Hi there,
I'm completely new to this forum. I'm really struggling right now with the uncertainty of my mums treatment and what her options are so I suppose I've reached out on here to see if anyone knows of any other options/trials that are taking place that she can be considered for.
Background
My mum was diagnosed with endometrial cancer in Nov 2021, she had a full hysterectomy in December 2021. They removed the first sentinel node during the procedure. It showed signs the cancer had spread there but no further spread. She had 6 rounds fo chemo following the op and this was successful. For a year her scans were clear. Then in May 2023 the cancer had returned, all still very localised and they'd caught the changes early again. She had a further 6 rounds of chemo. The scan at the end showed her cancer was 'stable'. Then in December 2023 the routine scan showed some growth so she was offered immunotherapy. She started this in January but has had a very rare reaction to this resulting in being admitted to hopsital in a critical state. She is recovering from this however she can no longer continue on the immunotherapy. Her consultant is due to meet with her in a couple of weeks and have discussed more chemo and potentially radiotherapy but this is all tbd at the MDT meeting.
Naturally I'm so frightened. I'm so close with my mum and cannot bear the thought of life without her, I really wouldn't cope. I've emailed a couple of other trusts for advice/second opinions, I have faith in her consultant but also worry that they're not doing enough for her (but I am an extremely anxious person that worries over everything and I suffer really bad health anxiety myself). You probably can't answer my concerns which I understand but if anyone has heard of anything outside of the above or any trials please let me know.
Thank you
Xx
Hi CiCi
I am sorry to hear that your Mum has had a reaction to the immunotherapy and that she now needs to stop it. I can understand your worries. It is good that there is an MDT happening and that this will be followed by an appointment with Mum.
I hope Mum is starting to recover from the reaction and it must have been scary for you both.
Getting second opinions can be worthwhile and also the upcoming appointment should give you a chance to ask plenty of questions. Why not think it all through with Mum before hand and try to come up with a list of questions before hand and then take them with you. I have done this many a time. It can help because it gives you time to come up with questions about what in particular you both want to know and it can give you a very good starting point. During the appointment as well, you can always make a few notes and if you then think of something you want to ask after you have left then a call to Mum's CNS would be a starting point.
You don't mention which chemo Mum had previously. I wonder if it was carboplatin and paclitaxel as these seem to be the first ones that are offered. It seems that these did indeed work the first time and managed at keeping things at bay for a while. When the cancer came back if it was the same chemo then it seems to have not worked so well as it didn't keep it at bay for so long. Immunotherapy can be worth a try but like Mum found out - and the same with most cancer treatment- there can be bad reactions at times.
The next step could be to look at chemo again- it has worked previously so may work again. It may well involve trying a new type of chemo and then to see how it can help. There are many different types of chemo and chemo regimes so it may be the first line they go down.
You haven't said that Mum has had radiotherapy before (it is not normally given to the same area twice) but radiotherapy can be an effective treatment. I had 25 sessions of external beam radiotherapy. Again with radiotherapy there can be different doses and different regimes according to what they want the aim to be. Some people can have radiotherapy with the intention of mopping up stray cells, some have it to try to kills any cancer and for some it is to try to reduce unpleasant symptoms and to keep things at bay as long as possible.
Sometimes radiotherapy can be used together with chemotherapy.
Depending where Mum's cancer is sometimes further surgery can be an option. There are also things like targeted therapies or monoclonal antibodies that may be worth asking about. Sometimes some treatments may not be appropriate but there is no harm in asking. It might also be asking for some clarification about the immunotherapy mum was on- it may be that there could be a different type that could be trialled. From what I understand there are different types of immunotherapy.
Do you know what stage and grade Mum's cancer was? as this can influence treatment decisions. It is something to ask about at the appointment. Further treatment could depend on exactly where the cancer is. For example if it is localized to the pelvis then external beam radiotherapy may help but if it has spread out of the pelvis then a systemic treatment such a chemo may work better.
You have asked about trials. Cancer Research has a search function and I will pop a link here
. Our research by cancer type (cancerresearchuk.org)
You can also ask Mum's consultant if they are aware of any current trials that might be suitable for Mum. Going on a trial will depend on lots of different factors and your Mum's consultant would know Mum's full details, pathology etc so may have suggestions.
I hope this helps a bit. If you need to chat things through then please do give the Support Line a call.
I hope that Mum is recovering from the reaction to the immunotherapy and I hope that her appointment goes well and brings you both some clarity about what the next step is. If there is anything else you need, please do ask.
Jane
