hello I finally got my results yesterday off registrar from op on 29/2/24 it’s going to MDT on Friday
Stage 1a endometriod adencarcinoma mixed with clear cell and P53 mutation nothing found in sentinel nodes
they going to recommend 6 cycles of chemo and also radiotherapy this is as adjuvant therapy due to risk
I am not nit sure what to feel or think or ask and basically numb
Normally they call you in on the Tuesday after at Christie’s but as giving knee phone will be referred to next stage and a call on Friday to say final MDT decision
sue said last three years found adjuvant therapy works well
the gyny nurse at my local hospital said it’s good news it’s stage 1a and the registrar said it’s not left the womb lining so not gone into the muscle but a ensure a stray cell is blocked the chemo will sort out
sounds daft I am due to sing at a theatre on 26/4/24 she said I will be going for app two weeks and then starting chemo after so the week I should sing
I’m too overwhelmed to think straight
should I be very scared and worried with these results xxx thank you
update on the Friday April from mdt don’t need chemo just bracytherapy as p53 wild type more than 95%
Hi Shirleydana
Although it is hard to wait for results, it can still feel a bit of a shock when they come through and are there in front of you in black and white so to speak. It is good that you do not have to wait too long for the MDT to meet and confirm what they feel is the best next step.
It is understandable that you feel overwhelmed and feel like you can't think straight. Do consider giving the Support Line a call if you feel chatting things through would help.
Your results show that at stage 1A your cancer was at the very first stage and this is good. It also sounds positive that the consultant feels it is contained within the womb lining. It sounds as if yours is a bit of a similar situation to mine in that you have some mixed type cancer cells.
So your cancer is the more usual adenocarcinoma in the endometrium but because they have found some clear cell elements then that makes it tend to be more aggressive. All that means is that the cancer cells look a lot less like normal cells and have more potential to spread- IF no follow up treatment was done. The p53 mutation is a genetic factor and to be honest it is more for them to work out which treatment is most suitable.
So they have appeared to have got it at a very early stage but if they didn't offer further treatment now (it's a sort of mop up any stray cells situation) then in time, there could be a possibility in some ladies that a stray cell could set up somewhere again.
Adjuvant therapy basically means they want to do it as a sort of belt and braces thing.
My cancer was also early and mixed type and I had chemotherapy and then external radiotherapy.
Chemotherapy can be tough at times but I did find it was doable. There can be side effects but not everyone will get them and if you do it is unlikely you will get them all. When I did have side effects they were on the whole managed with dose adjustments and medication.
I had carboplatin and paclitaxel chemotherapy- and this seems to be the most common first line ones that are offered. At your MDT they will look at your individual results and medical history and then will suggest the best regime. For me I was on a 21 day cycle so one day at the hospital in the day unit and then 20 days at home. For radiotherapy I was given 25 sessions of external radiotherapy. I didn't have internal radiotherapy. So normally the chemo is to mop up any stray cells whole body wise to prevent recurrence and the radiotherapy is directed on the pelvis to try to prevent local recurrence.
My appointment to discuss chemo happened fairly quickly after getting my results but the chemo didn't start until I was 6 weeks post op as they like to ensure that you are healed from the op.
I hope this helps a bit, if there is anything you want to ask, then please do so but once the MDT has met and you know for sure what is being recommended things should start feeling a bit more in control. I found once I had a plan and dates and times I was able more to focus on just getting on with the next stage of treatment.
Jane
Hi Shirleydana
Clear cell is a rarer type of womb cancer (similar to, but different to what I had) There are many different types and I suppose rather than think of percentages, it is perhaps more helpful to think of it in terms of the individual pathology combined with your own health etc is what helps the doctors suggest the best treatment plan. Different pathologies may respond better to different types of treatment. It is called clear cell because of how the cells look under the microscope.
Side effects will depend on the specific chemo regime that you are on. Most ladies do seem to start with carboplatin/paclitaxel. But there are exceptions.
Side effects can vary between the different chemotherapy combinations and also between people. When I heard I was going to have chemo I had all these ideas about what it would be like and in fact most of my fears were not realised.
It was nothing as I expected and the chemo ward was bright and airy, no beds, just reclining chairs and it was really calm. I was well cared for as I am sure you will be. For me it was blood tests a few days before and then on the day my chemo was given by a drip into the back of my hand.
Hair loss does depend on the chemo drugs but even if you do have one that does cause hair loss there are things that you can do. For some people cutting their hair is how they deal with it, some people prefer scarves, wigs etc. For others scalp cooling is an option.
I did scalp cooling. I will pop a link below with a piece that I have just written about my experience. It is not for everyone but it helps to have the info to make the choices.
Re the caravan. I would have felt well enough to do something like that for some of the time. I would find the first few days of each cycle, I did feel rough but then would start to recover. I found side effects did follow a pattern with each cycle so once you have had the first one you will have a better idea. But do speak to your consultant nearer the time.
Most of my side effects from chemo were managed with medication and taking time to rest when needed. You will also be given a 24 hour phone number to call so if you do feel unwell they can prescribe something, give advice and if necessary, call you in.
Hope this helps
Jane
Hi Jane
I also had a shock when they said I needed chemo and radiotherapy as had not been expecting it. It felt like the goal posts had been moved in a way. It is scary when it is all stretched out in front of you but once you get your head around it and it starts, it does go quicker than you think. My advice is to focus on one thing at a time- otherwise it can feel overwhelming.
For me, having chemo was a big thing and I was really scared when they told me about all the side effects. In reality- although I did have some, I didn't have most of them and the ones that I did, were manageable with medication.
Try to go with the flow and see how it does affect you. Everyone is different. If you do get any effects then do not be afraid to call your hospital 24 hour cancer line. You will get through to a nurse who will be able to access your records and give you support, reassurance and if necessary arrange for medication. They never mind and it is better than sitting and worrying. You will also be given a book/diary and I suggest you fill it in each day. I found that the side effects followed a pattern and it really helped with the following cycles to know what was coming up. For instance if I felt sick on day 4 in one cycle I could take anti nausea to prevent it on the next cycle.
Chemo was nothing like I had imagine or seen in the media. It was a calm ward, quiet and efficient. Arranged into bays with reclining chairs. You will get there a bit early so they can put the cooling cap on. I was recommended to take some paracetamol before hand and found it helped. While they are doing that they talk to you and start setting everything up.
You will go home with medication and although you don't normally like to take it, this is important as it is to help your body cope with the chemo. To take home I would have steroids, anti nausea tablets and a few other bits. Take the nausea ones before the sickness sets in and they seem to work better.
My side effects were thinning hair (you will still shed hair with scalp cooling but it is still working and protecting your follicles.) Nausea, some sickness, some upset tummy, fatigue, generally feeling rough, crampy tummy, pains in back and legs. I also had a sore mouth and sore eyes. All of this had medication that helped. My dose was adjusted slightly on the next cycle and that helped. On main change was to put my steroids on a tapering dose and this made a big difference. I learnt to rest and listen to what my body was telling me.
I found the first week I did tend to feel rough, the second week a bit brighter and the third week, more like my self.
It is doable, there are some times that I did feel really unwell but I was well looked after, One thing I would advise is to get an accurate thermometer and to take your temperature regularly. During chemo you will be at risk of infections and the first sign can be a change in temperature and if this does happen or even if you don't feel quite right, then do give your hospital an urgent call.
Hope this helps, if there is anything else you want to ask, please do so.
Jane
