1. < Gynecologic Cancers

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.

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clo7277 | @clo7277 | Sep 11, 2023

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.

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karenlj | @karenlj | Sep 19, 2023

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.

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Sep 20, 2023
In reply to @jeanadair123 "Yes! Especially when you get to the 5 year mark. I just keep pushing for my..." + (show)
@jeanadair123

Yes! Especially when you get to the 5 year mark. I just keep pushing for my tests, I have a medical oncologist who feels CT’s are no longer needed after 5 years not happy with that since I have had 3 cancers. I talked to my gynecologist oncologist and explained my concern especially after they missed the cancer on the first pet scan, and I went to 4 gynecologist oncologist before I found one who would use a speculum had I not been proactive I would probably not be here to write this, due to this I have issues with trust in doctors I explained this and the fact that I would hate to find out later I had cancer that was missed so I asked for a pet scan which was ordered for me. It’s naughty really but try saying you have stomach pain, cramps etc I find that works. We only have one life so do what you have to to protect it.

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@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?

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1 reply
jeanadair123 | @jeanadair123 | Sep 20, 2023
In reply to @naturegirl5 "@jeanadair123 The use of a speculum in our follow-up cancer surveillance appointments has come up in..." + (show)
@naturegirl5

@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?

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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?

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ihndz | @ihndz | Oct 3, 2023
In reply to @samaco "Hi Colleen. Yes, I was flabbergasted. I was just over 2 years out and believed I..." + (show)
@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.

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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!

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ihndz | @ihndz | Oct 3, 2023
In reply to @earscan "Hi Sweetie - 13 yrs ago I had squamous cell carcinoma of the anal canal and..." + (show)
@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

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Hi earscan, how are you doing after your hysterectomy? Hope all is well for you. God bless and Good luck

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ihndz | @ihndz | Oct 3, 2023
In reply to @miriam57 "Thank you for posting. I just found out that my endometrial cancer has returned. I had..." + (show)
@miriam57

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

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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...

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ihndz | @ihndz | Oct 3, 2023
In reply to @jeanadair123 "Same here endometrial cancer in 2009, recurrence 2016. Radiation and brachytherapy. Mine didn't show on the..." + (show)
@jeanadair123

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.

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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!

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1 reply
annkwiatkowski | @annkwiatkowski | Oct 4, 2023

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!!!

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1 reply
jeanadair123 | @jeanadair123 | Oct 4, 2023
In reply to @annkwiatkowski "I'm simply curious whether you had any symptoms that reappeared to suggest that the cancer had..." + (show)
@annkwiatkowski

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!!!

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No systems just kept changing doctors until someone used a speculum and that is how they found it.

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