Newly diagnosed and feeling out of my depth

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Hi everyone

I was recently diagnosed with endometrial cancer (around 3 weeks   I'm still coming to terms with it all and it's implications.

My journey to the diagnosis has been a bit crazy imo.

I was referred for an urgent TVS after an MRI for another investigation showed an adnexal cyst and the findings of the scan resulted in a gynae referral.

I already have endometriosis, so assumed it was related and hoped that they would deal with that  but I was fobbed off and I had my first hysteroscopy and possible polypectomy last year.

The results of the biopsy showed endometrial hyperplasia without atypia and I begun a course of provera as I declined the mirena coil due to painful previous experience of it with no relief of symptoms. 

I was told that due to my age and type of hyperplasia, the chances of it becoming cancerous is less than 5% in 20 years, so I never thought of getting cancer and tbh my main worry was being made to have the mirena coil and having my endometriosis dealt with. Subsequent hysteroscopies showed no improvement and I had an increase in hormones but unfortunately the recent biopsy showed cancer.

I was alone at the time and it really threw me. It was like a triple whammy to the head, the cancer diagnosis,  advising a hysterectomy and having to go through menopause. 

Due to my age and not having kids i am not keen on having a hysterectomy and all this has really impacted my MH.

They aren't keen to do further hormonal treatment or leave ovaries in to avoid menopausal and my referral for Fertility wasn't very helpful.

I felt fobbed off during the appointment, stating that which I am already aware of that I can have a family via adoption etc but no egg preservation was offered. I am single but still feel that there could have been more consideration. 

I don't have a particular consultant (I've seen two since diagnosis) and they have have said I could try mirena and a strong dose of hormones with the hope it improves but due to progression into cancer they aren't recommending it tbh or get a hysterectomy and I just feel so overwhelmed and loss of control of the body which is really impacting my MH. 

I have a lot of trauma of SA and DV where I felt loss of control and this is reinforcing it all again.

I feel a lot of pressure to agree to the hysterectomy which has been provisionally booked for 3 September and I'm very concerned about my MH after especially going through the menopause and uncertainty whilst trying to recover and waiting for results and I've relayed this to the consultant, my nurse and GP the latter who isn't giving me anything for my stress and anxiety. I'm also concerned about caring for my elderly parents too after

I'm also concerned about my endometriosis as I know even a hysterectomy won't help it and I'm being gaslit again about it by the nurse who is like I'll be better from it having the hysterectomy.

I have arranged therapy but it's not until end of the month and don't think 1 session will help prepare me.

I don't have a lot of good support either at home. My sister rang me once and although I've seen her since many times she never asks me about it or how I am etc. My mother who I'm a carer for is like her treatment and get better ASAP and my brother is the same too. 

I feel soooooooooooo guilty and hate myself for feeling so selfish when I'm quite lucky and I know it's selfish but I can't help feeling this way and I don't know what to do

  • It's been a year that i was being treated for endometrial hyperplasia with the hormonal treatment and I'd had a few hysteroscopies in this time and the most recent showing that it had become cancerous. Thanks for the wishes but my only solutions appear to be the hysterectomy or doing nothing which isn't felt feasible 

  • If your cancer is early stage 1 there is also the option of having internal radiotherapy (brachytherapy) as a primary treatment. I was offered that at one point and may yet have that. It carries fewer side effects than external beam therapy and if you have higher dose, it reduces the risk of blood clots which can be an issue with the lower dose type as that requires the patient to lie still for much longer periods of time.

    Even though your cancer progressed from hyperplasia to cancer, that doesn't mean that the hormone treatment won't work ongoing. Mine didn't work to start with at all but after 10 months has started to regress. It's not an easy decision but I would explore everything before making a final decision. Most women have the brachytherapy after a hysterectomy but if you only have early stage EC, it can be used for those who don't want a hysterectomy.

  • Hi, I have just read that some women wanting to preserve fertility can have something called 'hysteroscopic resection' for early endomtrial cancer and can go on to have a baby afterwards. What it would appear to involve is a kind of minor procedure using the hysteroscopic approach (under local anaesthetic sometimes), which removes the diseased area.

    A  mirena coil is fitted afterwards - but the good thing is that the cancer is removed by hysteroscopy first, which means the following hormone treatment might well be more effective. I think that it might at least be explored with your GP or CNS team?

    What have you got to lose by asking about this procedure? Kind regards.

  • Thank you very much for the different treatment options, I have contacted my cns to see if they are a possibility 

  • Well worth asking about alternative treatment options.

    The brachytherapy that is done where a lady has not had a hysterectomy is different to the brachytherapy that is done as the follow up treatment after surgery. It would be worth asking whether it would need to be done as an inpatient.

           

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