Metastatic endometrial cancer in the lungs - treatment

Hello Madam T

I am really sorry to hear that you have had a recurrence of your endometrial cancer in your lungs. It must have been very hard to be told this 5 years after your treatment and a real shock. If you feel like talking it through with someone would help, then please do give the Support Line a call. The number is at the bottom of this.

I had chemotherapy last year and had paclitaxel and carboplatin. It was not easy at times but it was doable with the support from family, friends and the ladies on here. I also had a good nursing team which did make a difference. For me the idea of having chemotherapy turned out to be worse than my actual experience. I did have some side effects, but on the whole they were managed by medication. 

I hope that your chemo treatment helps with the lung tumours and that you do not have too many side effects. If there is anything that you want to ask or need, then please do so. There are lots of lovely ladies on here who have different experiences with womb cancer who will want to offer you support.

Jane

Hi Madam T. My Mum also has lung involvement 

Hi Madam T, 

My Mum also has lung involvement in both lungs where nodules were seen. She received an initial diagnosis of Endometrial Cancer in May 2022 and had a hysterectomy in July 22, followed by Radiotherapy in the late November 2022 and in January was informed that she had a recurrence which seemed to happen very quickly. She started 6 rounds of chemotherapy in March 23 and ended in July 23 she has been informed that there has been a reduction in the tumours at follow up CT scans and is due to have another scan in the next few weeks. Her initial symptom was an enlarged lymph node in her neck, she didn't really have any respiratory symptoms that would have been expected with lung lesions. It came as a shock as it all seemed very quick. The lymph node in the neck reduced significantly during chemotherapy.

There was some mention about potential immunotherapy also for my Mum via a clinical trial although I think that immunotherapy can be available to some people outside of the clinical trial setting. Hopefully your team will be able to explore this further with you and hopefully be able to offer you some reassurance and answer any questions that you have.

Take care

Hello MadamT I am sorry to hear this. I am very early on my cancer journey and due to have 4 weeks of radiotherapy most likely in 4-5 weeks. I am learning a lot so far and there seems to be different types of treatment for different situations. This must have been a massive shock for you and I hope you get answers to any questions you have. More than that I wish you well with your treatment and will be thinking of you.

Hi latching onto this thread. First of all very sorry to hear of your diagnosis. My wife had a very similar diagnosis. There’s never any good news, but we have been going through this for over a year and a half. Following chemo reduction in tumour/nodes on lungs. Feedback from various oncologists is that those who have this type of cancer, five years or more after initial cancer, see very slow progression. My wife oncologist told her last week she has a patient who has been living with it for 10 years.

question to the wider community: my wife last had treatment in January 2023. Various scans are showing no progression. Advice from oncologist is wait until it comes back, which seems counter intuitive. Why not continue treatment and reduce tumours/nodes further?

 Anyone with this experience?

Hi James, sorry it took me a while to come back to the thread but I wanted to thank you for your very positive post.

I completely agree about it feeling counter intuitive to wait for it to come back but there seems to be no hope for a cure, just remission.  I'm interested in the ketogenic diet to see if I can keep going in the right direction once the chemo has finished but I know that can only be short term.

I hope that your wife continues in good health.

best wishes, MT

Hello. Have picked this up quite late so sorry if not relevant. I had recurrence in lungs diagnosed in February 2023. Have had chemo to reduce tumour size and in December SABR radiotherapy. I am due to have a scan soon to see if it has worked but radiotherapy were optimistic so hopefully it has. Hope you’re doing ok now? I am getting there but radiotherapy has made me fatigued- hoping this will gradually improve 

Hi Madam T, I am in almost the same exact stiuation as you. in 2015 I had endometrial cancer and a complete hysterectomy. I was staged at 1a. No chemo or radiation, they didn't feel it was necessary as they were so sure they got it all. All my pap tests and scrapes have been NED, and I have been good about getting them.

9 years later, I started coughing blood. I have had CT scans, PET scan, bronchoscopy and CT guided biopsy. Drs. were sure it was stage 1b primary lung cancer, until the biopsy which shows it's a recurrance of my endo cancer, but in my lung. 

I am terrified and astounded. This is so rare for it to show up this late. I literally am in a 1% bracket of recurrance, it's that rare.

I am hoping and praying for the best possible outcome for the both of us, but completely understand your fear.

Hi gaylec

I am really sorry to hear of your recurrence after such a long time. It must be a very scary time. Have you been given a treatment plan yet? 

Please do call the Support Line if you feel it would help to talk things through with someone. The number is below.

Jane

I don't have a tratment plan yet. The Dr.s are consulting on that now. I am sure it will involve chemo and radiation.