Hi all,
I arrived at hospital today for 3 sessions of brachytherapy only to be advised that 5 weeks of external beam radiotherapy should have first been discussed as an alternative (but hadn’t been).
I was unable to proceed with treatment as consent therefore not secure.
My results from hysterectomy on 9 January were stage 1a, grade 3 with substantial lymph vascular space invasion.
Has anyone been given the two radiotherapy options with similar pathology results please and what did you decide or were recommended?
Thanks much in advance
I was grade 1a stage 2, and had both 25 x radio and 2 x brachy. Obviously I’m not medical but if my understanding of my own treatment is correct, my brachy was to help prevent recurrence locally, and my radio was to help zap any stray cells that might have been in my lymph nodes, so for different things. Is having both an option at all?
Hi Beepeep
I am sorry to hear that today did not go to plan. It is important however that you are able to make an informed consent.
I had similar results to you and had chemotherapy and then external beam radiotherapy. I was told that brachytherapy was not needed as no cancer cells were found in my cervix.
The way it was explained to me that with a grade 3 cancer and especially where there is LVSI present the brachytherapy would aim to try to prevent recurrence at the top of the vaginal vault. The external radiotherapy would be to mop up any stray cells within the pelvis- this is important where there is already lymphatic/vascular invasion.
The chemo was to mop up any stray cells that are whole body wise. When there is evidence of lymphatic/vascular invasion there could be the chance that tiny cells could go around the body via the blood or lymphatic systems and in time set up elsewhere. So the treatments are to attempt to deal with any tiny cells that remain.
I did not have brachytherapy but most ladies who I have come across on here have found it ok. With the external radiotherapy- there can be side effects and for many people they can resolve shortly after treatment ends. For a few they can linger.
My feeling for a grade 3 cancer with LVSI- I would be asking for external radiotherapy alongside the brachytherapy.
With the LVSI I would also be querying why chemo was not being offered. It maybe due to other factors as it is not just stage and grade that are important.
If you need to talk this through, please do give the Support Line a call.
Jane
Thank you so much - really helpful. I think it should be external beam therapy too .
Many thanks Jane - I wonder if having stage 1a rather than 1b as you had impacts on the chemo option. I am sorry you have had so many long term side affects from the radiotherapy . I have another appointment with an oncologist on 29th so lots of questions and reassurance needed especially re no suggestion of chemotherapy.
Hi again Jane, I think when I joined the online forum, I came across some statistics on chemotherapy , percentages I recall on the impact of outcome's on having chemo? Do you know where I can find this info or shall I start with the helpline ? I wonder why chemo hasn’t even been raised for me ? This is concerning and I am losing confidence in my local nhs trust . I am already nearly 2.5 months on from my hysterectomy without adjuvant treatment having started .
There can be differences between hospitals and policies but it was the grade 3 that meant I needed chemo. But there are different types of grade 3 cancer- mine was carcinoma sarcoma and I had substantial LVSI- so it was this rather than the stage.
it's worth asking your consultant about why they have not suggested chemo. There may be a good reason. For example some ladies have POLE within their results and then chemo is not normally given. There are also 2 types of endometrial cancer- type 1 is the usual type and then there is the rarer type 2.
So mine was type 2, grade 3 with LVSI. No gene mutations. Oestrogen and progesterone positive.
Statistics can only be a general guideline as it does not have your specific results/medical history etc.
If you give the Support Line a call you can talk it through with one of the nurses.
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Jane
Hi Beepeep
My final staging after my hysterectomy was Stage 1b Grade 3 endometroid cancer MHS6 Deficient with no Lynch Node invasion. I have been told I will be having 3 x Brachytherapy to mop up any stray cells, I was expecting more with the Grade 3 genetic cancer so not sure why its only this, I have my call today with the Cancer Centre so I will see if that remains the same as I would then be like you and not have a clue what to do.
Linda
Thank you so much Jane. Received a call this morning saying 3 sessions of brachytherapy but wants to discuss chemo now! All rather here, there and everywhere and annoying as I have booked a holiday in August too as was not mentioned in my first post op oncology appointment five weeks ago .
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