I was diagnosed with stage 3C1, grade 3 endometrial cancer October 2022 and had surgery, chemo and 25 sessions external radiotherapy. I haven't been put on maintenance medication to prevent recurrence.
Is this usual? Are others in this position? I live in the Uk.
I am on Anastrozole for maintenance because my tumor was estrogen receptive. It is an estrogen suppressant. When my doctor prescribed it she said she was ‘borrowing from the breast cancer literature’ and said I’ll take it for 5 years. I hope this helps you have a more specific line of inquiry for your doctor about maintenance meds.
Thanks, I'll ask about Anastrozole at my follow up in November. Can I ask you what the side effects are like?
I dont have any. Good luck.
That unfortunately is the standard of care for endometrial cancer. I wasn’t put on maintenance therapy until after my second recurrence
So, there is maintenance therapy but they don't put you on it until it reoccurs!!
Is that because of side effects do you think?
I have also wondered why there are no maintenance drug protocols or clinical trials for this post treatment time period. Maybe instead of waiting for the random cells to metastasize & show up on a CT scan, maintenance medication might avoid a life threatening recurrence? We really need to see more research into endometrial cancers!
can I ask you how long you was cancer recurrence? After three years or more.
I’m not in any medication.
But I been experiencing cramp pain, did a CT scan and nothing abnormal.
Do u experience something like this? I think are my nerves that produce this pain, but I’m worry all the time.
My first recurrence happened 8 months after my initial surgery. I felt like I had an UTI but I did not. A CT scan showed the recurrence on the vaginal cuff. I had chemo after the tumor was removed. My second recurrence was 11 months after I finished chemo. I had an attack of diverticulitis and the CT scan showed the tumor in the same place. At that time I did Keytruda and Lenvima for 10 months and the cancer actually spread to my lungs. At that time I did 6 carboplatin/taxol/Avastin treatments, then continued with the Avastin for the last 14 months.
Barbie, sorry to heard all this.
My endometriosis was located in the vaginal cuff too, stage 2,
Did brack internal radiation 3 times and 25 external radiation, was all, no medication after…
I was feeling fine until last March started to experience cramps pain, like my period but right on the middle, down my belly.. but I did the ct scan and don’t show anything .. but the cramps don’t stop, I think are my nerves that produce it..
Thank you for answering..
My blessings to you for a speedy recovery
I agree. I don't want to wait for it to show up on a scan, I'd rather be proactive.
I'm on pembrolizumab as maintenance after diagnosis with Stage IIIC2 endo last year. Had chemo x 6, declined radiation. Ask your oncologist about immunotherapy and discuss results of RUBY and NRG GY018 trials. You should not have to wait for recurrence! All best and sending healing energies!
Uterine 3 a. I also declined radiation after chemo. (I only had 4 brachytherapy which made sense for me, to have a target to radiate). I am not on maintenance; I presume because I'm NED. I'm going to ask about this at next Dr meeting. Most people I read about do chemo and external radiation.
I had a full hysterectomy followed by chemotherapy (doxorubicin and Ifosfamide), and no radiation.
Sounds like your uterine cancer was a sarcoma, which is much more high risk, resulting in the need for high-potency chemo. I had soft tissue sarcoma in my leg back in 2010, and that’s the chemo they gave me, which is the toughest type of chemo to get. My breast cancer chemo of taxotere/cyclophosphamide was a walk in the park compared to the chemo given for a sarcoma. Thankfully, no chemo was prescribed for my Stage 1A/Grade 3 endometroid uterine cancer—just brachytherapy.
Thank you, I will ask. Wishing you good health!
I've not been told of any medication after completion of chemo and radiation, but perhaps that's because mine was grade 1, or perhaps it's because mine is not the genetic kind. While I'd do whatever was recommended, I'm kind of looking forward to being done with treatments after radiation. Best of luck for no recurrence, with or without medications!
Hi,
Depending on the make up of your cancer, there are "maintenance treatments" available. My dr doesn't believe in calling them maintenance, but he calls them part of a well managed care plan. My cancer was originally Stage 1B, grade 3.
Without knowing details about your cancer, I can only share my experience. I am on Ibrance and anastrozole, an aromatase inhibitor for ER+ PR+ and HER2- endometrial cancer after two recurrences. I have been in remission for over 5 ½ years and my doctor calls it well managed cancer. After the first recurrence, I was just on anastrozole for maintenance for 6 months before the 2nd recurrence.
This regimen is usually prescribed to breast cancer patients, but my dr had been a breast cancer onc who was conducting the clinical trials for Ibrance before he became a gynecological cancer hematologist. When he prescribed this regimen, I don't believe the other drs believed it would work. I was introduced by my other doctor to a fellow as a "miracle of modern medicine"! This treatment is being used in the UK and in Europe, by the way.
After the 2nd recurrence, I had genomic testing for the variants in the genes in the tumor. That is how the doctors can personalize your treatment.
Knowledge is power. The more you know about your particular cancer and the latest research, the better you can advocate for yourself.
Check out this site for some informational webinars & other education about Uterine Cancer. sharecancersupport.org/uter... If your cancer is hormone based, I also recommend checking out the breast cancer site as well.
Best wishes.
Thank you for this info. In my case, I don't think there are many options if mine recurs. (Uterine 3a carcinosarcoma) I had genomic testing with few applicable mutations. Also E and P negative. I don't know about HER2.
Hi,
May I ask what your original treatment consisted of and how soon did you have your first recurrence? Thanks - I’m Stage 1b grade 3 as well.
Thank you!
Hi,
The first treatment was a hysterectomy and brachytherapy to the vaginal cuff. For the first recurrence, the treatment was external beam radiation and chemo - the anastrozole is an aromatase inhibitor that I took after treatment . For the 2nd recurrence (a desmoid tumor in a stomach muscle and was the result of contamination from the hysterectomy) they did brachytherapy and added Ibrance to the anastrozole.
The cancer recurred in September, after my original post. It was in the vaginal cuff in a part that wasn’t treated before. It was caught early and treated with very localized brachytherapy. Still on Ibrance and anastrozole and waiting for the new genomic tests and the ctDNA results to see if we’ll be changing anything.
Thank you so much for getting back to me so quickly. I had the total hysterectomy / external radiation 5 weeks / 6 chemos / 3 brachytherapy. I did get tested for Lynch syndrome and was negative but found out my tumor was a mismatch. I have an appointment with my oncologist Wednesday and I am really interested in talking about ‘well managed care’ with her.
Mismatch or dmmr could make you a good candidate for immunotherapy. But if you do not have cancer now, I think the dr may wait for a recurrence.
Again thanks for your response. How long after your initial treatment until you had a recurrence? Also it’s awesome to hear you have done so well with treatments!
18 months - localized to two pelvic lymph nodes, probably minimal residual disease (meaning that the cancer was probably there before, but not visible, even in the scans)
Hi - sorry another question. My CT showed a small non enlarged left common iliac chain lymph node measuring 0.7 x 1.2 cm (now) previously 0.7x 0.8 cm (12/22). Doctor is going to repeat CT in 3 months. Have you experienced anything like this or know anything about this? Guess I’m wondering if I should advocate for a PET scan now. Thanks in advance for any info you might have.
I think it's reasonable to advocate for a PET/CT scan, however, it's hard to know if your doctor will do it. The trend is to not do that many scans - long story. Here's the info on that: ascopubs.org/doi/full/10.12...
My first recurrence was in two iliac (pelvic) lymph nodes.
Here is the update to the story of my latest recurrence: I am on Ibrance and anastrozole to prevent recurrence of er+ pr+ her2- endometrial cancer for the past six years. Ibrance is a pill that you take for 3 weeks on and 1 week off. But the current dose began to get toxic (blood counts in the toilet) for me last spring. So the doctor had me take an extra week off. As the cycles progressed, I had to take more and more time off. Because my doctor was out of town for personal reasons, no one would lower my dose. So, a recurrence shows up in my PET/CT scan in early Sept. Then, I was treated with brachytherapy and off Ibrance for an entire month (but always stayed on anastrozole). Next scan on Dec. 11.
But here's the kicker: the genomic testing came back and my onc called me yesterday. There were NO NEW MUTATIONS and no changes what-so-ever! It's still an er+ pr+ her2- tumor with the mutations to match. The tumor was considered not dense and possibly not enough there for an accurate read. According to my dr, there was no reason for the cancer to return mutationally, so no new targets. Either the genes that made it recur are unknown now or the extended time off of Ibrance started it off.
I think it's the later. I also think that Ibrance actually did its job. From the Metastatic Breast Cancer ladies, I see that many of them start off with tumors and Ibrance shrinks them. In my case, I did not start off with a tumor, so I think that when one started to show up, it was getting zapped by the Ibrance when I was able to take it.
Now the dr has changed my dose of Ibrance to the lowest (and next level), so that I won't have issues with bad blood counts and will be able to take it more consistantly again. I think that if they changed my dosage earlier and waited to treat me, the tumor would have gone away on its own. I wish this had happened.
Hi - I so appreciate you taking the time to correspond with me and I am sorry about your recurrence. Am I correct in thinking you had a long period between your first recurrence and second one ? Also are you saying you now wish you had only taken the Ibrance. Do you think for me there is any advantage to wait the 3 months and do the CT scan vs trying to get the Pet scan and possibly by a different doctor?
Thanks for your time.
When you were you last treated? The usual protocol is to scan every three months after treatment, for two years, then every six months after that. Some drs continue annual scans starting at 5 years.
I had a short period between my first and 2nd recurrences - 6 months. But almost 6 years between the second and third. I wish they had waited to do the brachytherapy for the last recurrence. I think the change of dosage and consistancy of taking Ibrance at the lowere dose, would half kicked tumor to the curve. They could have waited to the three month scan after the one that found the third recurrence. If that didn't work, they'd still have time to treat the tumor.
Is your reason for waiting on the brachytherapy because it can’t be used again? I’m just learning all this and my doctor seemed to do everything right of the bat. Now wondering some about that. I was endometriosis carcinoma - 76% myometrrial thickness and positive for lymphovascular invasion extensive which decided the Grade 3.
Yes, they can’t us it in the same spot. My men was grade 3 too. There are two webinars coming up that may be helpful for you.
from SHARE - Understanding Uterine Cancer Treatment Options
sharecancersupport.org/unde...
from NCCN:
nccn.org/patientresources/p...
Both are free.
I am on Anastrazol for Her2positive+ breast cancer for 10 years. I been taking it for 7 years with very little side effects I am not Her2positive+ on my stage 1b grade 3 endometrial serous cancer diagnosis in 5/22 treated with laparoscopic hysterectomy, 6 rounds of chemo with 3 braca . In September 23 I had reoccurrence on the vagina. Now I had 30 rounds of EBRT and I have 3 more to go. They stopped the radiation 2 week ago because of the burn and pain. Waiting for healing and lessening of the pain now
Ouch! Is the two week break helping you heal?Are they able to give you something topical to help you feel better?
My thoughts and prayers are with you, friend.
Thank you. Hopefully I will finally get the narcotic cream that was prescribed a week ago. During the holidays and the fact that it is a narcotic, getting the medications is really a hassle.Even MSK pharmacy couldn't do it because it is a compounded substance and only special pharmacy does that . Hope to finally have a chance to use it and it will take some of the pain away.
how is your pain doing now? I have done 22 of my 25 EBRT and I'm so done - the pain, burning, diarrhea and fatigue is a LOT! I sailed through chemo - traveling, taking my daughter to 2 day (12 hour a day) music festivals, playing 2 hour pickleball games, etc. - but this radiation is kicking my butt!
Four weeks after I stopped EBRT.(I had 30 treatments and needed 3 more but the pain and burn was too much.) I started to feel less pain and the burn stared to heal. I was not able to apply the narcotic cream to the wound because it burned too much . New skin is growing and the open wounds area is getting smaller daily. What a miraculous body we have.I am still on Vicodin because I am getting a MRI today and a PET scan on Tuesday so I want to be able to stay still for the tests the I plan to start to reduce the pain killer. I still have pain but not at level 9-10. Maybe level 6.I see my medical oncologist after the tests and then I will know more of what to come.
Since my cancer could be seen on my vulva I know that it did not go away and I see that it started to grow again. It did shrink after the 3rd week of radiation.Hang in there .Things will get better.
There's lots to think about and read up on there. Thanks for your advice. I definitely need to understand more about my particular cancer.
Hi, I am an 8 year survivor of stage 1A, serous endometrial cancer. While my cancer was discovered in a very early stage, the Grade 3 serous is what prompted my doctor to recommend chemo/radiation. In July 2015 I had a robotic hysterectomy, plus 6 rounds of chemo and 5 rounds of brachytherapy. My CT scans post surgery showed NED and my GYN exams have been fine.
I am not on any medication and was told by my physician after completion of treatment to watch for symptoms, pain or anything unusual. While I was in treatment, I felt the chemo and brachytherapy were doing their job of killing the cancer cells. After treatment, to some extent I felt I was out there on my own waiting for the other shoe to drop. While I have not had a recurrence, it's always in the back of my mind.
What I learned is that we can't necessarily depend on the physicians and others in the medical community to advise us about every aspect of this disease and that we must advocate for ourselves and find out everything we can about our particular type of cancer. This means getting second opinions if necessary, especially if we are unhappy with our medical team or feel they aren't responsive to our questions or needs.
I agree with Merma. You may find our SHARE support groups helpful. Our meetings are every other Monday night from 6PM-8PM ET.
sharecancersupport.org/cale...
We are a group of women which includes those who are newly diagnosed, those currently in treatment and those who have had uterine cancer. We support each other by answering questions and sharing experiences.
Wishing you all the best in your recovery.
Kathy
I am uterine 3a carcinosarcoma. Surgery and brachytherapy. Currently NED. No maintenance offered. I wonder also about this. I'm sure we'd be trying something else if a problem were to arise.
Are you scheduled for a CT scan soon? Or at least a blood draw to check your CAL? I have carcinosarcoma of the uterus also.
Unfortunately, recently I recurred which was identified by CA-125 increase. CT scan and biopsy confirmed. I have had 3 chemos again and CA-125 rapidly decreasing. Scans will be soon and then "we'll see" how things look if adding something to the continuing chemo regimen. Carcinosarcoma is highly aggressive and needs prompt attention at every step.
Hello. My mum had a recurrence of endometrial cancer and was offered and accepted Atezolizumab which is an immunotherapy drug. The 2 year programme has finished now but she was offered this as part of a trial for 2 years. Hope this helps xxxx
I have been on anastrozole for breast cancer since January 2018. My hormone-positive uterine cancer symptoms started in September 2022, and I had my hysterectomy and brachytherapy for that. I don’t think my gyno oncologist cared whether I was on anastrozole or not. Also, my breast cancer oncologist is keeping me on anastrozole longer than 5 years and, when asked, she said the extended treatment time has nothing to do with my uterine cancer. Go figure!
Same story except I had breast cancer in 2016. Her2positive and still on anastrazol. Diagnosed with endometrial serious cancer 1b grade 3 in May 2022. Had robotic hysterectomy so 6 rounds of chemo and 3 Bracha therapy. finished by September 22. Had a great year of NED.Now reoccurrence on my vagina. I am having 33 EBRT. Only 1/3 done . Praying that it will eliminate all the cancer in the area.
So sorry you’re going through this. I wouldn’t be surprised if that will be in my future. I had a serous polyp removed before my robotic hysterectomy, but the cancer in the uterus itself (1A) was determined to be endometroid with enough irregular cells to classify it as grade 3–just 3 brachytherapy sessions for treatment. I’m always waiting for the other shoe to drop.
Anastrozole is an aromatase inhibitor. Aromatase changes the fat into a form of estrogen. So anastrozole inhibits this action. Sounds like your breast cancer was also hormone based. You can ask your GYN ONC about taking a cdk 4/6 inhibitor. I think that it is ridiculous that when both cancers are hormonal, you have to go to two different oncologists. They should actually be working together. But in these days of ulta-specialized medicine, that's the way it is.
I would talk to your oncologist about your concerns. Are you scheduled for a CT scan and how far out is it? I'm not sure what's normal for your cancer. But at that stage, I would assume some maintenance is in order.
I had the same diagnosis and after chemo and radiation 3 years ago, I was not put on anything for maintenance. I think depending on the type of cancer, or a recurrence, that is standard.
By the way, I think most, if not all, of us are always worried about recurrence. Very normal for what we're going through.
Yes! The fear of recurrence of my high grade, aggressive cancer is what keeps me up most nights. I am grateful for the times I have with family & friends, but the gray cloud follows me most of my days. Our staging and journeys are all different, but the concerns and worries are similar. A cure for cancer is way overdue.
I had my 1 year post diagnosis scan in October and I'm pleased to report that I'm NED. I hope to stay that way and wish you all a Merry Christmas and a Happy and Healthy New Year! Xxx
