Endometrial Cancer Stage 3C1 Grade 1 -

Hi Laurie. I’m much the same as you. Initial referral in August 2024. Ultrasound showed 8mm endometrial lining. Hysteroscopy was unsuccessful so no biopsy able to be obtained. MRI  suggested stage 2 and surgeon operated on 25th November based on that.

2 weeks afterwards pathology said well actually no it’s stage 3B serous carcinoma. No lymph nodes were removed during the hysterectomy and the surgeon considered going back in but oncology said no.

i had a CT scan which showed some of my pelvic nodes were reactive but the medics weren’t sure if that was due to them having cancer or just because my body and my bladder, which had been nicked during the surgery, were healing.

On 9th January I had my oncology appointment and planning CT and then on 22nd January I had a PET scan so they could check the para-airtic nodes.

Currently the plan is radiotherapy 5 days a week for 5 weeks with Cisplatin chemotherapy on days 1 and 22 followed by brachytherapy and then 4 cycles of Carboplatin/Paclitaxel. The order of the treatment might be reversed if the PET scan indicates cancer in the nodes and the stage would change to 3C2.

I’m biting my nails anxiously waiting for the treatment to start as it seems so long ago that cancer was suggested as a possible reason for my symptoms.

I have to say that despite my obvious worries my oncologist has been very positive that this is purely preventative treatment rather than palliative. I asked her if it was worthwhile having treatment or was I just going to suffer for several months and then die at the end of if and she was emphatic that I should go ahead and this treatment was effective.

There are other contributors in this forum who have been through the same and are out the other side of their treatment. For the life of me I can’t remember their names but they have been super supportive to me and they will probably reply to you soon.

Pam xx

I have a similar story, but I did find out stage just pre op, biopsy showed precancerous cells in womb, lining 6.7 mm. Hysteroscopy told they couldn’t see anything. X-ray clear, MRI showed bits in my womb, but a prominent but not enlarged lymph node..no one could tell me what prominent lymph node meant. As result of this I had PET scan pre op, which didn’t show cancer in lymph nodes, but some small cancerous cells on a an ovary, as a result I was stage 3 pre op. The surgeon suspected there could be microscopic cells in lymph node that the scans can’t show up.

for me, as they knew this pre op, they decided not to touch any lymph node, and have abdominal hysterectomy, as he wanted to take everything out in one lump, and they could then nuke the lymph’s afterwards, in case there was anything there.

plaaned treatment for me, is 25 days radio, no brachytherapy as cervix not affected, with low dose Cisplatin on Day 1 and day 22 of radio. This to be followed with the 4 cycles of carboplatin/paclitaxel.

i started the chemo/radio treatment on Weds this week and doing OK so far, just some minor nausea usually starting when travelling in car to hospitals (I used to get car sick as a child) and tiredness following first night as given steroids, GP has given me sleeping tablets for the days I take steroids, so best nights sleep for ages the last two nights. had early appt for radio yesterday so was able to get out for a longish walk, caught up with some friends, and managed to get to M&S to treat myself to some nice goodies I could just pop in the oven. Saying that I realise it will get harder as the weeks continue. Having started the treatment, I have now started thinking of post treatment plans.its almost my head couldn’t think past the treatment until I started it.

Both my surgeon and oncologist definitely saying this is preventative treatment, will take a few months out of your life, and then get back on with it. And once I get past my “support” nurses everyone has been so supportive at every stage of my treatment

wishing you well

Hi Laurie

Welcome to the Womb group. I am sorry to hear that your post op histology did not come back as expected. 

For me also I had tiny cells that were seen during pathology that were too small to be seen on a scan. Sometimes things unfortunately do not always show on scans.

If you click on my name my profile will come up but I also had to have unexpected further treatment due to having an aggressive grade. It took a while to come to terms with. Once I had accepted it, I was keen to get started. 

I think the positive thing is that it is a grade 1 cancer. Although it has sneaked out into the lymph nodes - grade 1 tends to do so more slowly and less aggressively. At stage 3 it is still treatable and I have come across quite a few ladies on here who have had successful treatment. 

My follow up was 4 cycles of paclitaxel and carboplatin chemotherapy- 21 day cycle. Most ladies seem to have either 4 or 6 cycles depending on their post op results. Mine was followed up with external beam radiotherapy and I had 25 sessions of this. 

Before you have the treatment you will have a consents appointment with your oncologist who will explain the benefits and risks of the treatment. You will have an opportunity to ask questions. 

I did scalp cooling (paxman) and found it ok. I kept a lot of hair. I did have a wig on standby and plenty of scarves but didn't really use them.

I had p53 wild type and was told it was the better one to have. Its a tumour suppressor gene. There is also one called p53 abhorrent which has the genetic mutation in. My consultant however said that these were only part of the picture and things like hormone positive and mmr status were also important. Also certain genetic factors such as POLE or Lynch mean the cancer responds better to some treatment rather than others.  He also explained that they are used to tailor the treatment to the main thing- stage and grade. 

I hope this helps a bit. I am sorry that your results were not as expected. if there is anything you want to ask about the treatments please do so.

On my profile there is also a blog I put together about my scalp cooling experiences that some people have found helpful

Jane

Hi Pam,

 Sorry to hear of your diagnosis as well.  Cancer is relentless!  I wonder why they did not take any lymph nodes as well maybe it's a new thing now they feel that treatments can take care of any cancerous lymph nodes or something.  I mean lymph nodes are supposed to filter out of lot of things in your body and are an important part of your immune system.  

Your going to do just fine. - We will be going through treatment's at the same time.  Im concerned they will be brutally hard on me.. and I do live alone in the middle of the sticks... but I am going to suck it up and dredge on as I want to do anything and everything to get this monster from ever returning. 

As the saying goes.  "Slay the Dragon" and right now this cancer is the Dragon.

Thank you for responding and best wishes to you on this journey we never asked for.

Laurie  

Hi Jane,

Thank you for responding! Where do they test your cancer for genetics like for the POLE etc?  So far mine has not been tested pathology (on bipsy)  did mention no P53 and a few other things about MSHI, MSHI2 and MSH6 I believe.

Tuesday yes will be my consult with the oncologist for the first meeting.  I am 3 1/2 weeks post surgery so assume treatments will start here in Jan sometime.  Not looking forward to feeling horrible as I feel just fine now but... I guess the saying "No pain No gain" implies in this instance. 

I'm not concerned with loosing my hair (well some as thats my vanity talking)  my hair has always been so very fine and thin my whole life. I might even get used to wearing wigs.  If its a choice between hair or cancer.. well we all know the answer to that..   

Best wishes to you on your journey.

Laurie

Thank you for your letting me know your journey.   Seems more and more they are not removing lymph nodes anymore. I suspect its because chemo and or radiation if pretty effective at killing off anything in them.

My PRO surgery scan CT with contrast did not show any cancer at all anywhere I guess even though larger cancer cells found in my lymph nodes after surgery they were 5.8 mm still did not show up on the CT scan unless they were just missed.  

I am assuming i will have the same treatment as most 5-6 weeks of chemo and also radiation due to lymph node and some brachytherapy due to cervix involvement. 

I can't wait until the day I can make plans again in my life well to feel like I even have a future again.  Right now I feel like I am im limbo.

Wishing you well as "well"

Hi Laurie

When they did my biopsy they got various different markers- p53 wild type, no MMR, progesterone positive, oestrogen positive etc.

Certain markers that come up in some people would suggest the need for further testing- POLE, Lynch and I believe others.- But basically its from the biopsy pathology and then pathology is looked at again post op. The MSHI is something to do with the genetic coding but it is not something that I know much about. With all the pathology it is helpful because it helps the oncologist decide which treatment is potentially the most effective. So for some cancer this could be chemo. For others it could be immunotherapy. The grade, stage and all the factors are put together to come up with the best treatment plan. 

I hope Tuesday goes well and it will be an opportunity to discuss any post op pathology with the consultant. They will also go through the chemotherapy in detail.

At my consents appointment I was told that treatment needed to start 6 weeks post surgery to give time for everything inside to be healed. I would imagine yours would start mid to end February, depending on how busy the hospital is. 

Good Luck

Jane

Hi. Would you mind me asking what your symptoms were?

I do hope you're continuing to get the support you need x

Hi, IdahoGal, sorry I am late joining this discussion. I was diagnosed with Serous Endometrial Cancer in March 2022. In May 2022 I had a total hysterectomy and removal of many lymph glands. Four para-aortic lymph glands contained cancer cells, but the remainder were completely clear. I was Stage 3C2. My treatment was six sessions of chemo and four sessions of brachytherapy. I didn’t need any external radiotherapy. I finished treatment in December 2022. Since then I have had many follow up appointments and 3 CT scans, the last one being in January this year. All have been completely clear. I feel very well. I hope your treatment continues successfully. Best wishes 

Hi Laurie. His are you coping with your treatment so far?

Ive had my second and final brachytherapy treatment today and am 1/2 way through the external radiation.

My Cisplatin plan changed when the PET scan showed some pelvic nodes were affected along with the Iliac node. It hasn’t reached the para-aortic nodes. However they wanted to give me a bigger overall dose of Cisplatin so needed to spread it over the 5 weeks of radiotherapy to avoid me being too sick. So I have had 3 doses so far with 2 more to go then the 4 cycles of Carboplatin/ Paclitaxel.

I think I’m coping ok. I know now that I’ll be bloated and peeing a lot for a couple of days after the Cisplatin and the brachytherapy affects the bowel for a couple of days too.

My main problem is being unable to get a good sleep and my emotions are all over the place. I cried a little when another patient rang the bell in the radiotherapy suite the other day. How embarrassing  

Hope all is going ok for you

Pam