What to do when you get a recurrence of Endometrial Cancer In 6 months

lovemymom_ · December 5

My mom is my everything. She was diagnosed with endometrial cancer. She had a hysterectomy, & chemotherapy with paclitaxol & carboplatin. Was in remission for only 6 months post 5 cycles, she was supposed to have 6 cycles, but could not have her last cycle due to neutropenic fever putting her in the hospital, & since her scans were clear after 5 cycles of chemo, the Dr said she is in remission. But then 6 months later her cancer was found on the 6 month CT scan in her liver & not operable. Where is the best cancer center to get treated at this point for endometrial cancer recurrence post 6 months remission.? Or should we stick with UPenn only. She was also on Keytruda immunotherapy during her last cycles of chemo & up until now she was on Keytruda immunotherapy. The gyn onc dr stopped the Keytruda now that the cancer was found in her liver. She is currently with a gyn onc at UPenn. Her gyn onc there is a investigator for a new phase 3 clinical trial that will be starting late December or early January. This randomized phase 3 clinical trial is for Trodelvy. If she does not get randomized to Trodelvy, then she will be given doxorubicin. We live in the suburbs of Philadelphia, so UPenn is the closest. Should we be looking around for other clinical trials or start this one. Should we be getting another
opinion? A friend of mine said that there are clinical trial match services to find the best clinical trial for my mom. But what are the best match services? Are clinical trials the way to go at this time? My friend also said that maybe there are better cancer centers for endometrial cancer than UPenn? Is UPenn great for this or should we be going somewhere else too? Or just wait to see if she will be randomized to the Trodelvy, & hopefully not doxorubicin. I don’t know what to do now? I am overwhelmed & I am beyond worried for my mom. I love her so much, she is my everything.

MAbound · December 5

Dear Lovemymom,

I'm so sorry that you find yourself in this difficult place. Know that there is no harm and often much help given when you seek 2nd and even 3rd opinions from outside institutions as you navigate how to help your mother. Top hospitals in the northeast for endometrial cancer are Memorial Sloan Kettering in NYC, and Dana Farber and Mass General Hospital in Boston. You don't have to limit your options by what's closest, however, since places like the Mayo Clinic and MD Anderson have programs for remote opinions as do the NE hospitals I mentioned.

No good gyn oncologist should have any problem with you doing this and would likely appreciate the input if you continue your mom's care at UPenn. I've been going to DF for follow up care since I moved to the Boston area and can't say enough good things about them, especially if you pair them with Mass General that has a better liver cancer program than DF in my opinion. The two hospitals are affiliated with each other and so working with both is very doable. DF is the #4 ranked cancer care hospital in the nation and MGH is #5, but they each have their strengths and weaknesses when compared and I think the rankings are on pretty equal footing.

MSK is the #2 ranked hospital in the world behind MD Anderson and has really strong programs in treating both liver and endometrial cancer. It's closer to you and their streets are certainly a lot easier to navigate than Boston's convoluted routes. My daughter had a very aggressive squamous cell cancer on her tongue after college treated there and the care was top notch and they cured her. It blows me away how they talk of achieving some cures even with stage 4's depending on extent of metastasis. Never heard that said 8 years ago when my stage 3, grade three cancer was 1st diagnosed!

Hope this info is helpful and what you were looking for.

MAbound · December 5

P.S.

When you contact these institutions be sure to ask if part of the consult will include presenting your mom's case to a tumor board. That gets all of the doctors that might be needed to treat your mom in one place to discuss what is and isn't possible at the moment…(things can change depending on response to drug treatments). Also, if she hasn't had genetic testing yet, she could greatly benefit from that to guide her treatment, so you'd want to ask about that during a consult, too.

lovemymom_ · December 6

https://csn.cancer.org/discussion/comment/1719323#Comment_1719323

Thank you so much, & I send you many virtual hugs for your help!

During my online research today I found that Dr. Brian Slomovitz at Mount Sinai in Miami is very involved in trials for endometrial cancer & he completed his fellowship at MD Anderson. I tried to post his link but this site says I need to be around longer to post links.

I also found Dr. Brad Monk in West Palm Beach FL, who also is involved in gynecological cancer trials & his bio says that he also trained at MD Anderson & completed a Medical Genetics Fellowship at the NIH. I tried to post his information as well, but again, I cannot because I am new here.

Have you heard anything about them? Or is Dana Farber more advanced for metastatic endometrial cancer? If someone trained at MD Anderson is it good enough, even though they are not at MD Anderson now? Or should the patient actually be seen by someone currently at MD Anderson to get the newest research? I only looked at Florida as well because my parents have a condo in North Palm Beach Florida.
Mount Sinai in Miami is 2 hours from there. But there is always so much traffic so I would say 3 hours. & Dr. Monk in West Palm is about 30 minutes away from their condo. But I don’t know how the hospitals in North Palm / Boca/ West Palm / Jupiter , or anywhere in Palm BeachCounty are with any potential emergency. Because my mom did go into neutropenic fever during chemo, & UPenn was great to get her in while communicating with the on call dr over the phone & directly checked out at a special area for the UPenn cancer patients right away with a chest x ray immediately as well, & monitored in an area for cancer patients to see what is going on before admission without going to the ER.
We are based in the Philly Suburbs so we do spend most of our time north, but my parents like to spend Jan,Feb, & March in Florida. Last winter we did not go to Florida at all winter because my mom was doing chemo at UPenn, & the dr said we should not travel. And with these trials I am guessing it would be difficult to go back & forth from Philly to Florida. Or from Philly to Dana Farber might be even more difficult considering my parents do not have a condo there, & snow storm challenges. But I heard some people do it ? I don’t know how since her gyn onc Dr at UPenn told my mom not to travel while on chemo. But maybe it is different when you are in a clinical trial?
Dr. Monk in west palm beach fl has a clinical trial with an ADC agent by Merck that is similar to the ADC agent Trodelvy manufactured by Gilead that UPenn is going to start, & wants my mom to be in. But the trial at UPenn is not open yet. The UPenn Dr thinks by January it should start. Plus, as you know with these clinical trials it is not a guarantee to get the new agent. The trial in West Palm with Dr Monk with a similar drug, but by a different company has been running. But I do not know yet what she would be on if she was not randomized to the new study drug. I did email Dr. Monk today, so I am waiting to hear from him. At UPenn it would be doxorubicin if she is not randomized to the ADC study drug. I don’t know anything about what Dr Slomovitz in Miami has running now. I will have to contact his office for an appointment with him. I am hoping that all the brilliant researchers will continue to come up with new compounds soon 🙏, so that there are more options since the Keytruda immunotherapy did not work for my mom . & with the endometrial cancer metastasis to the liver, I am really scared that time is running out 🙏

Thank you again for listening!

MoeKay · December 6

If you're looking for someone in the Philadelphia area, you might want to look into Dr. Stephen Rubin at Fox Chase Cancer Center. My childhood friend was diagnosed with stage 4, grade 3, endometrial cancer in 2017. She was treated by Dr. Rubin and went through a number of different regimens, including participation in a clinical trial. While the trial didn't work for her, ultimately Keytruda put her cancer into remission. My friend has had no evidence of disease now for more than two years and she can't say enough good things about Dr. Rubin and the care she received at Fox Chase.

Wishing your mom (and you) all the best.

MAbound · December 6

My suggestions are just based on what I know, my personal experiences, and which hospitals have a particular expertise for uterine cancer within a reasonable distance. It does not necessarily mean that you need to travel outside of where you live for care. That gets expensive real fast. MoeKay has given a very good local option for you to look into. Fox Chase was ranked #33 in cancer care in general this year, but I don't know how much weight should be given to rankings. I was actually treated and cured of my cancer in Buffalo, NY before moving to the Boston area. Sometimes it's the doctor and his expertise that matters more than an institution. If you like and want to keep your mom's UPenn doctor, getting outside consultations, which can be done remotely, is a still a helpful option to consider. Check out MD Anderson's website for info on doing this (or MSK's) .

Did your mom have genetic testing done? Those results could help guide doctors toward care that would be the most helpful.

lovemymom_ · December 6

https://csn.cancer.org/discussion/comment/1719360#Comment_1719360

Thank you so much! Yes, she did have genetic testing completed. Now that it has spread to the liver while on Keytruda, the Dr at UPenn said she will not be cured, I am praying that she gets randomized to the new medication they are testing, & of course praying that it works 🙏

lovemymom_ · December 6

Thank you so much & it is great to hear success stories, & that some are blessed to have Keytruda help them. Unfortunately, Keytruda did not help my mom. Her endometrial cancer spread to the liver while on Keytruda. I pray that she gets randomized to a new medication they are testing, & of course praying that it works & that they continue to come up with new options for everyone! My mom is everything to me so I hope something will work🙏

Mercorby · December 19

Hi there,

It is very important that you know what kind of endometrial cancer your mother has. Estrogen and/or Progesterone Receptor positive or negative, HER2 positive or negative, etc. If the cancer is pmmr (mismatch repair proficient) or ms -stable, tumor burdon low, copy number low, ER+, HER2 -, PIK3ca mutations, and P53 wild type, there's a good possibility that the hormone path can help. Dr. Slomovitz (Mt Sinai in FL) and Dr. Konstantinopoulis (Dana Farber) have both done a lot of research in this area. There are clinical trials like the ENDOMAP and the EMBER that focus on these type of cancers.

The research for er+ and pr+ cancers is mostly done in breast cancer, so they are behind in getting us the same meds. This is my treatment path, most doctors don't give patients whose tumors have this molecular profiles these options because some of the drugs would have to be used "off label" and insurance may not pay for it. So, it's far easier to give chemo and immunotherapy which have a limited success rate on hormone driven cancers with this profile. The cost in money and side effects is very high.

This is why clinical trials are so important. Both the EndoMap and Ember trials are testing drugs that are being used in bc on ec patients.

By the way, 50% of the ec/uc fall in the No Specific Mutational Profile category for EC/UC. No other cancer has this molecular category. It's really crazy making. We thought my cancer had returned (but it didn't), but while waiting for all the testing, I tried to get on one of the new SERDS - five of them! None were available to me - only for bc patients. If push came to shove, and I really had a recurrence, I would have tried a bit harder and maybe have gotten on one, but who knows.

All this is to say, that you must know the specifics about your cancer to advocate for the best care. Endometrial/uterine cancers are a very heterogenous group of cancers. Knowledge is power.

Best wishes to you and your mother.

NoTimeForCancer · 12:44PM

mercoby, that is good news that it was not a recurrence! You have lots of good info there and a lot to unpack. LOL. My twin sister got in to a BC monitoring program because a number of factors and when she was talking to the PA was asked, "are you in the medical field?" Twinnie said no, just knows too much based on everything I went through. I think you show, we do have to learn a little about what we have because not only will no one else advocate for you, but you really do get a LITTLE more respect !

I followed most of what you wrote, but one that tripped me up was SERDS. Can you write that definition out for everyone (including me 😊)

What to do when you get a recurrence of Endometrial Cancer In 6 months

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