Hello All,
I am in a bit of a state right now. I thought I'd managed to settle myself down, but I'm back up in high dough. I was referred for abnormal bleeding, and was expecting something like endometriosis.
The biopsy results (hysterscopy plus biopsy and mirena coil fitting was the procedure) have come back with a grade 1 endometrioid cancer. I am 33, and there is no history of this type of cancer in my family (that we know of). It was found "rising from an area of atypical hyperplasia".
I have always had heavy and prolonged periods with lots of clots, and started my periods at age 9. I had started having what I thought was ovulation spotting, and I just had a general feeling something was wrong. I have had a lot of fatigue, and was being investigated by neurology for that. Anemia came back, and when they looked at that we then looked at my bleeding, and now I have womb cancer.
I am finding it all so hard. This was all this afternoon. I moved away from my wider family who are all 3-4 hours away. I have very few friends local to me (lost a lot through my fatigue and them moving away). I do not have a partner. Last summer, prior to becoming unwell with fatigue in September, I had undergone fertility testing as in the next two to three years I wanted to start a family even if I did not have a partner. I am now trying to resign myself to not having children.
I am starting a new course in August that I am very excited for, and I just started a new job working for myself as a freelance consultant. I was feeling excited for the first time in a long time about my future and my plans.
I dont know how to support myself through this. My Mum and younger brother are coming down to be with me tonight, but I am worried that I will need to do a lot of emotional labour for them both, just now and also all the way through this. I am worried I wont have the patience or mindset to do so. I dont want to be cruel, and I know it must be terrible for them, but I havent fully processed it myself yet. I just need to vent I guess.
Im so sorry. I hope that tomorrow and from then I will have more of a plan - I know an urgent referral has gone in tonight to my GP, and the cancer service where I am, and I've been referred for an MRI etc.
To top it all off, my pelvic area has been hurting since Monday. Mild period like cramps. It wasn't hurting at all in the run up to this, and ironically, the period pain I was getting was less than usual, and the heavy periods/large clots were lessening, with my cycles lengthening from 28 days to 35 some months.
I thought I was going through an early perimenopause/menopause. Now I'm very worried I left it too late to get checked (if these were all symptoms, Ive been suffering since around September last year, and honestly probably longer than that). Equally, I know that the biopsy so far has shown Grade 1, so it will hopefully be treated in time. It is p53 wild type, and hormone receptive, but POLE testing is pending.
I am very scared. Trying to stay hopeful and positive
Hi Physalis
Welcome to the Womb group.
I am sorry to hear of your diagnosis of endometrial cancer. I know that it is a worrying and stressful time.
The good news is that it is a grade 1 cancer. This means it tends to be a slow growing and less aggressively behaving cancer. Hyperplasia put simply means that your womb lining was thicker than they would expect it to be and atypical means that cancerous changes were more likely. The abnormal bleeding was the symptom of this so you did the sensible thing in getting it checked.
The normal next step after a diagnosis is the MRI and/or CT scan and they would be looking to stage the cancer. (see where it is exactly in the body) From this they will have a provisional stage and grade of cancer and then I would expect them to get you in to discuss a treatment plan. For most ladies, where it is medically possible a hysterectomy is the first line treatment. Where fertility is an issue- and if the cancer is at the earliest stage and grade- the mirena can sometimes be used.
For some ladies the surgery is enough to remove the cancer, for others some follow up treatment may be needed. This would depend on post op results.
The fatigue that you have been feeling may well be down to the anaemia that you have been experiencing from the heavy blood loss.
I am sorry to hear that you are having some cramping pains and it is worth contacting your GP if they become worse or you are concerned. They may be due to the mirena coil that has been put in and your body getting used to it.
It is normal to feel scared and unsure and it can be a shock to get a diagnosis. We do have the Support Line available if you would like to talk things through with someone.
It is good that you have family who want to support you but I do understand that you have not had time to process it all yourself yet. I felt for me I needed to come to terms with it myself first.
If you click on my name, my profile will come up- but I would expect that your MRI will be done fairly quickly and for me the CT/ biopsy results came at around a week later. I was then called in to see a consultant and things moved quickly.
There are many lovely ladies on here who will want to offer you support so if there is anything you need or want to ask about, please do so. Although it is a shock to have a diagnosis, endometrial cancer when caught at an early stage is normally a very treatable cancer.
Jane
