Mum diagnosed Uterine Serous Carcinoma - spread to lungs & mediastinum. I'm terrified

Hello Blueeyes

Welcome to the Online Community.

I am really sorry to hear that your Mum has had a diagnosis of cancer and I understand that this is a really worrying time for you both. 

Serous uterine cancer describes the type of cancer she has. It is a type 2, grade 3 endometrial cancer. I had a similar type 2, grade 3 cancer. 

The stage of the cancer put simply means where the cancer is in the body. So for Mum you know that it started in her womb and then some managed to set up in her lungs.

The stage and grade are important when they decide the best possible and most effective treatment. 

So it sounds like for Mum they are thinking the best treatment is to offer her some chemotherapy. I had chemo myself in 2022. The thing with chemo is that it is a whole body treatment and hopefully the treatment will work in the areas needed. With surgery it would only deal with the one area. My chemo took place after surgery but sometimes it can be used before surgery or instead of surgery. 

What happened with me and most likely will happen with Mum is that she will be given an appointment with a chemotherapy consultant who will go through the treatment with her. Mum will be able to have you with her if you both want it. It may be an idea to write a list of any questions you want to ask about and take it with you- sometimes they can give you a lot of information all at once. 

Although it is scary to be told that chemo is needed- I know I was- it was manageable. Where there were side effects these were on the whole managed with medication. 

My own treatment was surgery, chemo and then radiotherapy and I am doing ok. 

We do have the Support Line available everyday from 8am-8pm daily if you feel like it would help to talk things through a bit. 

I hope this helps a bit. I know it is a worrying time but we are here to support you. If there is anything you want to ask about, please do so. 

Jane

Thank you for your reply. I really appreciate it. The doctor today said it was stage 4 due to the fact it has spread into her lungs. I'm not sure on the staging and grading to be honest. From looking online I thought it was stage 4 grade 4B but as I say, I'm unclear. 

Thank you for explaining the treatment and indeed how you went through it too. 

I'm hopeful mum will have the sane outcome as you. Waiting until Thursday next feels like an age away but I am trying to keep calm and find reassuring information online where possible. 

Stage 4a is where there is some spread into adjacent places eg; bladder/bowel

Stage 4b is where there is more distant spread eg; lungs

I think the thing to remember is that although it has been caught at a more advanced stage, there are still treatments available. Hopefully Mum will respond well to the chemotherapy but if needed there are other possibilities such as radiotherapy. immunotherapy, hormone treatment and targeted treatments. 

The thing with a grade 3 cancer (serous etc) is that they do tend to be diagnosed at a more later stage as they have the potential to spread more quickly. The chemotherapy often used seems to be carboplatin and paclitaxel and often on a 21 day cycle. This would be one day spent at the hospital and then 20 days at home. Some ladies are offered a scan half way through the treatment, some ladies have a scan after the treatment. If there is not the hoped response from the chemo, then there are other types and regimes. 

When looking at information online it is best to stick to reputable sites like Macmillan, Cancer Research or NHS. There is a lot of outdated and incorrect information online and some can be quite scary. Anything online also does not know Mum, her general health and the exact circumstances of her cancer- so mostly online information is a guideline only. 

There are also the nurses on the Macmillan Support Line that you can talk to and ask medical advice from. 

I hope Thursday goes ok.

Jane

Hi there, 

I’m so sorry to hear about your mum’s diagnosis, and I’m sending all my love to you and your family. 

My mum is 64 and was diagnosed with uterine serous earlier this year so I know how painful & devastating the diagnosis can feel especially when it is diagnosed at a later stage.

My mum only had light bleeding as a symptom too but after the CT and MRI scans it showed it had spread to her abdomen (omentum, peritoneum, parts of her bowels etc) so was diagnosed as stage 4B. This was a shock as I remember while she was going through tests praying, hoping and pleading we had caught it an earlier stage but it is very common for serous to be diagnosed at a later stage, and I know there are a few other women here who’ve also been diagnosed at stage 4. 

My mum was able to have surgery which took around 12 hours and the recovery was tough. I think that has probably been the hardest part of her treatment so far. She’s now approaching her last cycle of chemotherapy, and we’re not entirely sure what will happen after that. 

The chemotherapy has been manageable for her. Everyone reacts differently but her side effects haven’t been too awful and the last few months have felt manageable. Her doctors have been amazing in monitoring her side effects and giving her medications / advice to help her manage them. She can be quite tired (especially as the meds she was given for her joint pain that she often gets have tiredness as a side effect) and at the start of the cycle she has an odd taste in her mouth that lasts for a few days along with the joint pain that comes and goes but with regular rest and the meds, she’s able to live her life relatively normally. I remember being so terrified of how chemotherapy was going to be like for her, esp with preconceived notions of what a chemotherapy patient “looks” like , and I’ve now realised there are likely so many other people around me going through such treatment at advanced stages that I might have no clue about. You’ll likely hear this elsewhere as I also did but the diagnosis is often one of the hardest parts especially when it’s paired with news of a more advantaged stage and everything you search / google feels incredibly bleak. You’re filled with grief, anxiety and uncertainty all while processing shattering news.

The only advice I can give (aside from staying away from Google cause it only adds absolutely nothing) is giving yourself the space to feel all the feelings and feel all the fear. The first month or two I would scream from anguish, I wasn’t eating or sleeping well, I didn’t want to interact with anyone who wasn’t my immediate family or boyfriend, I’d stay in bed all day and everything felt like a trigger. A simple trip to Tesco felt too painful as seeing elderly ladies made me feel angry. The only time I was functional was when I was supporting my mum cause I knew how much she needed me to be strong. I was in a deep state of grief. Not everyone experiences it that intensely but I learnt I was going through anticipatory grief and made space for myself to feel those feelings cause they are natural. Everything you’re feeling is completely natural and is how so many other people in your position feel.

I’m still grieving and I still feel sad, especially thinking about what the road ahead may look like for my mum but I’ve had time to process more and I’m much more functional, and more importantly my mum is doing better than I expected, and chemotherapy hasn’t been as awful as I expected. As horrible as serous endometrial cancer is, it is very responsive to chemotherapy and its helped knowing that my mum is receiving treatment that is fighting all the cancer cells. I feel like once treatment started, it felt better that something was being done vs all the endless tests / waiting for the diagnosis.

I’m wishing you and your mum all the best. It’s a tough journey but know you are not alone in this experience xxxx

I hope that Mum's last cycle of chemo goes ok for her. I had been wondering how she was doing. Thank you for sharing your experiences as well. Do let us know if there is anything you or Mum need. 

Thank you, yes she’s been doing really well with the chemotherapy.  

I’m quite nervous about what happens next and the monitoring stage where we’re just waiting to see when the cancer might come back but I’m grateful that treatment has gone well for her and has been manageable. 

Thank you for thinking of us xx 

I had mixed feelings when treatment ended- I was relieved in some ways but in others I was nervous that the treatment may not have worked fully. About a month after my final treatment I had an oncology appointment- including examination. I was then passed back to the oncology nurse team and I had a face to face appointment every 12 weeks for the next 2 years. I was also able to contact them between appointments. I wasn't given any scans but told if there were any concerning symptoms then I would have one. 

My nurse said that it is hard to predict recurrence and the best thing is for me to have had the regular examinations and to be told about symptoms that I needed to look out for. She said recurrences, if they happen tend to happen within 1-2 years treatment and with time the chances become less and less. 

I asked what would happen if it did come back- mine was lower stage but a high grade and she said that it would depend on where it came back- surgery may be an option, further chemo would be an option. 

This can be different for different people and there are other possible treatments that may be used- hormone therapy- depending on post op results may help some. For others immunotherapy can be an option. 

Thank you, I’m hoping that they might be able to offer her hormonal therapy for maintenance but will see once she has her post treatment CT scan. 

It’s hard not knowing what the road ahead will look like post treatment but all w can do is take one day at a time. I’m going to try not to get too caught up in trying to predict when a recurrence might happen (as your nurse advised). You want hard answers but learn that isn’t something anyone can ever really provide & everyone’s situation is so different. 

Thanks very much for your response. I’ve read the comments further down and I’m pleased to hear your mum is doing really well with her treatment.

we had our initial consultation on Thursday and they are offering mum chemo and immunotherapy. She also qualifies for a trial of a drug called Sacituzumab tirumotecan (sac-TMT). I initially thought this would be a great thing and was really excited about it as I was sad surgery wasn’t an option but mums quite concerned the induction phase is 1 month approx and she’s worried about possibly waiting another month to then potentially get the standard treatment anyway. She’s worried about having let things get worse for one month. I honestly don’t know what the right answer is and the hopeless feeling is stomach churning. 

thanks again for your message and I hope your mum continues to do well xx 

I’m really glad to hear that they are offering your mum different treatment options. There have been great advancements with immunotherapy over the last few years so glad that this is being offered to her, and that she qualifies for a clinical trial.

Yes it’s very frustrating when you’re waiting for treatment to start and worried the cancer may progress while waiting. When I expressed similar concerns to my mum’s oncologist nurse, they reassured us that it was unlikely for my mum’s cancer to progress in as short of a timeframe as a month. It’s worth discussing it with your mum’s oncologist, and whether a month delay will increase the chance of progression. Has she been assigned a CNS? I found them very helpful when we had questions or were feeling worried.

Is the choice between chemotherapy or the clinical trial? If so, I imagine it feels overwhelming having to make a choice while still processing everything but I hope the oncologists are able to give you as much information / advice to help your mum decide what treatment she’d prefer.

Wishing your mum all the best in her treatment xxxx