My mum was diagnosed with stage 4B serous endometrial cancer a couple of months ago. She had a successful hysterectomy + cytoreductive surgery a couple of weeks ago and is recovering really well.
We had a follow up appointment with her surgeon and then the medical oncologist to focus on the next stage chemotherapy. The plan is for 6 cycles of carbotaxol as we’d expected from what I’ve read on here. We already know her tumour is MMRp so it won’t be responsive to immunotherapy. I asked about her HER2 status and the medical oncologist brushed the question aside and said they don’t test for it at this stage. I’ve heard of a few people with endometrial cancer getting chemotherapy + herceptin as first line of treatment if they are HER2 positive, I’m now realising a lot of those may be in the US.
i don’t quite understand why they wouldn’t look at my mum’s molecular profile upfront. I know it’s something I shouldn’t bog myself down with too much but I want to know that my mum is getting the best possible treatment and that the doctors know as much info about her specific tumour and can treat it accordingly. It helps to know there are constant innovations happening for endometrial cancer but frustrating when you realise some of the innovations aren’t being utilised in the UK as they may be in other countries. I don’t want to wait for the cancer to come back to start finding out this information but it doesn’t seem like this is something that’s really done in the NHS.
Has anyone ever done testing on the molecular profile of their tumour in the UK? Was it done via NHS or privately? My mum is being treated at Guys St Thomas which I know is a good hospital (and they did a really great job with her surgery & care following it) but I was also wondering if it’s worth getting a second opinion. I’m looking at Royal Marsden that seems to be more innovative. I don’t want to delay her treatment and wouldn’t want to wait for the second opinion before starting treatment as I assume they’d likely say the same treatment but I also want to make sure we’ve covered all bases, and are confident this is the best treatment for my mum and they aren’t missing anything out that could be useful for her. I’ve heard people say you should look into clinical trials early since once you’ve had multiple lines of treatment you tend not to be eligible.
I know that the doctors know their best, and I’m not questioning them. I’m just a little disappointed that the testing isn’t being done at all esp. when you hear of advancements in precision oncology.
Hi
Am so pleased that Mum is doing well after surgery.
It must feel frustrating at this stage that they are not looking in further detail at her genetic profile in more detail.
I know from my own post op pathology there is a lot of information that they will probably already had which can be used to work out the best treatment.
I am not sure whether having a more in depth genetic profile would change the initial treatment.
What I do know is that carboplatin and paclitaxel chemotherapy- over either 4 or 6 cycles is the normal follow up treatment for ladies with either an aggressive type of endometrial cancer (like mine was) or for a more advanced cancer (like Mum's is) It is a standard follow up treatment after surgery and from my own understanding this has been the case for many years and it is an effective and well tried treatment. From my understanding the standard treatments are done first and then where there is a need for more treatment then some types of genetic markers would help decide on the most effective follow up.
I have not heard of herceptin being used for endometrial cancer in the UK. I have heard of ladies with more advanced cancer being offered the same chemo as mum and the cancer has gone into remission and a hormonal treatment (Megace/Provera) is used to keep the cancer at bay. During this time regular scans are done.
I think not delaying Mum's treatment, whilst looking into getting a second opinion is a good plan. Getting a second opinion may help reassure you about Mum's treatment plan but may offer some extra ideas that may be worth looking into. It may also give the opportunity to ask about clinical trials.
Getting a second opinion | Macmillan Cancer Support
I had a look on Cancer Research and found this.
Find a clinical trial | Cancer Research UK
I hope this helps a bit, do give the Support Line a call if you need to talk it through.
Jane
