1. < Gynecologic Cancers
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Recurrence of gynecological cancer

Posted by Helen, Volunteer Mentor @naturegirl5, Nov 26, 2022

Were you diagnosed with gynecological cancer in the past and completed your initial treatment? Do you experience a recurrence?

I was diagnosed with endometrial cancer - endometroioid adenocarcinoma, FIGO 1 in July, 2019. In August I had a robotic laparoscopic hysterectomy with removal of uterus, cervix, fallopian tubes and ovaries. The surgeon also did a sentinel node biopsy. The cancer was staged at 1a and the nodes were negative for cancer. I thought I was in the clear and could sail through the 5 year window of cancer surveillance follow-ups. Nope. In late 2021 a small polyp-like growth was found in the vaginal cuff. It was biopsied and there was the recurrence of the same cancer. PET/MR revealed no formation of tumor and no other evidence of cancer. I had radiation therapy (external beam and brachytherapy). My medical visits since the radiation therapy have shown no more evidence of cancer. For now. If I let myself go there I think - will this ever end?

Will you share your experience(s)?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Mentor
Helen, Volunteer Mentor | @naturegirl5 | Jul 15, 2023
In reply to @cialonel "Thanks.. your reply is helpful and i do need to think forward and not focus on..." + (show)
@cialonel

Thanks.. your reply is helpful and i do need to think forward and not focus on what might have been. I actually made plans today to go out to buy a notebook for questions and a journal. I feel like I will advocate better now...lesson learned. It frustrates me that because statistically 1a doesn't require more thorough exams, and that allows others to slip through the cracks. Maybe not an expensive scan but could a CA125 blood test have hinted something was going on before I was bleeding and the cancer was in the lymphatic system? And I think about all the people who can't advocate for themselves, understand what to look for or articulate what they need. Protocols based on statistics alone that are designed to reduce costs fail those all those people. Sorry for the rant. Still trying to get on top of what I'm feeling.

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@cialonel My doctor told me that the type of cancer I had (endometrioid adenocarcinoma) at Grade 1, Stage 1 has a 95% survival rate over 5 years. Now that’s survival rate, not rate of recurrence. So, I took this to mean that I had less than a 5% chance of my cancer coming back. Someone has to be in that 5% recurrence and I was one of the unfortunate ones.

When the recurrence was found in October, 2021 my nurse practitioner ordered a PET scan based on her discussion with the GYNOncologists in her department. Nothing showed up on the PET scan which was a relief and a puzzle. So, even if I’d been having regular CT scans at every visit a scan would not have shown anything.

I’m not quite sure what to make of all of this except that the recommendation of the GYNOncologist who performed my hysterectomy provided reliable and valid information to me. My recurrence was found on physical exam.

You are so right, though, that these protocols are based on empirical studies which include statistics and do reduce costs. I can rant with you because I want the very best medical care possible too.

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1 reply
cialonel | @cialonel | Jul 15, 2023
In reply to @naturegirl5 "@cialonel My doctor told me that the type of cancer I had (endometrioid adenocarcinoma) at Grade..." + (show)
@naturegirl5

@cialonel My doctor told me that the type of cancer I had (endometrioid adenocarcinoma) at Grade 1, Stage 1 has a 95% survival rate over 5 years. Now that’s survival rate, not rate of recurrence. So, I took this to mean that I had less than a 5% chance of my cancer coming back. Someone has to be in that 5% recurrence and I was one of the unfortunate ones.

When the recurrence was found in October, 2021 my nurse practitioner ordered a PET scan based on her discussion with the GYNOncologists in her department. Nothing showed up on the PET scan which was a relief and a puzzle. So, even if I’d been having regular CT scans at every visit a scan would not have shown anything.

I’m not quite sure what to make of all of this except that the recommendation of the GYNOncologist who performed my hysterectomy provided reliable and valid information to me. My recurrence was found on physical exam.

You are so right, though, that these protocols are based on empirical studies which include statistics and do reduce costs. I can rant with you because I want the very best medical care possible too.

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I hope you are doing well. I had the same diagnosis and now am in that 5% group. Thank you for taking the time to write. Let's make sure we're both around for a long time to offer words of encouragement to those who come after. PS I got my notebook and I'm writing down my questions. ♥️

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1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Jul 15, 2023
In reply to @cialonel "I hope you are doing well. I had the same diagnosis and now am in that..." + (show)
@cialonel

I hope you are doing well. I had the same diagnosis and now am in that 5% group. Thank you for taking the time to write. Let's make sure we're both around for a long time to offer words of encouragement to those who come after. PS I got my notebook and I'm writing down my questions. ♥️

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@cialonel I am doing well with nothing remarkable coming up during my last few visits. I agree with you. Let’s be part of that survivor group so we can help others who come here. Congratulations on getting your notebook. 📒

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johungate3 | @johungate3 | Jul 15, 2023
In reply to @cialonel "I had a total hysterectomy in Jan 2022 and staged at 1a. No treatment, just follow..." + (show)
@cialonel

I had a total hysterectomy in Jan 2022 and staged at 1a. No treatment, just follow ups every 3 months. Follow ups are quick exams, no scans. I jus had a follow up June 1 all clear. 2 weeks later I started bleeding. CT scan showed mass in pelvis and 2 pelvic lymph nodes. It's 6 weeks since my 'all clear' exam and I'm starting chemo next week. My head is spinning. How did this happen so quickly? Was something missed at the check up? I feel like I need to be better prepared this time around but I don't know what I should be asking for or advocating for to make sure I'm getting the right treatment.

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Yikes! I had a total hysterectomy this March, stage 1a, also. I just had my first oncology checkup yesterday, very quick.. No chemo or radiation. Keep posting on your progress. I understand why your head would be spinning.

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cipnsue | @cipnsue | Jul 16, 2023

Yes, the CA125 could have been a "hint" that something was wrong. That is how my second OC was found. I was having difficulty driving home in the interstate after work because I was so weak. My PCP did a CA125 and it had gone to 10, then 30 days later it was 30. I had a CAT scan and there was a tumor on my ascending colon. In the 3rd occurrence I was having extreme pain during Yoga and called my gynonc and said, "My cancer is back." A PET scan showed my ureter was being compressed and a small tumor in my pelvis. I ended up with cancer on my ureter, small intestine, and the tumor in my pelvis. Scar tissue had been compressing my ureter. I had an 8 hour surgery to resect the ureter and small intestine, remove the tumor and remove as much scar tissue as possible. I've had a CA125 and PET scan every year since 2016.

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cipnsue | @cipnsue | Jul 16, 2023

In teaching about and discussing OC I would share that OC cancer cells are likes seeds, they float around and embed in other organs of the body. Even with a bilateral salpingo-oophorectomy or BSO) where the omentum is also removed (an omentectomy) there is the possibility of a recurrence. My first recurrence was 11 years later, it was a shock to the gynonc. Statistics are just that - statistics. It allows them to compare cases, not predict. And it's not “five-year cure” for a couple of reasons. Most importantly, five-year survival doesn't mean you will only live five years. Instead it relates to the percentage of people in research studies who were still alive five years after diagnosis. So, nothing to do with recurrence.
According to the latest statistics from Ocrahope.org:
One of the most significant factors in determining a patient’s risk of recurrence is the stage of the cancer at diagnosis:
Patients diagnosed in Stage 1 have a 10 percent chance of recurrence.
Patients diagnosed in Stage 2 have a 30 percent chance of recurrence.
Patients diagnosed in Stage 3 have a 70 to 90 percent chance of recurrence.
Patients diagnosed in Stage 4 have a 90 to 95 percent chance of recurrence.
I look at it as I've had OC 3 times, with 3 surgeries, with chemo therapy each time - could it come back, yes. IF it does, I will decide then whether I go thru treatment again or not.

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cjb63 | @cjb63 | Jul 16, 2023

I have stage IIIC uterine cancer. I had a complete hysterectomy which showed the cancer had spread to my sentinel lymph nodes (hence the stage III), but my tubes and ovaries were clear. My pre-chemo CT scan was clear.

I am between my 4th and 5th out of 6 cycles of chemo and I now need to decide whether or not to follow-up with radiation therapy. My medical oncologist (University of Iowa Cancer Center) feels that since radiation therapy will not increase my life expectancy, that the side effects of radiation therapy are not worth the benefit (benefit = a reduced risk of recurrence at the vaginal cuff). If I have a recurrence in the future I should just treat it at that time.

The two radiation oncologists that I've consulted with (U of I and Mayo) both recommend 25 external radiation treatments, with Mayo adding 2 brachy (internal).

I'm age 60 now and tolerating my chemo well. I've met my insurance out-of-pocket maximum, so treatment yet this year would be at no additional cost to me. On one hand, if it's not necessary and just overkill, I don't want to subject myself to the potential: scarring of my colon, bladder, etc; permanent incontinence; need to use a vaginal dilator for the rest of my hopefully long life. On the other hand, I feel I'm more equipment to handle radiation now than I might be if I have a recurrence at age 70 or 75. The treatment, should I have a recurrence, is radiation therapy, but probably at a stronger dose and/or a greater number of treatments, resulting in greater trauma to my colon.

I apologize if this should have been a separate post, rather than a comment on this existing conversation regarding recurrence. I would greatly appreciate input from those of you who have had recurrance or have had to make a similar decision as me. Thank you!

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2 replies
cialonel | @cialonel | Jul 17, 2023
In reply to @cjb63 "I have stage IIIC uterine cancer. I had a complete hysterectomy which showed the cancer had..." + (show)
@cjb63

I have stage IIIC uterine cancer. I had a complete hysterectomy which showed the cancer had spread to my sentinel lymph nodes (hence the stage III), but my tubes and ovaries were clear. My pre-chemo CT scan was clear.

I am between my 4th and 5th out of 6 cycles of chemo and I now need to decide whether or not to follow-up with radiation therapy. My medical oncologist (University of Iowa Cancer Center) feels that since radiation therapy will not increase my life expectancy, that the side effects of radiation therapy are not worth the benefit (benefit = a reduced risk of recurrence at the vaginal cuff). If I have a recurrence in the future I should just treat it at that time.

The two radiation oncologists that I've consulted with (U of I and Mayo) both recommend 25 external radiation treatments, with Mayo adding 2 brachy (internal).

I'm age 60 now and tolerating my chemo well. I've met my insurance out-of-pocket maximum, so treatment yet this year would be at no additional cost to me. On one hand, if it's not necessary and just overkill, I don't want to subject myself to the potential: scarring of my colon, bladder, etc; permanent incontinence; need to use a vaginal dilator for the rest of my hopefully long life. On the other hand, I feel I'm more equipment to handle radiation now than I might be if I have a recurrence at age 70 or 75. The treatment, should I have a recurrence, is radiation therapy, but probably at a stronger dose and/or a greater number of treatments, resulting in greater trauma to my colon.

I apologize if this should have been a separate post, rather than a comment on this existing conversation regarding recurrence. I would greatly appreciate input from those of you who have had recurrance or have had to make a similar decision as me. Thank you!

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I am sorry you are facing these tough decisions. Unfortunately I am at beginning of my journey and can't offer you any useful information. I am 63 and just starting chemo soon. If you don't see any responses here in the next day or two I would suggest creating a separate post. Best of luck to you. ♥️

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cipnsue | @cipnsue | Jul 17, 2023

I encourage you to look at https://www.sharecancersupport.org/ for info and support with uterine cancer. I am part of an Ovarian Cancer support group. We help new patients understand the disease and support each other as we go through treatment and after treatment. Share has support groups too.

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mrsbird | @mrsbird | Jul 18, 2023

Well exactly the same here.
My reoccurrence was within 8 months.
I have been researching various additional options going forward to discuss with my doctor. First post treatment appointment Friday.
I have your thoughts too regarding reoccurring. I think we all do
Cheers

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