Has anyone had a recurrance of endometrial cancer to lung?

Posted by gaylepc @gaylepc, Sep 23 9:32am

had stage 1a grade 1 endometrial cancer 9 years ago. I had a full radical hysterectomy, and the Dr.s felt there was virtually no chance it would return. No chemo or radiation was suggested or offered. Nine years later I started to cough blood and after loads of tests, it has been determined that I have an endometrail tumor in my lung. It is not operable due to the position it is in, so they are looking at radiation, if my lungs can take it ( I have moderate emphysema), and chemo. I have been told it is not curable but treatable, and the impression I have at this point from every Dr. that is involved is that I likely have years to live, but will always be a cancer patient.

Is there anyone here who has been through this, or is livin with a similar diagnosis? I am scared, sad, and angry all at the same time. This was not supposed to come back.

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

gaylepc | @gaylepc | Oct 1 4:29pm

In reply to @naturegirl5 "@gaylepc No, no specific thread. Just whenever you read someone else's post here and want to..." + (show)

Oh I understand now, of course I will do that! I have my simulation a week from tomorrow, and I suspect that once they have done that, they will schedule the actual radiation quickly. Dr. Volpp said we will move forward quickly, which is great!

Helen, Volunteer Mentor | @naturegirl5 | Oct 1 5:11pm

In reply to @gaylepc "Oh I understand now, of course I will do that! I have my simulation a week..." + (show)

@gaylepc Good news!

gynosaur42 | @gynosaur42 | Oct 2 6:26am

On a short time clock here, but want to add my celebration to your good news, @gaylepc !!!

Having clear information about a path forward, and feeling supported by a team is unbelievably helpful, and I'm so glad it's boosted you.

I'll stay tuned to hear how this unfolds for you, @gaylepc

Sending cheers, hugs, back pats and attagirls to you, and adding my hope to yours,

@gynosaur42

gaylepc | @gaylepc | Oct 4 3:29pm

In reply to @gynosaur42 "On a short time clock here, but want to add my celebration to your good news,..." + (show)

Thank you so much!

riverland889 | @riverland889 | Oct 20 9:18am

In reply to @naturegirl5 "@gaylepc After 9 years I expect you might have felt cancer would not be in your..." + (show)

I had endometrial cancer and radical hysterectomy 4 years ago; no radiation or chemo; then last year I had a recurrence in the vaginal cuff; had external radiation and (really tough) brachytherapy. Last treatment July 2023; now it's come back again.!!! Waiting to see what Drs want to do.

gynosaur42 | @gynosaur42 | Oct 21 6:02am

Oh, @riverland889

I am so sorry that you are facing another recurrence!!! What a terrible shock after you've endured so much already and had (I am imagining) gained some hope that it would be enough. I am behind you on this road, but fully aware that this is one possible future for me, as well. I can only imagine what this is like for you now.

And, here you are, waiting for some clarity on what options are possible for you. I am leaning in to hope that your team, and whatever resources you and they turn to for additional information and guidance, can factor in the ways that the previous round of treatments impacted you and come up with some choices that feel viable for you now. I hope your wait for that is not long.

I can imagine that it is a gargantuan task, to stay "calm enough" to keep your wits about you and to face forward and re-face forward each time this current situation naturally pulls you back into memories of what was barely tolerable before. In fact, allowing yourself some time to be a human with their hair on fire, raging, screaming and flailing, might be helpful. I also hope that you have or can garner enough support, including this group, to anchor yourself in whatever sustains you in the present, to face forward and re-face forward so you'll be ready, when information is available, to make choices that feel right for you.

With great care and much hope,

gynosaur

riverland889 | @riverland889 | Oct 21 7:23am

In reply to @gynosaur42 "Oh, @riverland889 I am so sorry that you are facing another recurrence!!! What a terrible shock..." + (show)

Thank you for your kind and thoughtful words. I do have a great team of Drs. Have you heard of the Signature blood test? DNA is taken from my tumor (last year) and blood test created "for me" to find that DNA. This is how the most recent recurrence has been found (may not be recurrence just same but didn't totally go away). I had a PET and an MRI last week, which are now being compared to the past ones I've had. The scans are confusing and I have no symptoms. One thought Drs have is what the scans show may just be scar tissue. If so, why the positive Signature when past ones were negative? There is talk of possible Cyberknife treatment and immunotherapy. What may be there is very small and a good prognosis, but something I may just have to live with. Periodic screenings, blood tests, etc. Seeing Dr today. Will follow up.

cjacobs99 | @cjacobs99 | Oct 22 9:35am

I was diagnosed with Epithelioid leimyosarcoma that originated in my uterus in 4/2022. The cancer metastasized to my lungs immediately and I was given 9-12mths to live. I’m still here living with cancer because doctors deemed it incurable. Since then I have treated my lung tumors with SBRT (direct targeted radiation, chemotherapy (Doxorubicin, Gem/Tax) and lung surgery). All of these treatments were successful in removing, shrinking and stabilizing the tumors but due to this cancer’s aggressive nature I had another reoccurrence this year. Surgery is always my best option, so I would seek multiple options with a Thoracic surgeon before closing the door if you haven’t already. You didn’t say how large the tumor was mine was over 5cm when removed. My sarcoma specialist Dr. has seen patients have tumors surgical removed at 17cm. Location is key. But other options like SBRT and PEF (Pulsed Electric Field) ablation can be successful for larger lung tumors. PEF is a new technology offered by Galvanized https://galvanizetx.com/aliya-system/. I heard about it through Stanford which is where I’m treated. Chemotherapy was successful in shrinking and stabilizing tumors but it does not remove them completely.

I wish you the best of luck in finding a treatment option that will best suit your needs. Always ask questions, push back if you don’t agree with something or seek a second opinion. This is your life and it’s worth fighting for. Doctors don’t know everything and base everything on past practice and stats but there are underliers who defy the odds everyday. I’m living proof of that!

gaylepc | @gaylepc | Nov 11 1:14pm

In reply to @cjacobs99 "I was diagnosed with Epithelioid leimyosarcoma that originated in my uterus in 4/2022. The cancer metastasized..." + (show)

I am not a candidate for surgery due to COPD. I have finished my SBRT, now the wait to see if they got it all. I am praying they did. Thank you for sharing your story. It is so helpfu to hear from others who are dealing with this same monster, and living with it.

Helen, Volunteer Mentor | @naturegirl5 | Nov 11 5:23pm

In reply to @riverland889 "Thank you for your kind and thoughtful words. I do have a great team of Drs...." + (show)

@riverland889 I haven't heard about the Signature blood test. I have my next cancer surveillance appointment on November 19 and I'm going to ask about this.

I have been having CT scans every 8 months after a recurrence in 2021. I'm now moving to longer periods of time between visits and a CT scan annually.

It's good to hear that you have a skilled and trusted cancer care team.

You indiated that you saw your doctor on October 21 in your last post. Would you be comfortable sharing your results of that appointment?

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