Relapse endometrial cancer
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.
Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.
I'm also new to this site and trying to figure out the best thing for my care. I have been told way too many times that my case is "unique". which makes it very hard to find anyone that has a similar experience.
I'm sorry to a hear your cancer is recurring but do not lose hope. My cancer started very similar to yours. Unfortunately the laparoscopic removal of the uterus often seems to leave a few cancer cells behind. I found a large lump in my right abdomen. When it came back, my doctors ignored it so I ended up at Mayo, thank goodness. My cancer then spread to lymph nodes in my right groin. Radiation got it all. It then spread to my right lung and once again immunotherapy and radiation took care of it. Yes I do have some residuals from my treatment but I am now cancer free for three years and have a rich and full life with family and friends. Be patient and enjoy the little things. All of a sudden you will realize you are healing in body, mind, and spirit.
@jeanadair123 The use of a speculum in our follow-up cancer surveillance appointments has come up in other Discussions in our support group. I had my most recent cancer surveillance appointment the first week in September. I get my speciality care at Mayo Clinic in Rochester. I asked my nurse practitioner this question. Does she use a speculum with all of her patients and she said “yes”. This is the standard protocol. So every time I’ve returned for these appointments I have a pelvic exam that includes a speculum to have a look inside the vagina and at the vaginal cuff. In fact, this is how my recurrence of endometrial cancer was found in 2021.
I was initially concerned that CT scans were not part of my exams after I was first diagnosed with endometrial cancer in 2019 and had a hysterectomy. However, CT scans are now included in my exams following my recurrence in 2021. In my opinion, there is nothing that can replace the “hands on” exam.
So, let’s keep advocating for ourselves. We know our bodies best, right?
Isn’t it sad though that I had to go to 4 doctors before I found one who would use a speculum. Isn’t it stressful enough going for an appointment without having to ask for the doctor to use a speculum?
Hi Samaco, how are you now? It has been almost 2 years since your relapsed and I'm curious on to how is it going. Praying that you are doing well. I had similar surgery in July 2022, so that thought is in my mind 24/7 but not always in a bad way. Once you get this diagnosis you are never ever the same, you have hope, you go about your regular routine as best as possible but the fear of a relapsed is so REAL. I try to ignore it most days, I'm grateful for being here but I have to admit that I am a little scared of what the future holds for me. I will do my best to be happy, healthy and connected with God and my family, that's all I can do. I wish everyone here the best of luck, GOD bless You ALL!
Hi earscan, how are you doing after your hysterectomy? Hope all is well for you. God bless and Good luck
Hi miriam57, hope all is well with you. Best wishes and God bless you. I you don't mind me asking you why did they do a scan & Pet scan in July after your hysterectomy with just a stage 1A diagnosis. I heard that similar grade stage and surgery get pelvic exams every 6 months unless the patient has any new symptoms or complaints. Just curious for a friend...
Hi jeanadair123, hope all is well with you. How did treatment go and were they able to do surgery again on the cuff or how do they treat it. Hope they took care of it to your satisfaction. God bless and good Luck!
I'm simply curious whether you had any symptoms that reappeared to suggest that the cancer had returned since nothing showed? Thank you very much for responding!!!
No systems just kept changing doctors until someone used a speculum and that is how they found it.