Newly diagnosed

Hi, welcome to the group! I have an autoimmune thyroid disorder - for my endometrial cancer I had a hysterectomy in Jan 2022 and then 25 x radio and 2 x brachy. 

Hello,

Thank you very much for replying.

Did the treatment for cancer  interfere with your thyroid control medication. Did you have to take anything to keep the immune system in balance?

Hi again Cat66, no it didn’t at all - my thyroid levels were checked on full blood counts and my meds stayed the same. About six months after the end of radio my white cell count was very slightly down (as in very slightly below normal) - I had repeat blood tests every 6 weeks for 2-3 months and they came up to normal again. That may or may not have been connected with the radio and could have been down to having had Covid in August 2022. 

Hi Cat66

Welcome to the Womb group. I am sorry to hear of your diagnosis of a grade 2 endometrial cancer. I can remember how scary it can be. 

Hopefully your appointment with the consultant will come through quickly. I would expect the next step to be a CT or MRI scan to stage the cancer (if you have not already had one) The biopsy shows the provisional grade (type) of cancer and the stage shows whereabouts it is. 

For most ladies the first line treatment is a hysterectomy unless there are medical reasons not to. 

I am not sure how your liver condition would affect having surgery but I am sure it is something that the consultant can go through in more detail with you. 

I will pop a link below to some general information that you might find helpful. It may help to have a look before your appointment to help give an idea of what you may want to ask the consultant about.

Womb cancer booklet | Macmillan Cancer Support

Being diagnosed with cancer is a stressful time and we do have a Support Line available if you feel like talking things through would help.

Please also do also continue to use the forum if there is anything you want to ask about. There are lots of us on here who will want to offer you support. 

If you click on my name my profile will come up- but I had endometrial carcinoma sarcoma back in 2022 and am doing ok now. 

Jane

Hello,

Thank you for sharing your experience)

wish you all the best!

Hello Jane,

Thank you for your support.

I do not know yet what is going to happen regarding the treatment, as I only know the grade, 2.

i have a bout with endometriosis for about 20 years. It had been always thick and my ca125 raised to 900 at some point.

i have endometriosis and adometriosis. But it never been much of a problem for me. My periods were normal, regular and not too painful.

My gyno took a follow up approach and , not even a biopsy. When I was 55, he gave me, elagolix, stopped my periods with 2 years, never even had menopause symptoms. My ca 125 went down to 13-20, and estrogen went down. I officially became menopausal. Endometrium became thinner, 0.35.

i was on yearly surveillance with ultrasound in place. In 2022, there was a 6 mm polyp, that gyno decided to observe. 2023 I was diagnosed with PBC. When I went to see my gyno, he said that there was no change in polyp size based on US, and since I have PBC just diagnosed, he didnt want to do any procedure. 2024 October, 4 months before my US and appointment I noticed tiny discharge that I didn’t have before and 2 months after little blood. I was trying to get an earlier appointment, but I was told to wait till my appointment in January. Two weeks before my us and appointment I started really bleeding, for a day, and then drops only,

us found 22 mm polyp.

And what I found out that my gyno in 2023 missed my results( my polyp was 12 mm) as he looked at the old results. So my polyp grew 4 times in 2 years. What makes me sad that I was under surveillance and this was missed!!!!! And I was so busy fighting for my lliver that I did not verify since I trusted my gyno who was following me for 15 years.

Now I am very anxious how all this went, considering such a substantial growth with 2 years.

I apologize for such a long essay, I am happy I could share with others who are in the same situation.

No apologies needed and it does help to write it all down and share with others who understand. 

For a grade 2 endometrial cancer surgery is normally the first line treatment although I do not know how your liver would affect this. Sometimes hormonal treatment can be used but this is normally for a grade 1, stage 1a cancer. 

The hormonal treatment can be in tablet form or via a mirena coil. 

For early stage and grade cancer the hysterectomy alone may be enough. If you do go on to have surgery, it is the post op results that are important in deciding whether any follow up treatment is needed. For me it was chemotherapy and radiotherapy. 

However with the liver disease I am not sure how this would effect treatment choices but just showing you that there are plenty of options to treat it. Some ladies do get offered other treatments such as immunotherapy or targeted therapies further down the line. 

I can understand your anxiety and frustration because this was missed despite being under surveillance. 

Jane

Hello Jane 

Thank you!

I didn’t believe that it will a surgery first.

my concern is the chemotherapy as it is flushing through the liver.

i guess I ll have to work with my liver team at the same time.

i did get a call and i am scheduled for an US and blood tests followed by an appointment with the oncologist, all next week

I am surprised that CT scan was not scheduled 

but I will know more next week 

thank you for listening)

I have autoimmune disease, along with EC. I have lupus, sjogren's syndrome and fibromyalgia. It doesn't really affect the treatment so much as generally coping with yet more issues. I am on hormone treatment at the moment though and can't say about surgery etc...though I was told that my high inflammation levels might affect surgery later. Hope you get the answers you need.

Hello

And thank you very much for replying.

May I ask you if you had the surgery and if not is it due to the autoimmune disease?

Thank you