson or nonprofit (.org) websites such as American Cancer Society or ACOG (American College of Obstetrician and Gynecologists).

I had the same hysterectomy procedure that you are scheduled for. I did not have the same kind of uterine cancer asyou. In 2019 I was diagnosed with endometrial cancer (endometroid adenocarcinoma FIGO Stage 1). It was a complete shock to get this diagnosis that to me came out of nowhere just as I began my retirement a few months earlier. Since I live in a rural area of Michigan (the Upper Peninsula) there were no surgeons who specialize in this type of hysterectomy for cancer so my gynecologist referred me to Mayo Clinic in Rochester, MN. After the hysterectomy I learned that I was Stage 1a and no other treatment was recommended. Since the surgery was laparoscopic I had just 5 tiny incisions in my abdomen. Those healed quickly but the internal healing took about a month. I kept up and continue to keep up with my cancer follow-up appointments. With these frequent appointments (every 4-6 months) a recurrence for which I had no symptoms was diagnosed in 2021 and I had radiation therapy.

I've searched through the members in our Support Group and I don't find anyone who reported their diagnosis to be the same as yours. I am going to tag a few of our members who have been diagnosed with different kinds of uterine cancers and will provide support @gynosaur42 @denisestlouie @carol1024.

August 4 is next week. How are you feeling today and how are you preparing yourself for surgery?

Thank you for your comment. I really have not looked at anything but very credible sources like Cleveland Clinic, Mayo, ACOG, etc.

At this point I am enjoying my last week of freedom and good health. I have been cleaning, making time for friends and family, kayaking, hiking, and cooking. I am preparing myself for a long 6-8 weeks (I am not a candidate for laproscopic surgery) of recovery by buying necessities like a hysterectomy pillow, downloading lots of music to my playlist and books to my kindle. I have a supply of maxi pads and comfortable clothes. Other than some severe cramping and eating a lot for me I feel like my normal self.

I WILL BEAT THIS! Cancer sucks!

Beth

@beth365 Beth, What a terrific week you've got going for yourself. Getting those necessities taken care of like grocery shopping and cooking ahead of time, downloading music and books, getting those comfortable clothes all sound so very productive. I did the same before my hysterectomy not knowing ahead of time how I would feel after and how much energy I would have.

Hiking and kayaking? You are a very outdoor and active person. At some point after you are healed you will doing those activities again. With an abdominal hysterectomy your recovery time will be longer however you will be well prepared.

I'm glad to know that you are reading credible (valid and reliable) sources.

Do you have someone to go to the hospital with you and at home to help you out when you get back home?

I can’t comment on your specific cancer, but I will say 2 things -
1 - as previously stated, all statistics are old history.
2 - I had a complete, radial hysterectomy with EVERYTHING removed and cut vertically about 14” from above my belly button to ALL THE WAY DOWN.
I did not need any narcotics for pain, I was driving in 2 weeks. All in all, recovery was much easier than expected. I, too prepared for the many weeks of recovery, but it surprisingly went much better than expected. I live alone and managed fine on my own.
Hoping this gives you some encouragement.