Relapse endometrial cancer

Posted by samaco @samaco, Nov 15, 2020

So, I was diagnosed w/stage 1A grade 1 endometrial cancer in May of 2018. After a laparoscopic hysterectomy, all was fine until relapse diagnosed 3 weeks ago. The tumor didn't even show on MRI, and the PET showed nothing. I am about to start radiation. Is there anyone out there in similar situation now or w/past experience? If so, I'd love to hear from you.Thank you.

Hi @samaco, welcome! I can imagine receiving the news of a relapse was difficult to hear. I'm tagging fellow members @m1b1r9 @odette @stparker54 @earscan @goldengirl2 and @stayinghopeful, who know what that is like first-hand.

You said the new tumor wasn't even detectable on the MRI or the PET scan. How did they discover the recurrence? When do you start radiation and for how long? Was cancer detected in the lymph nodes or only locally?

REPLY

Hi Colleen. Yes, I was flabbergasted. I was just over 2 years out and believed I would never have to deal with the prospect of a gynecological cancer again.I started spotting and called my surgeon immediately who did a biopsy. Biopsy positive for stage 1A grade 1: MRI showed nothing, but radiation oncologist wanted to be sure there was nothing else so ordered the PET which came back clean. Radiation starts tomorrow. 25 external beam and then a week break then 5 brachytherapy. Daily visits to the hospital during Covid concern me, of course, but I am taking every precaution plus. Been a bit of an emotional roller coaster but I am feeling relieved since PET results. I think hearing from others who have experienced this would be a very positive thing. Thanks so much for your quick reply.

REPLY
@samaco

Hi Colleen. Yes, I was flabbergasted. I was just over 2 years out and believed I would never have to deal with the prospect of a gynecological cancer again.I started spotting and called my surgeon immediately who did a biopsy. Biopsy positive for stage 1A grade 1: MRI showed nothing, but radiation oncologist wanted to be sure there was nothing else so ordered the PET which came back clean. Radiation starts tomorrow. 25 external beam and then a week break then 5 brachytherapy. Daily visits to the hospital during Covid concern me, of course, but I am taking every precaution plus. Been a bit of an emotional roller coaster but I am feeling relieved since PET results. I think hearing from others who have experienced this would be a very positive thing. Thanks so much for your quick reply.

Jump to this post

I was also 2 years out and ready to put it all behind me when voila it showed up in my left cerebellum!! tumor removed then 5 weeks later reoperated on to remove infection! MRI detected it after i was dizzy and nauseous and losing balance. i fear i have one back on the right side now🥱terrified and what an emotional roller coaster after doing SO well

REPLY

Thanks for reaching out @goldengirl2 ! What was the initial treatment 2 years ago? Surgery? Radiation? Sorry you are going through this, especially in this time of covid. I know when I was waiting for the PET test and results, I had a few days of feeling totally overcome with fear. Then 2 days before I was to get the results a calm came over me and I thought I can't let go of today waiting for what may or may not be bad news tomorrow. Luckily, it was good news. I wish the same for you. When will you know about your right side?

REPLY

Hi Sweetie – 13 yrs ago I had squamous cell carcinoma of the anal canal and had radiation for 1 hour every day over all the lower half of my body for 3 months and a chemo port for 244/7 chemo, also for the same time. Now the squamous cell carcinoma showed up in my uterus, then they said it went to the endrometrium lining, now it's cervical cancer. Going to have a radical hysterectomy and just get rid of all of it! It is an emotional roller coaster but you are in good hands and it sounds like it's in the beginning stages and they will just sap it out of there. Blessings to you sweetie, Gina

REPLY
@earscan

Hi Sweetie – 13 yrs ago I had squamous cell carcinoma of the anal canal and had radiation for 1 hour every day over all the lower half of my body for 3 months and a chemo port for 244/7 chemo, also for the same time. Now the squamous cell carcinoma showed up in my uterus, then they said it went to the endrometrium lining, now it's cervical cancer. Going to have a radical hysterectomy and just get rid of all of it! It is an emotional roller coaster but you are in good hands and it sounds like it's in the beginning stages and they will just sap it out of there. Blessings to you sweetie, Gina

Jump to this post

Hi Gina. Thank you so much for your post and your blessings. Yes, this radiation I started yesterday should be curative. I am grateful. Gina, you have been through so much. You must be tough as nails. When is your surgery? I am sending you all the good wishes possible and this photo for faith, strength, and peace.

fullsizeoutput_c0

REPLY

Thank you for posting. I just found out that my endometrial cancer has returned. I had stage 1A in May of this year 2020, radical hysterectomy. It didn’t show up in a scan I July or a PET a an in July. It just showed up in a scan last week, it is I my groin lymph node, 2 in my pelvis and 3 smaller masses in my pelvis. Meet the dr. In Jan.
Please post what is going on, I was hoping to find others who are going through the same thing.
Miriam

REPLY

Same here endometrial cancer in 2009, recurrence 2016. Radiation and brachytherapy. Mine didn't show on the pet scan either although I think they missed it from the next drs notes. Had I not gone to 4 gynecologist oncologists I would probably be dead by now, no one wanted to use a speculum which one of the drs finally did and saw that it had returned in my vaginal cuff. I was told at the time of my surgery that they got all the cancer so no radiation was necessary. All one can do is be proactive but it is tiring. Hope all goes well for you I know how scary this is.

REPLY

This is helpful to hear from others who have had reoccurrence. It gives me hope. I am just wondering what the treatments are for reoccurrence in the pelvic area. Please keep posting how others are doing along the way!
Miriam in Florida. Leveraging Mayo in Jacksonville

REPLY

I wanted to add the following but don’t want to alarm you as everyone is not the same. I had rectal bleeding after the radiation and it was very painful to have bowel movements. The doctors at Stanford gave me several creams none of which helped. I called my gastrointestinal doctor in desperation and he prescribed Nifedipine it actually worked it was like a miracle cream. Might be something you could ask your dr about?

REPLY

At least I see people were offered treatment and you are to write about it. I will find out more Jan. 4 . So let’s all keep sharing!

REPLY
@miriam57

At least I see people were offered treatment and you are to write about it. I will find out more Jan. 4 . So let’s all keep sharing!

Jump to this post

Just remembered make sure you get a sitz cover for your toilet to sit on, I can’t remember what exactly I put in it but I sat on it and soaked my bottom when it was really bad. Another question to ask your doctor about.

REPLY
@jeanadair123

Just remembered make sure you get a sitz cover for your toilet to sit on, I can’t remember what exactly I put in it but I sat on it and soaked my bottom when it was really bad. Another question to ask your doctor about.

Jump to this post

Thank you for the advice! Keep it coming. I just don’t know what the treatment will be. However, I am on the toilet a lot right now. It’s a little at a time. However many urges

REPLY

Started chemo yesterday. They are saying it is treatable. I am getting taxol and carboplastin?? Once every three weeks. Will check to see if tumors are shrinking after a couple of rounds. If they are, we keep going if not, they suggesting Keytruda. Anyone been on Keytruda?

REPLY
Please login or register to post a reply.